Thyroidectomy advice/stories?

[RhubarbAndCustard]

Hello,

So my Graves Disease has relapsed and I am now back on the beta blockers and 10mg of Carbimazole rather than go the block and replace regime I was on a few months ago.

I have discussed it with my Endo and I am going to have a thyroidectomy after I get married in Spring time next year before I start trying for a family.

Does anyone have any advice? I hope I am doing the right thing.

[Raventhorpe]

Hi Rubardand custard sorry to hear you have relapsed .please think very carefully before getting rid of you thyroid, I was on and off carbimazole for 12 yrs and was pretty well much of the time had Rai 7 yrs ago and became hypo it was the worst thing I ever did, I can honestly say I've not been right since ihaven't been able to go to work since as cannot deal with any stress and if I do too much one day I tend to crash the next even though my bloodtest results are near the top end of their ranges and my tsh is low I still don't feel right and all the NHS offer you is levo thyroxine which doesn't suit everyone. So do some research first and be very sure it's what you want to do not what the endocrinologist is pushing you to do as it makes their lives so much easier if you have the op or rai as once you are stable they put you back under the care of your gp.

[purple64 in reply to Raventhorpe]

That's very interesting Raventhorpe . I guess there is no reason why you can't stay on Carbimazole all the time rather than go for surgery or rai?

[Clutter]

RhubarbandCustard,

Is there any reason you don't want to continue taking Carbimazole or B&R.

[RhubarbAndCustard in reply to Clutter]

I felt like I had no choice between TT or RAI

[Clutter in reply to RhubarbAndCustard]

RhubarbAndCustard,

TT or RAI are the only options for destroying your thyroid. If you were comfortable on Carbimazole or B&R you can continue taking them for decades and don't have to destroy the thyroid. If you are planning a family then you can be switched to Propylthiouracil (PTU) while you are pregnant.

[Hennerton]

I have a friend who uses PPL, a different version of anti-thyroid medication. She is a doctor and did not want a thyroidectomy but also wanted to start having children. She has now had two perfectly healthy children and is expecting her third soon. Like the other posts, my advice is do not lose your thyroid. I had a TT in 2006 and have regretted it ever since. Hope this helps.

[RhubarbAndCustard in reply to Hennerton]

Oh really? Why did you regret it, the doctors honestly make you feel like you only have 2 choices of having a TT or RAI

[Hennerton in reply to RhubarbAndCustard]

I was made to feel exactly the same and Carbimazole did not suit me. I was seeing a private endocrinologist but at no time did he mention PPL or even block and replace. I was left to decide myself, felt very ill and went for TT. I have not had a normal day since then. My health has deteriorated in many subtle ways. I simply am not the same person. I do take T3 as well as T4 and am fortunate to still be getting this on the NHS via my GP. If you feel good on Carbimazole, do not hesitate to keep your thyroid. Good luck!

[Cat4health]

I always say hold out on carbimazole or PPT if you can - graves disease treatments are in the works. Right now apitope is in stage one clinical trials on a medicine that would cure graves disease and multiple other researchers are exploring options. If you destroy your thyroid theres no going back. Endocrinologists like to push TT or RAI but i consider that their laziness. You can jave multiple relapses and still take anti-thyroid.