I was treated for Graves’ disease, TED and Graves dermopathy in 2000 here in Shropshire, UK, after many years of misdiagnosis. I had all aspects of the disease, eyes and skin and an all over tremor for four years and other symptoms dating back a further four years at the very least, was finally sent to a psychiatrist and he diagnosed the Graves' instantly just looking at my eyes and my all over tremor, I had a resting heartbeat of 135. I was lucky, I could have ended up being sectioned and treated for psychosis!
Now it is 2016 and my personality never has returned to normal. My handwriting and signature changed which has caused all kinds of legal and banking problems, I cannot plan or organise anymore, even simple tasks are beyond me and I still get 'Graves' rage'. My family do not recognise the person I have become and my marriage was over even before I was diagnosed because of my crazy behaviour. I was told I would get back to the old me, that has not been the case. I am now hypothyroid and take Levo 125g. (actually I am now, for the past few months, taking NDT 3 grains).
My skin resolved itself just 3 years ago and my skin is now clear after more than 17 years of misery! Why am I so changed? Why have I not returned to anywhere near to the calm, collected, rational loving person who was a great organiser and who's profession had been a Production Planner? Now I cannot even plan a simple meal at home!
Doctors have given up on me long ago.
My eyes were operated on, my TSH returned to normal, their job is done and I am left floundering in misery, my old friends gave up on me long ago. I do not blame them for that, if I could escape from me if I would.
I was sent information from a researcher in Graves' disease who I contacted in despair some years ago, he had worked with one of the top Graves' people in the US and he told me about a doctor in New York who had done detailed research into Graves' patients who had not recovered mentally, the doctor in New York had discovered changes to their frontal lobes using imaging. I had his address and photographs of the various brains. I lost all this, as I loose everything! Does anyone know of this research at all? I had the doctor's research, imagine pictures, address and even telephone and email address, all lost. I have tried to find it on the internet to no avail. This was sent to be around 2004 by the researcher who I have also lost contact with. He was working out of a Hospital in Dublin. I believe he now lives in New Zealand.
I do know of only one other person like me, he is a Vicar who wrote an article for the UK TED magazine, some years ago called “The Anger Within" he too was having continuing mental distress and was asking "what had Graves' done to my brain" many years after his treatment. I still have his article.
I feel a freak when I try to explain all this to my GP or any doctor, they just offer anti depressants, which are no help at all, I want me back or an explanation why I am like this not more drugs! I wrote to Mr Vanderpump, one of the top Thyroid experts in the UK, he said to see a psychiatrist; it is no longer a thyroid problem. However if it is damage in the brain caused by Graves" who's problem is it? The doctor in New York was a Thyroid doctor and he was looking into brain changes. I just feel very alone and abandoned by doctors.