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.
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..... :-(
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.
Posts
