RAI or Neomercazole

[Confusedwesty]

I have been diagnosed with Graves Disease and need to decided whether to try take the meds Neo-Mercozol for 18-24months which I believe as a 50% chance of working or RAI. I am so confused. Has anyone had success on Meds? Has someone done RAI and wished they didnt?

[Lalatoot]

I was on the meds for 4 or 5 years and came off them twice to see if all was okay before I had RAI.

[helvella Administrator]

If you have RAI, that is a once and for all procedure. No going back. No change of mind is possible.

If you take Neo-Mercazole (or another anti-thyroid medicine), you can see how it goes and, if you wish, change your mind.

No-one should ever be put in the position of having to make their decision whether or not to have RAI quickly. You need the time to read, investigate, discuss and make up your mind. I am very pleased you are here to discuss with others who have real experience. Some good; some bad.

There is always the possiblity that other options will become possible. Have a read here (without getting too excited - it is still research):

btf-thyroid.org/research-ne...

It does illustrate that the apparent RAI or Neo-Mercazole decision could have at least another choice sometime in the future.

(A few people need a second go with RAI. But they don't know that when they make the decision so, it is effectively a once-and-for-all decision even if practice makes it otherwise.)

[Confusedwesty in reply to helvella]

Wow thank you for the responses! Eventhough the RAI has been made for me I have decided to rather take the meds and take my chances.

[pennyannie]

Hello Confusedwesty

I was diagnosed at 56 with Graves Disease in 2003 and had RAI in 2005 and deeply regret this treatment. I wasn't given any options, though well on the Carbimazole, and think my treatment was age related. There is a more detailed account on my profile page.

The treatment options aren't great, are they : drink a toxic substance that goes through your whole body or have your throat slit open.

However there are no known long term issues to staying on the anti thyroid drugs and this surely has to be the safest and best option choice to consider.

Graves Disease is an auto immune disease that happens to attack your thyroid.

Your thyroid is the victim in all this and not the cause - the cause is your own immune system attacking your body.

Removing your thyroid simply removes the symptoms experienced, but living without a fully functioning thyroid comes with it's own set of symptoms and problems.

The thyroid is a major gland responsible for full body synchronisation, your mental, physical, emotional, psychological and spiritual well being, your metabolism and your inner central heating system.

Are you with a positive for the Graves TSI/TRab antibody test ?

You might like to take a look at the website run by Elaine Moore - this lady is a medical researcher and has Graves and was treated with RAI back in the late 1990's. Her website is stateside but offers everything every Graves patients needs to know. There is also an open forum much like this amazing site where you can ask questions of the members and Elaine herself answers questions when she thinks necessary.

There is another post currently running on here today which I believe will be of interest to you : not sure how I find it now without loosing all this ?? If you can, see if you can check out a post entitled :- Untreated hyper a & e written by StrugglinThyroi -

I'm sorry but don't know how to do this for you :

[helvella Administrator in reply to pennyannie]

Here it is:

healthunlocked.com/thyroidu...

[pennyannie in reply to helvella]

Thank you

[minkjaere]

Hi,

I had Grave's disease first in 2013 and after taking neomercazole for 8 months was on remission. After 5 years it came back, took the same meds for 7 months and now in remission again. Both these times, i should be taking the meds for at least 18 months but my body would not take it. I have terrible side effects.

Rai is permanent. The endo also advised me to do it since it was my second time. My prob is, my body reacts badly to meds (Both to neo mercazole and levothyroxine) that i i can only take a tiny dose each time. Once i do the rai, i have to take the meds all my life (levothyroxine). What will happen to the quality of my life then? I also met with people that had the rai that regretted it. She said she has to take the meds 100mg levo all her life and the worst part is that, she still gets the symptoms of Grave's disease once in a while esp when is stressed.

My point is, rai is permanent. It is not like everything will be ok after you had it. Flr some yes, for some no. And after you had it u need to take the meds all your life. I knew some women that took years before they got the correct dosage. It was a struggle.

If i were you, why don't you try to take meds first. Like me, it is possible to be in remission

[mythyroidlife]

Hi Confusedwesty

I was on the tablets for 18 months and told I had a 50/50 chance.. for me I was fine for a year once I stopped taking them, I then quickly fell ill again.

I was given two choices radiation or surgery. For me personally at the time me and my wife were trying for children and my endo said that I couldn’t try and conceive for I think it was 6 months ( hell no)

Plus my endo told me that I will definitely go under active and will need tablets for the rest of my life, he also said that radiation doesn’t always work first time so you might need to go through it again.

So I chose the surgery and it took a while to get the medication correct but I have had no problems ever since, I just stick to a really healthy diet and stopped drinking caffeine.

Personally if I was you. I would take the tablets for 18months. Then see how you get on after. You might be one of the 50% that doesn’t relapse.

Good luck.

[Fruitandnutcase]

I would try the tablets. I was treated with ‘block and replace’. That took exactly a year. That was in 2012 and I’ve been in remission since then. I went totally gluten free to see if that helped reduce the thyroid antibodies ( it did) I’m not sure whether or not it matters but it keeps me happy.

Once your thyroid has been destroyed then that’s it! I agree with mythyroidlife above and with hellvella, I would give the tablets a good try. I would also ask for surgery rather than a radioactive drink or pill or however your hospital does it.

In my case should my Graves come back I will be asked no for another round of block and replace - even though I was told the next thing will be RAI.

If I were you I’d make it your mission to read as much as you can about treating Graves’ disease so that you are very knowledgeable about it all. I don’t know how old you are but do you know that a vaccine is being tested at the moment? Once your thyroid has been killed off then you can’t ever try that.

Good luck with it all, just don’t be pushed into something you aren’t sure about.

[SilverAvocado]

Confusedwesty, a few people have mentioned it, but not all, be aware that after RAI you will be hypothyroid. This means taking thyroid hormone replacement for life.

It's a bit of an out of the frying pan into the fire situation, as doing well on thyroid hormone is a roll of the dice. Some people do fine, some do fine for a decade or two and then struggle, some have a bit of a rubbish time all through, and others have a really terrible time and are disabled long term.

It's often said that doctors push for RAI or surgery, damaging or removing part of your thyroid, because then you get ticked off their list and their job is done. Whereas on medication you may be their patient for a year or more, which gives them more work and admin to do. But obviously for the patient, they are just handed on to a different doctor and continue their thyroid hormone replacement long term.

[Minimol]

Hi Confusedwesty

May I ask what your blood tests results are.

[Confusedwesty in reply to Minimol]

TSH 0.01

FT4 30pmol/l

Ferritin 861ng/mg

ANTI tg antibody 2.25 iu/ml

Anti TPO antibody 0.24iu/ml

I havent gotten my TSH receptor antibody yet

And my cortisol is 21nmol/l

[misky]

Hi Confusedwesty,

I was diagnosed in 2012 (I was very ill, FT4 > 100) and was on medication (carbimazole) for exactly one year. After that, I went into remission and Graves hasn't reared its ugly head since.. I would definitely try medication first, there's no need to kill off your thyroid now. I've had 7 medication-free years until now and I'm so happy with that. I hope I can add many more years. Don't make any rash decisions, there's no need to rush. Read about it, ask experts for advice, make up your own mind. It is your body.

By the way, I didn't do anything special like stop eating gluten or follow a special diet, I just tried to avoid stress, which is bad for auto-immune diseases.

Wishing you all the best!!