Graves Disease - non conventional treatment - Thyroid UK

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Graves Disease - non conventional treatment

Natsw23 profile image
23 Replies

Hi There, I have been diagnosed with Graves Disease for around 3 years now. I have been taking PTU 150mg x2 day since having a flare up after the birth of my baby in 2018. I was wondering if anyone had any advice on any supplements or dietary advice they can give me to supplement conventional medication? Many Thanks

23 Replies
greygoose profile image
greygoose

How were you diagnosed with Grave's? Were your antibodies tested: TRAB or TSI?

Natsw23 profile image
Natsw23 in reply to greygoose

Hi I think antibodies!

greygoose profile image
greygoose in reply to Natsw23

Don't want to poke my nose in where it's not wanted, but I think it's in your best interests to know. Was it antibodies? If so, which antibodies? :)

Natsw23 profile image
Natsw23 in reply to greygoose

Hi no worries at all. Tbh I’m not sure as when I was diagnosed all the info went over my head a bit! I think TSI

greygoose profile image
greygoose in reply to Natsw23

OK, so if that was positive, you do have Grave's. But we do like to check because it has been known for people to be misdiagnosed due to doctors relying on the TSH. :)

Natsw23 profile image
Natsw23 in reply to greygoose

I have replied below and my drs note says positive TSH antibodies.. so does this mean I don’t have Graves?!

greygoose profile image
greygoose in reply to Natsw23

It means you do have Grave's if it was positive. :) It's TSH receptor antibodies - TRAB - not TSH antibodies.

helvella profile image
helvellaAdministrator in reply to greygoose

Just to interject with a snippet of irrelevance. :-)

There are such things as TSH antibodies. If present, they bind to molecules of TSH in the blood and form a complex known as macro-TSH.

In a TSH blood test, macro-TSH can falsely elevate the result, if present, but it does depend on the test method. Some test methods are sensitive to macro-TSH, others are not.

greygoose profile image
greygoose in reply to helvella

Yeah, I knew that, but I didn't want to get complicated.

pennyannie profile image
pennyannie

Hello Natsw23

You might like to take a look at the Elaine Moore Graves Disease website.

This lady has the disease and went through RAI in the 1990's, becoming very unwell and not finding much help in the conventional medical system.

She was, and still is, a medical researcher and now with several books published and a very well researched and respected website available for all Graves patients to read and learn from.

There is an open forum much like this amazing website where you can ask questions of the other forum members and Elaine takes an active role when necessary.

There are various sections within the website covering the auto immune issues, and what one can do for oneself, including suggestions on life style, food, relaxation and alternative, holistic treatments and options not generally recognised by the mainstream medical establishments.

There is a vaccine currently being trialled for Graves and yes, if you can, stay on the AT medications as the other options are very drastic and to loose a major gland for an auto immune disease isn't really in anyone's best interest.

I'm with Graves post RAI in 2005 and deeply regret this treat.

I am now self medicating as I am unable to obtain the full spectrum thyroid hormone replacements on the National Health Service.

Natsw23 profile image
Natsw23 in reply to pennyannie

Thanks so much I will look into this!!

pennyannie profile image
pennyannie in reply to Natsw23

Hey there again,

There have been instances on here of people being prescribed anti thyroid medications incorrectly so it's best to be diligent and just get confirmed what antibodies have been tested and which antibodies were found to be positive.

For Graves you need a positive TSI/TRab to confirm the diagnosis.

Better safe than sorry.

Natsw23 profile image
Natsw23 in reply to pennyannie

Hi I have just checked.. at diagnosis I was TSH receptor antibody positive

pennyannie profile image
pennyannie in reply to Natsw23

I think that stands for TRab - ok - I see that greygoose is talking with you so I shall butt out and learn a bit more.

Natsw23 profile image
Natsw23 in reply to pennyannie

I mean I still don’t understand all this ... so don’t worry about giving your info! The more the merrier x

greygoose profile image
greygoose in reply to pennyannie

Oh, please! I doubt I know as much as you about Grave's. I have Hashi's.

pennyannie profile image
pennyannie in reply to greygoose

My learning curve started, in the main, with you, some 4 years ago.

I was diagnosed with Graves in 2003 and being totally compliant had RAI in 2005.

Becoming very ill in some 5 years ago and housebound I came on here looking for help as nothing was forth coming from my doctor and I was called a conundrum.

I've learnt of my situation back to front !!!

Thanks to you and your colleagues I'm now self medicating, - and just wish you were my doctor way back when I was diagnosed.

greygoose profile image
greygoose in reply to pennyannie

It's very sweet of you to say so. Thank you. :)

pennyannie profile image
pennyannie in reply to greygoose

Just saying it how it is - respect .

SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to test TSI or Trab antibodies to confirm Graves’ disease

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies or Graves’ disease

Ask GP to test vitamin levels

You may need to get full Thyroid antibodies testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

strictly gluten free diet helps thousands of hashimoto’s or Graves patients

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

Lora7again profile image
Lora7again

Have you tried for remission yet?

Natsw23 profile image
Natsw23 in reply to Lora7again

What does this mean??

Lora7again profile image
Lora7again in reply to Natsw23

It means reducing the PTU and eventually stopping it to see if your thyroid recovers. I did this and went into remission for 4 years.

Here is some articles on Elaine Moore's site ... I would read them and join her site because she knows a lot more about this disease than me.

elaine-moore.com/Articles/G...

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