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.