Should I see an endo?: I've been on 50mcg of Levo... - Thyroid UK

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Should I see an endo?

Loukcol
Loukcol

I've been on 50mcg of Levo for just over a year. I'm not feeling great, still fall asleep sitting up, cold hands and feet... but I've just been putting up with it. Now two of my children have been diagnosed with auto-immune diseases. The GP surgery that we see has not put this all together yet. I saw a functional medicine GP (privately) with my teenage son who has lost all of his hair with alopecia. She said that she's pretty positive that I have Hashimoto's. I'm thinking that I need to go back to the GP and get a referral for an endo.

11 Replies
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SlowDragon
SlowDragonAdministrator

Well 50mcg is only a starter dose. Bloods should be retested after 6-8 weeks and dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Most people eventually need somewhere between 100mcg and 200mcg Levothyroxine

You need to know if you have Hashimoto's,also called autoimmune thyroid disease, diagnosed by high thyroid antibodies. Ask GP to test, plus Vitamin D, folate, ferritin and B12 too. These are often too low, especially when under medicated

Low vitamins tend to keep TSH low then GP doesn't increase dose of Levothyroxine

Add your most recent blood test results and ranges here if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodi also very important to test vitamin D, folate, ferritin and B12

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...

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. When on Levothyroxine, don't take 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)

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 .

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

Loukcol
Loukcol
in reply to SlowDragon

Wow! Thanks for this. I had blood done a year later so in April 2018 it was Serum Free T4, 11.8 pmol/L and

Serum TSH Level 2.34 mu/L

I've just booked another appointment with GP (in one month's time...). I have private medical insurance so wondering how I can use this to bypass the NHS.

SlowDragon
SlowDragonAdministrator
in reply to Loukcol

A TSH over 2 is far too high when on Levothyroxine.

See your GP and ask for 25mcg dose increase in Levothyroxine and also for vitamin D, folate, ferritin and B12 to be tested

Full Thyroid bloods should be retested in 8 weeks - TSH, FT3 and FT4

All thyroid tests should 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)

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...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

HiddenThis reply has been deleted
Loukcol
Loukcol
in reply to Hidden

Thanks. Is this something that the NHS will do, or am I having to go private. I'm English, lived in the States for 10 years, now I find the medical system here so painful.

HiddenThis reply has been deleted
Loukcol
Loukcol
in reply to Hidden

Thanks! I'm feeling like crap, I'm going to try and use my health insurance to get sorted...

SlowDragon
SlowDragonAdministrator
in reply to Loukcol

Ask GP to increase dose of Levothyroxine first by 25mcg.

Then get full private testing after 8 weeks on increased dose via Medichecks or Blue Horizon

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodi also very important to test vitamin D, folate, ferritin and B12

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

HiddenThis reply has been deleted
Loukcol
Loukcol
in reply to Hidden

Cheshire, so can get to Manchester easily.

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