Fed up taking Levothyroxine

[MissDemeanour191]

I'm tearing my hair out...not good with thyroid/menopause! Seem to alternate between hypo/hyper thyroid. My TSH went right down to 0.03. So GP said reduce dose to 125mcg. I stopped taking it and took Ashwaghanda, and vits B12, D3, and selenium, and....TSH went up to 36!! Feel so frustrated. Suffer with fluid retention, need to pee a lot during day & night. Any advice?

[greygoose]

If your doctor is dosing by the TSH alone, then that is what happens. And it never seems to occur to them that they are causing it!

A TSH of 0.03 does not mean that you are hyper. In fact, if you have been diagnosed hypo and are taking thyroid hormone replacement, you cannot become hyper. It's a physical impossibility. You could be over-medicated, but a TSH alone will not tell you that. You at least need an FT4 tested - and, ideally, an FT3. If the FT3 is in-range, then you are not over-medicated. But, doctors know next to nothing about thyroid and how to treat it. Which is why you have to learn, yourself.

Lesson n° 1 is that you cannot replace a thyroid hormone with herbs, vitamins and minerals. Hardly surprising that your TSH went up to 36! Did you even get your vits D and B12 tested before taking them? You should never take them without testing first. For one thing, you cannot know how much to take - or if you even need them. On the other hand, you could have Pernicious Anemia, and taking B12 will mask it. And, it's possible to over-dose on vit D, which will become toxic. Ashwagandha could have reduced your cortisol, which won't help at all.

So, you need to read as much as you can, and learn about your disease. You need to get full labs done - probably privately, if you can:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12 (although you will have to be off B12 for 5 months before testing or you will skew the results)

folate

ferritin

Then, you can start again. Is there another doctor that you can see, that might be a bit more clued up? Because the one you're seeing now is just going to keep you sick because he doesn't know what he's doing. There are some doctors that understand a bit better than that.

[MaisieGray]

What made you interpret your Dr's instruction to reduce your dose of thyroid hormone as stop it altogether and replace it with a herb? It's no surprise that your TSH rose as it did, but it demonstrates to you that you are hypothyroid and need to make up the deficit in endogenous thyroid hormones with exogenous thyroid hormones and not with an adaptogen. You've not said whether or not you have restarted your Levo, but if not, need to do so asap; although whether at 125 mcg or your previous dose I can't say as you've not mentioned what that was or how long ago it was when you stopped. Once you've been taking them for 4-6 weeks, then have your bloods tested again, privately if possible, and as comprehensively as you can afford, so that you have a full picture of what's going on rather than just a TSH level.

[SlowDragon Administrator]

Just testing TSH and FT4 is completely inadequate

Getting full private testing of thyroid and vitamins after 6-8 weeks on CONSTANT unchanging dose of Levothyroxine

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

Low vitamin levels are EXTREMELY common and can seriously mess with thyroid

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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 .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

You can't replace thyroid hormones with vitamins. You need BOTH

you were very lucky not to be extremely unwell stopping Levothyroxine