Yes, it is Cushing's Syndrome, not disease, caused by adrenal gland over producing. The op wasn't bad at all done by laparotomy and I was only in hospital for 3 days. The removal of the second one is easier, as after you have to go on steroids for life but they know the dose, whereas the first one I had to take replacement steroids until the other gland worked for two and it was difficult to judge when that happened. I was supposed to have regular cortisol checks, but the op was done in May and I have only had one and that was in July! I'm afraid that these days if it wasn't for these forums we would be in a mess, it's down to DIY health these days, of course the internet has loads of info. It took me about 5 years to get a diagnosis of Cushing's and 3 different endocrine specialist as they all tried to prove it wasn't that! I had the help of a renal specialist who was great and even though it wasn't his field he knew far more about it. I was sent to him 2 years ago for high blood pressure which Cushing's also causes and that' s going up again as well. I have my first follow up consultation with the endocrine specialist since the op in May on the 11th so I will certainly have a go at him and make sure I get action.
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Wow. Through the ringer.
I was tested for cushings once - turned out to be many tiny tumours in the pituitry gland instead - but the whole laborious diagnosis took over 2 years. during which time I had no treatment for it.
I totally understand that they need to be sure, and that the NHS is underfunded and understaffed, and there are waiting lists for things like MRIs, etc.
But really... you've got to wonder, the symptoms were pretty **** obvious!
Good luck on the 11th.
Yes, mine could have been the pituitary gland but I was tested for that whilst all this was going on, eventually. So little is known about things like Cushing's Syndrome as it's so rare about 1 in a million people get it. The first endocrine man I saw said "Statistics show it's so rare therefore you haven't got it! I immediately asked him if he did the lottery as they chances of winning were very low to which he didn't reply and I walked out and said I would get a second opinion. I paid to see a so called expert in Bristol, but she was not expert at all. It cost me over £1000 in consultations, tests and fuel to travel from Cornwall all a complete waste of money and go me nowhere.
I have done the urine test and the ever 6 hour tablet test and now got to go for the test of putting a pipe in my inner thigh and up to my head to find which side making to much cortisol
