Thank you

[Omadoll]

Thank you everyone. I now need to know why it doesn't matter that my TSH is 0.010 and what can I say in my defense when I refuse to take less thyroxine 🤔

[SeasideSusie Remembering]

Omadoll

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.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states 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)."

Although that statement mentions total T3, free T3 would actually be a better measure and that's the test that's usually done.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

[SlowDragon Administrator]

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

Your FT4 is on low side. Obviously need FT3 tested, as you feel hypo it's likely too low

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

ask GP to test vitamin levels. Often these are far too low.

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.

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 .

Tick of your hypothyroid symptoms on this list

thyroiduk.org.uk/tuk/about_...

Ask for coeliac blood test if you have Hashimoto's and are still eating gluten

[Omadoll in reply to SlowDragon]

Thank you. I did fast nor took thyroxine before blood tests. Doctor unwilling to test all the above, expense nor needed,,, quote, unquote! Will look at all links sent to me, thanks again.

[SlowDragon Administrator in reply to Omadoll]

Then like thousands on here you will be forced to test privately

Come back with new post once you have results and ranges

Refuse to change dose. Get full private testing including vitamins

If vitamins are low, which is pretty likely then improving these is first step

[Hashihouseman]

Contrary to the guru dr toft the appropriate dose of levothyroxine is that in which you feel well or the least unwell due to the thyroid condition. This idea that such a tiny and frankly unphysiologically low ‘euthyroid’ range is the nirvana for replacement therapy should be viewed in the light of available data on the range of actually healthy individuals thyroid profiles where 1-2 is more often recorded than less than 0.5 let alone 0.05. Take lots of blood tests record symptoms go with the flow make small adjustments up and down, note their effects, if you feel worse you were going too far in the same direction and could go the other way, up or down but seek to reduce the changes to steady state, that’s how you titrate replacement doses. And it may take a physiologically similar proportion of T3:T4, but that’s a whole other story.......

[fiftyone]

please note, I am not an expert, just a patient, but my TSH is around 0.005, my T4 is well out of range, (I feel fine, nothing hyper at all) and I had a terrible time trying to tell the doctors not to reduce my levo (175 mcg daily).I was guided by the more knowledge members and I found the extract by Dr. Toft (provided below by Seaside Susie) invaluable and especially advice that FT3 needed to be tested, as well as T4. When my GP tested my T3, (at my request) I was well within range and this, too, helped sway him. However, I had to change my GP in order to get to this stage. Even within the same practice they have different views. This particular GP, though hesitant, talked about respecting the rights of the patient. His main concern about my TSH was that it would lead to heart problems and it is, as a lay person, very difficult disputing research and superior knowledge, but you know how you feel. However, interaction of drugs needs to be carefully monitored. I was prescribed pseudoephedrine in the Spring (for sinus problems) and it sent me into atrial fibrillation. (okay now). I did reduce my levo for a while, to appease my GP and see how I felt, but had to revert back fairly soon afterwards. Luckily, for some reason, I have built up a spare supply of levo, so as soon as I knew the reduced dose wasn't enough, I upped it myself. This actually helped because the responsibility was taken from my GP, and he could then see for himself that no harm had been done. It is desparately difficult if you have no spare supply and you rely enitrely on the 'goodwill' of some obstinate GP. Another strong argument is cost. If you feel unwell as a result of lower levo, then the GP will have to do various other tests to find out why you are unwell. I pointed this out, saying it was a complete waste of NHS money doing various tests, when one small cheap levo tablet would solve all the problems. He also suggested I see an endo. but again, why spend NHS money when it is not warranted. Only you know how you feel on different doses, I might add. Should add I've been taking my current does for 15 years (with Spring interruptions) and keep entirely well though my TSH is crazy and my T4 often well out of range.