Radioactive iodine alternatives?

[Milynda]

I am struggling with letting the Endo perform a radioactive iodine procedure to treat my Graves’ disease. The idea that my thyroid will be destroyed is unsettling. Has anyone had the procedure and has it helped. What is it like to have the procedure?

[SlowDragon Administrator]

Your previous post on similar topic

healthunlocked.com/thyroidu....

How well is your Graves’ disease managed at moment

Extremely important to regularly retest vitamin D, folate, ferritin and B12

What were most recent vitamin results

What vitamin supplements are you currently taking

Have you had coeliac blood test done

Have you tried strictly gluten free diet, can help Graves patients as well as Hashimoto’s patients

[Milynda in reply to SlowDragon]

It is managed well as I am taking Carbimazole. I have relapsed after a year on Carbimazole. I have had all the bloods mentioned in your comment.

[PurpleNails Administrator]

I haven’t had the procedure. Doctors did refer me for the treatment after my first specialist appointment. I have a hyper nodule & therefore the hyper is permanent but I’m yet to have it completed.

I think the actual procedure is very simple. I believe you stop carbimazole around 2 weeks before the treatment. You will be given pre instructions. You attend an out patient appointment. You’ll have to sign a consent form and likely asked some questions & checks. When I had a radioactive iodine scan - women under 50 must sign to say they aren’t pregnant- for example.

Then swallow pill or liquid and drink water - I have heard it passed to you in a lead contained box type thing. (That my experience with the scan I had - the injection was in a lead line tube)

They may ask you to wait a short period of time - such as when you had a vaccine and they get you to sit & wait 15 mins or they might say leave straight away via a quiet exit so you stay away from others.

Afterwards you need to drink lots and be careful about cleaning / food prep. Especially if living with others & need to remain away from other. That likely not more than 2-3 weeks. You’ll be given a card about the procedure as you may set off radioactivity alarms eg at an airport for some months after.

How long have you been hyper & taking carbimazole?

What is your dose?

What are your levels do you need high levels of carbimazole to control levels adequately?

Your previous post said TSI antibodies were negative. How have drs determined the cause of your hyper is Graves.

Ultimately your treatment is dictated by you, if you aren’t comfortable with the doctors “suggestion”, even if they imply it’s your only option you simply say - no thanks.

Or if you want all your options open say you wish to wait a longer eg to arrange living arrangements ect. I been arranging things for 3 years now.

[Milynda in reply to PurpleNails]

Grave disease was determined by bloods and diagnosed by an Endocrinologist. I’ve had it about 2 years. My issue is more about what it will do to me long term once I have had the procedure. I am also concerned about whether or not it will make me feel sick and lose my hair.

[PurpleNails Administrator in reply to Milynda]

It’s unlikely treatment itself would cause sickness. If the dose was higher - such as levels used for cancer then- it becomes a possibility.

Some say they get a sore throat which can been treated with OTC pain relief.

Others say they have further side affects but medical establishment say they are not as a direct consequence of the treatment or perhaps an indirect symptom. EG hair thinning could occur from low thyroid levels.

There’s many that say achieving adequate treatment after is difficult. This is often as doctors treat by TSH which is unreliable and you remain under replaced. or conversion issues occur. Obtaining lio (T3) is extremely restricted, there are officially criteria to allow specialists to prescribe but it’s simpler for doctors to deny it all together.

Doctors including endocrinologist treat all low TSH as Graves. Don’t trust verbal diagnosis or results without verify what’s been tested and the result.

[Lalatoot in reply to Milynda]

You are confusing the treatment with radiotherapy for cancer which can make you feel sick and lose your hair.Radioactive iodine treatment is different. It doesn't make you feel sick or lose your hair. You go to the hospital and do the paperwork. You are taken into a room where a capsule is put into a tube and dropped into your mouth so no-one handles it. You swallow it with water. Then wait for a short period and then go home.

You cannot travel on public transport on the way home or for the few weeks after. You are given guidelines to follow for several weeks. These particularly affect direct contact with children. Also being in close contact with other adults such as sharing an office.

[Milynda in reply to Lalatoot]

How does it feel afterward.

[Lalatoot in reply to Milynda]

I had mine 7 years ago. I didn't feel anything particular afterwards. No pain or anything. I just got on with things and accepted that maybe I wouldn't feel 100% as the body adapted.It is important afterwards to have your thyroid blood levels closely monitored though. My endo dropped the ball on that one. She didn't test often enough and I was extremely hypo 6 months after the treatment by time she got round to it.

[SlowDragon Administrator]

Posts on forum that mention RAI and Graves’ disease

healthunlocked.com/search/p...

[bantam12]

Yes I had RAI, it’s not a procedure as such, you just swallow a pill so nothing invasive or uncomfortable. For me it was a great success and a huge relief to be rid of the Graves ups and downs. I had no side effects from the treatment and have been well on Levo since.

[Milynda in reply to bantam12]

Did you gain weight?

[bantam12 in reply to Milynda]

No I’ve always been skinny, wish I could put some weight on !

[pennyannie]

Hello again :

The treatment, such as it is called, is painless, quick, and you do not loose your hair :

However the long term consequences of RAI thyroid ablation are not clear nor does anyone tell you about them.

You are looking at an auto immune disease for which there is no cure, all that happens is that you are flipped from hyper to hypo and another set of symptoms which I found more debilitating.

I'm sending again the links I previously gave you, just in case anyone else is reading here and not aware of the most current research.

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

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