Anyone else has continuing mental problems years after treatment for Graves' and TED?

I was treated for Graves disease, TED and Graves dermopathy in 2000 here in Shropshire 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' and TED 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 this doctor's 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 is now in New Zealand.

I do know of only one other person like me, he is a Vicar who wrote an article for TED magazine, some years ago called " The Madness Within" he too was having continuing mental distress and was asking "what has 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 Vandapump, 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.

15 Replies

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  • Sorry, I'm in remission from Graves but I have gone back to what I was before. 

    Unfortunately I haven't heard anything about people who stick in Graves mode either. Hopefully someone reading your post will have and can help you. 

    Would it be worth trying something like CBT to help with your thyroid rages. It might not get rid of the urge to be angry but it could perhaps help you to recognise where you are heading and control them.

  • Hi Gilly81

    I know exactly what you are going through. I was diagnosed with graves in 2011 but convinced I had it many years before. My levels have been up and down since then.

    When my levels are in the normal range (whatever that is!!!!) I still don't feel myself.

    Consultants are just not interested in how you feel just your levels.

    Some days are more of a struggle than others. I have resigned myself to the fact that it

    can leave you with mental problems, but nobody wants to know.

    I have researched long and hard and there is an article that says Graves can change your personality long term. If I find the article will send you the link.

    I think it depends on misdiagnosis and how long it took them to come to a Graves 

    Diagnosis, In Victorian times people with Graves where put in sanitariums.

    My heart goes out to you.

    Love and hugs xx

  • Thank you Ali56 for the good wishes, sorry it has taken me so long to reply, it is a struggle day to day for those of us who just do not return to normal as expected, especially for our family and friends. Love and hugs xxx

  • I'm very sorry about your long history ill-health. I am hypothyroid but you have got no joy from Mr Vanderpump! It is o.k. for surgeons to whip out your thyroid gland and then sort of 'dump' the patient who is then passed on and on and on and getting no solution to problems caused by insufficient thyroid hormones.

    I am not medically qualified and don't know the 'ins and outs' of many thyroid gland dysfunctions but I am sure if the doctors provided some decent dose of hormones, either Natural Dessicated Thyroid Hormones on a compassionate basis and or the addition of liothyronine (T3) the patient might fare better.

    T3 (liothyronine) for instance is the Active Hormone required by the billions of receptor cells in our bodies. The brain contains the most. Without T3 we cannot function at all. T4 (levothyroxine) is the inactive hormone and should convert to sufficient T3 but not if the dose is not at optimum. It's not good enough for the doctor to pronounce 'normal' with regards to blood tests as we don't want 'normal range' we want very low or below normal, i.e. 1 or below for TSH. We need T4/T3 to be towards the upper level.

    Get a new blood test - ask for a Full Thyroid Function Test - which should include T4/T3/Free T4/Free T3 - ask to for Vit B12, Vit D, iron, ferritin and folate and get a print-out with the ranges for your own records.

    The blood test should be the very earliest possible and don't eat before it. You can drink water. Take levo afterwards. Also leave about 24 hours between your last dose of levo and the test and take afterwards as it will skew tests.

  • I am sure I do not convert T4 to T3 and I felt better since being on NDT for the past seven months or so. Even my dry mouth, that has caused me problems for years on Levo has gone, my dentist mentioned the vast improvement last time I saw him. Non of this has changed my mental problems though and reading the literature this seems to be a  permanent problem for a minority of TED Graves' sufferers after treatment. 

  • I hope it's not permanent. It's amazing how much havoc a dysfunctioning thyroid gland can cause.

  • I think it is something to do with some autoimmune diseases, multiple sclerosis too is known to have a strong psychiatrical component. 

    Part of an email to me from an Endo in the US who use to research this aspect of Graves' and TED:

    Part of his email to me:

    "Sorry to hear about all that you have been through… In our research, we found evidence that some individuals with Graves’ had changes in brain function (including frontal lobes and other structures)… We hypothesized that in Graves’, there were two possible effects on the brain: effects of hyperthyroidism and effects of the autoimmune disorder. Just as the autoimmune disorder attacks the thyroid, eyes, and skin, it may also attack the brain. In addition, these conditions are independent of the thyroid disease, suggesting that stabilizing the thyroid function does not necessarily improve these other conditions."

    Only received this the other day, far more help than I ever received from Vanderpump or any other Endo here in the UK. I also had the Graves' skin disease which is another aspect of it all.

    Not the doctor I had all the information about originally, this one is from Brown's University. I have info from the Graves' foundation in the US too about the Neurological affects of Graves' and how sometimes they are permanent and the European Endo journals, only the UK seems to do no research into this aspect of the disease. The more I look the more I find.

  • It is important for us to know what's going on in our disease. I do know that brain needs the most T3, so I hope you have enough circulating in your body so it gets into all of the receptor cells. 

  • Hello Gilly,

    I fully understand you. I only have Graves, no TED. But I was hyper for 3 years before self-diagnosing myself and requesting a blood test. My main symptoms were strong anxieties and restlessness - no palpitations.

    I'm not the person I used to be, I'm still way more anxious than I used to be. And I relapsed after 2 years. I started a CBT a while ago and it was a disaster as I had to keep a log of my anxieties and then explain them to the therapist. It was like living the same anxiety 3 times instead of one.

    I turned to hypnotherapy recently - a mixture of hypnotherapy and therapy - and it works well.

    Take care.

  • Hi Nathalie

    I have just realised I have posted the same post again here! I just make these kind of mistakes all the time, so I will have to try to delete one of them. I am having counselling, but really I need someone who understands how Graves' and TED affect our mind. Most people, including modern Psychiatrists (the old ones new about it because in the old days Graves' patients ended up at their door) I have seen have no understanding of Graves' at all. 

    I too suffer anxiety and it can leave you exhausted! I use to be known for being so laid back, I was never anxious before Graves'. My best medicine is a walking group, we all have mental health problems and we support each other. It was begun by a phycologist but is no longer run by the NHS…cuts! But we keep it going ourselves. One day a week I can get out of the house, walk and be with people who actually understand. 

    Take care

  • I do a lot of sport too, 5 times a week but it was my regime before Graves. My hypnotherapist seems to understand the disease well. But I'm not forgetful as you are and I still work.

    Take care

  • Acupuncture and a bundle of Chinese dissolving herbs rebooted a better adjusted me. Took a few sessions but I feel a heap of improvement . 

  • So I'm 2 years into graves with no ted. I'm also a biologist so am trying to figure this darn desease out. It's definitely chemically driven as how you feel is directly related to the chemicals / hormones circulating in the blood. I totally understand what you are all describing re anxiety. It's like being anxious but without any real reason or stress behind it. For me it feels sometimes like an extra hit of adrenalin. Suspect the adrenal glands may pick up the slack sometimes. It's the oddest feeling and really tiring.  I feel like I'm a hypercondriact  sometimes, trying to work out why i feel like I do, looking for the cause. Got my blood results yesterday and after 5 months my remission has finally failed.  Pretty shit given that it's my 41 st b day this weekend. So I tell myself ride the waves of this desease, take it day by day and try to keep my chin up. I know I'll have bad days ahead but will try to enjoy the good ones when they come. Xxxx

  • Hi Gilly81

    I too have Graves and Ted I had a TT in 2013, and eye lid surgery 2014. I think my meds are okay now, and I feel okay but I know I will never be the same as before. A few years before my diagnosis looking back I was a mess my moods very erratic, I could only put it down to my periods. I didn't know there was a link until later, but I was kicking off and loosing it with some of the people I work with. I feel so ashamed of my behaviour, I can't tell you (but you know) I did develop depression and it's been hard coming back from that, but I'm mostly back.... I want you to know that the way you feel won't last forever I noticed if I was under medicated I would feel very low. So you need to get that sorted. I take lot's of supplements lot's of advice about that here, but exercise as really helped I try and do something every eve after work. Yoga is fab, that Mindfulness App Headspace is good it's free. I wish you all the best, this community is a brilliant resource and to know others here have been through it all helps ..... take care xx

  • Just wanted to thank everyone for the positive responses. I think I have just about tried everything out there to get better. I have been advised to see a Neurosphyciatrist. I had a lovely email from a endo specialist in the US who has looked into the mental aspects of Graves' and TED. It seems there are tests that will tell how my brain is affected and maybe even drugs that would help. It is early days, I am seeing my GP next week and will ask for the referral. 

    I had never even heard of neurosphyciatrists!!

    Part of his email to me:

    "Sorry to hear about all that you have been through… In our research, we found evidence that some individuals with Graves’ had changes in brain function (including frontal lobes and other structures)… We hypothesized that in Graves’, there were two possible effects on the brain: effects of hyperthyroidism and effects of the autoimmune disorder. Just as the autoimmune disorder attacks the thyroid, eyes, and skin, it may also attack the brain. In addition, these conditions are independent of the thyroid disease, suggesting that stabilizing the thyroid function does not necessarily improve these other conditions."

     

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