Should my son have his thyroid removed ?

[emmamarymills]

He is 19. He has Graves. His goiter is quite large - noticeable and growing. His eyes are starting to bulge and the consultant agreed he has mild eye disease. I am so torn as to whether we should go ahead. He has been hyperthyroid for 4 years with the goiter getting worse each year. He has tried block and replace which did not work he is currently in 40mg carbimazole - for the last 3 months. He did have to have 60 mg for a week a week again to try and bring his levels down. We are trying GF diet but I am wondering - as is he- if it’s too late and we should just get rid of the thyroid in an attempt to stop the eye disease. I am aware that the eye disease can Continue after removal of thyroid. I have had some great device so far from this forum. Thanks

[Hennerton]

Has your doctor mentioned another medication called PTU? It has a long unpronounceable name but is an alternative anti thyroid treatment that may work better on your son. I also had Graves and found carbimazole did not work well for me. My levels of T4 were very erratic and I swung wildly from feeling ill/ unwell for ten months. Then I gave in and had a thyroidectomy. In all that time my doctor had not suggested PTU. I first read about here but have more knowledge now.

I also had mild thyroid eye disease but I do not recall them starting to bulge.

Now I am taking Liothyronine and Levothyroxine. Your son will doubtless be offered only Levothyroxine and if you go ahead with thyroidectomy I suggest you get a firm agreement that he will be given both. There are studies you can look up confirming that it is impossible for someone with no thyroid to make enough T3 to keep them well, as their missing thyroid made a proportion of their daily needs. It will be a battle as this medication has leapt in price in the last few years due to poor NHS buying practices and it is currently denied to many patients and not recommended for new patients. I am still being prescribed it by my GP but fear it will soon be denied.

If I were you I would ask to try PTU first. I know of someone who has been on it for many years and actually managed to have three babies in this time, so, it is relatively safe, I believe. It may work, it may not but you will never know unless you try. Hope thIs helps.

[emmamarymills in reply to Hennerton]

Dear Hennerton

Thank you so much for this information. It is invaluable for me at this time. We are meeting with the consultant on Monday so I will be able to go armed and primed.

Take care and thanks again for taking the time to share information

[Hennerton in reply to emmamarymills]

That is good timing. Please let us know how you get on. I think you will need to stand your ground and one other point is that Graves’ patients’ bodies are said to have become accustomed to high levels of hormone and do not respond well to mean little doses of Levo and Lio that are doled out according to the TSH blood test. But you can cross that bridge when it arises... ask here for great info from so many helpful members.

[Valarian]

Has your endo actually suggested that RAI will halt the Thyroid Eye Disease, because usually it’s discouraged for those with active TED, as it can exacerbate the symptoms. btf-thyroid.org/information....

[emmamarymills in reply to Valarian]

Hi Valarian

Thanks for this. No they haven’t suggested RAI rather surgery

Thanks for the link

[Valarian in reply to emmamarymills]

That could be because of the TED (but it doesn’t always stop them making the suggestion !)

[humanbean]

For more info that doctors will accept on PTU :

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drug/propyl...