Still mad after all these years!

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.

7 Replies

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  • Am really saddened to read your post.  I do not have experience with Graves - only what I have read here on the forum.  It must be so difficult for you when you feel as if you are fighting a lone battle.  I cannot help with the people you are trying to trace either....  sorry.

    Just wondered if you had any recent blood test results with ranges.  I have read how low T3 can cause problems with the functioning of the brain.  There are more receptors for T3 in the brain than anywhere I have read.

    I am also wondering how your levels of B12 are - along with Ferritin - Folate and VitD.  B12 and VitD do have a role to play in our thyroid and mental health.

    I have read the book by Datis Kharrazian - Why Isn't My Brain Working - where I learned a great deal.  He also wrote a book about the Thyroid - Why Do I Still Have Thyroid Symptoms ?  He has a website and you can sign up for a Newsletter.

    There are many people on this forum who are feeling as you do so - so keep posting and asking questions and there will always be someone here to help with suggestions.

    I am not a medic - just a Hashimoto's girl  !

  • Hi Marz

    Thank you! I will look up Datis Kharrazian. 

    I am very careful to keep my B12  vitamin D3 and Iron normal. There was a time when I was deficient in all these, no one tells you this, you have to find out by yourself! I take biocare supplements as recommended by my GP back in 1991, Dr Sarah Myhill, little did I know then her reputation and of course my symptoms began after we had moved and she had become a private practitioner. Because I was her patient back then I get all my supplements from Biocare at trade.

  • OK Gilly - normal they may be - but are they optimal ?  B12 needs to be around 1000 - and D3 around 50/60 ng/L.  I think they use the pmol/L measurement in the UK.  I am in Crete.

    Will look out for your thyroid results - it would be interesting to know how your levels are - especially the FT3.  Probably a good idea to post in a new post - to ensure people see them.

  • Oooh, suppose you have checked how your adrenals have come through all this.....  Sounds like perhaps the rage could be pure adrenalin?      I would be looking at getting a saliva test. ( about £75) from one of the labs to see how you are doing.

    A cheaper alternative is temperature monitoring.... Have a look at my earlier post.. healthunlocked.com/thyroidu...

    I hope this gives you a starting point.... 

    Xx.  g

  • I have heard of the saliva test but I cannot really afford it. I will look into the temperature monitoring, thanks.

    One thing I do know, I am aways cold.

  • Gilly, 

    I'm sorry for your sad story and the predicament you are now in. I will give you some links. 

    The fact is when we need hormones in balance other medications might not do the trick of recovering. 

    This is from a Canadian website. Excerpt:

    The physician must also be careful to check the thyroid in cases where psychiatric medications must be taken over a long period. Lithium, the drug commonly used to stabilize the moods and increase the efficiency of manic-depressives, can cause hypothyroidism, particularly in middle-aged women who are the most susceptible to this trouble; the hypothyroidism in its turn can produce depression, the very problem that the treatment was intended to relieve".

    and

    The physician must also be careful to check the thyroid in cases where psychiatric medications must be taken over a long period. Lithium, the drug commonly used to stabilize the moods and increase the efficiency of manic-depressives, can cause hypothyroidism, particularly in middle-aged women who are the most susceptible to this trouble; the hypothyroidism in its turn can produce depression, the very problem that the treatment was intended to relieve".

    thyroid.ca/e10f.php

    I doubt that any GP would know much about 'other' problems which can arise either due to misdiagnosis or underdosed. Also too much hormones in our bodies due to hyper must be awful plus the symptoms it causes.

    If I were you I think I'd now concentrate on your hypo as your thyroid gland isn't a problem anymore due to your TT but it is important that you have the right dose and the right thyroid hormone."

    I note you were? taking 125mcg of levothyroxine but are now taking 3 grains of NDT (equal to around 300mcg of levo). I'm not sure if you are taking levo/NDT. I am assuming you are sourcing your own NDT - how long have you been taking it and have you had a recent blood test.

    If our thyroid experts cannot make many patients well by taking notice of the TSH alone and not the continual suffering of their patients who haven't a mental health issue by either adding T3 or prescribing NDT, patients who have developed mental health issues due to their non-diagnosis or ineffecient hormone replacements we have to, as you are doing, trying to mend yourself.

    Some on this forum have been successful and I am hopeful on a correct dose of NDT (of which there are a few) you will gradually begin to feel much better. It has taken us years to be diagnosed and many have been diagnosed with other problems (myself included) due to the inability to recognise the most common of symptoms of which there are over 300. So it stands to reason our bodies will take some time to repair.

  • HI Shaws, 

    Thank you for you advice and very helpful comments. My concern, is there  permanent damage to my frontal lobes? I heard the wife of James Cracknell speaking on Woman' Hour some time ago (the ex Olympic rower) he has frontal lobe damage after a bike accident in South America. All his symptoms echoed mine and I remembered the medical research Dr Cawood had sent me years ago, he certainly thought I could have frontal lobe issues. If only I could find the research he sent me! There was no cure but they could at last get the extra help they needed and knew why they were as they were. 

    I am taking NDT alone not with the Levo. My dentist noticed last time I visited that after years of a very dry mouth, since being on NDT my mouth is now very moist, a complete turn around and far more healthy. No more having to chew horrible gum all the time. So that was a very unexpected plus. There is no difference to my mental state though on NDT.

    I have seen loads of research saying how some people do not recover their old personalities but this research from New York was the only one with some explanation for this. The anger especially is due to frontal lobes and why we hear of 'Graves' Rage'. Of course much of this resolves on treatment, but for some it never does.

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