Hi, I’m a new member and know so little about m... - Thyroid UK

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Hi, I’m a new member and know so little about my thyroid condition. I’d like some advice!

Lizlife profile image
11 Replies

I was finally diagnosed with an under active thyroid about 5 years ago and have hovered around 125mcg of levothyroxine. As far as I knew, that was it, problem solved! But I feel like I know nothing about my body and what’s going on. I don’t know what type of hypothyroidism I have and I don’t know how I should be helping myself naturally? I’ve recently had my thyroid medication increased as my TSH was low but now I think it’s too high as I have anxiety and palpitations. I also have a lump in my groin which is under investigation but the doctor doesn’t seem worried...waiting on blood results. Can anybody point me in the direction of how I can improve how I feel even when thyroid levels seem fine. I feel like shit all the time (excuse my French). My mood is all over the place and energy levels are up and down...would basically like some of the people on here who seem to know a lot to give me advice. Thank you very much xxx

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Lizlife
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11 Replies
Treepie profile image
Treepie

I think you will have problems sorting this whilst we are in the grip of the virus.Ideally you need to post test results for TSH,FT4,FT3, ferritin,folate,B12 and D3 with the ranges which are shown in brackets ,also antibody results.

I suggest in the meantime you read the info on the Thyroid UK web site .

Lizlife profile image
Lizlife in reply toTreepie

Hi there! Thank you for the info. I actually had a thyroid test done yesterday so am awaiting results. Maybe I will be able to get all the info from them after the weekend. Would a normal thyroid test show all of the aforementioned or do I need to request more sepecifics? Xxx

Khan-123 profile image
Khan-123 in reply toLizlife

Hey welcome and I hope God gives you good health!

You will really struggle getting the above mentioned testing via NHS especially at this current time. You will have specifically request them and be prepared to fight for it.

All the best!!

Treepie profile image
Treepie in reply toLizlife

When first diagnosed often some but not all are tested.Later generally only TSH which GOs wrongly think is all that is needed.Many on this forum use private testing to get the full range.

SlowDragon profile image
SlowDragonAdministrator in reply toLizlife

Most NHS GP’s only test a TSH, which is completely inadequate

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

Ask GP to test vitamin levels and antibodies

You may need to get full Thyroid 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 .

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, 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...

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 primary 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_...

List of hypothyroid symptoms

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

Lizlife profile image
Lizlife in reply toSlowDragon

Wow what an incredible reply! Thank you so much I will definitely pay privately and get that done. I live off gluten lol so will need to make some changes! I am vegetarian so get a lot of vegetables in my diet and eat well. I’ve just started taking zinc and selenium also xx

SlowDragon profile image
SlowDragonAdministrator in reply toLizlife

As a vegetarian you need to be testing B12, iron and ferritin regularly, at least annually

What vitamin supplements are you currently taking apart from zinc and selenium

Low B12, low iron and low ferritin all very common when vegetarian unless on supplements

Never supplement iron without getting tested first....iron is toxic in excess

Low B12 symptoms

b12deficiency.info/signs-an...

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Lizlife profile image
Lizlife in reply toSlowDragon

Erm not taking any other supplements and I don’t eat much dairy either. I’ve had low iron in the past too. Wonder if that’s why I feel dizzy, palpitations and nausea all the time lol 🤦‍♀️ Xx

Usually, doctors will LOWER your thyroid meds when your TSH is low because they interpret it to mean you are overmedicated. If your do indeed suffer from drug-induced hyperthyroidism (caused by overmedication) your TSH will be LOW, even suppressed, not high. A high TSH is a sign you are undermedicated (if already on meds) or hypothyroid (if not on meds).

To know which kind of hypoT you have, you´d need to have your thyroid antibodies and anti-thyroglobulin levels tested.

I take it you have not been treated with radioactive iodine or had thyroid cancer, but was diagnosed with hypothyroidism from the beginning?

As others have pointed out, ideally you´d need to have both FT4 and FT3 tested because it´s possible to have a low TSH, high in range FT4 and lowish FT3 levels indicative of a conversion problem leaving you hypothyroid as T3 is the truly active thyroid hormone.

Do you have recent labs to post here?

Lizlife profile image
Lizlife in reply to

I’m awaiting results but think it’s just TSH and T4 but not sure! When I came on the forum I couldn’t believe how little I know about the condition. I’m clueless!! Once I get the result, which I think will be tomorrow, I will post them. Yes I just got diagnosed with hypothyroidism after feeling so awful for so long. My level when they tested me was through the roof! I’d suffered from Clostridium Difficile a few years before and I think that may have triggered it but that’s just a guess 🤷🏼‍♀️

Lizlife profile image
Lizlife in reply toLizlife

On my last test they increased my medication because my tsh was to high? Is that right?

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