Can someone help with results?: I’ve have an... - Thyroid UK

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Can someone help with results?

Catz_ie profile image
10 Replies

I’ve have an under active thyroid since 2018 & Feel like I’m getting no where. I’m on 150mg of Levothyroxine for a while now still don’t feel great. My doctor won’t up the dose so just wondering if I can get some advice off you lovely people on what I should do. Thanks in advance

18/09/2019

T3 - 3.8pmol/L - range 4.0 -7.0

T4- 21 pmol/L - range 10 - 25

TSH - 5.04 mU\L - range .55 - 4.78

04/12/2019

T3 - 3.8pmol/L - range 4.0 -7.0

T4- 20 pmol/L - range 10 - 25

TSH - 5.60 mU\L - range .55 - 4.78

B12 - 209ng/l - range 200 - 700

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Catz_ie profile image
Catz_ie
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10 Replies
SlowDragon profile image
SlowDragonAdministrator

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 other vitamin levels

B12 is far too low

Likely other vitamins are too

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)

Is this how you do your tests?

Looking at high Ft4...suspect not

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_...

fuchsia-pink profile image
fuchsia-pink

You must be feeling awful!

Your TSH is over-range (and much higher than one would expect given your levo dose) and your T3 is below range - suggesting you are a "poor converter". I don't know if you have had other nutrients tested - but your B12 is very low too.

You badly (in my opinion) need more T3 in your system - is your doctor receptive to referring you to a consultant endo to talk about lio? The fact that your results are so poor despite quite a high dose of levo would seem to make you a strong contender ...

Catz_ie profile image
Catz_ie in reply to fuchsia-pink

Thanks for your help. I feel like S**t!! Yeah all was tested in December and was given B12 injection. It made a slight difference but nothing to write home about. When I 1st got diagnosed my T3 etc were the highest my doctor had ever seen and that was bk in 2018 nearly 2 yrs on & I still feel the same. She has written to endo but hasn’t gotten a reply & I don’t think she has even chased it up, this is going on since sept last year. I just don’t know what to do, I’m hoping that I get some really good advice & I can go back to her with some options of things that can help me.

fuchsia-pink profile image
fuchsia-pink in reply to Catz_ie

Chase for that appointment! You can also get a list of T3-friendly endos from Dionne at Thyroid UK if that helps :)

greygoose profile image
greygoose

What is your doctor's excuse for not raising your dose? Your TSH is over-range. Your FT3 is under-range. How can she pretend that that is 'normal'? Ask her what the point of the ranges is if she's going to blatantly ignore them.

Catz_ie profile image
Catz_ie in reply to greygoose

I don’t think she fully understands my results, hence why I’m here looking for help. I have emailed thyroid UK for list of endo’s, if I can afford it I will go private.

SlowDragon profile image
SlowDragonAdministrator in reply to Catz_ie

First step BEFORE seeing any consultant is to get FULL Thyroid and vitamin testing privately

Make sure to get blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

Presumably you have hashimoto’s?

Likely you have very low vitamin D, folate ferritin

B12 injections should be regular

greygoose profile image
greygoose in reply to Catz_ie

She may not fully understand, very few doctors do, but even so, under-range can never be normal. Ditto over-range. And if she doesn't know she ought to ask. Her attitude is inexcusable. Hope you find someone with a little more knowledge than that. :)

Longinthetooth profile image
Longinthetooth

Hi

I've been on levothyroxine for about the same time as you.

I had to plead to be put on it, so was started on 25mcg. At last, I felt better but had side effects (on Wockhardt). Was changed to Eltroxin & felt better but had to ask each time for a higher dose. Eventually, I was put onto 150mcg. When I had a blood test in December 2019 the doc said I was on too high a dose. I asked her not to reduce it but I realised that my body was racing & I woke up each morning wet through with sweat so I reduced it at the beginning of January to 125mcg. My body has now stopped racing & the sweats are a lot less severe.

It's difficult getting the correct dose & brand but persevere.

One of the lovely ladies on this site guided me on the right path to whom I'm eternally grateful.

My mother who is 86, has been on 50mcg for years & is fine apart from old age. She takes her tablet with a cup of tea which horrifies me as I know that you have to take it at least an hour before caffeine.

Hope this hasn't bored you.

All the best. Don't give up hope.

GKeith profile image
GKeith

Can you get some T3? You have low T3 and high T4 so it probably ain't converting, get some T3 and try it with the T4. You may have to lower the T4 as you take the T3 sooner or later; you need to do it yourself if your GP won't or you'll never get it (right).

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