Immune therapy for Graves: Hi I have an... - Thyroid UK

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Immune therapy for Graves

lisa_59
lisa_59

Hi I have an overactive thyroid and a consultant who's keen for me to RAI which I am reluctant to have. I have Graves and I said surely a better option is to treat this. She said there are trials to boost the immune system.....so I'm interested in knowing has anyone on here tried this & what are the side effects

TIA

Lisa

28 Replies
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I'm not sure people with autoimmune diseases need their immune systems 'boosted', because they're already over-active. :(

lisa_59
lisa_59 in reply to greygoose

Oh maybe I got it wrong I just assumed it was a boost. It was a trial to treat Graves

HIFL
HIFL in reply to lisa_59

You didn't get it wrong. There are two schools of thought on autoimmunity--one group thinks your system is overactive, the other thinks it's underactive. It would only be correct to says it's dysregulated or not normal. Have you heard of LDN? It has helped some with autoimmune conditions.

lisa_59
lisa_59 in reply to HIFL

Thank you HIFL. No I haven't heard of this. Have you tried it?

HIFL
HIFL in reply to lisa_59

No, just read about it. I would definitely google it, Low Dose Naltrexone. It's a prescription substance, so you'd have to work with a doctor.

lisa_59
lisa_59 in reply to HIFL

I've just googled it and it's also used to treat breast cancer which I am recovering from. I'm seeing the breast consultant next week so I'll talk to her about it. Thank you so much xx

HIFL
HIFL in reply to lisa_59

You are more than welcome. Are you doing block and replace, taking something like carbimazole/tapazole/methimazole? If your T3 and/or T4 are low, you should be taking levothyroxine at the same time, the "replace" part of block and replace. More here: tiredthyroid.com/graves.html

lisa_59
lisa_59 in reply to HIFL

I'm on Carbimazole, but my gut doesn't like it

HIFL
HIFL in reply to lisa_59

Hopefully, the LDN will help then.

lisa_59
lisa_59 in reply to HIFL

I'm certainly going to do some research on it & I think it might be worth trying rather than resort to RAI :)

SlowDragon
SlowDragonAdministrator

Read up about gluten and Graves' disease too

Ideally ask GP for coeliac blood test first, plus ask that they test vitamin D, folate, ferritin and B12 as well

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

lisa_59
lisa_59 in reply to SlowDragon

Hi I have been tested for coeliac but it always comes back negative, though I don't tolerate dairy and wheat well

SlowDragon
SlowDragonAdministrator in reply to lisa_59

Negative testing for coeliac does not rule out gluten intolerance at all

lisa_59
lisa_59 in reply to SlowDragon

Mmmn maybe I should be looking at my diet too

HiddenThis reply has been deleted
lisa_59
lisa_59 in reply to Hidden

I know I've heard so much about RAI. I'm adamant I'm not having it

dusty2
dusty2 in reply to lisa_59

There are some people on here who had RAI successfully.

It's a choice I made for myself, I was told what my options were & opted for RAI.

I am so thankful I had not read the comments on here or I would have been put off having it & who knows how I would be now.

lisa_59
lisa_59 in reply to dusty2

Hi Dusty I'm really pleased it worked for you, but I'm worried I'll be one of the ones it doesn't work for. If I could be 100% sure it would make me feel better I'd jump at it

dusty2
dusty2 in reply to lisa_59

Like I said I would be the same Lisa if I had read comments. I don't think we will ever find out how many people it worked for as most people who are well after it have no need to come on here now. I only joined once I was underactive but luckily I am fine taking Levothyroxine.

Good luck with what treatment you decide on.

lisa_59
lisa_59 in reply to dusty2

Thank you Dusty I'm looking at the benefits of magnesium at the min but if that doesn't help I am going to have to do something. Love your name I'm a huge Dusty Springfield fan x

dusty2
dusty2 in reply to lisa_59

😀

HiddenThis reply has been deleted
lisa_59
lisa_59 in reply to Hidden

Ooooh thank you I will

If you post in the HYPERTHYROID

Board you may get answers .. that may help .

I have Graves’ disease and after becoming Euthyroid have stayed that way for around 3 years by treating my Immune System

ie... feeding it all it was depleted of

Because iof the chaos of Graves

My levels are now all optimal

Using several supplements ..

Lots of people on this site and another I m on use this method to great success .

I’d love to know more about your trials ..

Best of luck

Mx🌹

Oh interesting I'm willing to give anything a go. So pleased you are feeling better. Where do I start? xx

I'm in remission now since 2010 and my son in remission since 2006. Unless you actually have Celiac there is no scientific based evidence that Graves has anything to do with gluten.

What you do have to be careful with is iodine --- loads of information that too much iodine can trigger the autoimmune attack (contrast dyes, seaweed, supplements etc).

My son and I took methimazole for 4 years -- using a small bit of thyroid replacement levothyroxine to keep our T4 in a good place -- and we stayed on that therapy until our TRab tested negative.

Now we both avoid anything with high iodine\ -- which is sad because we both loved sushi (we use soy wrappers now) and have not had another occurrence of Graves.

Be careful of those websites out there that lead you to all these outrageous diets and supplements that were designed to treat alcoholism (which is what Naltrexone of LDN was desigened for). I had a friend develop psoriasis after starting LDN.

In Autoimmune disease, there is a missing component in the immune system --- the Regulatory T Cells that should be shutting down any attack on our own bodies. So in that sense, the immune system is needing to gain more T-Reg cells so that the antibodies will no longer be produced.

Remission from Graves is when the TRab antibodies are no longer being made. Unfortunately, RAI and surgery will often leave the TRab even higher than they were before. The main treatment is a treatment that addresses the immune system --- which methimazole does.

Best to you!

Oh thank you - you might have just stopped me making a mistake with the LDN. I'm so against RAI whatever I do next it wont be that. I will research Methimazole

Hi was you underactive?

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