The Sugar Odyssey

I've not updated this blog for a while! 

Back in around May 2024, I decided to control my sugar intake, not go on a diet exactly, just cut down sugar. I am no dietician or expert in this field, this is purely my experience, but i thought the story may help you.

I have always had a sweet tooth my whole life, but I’ve never been overweight, yes I’m one of those annoying people! I was diagnosed with hypopituitarism in 2013, had the pituitary macro-adenoma removed in 2013 and have been on hydrocortisone and testosterone ever since as my body no longer makes its own cortisol/testo.

So what led me to think about sugar intake? Energy crashes! 

On and off since I’ve started taking hydrocortisone have mid morning energy crashes, which I blamed on low cortisol and solved by taking an early hydrocortisone tablet dose. But this has always been quite random and annoying and if anything was getting worse.

I had been reading about sugar online, which is obviously not always the best place to look, because sugar is somewhat demonised by many. However, it had occurred to me that despite me not being overweight (I’m 5 foot 6” and 63kg/10 stone) I do take in a lot of sugar. I was drinking around 5 cups of tea/coffee each day, each with 2 good teaspoons of sugar in, I like orange squash…so another couple of glasses of that each day. My breakfast was typical of many people, crunchy nut cornflakes or honey nut hoops etc. (i.e. sugary). So I began my journey to a change of diet.

According to the NHS the recommended intake of sugar each day for an adult is 30 grams. A teaspoon is about 4 grams, therefore at 8 grams of sugar per cup of coffee (2 teaspoons-full) and 5 cups per day, I was exceeding my daily allowance on hot beverages alone! So since May I started to reduce my sugar, less than 2 teaspoonfuls, one and a half etc. I am down to about a third of a teaspoon now and mix that with a Stevia sweetener. If I have a coffee out, then I don’t need any sugar in that (who knew that shop coffees are so sweetened!). For me it took over 2 months for my drinks to stop tasting absolutely horrible. Even now, I still prefer the taste of sugar, but I suppose having sugar in tea & coffee is a pretty hard habit to break after 60 years!.

I swapped out my squash for plain water, obvious really. However, I have always hated the taste of water and somehow as time progressed, that has slowly tasted better as my sugar intake has lowered. I don’t understand that one. I do still drink squash but nowhere near as much. The squash is very low in real sugar, but it does have the sweetener Sucralose which means it still tastes VERY sweet.

I swapped out my breakfast for the very popular breakfast of ‘overnight oats’. Just plain porridge oats, but with various things added like almonds, walnuts sultanas, fruit, dates etc. Supposedly oats release energy more steadily throughout the day rather than sugar-spiking you like sugary breakfasts do.

But has this torture done me any good, I am over 3 months into the new regime. I do believe that it has, for me at least.

Reading online about the effects of taking in too much sugar and then having an energy crash, it very much mirrors what I was experiencing but blaming on lack of Cortisol. I have had FAR fewer mid morning energy crashes. I have had a couple of late afternoon low sugar events, which are quite different - I’m not diabetic. These low sugar events are quite different, shaking, sweating, brain fog…..but I’ve had my blood sugars checked and all is well (standard checks for my Pituitary monitoring). These are very rare (had about 3 in 3 or 4 months), and stop as soon as a scoff a couple of biscuits.

There, that’s it. That is my sugar journey so far. I’m hoping to continue with a lower sugar diet and that it continues to benefit me. I do fall off the wagon every now and then with sweet treats, but overall things are looking better.

Edit: I've just come back from a cruise ship holiday. If you've ever been on a cruise then you'll know a big part of cruising is, eating! I didn't hold back and although I didn't put any extra sugar in my hot drinks, my diet changed significantly. I enjoyed the food, but I had an effect when I returned home. A stonking headache for 3 or 4 days! I immediately went back on to my new low sugar diet without issue and I was also a bit lethargic for a few days. But slowly I'm returning to my new normal, still no energy crashes. I did notice for a couple of days water tasted a bit foul again, but that is back as it was now. It is all very interesting and probably there is still much to learn about our modern diet and what it does to us. This is very personal for me and I will continue to experiment with the sugar odyssey.

What does being a Patient Expert entail?

Good question!

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.

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.

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?

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.

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!

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.

Am I an expert patient?

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......

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.

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.

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. 

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:

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.

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. 

Hypoadrenalism. I have seen my condition described in this way, the amalgamation of the two words probably need no further explanation.

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....

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.

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.

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....

July 2021 - Man vs Hedge - the return!

 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).

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.

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!

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....)

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......

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.

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.

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. 

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.

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. 

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.

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!!

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. 

A couple of photos:

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!!

Part of the hedge, this has gradually been reduced in height, but have to be careful as this is our neighbours hedge!

Hedge on the left is privet, fence is 6ft high, hedge varies but is 12ft high in places!

April 2021 - One foot in front of the other

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!

This weekend has been 2 days that were very different. One good and one not so good.

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.

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.

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.

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.

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'.

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:

7:30am 15mg - 13:00 5mg - 6pm 5mg

But today:

8:00 am 15mg - 10:45 5mg - 4pm 5mg

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.

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.

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 DON'T 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.

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"!!

October 2020 - Something is going on!

Hello again, time for my 2nd post of 2020, not exactly prolific but I've got a little bit to report.

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.

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.

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:

Tiredness - definitely got this

Being sensitive to cold - got this too

Weight gain - quite the opposite of this!

Constipation - thankfully not!

Depression - nope!

Slow movements and thoughts - yes, although I can also attribute this to low Cortisol (or low Hydrocortisone in my case)

Muscle aches and weakness - definitely, although again, I could attribute this to much higher activity levels and moving house

Muscle cramps - yes definitely, particularly in my hands

Dry and scaly skin - yes, getting worse over the last couple of weeks

Brittle hair and nails - 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

Pain, numbness and a tingling sensation in the hand and fingers (carpal tunnel syndrome) - Nope

Later symptoms of an underactive thyroid include:

A low-pitched and hoarse voice - this can definitely be me at times!

A puffy-looking face - definitely not, I'm thinner in the face than I was.

Thinned or partly missing eyebrows - haven't really looked at this!

A slow heart rate - I've always had quite a slow heart rate of 50-60bpm, but I have a graph on this in a minute.

Hearing loss - if you ask my wife, she will tell you I never listen to her, is this the same thing?!

Anaemia - don't know.

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.

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!

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.

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):

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 HAS gone up and it has stayed up!

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:

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!!

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..... :-)

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.

I'll give you an update as soon as I have one!

August 2020

Wow, nearly a year since my last post. A lot has happened since then, most of it in the last few weeks.

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!

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.

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....

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......

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.

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.

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.

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.

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!

Photo is me and the dogs relaxing after mowing the lawn today

August 2019

Hello there.

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....

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.

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.

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.

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.

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??

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.

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!!

But anyway, there is my theory for what it is worth, I'll leave it with you!

One thing I can say for sure, is that I am very much enjoying my lack of crashes.

April 2019 - How's the new dosing going?

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.

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 40, 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)

(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)

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. 

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.....

"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.

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 "is this fatigue reasonable?" 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.

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.

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.

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.

A very sensible 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.

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.

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..... :-(

March 2019 - Generally ok, but more variable

I've not updated this blog for a few months, so I thought it was time I did.

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.

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.

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.

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.

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!

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.

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!!

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 YOU 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.

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.

September 2018 - a bit of an update

Well, it has been a while since I last updated this blog.

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.

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.

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.

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.

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.

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!

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.

December 2017 - an Endocrine checkup

Well, it has been a good while since my last pituitary update.

My previous Endocrinologist appointment was in late February 2017, so 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.

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.

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!!

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.

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.

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.

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!

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 :-)

July 2017 - the Cholesterol story

Well here's a story, my Cholesterol. 

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.

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.

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.

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. 

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 Total cholesterol:HDL ratio creeping up to 4.8. Stubbornly refusing to go the right way.

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.

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.

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!

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.

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.

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.

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.

So not exactly a pituitary blog as such, who knows, maybe it can shoulder the blame just a little :-)

June 2017 - listen to your body

Hello dear reader, if there's any of you left out there.....

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.

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.

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.....

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......

Timings......I've found that the timing of my "lunchtime" dose is critical 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. 

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.

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!!

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.

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!

Listen to your body of course applies to everyone.....stop and listen. You never know what you might hear.

February 2017 - I've still got AI!

Hi there

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.

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. 

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.

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.

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!

So in summary, I've still got AI, it is part of who I am now..... :-)

August 2016 - Pituitary update

Well what's this, an actual pituitary update in my pituitary blog, whatever next.

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.

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

http://www.evidence.nhs.uk/formulary/bnf/current/6-endocrine-system/63-corticosteroids/632-glucocorticoid-therapy/hydrocortisone

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.

Anyway, rant over, what about me. 

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).

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.

The future is bright.......