Hyperthyroidism toxic multi nodular goitre - the next step

[CSK1]

Saw my endo 3 weeks ago and after 6 months of 40mg carbimazole a day my T4 is down to 10 from 39.8, and TSH risen to 0.08 all positive except hair loss which is being monitored and the endo was very kind reassuring me it is normal and will improve. Now the carbimazole has been reduced, 3 weeks some of the old symptoms have returned though not too bad so remaining optimistic (a good sign as I was very pessimistic), my endo said he would see me in November and we would discuss the next step, just wondering if anyone else with hyperthyroidism caused by a toxic multi nodular goitre reading this has a long term view, I suspect that if my levels remain stable on 20mg of carb they will reduce or stop it? Long term has anyone any thoughts as to more permanent solutions if endo suggests surgery or radiation, I don’t have Graves and would like to avoid becoming hypo.

[Sheilla]

Hi CSK1. I understand your frustration. I have been on that journey. I have Graves disease. My experience with carbimazole is up and down for the past 3 years. Started off at 40mg combined with beta blockers. Was dropped to 20mg, then 10mg then to 5 but my numbers started rising again. My doc was hoping that I would go into remission but my symptoms came back on the lower dosage. Had to increase to 10mg again. Because we failed to find my optimum dosage my doc is suggesting surgery, which Iam resisting. I am much better but they need to keep adjusting the dosage every 3 months, which is why they are suggesting surgery. They want to start me on block and replace regime but havent decided. I dont know if this is of help to you at all because I still havent found the solution.

[CSK1 in reply to Sheilla]

Hi Sheila, thank you for replying, yes any experience is helpful, I am adjusting to the lower dose and have felt the anxiety creeping back, I don’t want to rush into surgery but despite searching the internet find it difficult to get the information to make informed choices, even my GP says it’s best to discuss results etc with endo, if the dosage is adjusted regularly do you feel like you are managing the thyroid or is taking carbimazole long term not a permanent solution? I was going to ask if I could try a different drug as an alternative to carbimazole if surgery is recommended, as I too would be resisting surgery.

[Sheilla in reply to CSK1]

When my dosage was reduced to 5mg for 3 months, i went hypo with hypo symptoms setting in, fatigue and weight gain. Not good at all. Dosage was increased to 10mg again. I was given the 3 options of surgery, radiation iodine (though my doctor said RAI might not be suitable for me) and block and replace therapy. But the doctor is all for surgery. I have not tried an alternative to carbimazole.

[ling in reply to Sheilla]

Hi Sheilla, was reading this thread and saw your reply.

How have u been doing since?

Also a question. If at 5mg you were hypo, should your carbimazole not be reduced?

Best regards.

[humanbean]

You might find this website has some useful information for you :

elaine-moore.com/

It doesn't just cover Graves'.

[Sheilla in reply to humanbean]

Thanks humanbean. Very useful information there.

[CSK1 in reply to humanbean]

Thank you for this useful article and apologies for the delay in replying, away at the moment on much needed holiday

[ling]

Hi CSK1.

How are u doing? I just came across your post.

If you are still looking for answers, or just want to exchange notes, may I suggest you contact a forum user here who goes by the moniker Greekchick

She too has toxic multinodular goiter and I daresay she's gone through the gamut with the condition, including a recent TT from which she's recovering.

Hi Greekchick, hope it's ok to recommend you here. I'm not sure CSK1 still needs an answer, just putting you in the loop in case she/he does.

I trust you are doing better.

Best wishes to both of you : )