hyperthyroidism

[Emerald1953]

hello,

I’m reaching out to anyone for advice/opinion please.

I was diagnosed with overactive thyroid last year, I’ve been on 2.1/2 mg Carbimazole since June 2024, the thyroid nurse at the hospital explained that I could stay on the medication only for 18months at the most, as this will compromise my immune system, I have been absolutely fine whilst on them, not even had a cold, the nurse did explain that I could have Radioactive iodine treatment, can anyone let me know if you have had this treatment and how are you now.

I have an appointment to have this treatment next month, I must admit I am quite wary of having it.

Thanks.

[Fruitandnutcase]

Well, I was treated for Graves disease back in 2012/13. From about my second endocrinology visit I was offered radioactive iodine should I relapse and every time I said no thanks.

I even had one young female consultant hold an imaginary pill between her thumb and finger to illustrate what a small pill it was! I said no thanks once again.

My hospital treated by block and replace I took 40mcg of carbimazole a day until my test results were where the doctors wanted them and then levothyroxine was added into the mix starting with 50 mcg Levo and working up over the year to something over 200mcg always with someone mentioning should I relapse etc then it was RAI for me.

I was told my hospital treated ‘the quick way’ my block and replace treatment took exactly a year which didn’t seem quick to me.

Once I was discharged I worried about should I relapse and saw my GP. I asked if I could be forced to take radioactive iodine - No, I also asked if the hospital could refuse to treat me if I refused and the answer to that was also -No.

I armed myself with as much evidence as I could about people who had been taking carbimazole for extended periods of time. Hopefully you will hear from peple on here who are still taking carbimazole.

I got on very well when I was taking carbimazole, I wouldn’t ever say it affected my immune system either. I made sure all my vitamins and minerals were well up in their ranges, ate really healthy food, no junk food or fizzy drinks etc, and I get lots of exercise

I didn’t want my thyroid wiped out because I didn’t feel confident that I could rely on my GP to treat me adequate.y with levothyroxine to keep me feeling well. Look on here to see some of the problems some (although not all) poor people have. That was not a chance I was prepared to take.

My own belief is that hospitals want to bet rid of their hyper patients so the give them radioactive iodine or possibly a total thyroidectomy, then discharge them and send them on their way to their GP who may or may not be able to treat them in a way that will keep them feeling well.

Just don’t be pushed into making any decisions until you have researched things really thoroughly and feel comfortable with your decision.

It would be worth looking on (and joining )TUK thyroiduk.org for further information. Hopefully members will come along with more information. It’s one of those things - some people are very happy and have no regrets about taking RAI, others wish with all their hearts that they hadn’t had it but by then it’s too late, also bear in mind that if people are happy with their decisions they are probably not likely to be coming onto this site.

[Emerald1953 in reply to Fruitandnutcase]

Thank you for your reply.

I came on here when first diagnosed, and I noticed more negative than positive on having RAI, I mentioned this to thyroid nurse, she more or less said well you would, people tell more about negative things than positive, so yes, I get your last comment. I have lots of information now, and made my decision not to have the RAI, only concern now is, will the hospital (I’ve only ever seen a thyroid nurse) continue to prescribe my Carbimazole medication when I tell them?

[PurpleNails Administrator]

Carbimazole can cause a side effect of low white cell count. This is a very rare side affect. The risk of it occurring remains the same from when you start taking it. It’s doesn’t increase & does not compromise immune system. The nurse has mis-phased it.

Many take it long term, I’ve taken continuously for over 5 years.

The 18 months of treatment aim is based on Graves potentially moving into remission by that time frame . There no scientific limit. My “limit” coincided with Covid lockdown. The conversation changed from you really must consider…….. to it’s totally fine to remain on carbimazole for the foreseeable.

You have nodules which are not expected to remit but seems drs have applied same timeframe.

Monitoring hyper can be complicated & it’s considered more straightforward (& cost effective) to definitively treat the hyper condition & discharge you to primary care for GP to manage hypo & replacement.

If the monitoring & replacement is of a good standard the outcome can be good but there can also be issues.

You don't have to agree to RAI & you don’t have to explain yourself for refusing / delaying it. I “delayed” RAI so many times the specialist discharged me for GP for monitoring, which worked well for some time.

2.5mg or half a 5mg is super low dose, If you are currently well don't feel compelled to undergo a treatment you are wary of.

[Emerald1953 in reply to PurpleNails]

Thank you for your reply

I now have lots more information ‘ knowledge is power’and decided not to have RAI, just hoping thyroid nurse, ( I’ve only ever seen a thyroid nurse at the hospital) will continue to prescribe the medication when my 18months is up.