Thyroidectomy

[Busyy]

Hi all

Me again!! I’m deflated to say the least!! I’m almost 18mths on treatment on carbimazole 15mg now for the last 10 months weaned down from higher dose- as my bloods are now within range I still require 15mg to keep me in range - met my endo today who says my 18mths are almost up and a decision must be made for a long term plan as I am still suffering with thyroid eye disease secondary to graves. Radioactive iodine is not suitable for me so iv been told to think about completely removing my thyroid , I’m not keen on this but my endo says I cannot be on 15mg of my drug for life! Can anyone tell me there experience with this surgery ? Thank you in advance x

[PurpleNails Administrator]

Have you asked your endocrinologist why you can’t be on 15mg carbimazole “for life” what exactly is the level of risk?

Firstly it’s not necessarily for life. It might be that you need a further 6 months. You may be able to reduce soon. Has Trab or TSI been tested to measure any improvement? or is doctor just going by 18month limit?

In my opinion doctors view monitoring hyperthyroid patients by specialists expensive & view hypothyroidism as easily treatable by GP. It is more efficient for hospitals to limit medication to 18 months but medically the risk of staying on antithyroid medication remains the same as when you started. It doesn’t accumulate with use. Carbimazole induced drop in white cells & liver issues is under 1%.

My specialist didn’t want me “on her books” so discharged me back to GP for monitoring and only once I agree to undergo RAI I can be re referred. (I have hyper nodule)

If you are unwell on Carbimazole and ready for thyroidectomy many do very well and never had the need to visit forum for help.

If you feel well remain on carbimazole don’t be pressured into either irreversible treatment until you decide it’s best for you.

[pennyannie]

Hello again :

The most current research is suggesting that the longer you stay on the AT medication the more chance there is of finding " remission " :

Graves can wax and wane throughout one's life and there is no time limit on when the AT drug should be stopped and if you are well and getting along ok where you are with what you are taking - play for time.

Hospitals work to O/P waiting list targets and the name of the game is to push more people through the system as quickly and as cheaply as possible - Graves Disease doesn't respond well to the stress and anxiety, nor to an imposed time limit for treatment.

There are many people on this forum who are on AT medication for life, and if i had my time over again, I would stay on the AT drugs and stand my corner - though I fully appreciate this can be very hard to do when unwell and relying on the very person telling you information you don't want to take.

The most current research however is suggesting that long term AT medication the better outcome for the patient and at the end of the day the is what you want, and the hospital guidelines may not be in your best interests.

Maybe print this off, and share it with your medical professional team - it may just help you :

pubmed.ncbi.nlm.nih.gov/338...

[Cavapoochonowner]

hello there, I also have graves disease and active thyroid eye disease.I was diagnosed in 2018 and have tried carbimazole only and am now on block and replace(40mg carbimazole and 100mcg levothyroxine mon- fri and 50mcg sat, sun) I have not been pressured by anyone at all to come off my treatment but have decided for myself to go for a thyroidectomy.I have not been feeling great lately and as I said my eyes have flared up again.I have my pre- op next friday.All I can advise is to find out as much information as you can and take your time coming to a decision then you can feel confident that you have made the right decision for you.I feel I have given everything a good go and have tried for remission once and relapsed badly within 2 weeks and am afraid to try again.Wishing you all the best.

[janh669]

Hi, Been there, got the t-shirt. Graves, TED. Carb didn't agree with me at all and my eyes were really bad, so, I had a full thyroidectomy. Then had decompression surgery and squint surgery to get my eyes back to normal. My thyroid surgeon told me that it was better to get rid of it as Graves will go into remission but will return. So I opted to get rid of it. I am fine now although I have to confess to struggling with Levo levels. If your eyes aren't too bad, I would get rid of your thyroid as soon as possible. If my Graves had been caught earlier, I wouldn't have had to have the eye ops. Having said that, we are all different. Good luck.