radioactive iodine or removal: I have been seen... - Thyroid UK

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radioactive iodine or removal

kathyrowley profile image
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I have been seen by the specialist today and diagnozed with graves disease. IM 44 and he doesnt want me to stay on meds long term. I was only started on the meds on the 23rd Sept he is recommending radioactive iodine or surgery but pushing more to radioactive and im not sure about this. Why cant i stay on the meds for the next 12 months and see what happens? he says its a 50 50 chance that it will return and he doesnt like to keep patients at my age on meds if i was 17 then yes.

I go back in jan/feb and need to decide any suggestions out there?

Kathy

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hblower profile image
hblower

Check and research saliva glands dysfunction, I did because I already have this problem and have seen articles on radioidine that states this problem with some cases on 1131. I turned it down and am on watchful waiting on multi nodular goitres.

best wishes Helen

Gastronomix profile image
Gastronomix

I'm also overactive, well at least the thyroid is..

I'm also about the same age. I've been on first Carbimazole - bad reaction including muscle cramps- and then propylthiouracil for about 3 years now. Having moved around a bit I have seen specialists in three different health authority areas, all of whom have been happy for me to continue with the meds. I appreciate that our situations are slightly different but a bit surprised that your specialist has been quite so insistant. I know that it is considered inadvisable to keep patients on medication (I believe there has been some link between this and kidney disfunction) for long periods but 12 months doesnt seem unreasonable.

Surgery has always been discussed only as a 3rd place option.

I can only speak from my limited experience, but I'd be asking specifically why he/she isnt considering a longer course of treatment and possibly trying to get another opinion. I'm told that hyper is much more regulated and controllable for females than males.

Despite my reluctance to make myself drug dependant for the rest of my life, I'm now leaning towards the radiation treatment as although I have attempted to reduce the meds the side effects (for me) are less than desirable.

Muffy profile image
Muffy

My friend was in her mid fifties and took medication for 2 years!

Hi Kathy i was diagnosed overactive 3 years ago and treated with carbimazole for 18 months but in May this year the overactive thyroid returned and i was straight back on the carbimazole. I'm 43 and was also told that i couldn't stay on the carbimazole long term and radioactive treatment was suggested. I wasn't too enthusiastic about this so went to see another consultant who recommended having the thyroid removed. After alot of deliberation i opted to have surgery which i had 2 weeks ago, the upshot being that i now have to take thyroxine for the rest of my life but my mum has been living without her thyroid and taking thyroxine for the past 30 years! My view was that whilst radioactive treatment is a well established treatment there's no guarantee it will work and the chances are you'll become underactive anyway but at the end of the day you have to do what you feel is right for you.

Best wishes

Rachel

kathyrowley profile image
kathyrowley

How did your op go what does it involve?

kathyrowley profile image
kathyrowley

I'm not sure whether to try the tabs for the next12 months or have a removal not going to go done radio iodine route thanks for answering

kathyrowley profile image
kathyrowley

That may be but my liver functions don't

Look too good and carbimazole can make this worse I'm afraid so not sure what to do !

Absolutely right not to go the RAI route, read what Dr Peatfield has to say about it in his book. Problem with the op, is it only removes the hyperthyroid symptoms by sending you hypo, the graves remains, it doesn't go away.. what's wrong with doing block and replace for a while? Have you considered using iodine? Maybe join the iodine group on Yahoo?

Nel.

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