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Hyperthyroidism treatment problem

AbJamil profile image
12 Replies

Hello everyone hope u all are fine.w

I diagnosed hyperthyroidism.Then,20days ago,Doctor prescribed me the medicine "Carbimazole".Everything was going well. But today,allergic reaction started in my body with red spot and itching feeling.seeing this,doctor suggested me to do Radioiondine therapy.

I am just 20 years old. My family js much tensed hearing about the therapy. My question Isn't there any other medicines for me? To avoid both allergic reaction and Radio therapy?

Pls,help me. TIA

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AbJamil
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12 Replies
NIKEGIRL profile image
NIKEGIRL

Hi. I have Graves’ disease. Firstly have u had antibody testing for hyperthyroidism? TSI and TRAB are the antibodies for hyperthyroidism. Secondly. There is an alternative drug to carbimazole and it is call polythyuracil. PTU for short as I may not have spelt that correctly. It’s an older drug and drs don’t like to prescribe it as it comes with the higher chance of liver damage but so long as u get regular liver function testing and your body tolerates it u should be ok. I am on this drug and have been for 8 months. RAI is permanent and only U can decide what U want to do. If u r allergic to carbimazole then PTU is your next choice of AT drug. Usually if u can’t tolerate carbimazole then PTU is ok. The drugs are totally different in their chemical make up

AbJamil profile image
AbJamil in reply to NIKEGIRL

Yeah I got your point.Thank you so much. I am afraid of Radio iodine therapy cause It's future complication isn’t good. Ok Let's see what my doctors suggest me. Pray for me.

AbJamil profile image
AbJamil in reply to AbJamil

Yeah,I had had Thyroid receptor antibody test. Where the level Should be <1.5 mine is 56.9..quite high..

NIKEGIRL profile image
NIKEGIRL in reply to AbJamil

Ok so one antibody test is positive. PTU is the alternative to carbimazole and like I said if u r allergic to one u usually can tolerate the other drug. U have a choice here and it’s not just being told to have RAI.

Gingernut44 profile image
Gingernut44

Is this your GP or an Endocrinologist suggesting RAI after only 20 days from diagnosis? As NIKEGIRL has said, there is an alternative to Carbimazole. Don’t be pushed into RAI until you have trialled PTU, hang on to your thyroid for as long as possible. Hypothyroidism isn’t as easy as they like to tell you, one little white pill a day doesn’t work for all. I speak from experience.

AbJamil profile image
AbJamil in reply to Gingernut44

Endocrinologist suggested me that if Carbimazole startes reactions,PTU will do so. So,RAI is the solution. We,all became sad.Now,I have switched to another more experienced doctor. Let's see what he suggests.

Gingernut44 profile image
Gingernut44 in reply to AbJamil

I hope your new Doctor will have more knowledge about your treatment. Please don’t be pushed into RAI before all options have been explored. Good luck.

PurpleNails profile image
PurpleNailsAdministrator

The alternative anti thyroid is called Propylthiouracil (PTU) & is chemical very different to carbimazole.

As high thyroid levels can be very dangerous if not controlled Doctors are often eager to recommend permanent treatments early on.

If medication does not stabilise your levels you will then need to consider either Radio active iodine treatment or surgery. Your doctor will always promote RAI over surgery as it’s easily administered treatment at an out patient appointment.

You can ultimately decide how to proceed. Doctors like to imply you don’t have a choice but that is not the case.

You may read about examples of those who regret RAI but to give a balanced view there are many who undergo treatments & do not experience unexpected complications. They are living their lives without the need to seek help from a forum & there isn’t the data to show by what majority completely recover & the percentage may have some struggles.

Poniesrfun profile image
Poniesrfun

As many have mentioned, there is a second medication you can try. If I had to make a choice (presuming medication doesn't do the job) between RAI and surgery, I would choose surgery. I base this on:

Having had my thyroid removed (for cancer) I can manage my meds pretty well in the US – though it is more of an issue I see in the UK.

Comments I've read from others who have had long term effects from RAI (not everybody has side effects). I happen to be an old bird but someone your age would have these side effects lasting for a longer time.

Research I've read about possible side effects

The lack of research into means of mitigating possible side effects

Patti in AZ

hopcott profile image
hopcott

Hi I have had problems with my thyroid since 1999 I didn't want radioactive iodine so I have been on carbimazole all that time I did have half my thyroid removed 8years ago as there was a lump but thankfully it was just a nodule didn't take tablets for 2 years but then went overactive again so back on the carbimazole anyway I have been ok but if you are allergic hopefully the other tablets will be ok for you I wish you the best of luck

PurpleNails profile image
PurpleNailsAdministrator in reply to hopcott

Is your hyper solely due to nodules or is there any autoimmune element? Have you have antibodies tested?

I have large solitary nodule, with no autoimmune. Ive been on carbimazole over 2 years, like you I’m not keen on RAI.

My TSH will not rise, even though FT4 & FT3 in range and endo says it’s not expected to, they said it would rise after RAI?

I do know my TSH was suppressed & FT3 over range in 2014, wasn’t told or followed up, eventually diagnosed end of 2018.

Although not super high levels, I worry the elevated levels will have cause osteoporosis later on.

Did you have high FT4 & FT3 over a long length of time?

hopcott profile image
hopcott in reply to PurpleNails

I'm not sure about the Ft4 and Ft4 but I have got Osteoporosis had it about 10 years I also had a heart attack 4 years ago which hyperthyroid can apparently cause as your heart can race but I have never had high blood pressure always felt pretty fit until I had a fall off a ladder 2 years ago and had a T12 fracture of the spine The hospital did say I have got multi nodules but still battling on and 76 nowStill taking 10mg of carbimazole a day

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