Should I accept dose reduction?

[Bearo]

My TSH dropped from 4.98 on diagnosis to below 1 as soon as I started Levo in 2020.

For the past two years it’s been 0.01-0.03.

It dropped that low when I went up to 100mcg in 2021.

I accepted I was over medicated from advice here ( FT4 24.9, FT3 6.5) and because I was losing weight and I reduced to 85mcg after a few months.

bloods came down nicely on 85mcg.

to FT4. 18.2, FT3. 5.1. But TSH didn’t move - 0.02 and I continued to lose weight for a while - now steady - and continued frequent bowel movements . Otherwise I felt fine. Symptoms have always been a bit vague with me.

When I was summoned for the annual blood test this year I felt my luck at keeping my prescription at 100 (even though I only take 85) was running out. I made the test appointment for six weeks ahead and decided to drop to 75 for the six weeks in an effort to raise my TSH. Even though it’s never been over 0.14 on 75mcg. I felt I had less energy on 75 but hey-ho, it would be worth it.

It didn’t work. My TSH (at 8.15am) was still 0.03. I got a text message saying my dose had been reduced from 100 to 75 and my new prescription had been sent to the pharmacy.

I wrote a letter to the GP saying I did not accept the dose reduction. Then I thought I’d better go along with it for another six weeks to prove to the GP that 75 is too low a dose for me - and also because I had no access to a higher prescription.

After another six weeks on 75 my TSH (at 9.20 am) was 0.02.

FT4 was 18 (11-22). So a slight change in range. No FT3.

This surprised me because FT4 was 18.2 (12-22) last summer on my dose of 85, with FT3 at 5.1. So 62% and 54.5%. I was content with that but thought my Frees would be lower this year on the lower dose of 75mcg.

So now I’m confused. I have a GP appointment for THE TALK on Thursday. I was going to say, “Look, my TSH hasn’t budged and it’s not going to. And my FT4 is only 62%? so I’m not overmedicated. I felt good on 100 “ (won’t say I only take 85).

But I could say “ok, my FT4 is still around 60% and hopefully my FT3 is still just above 50% so I can exist on 75mcg and, of course, I now weigh 56kg whereas I was about 66kg when I moved up to 100mcg in2021.”.

But I might try to negotiate 100 as 2x50 or 4x25 Wockhardt for a trial of split dosing, since this might raise my TSH.

If no go, I can negotiate 100/75 alternating which will give me the dose I was taking anyway.

By the by, on 85mcg my cholesterol had dropped to acceptable 4.29 and now, on 75 mcg it’s an unacceptable 5.3.

Not tested this year but My haemoglobin and MCH are always at the bottom of the range with RDW right at the top of the range so I feel I should push for an iron panel.

But why is TSH and FT4 the same on 75mcg as 85mcg?

And which dose is better - the higher one that I think I feel vaguely better on, or the lower dose cos less is better health-wise?

Or is it all so close together I should get over myself, stop mulling it over and accept whatever the GP suggests?

[greygoose]

Or is it all so close together I should get over myself, stop mulling it over and accept whatever the GP suggests?

Oh, definitely don't do that! He's not got much idea. He should not be dosing by the TSH! What is the point of testing the FT4 if he's not even going to look at it? He doesn't really understand how all this works, does he.

I would just point-blank put my foot down and say no, I'm not going to reduce my dose. And if he doesn't accept that, remind him that he is there to advise you, not to dictate to your - your body, your health, your life. And, if all else fails, tell him that if he insists on reducing your dose, you will buy levo on-line and give yourself the dose that you need.

If your cholesterol has gone up, that's a sure sign that your FT3 has dropped and you are now under-medicated.

And which dose is better - the higher one that I think I feel vaguely better on, or the lower dose cos less is better health-wise?

errrr.... Up to a point. But being under-medicated is not good for your health, either. Your body need thyroid hormones. You cannot live without it. And, you need the right dose for you for all you millions of cells to function correctly. But, I wouldn't expect a doctor to know that!

[SlowDragon Administrator]

You need to test vitamin D, folate, ferritin and B12

These need to be maintained at optimal levels too

weight loss is a consideration

Guidelines

56kg x 1.6mcg = 89.6mcg Levo per day

That’s 627mcg per week

75mcg 3 days and 100mcg 4 days per week

66kg x 1.6mcg = 105mcg Levo per day

These are just guidelines…..but you can see when weight was 66kg you didn’t appear to need the full 105mcg

So you might only need….approx 80mcg per day

Perhaps 75mcg 6 days and 100mcg one day

[SlowDragon Administrator]

This can be useful negotiating tool to get a bit more than 75mcg daily

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

[Bearo in reply to SlowDragon]

Thanks, Slow Dragon I hadn’t worked out the maths to that extent.

But I’m sure the GP will pick out “avoiding TSH below 0.1”

[SlowDragon Administrator in reply to Bearo]

How about this one

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

T4 therapy

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

Ask for referral to endocrinologist of your choice and meantime that you remain on dose levothyroxine that gives you least symptoms

[Bearo in reply to SlowDragon]

Yes, I will use that one

[DippyDame]

Bottom line!

FT3 followed by FT4 are the important results!

TSH is not a reliable marker the following links underline this fact!

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

*******

thyroidpatients.ca/2021/07/...

The myths that idolize TSH and denigrate FT3

Your medic's knowledge of thyroid function is poor, which is not uncommon.

For good thyroid health we need to be both correctly and adequately medicated and medics need to understand this!

Listen to your body it will soon tell you if something is wrong!