Graves Disease, Endo thinks I should have RAI and I'm not convinced?

[AlisonM55]

My latest blood results: Se thyroid peroxidase Ab 186 iu/mL (0 - 50 iu/mL)

T4 = 14.1, T3 = 4 and TSH = 2.4 I am currently taking 150 mg PTU/day

Any help/advice would be gratefully received. Thank you

[Clutter]

Alisonm55,

Have you had TSI or TRab antibodies tested to confirm Graves? Thyroid peroxidase antibodies usually indicate Hashimoto's which causes hypothyroidism although it is fairly common to have Graves and Hashimoto's in tandem.

I assume you don't tolerate Carbimazole? PTU is a second choice drug for controlling hyperthyroidism because it can elevate liver enzymes. If liver function is normal and you are comfortable on PTU I don't see why you should have RAI yet but if liver function becomes off then you will probably have to stop taking PTU.

[AlisonM55 in reply to Clutter]

Thanks for your response! I can't tolerate Carbimazole hence the PTU. Liver function was tested normal and I've never had a TSI or TRab test and yet they have diagnosed Graves? I should say this is my 3rd episode of hyperthyroidism in 10 years but I'm reluctant to have RAI or surgery. This forum is so useful, it's the first time I've come across it so thank you.

[Clutter in reply to AlisonM55]

AlisonM55,

3 x remission failures would indicate Graves. As long as you are well on PTU you can refuse RAI or thyroidectomy but if it causes liver issues you won't have any other option.

[Fruitandnutcase in reply to Clutter]

I was told throughout my block and replace treatment for Graves Disease that should I relapse I'd be given rai! Just a little pill said the endo' assistant holding up an imaginary 'little' pill between her thumb and finger. Each time it was mentioned I said I didn't want it. After I was discharged I went to see my own GP because I was worrying about relapsing etc. I also wanted to distress my life and that wasn't going to happen if I was worrying about rai, anyway I told her I did not want rai and could I be forced to have it - no, if I wasn't forced to have it could thehospital refuse to treat me and the answer to that was no too.

I did well on block and replace and I just didn't want my thyroid killed off, I would still have Graves Disease even though I didn't have a thyroid. I said that if I wasn't able to take carbimazole for any reason then I would have to think again but until then I wasn't going to have rai.

Obviously if I was having my thyroid removed / abated because of cancer that would be different but that wasn't the case do my thyroid and I are still there gether for the time being and hopefully for the future. Good luck with it all.

[AlisonM55 in reply to Fruitandnutcase]

Thank you so much! It's so reassuring to hear others in the same boat as me. I feel as though I am being bullied to have something more drastic done but will still have the Graves!! Good luck to you too

[Fruitandnutcase in reply to AlisonM55]

I also looked around for evidence of people being on anti thyroid drugs for the long term. I think Louise at TUK has an article by Dr Toft that came from from Pulse that talks about that and I'm sure I had other stuff. I can't get my hands on it at the moment but I've just Googled 'Long term use of anti thyroid drugs' and found this for starters , it talks about carbimazole but I imagine PTU would be similar

livingwithgravesdisease.com...

[Dk12345]

I had RAI done 3 years ago and it was a horrible decision for me personally as I will now be on thyroid medication the rest of my life. I have wasted this entire year cycling through different medications and dosages trying to find the correct one. I would recommend focusing on improving your diet, finding ways to reduce stress (ex: meditating), and taking natural supplements that can help keep the thyroid hormone from getting into your cells. The Thyroid Connection by Amy Meyers is a very comprehensive book on thyroid conditions, treatments, and reversing your autoimmune disease. Hyperthyroidism is dangerous so you will need to make sure to be closely monitored by your doctor, but there is still a chance you can reverse your symptoms and save your thyroid from surgery or RAI.

[AlisonM55 in reply to Dk12345]

Thanks for the advice. I'll get the book

[Meanbeannyc in reply to AlisonM55]

Agreed. I had TT for Graves and it was the worst decision of my life. Don’t do it

[bantam12]

I had RAI and I have nothing negative to say about it, best decision I made although in reality I didn't have any other choices, already had surgery and meds never worked well for me.

[Meanbeannyc]

LMAO BRAIN FOGGGG DURRR

[Meanbeannyc]

We should all wonder

[Meanbeannyc]

I had Graves for ten years. I ended up killing off my thyroid with PTU, TSH NEVER became readable. So endos would say “you’re still hyper”!

So I was just a vegetable for years and no one would help me.

Just like now, VERY poor converter. Still a goddamn vegetable 1 year post op lol.

But I think I’m getting the hang of the meds now.

[Meanbeannyc]

If it makes you feel any better I am in one of the biggest cities in the world and still they don’t help me. I am looking to grey goose for help and using my body as an experiment lol.

[Meanbeannyc]

I’m sorry to hear you had a thyroid storm.

[Meanbeannyc]

I can’t read anymore. It has gotten me into such a mess. I have to listen to my body. I had reduced my levo and added T3 and now I’m on a terrible rollercoaster. I should’ve never reduced my levo. Now I gotta get back up. lol. At least I’m learning!

[Meanbeannyc]

Wow I feel for you. Were you not on ATDs and/or beta blcokers?

[Meanbeannyc]

I used to live on propranolol. Damn I’d chew those things like tic tacs. Idk how I never went into a thyroid storm. At one point my TT3 was around 1200 and my TT4 was 30.

HOW DID I NOT EXPLODE?

[Meanbeannyc]

Oh wow. U had a TSH. I never had one! lol. Even when hypo symptomatic.

[AlisonM55]

Hi I never had the RAI and took the PTU for 18 months and all ok now. Unfortunately 2 years ago my breast cancer came back and I endured gruelling chemo followed by double mastectomy. I feel absolutely fantastic now and I’m training for the London Marathon. Hope you’re all well 😘