New member seeking advice for underactive thyroid/hashimotos for 20yrs. Tests showing I need less thyroxine but symptoms show otherwise.

[Rhub4rb]

Thyroid problems run in my family. My grandma and father both had hashimotos and had their thyroids removed. I had been asking for tests on my thyroid for years as I showed signs but as I was not overweight and T4 levels 'normal' noone listened. Eventually a private doctor did TSH which was slightly elevated and put me on 50mcg of thyroxine, a week later I was hospitalised with major organs shutting down and my TSH reading had jumped to 15. I was put on 200mcg and for years this was fine. Hashimotos has never been mentioned to me but I would assume theres a good chance this is what I have as my T4 levels were always fine.

4 years ago my results were showing I was taking too much (TSH very low and T4 around the 26 mark - one result showing it as 36) and I reduced my levothyroxine to 150 with disasterous results. All the usual signs of being seriously underactive (hair thinned, dramatic and unexlained weight gain, bad skin, slow movements, even worse lethargy than normal) but the blood results were still showing that I was taking too much thyroxine (still very low TSH and high T4). My endo wrote to my docs and told them to let me go back on 200 as I wasn't doing well on a lower dose and I was aware I wasn't going to live til I'm 80 and its quality of life.

A year ago I agreed to reduce my dose again but to 175 and the symptoms of being underactive started again just not as quickly. The other day I persuaded them to put me back up to 200 and hopefully things will improve.

Someone mentioned to me in a fb thread that they were put on a small dose of T3 as well as levothyroxine and that made a huge difference to them and they could finally get out of bed in a morning (something I struggle with every day no matter what dose of thyroxine I'm on. I've done some reading and am now wondering if its possible I've got a problem converting the T4 into T3.

I have had T1 diabetes for 30 years suffering many complications including severe gastroparesis, internal (autonomic) and peripheral neuropathy, impaired kidney function and was told years ago (before my thyroid was diagnosed) that my liver function was dangerously low though noone has mentioned this since. I hardly eat any processed food and mostly avoid any type of bread.

I am having bloods tomorrow for my T3 levels and iron and vitamin D (as these were all my gp can manage) then I intend to start taking selenium, zinc and Vitamin D3 suppliments.

Can anyone offer me any advice? I have been referred to an endo but that will probably take a month or two and no endo has ever even mentioned T3 to me before.

[SlowDragon Administrator]

Welcome to the forum

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 Thyroid antibodies are raised

GP can and should test ferritin, B12 and folate

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

You need BOTH TPO and TG thyroid antibodies tested and FT3 at same time as FT4 and TSH

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

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

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 antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Understanding Hashimoto's

hashimotoshealing.com/under...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

As you have type one diabetes it's likely thyroid is also autoimmune

Susan Blum written good book on autoimmune issues including type one diabetes . The immune system recovery plan

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 and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy online for under £20

You need to be eating high levels of gluten for few weeks before testing

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

[Rhub4rb in reply to SlowDragon]

Thank you! When I spoke to doc yesterday and asked for other tests she said she was not able to order most of the tests and I'd have to wait and see the specialist so I didn't really pursue it. She said she definitely couldn't order the rT3. It is useful knowing I can get them done through these sites because if I can get them done in preparation for the endo appointment will speed things up considerably!

[SlowDragon Administrator in reply to Rhub4rb]

Any GP can test folate, ferritin and B12

Very unlikely any NHS endocrinologist offers reverse T3 testing.

Endo should offer to test both TPO and TG thyroid antibodies, but if TPO antibodies are negative often TG antibodies aren't tested.

TG antibodies may possibly be high due to diabetes anyway

healthline.com/health/antit...

Few endocrinologist seem to consider vitamin testing important, you may need to insist or test privately anyway. Same with coeliac test

[SlowDragon Administrator in reply to Rhub4rb]

Come back with new post when you get the vitamin D and iron results

[greygoose in reply to Rhub4rb]

Testing rT3 is a waste of money. It doesn't give you any useful information. Most important is to get your FT4 and FT3 tested. If your FT4 is up at the top of the range, and your FT3 below mid-range, you have a conversion problem, and your rT3 is going to be high. You don't need an extra test to tell you that. And, as you're taking 200 mcg but still don't feel well, I imagine that is your problem. Poor conversion.

But, high rT3 is not a problem in and of itself. It is inert and is gone in a couple of hours, converted to T2, and then T1 to recycle the iodine. It doesn't block T3 receptors, as used to be thought, because it has its own receptors. It just a safety valve to stop you going 'hyper', and to conserve energy when necessary. And it can be caused by many other things than poor conversion, but the rT3 test won't tell you what they are. Low-calories diets, low ferritin, infections, high cortisol, etc. etc. etc. can all cause high rT3. Some you will know about, others you can test for. So, best to spend your money on things like cortisol testing, rather than an rT3 test.

[HughH]

It seems that you feel better on 200 mcg of levo but you are not completely well?

Your symptoms and family history of thyroid issues points to a genetic condition known as Impaired Sensitivity to Thyroid Hormone, sometimes called Thyroid Hormone Resistance. It causes hypothyroid symptoms and requires very high Free T3 levels (often above the top of the normal range) in the body to overcome the resistance.

[london81 in reply to HughH]

i think this is what i have. i’m on 6 grains of ndt and just feel normal with middle of range heart rate pulse etc, and optimal vitamin levels. thank you for the info

[london81 in reply to HughH]

is this the D102 gene condition?

[HughH in reply to london81]

DI02 is about conversion from inactive T4 to the active thyroid hormone T3. A blood tests which shows good Free T4, in upper part of range, but Free T3 in the lower part of the range will show poor conversion.

With Thyroid Hormone Resistance conversion is not the issue. There can be good Free T3 levels.

[london81 in reply to HughH]

amazing info thank you

[SlowDragon Administrator in reply to london81]

It's actually DIO2 (letters) not D102 (numbers)

Can inherit from one parent - Heterozygous

Or both parents- homozygous

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

bluehorizonmedicals.co.uk/t...

[Rhub4rb in reply to HughH]

Yes on 200mcg I feel better than I do on 175 but I still dont feel 'right'. I don't know if this is relevant but I started taking metformin last year (even though I am low carb I still show signs of insulin resistance) and for the first 2 weeks felt like a different person I would wake up and get out of bed instead of spending the first few hours feeling like I'd drank 3 bottles of wine the night before.. when someone said to me in a facebook thread that when they were started on T3 they could finally get out of bed in the morning I could certainly relate to that!

I've just sent off the ultra vit + rT3 test so should have those results in a week or 2.