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Tomas' Story

I went in to hospital for testing 3 ½ years ago now when I was 20. This was after years of all my doctors saying things like “I would grow out of it” or “it is just stress from University etc”. I was overweight for the amount of exercise I did and I also ate well. I had a really fat face and would flush a lot.

I would get hot all the time, and so sweat whatever I did. I couldn’t wear jumpers even when really cold (for everyone else) and it was horrible.I also would wake at 5-6am every morning and just couldn’t sleep properly. I would be tired all day, depressed and generally fed up!

I had things like my thyroid tested but after 6 months still nothing. I had then finished University so moved home. During this move my notes were lost so when I got back to my home I had to start all over again.

After another 5 months it was found my testosterone was low so I was given some gel to replace it. 5 months after that I went back to my GP, this time complaining that I had very bruised legs. He put me in for cortisol testing which was high. I was then diagnosed with Cushing’s disease so at last I actually felt relieved it wasn’t me just imagining all these symptoms and there was something actually wrong with me. I was a rare case as I was told that Cushing’s was a rare disease especially amongst someone my age and then also for a male!

5 months later I had a petrosal sinus test which concluded that the problem was with my pituitary gland. About 4 months after this I finally got an operation to try and remove what they thought was a lump on my pituitary gland! This they removed successfully and I was home about 4 days later. This was now January, 2 years after I had initially gone in for tests.

Nothing was improving; I was taking hydrocortisone now but was feeling worse and worse. I “weaned” myself off and eventually took nothing, feeling better without it. It hadn’t worked and then I found out that the tissue they removed turned out to be healthy tissue!

The next year was horrible; months would pass with nothing happening. Letters would be lost that were sent between doctors/surgeons and when I rang up following up things it was a hopeless cause. During the summer I was going to be sent to Sheffield for Radiotherapy, so I had scans done then sent. These were lost so had to be sent again. After more hassling later and being prepared to fly out to Sweden (I’m half Swedish anyway) and having it done privately I was eventually told I couldn’t have it done anyway as they couldn’t see anything on the pituitary.

I was then refereed to a surgeon who would be removing my adrenal glands (this letter was at first lost).

Summer was over now and I was feeling terrible. My parent ended up writing letters of complaint to several doctors/surgeons/GP and also my local MP. At this point I had probably been ill for 6-8 years and I had really had enough!

Anyway I was “rushed” through and eventually I had my adrenal glands removed in December with Christmas of work to recover from that.

6 months on now in May 2007 I have lost 2 stone (about 14kg), I can sleep and I feel a million times better, I can’t really say I’m back to how I was as I don’t ever remember feeling normal!

I don’t know if my drugs are right yet (I’m on hydrocortisone and fludrocortisone) as at the moment I feel really bloated all the time. I’ve tried contacting my endocrinologist but no luck at the moment!

I was also told last time I saw a endocrinologist that my pituitary had grown (I was producing more ACTH) so I would have to wait for an MRI scan to see how much. They suspect it could be Nelson’s syndrome. Still waiting now for a date for that!

If anyone wants to contact me for any reason, feel free (). If it’s advice you want then I seemed to have gone through quite a bit!

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