Friday, 28 September 2018

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.

Thursday, 7 December 2017

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 :-)

Sunday, 30 July 2017

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 :-)

Wednesday, 14 June 2017

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.

Sunday, 5 February 2017

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..... :-)

Wednesday, 31 August 2016

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.......

Tuesday, 30 August 2016

August 2016 - Man vs Hedge year 4

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.

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.

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:


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.

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.

So maybe the last Man vs Hedge update? We'll see :-)

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.