Taking thyroid meds every other day, is this healthy?

[DG82]

Hi, I have a question as I’m concerned about doses of thyroxine. Is it normal to be given 100mg to take every other day? The other days meaning zero medication?? Thanks

[greygoose]

Well, it's not really medication, is it, not in the normal sense of that word. It's thyroid hormone replacement, and T4 - thyroxine - is a storage hormone, so it's ok if you don't take it every day. It doesn't have an instant effect.

That said, I cannot imagine why your doctor would do that. Why not give you 50 mcg to take every day? There are 50 mcg pills. Or, you could cut the 100 mcg in half and take half every day.

[DG82 in reply to greygoose]

The dose was 50 everyday but my bloods came back still showing too high so this was my new dose. I questioned it and was told it was correct but now all side effects I had before diagnosis in December have returned.

[greygoose in reply to DG82]

Sorry, but that doesn't make any sense. You're still on the same dose. What was the test that was too high? Do you have a copy of your blood test, with the ranges? It we're talking about the TSH, here, and it was too high, you needed an increase in dose, not messing about with when you take it. Your doctor obviously doesn't know much about thyroid, does he.

[DG82 in reply to greygoose]

I don’t have the results to hand but when they first checked my thyroid was something like 100 and now after trying going from 25 to 50mcg it’s still high at 50something. The new dose made no sense to me so I questioned it and I’ve trusted that they knew what they were talking about but I feel awful again. Hot flushes, exhausted but can’t sleep, whole body ache and sore eyes... this was starting to get better but now I’m lost and back at square one. I was hoping on here I’d find some answers and from what you’re saying, I am definitely on the wrong dose.

[greygoose in reply to DG82]

With a TSH that high, you certainly are on the wrong dose. That's why your symptoms are all coming back.

I'm afraid that you can't just trust that doctors know what they're doing where thyroid is concerned. They know very little about it because they just don't spend much time studying it in med school. But, your doctor has taken this lack of knowledge one step further! He really has absolutely no idea what he's doing. Can you see someone else?

Oh, and TSH, by the way, is not really a measurement of your thyroid. It is a pituitary hormone: Thyroid Stimulating Hormone. When the pituitary senses that there's not enough thyroid hormone in the blood, it increases its output of TSH to stimulate the thyroid to make more. If your thyroid, for whatever reason, cannot respond, it just gets higher and higher. With a TSH of over 100, your actual thyroid hormones - T4 and T3 - must be very, very low. Even with a TSH of 50. So, not surprising you're suffering from a lot of symptoms.

[DG82 in reply to greygoose]

Im new to all this and found it hard to really get info from my dr. Thank you so much for your knowledge, I knew it was wrong but just needed someone with a bit of knowledge to confirm I’m not going mad. I’m going to make an emergency appointment tomorrow. Thanks again

[greygoose in reply to DG82]

Well, your doctor can't give you information he doesn't have. And, he obviously doesn't understand how it all works, himself.

But, no, you're not going mad. I can assure you of that. He should have increased your levo to 75 mcg every day, with a retest in six weeks time.

[DG82 in reply to greygoose]

I’ll make sure I let him know that this is the advice I’ve been given. Thank you

[greygoose in reply to DG82]

You're very welcome.

[meme in reply to DG82]

Ask the receptionist for a print out of your results. You are untitled to them. Post them here.

[Georgiek111 in reply to DG82]

Sounds like maybe he meant to put you up from 50 to 100 everyday but maybe made a mistake saying every other day.

[makemepainfree]

Don't know about that but I was on 200mg everyday now Dow to 150mg.everyday

[helvella Administrator Thyroid UK in reply to makemepainfree]

Alternating doses like that is common enough. (Though I would prefer 125 every day for myself.)

But zero to 100 and back day by day is a massive change. I do not believe there is any medical justification or science behind dosing like that.

[DG82 in reply to helvella]

You’d be right! I’ve just seen a different Dr who has apologised for the error!!! I’m now on 100mcg every single day!! So glad I came here for advice.

[helvella Administrator Thyroid UK in reply to DG82]

Phew!

But do also remember that is a doubling of dose. Some people find a large increase hard to take. If needed, you could consider alternating 50 and 100. Or 75 every day. Just to ease you across. (You might run out of tablets, or have to split them to achieve these doses. )

[SlowDragon Administrator in reply to DG82]

Standard practice to increase levothyroxine in 25mcg steps

Suggest you increase to 75mcg for 2-3 weeks before increase to 100mcg

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Always stick to same brand of levothyroxine

[makemepainfree in reply to DG82]

Glad you got sorted out

[SlowDragon Administrator]

In effect you are still taking 50mcg daily

Perhaps your doctor meant you should take 100mcg one day and 50mcg the next day ....that would give increase in dose to 75mcg every day

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Which brand of levothyroxine are you currently taking

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had thyroid antibodies tested yet

Ask GP to test vitamin levels (and thyroid antibodies if not been tested)

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Vitamin D NHS postal kit

vitamindtest.org.uk