Frustrated, what do I do next?: I had my 201... - Thyroid UK

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Frustrated, what do I do next?

LawsTra profile image
4 Replies

I had my 2017 annual blood test and my T4 was 13 and T3 was 3.9. The doctor increased my dosage from 100mg to 150mg and retested me 6 weeks later and my T4 went up to 25 and T3 went up to 5.8 and everything was fine for 6 months. Then is started to feel worse.

I have just gone back to doctor from my 2018 annual blood test and my T4 has gone down to 10 and T3 down to 3.4. This is a big drop in levels, but my doctor said there is nothing to worry about, they will just increase my dosage AGAIN and I am now on 175 mg.

Does anyone else have this? I'm frustrated and don't know what I should do next.

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LawsTra profile image
LawsTra
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4 Replies
SlowDragon profile image
SlowDragonAdministrator

How do you feel?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies plus vitamins

Ask GP to test antibodies if never been tested, plus vitamins

Private tests are available

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 autoimmune thyroid disease (Hashimoto's)

With Hashimoto's low vitamin levels are extremely common. You may need to supplement to improve Thyroid, but important to test first

LawsTra profile image
LawsTra in reply to SlowDragon

Thanks SlowDragon, I tried to get full panel but they said I didn't need it. Have considered using private medical insurance to get tests done.

shaws profile image
shawsAdministrator in reply to LawsTra

We have two private labs which will do all the necessary tests and I will give you a link.

They do postal pin-prick tests and if you decide to do this, make sure you are well-hydrated a couple of days before and that arms are warm.

Blue Horizon and Medichecks are the labs.

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

SlowDragon profile image
SlowDragonAdministrator in reply to LawsTra

Par for the course

If you don't feel that your thyroid issue is fully and correctly treated, then getting full testing is first step

Come back here with the results on a new post. Members can advise if you have any vitamin deficiencies that need treatment or if have conversion issue or just inadequate dose

Low vitamins are extremely common and must be sorted to help thyroid hormones

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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