Monday, 12 October 2020

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!


Sunday, 2 August 2020

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



Thursday, 15 August 2019

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.

Monday, 15 April 2019

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..... :-(


Tuesday, 5 March 2019

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.

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 :-)