tag:blogger.com,1999:blog-23184661641461064702024-02-02T06:34:27.780+00:00My Pituitary TumourI've put this blog together to document my journey having been diagnosed with a Pituitary Tumour.....and to get down in words my experience and ups and downs of how my recovery goes. Hope it all makes sense.Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.comBlogger97125tag:blogger.com,1999:blog-2318466164146106470.post-70687636654791075382023-05-27T17:23:00.003+01:002023-05-27T17:23:42.420+01:00What does being a Patient Expert entail?<p><span style="font-family: arial;">Good question!</span></p><p><span style="font-family: arial;">My previous blog dealt with whether I identified with being an "expert patient" and I think the answer was yes in principle, although there was more to it than that.</span></p><p><span style="font-family: arial;">Over the years I have had my condition, which is now 10 years since diagnosis, I have learned many things. But the thing is, even after all this time, I'm still learning more new things about my condition. Even things I have already learned may have changed over time, so whilst they may have been true, they may not be any more. Which is why being an "expert" is tricky.</span></p><p><span style="font-family: arial;">If I have (say) brain fog today, or extreme fatigue, then this absolutely could be a lack of Cortisol (as I talked about in my previous blog). My body also fails to make any Testosterone, a symptom of very low testo is, guess what, fatigue. I'm being deliberately contentious using fatigue as the example, because there are SO MANY causes of fatigue. How am I to know?</span></p><p><span style="font-family: arial;">So being an expert patient is trying to understand the situation you find yourself in and comparing it to your previous experience - is it the same, is it different, think to yourself - are there any possible other causes. Speaking to someone else can help, my wife always knows when something is up with me, often before I do. Are you a member of a peer support group, can you ask their opinion, what is their experience. An expert patient isn't just an expert themselves, they know when and where to reach out to others who can help, both peers and professionals and give them support.</span></p><p><span style="font-family: arial;">What is going on with your condition? If you are trying to track a cause to an issue, make notes, make a diary of what is going on. When are you taking your medication, how much medication, what are you eating/drinking, what have you been doing during the day, are you sleeping normally, are you under any extra stresses.....the list of questions goes on. But make a note of them because despite you being absolutely convinced you know what you did and when, in 24/48 hours it all becomes a bit blurred if you haven't written it down, well it does for me anyways!</span></p><p><span style="font-family: arial;">So being an "expert" is about knowing you, and also about knowing when your expertise in you has run out and you need help. It isn't an easy balancing act, because sometimes we don't want to ask for help, or we fear what the answer might be if we do ask for help. But asking for help is sometimes the only way and it is nothing to be ashamed of.</span></p>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-85779116942796881552023-05-27T17:21:00.000+01:002023-05-27T17:21:00.943+01:00Am I an expert patient?<p><span style="font-family: arial;">I became more aware of the phrase "expert patient" recently. I have heard it before but it had kind of washed over me without really sinking in, what does it mean, do I identify with the phrase? It turns out, it created quite a debate in my head......</span></p><p><span style="font-family: arial;">I think the short summary of the answer to that question is "sometimes", but I do feel that a person who proclaims to be the "expert patient" needs to temper that feeling with views from others, particularly medical professionals. The language used is complex and I think that is why it has washed over me previously because it is complex and not something easy to put my finger on.</span></p><p><span style="font-family: arial;">The view of "I am the expert on my condition" is of course entirely correct in principle. However, today I may be absolutely convinced that, say, I have extreme fatigue and that is the fault of low Cortisol. The answer is, therefore, to take an extra dose of Hydrocortisone. Maybe this works, maybe it doesn't. Let's say it does and I feel better, then what about tomorrow when the same happens again. We have to be 'expert' enough to know when our expertise runs out and we need help. To sit in front of a medical professional and say I am an expert is one thing, but caring for my health is a team effort and I need to listen to the medical view as much as they need to listen to me. When this team is working properly, I am in the best hands. There can be so very many reasons for fatigue (using this example) other than just low Cortisol.</span></p><p><span style="font-family: arial;">Then, am I a "patient" all the time, or am I only a patient when I'm seeing a medical professional (keeping that as a very broad term on purpose, basically anyone at a GP surgery/hospital/medical establishment). My view is really that I am only a patient when I'm seeing a medical professional, not all the time. </span></p><p><span style="font-family: arial;">On a day to day basis I'm just me, Carl, I happen to have a condition called Secondary Adrenal Insufficiency, or Hypopituitarism, or even Hypoadrenalism. I did say the language gets complicated! Just to explain:</span></p><p><span style="font-family: arial;">Secondary Adrenal Insufficiency, or SAI. I have no production of Cortisol from my adrenal glands for a 'secondary' reason, i.e. my Pituitary gland has malfunctioned, but my adrenal glands still function, just not fully.</span></p><p><span style="font-family: arial;">Hypopituitarism. Hypo, meaning "under" or "below normal" and obviously Pituitary-ism. In other words my Pituitary gland is under-performing. In fact it no longer produces the signals for my body to produce both Cortisol and Testosterone. </span></p><p><span style="font-family: arial;">Hypoadrenalism. I have seen my condition described in this way, the amalgamation of the two words probably need no further explanation.</span></p><p><span style="font-family: arial;">Then that brings me onto other language, if I am not a patient all the time, then on a daily basis do I "suffer" from SAI or do I just "have" SAI. This applies to all conditions of course, it doesn't bother me that much but I know it does some....</span></p><p><span style="font-family: arial;">So where does that leave me potentially being an "expert patient" then? Am I, do I want to be? I think the answer is yes I am an expert, although I might not express myself in this way. Do I want to be, hell no! Nobody wants to be.</span></p><p><span style="font-family: arial;">Everyone with a complex condition or conditions needs to advocate for themselves or have someone who can do it for them (family/friends etc). One needs to do the research to understand your own condition, tell people close to you about it and hopefully involve them in your care. Then you have some facts, some lived-in experience and maybe even someone who can help you voice all that.</span></p><p><span style="font-family: arial;">I've rambled on for long enough, but I'm brewing another blog post on what being an "expert patient" might actually entail. Watch out for that one....</span></p>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-46850235726464796472021-07-30T16:22:00.001+01:002021-07-30T16:22:27.174+01:00July 2021 - Man vs Hedge - the return!<p> <span style="font-family: arial;">As many of you who have been following my pituitary blog for some years will know, “man vs hedge” has been a theme from time to time. The basic tenet of the title was twofold, partly because it was a genuine challenge I was facing at the time….the hedge that is, and partly the struggle it gave me physically as a person with Adrenal Insufficiency (AI).</span></p><p><span style="font-family: arial;">Back in 2013 prior to my diagnosis I remember being much more physically fit and able to tackle strenuous jobs in the garden and then subsequent to my recovery in later 2013 and early 2014 how much harder gardening was. This manifested itself most obviously when I set about cutting our 70 foot long 9-foot-high conifer hedge in our old garden. It exhausted me.</span></p><p><span style="font-family: arial;">Therefore, I blogged about my struggles at that time and how I sought to overcome them. I feel another ‘Man vs Hedge’ blog coming on, even though we are 7 years down the line – but apart from the elapsed time, we are also now the owners of a brand-new set of hedges. I call them ‘set’ of hedges because they are very mixed. We have a hedge out the front of the house about 6 to 7 foot high and 20-25 foot long, a mix of ivy, hawthorn and various other. Then that morphs into a mainly bay laurel hedge which goes on for another 100 feet or so. The rest of that side of the garden is mainly trees as is the bottom of the garden, about 40 feet across. Then all along the other side of the garden is a privet hedge. The back garden has 6 foot fences all around, so the hedges only exist from 6 feet upwards! The privet is probably 12 feet at its highest, the other side varies up to about 8 feet. And I thought a 70 foot long 9 foot high conifer was difficult!</span></p><p><span style="font-family: arial;">How is my AI depleted body going to cope with all this hedge cutting I wonder? Why on earth did we buy such a large garden with so many hedges!! (answers on a postcard....)</span></p><p><span style="font-family: arial;">Part of the answer as to how I will cope, is using the correct tools. I have learned that when I used to cut the old hedge by hand with shears, I used to get a great finish on the hedge but realistically I’m just not able to do that any more. I need power tools and a good ladder, that’s my excuse anyway. So I have a good cordless long reach hedge trimmer and longarm pruner (the latter extends to about 4 metres tall). This means less time spent up a ladder wobbling about and less chance of me falling off said ladder because of being an idiot. Broken bones and AI are good partners so I understand......</span></p><p><span style="font-family: arial;">But the part that is more pertinent to this blog, interesting as gardening is, is how to cope physically. That is the interesting part, and now comes an annoying admission. For years I have mentally been in a place where I was ADAMANT that I do not need to pace myself. I can just throw myself at the task in hand and everything will be fine. Sadly that is not the case, and to be honest that isn’t probably just the fault of the AI. I am not getting any younger and moving house really hit me hard mentally and physically. I got through it but I learned a lot about myself, principally the admission that I DO have to pace myself.</span></p><p><span style="font-family: arial;">I’ve said before many times about my energy crashes and how they often happen late morning. Well, they continue to happen from time to time. I also had an escalating bad mood tendency with this low energy. It was because I was ignoring the signs and trying to push through it, rather than accept it was happening, take a break, and deal with it.</span></p><p><span style="font-family: arial;">Added to all this learning, I stopped working in March 2021, so amongst everything else going on (you know, global pandemic), I had another change to have to deal with….yes of course it was a nice change, but a change nonetheless. </span></p><p><span style="font-family: arial;">The end result of all this pondering is that rather than think “I’ll do some gardening for the next 4 hours, might nearly faint but it’ll be fine” I go out with a different mindset. This revelation manifests itself as “I’m going to do some gardening for 90 minutes or so, then pop in and have a cup of tea and a biscuit and an early Hydrocortisone tablet and a sit down for 20 minutes, then go back outside for another 90 minutes. In other words, I don’t set out to have such a long gardening session and I break that session up with a rest. It pains me to say it, but of course it is pacing myself. You’ll never guess what though, it works! (most of the time) It doesn't come entirely naturally, because I've never snacked between meals.</span></p><p><span style="font-family: arial;">It is of course blindingly obviously that it would work, but a combination of bloody-mindedness on my part and a lack of wanting to see the obvious did not help. </span></p><p><span style="font-family: arial;">I think it serves as a very good life lesson that you cannot blame everything on your condition, whatever it is. There are always other factors at play, not least my age….which I would rather not dwell on (I’m getting close to one of those ‘decade’ birthdays….), but it is a fact that I’m not getting any younger.</span></p><p><span style="font-family: arial;">The summary…it only took me moving house, a pandemic, leaving my job of 43.5 years, continual problems with physical exhaustion over 7 years…..to finally make me come to my senses. I need to pace myself in certain activities, mainly gardening. And we certainly have a lot of that to do in our new house, so it is a good thing I enjoy it!!</span></p><p><span style="font-family: arial;">Other than that, things have not changed that much. My pituitary gland will never work correctly and means I still take Hydrocortisone and Testosterone. I have lost a stone in weight for some reason (even with additional snacks), I’m only just over 9.5 stone or 61kg, this seems to be fairly constant and my consultant has done some checks to make sure nothing sinister is afoot. It isn’t. </span></p><div><span style="font-family: arial;">A couple of photos:</span></div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXioafKdC6_g2wAf0DPOxq23cjw_o-bepociWtwtnlZgFb_87_c3ICznXl0RhkcU3_QevTC0CCnlzNmJ0RwwDlXPQEIXZioENa8HRmXxpt5Y2V84uoFQa0TmkU2xqRgLbCrUthZrdIY30/s4608/IMG_20210728_122201.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4608" data-original-width="3456" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXioafKdC6_g2wAf0DPOxq23cjw_o-bepociWtwtnlZgFb_87_c3ICznXl0RhkcU3_QevTC0CCnlzNmJ0RwwDlXPQEIXZioENa8HRmXxpt5Y2V84uoFQa0TmkU2xqRgLbCrUthZrdIY30/w300-h400/IMG_20210728_122201.jpg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Couldn't very well have a blog about a hedge, without a (Stihl) hedge trimmer pic! This was courtesy of my very lovely work colleagues who got me some garden vouchers as a leaving present. The trimmer is battery operated and nearly 7ft long!!</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgivIx_VeKjQJvbgaSWz02qHR5rgiq9_c42NeZ0pUEfH5UzEgCb5O8LBZuOBaEF65dN1652eepsVusaPejePD5CzNvuTcTou0k8c7gw4J4KTZx4rwBIJg68pJfu8mg__zUc0Y3fGJcbVh4/s3648/IMG_20210728_162839.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2736" data-original-width="3648" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgivIx_VeKjQJvbgaSWz02qHR5rgiq9_c42NeZ0pUEfH5UzEgCb5O8LBZuOBaEF65dN1652eepsVusaPejePD5CzNvuTcTou0k8c7gw4J4KTZx4rwBIJg68pJfu8mg__zUc0Y3fGJcbVh4/w400-h300/IMG_20210728_162839.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Part of the hedge, this has gradually been reduced in height, but have to be careful as this is our neighbours hedge!</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJiGbfq64ggoXTL-Lv_DTomGtEb4xW9A_2jTbHbCpFtpydnQePde5LXU80aKovYP5IVjRhzGSphgBwtjyOPIeY_ljSHfjGyCU9Ckb4rN_DUylcX1s3X2c8KHlVdVkbJIM2Z0QSWMCxm8w/s3648/IMG_20210724_133550.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2736" data-original-width="3648" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJiGbfq64ggoXTL-Lv_DTomGtEb4xW9A_2jTbHbCpFtpydnQePde5LXU80aKovYP5IVjRhzGSphgBwtjyOPIeY_ljSHfjGyCU9Ckb4rN_DUylcX1s3X2c8KHlVdVkbJIM2Z0QSWMCxm8w/w400-h300/IMG_20210724_133550.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Hedge on the left is privet, fence is 6ft high, hedge varies but is 12ft high in places!</td></tr></tbody></table><br /><span style="font-family: arial;"><br /></span></div>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com1tag:blogger.com,1999:blog-2318466164146106470.post-26029833566901251972021-04-18T18:40:00.005+01:002021-04-18T18:44:42.888+01:00April 2021 - One foot in front of the other<p><span style="font-family: arial;">When I sit down to type out a blog, I don't think very much about it - I start typing and words come out, unfiltered. Process normally takes 30 minutes from the time of sitting down to publishing. I don't go back and change my fundamental story, only typos and any factual errors. What you see is what you get and today, you're getting a bit of a grumpy blog post!</span></p><p><span style="font-family: arial;">This weekend has been 2 days that were very different. One good and one not so good.</span></p><p><span style="font-family: arial;">I've heard so many times about Adrenal Insufficiency, "oh you have to pace yourself" and "there are days when you have to surrender and just take it easy". I am not one to take it easy on the behest of my condition nor do I wish to pace myself because I am forced to. Perhaps that isn't the best way of looking at things, but it is how I feel.</span></p><p><span style="font-family: arial;">Saturday was a good day. Got up early (Deb was at work doing admin for a Covid-19 vaccination clinic) so off out early for a 2 mile dog walk. Then steam mopped the downstairs and the bathrooms, and then cleaned my car all by lunchtime. In the afternoon, popped to a couple of local shops and did some weeding outside in the garden. Big relax from about 5pm along with a pizza and a film. All in all, a very good day.</span></p><p><span style="font-family: arial;">Sunday, it seems like there was some payback. Slept well Saturday/Sunday, had about 9 hours and my sleep tracker suggested 2.5 hours of that was deep sleep. Had a bit of a lay in, but I knew as soon as I got up that this wasn't going to be a good day. Ready to go out with Deb and the dogs by about 10:45 so I pre-empted that 'dragging' feeling in my body with an early 5mg of Hydrocortisone plus a couple of bits of chocolate. Took the dogs out with Deb and walked about 2.5 miles.</span></p><p><span style="font-family: arial;">Now here's the rub. Clearly if I was really not up to the walk then I wouldn't have been able to go at all, there are plenty of people a lot worse off than me at this point and wouldn't have gone at all. But that is kind of not the point, and I'm here to have a bit of a moan :-) So off we went, and I dragged myself around the walk, it was a beautiful day nice and warm and blue skies. It was to all intents and purposes a brilliant place to be, in our local forest. But for me, it was 'project drag my butt around a dog walk' and it was not very enjoyable at all. Deb knew what was going on all too well, I shut down and hardly speak and I lag behind. But through sheer bloody-mindedness I make it around the dog walk, shattered.</span></p><p><span style="font-family: arial;">Then having got home, I sit down and we have a bite to eat. Sometimes at this point I will recover, but not today. We had decided we wanted to go to a local garden centre, it doesn't open all winter and this is the first opportunity we've had to go since they reopened. So off we go, another drag myself around time and I didn't really take in all the lovely plants they had. But I made it. Back home about 4pm, time for another early Hydrocortisone dose and a sit down and more food. Finally this time, I can feel myself 'coming around'.</span></p><p><span style="font-family: arial;">By 5pm I'm feeling a lot more human and I'm up for the dogs final walk of the day which is only a 25 minute quick around the block job. This was the best I've felt all day and by the time I've come home, I'm back on the ball. A quick vacuum of a couple of rooms and I'm ready for a roast chicken dinner that Deb has been lovingly preparing. I'm sitting here now wondering why I couldn't have felt like this all day. Normally my Hydrocortisone intake is:</span></p><p><span style="font-family: arial;">7:30am 15mg - 13:00 5mg - 6pm 5mg</span></p><p><span style="font-family: arial;">But today:</span></p><p><span style="font-family: arial;">8:00 am 15mg - 10:45 5mg - 4pm 5mg</span></p><p><span style="font-family: arial;">I haven't taken any extra Hydrocortisone today, I just didn't think it would be worth it. I have done on previous occasions and it doesn't always work.....sometimes it does, sometimes it does not. Quite how I can burn through 15mg in 2 hours 45 minutes I don't know. Having taken my 8am dose today, I was feeling vague by probably 09:30, so I don't really see how extra Hydro was going to help.</span></p><p><span style="font-family: arial;">It is also worth noting this doesn't happen 'this bad' very often, probably a couple of times a month. Another couple of times in a month it happens, but is less pronounced. I suppose what I'm saying is about once a week I'll feel a bit sub-optimal.</span></p><p><span style="font-family: arial;">Having just re-read what I've written so far, the story does sound a bit 'whingey', I still did quite a bit today because I forced myself to do so. The morning dog walk was a real slog and I could have easily just stayed behind and sat on the couch. But then Deb wouldn't have felt safe to do that walk on her own as it is through remote forest, so it would have ruined her morning as well as my own. I wanted to go to the garden centre, as did Deb, so I wanted to make that happen. I really-really <b>DON'T</b> want to give into the enforced rest - in hindsight that is probably totally flippin' ridiculous. But I can't see me changing my feelings about that any time soon. I should probably just feel lucky that I am able to force myself to walk 2.5 miles, a lot of people don't have that luxury.</span></p><p><span style="font-family: arial;">Anyway, there it is, grumpy blog. A purpose of this blog has always been to get things off my chest, which this is a good way of doing. Whether this particular post actually helps anyone or resonates I don't know. But as the saying goes (and I quite dislike it....) "it is what it is"!!</span></p>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com1tag:blogger.com,1999:blog-2318466164146106470.post-42013325625059261322020-10-12T22:01:00.002+01:002020-10-12T22:01:45.899+01:00October 2020 - Something is going on!<p><span style="font-family: arial;">Hello again, time for my 2nd post of 2020, not exactly prolific but I've got a little bit to report.</span></p><p><span style="font-family: arial;">It has been on and off for a while, I've had these episodes of feeling a bit exhausted but nothing a sit down and an early dose of Hydrocortisone hasn't sorted out....maybe the odd extra dose of Hydro. If you remember a while back my daily dose was slightly raised by 5mg per day from 20mg to 25mg per day - 15mg at breakfast, 5mg at lunch and 5mg with dinner. As reported in my August 2020 update a pretty major event has happened, moving house.</span></p><p><span style="font-family: arial;">I reported last time that I had lost 3kg and my BMI was 23, well I've now lost 5kg and my BMI is down to 22. So I decided that enough was enough, and I thought I'd better contact a doctor to check everything was ok. I 'ummed' and 'ahhhed' as to which doctor to go for, whether it be my GP or the Endocrinologist who looks after me and after a bit of thinking I decided to go for the latter. It isn't uncommon if you've got a pituitary condition for another hormone to go a bit out of kilter, so that was my first choice. Having emailed and then chatted on the phone, some blood tests were ordered. The blood form came through the post and I made an appointment and had them done.</span></p><p><span style="font-family: arial;">The report that came back was that my Testosterone was high, because I hadn't long had my 12 weekly injection of that, but my Thyroid was at the 'low end of normal'. I looked up symptoms of low thyroid on the NHS website:</span></p><p><span style="font-family: arial;"><b>Tiredness</b> - definitely got this</span></p><p><span style="font-family: arial;"><b>Being sensitive to cold</b> - got this too</span></p><p><span style="font-family: arial;"><b>Weight gain</b> - quite the opposite of this!</span></p><p><span style="font-family: arial;"><b>Constipation</b> - thankfully not!</span></p><p><span style="font-family: arial;"><b>Depression</b> - nope!</span></p><p><span style="font-family: arial;"><b>Slow movements and thoughts</b> - yes, although I can also attribute this to low Cortisol (or low Hydrocortisone in my case)</span></p><p><span style="font-family: arial;"><b>Muscle aches and weakness</b> - definitely, although again, I could attribute this to much higher activity levels and moving house</span></p><p><span style="font-family: arial;"><b>Muscle cramps</b> - yes definitely, particularly in my hands</span></p><p><span style="font-family: arial;"><b>Dry and scaly skin</b> - yes, getting worse over the last couple of weeks</span></p><p><span style="font-family: arial;"><b>Brittle hair and nails</b> - well, at my age my hair is going to be on the run, one of my nails has split, which is quite unusual for me</span></p><p><span style="font-family: arial;"><b>Pain, numbness and a tingling sensation in the hand and fingers (carpal tunnel syndrome)</b> - Nope</span></p><p><span style="font-family: arial;"><i>Later symptoms of an underactive thyroid include:</i></span></p><p><span style="font-family: arial;"><b>A low-pitched and hoarse voice</b> - this can definitely be me at times!</span></p><p><span style="font-family: arial;"><b>A puffy-looking face</b> - definitely not, I'm thinner in the face than I was.</span></p><p><span style="font-family: arial;"><b>Thinned or partly missing eyebrows</b> - haven't really looked at this!</span></p><p><span style="font-family: arial;"><b>A slow heart rate</b> - I've always had quite a slow heart rate of 50-60bpm, but I have a graph on this in a minute.</span></p><p><span style="font-family: arial;"><b>Hearing loss</b> - if you ask my wife, she will tell you I never listen to her, is this the same thing?!</span></p><p></p><p><span style="font-family: arial;"><b>Anaemia</b> - don't know.</span></p><p><span style="font-family: arial;">So it isn't a slam-dunk 'I've got everything on the list', but I do have a fair few (the weight gain symptom versus my weight loss being the most obvious clash). But of course this is where hormones catch you out, because probably if I listed several other conditions created by the pituitary, I'd probably match quite a few of them too.</span></p><p><span style="font-family: arial;">The answer for the moment is to have another blood test in a month or so, to see if my Thyroid level is stable or worse and then take it from there. If it is lower then I can start Thyroxine tablets to see if this helps, or if the Thyroid levels are stable or better then we need to look at something else, don't ask me what!</span></p><p><span style="font-family: arial;">How about some data? Why am I losing weight and what about my heart rate. Like many people I wear a fitness tracker, so I downloaded some stats into Excel (other spreadsheet applications are available), and here is what I found.</span></p><p><span style="font-family: arial;">Weight loss. The obvious reason for losing weight is because I've gone on a diet, but I haven't. I haven't changed my food intake much at all for years, I eat a mixture of fairly healthy with lovely puddings and pizza on a Saturday night. Have I increased my activity level, well I would have said "no", but my fitness tracker says otherwise. Of course in the lead up to the house move and a couple of weeks after, activity levels surged. But they haven't gone back to normal despite me not doing anything radical (July was the house move):</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZsRRj60aPPxuwF2iEggeccHxJQz2gHYxTiMGqsrWytunPCTF8t4NoI5DgxnzSP9owCB6Uzi85bdnyuA3YDDxEyLVpWQnXakX2dxc3QDWOm4bJQDKqMHRqqPl_tSc3puefBEGvLXTBEyE/s780/20201012Steps.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="423" data-original-width="780" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZsRRj60aPPxuwF2iEggeccHxJQz2gHYxTiMGqsrWytunPCTF8t4NoI5DgxnzSP9owCB6Uzi85bdnyuA3YDDxEyLVpWQnXakX2dxc3QDWOm4bJQDKqMHRqqPl_tSc3puefBEGvLXTBEyE/w400-h217/20201012Steps.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">As you can see, I've gone from a number of steps averaging 6,000-7,000 to well over 9,000 and into the 10,000 range, quite incredible. My work schedule hasn't changed, I still walk the dogs as much as I ever did. However, all the little jobs around the house, the fact the garden is bigger than it used to, the house is slightly larger.....it all adds up. So my activity level <b>HAS</b> gone up and it has stayed up!</span></div><br /><span style="font-family: arial;">Heart rate, it said above in the symptoms that your heart rate could go down if you have low Thyroid. I don't have my fitness tracker set to constantly monitor my heart rate, however having downloaded the data off of it, it turns out that it does monitor it every 2 minutes at night and I'm assuming it does that in part to track 'light sleep' and 'deep sleep'. So I've analysed that data too:</span><p></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq7ZytHGmrs80D251M7wfdXkUExcpWP_5wGRcqqTIDjFjG1T4e7WiE3flSdqaigWK4Ap8YbM5TLt7jSAlf9d_48wibrQSzROkOXCOGxP5ZGuL_r9vhmTBph79CHzRdZw__b7YBRK2hceI/s807/20201012Heart.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="421" data-original-width="807" height="209" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq7ZytHGmrs80D251M7wfdXkUExcpWP_5wGRcqqTIDjFjG1T4e7WiE3flSdqaigWK4Ap8YbM5TLt7jSAlf9d_48wibrQSzROkOXCOGxP5ZGuL_r9vhmTBph79CHzRdZw__b7YBRK2hceI/w400-h209/20201012Heart.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">Well what do you know! I'm no doctor so I don't really know whether averaging 53bpm overnight down to around 50bpm overnight is really a big deal. However the data doesn't lie and it is showing a downward trend in my overnight heart rate. They say your heart rate lowers if you are very fit I think? What with me walking many miles a day now, perhaps that is it!!</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">If nothing else, it fills up a blog post. I'm not sure what the data tells me other than I really am doing more physical activity which can't be a bad thing. But perhaps I'm burning way more calories than I'm taking onboard, after all that is what a weight-loss diet aims to achieve! Break out the biscuits..... :-)</span></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">I could certainly do without feeling bouts of exhaustion/tiredness because they are extremely inconvenient. In fact they hark back to pre-2013 when I was first diagnosed, I had bouts of extreme tiredness back then plus quite a few of those other symptoms like cramp and muscle aches and weakness. I could certainly do with an answer that's for sure.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">I'll give you an update as soon as I have one!</span></div><br /><span style="font-family: arial;"><br /></span><p></p>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-40817745756487681422020-08-02T22:20:00.000+01:002020-08-02T22:20:06.394+01:00August 2020<font face="arial">Wow, nearly a year since my last post. A lot has happened since then, most of it in the last few weeks.</font><div><font face="arial"><br /></font></div><div><font face="arial">The pituitary update element of this post is that all is well. I've had the usual bloods done which all came back normal, the eye checkup which was fine showing no further degradation of my optic nerve and an MRI scan which confirms that he tumour is still not re-growing. So a good set of results which means that I continue down the line of being monitored but nothing to worry about. Which is great news!</font></div><div><font face="arial"><br /></font></div><div><font face="arial">In terms of day to day pituitary life, things are relatively normal. 2020 has thrown a lot at us so far, mainly in the form of COVID-19. The stresses this has brought have not really affected me as I am lucky enough to be able to work from home, so this switch has been easy. Pituitary patients fall into the clinically vulnerable group which meant I had to maintain stricter social distancing, but not full shielding. Life continued pretty much as normal, at least as normal as it ever could be under such conditions.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">The thing that really did affect me is the decision to buy a new house. One day back in April 2019, Deb walked the dogs past a house locally that had been renovated and remarked how nice it looked. We had been looking at houses for quite some time, but not that seriously. So in early May 2019 we decided to view the house and fell in love with it. But we didn't have our house on the market at that point and our 'dream' house sold quickly, and that was that. Or so we thought....</font></div><div><font face="arial"><br /></font></div><div><font face="arial">The estate agent called us back in November 2019 wondering if we were still interested, as the sale fell through. We were, but now things were getting serious, because it meant getting our house on the market. This happened fairly quickly and in early 2020 our house sold, our offer was accepted on the new house and everything seemed to be going smoothly. We would be moved in by Easter. However, lockdown happened......</font></div><div><font face="arial"><br /></font></div><div><font face="arial">To cut a long story short, following the end of the lockdown it took an age to get the move done for various reasons. We finally moved in near the end of July 2020. It really is a fantastic house and very much a dream house for us. It was a 1955 bungalow which was extensively converted into a very modern chalet bungalow. We are very lucky....but what does this have to do with a pituitary blog. Well dear readers, stress.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">When you updose Hydrocortisone it is referred to as 'stress dosing'. I don't think I had really appreciated this term until the last couple of weeks. I frequently refer in this blog to my occasional crashes, well when you are moving house, the stress of that plus the unusually high physical and mental activity really exposed how clever the human body is and how reliant it is on Cortisol, or Hydrocortisone in my case. To say I was flagging a bit most days is an understatement. I am just at the end of 2 weeks off, the first week was leading up to the move and the second week was following the move. Up and down to our old loft, packing boxes, lifting boxes and constantly thinking about something. Getting up early and going to bed late. Then moving in and cleaning and unpacking and lots more brain activity. My body was just burning through Hydrocortisone like no-ones business. I took an extra 5mg most days and a little bit more than that some days.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">I have lost 3kg in weight due to a combination of the physical and mental strains. I also found myself really needing extra food. A stupid thing to say really, because if you are working hard, you burn the calories and need to fuel up, but I'm just not used to it. My body aches and to be honest, anyones would....of course it would. It is just another stabbing reminder that I rely so much on the Hydrocortisone to keep me going. I can confirm that on the day of the move the one thing that wasn't packed and was very much with me was a stash of pills and my Hydrocortisone injection. We were only moving around the corner, but that is plenty far enough to get into real trouble if my medication wasn't to hand.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">Hopefully, I will put the weight back on as my BMI is around 23 which is fine, but I was happier with another couple of Kg on me. Not doing 10,000 - 15,000 steps daily will probably sort that out, my normal daily is around 8,000. The day of the move I did nearly 25,000.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">Moral of the story, don't be afraid to updose if there is good reason. I'm back at work tomorrow, so on a much more 'normal' schedule for me, let's see how that goes!</font></div><div><font face="arial"><br /></font></div><div><font face="arial">Photo is me and the dogs relaxing after mowing the lawn today</font></div><div><font face="arial"><br /></font></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii1tQyHqMCVM2Xz3tc-xF1oiQIimQ6S280N0Q1fM7G9jv4kB3t9PfbTHva_V02nFOvtL35Tfvk02TEnU-sdOCN8iUANcXOpUaHxbTrgnG8_1izQ31jhhaq_Jqo9GDsgSOUAvmlS_Ij2bk/s2048/IMG_20200802_154434.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii1tQyHqMCVM2Xz3tc-xF1oiQIimQ6S280N0Q1fM7G9jv4kB3t9PfbTHva_V02nFOvtL35Tfvk02TEnU-sdOCN8iUANcXOpUaHxbTrgnG8_1izQ31jhhaq_Jqo9GDsgSOUAvmlS_Ij2bk/s640/IMG_20200802_154434.jpg" width="640" /></a></div><font face="arial"><br /></font></div><div><font face="arial"><br /></font></div>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-12586640704945896122019-08-15T22:00:00.003+01:002019-08-15T22:04:23.637+01:00August 2019<span style="font-family: "arial" , "helvetica" , sans-serif;">Hello there.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A quick update, and a conundrum. I went for my Endo checkup recently and all is well, I had the normal raft of blood tests done beforehand plus a few extra and all of them came out within normal ranges. Even my growth hormone, but more on that later....</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Over the last few months, as I've reported in the blog before, I have had more instances of Cortisol crashes for no obvious reason. I had explained this in a previous Endo appointment and the doctor suggested upping my morning dose from 10mg to 15mg, which I did. It definitely did help and it appears I am one of those people who burns more Cortisol (Hydrocortisone in my case) in the morning, as I stuck to my normal 5mg lunchtime and 5mg teatime dosage. So largely the problem was fixed, but still those annoying crashes would appear.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I knew already, but I was reminded at my recent Endo appointment, that replacing Cortisol with Hydrocortisone is never going to be perfect. I can never know exactly how much Cortisol my body will need and when, and although I try and mimic the correct dosing I am going to get it wrong from time to time. Coming back to that growth hormone subject though, this is monitored regularly because GH is a hormone that can tail off in time with some people with Adrenal Insufficiency and cause similar symptoms to a lack of Cortisol. However, it appears that my growth hormone is in the upper zone of the normal range.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I got to thinking what else could be at play, and I had an idea. This is the part where I need an expert to chime in, because the idea is a bit 'out there'. Like many people I wear a fitness tracker, an 'Amazfit Bip'. The Bip tracks steps, heart rate, sleep patterns and has GPS onboard.....you know, all the regular fitness tracker stuff. I have had it since last March and I have been very pleased with it, in fact it has hardly ever been off my wrist since. It is the sleep tracking in particular I noticed, it tracks total sleep per night and the amount of that sleep that is 'light sleep' and 'deep sleep'. Now, I don't honestly know how it determines 'deep sleep', I can only assume that it is a combination of movement (or lack of it) and my heart rate that makes it determine how deep my sleep is. It seems I go in and out of deep sleep during the night. I've done a graph below of my averages per month since I've had the tracker.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You can see that I am one of the lucky people that gets between 7.5 to 8 hours sleep per night, and the orange line shows the percentage of this sleep that is deep sleep. The deep sleep peaked in June to August 2018 and has been steadily coming down ever since. But then in July this year, I noticed my deep sleep shot up, some nights it was up to 40 to 50 percent of my total sleep per night. It has tailed off a bit this month as you can see.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBQ2dnasLBFqYgwOUJzz5tjonORKx463HbjeGTH7ThqOvZ89UB4ar9uBgbshhQ0V2cmRLHg0f6AwtsRg4dG2ZhkN2CMICI5IKDVXfaT7G8LZrpeqUpuljADEJ-0TNz7hfBFuVkzx5u3Q/s1600/20190815_sleep_tracker.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="753" data-original-width="1141" height="420" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBQ2dnasLBFqYgwOUJzz5tjonORKx463HbjeGTH7ThqOvZ89UB4ar9uBgbshhQ0V2cmRLHg0f6AwtsRg4dG2ZhkN2CMICI5IKDVXfaT7G8LZrpeqUpuljADEJ-0TNz7hfBFuVkzx5u3Q/s640/20190815_sleep_tracker.jpg" width="640" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My Cortisol crashes had been on the increase throughout 2018 and into 2019. But in the last 6 weeks, I don't think I have had one crash, not one! This coincides with me getting a lot more "deep sleep", is this a coincidence, is there any science that would correlate here??</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My lifestyle is pretty constant throughout this period, a job on the same days doing the same thing, some days out at dog shows being very active and on my feet, walking the dog, same diet etc. No real change in what I'm up to to suddenly make me get more deep sleep.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Because I can't find anything on the Amazfit website that specifically states how the gadget measures "deep sleep", I can't really hand on heart say that this may be the cause, can I? Not unless my deep sleep tails off and the crashes start again. If this is in any way related, am I just in fact bog-standard knackered due to a lack of deep sleep, nothing whatsoever to do with my Hydrocortisone/Cortisol levels.....how hilarious would that be!!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But anyway, there is my theory for what it is worth, I'll leave it with you!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">One thing I can say for sure, is that I am very much enjoying my lack of crashes.</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com2tag:blogger.com,1999:blog-2318466164146106470.post-6563834141215505842019-04-15T17:30:00.001+01:002019-04-15T17:30:40.645+01:00April 2019 - How's the new dosing going?<span style="font-family: "arial" , "helvetica" , sans-serif;">I thought I would do a quick update on my progress on my new dosing of 15-5-5mg of Hydrocortisone as mentioned in my last blog.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Plus, I saw something on my patient record recently - my original Cortisol level at initial diagnosis. The reference range for Cortisol at 9am (this differs slightly depending what you read) is 180-620 nmol/litre. In reality you'd hope your Cortisol level would be towards the higher end of this range at 9am because your body will have kicked in Cortisol production in the early hours getting you ready for the day ahead. I had my first Cortisol blood test back in February 2013, blood taken around 11am. My Cortisol level was <b>40</b>, it was described on the form that came back from the lab as "very low". I should say so, my GP described the level as "how are you still walking"!! (RIP Dr Newman, he was a brilliant and lovely GP)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(there were 4 levels highlighted by the lab in all, Luteinising Hormone at 0.7 when it should be 3-8, Follicle Stimulating Hormone at 1.6 when it should be 1.4 to 18.1 and Testosterone at 0.4 when it should be 8.4 to 28.7)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Having Adrenal Insufficiency is a condition you do need to constantly manage, taking a set dose of tablets every day isn't always going to work. I'd mentioned in my last blog about feeling fatigue a bit more than I used to and when I spoke to my Endocrine team in December 2018 they suggested increasing my dose from 10-5-5 to 15-5-5 daily, which I have done. Without a shadow of a doubt, it has made a positive difference - I've been on the new dosing for 4 months now. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I still do a lot of reading about Adrenal Insufficiency as well as participate in various Internet forums and I am always learning. The main issue is trying to sort the wheat from the chaff in terms of advice that is good and not so good. At the end of the day it may come down to personal preference, but it is sometimes difficult to navigate through all the information out there. As an example.....</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"I've got a headache" - this is a common thing that anyone in the entire world could experience. Someone like me with a specific medical condition also has to consider "is my headache due to my condition, or is it just a headache". It sounds stupid, but it does happen. Of course any number of things can cause a headache, and upping my fluid intake and a few Paracetamol will sort it out anyway. But it is a flippant example.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">More realistically, "I'm feeling tired/fatigued" is what I face. Of course everyone gets tired for lots of different reasons, but the same scenario comes up, why am I fatigued and is it because of my AI. It is annoying. I have to think "i</span><span style="font-family: "arial" , "helvetica" , sans-serif;">s this fatigue reasonable?" </span><span style="font-family: "arial" , "helvetica" , sans-serif;">What have I been up to, have I been walking for miles, doing heavy gardening, am I mentally under any stress. If I answer "yes" to any of those things, depending what time of day it is, do I need to take a bit extra Hydrocortisone.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Say it is 09:30, I took my 15mg dose at 7am and suddenly I'm fatigued (this is a fictitious example, I don't think it has ever happened). I shouldn't be because my morning dose should be in full swing, am I ill (harbouring a bug that hasn't manifested itself yet) and should I increase my dose? Probably I would for just one day take an extra 5mg to see what happens.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Say it is 11:30, I took my 15mg dose at 7am, but here I am fatigued again. This time I've had a long walk with the dog, it's a bit hot outside. Fair enough, my dose ran out early so a drink and a sit down, early HC dose and everything is fine. No problem with this scenario, this is a real example and it happens a lot less now I'm on 15-5-5.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It is the former scenario that could cause issues though, not the latter because that is fully explainable. In the former scenario, let's say the next day I'm still not obviously ill but still not feeling 100%, what do I do. Do I take extra Hydrocortisone and see where that leads me? I know the buzzing feeling that too much HC gives me, I never feel that which must be a good thing. So the chances are the 10-5-5 dosage wasn't quite enough and the 15-5-5 is just about enough, because it has made my fatigue symptoms better. But what those odd days that don't make sense.....the advice in some quarters is keep on top of your HC dose, "too much won't harm you in the short term". I agree with that, but I'm also cautious of that approach. There has to be a reason for low Cortisol symptoms, so if they persist then the first port of call has to be your doctor of choice, that's how I feel anyway.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A very se</span><span style="font-family: "arial" , "helvetica" , sans-serif;">nsible suggestion I had recently was that if your Hydrocortisone replacement is robust and correct, then you shouldn't have frequent 'crashes' or under replacement issues. So making sure your baseline dosage is correct is very important. Easier said than done of course, I consider my version of AI fairly straight-forward even though it annoys me at times. Other people with similar conditions have a much different and more complex experience.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A bit of a ramble here, but for me the summary is I'm generally feeling a lot better on my new dosage. I was advised I could move to 20-5-5 If I needed to, although perhaps I'd go for 15-10-5mg - indeed on the odd occasion where I know I'm having a hectic emotional/physical day, I have done and it helped. But where is that line you cross between not quite enough HC and too much, a difficult line to tread. I know how I feel about it, but it is a complication I could really do without.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Finally I wanted to share a diagram that I stole from Amy Bojar, I hope she won't mind, but I really like it. It is a good visual aid of what symptoms a person with AI might have and when these are 'just' low Cortisol and when they are more critical and suggesting an Adrenal Crisis. I wanted to share this because I've found it useful and I have now saved it on my phone to refer to, "just in case". I'll admit, I find it hard to read the last few entries at the bottom..... :-(</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com4tag:blogger.com,1999:blog-2318466164146106470.post-42763142197921064802019-03-05T19:27:00.000+00:002019-03-05T19:27:41.991+00:00March 2019 - Generally ok, but more variable<span style="font-family: "arial" , "helvetica" , sans-serif;">I've not updated this blog for a few months, so I thought it was time I did.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It is now 6 years since I first went to the doctors in February 2013, and nearly 6 years since the operation to remove my Pituitary Macro-Adenoma. For the first 9-12 months I went through that recovery stage that many secondary adrenal insufficiency patients go through. Getting used to taking hydrocortisone tablets, getting the right dose of testosterone (only 2 replacement hormones in my case) and letting my body recover after years of incorrect hormones.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Then the next couple of years were pretty settled, I took a standard dose of 10mg of Hydrocortisone in the morning, 5mg at lunctime and 5mg in the evening....and this worked fine. Except for when I was undertaking heavy physical tasks like gardening or very long walks, all pretty predictable. But that has changed over the last year or so.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have a very good endocrine team at my local hospital and I mentioned my 'less predictable' hormone status to them and they did some blood tests to make sure everything was fine and I still have 12 to 18 month MRI scans to check the tumour is behaving, and it is. I have no tumour regrowth so far, which is brilliant. However, I find myself running out of Cortisol more frequently, mainly by lunchtime, so something has changed.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The endocrine team suggested changing my dose, which I have done. I am now 15-5-5 rather than 10-5-5 and in the main this seems to have sorted me out. They said that in fact if I wanted I could go to 20-5-5 if I needed, but I haven't done this yet. However, with adrenal insufficiency (AI), it has really brought it home to me how difficult this condition can be to manage. It really isn't a simple matter of taking a set dose of tablets every day, because you never really know what your body is going to demand.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A lot of patients often complain of fatigue, which I previously hadn't experienced much of. But I do find myself having lunchtime naps and generally feeling the fatigue a bit more. It is intensely annoying, because I hate 'surrendering' to any medical condition and it stopping me doing what I want to do. I am mostly able to push through it, but that is probably me being stubborn!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I recently had a bad cough and cold, which many people have had during the winter of 2018/19 and it was quite a bad one. For the first time since I have had AI the bug really threw me off balance. I woke in the early hours shaking like a leaf, this was far from normal and I wasn't cold. I recognised this as a precursor to an adrenal crisis, so I woke my wife to help me get a drink and take some emergency Hydrocortisone at around 4am. After about an hour the tablets did kick in (I took 30mg straight off) and I stopped shaking. I felt awful with the bug and took over a double dose for the whole day, approaching triple dose. For several days I increased my Hydro to avoid a crisis, it was a real close call as to whether I reached for the emergency injection that night. I did the right thing I think, but injecting wouldn't have been wrong. The whole episode shook me up a bit, it made me think "what if I hadn't had anyone there for support". Being alone and with AI is a scary thought.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I got over the bug after a couple of weeks and my Hydro dose has settled, but is this any worse a reaction than it would have been 3 years ago, who knows. I just feel that for some reason my hormone levels/requirements have changed and I suspect this is normal. It is just that people with normal production of Cortisol never notice because their body just does what it needs to do automatically. Oh how I yearn for "automatic" sometimes!!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Despite the above 'moan', things really aren't all that bad. I have a condition and largely it is manageable by taking some tablets and getting a testosterone injection every once in a while - it could be so much worse! I think the main take-away message for me, is don't ignore what your body is telling you and trust your own judgement. There is no-one more expert than <b>YOU </b>in understanding how you are feeling and what is normal for you. You won't die from taking a bit extra Hydrocortisone for a while if you need to, but not taking enough when you really need it is quite another story. I should caveat that by saying I am not a doctor, and you should discuss changes in Hydrocortisone dosage with your GP or endocrine specialist.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">That last bit is also key, you need a specialist/expert you can trust. I am lucky in that I have a brilliant relationship with my local hospital team, but I know from reading other blogs and support forums, not everyone is so lucky. The NHS here in the UK are amazing and do amazing things, but sometimes patients and doctors need to work better together to make that relationship happen, the fault can be on both sides. You need that relationship and if you can't get it, complain and change doctors. You can't afford not to.</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-18047453604220868252018-09-28T19:56:00.000+01:002018-09-28T19:56:17.100+01:00September 2018 - a bit of an update<span style="font-family: "arial" , "helvetica" , sans-serif;">Well, it has been a while since I last updated this blog.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The main reason is that there really isn't much to tell, which is of course a good thing. If you are still reading this and have a pituitary condition or adrenal insufficiency from whatever cause, then you'll know there really isn't a textbook to manage this condition. I think that is the basis for this update.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I mentioned before in the blog that the whole point of me taking Hydrocortisone daily is to try and mimic the body's natural production of Cortisol, or lack of it in my case. Apart from the overarching objective of keeping me alive, the Hydrocortisone helps the body deal with stress, keep blood sugars steady and maintain blood pressure. The natural cycle of producing Cortisol is our Circadian Rhythm, this raises Cortisol in the early hours of the morning to its peak around 8am and then gradually tails off during the day with a slight peak approaching 6pm.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">However, I take 3 tablet doses a day around 7am, 12:30pm and 6pm, which cannot hope to totally mimic the graph above, but it does its best. So I do my best, and some days I'll get it wrong - at least that is what it feels like.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The simple fact is if you take the tablets when you normally take them, it doesn't always work. I have to take extra sometimes, adjust the timings sometimes.....it really is just a game of "what will today bring". The difficulty I have had and still have, is accepting this. It is a lot easier for conditions that just require a tablet to be taken per day, and that's it. With adrenal insufficiency you have to accept you'll need to adjust the dose or the timing of the dose, sometimes every day of the week and that it ISN'T your fault. I've done nothing wrong, but for reasons I can't always fathom my body needed that extra Cortisol kick today. It takes a lot of self-monitoring for the signs and when I've done that well, I've been aware of an improvement in how I feel.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The summary of all that rambling is, I'm doing fine but it does require some thought some days rather than just plough on regardless, and I'm not brilliant at having to do that.</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">Something that always occurs at this time of year is 'Man vs Hedge' and this year is no different. The hedge has had its annual prune and this year it took many weeks between starting and finishing, but that was more because of the weather and my availability than anything else. I now know before I start that it will be hard work, 5 years-worth of experience has taught me that. Just take the extra Hydrocortisone and take it easy - I could have reached this decision quite a few years ago, it isn't that hard!</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">Finally, I've been for all my regular checkups and everything is still on track, MRi shows no tumour regrowth, blood tests ok, eye clinic done and optic nerve still stable.</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-1087627488458242017-12-07T16:07:00.003+00:002017-12-08T17:41:04.158+00:00December 2017 - an Endocrine checkup<span style="font-family: "arial" , "helvetica" , sans-serif;">Well, it has been a good while since my last pituitary update.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My previous Endocrinologist appointment was in late February 2017, so </span><span style="font-family: "arial" , "helvetica" , sans-serif;">I was due for my 6 monthly checkup which ended up getting slightly delayed until this week. This was to be my first appointment where I didn't see my regular doctor, and although this made me slightly nervous (with no reason, Maria the Registrar who saw me had all the knowledge she needed) it was good to see someone different who didn't know my history. In a way this made her more thorough because she didn't know my history so had to ask more questions.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We reviewed all my blood tests, Testosterone levels, PSA and all sorts of other levels which were all ok. So that is always a good start. But one thing my Endo always asks is how I am feeling in myself as this is a critical indicator of my condition regardless of what "the numbers" are saying, and the new doctor asked me this too.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As it happens I haven't been feeling entirely 'normal', or at least normal for me. It isn't anything I'm worrying about, but certainly worth mentioning. I take the fairly regular dose of 10mg at breakfast, 5mg at lunchtime and 5mg at teatime - ever since I was diagnosed. This style of dosing for replacing Cortisol is never going to be perfect, but has worked up until the last few months. I believe what has thrown it out slightly is that I have gone part time. In my job I sit at a desk, so I am very mentally active but not physically active. I used to have 2 days per week (Saturday and Sunday) when the reverse was true, I was much more physically active and used to have more frequent Cortisol 'lows'. With my part time working, I now work 3 days per week, so my 2 days per week of not working has turned into 4 days. So I have introduced more physical activity into my lifestyle and I believe this has upset my Cortisol equilibrium - if such a thing exists!!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have been finding that my morning dose sometimes runs out at 10:30 to 11am, some 2 hours earlier than normal. This in turn sometimes throws my whole day out and I'm out of sorts all day - to me it is not obvious why I am feeling low on Cortisol, I don't feel like I have been doing anything that stressful. As a result my wife tells me I am a lot grumpier and short tempered, I struggle to find words, I physically slump as if exhausted and I generally become quiet and withdrawn, all classic signs for me of low Cortisol. Taking my lunchtime dose early does help, and sometimes is all I need. But equally this doesn't always work and I can get low again during the afternoon. It is all a bit hit and miss, so doesn't make managing my dosage that easy.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So the doctor has ordered another MRI scan to make sure my tumour is behaving itself - I was due another one anyway. She has also requested some more bloods including a first thing in the morning Cortisol blood level, to make sure my 10mg HC dose is bringing me up to the required level.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So between these two tests, we'll see what they say. In addition to that she has suggested I take 15mg for my breakfast dose rather than 10mg and see if that helps. She asked me a few questions about my general health and took my blood pressure and decided that 15mg can't hurt. I'll report back and see how that goes.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I still have the 12 week Testosterone injection which seems to serve me well. The last 2 injections in particular have gone brilliantly, in that apart from a slight bum ache for a day or so, they have not been painful at all. The previous couple of injections were really very painful. I had a long chat to the practice nurse and the Endocrine Nurse Helpline of the Pituitary Foundation about the pain. Essentially because this is a large oily injection, it sometimes struggles to dissipate into the muscle - and my buttock muscles aren't that massive.....one time when a big bum helps apparently!! The key is to warm up the injection (which I've always done), make sure the injection is done really slowly and make sure the muscle is relaxed. As I said 2 injections in a row were really painful and the pain from the 2nd one took a week to subside, I even resorted to paracetamol which is unusual for me. So let's hope I continue with minimal pain injections in the future!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So in summary, replacing Cortisol is hard! But as the medical guide says Cortisol is "essential for life", so it may be hard but it's got to be done :-)</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-81111350356104561552017-07-30T21:49:00.001+01:002017-07-30T21:49:57.684+01:00July 2017 - the Cholesterol story<span style="font-family: Arial, Helvetica, sans-serif;">Well here's a story, my Cholesterol. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Back in late 2011 I had one of the (then) new fangled NHS healthchecks. Your GP invites you to get some blood tests to check for various things but chiefly to assess your risk of getting type 2 diabetes and to check your Cholesterol - I'm sure it is much more comprehensive than that, but still. You go in for an appointment, you get asked lots of questions, get weighed, blood pressure etc. Generally I came out as pretty healthy, the one area of concern was my level of LDL (or 'bad') Cholesterol. At that point it was 6.61 mmol/L, which whilst not catastrophic was a bit higher than ideal. My 'Total cholesterol:HDL ratio' was 4.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I was not overweight, lived a pretty good lifestyle (non-smoker, low drinker) and eat a reasonable diet - but having a high Cholesterol irked me a bit. So after careful consideration, I ignored it for a while (I used to do that a lot.....). In fact, what I did do, is give up butter and instead started using soya spread. It was no big deal and tasted just fine to me.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">But then in early 2013, I was diagnosed with having a Pituitary tumour and I had many blood tests....and the test in April 2013 showed my Cholesterol had now gone up to 7.34 mmol/L What! I couldn't believe it, I gave up butter and my LDL Cholesterol went up! However, this time I could blame something, my pituitary tumour. To be honest the tumour was felt to be the culprit for many things.....a headache, feeling tired, feeling dizzy, lost my keys - answer was simple, bloody pituitary tumour. Some of the issues were probably linked to the tumour, but it became fair game really, blame it on the tumour.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I do believe that Cholesterol or lipid balance can be affected by the Pituitary gland. Whether mine was causing the issue I don't know. But by now I was pretty miffed, I gave something up that I really quite liked, and it made it worse. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So this time I had a chat to my wife and we decided that a diet change would need to happen. Following my recovery from the tumour and getting my hormones back in balance I begun to do a lot more walking and started pilates classes. So exercising more regularly, tick! I started to eat almonds most days, which are supposed to be a good source of fat. My LDL Cholesterol was measured a few more times and still hovered around the 6.5 mark, my </span><span style="font-family: Arial, Helvetica, sans-serif;">Total cholesterol:HDL ratio creeping up to 4.8</span><span style="font-family: Arial, Helvetica, sans-serif;">. Stubbornly refusing to go the right way.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">At my second NHS healthcheck back in February 2017 my Cholesterol was still giving the GP cause for concern, so that was it, full blown war.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As I said before, my diet was never bad, but there is always room for improvement, so Deb started cooking meals with a lot more vegetables, what few ready meals we had have been cut right out. I now love eating kale, broccoli, courgettes, butternut squash, sweet potatoes. I have for many years had 'Coffee Mate' in my coffee rather than milk, it turns out that this is really high in fat, much worse than semi skimmed milk. So I now have semi-skimmed milk in my coffee. I have cereals for breakfast, so now instead of semi skimmed milk I have either Oat Milk or Almond Milk.....I really like the taste of both on cereal (horrible in coffee though). So I now have very little milk. Then I noticed that over the last few months my weight had crept down from just over 70kg to around just over 68kg.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The GP had asked for another Cholesterol test to be done 4 months after the NHS healthcheck to see how I was going and if a change of diet could do anything. Miracle of miracles, my Cholesterol is down to 5.66, my HDL is 1.43 and my ratio is back at 4. Hurrah!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Looking at my electronic medical record on EMIS, which only goes back to 2006, my LDL was 5.97 and since then consistently higher, so this is the first time in 11 years it has been lower. My Calculated 'LDL cholesterol level' is 3.88 which is still higher than the 3 mmol/L level it is 'supposed' to be.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So what to make of all this. Can I do what I always used to do and say "my Pituitary gland was to blame", well no, I don't think so. I think that a sustained period of more exercise and a better diet and cutting down milk consumption, butter and cutting out Coffee Mate completely has finally made the difference.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I think the point I am trying to make, is partly a smug one but also partly trying to show just how hard it can be to do something about Cholesterol. Perhaps genetically I am predisposed to a higher level? My wife eats much the same diet as I do, her HDL ratio is 2 and her various Cholesterol levels were said to be "perfect" by the GP.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Two things are for sure, I want to limit my exposure to higher stroke and heart attack risk and I don't want to do that by taking statins. I'm not out of the woods yet, because I have to keep all this up and my bloods have to show that progress, but I am very pleased with the results....I've even lost a couple of KG's into the bargain, which was never the plan.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So not exactly a pituitary blog as such, who knows, maybe it can shoulder the blame just a little :-)</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-61691922956942749002017-06-14T21:58:00.000+01:002017-06-14T22:04:39.163+01:00June 2017 - listen to your body<span style="font-family: "arial" , "helvetica" , sans-serif;">Hello dear reader, if there's any of you left out there.....</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It has been 4 years since my pituitary tumour was removed. During late May and June each year since I have come to reflect on those few weeks in 2013 and the effect they had on my life, then and now.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">On the one hand very little has changed, life goes on. But adrenal insufficiency (AI) does require management, not as much as some conditions - but I am thankful that as long as I take a few tablets each day the condition is entirely treatable. I take 10mg of Hydrocortisone with breakfast, 5mg at lunchtime and 5mg at dinner time - in our house that is around 7am, 1pm and 6pm. Of course the process of replacing the natural hormone Cortisol with Hydrocortisone is on the one hand brilliant (the body can't tell the difference between the two) and on the other hand replacing a totally natural feedback loop with an arbitrary dosing regime, is tricky.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am a person who obeys rules (well, ahem, mostly), and if a doctor tells me to take pills at breakfast, lunch and dinnertime.....then that is what I will do. However experience tells you otherwise. This experience is what I wanted to share today.....</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am a member of both the Pituitary Foundation and the Addison's Disease Self Help Group (ADSHG), both have forums where people can ask questions and for support from peers. The ADSHG has the more active forum, even though I haven't got Addison's Disease (Primary AI)....it is a great forum for anyone with secondary AI like me. The advice that is frequently given out on the ADSHG forum is "listen to your body", and it is by far the best take-away message for todays blog. I'm no medic, so I'll say before I carry on, I'm going to talk about adjusting the timings of my dose but taking the same amount of HC each day and only very rarely taking more than 'prescribed'. If you have AI and find yourself regularly taking much more HC than you started with, then you need to discuss this with your GP and/or your Endorcrine team and get a day curve done or other investigations......</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Timings......I've found that the timing of my "lunchtime" dose is <b><u>critical </u></b>to how my day goes. I do a typical desk job when I'm at work, I sit down all day typing on a laptop, sending emails and answering the phone - my regular dose ALWAYS works for my work days. At the weekend I am much more physically active, and this makes a difference. I've been lucky enough to go part time at work, so what was only 2 days a week more physical activity, this has turned into 4 days a week. This seems to have tipped the scales for me, between sometimes having a 'Cortisol crash' on a weekend morning to regularly having one on my days off. So the simple solution, take the lunchtime dose about 11am. This transforms my day, no crash - the bizarre thing is I mostly still take the dinner time dose at 6pm, maybe 5.30pm. Also on a day off, I might not take my first dose until 7.30-7.45am. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I take the breakfast dose a bit later, the lunchtime one earlier, and the dinner time one much the same time. How that works I don't know, but trial and error and experience tells me it does. So I go with it. That is what the ADSHG forum has taught me, listen to your body.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There are also rare times when that doesn't work. A couple of weeks ago, I felt out of sorts for a few days. There was no obvious reason, no extra emotional stress, I wasn't walking 15 miles a day......but nonetheless I felt really tired, and for the first time in years I had a minor breathless panic attack and profuse sweating and shaking. I used to get these years ago before I was diagnosed - I know now that this was a sign of very low Cortisol. So even though it was around 9.30pm, I downed 5mg extra HC and put an extra 5mg dose in for the next 2 days. The sweating/shaking was gone within 30 minutes and I slept like a log, HC really is a miracle drug!!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Another learning from the ADSHG, if you are going to 'up-dose' don't take extra large doses in one go, spread the doses out during the day to avoid the lows. So I dosed at 7am, 11am, 3pm, 6pm and 10pm (10mg-5-5-5), an extra 5mg for those days. Again, despite taking such a late dose (10pm) I had no trouble sleeping...... I suspect I was harbouring some kind of bug, which never came to anything, who knows.....but I do know that without that extra dose I would have felt much worse. I went back to my normal dose on the 4th day and felt fine again. That lesson again, listen to your body. Of course extra HC won't solve every problem, but in the case of someone with AI, you are ruling out one possible cause of your malaise.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So 4 years down the line AI can still confound me, but I'm slowly learning sometimes it is ok to be confounded, go with altering the timing of the dose or if necessary up the dose a bit on a rare day. If it solves the problem, then not understanding why my body is demanding different treatment is fine, just accept it does and get on with my day!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Listen to your body of course applies to everyone.....stop and listen. You never know what you might hear.</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-1695521272015114282017-02-05T20:49:00.002+00:002017-02-05T20:49:27.832+00:00February 2017 - I've still got AI!<span style="font-family: Arial, Helvetica, sans-serif;">Hi there</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Well, it is just about 4 years since I had my blood tests that first pointed towards me having an issue with me not producing Cortisol. And these 4 years later I still have Adrenal Insufficiency (AI), not surprising really. There are apparently very rare cases where pituitary function can return, but unlikely in my case. So no problem, I keep taking my daily dose of Hydrocortisone, 10mg with breakfast, 5mg at lunchtime and 5mg around 6pm.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">On a day by day basis, I pretty much forget that I have AI, I just keep taking the tablets. I wouldn't have it any other way really, just keeps the normality in my life. But on a day like today, I'm reminded that my body isn't infallible. I was taking down some curtains, curtain rails and pelmets, really not strenous work you'd think. However I seem to have an achilles heel when it comes to working with my arms up for long periods of time unscrewing and supporting fairly weighty items. I know everyone is different but for me it burns through the cortisol like no-ones business. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I returned home and immediately knew I was flagging with that "low Cortisol" feeling, unmistakable. So at around 5pm, a sit down, an early 5mg Hydro dose and a quick bite to eat. Sorted me out within 30 minutes. So no real drama, but as I have reported in the past in 'man vs hedge' I have come to recognise those signs. In a way, lugging heavy shears above my head at a hedge and undoing curtain pelmets are probably similar physically.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Just having that reminder annoys me - I consider myself pretty fit but clearly not immune to certain types of physical stress. But ignoring it won't make it any better, far better to recognise the signs and do something about it. I'm lucky in that my condition is so stable and my medication needs don't change from day to day, but when they do change the situation can creep up on you.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I'm due a review with my consultant in a few weeks, to check my bloods are in order. I've also got my NHS healthcheck next week, to check out other blood tests I've had done to measure cholesterol and blood sugar to check my risks for, amongst other things, type 2 diabetes. Glucose levels were fine (4.8) but cholesterol is probably a bit high. So we'll have to see what the surgery have to say about that!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So in summary, I've still got AI, it is part of who I am now..... :-)</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-61846932604531942782016-08-31T21:45:00.001+01:002016-09-02T09:02:05.934+01:00August 2016 - Pituitary update<span style="font-family: "arial" , "helvetica" , sans-serif;">Well what's this, an actual pituitary update in my pituitary blog, whatever next.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It is now well over 3 years since my pituitary tumour bit the dust, and I am still under the watchful eye of my Endocrinologist. Making sure that my blood tests, replacement hormones and residual pituitary tumour are still in the shape he expects them to be. That's the thing with the NHS, they spend a lot of time and effort getting you diagnosed, a lot of time and effort to fix you, but then they don't just wave you out of the door and say "go get on with it"......no, in fact I have had so much follow up. Something you can't ignore in the value our NHS gives us. I have had countless blood tests, several MRI scans, visits to my Endocrinologist....all costing valuable time and money. All to make sure that I am in the best health I can be and that the tumour doesn't come back and bite me. I think that we perhaps take the NHS a bit too much for granted, but that's another story.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Here's another 'hidden' cost of my treatment. I am 'lucky' in that I have a condition that means I get free prescriptions - I assume it is because Hydrocortisone keeps me alive. This benefit isn't means tested, it is mine by right in the current system. This means I avoid the £8.40 every time I go to the chemist. I take 2 Hydrocortisone tablets every day, rarely a bit more than that. My prescription gives me 122 tablets every 2 months, there's 30 in a packet. So in simplistic terms, every year I would have had to pay 6 lots of £8.40.....not the end of the world to keep me alive. But unfortunately this drug is one of the one's that went 'generic' several years ago and far from saving the NHS money, it actually costs them a fortune. You can see from the link below my packet of Hydrocortisone actually costs the NHS £78.50</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://www.evidence.nhs.uk/formulary/bnf/current/6-endocrine-system/63-corticosteroids/632-glucocorticoid-therapy/hydrocortisone">http://www.evidence.nhs.uk/formulary/bnf/current/6-endocrine-system/63-corticosteroids/632-glucocorticoid-therapy/hydrocortisone</a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I pay nothing for my 3.5 packets of tablets each month, I could have paid £8.40 on a prescription, but the NHS pays £274.75 for 3.5 lots of £78.50. Scandalous! I understand on the continent the equivalent for a similar drug by a different manufacturer is only a few quid.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Anyway, rant over, what about me. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My PSA (Prostate-specific antigen) test was fine, my Testosterone levels are fine, my Cortisol is fine (I'd soon know if it wasn't) and my MRI scan shows that the residual amount of tumour left over has not grown at all since the last scan. So it is all good news. I will still be on 6 monthly check-ups until 5 years since tumour removal and then if all is still well, then I can get less regular check-ups and only go back if something is specifically worrying me, like vision changes or headaches (both a sign that the tumour could be re-growing).</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I don't have to worry about the pituitary side of things. Yes I still have to keep taking the (expensive) tablets and injections, and I still have to carry around my emergency Hydrocortisone injection kit, but that is just part of 'me' now. Fitness wise, I continue to creep ever forward, I'm still doing the Pilates, loads of walking and a bit of light weight training (I think the last one is more for vanity than anything else, but it makes me feel better). I sometimes forget that at my lowest ebb before diagnosis, I couldn't walk for 2 miles in half an hour without feeling faint....probably 2 miles would have taken 45 minutes not 30 minutes. But anyway, looking forward not back.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The future is bright.......</span><br />
<br />Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com3tag:blogger.com,1999:blog-2318466164146106470.post-23369507622735264012016-08-30T19:57:00.000+01:002016-08-30T19:57:15.820+01:00August 2016 - Man vs Hedge year 4<span style="font-family: "arial" , "helvetica" , sans-serif;">Well, another bank holiday weekend, another Man vs Hedge blog post. You'd surely expect such an update by now. This years is going to be slightly different, because this year it isn't all about Cortisol it is more about accepting that sometimes the right tools for the job make all the difference.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This year I didn't have any issue with energy crashes, Cortisol lows or any of that nonsense. I adjusted my dosing appropriately so although I didn't take any extra during the day, but I did split my dosing differently and spread it through the day in smaller regular doses. In that respect, preparation and accepting that a change in dosing WOULD be necessary (not "might" be necessary, or "lets see how it goes"). Accepting that made life a whole lot easier.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But what made the whole task SO much easier this year was the use of a better ladder and a better hedge trimming device. Sadly Deb's dad passed away earlier this year, but he had a battery powered extendable hedge trimmer. We have our own corded electric hedge trimmer which never worked on our hedge, it made a right mess of it. So for years I used manual hedge shears as they did a much better job, I didn't expect any electric trimmer to be up to the job, conifer hedge seemed to immediately blunt our trimmer. But for whatever reason, I tried the 'new' hedge trimmer out and it was like a hot knife through butter, it was a complete revelation. Plus there was no trailing lead to a) have to plug in and get in the way and b) Deb didn't have to worry about me cutting through the power lead (I never worried about cutting through it obviously). Tools for the job pictured below:</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpw65fr5MGMYQNTKPXXw0jwbUVMq0Ps0ohe8IoOMX_D3yu04pi2de2jsyoHNGdpUQ0VR8iN6OlahyphenhyphenHSQYTay1ln5lPWve6bROi_KX0GYDUbl5XtHerVFRfjJEyhqihm54go0XAqF6hT24/s1600/20160827_111001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpw65fr5MGMYQNTKPXXw0jwbUVMq0Ps0ohe8IoOMX_D3yu04pi2de2jsyoHNGdpUQ0VR8iN6OlahyphenhyphenHSQYTay1ln5lPWve6bROi_KX0GYDUbl5XtHerVFRfjJEyhqihm54go0XAqF6hT24/s400/20160827_111001.jpg" width="300" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I tried the new trimmer out just to see how it would fare, and rather than just "try it out" I ended up trimming about 40ft of the hedge so quickly it was amazing. So when it came to the bank holiday weekend just gone I managed to completely do all of the side and top of the hedge over 2 days. I did get a bit wet as it rained on the Saturday, but never mind. This also included a huge amount of next doors brambles which were becoming very invasive so I was really useful to be able to hack through them with the long hedge trimmer without needing to be too close and get tangled up in the thorns.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I think the hedge is finally conquered and with the right tools it will be much easier to manage now. It might sound weird, but I have enjoyed my battles with the hedge over the years, but being able to just buzz straight through the growth is so much easier, particularly across the top - the top is probably 6 foot across, so only being 5 foot 6 tall and the hedge being around 7 foot tall it is normally quite a reach.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So maybe the last Man vs Hedge update? We'll see :-)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have an Endocrinology appointment tomorrow, just a checkup to make sure everything is ticking along fine. I've had some blood tests and an MRI scan, so should get the results of those. I'm not expecting anything but good news, but may post a quick update later in the week.</span></div>
Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com3tag:blogger.com,1999:blog-2318466164146106470.post-51371668326905290952016-08-01T09:23:00.000+01:002016-08-01T09:23:48.251+01:00July 2016 - A sharp scratch<span style="font-family: "arial" , "helvetica" , sans-serif;">My latest post is pituitary related because it regards a journey made whilst I was having loads of pituitary related blood tests, but this post is not directly about pituitary issues but about overcoming the fear of needles, of both injections and blood taking. The fear of many things isn't necessarily rational but scary nonetheless. Also I have been reading a book called <a href="http://chimpmanagement.com/the-chimp-model/the-book/" target="_blank">The Chimp Paradox</a> by Prof. Steve Peters and I realise that I absolutely used his techniques but before I had even read his book. The purpose of writing this piece is in the hope it might help someone, showing how I overcame my fear and hope it helps someone else do the same. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The mainstay of The Chimp Paradox book is of course the Chimp part of the mind, it is an emotional and irrational beast. The book also talks about the human and the computer parts of the brain. The human is us and the computer is where we can store things that both the Chimp and the human can reference to help them make sense of the world. Essentially you program things into your 'computer' so they become the 'norm' and then when an event happens the pre-programming takes over. I don't usually read self-help type books but the Chimp Paradox is a very good one and although I haven't read it all yet, I have gone over the parts I have read several times.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">For me, when I used to have blood tests I used to nearly pass out. I don't really know why I used to fear the blood test so much, it wasn't like I had good reason to, I'd never had a bad experience. Prior to 2013 when my pituitary journey kicked off, I had very few blood tests as I had no long term medical conditions. My main fears were:</span><br />
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<li><span style="font-family: "arial" , "helvetica" , sans-serif;">The blood test site wouldn't stop bleeding and I would bleed to death</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">My arm would somehow not cope and drop off</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">It would be REALLY painful</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">After the blood taking I felt I could barely use my arm as I was convinced I would start it bleeding </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Some kind of long term damage would have occurred</span></li>
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<span style="font-family: arial, helvetica, sans-serif;">Just typing the above out makes the whole thing seem ridiculous, but that is what I felt. So in 2013 when the blood taking was very frequent it was pretty inconvenient to keep feeling this way. By the time I had come out of hospital for the 2nd time in June 2013, I had already started to be de-sensitised by blood taking, but I was still scared. I suddenly realised that I had a chance to put this right, I had some real hard evidence about what this blood taking was doing to me. That is, not a lot really!</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">So I sat myself down and wrote out some of the above statements about blood tests and what they meant to me (the list was a bit longer than the above) and I looked them all through and spoke out loud to myself. "Did my arm actually drop off at any point", "did I bleed uncontrollably"...... As you may guess, the answer was "no" to every question. It is true that I did bruise a bit on quite a few occasions, but even so, no permanent damage was done. I felt I had to get this evidence clear in my head.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It took quite a while for me to go through all my silly statements and rationalise them. What I was doing was essentially programming my computer with facts. Previously all the irrational stuff was coming from the Chimp.....all those statements about my arm falling off were emotional things, the Chimp ruling my mind and telling me lots of falsehoods. Getting some facts programmed into my 'computer' helped me settle the Chimp down and me too. I started going to blood tests much calmer, knowing that actually if I just relaxed things would be much better. The "sharp scratch" actually did become less painful (I'm not sure if that was a physical thing or a mental thing) and I pretty much never bruise now, I'm convinced this is because I am more relaxed. I also think that even though the phlebotomists that I see are very good, I think it must put them under pressure if they see someone stressing out in front of them. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There was a further complication, in that when I was in hospital I had to face an extension of blood taking, which was having cannulas inserted into various parts of my hand/arm/leg. This was actually far worse than the injection, because these needles lived inside your veins for ages. I do still struggle with the cannula concept a bit, but again I have evidence that they didn't kill me. So I had to do the facts-based chat with myself on this subject too.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So for me, confronting my fear with loads of facts based on experience of what had happened in a couple of dozen blood tests and getting those facts embedded in my brain is what took away my fear of needles. Don't get me wrong, I don't breeze into the blood clinic shouting "whoopee, a blood test", but I view a blood test now as very much a transactional thing. Nothing to worry about. It has completely transformed this part of my life.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Of course the above tips won't work for everyone, perhaps I was lucky. If you hate needles, it is worth trying to understand exactly why and then try and confront those fears with some facts based on some evidence of what has actually happened to you. You never know, you might end up like me, a more sane person when faced with the sharp scratch.</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-55781247554822277232016-05-08T21:40:00.000+01:002016-05-09T16:25:38.237+01:00May 2016 - why have a pituitary blog?<span style="font-family: "arial" , "helvetica" , sans-serif;">I was reminded today that I have a blog - one that I started nearly 3 years ago when I was first diagnosed with my pituitary tumour. But why did I start it?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Well I think at the time, it was cathartic. I had a lot on my mind and I decided that writing it down might help me make sense of all that was going on. After all, I had just had my first ever stay in hospital, my first ever surgery and my first ever tumour! I had never kept a diary, and still don't, so sharing my inner-most feelings wasn't a natural thing to do for me. But once the words started flowing I decided why not make them into a blog. Which indeed I did.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My initial reasons once the first few posts had come out, was that actually it made keeping friends and family updated really much easier. They could read my blog and see how I was doing, so it took away those awkward conversations where someone was not sure what to say in case they got it wrong. They could read the blog, see that I'd been having a hard time and get straight to the point. But then I realised as the weeks ticked by, it really helped at a practical level to look back and see what happened and when. Often I'd think "when was that appointment" or "what exactly happened at that point" - and there it all is captured in my blog.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I know for sure now if I hadn't written it all down, whether in a diary or a blog, I would have forgotten some elements of the story and although it might sound a weird thing to want to remember, it does help make sense of events in the here and now. Something of which I will come onto in a moment.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I also had the grand idea that writing this all down and putting it on the Internet might actually help someone. I've had various conversations in the last 3 years that prove on a few occasions it has indeed been helpful for people. That I am pleased with, certainly when I started Googling my symptoms soon after it first was reported that I either had a pituitary tumour or something wrong with my adrenal glands, I found web pages that talked factually about the conditions. But what I did not find so easily was 'real people' who had the condition and how it made them feel. Searching now only 3 years later, I do see more such blogs and I am much more into Twitter now and much feedback can be found there too.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So if you are reading this blog, then I hope I am making sense :-)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So even now, can my blog help me see something that I might not otherwise have done? Well yes, it can. I had a brief Twitter conversation with someone (hi @hwganendodoc !)</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> who had just found the blog, so it made me go back and have a look at a few of my early posts, these two in fact:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>My hospital stay after my pituitary operation</b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://chpituitarytumourblog.blogspot.co.uk/2013/07/may-2013-hospital-stay.html">http://chpituitarytumourblog.blogspot.co.uk/2013/07/may-2013-hospital-stay.html</a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>The events leading up to my 2nd stay in hospital</b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://chpituitarytumourblog.blogspot.co.uk/2013/07/june-2013-another-trip-to-hospital.html">http://chpituitarytumourblog.blogspot.co.uk/2013/07/june-2013-another-trip-to-hospital.html</a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, post number 1 was a very scary time, no doubt about that. But although it signalled a difficult time for me, the overall feeling looking back on that time was that it was about healing and getting better. Getting better from something I barely knew I even had, bearing in mind I only had my MRI scan on 18th May and on the 28th May I had the operation to remove the tumour. All a bit of a whirlwind. But it was a positive period of time, fixing me up and looking forwards.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Post number 2 is altogether different. It is about living with <a href="https://en.wikipedia.org/wiki/Adrenal_insufficiency" target="_blank">Adrenal Insufficiency</a>. The harsh fact, which I often overlook, is that my pituitary gland was damaged by the tumour and as a result will probably never fully work again. This means I do not produce enough of my own Cortisol and have to take Hydrocortisone tablets on a daily basis. I don't really think about it that much, pop some pills every day and that is that. I know that if I stopped taking the tablets I would get ill, which of course I wouldn't do on purpose. But when you get unwell, as I did in the events leading up to my 2nd hospital stay, adrenal insufficiency can turn something quite innocuous into something life threatening.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now it really stops me in my tracks typing that last sentence, because I don't think of myself as having a life threatening condition. But reading back my post from that hospital admission and chatting it through with my wife earlier, really made me remember just how unwell I was. "All" I had wrong with me on the surface was a throat infection (sinusitis and pharangitis) nothing that a few paracetamol wouldn't cure. However, in a 'normal' person their body would also trigger a very clever endocrine system into action. The body would recognise that it was under stress from an infection and the pituitary gland would tell the adrenal glands to pump out cortisol and keep on doing it until the body reported back to the pituitary gland that all was well, and to pack it in (a feedback loop). However, my body didn't do that, so a simple infection put me in hospital. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I realise now that the sickness and diarrhoea I had was actually my body not coping and having an addisonian or adrenal crisis. The fact I can't remember a fair bit from that day (so my wife tells me), the fact that when she spoke to the doctor on the out of hours service about what was happening he immediately phoned A&E and booked me a bed and told my wife to drive me immediately to hospital was a pretty big clue. The fact that when I got to hospital I was immediately put on IV antibiotics and fluids, that I also had hyponatremia and partial renal failure don't paint a particularly good picture of the day.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So what reading my own blog has helped me realise is that although I'm not going to worry about my condition any more than I have been for the last 3 years, I most certainly should not take for granted what needs to happen if I feel myself getting into an adrenal crisis. I carry quite a few Hydrocortisone tablets around with me and I carry my emergency steroid injection kit with me too. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">If you are still reading by now, and have adrenal insufficiency and you haven't got an injection kit - blooming well get one! This is something I have read quite a few times from patients, they have been diagnosed with adrenal insufficiency (even primary AI, Addison's Disease) and have been several months without an injection kit. I can't overstate how much you should get one. I've never had to use mine yet, but I'm guessing it will happen one day, or my wife will have to use it on me. If I had an injection kit way back in June 2013, would my outcome have been any different, who knows. Speak to your endocrinology team and I'm sure they will sort you out with a kit, don't rely on your trusty GP to know you need an injection kit, GP's are absolutely brilliant, but you may be the only AI person in the entire population of their patients, so they may not be as clued up as your endocrine team.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What I most certainly know now, is that after my first stay in hospital I started to recover quite quickly given the operation I had just had. But during and after my 2nd stay in hospital </span><span style="font-family: "arial" , "helvetica" , sans-serif;">I felt really really awful. It took much longer to recover from an AI event than it did from major skull-base surgery. If that last fact doesn't drive it home to me then nothing will.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So there, that is another blog I've got off my chest.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">For the 3rd anniversary of my pituitary tumour operation I shall raise a glass to the event from somewhere in the Mediterranean sea, on a cruise ship. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Cheers!</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-46104353877377158362016-02-07T21:49:00.002+00:002016-02-07T21:49:30.332+00:00February 2016 - 3 years have passed<span style="font-family: "arial" , "helvetica" , sans-serif;">I noticed that it is nearly 3 years since my initial blood test that flagged my low Cortisol. The blood test was on 7th February 2013 and the doctor rang me (actually my wife) on the 8th February causing panic in the Hall household. 3 whole years, what a lot has happened in that time.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I still think back to all the complications that I had and ignored prior to that bloodtest, such as the near passing out, the strange vision issues and the lack of body hair. But 3 years on, the life I now lead is much healthier with the right hormones within me - it is amazing what a difference two daily tiny Hydrocortisone tablets per day can make to a person. For me the main difference being much more being mentally alert and not having panic attacks and nearly fainting due to low blood pressure. Just those two tablets to keep me going, it is a minor miracle of modern science really.....not that long ago - maybe 100 years - I may not have been so lucky. Actually just looked it up on Google, it seems Hydrocortisone was only invented in the 1940's by this man <a href="https://en.wikipedia.org/wiki/Percy_Lavon_Julian">https://en.wikipedia.org/wiki/Percy_Lavon_Julian</a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The biggest difficulty I face, and anyone replacing hormones faces, is trying to mimic the way the body would naturally produce Cortisol. It is still a bit of a mystery to me and to medical science, under exactly what circumstances the body will pump out Cortisol. Yes there are definite instances such as stress and infection that causes a raised Cortisol output, but for me I can still hit a Cortisol low unexpectedly, when the body has decided to burn through a tablet dose quicker than usual. Recently having faced bereavement of a loved one (my father in law) this was of course expected, the brain is going through a lot of hard work and amending my dosing regime is understandable and warranted.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Actually I didn't need to take extra doses, but I needed to amend the times. I normally take a dose on waking which is around 7am weekdays and 8am at the weekends and then around 12:30 to 13:00 and around 18:00 for the final dose. Instead although I still take the first dose at the same time, I take the lunchtime dose at the time I <b>NEED</b> it. That may sound strange to anyone who hasn't got adrenal insufficiency, but essentially I take my next dose when my body says 'enough', which this last week or so has been around 11:30 to 12:00. Then my 'teatime' dose gets taken again when my body asks for it, which for instance today was around 16:15. I have learned that Hydrocortisone stays in the body for around 5 hours. So 8am until 13:00 is 5 hours, but today with the extra work and stress I'm putting my body and mind through I burned through it quicker. I find that in the evenings when I am less physically active I get by without issue - sitting here now at 21:45, five and a half hours after my last dose I feel fine. I seem to have a greater tolerance in the evenings, and I don't wake up dragging my knuckles across the floor either, or else I'd consider slipping in an extra dose. I will have to monitor myself closely on Tuesday though, that is the day of my father in laws funeral.....never been through one of those whilst on Hydrocortisone - it is going to be a long day!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So all in all, the last 3 years has been eventful, but I am in a good place. Let's hope it stays that way.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-35300746277675230402015-09-06T22:02:00.001+01:002015-09-06T22:03:14.225+01:00September 2015 - Man vs Hedge year 3<span style="font-family: Arial, Helvetica, sans-serif;">Well, you might imagine that after all this time, I'd have mastered the art of hedging wouldn't you. Not quite.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As it was bank holiday weekend last week, it was the traditional hedge cutting weekend, but in fact it was never going to be that much of a hedge weekend because in fact I needed to spend time around my Dad's house clearing it out before the final house clearance on Thursday last week. So I only had one day at cracking the hedge and one day was never going to be enough to do it all. So in my own inevitable way I went at it with some vigour.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The good thing was that following last years false start when the shears I was using proved utterly useless we bought some new one's and these came out of the shed in pristine condition, razor sharp and raring to go. So I did the main face of the hedge and hacked away at it with quite some speed. In fact within about 3 hours I had completely finished the whole side of the hedge. It was a never seen before feat to be honest, I felt absolutely fine and a massive bag of conifer rubbish was produced in no time. Definitely a sign that my body was fitter than it was and my Cortisol was lasting pretty well.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">On the Cortisol front, I haven't had a serious energy crash since I can't remember when exactly, I think it must have been early June. The hedge activity became a subject of my yearly blog because it was the one thing absolutely guaranteed to run me out of Cortisol but it certainly didn't on this occasion. However, the hedge wasn't finished yet....so it could prove to bite me before the end. But the big positive is the way my Cortisol levels are holding up no matter what I throw at my body and this is good news. I'm not exactly sure why, but I assume my body is used to the Hydrocortisone regime I have got myself in and the drug is being absorbed correctly.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So today was another few hours, and whilst doing the side of the hedge would have done me in once upon a time, the top of the hedge is an absolutely killer. When freshly cut the hedge is about 6.5 feet tall, it puts on between 1 to 2 feet every year and more than that in places. I am 5 foot 6. So there I am balanced up a ladder leaning across the top of this hedge with secateurs, pruning saw, lopping shears and a 'long-arm' aluminium pole trimmer thing. It is physically tiring at the best of times and this time although I didn't have a full on Cortisol crash I did start to feel the beginnings of one. So a sit down mid afternoon with a bite to eat and a cold drink (squash!) and I got though to my tea-time dose of Hydrocortisone without a big deal. It was a close call between being normally worn out and a Cortisol event. But I didn't push it and stopped at around 4.30pm and took the spoils to the tip. The top of the hedge still isn't finished, but there was significant growth, so not surprising. Growth not just of the hedge, but of ivy and next doors brambles growing up through the hedge.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So the hedge does take a slight win today, with my win on the bank holiday weekend, we'll have to call it 1-1. With all to play for when the final part of the top is done, maybe this coming weekend depending on the weather.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So the learning? I still need to get a bit fitter!</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-28040556008886318162015-07-12T22:00:00.000+01:002015-07-12T22:00:11.917+01:00July 2015 - Latest check and update<span style="font-family: Arial, Helvetica, sans-serif;">Well hello there.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This year is rushing past, I can't believe it is nearly mid-July. I love this time of year and don't want to it move past this point, but such is life!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This Friday 10th July, I had an endocrine MOT - time to go and review my body's performance over the last few months. In the last few weeks I've had some blood tests and an MRI scan to check the pesky tumour is still behaving itself. The short story is that I'm doing fine and everything is doing very well - which to be honest is fantastic news. I didn't really stress about it beforehand, but when your consultant says to you all the good things, you can't help but be a bit relieved. In fact I had probably underestimated how much of a relief it was, silly really but only natural I suppose. There were a couple of main reasons....</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">1. The eye</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">As I have reported before, I have slightly more fuzzy vision in my left eye. I noticed this last year when I had some new glasses made up and I think in the back of my mind it was either because the pituitary tumour had damaged my optic nerve previously or in fact because it was regrowing and starting to squash my optic nerve again. Now the latter scenario was pretty unlikely because in early 2014 my MRI scan showed that there was only a small residue of tumour left. The chances of that getting so large in a little over a year that it would once again impinge on my optic nerve was pretty slim, although not impossible. So hearing from my consultant that they had compared the 2014 scans against the latest scans and detected no change in the amount of residue tumour left, was very good news.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I think I have sussed the eye thing out now. It probably was damaged by the tumour pressing on the optic nerve, the damage was done before I even realised. After the operation the focus (no pun intended) was on my visual fields and sorting my hormone balance out. Not my actual vision. So life went on, I had got used to the vision I had. Then during late 2014, I had my eyes checked and changed prescription and at that point expecting better vision realised that my vision was still a bit blurred in the left eye. So only at this point did I really notice it. The good news is that the eye consultant doesn't think it is degenerative, it is just damage that occurred and that's that....and if he is right then it's fine. I'd rather not have the damage, but I have grown accustomed to my eyesight now and it hasn't got any worse since I've noticed it. So I will go back to the opticians at some point and see if they can tweak my prescription to get me a bit better. It is amazing how the brain can compensate though, looking out of both eyes I rarely notice anything. It is only when you cover the right eye up and really focus (pun intended) on my vision that I realise it isn't quite up to par. So now's the time to move on and forget it I think!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">2. The fear</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I think the fear will always be there, these tumours can regrow. But they are benign and I am being monitored regularly, so even if it does regrow it isn't going to get as big as it did before and cause as much as of an issue as it did. So a valid worry, but not one I'll lose a lot of sleep over</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Overall though I have been feeling REALLY well. It is something we all hesitate to say because we perhaps believe as soon as we say it out loud the gods of 'sods law' will crash down upon us and bring in a reality check. Well there you go, I've said it out loud now, although I did wait until I passed my MOT. I'm not sure exactly why, but as soon as I went on holiday in early June, I haven't had one cortisol related energy crash. I was having them fairly regularly ever since, well ever since for years.....it is only since mid-2013 I've realised what they are. The only thing I have changed is having my morning dose a bit earlier, as soon as I get up and before my breakfast rather than after my breakfast. It isn't long, probably 30-40 minutes difference in dose time. I try to do the same with my lunchtime dose. Can it really make this much difference, who knows, but I haven't changed anything else. This has spurred me on to get a bit fitter still if I can, I'm not going to go mad, but if my body is up for a bit more then I'm going to push it a bit harder and see what happens. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Blood test wise I'm also on track. I've been having Testosterone injections since late last year instead of the gel and they seem to be working fine as well as being much more convenient than rubbing gel on every day. Apart from the inconvenience, the gel was also beginning to really irritate my skin, so the injection makes more sense. It does spike my testo levels somewhat, because you go on a steady downwards curve for the 10 weeks the injection lasts, then 'boof' you have the injection and the levels whoosh up. It is a bit sore in the bum-cheek for a couple of days too, but nothing too bad (I have to moan a bit, I'm a man). My latest testo graph did make me smile a bit, I have had 3 blood tests at the end of the 10 week periods to check the hormone levels, and the most recent test was just after the injection - obviously levels were going to be a lot higher. Check out that zero reading back in February 2013!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">What man wouldn't want a Testosterone spike like that! It is 'manufactured' of course, but nonetheless the fact the graph is steadily on the rise, shows that my lowest levels are now not so low....and my consultant said that despite how the graph looks I am within the right range. It is most probably also contributing to my feeling of wellbeing. I don't think you can underestimate the effect testo has on mental wellbeing as well as physical wellbeing...being able to build some strength is one thing, but being much more positive is pretty useful too.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So the summary is, feeling pretty epic.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Another thing I noticed was that for a couple of years before diagnosis I had a couple of brown patches on the side of my face and neck, real skin discolouration. It looked like a part of my skin had a sun tan, when the rest of me was much whiter. I now realise this was a symptom of lack of cortisol, more commonly seen in Addisons Disease. The pigmentation has faded almost entirely now, not completely gone but hopefully it will. It was only recently I even realised it was connected. I wonder how many more things will manifest themselves? Me forgetting to bring things downstairs my wife asked me to, forgetting to buy something at the shops my wife asked me to.....they're all getting blamed on lack of cortisol now. For as long as I can get away with it.....which knowing my wife, won't be long!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So I'm off, catch you again soon! Cheers, Carl</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-16198168870921123572015-06-18T21:50:00.000+01:002015-06-18T21:50:32.543+01:00June 2015 - the old and new me<span style="font-family: Arial, Helvetica, sans-serif;">So what have I been up to lately, well enjoying life that's what!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I've been on a cruise to Norway and this week been on a couple of days out and I've never felt better. To illustrate a point I found a picture of me from 2008 wearing the same suit on a different cruise ship as the suit I wore last week on holiday. To set the scene, in 2008 I knew nothing of what a pituitary gland was, nothing about Cortisol and the important job it did for your body. But what I did know was that I had some funny eyesight problems, which had been investigated by an eye specialist. He had a good look at my eyes and found nothing amiss - but I know now that what I was experiencing was some early disturbance of a pituitary tumour pressing on my optic nerve.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">During the few years preceding my diagnosis how many times did people say to me "are you okay, you look a bit pale".....and of course I turned around to them and said "yes, I'm fine". Well any changes would have been very subtle and neither my wife nor I would have seen them, other people were far more likely to spot when things didn't look quite right. On the left below is me from 2008, I can see now that I look very pale and much thinner in the face (in 2015 much rounder face and ruddy complexion....and I hadn't been on the wine at that stage of the evening). I weigh pretty much the same now as I did in 2008, so I haven't put any overall weight on. On the right is me last week, I've even got a bit of a double-chin....but oddly that makes me kinda happy! On the left it looks like my neck was so thin I couldn't even make my bow tie sit straight.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyx9XeADvOTYgtqujqc7GZrcY53ryzDc0pehCq4mxcVb3nhH4wXmY4irxcMLmTH8BNvetFbQ8Yt163StOQBSSCgj_qUI0fEwvO6NGHLhz8Ejd9n-TA0W5bJgEgf-1ZV8-oxVT3BnbBnAE/s1600/CarlDoubleTake.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyx9XeADvOTYgtqujqc7GZrcY53ryzDc0pehCq4mxcVb3nhH4wXmY4irxcMLmTH8BNvetFbQ8Yt163StOQBSSCgj_qUI0fEwvO6NGHLhz8Ejd9n-TA0W5bJgEgf-1ZV8-oxVT3BnbBnAE/s640/CarlDoubleTake.JPG" width="640" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Okay, I can make a joke of it now and it isn't exactly a scientific study. But both my wife and I looked at these two photo's and it shocked us a bit. In the 5 years between the photo on the left being taken and the tumour coming out, how much bigger did it get....how much less damage would it have done if it had been discovered earlier. Makes you wonder. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The first time he saw me my Endocrinologist said I presented looking like the typical pituitary patient, very pale and thin faced, now I really see what he meant!</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-53517513468328405412015-05-26T09:24:00.001+01:002015-05-27T21:58:03.199+01:00May 2015 - two whole years!<span style="font-family: Arial, Helvetica, sans-serif;">Yes, you heard it right. Two whole years since my pituitary tumour was removed, the 28th May 2013. So what then, does two years mean anything?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">No not really - as time whizzes by the memories of all but the most horrible bits fade away, the times when I was less than 100%, those days/weeks leading up to diagnosis are a blur and only the most memorable spikes remain. In chronological order I think it boils down to this:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">(nothing much pre-hospital at all, it just hadn't sunk in or seemed real)</span><br />
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<li><span style="font-family: Arial, Helvetica, sans-serif;">Sitting with Dr Kar, him telling me it was definitely a pituitary tumour, showing me an MRI scan of my head and pointing to the mass. Saying it would be best if it were removed.....he'd refer me to a neurosurgeon</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Sitting on the hospital bed being admitted, going through the consent form with the registrar and the things that could in theory go wrong with the operation</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Being given a 'nil by mouth' sign by my bed (advanced notice the operation was a reality)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Being wheeled down a corridor in my bed to the operation</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">The anaesthetists</span><span style="font-family: Arial, Helvetica, sans-serif;"> trying to get a line in me to put me out prior to the operation</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Waking up after the operation and looking into the face of the nurse in the recovery room (forgotten the name, will never forget the face)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Finding I had about 5 cannula's</span><span style="font-family: Arial, Helvetica, sans-serif;"> hanging out of my body</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Leaving hospital (which was good, but scary)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Getting diabetes insipidus (bad)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Getting admitted to hospital a second time with an adrenal crisis (also bad)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Waking up with an oedema in my legs (definitely not good)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Sitting back in my living room after the 2nd hospital visit feeling the weakest I have ever felt in my life</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Getting the results of my short Synacthen test confirming I didn't make enough Cortisol and probably never would</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">End of 2013, finally feeling that my life was back on track, feeling fitter than I'd felt in ages and hormones balanced (good!)</span></li>
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<span style="font-family: Arial, Helvetica, sans-serif;">So there you have it, the most memorable moments laid out. I've blogged about all of them at some point - but now? Well to be honest I still think of myself as one of the lucky ones, I take two hormone replacements and am fit and healthy. I don't have any complications from taking the hormones that I take, and I haven't got any other long term conditions right now and long may that continue.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I do still have my moments of annoyance with my condition and rebellion but I suppose that is only natural.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So the summary of all that is:</span><br />
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<li><span style="font-family: Arial, Helvetica, sans-serif;">A lot of 'stuff' happened</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">It was a long time ago now, water under the bridge</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">The NHS totally rocks!</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">I've come a long way and I've good health and fitness</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">It could be a whole lot worse!</span></li>
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<span style="font-family: Arial, Helvetica, sans-serif;">Cheers, Carl</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-79058322933939629442015-04-17T14:51:00.000+01:002015-04-17T14:52:21.743+01:00April 2015 - So, I can see my medical records now<span style="font-family: Arial, Helvetica, sans-serif;">I've been ruminating on a blog about this topic for a few weeks. Suddenly a few weeks ago, I noticed something online, someone had given me access to lots of my own data, someone who I hadn't expected to, my GP surgery.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It was only when the subject came up on Twitter that I realised why, because the government had given a commitment that all GP surgeries must provide online access to patients medical records, with an original deadline of the end of March 2015....although this seems to have slipped somewhat. I was unaware of this move and I'm sure many citizens are also unaware that this move was afoot. My local GP surgery uses a system called EMIS and I already use it to order repeat medications and book doctors appointments. I went online to order some meds, and noticed this new entry "view your medical records". I clicked into it and was amazed to see the level of data on display, see screenshot below:</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9WIDEsWtTrP0zUpNhyJg2jLv42jgQ7AU7Ucu6h4ihq5M8T7IXhxnJWb93nAW85a9vo-olF2LixMmcVw3p_H4PtnjxEdW5CzUfbfzgkIVQLUXWTc9ebKDj3RfhbyJug7ye3D8oWI9qXAg/s1600/Screenshot_2015-04-01-16-26-56.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9WIDEsWtTrP0zUpNhyJg2jLv42jgQ7AU7Ucu6h4ihq5M8T7IXhxnJWb93nAW85a9vo-olF2LixMmcVw3p_H4PtnjxEdW5CzUfbfzgkIVQLUXWTc9ebKDj3RfhbyJug7ye3D8oWI9qXAg/s1600/Screenshot_2015-04-01-16-26-56.png" height="400" width="225" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;">As you can see I get access to pretty much everything there is to know about me. The most interesting reading was the 'recent documents', as this contained loads of referral letters back and forth between my doctors and various consultants during 2013/2014 when my Pituitary issue was being resolved. All the correspondence between my GP and Endocrinologist I had already seen because he kindly copies me in on everything, but the same cannot be said for all, and there was plenty I had not seen before.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So what then, I can see all this data, what am I going to do with it? On the one hand it feels right that I should have access to this information, it is MINE after all. But had I not had all my health issues in the last couple of years would I really be that bothered, probably not. Some of the data available is beyond me anyway, I can view blood test results from a full blood count taken a while back, the level of detail is staggering and I never even heard of some of the data contained within that report - Haematocrit, Neutrophil, Lymphocyte.....never heard of them. So yes, the data is there, but unless I have clinical training I can't really do anything with it. Sure I can compare one against the other and see a trend, but that's about it. Also some of the results do have a graphical indicator showing a normal range and if you fall outside that range the word 'abnormal' appears, but again, do I panic when I see that, or in fact is my 'abnormal' totally normal. So I can see that GP surgeries may in fact be a bit worried that providing all this extra information may result in a flood of phone calls from patients asking what their new found data means. The reality is that you still need an 'expert' to help you understand how the numbers are relevant to you and in fact even if the number is "right" or "wrong", this may not be reflected in your well-being. If you are feeling well as a result of some treatment, the hard numbers may only tell part of the story to how a clinician may prescribe further treatment.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">An example is my recent Testosterone blood test. I had a blood test and injection in January and then another one this month, the first at a 12 week gap between injections and the most recent at 10 weeks, because after the 12 week my blood test showed my Testosterone was quite low in the 'normal' range, so we tried a 10 week period. The overall graph shows I am still on the 'low normal' range, but the pure numbers show that the levels of Testosterone in the blood are raised to what they were, so in a purely analytical sense, the 10 week versus 12 week scenario has shown an improvement. But what I will still need help with is interpreting what this means from a clinical point of view. Does this difference have any significant impact on my long term health, where in that 'normal' range should I be, or in fact does it even matter. I am fairly sure that when I am low on Testosterone I get more muscle cramps, and I believe that I have had less of them in this 10 week period, than previously. Otherwise, I'm not sure I'd notice any well-being difference between the two doses.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I like being informed when I speak to doctors, that can only be a good thing for me, but I wonder how much it complicates the patient/doctor conversation? I wonder what doctors really think of anyone like me that could in theory walk into my next appoint with lots of print-out's and questions?! Do they prefer well informed patients, or uninformed patients.....</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The 'recent consultations' area of the website does contain dates of when you saw a doctor, but no detail about what or any sight of notes that the doctor may have written. This is very useful as a reminder as to when you saw a doctor for a certain issue, I like it. I'm not bothered that very little detail is shown, it is probably for the best I think.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The other point that occurs is that it feels pretty weird is the speed of which information is available. How many times have you been told by your GP surgery to ring back in a week when your blood test results will be back. In fact the blood is sent to the lab on the same day and is processed very quickly in most cases, overnight I believe. I had my recent blood test at 11am, and I could view part of my blood test result at 9am the follow day online! This is a real bonus. As it happens the Testosterone part of the test did take nearly a week to appear online, but still. It also feels a bit big-headed to be able to see this information and potentially be able to share it with your consultant before they've even realised it is there. I feel empowered, but also hesitant.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As for the other info that is available, lots of useful stuff. I can check when I had my last flu jab or tetanus jab, check what allergies are registered against me and potentially spot any errors and correct them before any issues arise. This is definitely a good thing.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So overall then, a very good initiative. Slightly odd that it was turned on by my GP surgery without any fanfare or notice, just slipped under the door quietly - if I didn't go into my online access very often I'd never have known it was there. Equally no advice on how to interpret or use this information. Finally the ever present "is it safe having all this data online" question. Well that doesn't really bother me, yes of course someone could hack into the information or guess my log-in and password....but really, is it important to someone to know my blood test results or that I had a pituitary tumour removed in 2013.....not really. If someone wants to snoop around my patient records, good luck to them! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: red;">17/04/2015</span> - Just a quick edit, I found an article online that shows which bits of the patient record can be chosen to be displayed, clearly someone ticked all my boxes, but a surgery could choose to display a lot less:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.emisnug.org.uk/article/patient-online-guide-emis-web-users-part-2-enabling-patient-access-medical-record-viewer">http://www.emisnug.org.uk/article/patient-online-guide-emis-web-users-part-2-enabling-patient-access-medical-record-viewer</a></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">From a pituitary point of view, I can discuss all this with my consultant when I next see him in July. And if you're reading this now Dr Kar, I probably won't walk with lots of print-outs of my blood test results.....but may be armed with a few more questions than I otherwise might have had :-)</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0tag:blogger.com,1999:blog-2318466164146106470.post-16559797365011324282015-04-14T15:10:00.002+01:002015-04-14T19:09:11.142+01:00April 2015 - Electroretinography<span style="font-family: Arial, Helvetica, sans-serif;">So today, off I went to Southampton General Hospital, Orthoptics department for a specialist eye test.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The very first thing to note, is don't entirely trust what Dr Google tells you! Inevitably when you have a procedure coming up it is human nature to want to know what to expect. Years ago this meant trying to track down someone else who has had the procedure, but nowadays just fire up your computer and all the information is at your fingertips. But as it happens I had viewed Electroretinography video's and information for the American market, and things aren't done quite the same over here in the UK.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In America the electrodes placed on your eye are contained in a kind of contact lens and an eye speculum. In order to do this the surface of your eye is anaesthetised. But over here, all that happens is a very thin wire is placed on the eye and fastened at either side, you hardly even know it is there, it just feels slightly itchy/scratchy and I forgot about it after a while.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So what happens is that you have a couple of wires stuck onto the back of your head and onto the forehead. The lights are turned off and you then look at a TV with various flashing chequerboard images shown, but you have to look at a red dot in the middle of the screen. Alternate versions are shown and initially to both eyes then a patch over each eye. Then the electrodes are placed on the eyes and the tests repeated. Then at the end, a bright strobing light is shone into each eye, first a white light, then a blue light, then a very bright white light. I wasn't asked if I was an epileptic! All in all it is a straight forward set of tests.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">What I do find odd, is having had the test in its UK form, being very non-invasive, why the Americans do things differently....different technology but the same outcome? I would assume so, is one approach better than the other?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">All this data is fed through the receivers stuck to my head into a computer which interprets what my eyes have seen. I assume there is an expected level of information being received through the optic nerve and I will be measured against that, as well as each eye being measured against the other. I didn't see the computer screen the clinician was working on, but my wife tells me the wavy lines were pretty unintelligible to her. So once the data has been unscrambled a report will go to my eye consultant, who I am seeing next month. Let's wait and see what that tells me.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Overall the tests were easy to sit through and barely uncomfortable. The flashing images were a bit mesmerising and sent the eyes a bit wobbly after a while, but no lasting effect. Another test to add to the few I've had over the last couple of years.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">A techie side note, I noticed the TV used was an old cathode ray tube (CRT) version, very old looking technology. This at the moment is necessary apparently because the response times of old CRT telly's is very quick, and it is necessary to sync up the response times of the brain & optic nerve with the image being displayed. Using modern flat screen LCD/LED monitors isn't currently possible because their response times aren't quick enough right now. The scientist who did my test said she doesn't know what they'll do when their screens break as they are really hard to get hold of now, because no-one makes them any more! So if you have any old telly's lying around in the garage, don't take them down the tip, donate them to your local NHS Electroretinography unit (only joking!)</span>Carl Hallhttp://www.blogger.com/profile/08157994724775656006noreply@blogger.com0