I’m approaching my 7 month anniversary so figured I’d better get on with writing this blog up! Sorry guys!
Week 4 was the week Mum went home. I still hurt everywhere, was sleeping lots and didn’t really have an appetite but it was all the same each day and as my parents live in a rural area of France, flights don’t go on all year round. So I made the most of her being around since she didn’t leave until Friday and had her stockpile lots of home cooked meals in the freezer.
I had a lovely start to week 5. 2 days after Mum had gone home I managed to wake up with the first sinus infection I’ve ever had. I’d felt it coming on the Saturday evening before, it felt like a spot under the skin pain-wise but there was no lump. The next morning it was much more painful and my left cheek had swollen up plus it was sore to the touch under my eyes as well as down the side of my nose. Great. Of course I instantly started worrying about infection going to my brain through the surgical site. I tried to ring my surgical ward but was getting no answer so 111 got called. I didn’t know how much those operators or the nurse/doctor triaging me would know about Cushing’s surgery so I tried to impress how important and dangerous this could be on them. It clearly worked as they got me an out of hours GP appointment at the local hospital that afternoon.
I was still really struggling with walking so even though the hospital is a 5 minute walk away I had a friend pick me up to drive me there. I didn’t know these out of hours GP appointments existed and the great thing is because it’s booked you don’t have to wait! There was an hour and a half queue in the walk in centre but I got in on time. The doctor listened carefully and whilst I don’t think he really understood about the surgery he prescribed me some antibiotics to take for a week and told me to go back to my GP if the symptoms hadn’t gone in a week. When I came out my friend insisted she buy me a wheelchair to help with days like these, medical appointments in general and because she’s already had one knee replaced but will need the other one doing at some point so she’ll take it off my hands. I agreed but it was quite an upsetting thing to hear. I’ve had surgery, I’m supposed to be getting better and now I’m actually worse off with my mobility.
Mum had of course been kept informed throughout all this and she was angry that the surgical ward hadn’t picked up. She tried calling them herself on the Monday to no avail and then called my endocrine nurse instead! So on Monday I got an email from my endocrine nurse to say she’d passed the details on to my ENT’s secretary and then got a call from the secretary to give me advice. Mum also decided she had to fly back out instantly so on Friday, a week after she’d left, she was back again.
Due to being on antibiotics I had to double my dose of hydrocortisone to prevent an adrenal crisis. My support group also showed me how in healthy people, when they get ill they also release more cortisol at around 4am so since I had to wake up to take my antibiotics anyway I did an extra dose of HC as well. Double dosing was great! All my withdrawal symptoms went away. Annoying enough you get so used to high cortisol with active Cushing’s that although there are definitely things that make you feel awful, you actually feel ok most of the time as the point of it is to mask any bad feelings such as pain for a short while for you to run away from whatever is threatening you! Of course with such huge amounts it does a lot of damage so that also means when you lower it, all your old aches and pains return, plus all the new ones caused by the damage from the cortisol and to add to all that, you get the aches and pains caused by withdrawal.
Week 6 was thankfully quite uneventful. The infection cleared up so I didn’t have to go for any more antibiotics but I had to slowly come down off the double dose. You can’t just straight away go back to what you were taking before infection if it’s been more than a day or two because your body gets used to it again so you have to taper slowly. I dropped 5mg every couple of days and thankfully the withdrawal symptoms came back but didn’t get any worse. I had my follow up MRI on the Friday at 7pm. What a time to do it. Another friend drove me in and Mum came with me too. It was the same lovely lady who had dealt with me in July and she vaguely remembered me so that was nice. This time I was able to go in the more powerful machine as well so I’m confident that will have shown anything that might have been there.
By now I was 13lbs down which could probably have been more if not for the double dosing but this is still just over 2lbs a week. I could see the difference in my face, much slimmer and not red and my collarbones, though still hiding, could possibly be felt under the fat out by the shoulders, but not by my neck, still tons of fat there! My heart rate, which had been very high since surgery, was slowly starting to come down and my blood pressure was definitely under control.
Week 7 was an exciting but scary week for me. On the Wednesday I had my first SST, or Short Synacthen Test. This is to see if you are producing your own cortisol or not after surgery and is used to guide the endocrinologist as to how much HC you should be taking. The scary part is you can’t take any HC for 24 hours before so I had to take my morning dose on the Tuesday then skip my noon and 5pm for the rest of the day. I also didn’t take any Wednesday morning but took it with me to take straight after the test. Both Mum and Niall were with me though and we took a taxi to minimise stress and physical effort.
I met a new nurse today called Steven who was lovely. He explained they’d be doing a full blood panel to check my hormones were all as should be as the pituitary controls pretty much all of those so having half of it out puts you at risk of mucking some up. I also had to do a urine sample to check kidney function then finally the SST.
The test itself is quite easy though yet again I had to complicate it. A baseline blood sample is taken, then you’re injected with synacthen which is a synthetic ACTH and 30 minutes later another blood sample is taken. ACTH signals your adrenals to make cortisol so after the injection the cortisol reading should go up. I of course had to feel faint after the injection. It seems I’m fine with things being removed from my body but try to put anything in and I become a total wuss! I did however challenge him by saying Miriam is the only nurse ever to do a blood draw without bruising me. No pressure. (Spoiler alert – he did both draws from the exact same spot and didn’t bruise me so he is now the champion!)
Miriam popped in as well so it was lovely to see her and it was good that Mum could meet her as I go on about how wonderful she is. She was just asking roughly how I’m doing and if I had any questions. I did ask about the tumour itself and there was no size given on the report so I will never know exactly how small ‘small’ is but it had been confirmed to be benign (phew!) and was definitely the cause of my Cushing’s as it had stained for ACTH. It was something called a corticotroph adenoma and apparently hadn’t ever shown up on the MRI so my surgeon had just gone in blind, confident that my results confirmed something was there and luckily found it. He’s just that good.
Whilst waiting on my results Miriam recommended I drop my HC by 5mg a day so instead of being on 15/5/5 at 8am, noon and 5pm I should take 15mg at 8am and 5mg at 2pm. All in all I was in there for about an hour and a half and yet again was exhausted after it.
Mum went home again this weekend and that was that, there were very few flights by now so it was pretty much done, no more getting ill for me!
Week 8 was a little bit of a mixed bag as I didn’t really see any improvement in my routine overall, still lots of sleeping until noon and aches all over. However nothing got worse so the new dose was agreeing with me. I had now lost 17lbs without trying so still averaging just over 2lbs loss a week.
Steven called me to say that I “didn’t quite pass” my SST so I will be retested in a couple of months but it was what they expected. The fact he phrased it like that and I’ve been ok on my lower dose makes me hopeful that it won’t be long until my pituitary gland wakes up. He did however mention that my potassium was low again so he pretty much prescribed me a banana a day then said he’d write to my GP to request they redo my bloods! I don’t tend to get symptoms with the low potassium so he did say it could be that my body has gotten used to it as the new norm and that it may be caused by one of the blood pressure meds that I’ve been on for nearly a year, as the three times it’s been low have all been within that year.