DIO2 results and T3

[Rocky]

I have received my DIO2 results yesterday from the Counsellor at Regenerus labs. I have AA homozygous, which means I have a gene from each parent. I understand that it is affecting my conversion from T4 and that I will need T3. Does it mean I need a combination of T4 and T3, or T3 only. I am currently waiting for an appointment with an Endocrinologist and have been told it will be 3 months or more because of backlog from Coronavirus. I had the DIO2 test done as I had advice from members and also read posts about conversion which I could have written myself. I have been having problems since last July, and several A and E visits with heart problems. I have Hashimoto's and been on Levothyroxine for 13 years. I will post nearer the time of my appointment to ask about the Endocrinologist, as I know it has to be private messages. I have been told when I rang to chase up my appointment that they do have Endocrinologists that specialise in Hashimoto's and not just Diabetes. I know from the wonderful people on this forum what to say to the Endocrinologist and that I will have yet another battle to ask for T3

[SlowDragon Administrator]

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

Private consultation and prescription would speed the process up

...NHS and Private list

[e-mail]

Private prescription enables access to Thybon Henning 20mcg tablets via specialist pharmacies in U.K. at £1 per tablet

NHS are currently being charged £118 for 28 tablets 20mcg T3 (down from £268)

Roughly where in the U.K. are you?

Many thyroid specialist endocrinologist are currently doing consultations on zoom

[SlowDragon Administrator]

Before starting T3 you need all four vitamins optimal

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Are you on strictly gluten free diet

[Rocky in reply to SlowDragon]

I should have put on my post that I have the list of Endocrinologists and I am just waiting to see who I get. I am in Sefton area and I am waiting for an appointment at Aintree University hospital. I have Pernicious anemia and have posted before that I am on 4 weekly B12 injections since November last year and that I take Calcichew 3 times a day as recommended by the Hematologist and my last level was 70. I no longer have my B12 tested as I have been on injections for 9 years and I have it on my medical records that I don't want B12 tested. I have got the Ingenious B complex to take but haven't been able to yet as I am in between blood tests for Thyroid and don't want to mess up my test results by going on and off it. I don't do a gluten free diet. Thanks for your help

[SlowDragon Administrator in reply to Rocky]

Essential to get FULL thyroid and vitamin testing done BEFORE booking any consultation with thyroid specialist endocrinologist

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

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

As you are on B12 injections, it’s also recommended to be taking a daily vitamin B complex, one with folate in (not folic acid) Do you do this

How much vitamin D in Calcehew, unlikely very much

Essential to test vitamin D twice year

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Unless you are vegan or dairy free unlikely low calcium

With Hashimoto’s, and certainly before trialing adding T3 you need to experiment with trialing strictly gluten free diet

About 85% of Hashimoto’s patients find gluten free diet helps or is essential

If you find it beneficial, you will almost certainly need to remain gluten free when on T3

Only do test early Monday or Tuesday morning and then post back via tracked postal service

Don’t test during heatwave

Come back with new post once you get full thyroid and vitamin testing results

Many private endocrinologist are currently doing consultations on zoom, so distance no object

[Rocky in reply to SlowDragon]

Thanks and I will be getting the testing done. I am really hoping to see an Endocrinologist face to face as my neck just keeps constantly swelling up, and I will definitely need a scan

[myfanwy1945]

My thyroxine didn't work untilI started taking Vitamin D3, then it worked and I lost some of the 3 stone I had gained

[Beachcombe]

Hi Rocky I notice you’re taking calcium and have been to A and E with heart problems. Do you know not to take calcium close to taking your thyroxine? I had a similar experience and it turned out to be taking my thyroxine and vitamin D and calcium supplement close together. It really messed up my heart rhythm and was very scary but when I stopped the calcium I was fine. I take my thyroid med on an empty stomach now and have nothing after for at least an hour. I’ve also seen a private endo in Bristol who will see you very quickly over zoom. But it’s not cheap....good luck

[Rocky in reply to Beachcombe]

I do know and don't take any Calcichew until 5 hours after my Levothyroxine. Thanks for the Endocrinologist advice but I can't afford to go private at the moment

[SlowDragon Administrator]

Endometriosis and autoimmune thyroid disease also called Hashimoto’s often run together

Absolutely strictly gluten free diet helps thousands of Hashimoto’s patients

It’s ALWAYS worth trying strictly gluten free diet and essential to trial GFree before considering adding T3

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

[Rocky in reply to SlowDragon]

Thanks for your help and information and I will look into going Gluten free