Radioactive Iodine Therapy : Hi all. I have... - Thyroid UK

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Radioactive Iodine Therapy

Thyroidplus
Thyroidplus

Hi all.

I have Graves which appeared after my kids were born but responded to Carbimazole /PTU.

Earlier this year it flared again (stress-related) and the ATDs aren't working (TSH <0.01 FT4 >100) & have caused my white blood cells to fall to dangerous levels. I've had to stop the Carbimazole & am waiting for iodine treatment in a few weeks.

I'm very nervous about it & worried how ill cope after as I have young kids.

Has anyone else been through it?

Thanks!

D x

13 Replies
oldestnewest

I had RAI after recurring flare ups of Graves about 23 years ago. After a few months I needed replacement thyroxine, which I have continued on without issue since. My mother had also had a the same story for treating her Graves.

Because of her experience, and the positivity of the Consultant, I didn’t question whether it was the only and right course of action; since reading up more it would seem that there are some potential long term kidney issues with RAI that I was unaware of then, and many people don’t get on with the replacement thyroxine as I do, luckily.

And on this site and others you will hear a very opposite experience to mine, and cautions not to do it. I’d recommend that you do your research, and hopefully others here will give you their thoughts as well.

Thyroidplus
Thyroidplus in reply to beech

Thanks so much

Graves_RAI
Graves_RAI in reply to beech

How did your RAI go? Any side effects?

beech
beech in reply to Graves_RAI

No, I have never had any negative side effects from the RAI in the short-term nor in the long-term as yet after all these years.

My replacement thyroxine - at present at 175mg Levothyroxine daily - which I am happy on (no tremor, firing on all cylinders!) but my GP feels is too high - personally suits me fine. I have had a bone density scan which is fine - High Thyroxine can contribute to osteoporosis, but I don’t seem to have had a problem so far.

Whether there will be long-term issues is unknown to me as yet.

My view is that a few tablets every day for life is a small price to pay for getting me back on track; life could have been very different without treatment.

bantam12
bantam12 in reply to beech

Great to hear a good review of RAI and Levo replacement working well, we don't hear enough positives on the forum.

I also had no negatives from RAI and I do very well on Levo 👍

beech
beech in reply to bantam12

I feel reading on the forum I have been lucky to tolerate replacement synthetic levothyroxine so well - but so did my Mum, and my sister who is not Graves, so obviously we have a familial problem - but have never reacted badly to treatment either. It is possible!

bantam12
bantam12 in reply to beech

Indeed it is possible, both my sisters take Levo, younger sis has been on it for over 40 years, there are 5 of us on Levo and all well.

Unfortunately not many positives on the forum so anyone new to it assumes it's not going to work.

beech
beech in reply to bantam12

I suspect also that people who don’t have problems don’t post often as there’s nothing to say!

Hi, my situation is very similar to yours! Had Graves after my kids and can no longer take ATM’s. My WBC went super low, as I already had a benign condition that gave me a low WBC to begin with. Hematologist says my immune system is compensating in other ways. Now I’ve been off of ATM (methamazole) for a year and the hyper thyroid is back.

I am in the USA we’re RAI is first and foremost recommend. For some reason the opposite is true in the UK. It took some time for me to get used to it but I am comfortable with having the RAI (next Weds). I do not know of kidney problems related to RAI. However I have found thru my research that many things happen just bc we have Graves and would or could have happened even without the radiation treatment. Graves is a condition on its own that we have even AFTER we become hypo.

I’m 49 but have had low WBC forever. Doing RAI next Weds. Good luck to you!

Maria

Thyroidplus
Thyroidplus in reply to mtb0202

My that does sound similar and my RAI is also scheduled for the 15th! My thyroid is fairly bad at the minute and have had to stop ATM because of low neutrophils so actually looking forward to it all being over! I'm very jittery and can't sleep.. dreading the 3 weeks no contact with kids tho...

Thyroidplus
Thyroidplus in reply to mtb0202

Hope all goes well for you today. I'm just about to leave..

Graves_RAI
Graves_RAI in reply to mtb0202

How did your RAI go? Any side effects?

Graves_RAI
Graves_RAI in reply to mtb0202

How did your RAI go? Any side effects?

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