Thyroid UK

Positive replies please for life after thyroidectomy after having graves

Hi

I would love to hear from anyone with a positive story after having graves which resulted I in a total thyroidectomy.

I was diagnosed last September after being unwell for a while but self diagnosing the menopause !

My results from my blood test had come back off the scale so high they couldn't get a correct reading.

I went to see an endeo and was put on 40mg carbimazole daily and beta blockers.

Although it bought it down and the symptoms went it never came down below the top end of range.

In June it was decided after the carbimazole affecting my liver I should have RAI or thyroidectomy.

I decided to go for RAI and came off my medication the week before as instructed. After 3 days I noticed I was trembling again and my heart pounding they did a blood test and it had gone up slightly they said they would do another blood test before the RAI which was then in a couple of days time.

I had the blood test on the day of my RAI and it had gone off the scale again and couldn't get a reading.

They said the RAI was too dangerous as my thyroid is so aggressive and it needs to come out once it settles down again.

My levels are coming down which is good I feel a lot better again and I'm just waiting my op date.

If you have some positive words for me please reply : ) x

5 Replies
oldestnewest

Hi Lizzieb69

May I ask, what they meant by your thyroid being so aggressive?

Pete

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Hi Pete

They said it is aggressive as after almost a year on carbimazole it has gone straight back to where it was when I was first diagnosed after 7 days off the tablets.

Thanks

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Good luck with the op. The trick seems to be getting hormones at in the correct level after the op and keeping them there.

Pete

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I think there will not be many people using this forum who feel very positive about thyroidectomy. They are unlikely to be here if they have had no problems.

I had a thyroidectomy in 2006, following a stormy year of Carbimazole and took my endocrinologist's advice. He did not tell me there is another drug I could have tried. I may have done better on it.

Most important would be to get confirmation that you will be offered Liothyronine as well as Levothyroxine after the op. I think you will only be prescribed Levothyroxine but thyroidectomy patients usually do better long term with both. Also get frequent blood tests to check how you are doing and post results here for advice. Most endocrinologists have no idea what levels of hormones are optimal when one has no thyroid and you may find you are under medicated, unless you take charge of your own health.

This forum will give you all the advice you need when the time comes. Good luck!

2 likes
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Have they tried you on PTU? I'm usually quite against destroying the thyroid without trying everything. That said, if you really just want it out now my aunt (not on here probably cos she's happy with her treatment) got a total thyroid op after circa 20 years of a very aggressive thyroid and two Rai that didn't work. She is now happy out on her replacement hormone and keeps telling me i should do it. I won't as I personally think it would be wrong for my situation. I think one similarity between you and her is that your bodies seem to be very sensitive to the thyroid hormone which may bode well for your response to replacement hormone. I'm only guessing of course and I know nothing about levo or liothyronine or ndt or any of the things that many on here know a lot about. I guess the evidence on here is it can go very badly for many. However if you're determined and just need some hope well there's one example

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