Thyroid and Ataxia

[PeteW]

Hi, I’m interested to hear if anyone has had their Thyroid tested privately, specifically for a faulty DI02 gene and low T3 count (RT3 blood test) ? A faulty DI02 gene is likely to mean a low T3 count in the Brain but the test/treatment isn’t available on the NHS.

[Chloe-louise]

Hey, I got diagnosed with an under active thyroid when I was 14, my T3 levels were low not sure about the other ones. They generally have to up my Meds every 6 months, probably due to my age. With me they did it on the NHS, so don't know if you've been given dodgy info, or if it's because you want the other levels checking? X

[Marz in reply to Chloe-louise]

The Gene Test is not done on the NHS - see my reply below 😊 Do you have Hashimotos ?

[Marz]

thyroiduk.org

The above website covers Private Testing companies and DlO2 tests. The latter can affect the conversion of the T4 into the ACTIVE T3 hormone needed in every cell of the body. More receptors in the brain than any other area. T3 rarely tested in the NHS - sadly as it is the most important test. T3 as a treatment now restricted on the NHS due to costs. Almost £300 for 30 tabs - something that costs me just over a euro here in Greece.

Thyroid anti-bodies should always be tested to rule out Hashimotos but the NHS only test one - Sigh ! Both TPO & Tg should be tested.

So the correct thyroid testing is TSH - FT4 - FT3 & TPO & Tg Antibodies. See above link - then under the heading About Testing. The NHS rarely do them.

Why Isn't my Brain Working - an excellent book by Dr Datis Kharrazian. Website full of information. Gluten molecules can penetrate the blood brain barrier and cause inflammation. Gluten Ataxia ?? With Hashimotos - B12 is often low causing neurological issues .... Folate - Ferritin & VitD also will be low and should be tested.

[PeteW in reply to Marz]

Thanks for the info. No Hashimoto but hyperthyroidism but I’m usually topsy-turvey with my symptoms anyway.

Usual BT for above vit’s and minerals etc they give normal results but given the limits VARY WILDLY from lab to lab, I’m not sure.

It’s ironic that the Drs are supposed to be super intelligent and are rewarded with 6 figure salaries are astonishingly blinkered and, frankly, ignorant ! There simply are NO normal limits where Ataxians are concerned. Each case is individual. Comparing an Ataxians blood contents to Mr and Mrs average is mind numbingly stupid. Idiocy at the highest level.

£300 for 30 tabs is significantly lower than what the NHS are paying for plasters. Infinitesimal.

[Marz in reply to PeteW]

Do you have any blood test results for your Thyroid ? I am on the Thyroid UK Forum where there are around 80,000 members and I read quite often how Docs rarely understand Test results - I have read of people being treated with horrid treatment for Over Active Thyroid - when in fact they had Hashimotos leading to under-active thyroid.

Have been there for over 6 years - click onto my username and you can check me out - Bio/Posts/Replies ....

Plasters and Rubber gloves I believe come at a price !!

[Marz in reply to PeteW]

Hashimotos - can lead to being both HYPER and HYPO

[PeteW]

Didn’t know hash was related to hyper

Interesting read on your history ref iodine and thyroid. I eat W aka I seaweed when my body tells me too (iodine)

Yes got a print out of BT results. B12 looks low to me at 600 (I take industrial strength B12 tabs as well)

[Marz in reply to PeteW]

Sorry - I do not have recall of reference re iodine ! Are you sure that was my Bio ?

Yes Hashimotos - is auto-immune and as the thyroid is attacked thyroid hormones are dumped into the bloodstream causing a Hyper situation. When things settle one becomes HYPO.

thyroiduk.org

Everything you need to know in the above website

B12 at 600 is good/reasonable - but do remember if you were supplementing at the time your results will be skewed. Keep on supplementing - and do not forget the Folate/Folic Acid/B9

[PeteW]

I thought it was your Bio because I clicked on your name.

I’ve looked at the website and it looks interesting.I will have to research the minerals you mention And will read that book

I read a book called the brain diet and found it to be groundbreaking for me

[Marz in reply to PeteW]

Ah yes I see what you mean - it was Iodine in one of my posts. Thought you meant within the Biography itself !

[PeteW in reply to Marz]

So I’m no going mad as well....good to know🤙

[patsyday]

I have undiagnosed cerebellar ataxia. I am told by the ataxia doctors that my thyroid is ok but I have lots of symptoms of thyroid trouble. I am dizzy all the time and really tired all the time no matter how long I'm in bed. I have thyroid nodules and they only checked them to make sure they are benign which they are. nothing ese was checked. My skin is really itchy. tests for thyroid came back ok .Dermatologist told me I do not have a skin problem and that it is neural. I have sore joints and a frozen shoulder and now I have a dry mouth in the morning. I am going back again to have my thyroid checked. I can't help but think that my thyroid is causing all my misery.Does anybody else feel the same way .I've read hashimoto is responsible for 80% of nodules. Do you have nodules? It would be nice to find the cause of the ataxia. I've been going to the doctors for over 4 years now but no luck. I'm really bad with my balance now and muscles don't work very well. My neurologist tried me on mycophenolate but it did not agree with me. It's am autoimmune drug .It would be interesting to hear what others have to say