I am nearly 63 and was diagnosed with hashimotos in 1996.
I've been on levothyroxine ever since and recently had to beg my GP to up the dose as I've awful symptoms. Despite me being on the cusp of being undertreated (TSH 4) they only put it up because I was distraught.
They refuse to test for anything other than TSH so would people think it's worth me looking into me taking a small supplant of T3 and if so where from?
How much are private blood tests and who is recommended?
I'm currently taking 100 mcgs of meds and live in leeds (west Yorkshire) UK. Thank you.
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Lindylops
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I’m sure that SlowDragon will respond with an excellent message that helps people in your situation by quoting the guidance on TSH levels and giving private testing advice.
You really need to lean heavily on your GP to have a full range of thyroid tests and be allowed to continue to increase. Or demand he refers you to an endo as you still have symptoms (you may get a good one, though some are pants), or see a sympathetic private endo - recommended by someone on here - or you need to find a better GP.
Your GP is going to keep you ill. They don’t understand how to treat you properly. Read all the info on this site - many others have posted who have found themselves in the same situation as you. This site will help you to understand your condition and how it should be treated to give you the confidence to challenge poor treatment with facts and also to manage the condition yourself if you have to.
Private test info in this link and read all the info on thyroid UK. Your GP is keeping you ill so you need to learn as much as you can thyroiduk.org/tuk/testing/p...
TSH of 4 is far too high for someone on Levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps until TSH is between 0.4 -1.5 to be adequately treated
Bloods should be retested 6-8 weeks after each dose increase
If vitamins and antibodies have not been tested, request these are included
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 or if you have been under medicated for some time
Recommended on here that 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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or 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 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 .
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
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Also page 13, Box 1, column 4 - lists vitamins that should be tested
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .......... This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L .......... Likely under Replacement
and from
Dr Anthony Toft, leading endocrinologist and past president of the British Thyroid Association, who wrote in Pulse magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor.
As you have Hashi's, this often brings about low nutrient levels or deficiencies, so it's essential to test them. In your position I would get a full thyroid/vitamin panel from one of our recommended labs. They come as fingerprick tests or venous blood draw at extra cost:
Post results when you have them (include reference ranges) and members will help.
As you have Hashi's, are you strictly gluten free?
You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
You won't know if you need T3 until Levothyroxine is high enough to bring TSH is down under one, vitamin levels optimal and, if you have Hashimoto's, tried strictly gluten free diet
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Awful symptoms!
