can you refuse to lower thyroxine dose?

[Tjqui00]

My tsh has been supremes for as long as I can remember. I’ve been gradually reducing my dose over the years and the last 6 months or more, I’ve been taking 100, 100, then 75 etc. I was on 100 every day but ft4 and ft3 were slightly above range. Recent blood test after reduction shows TSH is still suppressed, but ft4 is now 16.5 when range goes up to 18 and ft4 has dropped from 6,6 to 5 (range 3.8-6).

When the result first came back, doctor said to continue on same dose and retest in 6 months. After I spoke to the pharmacy technician and she was going to ask if I could go back up to 100, doctor has completely changed her mind and wants me down to 75 every day based on my TSH result.

Can you refuse to do what they say? Hope they don’t refuse to prescribe 100 mcg. I’m now waiting for a doctor to call, whenever they have time which could be days.

[Tjqui00]

suppressed I meant

[Tina_Maria]

How do you feel with your dose reduction? Do you notice any difference? It would obviously good if you can tolerate a slightly lower dose (where T4 is not on top of the range), as we should aim for the lowest possible dose that keeps us symptom free. But obviously important thing is how you feel with it.

If you have had your TSH low for a long time, it is unlikely that it will come up to a level that your GP would be happy with, hence I would go by how you feel and what your levels of T4 and T3 are.

I think you can refuse a dose reduction, not sure if the GP has to honour it. I would perhaps say that you realise that your TSH is suppressed (as this is what they are so bent out of shape about), but this is the only way you feel well and they should respect this - after all treatment should be in consultation with the patient, not overriding their decisions or wellbeing!

[Tjqui00 in reply to Tina_Maria]

My ft3 is only mid range though so if I lower the dose, to bring t4 down more, then ft3 will go to low end of range.

I’ve printed something out from thyroid uk which says patients feel better when t4 and t3 are higher in range and even above range and sometimes this means TSH is suppressed, but it isn’t harmful if t3 and t4 are in range. I have to ring at 8 am to get a doctor’s appointment tomorrow to discuss it again, so was going to read that out to them,

I don’t feel like I’m taking too much.

[Tina_Maria in reply to Tjqui00]

I understand, if you lower the T4 too much, your T3 will drop too low.

You are correct, most people feel better if their T4 and T3 are at least 60-70% through the range. How do you feel at present with your T3 mid range? Do you notice any difference? If this is not working for you, then obviously you need a higher dose and you should defend this to your GP.

As a guide a 'normal' replacement dose is 1.6 mcg per kg of body weight (also stated in the NICE guidelines), some people need more and some people can tolerate less, but this is highly individual.

Which dose do you feel best on?

[Tjqui00]

I think I felt better when I was on 100. They aren’t going to let me increase it back to that though. I prefer my t3 to be higher in range. This is the lowest it’s ever been.

My body weight suggests a bit over 80 or 83, so not as low as 75 which they want me on.

[Bearo]

If GP insists on a dose reduction and can give a good reason for it (other than raising a very low TSH which refuses to rise whatever the dose) you could try refusing the reduction or you could opt to trial alternate day dosing…so many days on 100 and so many days on 75. From 100 to 75 would be too big a drop for many.

[Tjqui00 in reply to Bearo]

I’m already doing that. I’m taking 100 for 2 days, then 75 on 3rd day, then back to 100 etc.

[Tjqui00 in reply to Bearo]

They say it can cause heart problems and osteoporosis, with a TSH suppressed and for so long,

[Bearo]

These are notes I’ve copied from this forum:

TSH has nothing to do with hearts and bones. That's a misunderstanding on the part of doctors because they do not know the difference between

- a suppressed TSH caused by very very high FT3, long-term, in hyperthyroidism/Graves',

- and a suppressed TSH caused by taking exogenous thyroid hormone in hypothyroidism, where the feed-back link is damaged, anyway.

In the former case, the risk to hearts and bones is due to the high FT3, NOT the low TSH.

Low T3 is far, far worse for your bones. Low nutrients are bad for your bones.

They are taught that having a suppressed TSH is bad for the heart and bones, and this is why a suppressed TSH scares them. Research has found this not to be true, but having a very high TSH is bad for the heart and bones.

Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy

academic.oup.com/jcem/artic...

[Bearo]

I’m not saying a below range TSH is ideal, but many of us have a less than functional feed back/feed forward which means our TSH is never going to rise. When my dose was dropped from 100 to 75 my TSH moved from 0.01 to 0.02.

[serenfach]

You could ask why they are hell bent on raising your TSH, as taking any thyroid drug will negate any numbers. My TSH is 0.02 and has been for years, and my bones are above average according to my GP. Then ask if they have read the research showing that a low TSH is not a problem.

thyroidpatients.ca/2021/07/...

and helvella.blogspot.com/p/tat... has lots of wonderful information.

Good luck!