Post Cushing’s Surgery – month 11

This month has been a very mixed month for me. I’m still improving but some issues with work have set me back and also given me some much needed education on how to cope now I’m adrenal insufficient.

I’m still finding it impossible to wake up and stay awake on a morning. I can get up around 11.30 most days but sometimes have to sleep past noon which can only happen on the weekend as I’m currently working 13.00 – 17.00 Mon to Fri. Following my call with my endocrinologist last month, I received the letter with a summary of what we’d discussed. Weirdly on here it mentioned a high fT3 level, something I’ve never been told before. In fact I checked on my portal for my previous results and it appears to be in range, albeit at the top of the range. So this will have to be something I discuss when I go in for bloods at the end of this month as I’m having a full panel done.

I explained all this to HR as they’re still constantly asking (understandably) when I’ll be back to full time. I have told them about the blood tests saying I hope that will give me some idea of something that can be done to get me up and about and back to full time quicker. However I’ve been informed that despite feeling it necessary to give me 8 weeks to build up an extra 5 hours, they now expect me to decide at the end of this month whether I’m keeping my full time contract, and therefore start working it overnight, or if I’m going to put in a flexible working request for less hours.

Of course this came on the day the UK was officially announced to be in recession again thanks to Covid so I’m starting to feel stress. The hours I’m on cover bills and I’m still able to put some away but it’s still not great timing to realise you might have to drop your hours and therefore your earnings for a while and potentially never increase them again.

Due to the stress along with the heat waves I’ve had a few off days. I had one day where I felt light headed and what I can only describe as ‘weird’ so I took some extra hydrocortisone. I took my blood pressure an hour later when that should’ve kicked in and all 3 readings were low so I had a very easy evening and continued that the next day when I still had 2 low and 1 normal reading.

I’ve had a few nights where if I get up to go to the loo I’ll feel a bit light headed and spaced out for a few seconds on getting up. I went so far as to actually black out one night. Thankfully my boyfriend had just come to bed and was stood by the door. I vaguely remember him asking if I was ok then the next thing I remember was him gently sitting me down on the bed and I was clinging to his arm for dear life. I’m pretty sure this was caused by the stress of work asking me to make a decision soon and I’ve been stressing about it even when I haven’t realised I am.

I got to the stage that I was asking for advice about the work situation as I feel it’s unfair to be given a phased return to half my hours then no further phased return to attempt to get the full hours. Unfortunately it seems they’re not doing anything wrong legally. In my desperation I’ve taken my hydrocortisone dosing into my own hands and, with the help of my fantastic support group admin, am trying circadian dosing. I’m still taking the same amount in 24 hours but instead of having 15mg at 8.00 and 5mg and 14.00 I’m now having 2.5mg at 3.00, 11.00, 15.00 and 23.00 and 10mg at 7am. The way it was explained to me was that I’m running on empty for at least 13 hours dosing the normal way, so my big dose on a morning is simply filling up the debt instead of giving me the boost I need. By maintaining a smaller but more stable level throughout the day it should be giving me more of a boost. I’m not sure if it’s really helping. I’ve had a couple of days in the last 2 weeks where I’ve felt more awake in the morning but for the majority of them I’ve still been sleeping in. Another good friend from the group suggested my growth hormone might be low and sent me the questionnaire that is used to see if you might have a deficiency. From what I can see if you tick between 11 to 14 of them, you probably do. I can easily tick 18 so I’ll ask for this to be tested as well.

I came close to my first adrenal crisis this week. I can only assume it was thanks to the background stress of work as I don’t recall the day being any different to usual. I was fine until I went to bed. As I came out of the bathroom I had intense pain in my lower abdomen and back (including private areas!) and started shivering uncontrollably even though it was 19 degrees. I also felt panicky. I took an extra 10mg of hydrocortisone and my boyfriend came to look after me. Around an hour after taking the extra steroids I felt a little better and got to sleep. The following day I still had a little pain and was exhausted so I took the afternoon off work, had a very easy day and took another extra 10mg of hydrocortisone. The third day I was back at work and took the extra 10mg again. I’ve been ok since.

Definition around my neck and my chins are now down to one!

Aside from the rubbish with work though I’m doing well! When I first started tracking my weight I was around 140lbs and I view this as the start of my Cushing’s symptoms so my natural healthy weight was probably between 135lbs and 140lbs. As such, 140lbs is my goal and as of today I only have 1lb to lose! If I can manage that by my 1 year anniversary, and I’m pretty sure I can, I’ll be very happy. I’ve also just noticed today that there’s even more definition to my collarbones. I’m still not back to what I’d expect there but it’s more than just a hint now. My memory is still quite rubbish though.

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