Long overdue Cushing’s update

Wow well I knew I’d been meaning to blog for a while and kept forgetting but this takes the biscuit! So here we are, a long overdue follow up to what has happened since my initial endocrinologist visit.

As mentioned in the last post I have definitely declined as far as my symptoms go. They’re pretty much all worse and to top it off I have had permanent numbness in my left little and ring fingers since 16th October. The only way to describe it is like when you’ve sat on your foot too long and it’s gone to sleep. That moment when you first stand up and can sort of feel that it’s touching the floor but if you put weight on it you’re going to fall over and any minute now it’ll start getting feeling back and be uncomfortable and painful. This has led to me having some issues with gripping and I’ve even had to resort to Niall cutting my food up for me once. Luckily it fluctuates so most days I can function fairly normally.

My visit to the eye hospital proved quite useful. I was there for 3 hours and luckily my doctor was aware of Cushing’s so when I mentioned I was going through diagnosis for that she said “Oh well let’s waste some NHS money and get some imaging done.” This was a good thing as the images came back to say I have asymmetry in my optic nerves which would indicate a pituitary tumour; the most likely cause of Cushing’s. So I made a note of that ready to bring up with my follow up appointment at the endocrinologist.

I managed to get in on 26th November for my follow up which was actually a very useful appointment. I saw the head of the department this time who first of all was very concerned over my high blood pressure and finally put me on some medication for it; my GP has been hesitant to as she didn’t want to interfere with testing. I have to say though so far the meds are doing no good and if anything my pressure is getting higher! But I am on a 2 month trial so we will see how it goes and have a follow up at the end of January for that.

Now on to the ‘good’ news. This doctor said (without saying in so many words) that it is Cushing’s and next step is to get an MRI done. I know it’s what I was expecting but I did have a little cry when he said it as obviously whilst a diagnosis is better than nothing I’d really rather not have this disease at all! I have had to chase up on the MRI though as he had said he’d order it within 3-4 days; over a week later I had heard nothing. My GP being as wonderful as she is chased it for me and I also chased it. My ‘urgent’ MRI is on Christmas Eve so a month after the appointment. Still it is a bit of an early Christmas present for me; here’s hoping they can see the culprit.

The next steps from that are then await the results and if they see a tumour I’ll be referred to another hospital where they will discuss treatment options. This is almost always surgery on the pituitary gland; technically this sits just below the brain but it is counted as brain surgery. It’s then a long road to recovery; if surgery is successful you usually have to go on replacement steroids as the pituitary gland doesn’t know what it is doing for a while and has to ‘wake up’. Until then you have to not only supplement to a normal range but to your old high level and slowly wean down to a normal level. It has been said it is worse than going through withdrawal for heroin so I’m not looking forward to that but it will be worth it to get better. I’m just hoping my Factor V Leiden doesn’t mess up the treatment options as I was told I can’t have hormone replacement with this but that is a discussion to have with my medical team if/when a tumour is found.

So there we go. Probably no new updates regarding this for a while. I will try to get back to posting about nails, degus and other random things in the meantime. Please bear with me as the headaches and brain fog do mean sometimes I just don’t want to do anything or can’t think of the words but I enjoy my blogging and truly hope documenting all this can help even just 1 person.

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