Your thoughts please

[Platypus8]

I was diagnosed with bilateral toxic nodules causing hyperthyroidism in Sept 22. I responded well to treatment and now take 5mg Carbimazole every other day. My endo is now pushing for definitive treatment. RAI is not an option for me and stopping meds clearly won’t work. Removing an otherwise healthy thyroid doesn’t make sense and I am told long term Carbimazole is not safe. Does anyone know if there are any other solutions out there? Just to say, I do not have Graves. Thanks for any advice, links or information.

[pennyannie]

Hello Platypus:

You might like to copy the following two research papers for your endo to read :

though I doubt the hospital policy will change :

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

ncbi.nlm.nih.gov/pubmed/306...

[humanbean]

Are you from the UK?

If yes, be aware that doctors (GP or hospital) cannot remove your carbimazole prescription from you, even if you reject both RAI and thyroidectomy. They are obliged to continue treatment, although it is possible they might pass responsibility back to your GP if the GP will agree to take on that responsibility.

[Platypus8 in reply to humanbean]

thanks for that. Do you know of any research into the safety of taking it longer term?

[Fruitandnutcase in reply to Platypus8]

Don’t know about research but I found this on an NHS site - you will have to scroll and scroll to reach the bit about safety in the long term.

nhs.uk/medicines/carbimazol....

There are people out there who have been taking it for years - you just have to find them! I was always being told if I relapsed I would be given RAI - I always said I didn’t want it because I felt very well when I was taking it then I saw my GP to ask if they could force me to have RAI or refuse to treat me if I didn’t comply and the answer to both was no. Fortunately I haven’t relapsed,I had Graves but I imag8ne long term carbimazole is the same for whatever reason you are taking it.

[PurpleNails Administrator]

I opted to remain on long term carbimazole. You are on a very low dose .

Doctors imply you can’t take carbimazole long term but there’s no scientific reason for this. The risk of side affects remain the same as when you begin on the medication. They don’t increase.

The cost of monitoring hyper is expensive, it’s considered more straightforward to definitively treat so primary care can manage replacement for hypothyroidism. So “easier” medically, but not always uncomplicated for us.

Simply say you’re not ready now - drs do not need to know you intend to delay indefinitely. If stable they may suggest you be discharged to GP for monitoring. Try to resist this. I agreed as I was hopeful GP would not push treatment & I wanted to view results online - which appear on GP record but not hospital record.

The GP is clueless & I’m required to chase up monitoring. They often argue it’s not due but they don’t argue with me for long. I need to be quite adamant about what gets tested. On one occasion only TSH was tested, the GP noted that previously advised TSH will be undetectable, FT4 & FT3 must be tested. So they made note that TSH expected to be low no further action. Without testing FT4 & FT3. I pointed out how poor this was & even got an apology but every time I find myself having to explain and insist on the right test are included & notes added.

Last time they agree straight away but then specified TSH only. When the receptionist called to say form was ready. I said, yes I saw on system, it’s wrong. They sorted it out but it’s a mini battle every time.

[Fruitandnutcase in reply to PurpleNails]

You know I’m sure they could cut the cost. When I had graves I used to have to go along to the hospital a week after they had seen my blood test results. I honestly couldn’t see why they bothered, a look at the blood test results and if they really wanted to a phone call to ask how you were would have been fine for me because I always felt that by the time I saw an endo (a whole year and I never saw the same one) a team decision had been made about my treatment.so I was pretty much irrelevant.

I never felt that anything I said would have made a difference to what was planned for me. So I’m convinced they could cut costs that way and if patients really felt they needed to speak to someone they could either make an appointment or phone in. On the other hand my treatment was smooth and I kept very well on carbimazole.

On the other hand maybe they had us along for their trainee endos to practice on 🤣

[PurpleNails Administrator in reply to Fruitandnutcase]

I always had telephone appointments with a endo nurse specialist. She was far more knowledgeable than all the specialists put together. I never saw same endo more than once.

I convinced GP I knew how to adjust doses because the endo nurse taught me how to monitor result ect.