I FEEL GREAT...but

[fiftyone]

I'm on 175 mcg daily of thyroxine. Have been for years. But my doctor wants to cut dose right down to 125mcg cos my T4 is high. But I am not hyper. Feel fine, no symptoms. I will be ill at a lower dose. Really stressing me out.

Advice anyone?

[bantam12]

What are your results ? If you can post them with the ranges we can advise, T3 is actually the important one so hopefully that was tested as well.

[fiftyone in reply to bantam12]

They didn't do my T3 this time, even though I requested. T4 was 22.00 and TSH was 0.005. Usually, in the past, my T3 has always been within range, eg. On April 18, my T4 was 18.4 (just above the range) but my T3 was 5.6 (within range).

I have taken 175 mcg for about 15 years. My T4 has always been highish, my T3 within range. However, my T4 has never been this high before. I am not sure whether the lab has changed their methods this time as they have reduced the T4 range, down to 14 tops when was previously 18 and they have reported my TSH as 0.005 when previously it was always 0.01. My GP would say to me that this level was undetectable.

I feel no different than I did six months or six years ago. Why aren't I ill or hyper if I my level of T4 is too high? At my consultation this morning, I asked my GP if maybe I wasn't converting properly to T3 and if this would account for the situation, but he never answered, was annoyed with me and said it wasn't relevant.

[bantam12 in reply to fiftyone]

I think you need to get your T3 tested to see if that is still in range, if it is and you feel well then possibly ok to stay as you are although T4 is quite over the top. You could do a finger prick test from Medichecks to see where those results come in.

[fiftyone in reply to bantam12]

I don't understand why my T4 is so high when I am only on the same thyroxine dose as I have been for about 15 years, and its always fluctuated between about 15-19

[SeasideSusie Remembering]

fiftyone

Please post your results, with reference ranges, for members to comment. Ideally you need

TSH

FT4

FT3

Thyroid antibodies

and useful if already done:

Vitamins and minerals - Vit D, B12, Folate, Ferritin

[SlowDragon Administrator]

Just testing TSH and FT4 is completely inadequate as you are well aware

Refuse to reduce your dose, unless they can prove your FT3 is too high

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

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise alternatively we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Suggest to your GP you will only reduce Levo if they offer Liothyronine in addition. Otherwise you will stay on your current dose (assuming FT3 is still in range and vitamins optimal)

[fiftyone in reply to SlowDragon]

thank you. that is very helpful. I will print it out and show my doctor as I have made another appt with a different doctor to discuss this. The problem is I rely on the doctor for a prescription. If he decides I can't have my usual dose, he will not prescribe it. Then what?

[SlowDragon Administrator in reply to fiftyone]

Self medicate to top your Levo dose up

[bantam12 in reply to fiftyone]

Even if you did have to cave in and reduce your dose a drop from 175 to 125 is to much.

My T4 is over range and TSH well below, I've had a "discussion" with a random GP at my surgery, she was blowing a gasket over it but as my T3 is well in range she didn't win the battle, I've since seen my usual GP and she is fine with it, so hopefully seeing a different doc will help, do ask again for T3 to be tested.

[fiftyone in reply to bantam12]

thank you. I feel more confident now, seeing responses to my problem. The GP got really annoyed with me, but I know how I feel. Appreciate your input.

[shaws Administrator in reply to fiftyone]

If someone has had thyroid cancer, they are permitted to have a suppressed TSH and they come to know harm.

It is the worst thing they can do is to reduce and also by so much just to fit your results into a range when you feel well. It is ridiculous.

[Aurealis]

Say ‘no’ and be really annoyed with GP for suggesting a change of dose for someone who is well based on a flawed test. If necessary, ask for a retest in six weeks. Make sure you have the test early and before your meds (don’t take any in the 24 hours before your test). If necessary, fib! Oops you took extra by mistake on the day before the test. Perhaps best of three tests after another one after another six weeks. Whatever, do not change dose! Thyroid hormones are like juggernoughts, you can’t swap and change direction on a whim, you will become very poorly. Your whole pituitary-hypothalamic-thyroid axis is adapted to your current dose, it could take years to get back to where you are now health wise if dose is changed. Good luck

[fiftyone in reply to Aurealis]

thank you for that advice. I do have a good supply of extra tablets, for some reason, so can carry on for sometime. Hopefully I'd get it sorted before then,

[shaws Administrator]

If you feel fine refuse. Doctor can cause you to be hypo again. Refuse to reduce dose. Tell him you have absolutely no 'hyper' sensations and are well.

Did you have the blood test 24 hours after the last dose and at the earliest a.m test.?

[fiftyone]

I didn't take any thyroxine morning of the test, which I think was AM.

[Aurealis in reply to fiftyone]

Tests are never infallible, someone may have made a mistake. There are also arguments that tests are only measuring T4 and TSH levels in your blood, but what makes you well is T3 in your cells. There is no test for that. As my old GP used to say ‘if it’s not broke’ (that is, you feel well) ‘don’t fix it’

[HLAB35]

Any chance that you're taking biotin, either alone or in a B-Complex? Biotin can elevate Free T4 in blood tests.

endocrinenews.endocrine.org...

[NickP1]

Ask to have the T4 and T3 retested. Stay as you are until then. If results still over you could drop just a small amount, to try. definitely not 50 in one go.