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

[Lora7again in reply to Meanbeannyc]

This thread is 3 years old.

[Meanbeannyc in reply to Lora7again]

LMAO BRAIN FOGGGG DURRR

[Lora7again in reply to Meanbeannyc]

It is easily done ... I wonder if she had RAI?

[Meanbeannyc in reply to Lora7again]

We should all wonder

[Lora7again in reply to Meanbeannyc]

I am trying to avoid having either RAI or my thyroid removed. The first thing the Endo suggested was that and here I am 10 years later still with my thyroid.

[Meanbeannyc in reply to Lora7again]

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.

[Lora7again in reply to Meanbeannyc]

I'm sorry to hear that my TSH is 0.38 so not too bad at the moment but I am keeping eye on it. I really need a blood test because it has been 6 months since my last one. I will have to get Medichecks to do one once my local hospital allows private testing again. When I had my thyroid storm last year and was admitted to hospital they only tested the TSH which was within range but I believe my T3 was over range but they didn't test that. I then went to my GP who also only tested my TSH and it was still in range. It is very frustrating the way thyroid patients are treated by the NHS.

[Meanbeannyc in reply to Lora7again]

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.

[Lora7again in reply to Meanbeannyc]

Yes it the same the world over I'm afraid. Are you a member of Elaine Moore's site? because she had RAI and regretted it so she started a support site for other sufferers. She helped me a lot at the beginning and her site is full of useful information.

Here is a link to her site

elaine-moore.com/

[Meanbeannyc in reply to Lora7again]

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 in reply to Lora7again]

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

[Lora7again in reply to Meanbeannyc]

Yes it was very scary and A & E thought I was having a heart attack. It was my own fault I had been to a wedding and drank a few too many glasses of champagne and coffee which I now avoid.

[Meanbeannyc in reply to Lora7again]

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

[Lora7again in reply to Meanbeannyc]

No because I thought I was in remission like now. I have never taken them because I don't need them and I know how hard it is to wean yourself off them. I try to avoid stress and coffee which give me symptoms.

[Meanbeannyc in reply to Lora7again]

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?

[Lora7again in reply to Meanbeannyc]

I think I am not as bad as you because my TSH was 0.002 and I was untreated for 2 years because my doctor thought it was the menopause. I did lose a lot of hair and some of my nails dropped off which was very distressing. You can read my story on my profile page if you are interested.

[Meanbeannyc in reply to Lora7again]

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

[Lora7again in reply to Meanbeannyc]

This can happen because mine means nothing because when my TSH was 0.80 I felt underactive so I took Elaine's advice and she told me to take Levo which I did for a short time and I went into remission for 4 years but then I had a relapse.

[AlisonM55 in reply to Lora7again]

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 😘

[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.