Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
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 was finally sent to a psychiatrist and he diagnosed the Graves' instantly just looking at my eyes and my 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.
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, 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 do know of only one other person like me in the UK, he is a Vicar who wrote an article for 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 experts in the UK, he said to see a psychiatrist, no longer a thyroid problem, yet 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.
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.
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, 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 do know of only one other person like me in the UK, he is a Vicar who wrote an article for 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 experts in the UK, he said to see a psychiatrist, no longer a thyroid problem, yet 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.
In short, my thought is that you may have a little of both - mental issues AND after effects of Graves.
When I got diagnosed with Graves, a month before that I saw a psychiatrist who told me I am bipolar and need to be on Lithium and Depakote. Then, of course, the real cause was found and things got better.
With that said though, I do think I have some anxiety and I got diagnosed with PTSD, which probably was a part of what caused Graves to begin with - an accident.
So, you may not have depression, but if you know you have some erratic behaviour and mood swings, something is definitely
Off and it just so happens that getting graves brought your attention to already existing problem exacerbated by the illness.
Antidepressants do not work for me, they actually make me worse.
I found that what I need is plenty of rest, positive imagery, counseling and sedatives before bed. All of my medical issues have been ruled out at this time, so I just do counseling and take herbs/prescription for anxiety.
Most importantly, try to be easy on yourself.
I am sorry you're not feeling well. One question, is only the TSH being checked? The thyroid levels of the Free T3 and the Free T4 are important as well. If the Free Ts are not tested, these can very well throw out the symptoms if not in the 'right' places within the lab reference ranges to feel best there at.
This is the website I moderate at which you can read up the symptoms for both hypO and hypER: http://www.livingwithgravesdisease.com/symptoms
Elaine Moore has some good articles as well as a forum at her website. She is post RAI of about 28 years now.
elaine-moore.com
{{{hugs}}}
I too have been told I was bipolar since I have not returned to how I once was. I thought Graves' was supposed to mimic bipolar not leave you that way. Besides I do know two people who are bipolar and other than the mood swings we are nothing alike. They tried to put me onto Depakote too.
Those who had been diagnosed late were more at risk.
I have left a detailed info at the other website.
The Free T3 and the Free T4 needs to be tested. The TSH cannot be used to dose the meds to how one is doing because of having positive thyroid antibodies which skews the readings.
{{{hugs}}}