Endo advice: Hi there All, I’ve been diagnosed as... - Thyroid UK

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Endo advice

Catfink profile image
6 Replies

Hi there All,

I’ve been diagnosed as hypo, but levo makes me feel completely rotten. Terrible aches, robot mood, but normal bloods. NDT is better, but not perfect, as i get irregular heartbeat with it. I have an endo appointment on the 2nd jan, are there any tests i should be requesting or special questions i should be asking? I had the DIO2 test and it was negative. Thanks in advance x

6 Replies
greygoose profile image

Could be that you don't convert very well, in which case NDT would contain too much T4 and not enough T3. Could be that taking levo plus T3 would be better, because it's more flexible to dose. But, you could perhaps add some T3 to your NDT. In any case, the most important thing to ask for is for the FT3 to be tested. :)

Catfink profile image
Catfink in reply to greygoose

Oh brilliant, thankyou! I’ll ask for that then

greygoose profile image
greygoose in reply to Catfink

You're welcome. :)

SlowDragon profile image

Presumably you have Hashimoto's as your hypothyroidism seems to have started after quitting smoking ?

Are you on strictly gluten free diet or tried it?

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

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)

If also on T3, or NDT make sure to take last dose exactly 12 hours prior to test

Ask Endo to test vitamins, both TPO and TG thyroid and coeliac blood test. Also ultrasound scan of thyroid

Your unlikely to get all tested

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


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


Link about antibodies and Hashimoto's



List of hypothyroid symptoms


Catfink profile image
Catfink in reply to SlowDragon

This is all brilliant advice, thank you! I did have an antibody test at the beginning, but it was negative, though i don’t know which test it was. So i was under the impression it’s not hashimotos? My ferritin & vit d are both very low and i was told to supplement both, which i do. I had glandular fever really badly when i was 18, and i’d put that down as the cause. I just recently had all the coeliac tests, including endoscopy (which was no fun) and that all came back negative. My b12 was in range at the last check, but i’m not sure about folate. There’s alot to look into! Thanks again :)

SlowDragon profile image
SlowDragonAdministrator in reply to Catfink

Links about Glandular fever and subsequent Hashimoto's as result





You can have Hashimoto's and never have raised antibodies

An ultrasound scan of thyroid may be helpful

Despite endoscopy and negative coeliac testing, would strongly recommend trying strictly gluten free diet for 3-6 months. If you find it helps stick on it. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Hashimoto's and smoking or quitting smoking (common for many of us)


Essential to get all four vitamins optimal

Vitamin D Aiming to improve to at least 80nmol and around 100nmol may be better . Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Local CCG guidelines


Government recommends everyone supplement October to April


Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D






Do NOT supplement any vitamin K if you take any blood thinning medication including aspirin


Vitamin C and bones


Low Ferritin, eating liver or liver pate once a week should help improve levels. Or other iron rich foods plus vitamin C or orange juice alongside to improve absorption

Presumably your GP has also prescribed ferrous fumerate supplements

If ferritin was extremely low you should be given an iron infusion

How low was vitamin D?

What about B12 and folate? Frequently low too

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