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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.
