Hyperthyroid

Hello...I havent posted or looked in for a while. Although i myself have been hypo for a couple of years I feel ok with it....but I have a question to ask anyone out there who might be hyperthroid. My daughter has been hyper since she was 13, and is now, at 22, on block and replace; quite a high dosage as well. (35 carb/50 levo) I managed it all the time that she was a minor and managed to stop them zapping her thyroid. Shes now as an adult managing it herself; and i have to say just really doing as shes told. I have spoken to her a little about all that i know...I did lots of research when she was young....enough to make her question the 'choices' she has been given. Basically either have it removed, or radioactive treatment. I dont like the idea of either, and know many who have similar views. im wondering where to go for advice or help; an independant voice would help. I thought of Dr Peatfield but think he specialises in hypo? Id love to find there is a solution for her. Shes reluctant to come onto any forum; she says she doesnt want to start worrrying about it all; I said Id do it for her as i really dont want her to go down the path of least resistance, which would be doing what her endo thinks is 'best'......

Any advice, anyone????

5 Replies

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  • OK

    Maybe this will help her

    My husband developed Graves age 27........... 45 yrs ago and was on and off Carbimazole for around 10 years

    then came thyroid storm and he was advised to have surgery as RAI was considered far too dangerous in anyone under 40 .

    Back then we did not have benefit of the internet and only info was a gruesome book by Prof Bayliss

    Well he had the surgery was genuinely weak as a kitten for 6 weeks .......still not sure how he managed to return to work and he slowly declined over 6 yrs to a point where his job was on the line but his blood tests were considered "normal "

    He was referred to every speciality under the sun and every time I asked "is he now hypothyroid " answer was NO

    Eventually when ME /CFS was mentioned he got a referral to then top NHS ME doctor Betty Dowsett ( now sadly dead ) who after 3 hours of checking him exploded and said this is thyroid and to a top teaching Prof who found out he also had Hashiomotos running in tandem and that if they had not operated the Hashis would have cancelled out the Graves

    The upshot is he cant tolerate either levo or T3 only NDT and he bitterly regrets the lack of proper testing and info that was done

    The Tayside Report that was published many years ago found that majrity of those treated with RAI were hypo in 5 years and pretty much same after Thyroidectomy were hypo in 10 yrs

    I also know that if I had known back then what I know now about inherited desease I would never have had children

    because I have one daughter with Hashis and severe Endo plus same in her 2 daughters

    other daughters little girl has coeliac and Hashis

    my husbands nephew has hashis and all because his mother had severe Endo

    So my good genes have not weakened the genetic risk

  • Thanks - anyone got anything more positive?

  • Morena, If you use the HU search facility to search RAI, radioactive iodine and hyperthyroidism you'll find lots of posts on the pros and cons of RAI and staying on Carbimazole.

  • Thanks clutter; at her age staying on carbimazole isn't an option if she wants children...I'll have a look. I guess I'm looking for a miracle for her really!

  • Very tricky situation. If you read my profile you will see a little about me. There was no internet when I was given the choice of surgery or RAI. The Endo persuaded me to have RAI because I wanted to have a second baby and he said it would be more conclusive than the surgery which was guesswork. I think if I had my time again and it was in the present time I would continue with the carbimozole and meantime seek out alternative opinions. Obviously if your daughter wants to have a child soon then the situation would become more urgent. It would be hard to know where to start and also depends on her financial circumstances and where she lives. In London there is a wealth of choice. I remember many years ago a friend who is a very good acupuncturist told me her thyroid was overactive and she refused to have anything done. She followed an alternative path and it righted itself (possibly herbal remedies/homoeopathy, but I'm not sure). My brother swears by ayurvedic medicine, maybe your daughter could look into that, just a suggestion.

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