Help please

[Sopholoulou]

Hello,

I was diagnosed with an overactive thyroid, graves disease and thyroid eye disease around 5 years ago, I had a total thyroidectomy back in August 2017 which has now led me to be under active although I still have the graves and eye disease, My thyroid levels are being really resistant and are currently at a 58 when in fact should be between 0.2 and 0.6 I currently take 2000mcg a week of levothyroxine and this has not helped me at all, Currently I am on sick from work and cannot seem to function at all. Please can anyone help!?

[greygoose]

Sorry, but we really need a bit more detail...

My thyroid levels are being really resistant and are currently at a 58

Which level is that? TSH? If so, my first question is: how do you take your levo? Do you take it on an empty stomach and wait at least an hour to eat and drink anything other than water? Do you take any other medication or supplements at the same time?

Is TSH all your doctor tests? If so, that is completely inadequate. TSH is not that reliable, and to get a truer idea of your thyroid status, you need your FT4 and FT3 tested, too. If he has tested them, can you post the results and ranges, please?

TSH is not a thyroid hormone, so you can't really call it your 'thyroid level'. It is a pituitary hormone which stimulates the thyroid to make more hormone. The higher it is, the more hypo you are.

currently take 2000mcg a week of levothyroxine and this has not helped me at all

Do you really mean 2000? Or is that a typo? That would be an awful lot of levo!

[Sopholoulou in reply to greygoose]

Thank you for the response, My TSH is 58 yes.. It wasn’t a typo when I said I take 2000mcg a week, I take my medication on an empty stomach and wait an hour like you have rightly said.

[shaws Administrator in reply to Sopholoulou]

If you take such a large dose of thyroid hormones, I'd think you have a condition called 'Thyroid Hormone Resistance'. One of our Advisers (deceased) was an expert on Resistance which he stated was relieved by high dose of T3. Levothyroxine is also called T4 and is the inactive hormone - it has to convert to T3.

Dr Lowe stated that those with Thyroid Hormone Resistance can only recover with high doses of T3. He himself took 150mcg T3 daily but if you're in the UK it has been removed from being prescribed.

Unfortunately Dr Lowe died through an accident and his website was removed. I've a few of his articles and go down the page on the following link to read his comments which I posted :

"healthunlocked.com/thyroidu...

[greygoose in reply to Sopholoulou]

OK, my mistake, sorry. But, do you take 2000 mcg all in one go once a week?

[SlowDragon Administrator]

That's a very odd amount of Levothyroxine.

How much do you take per day?

Do you Always take Levo on empty stomach and then nothing apart from water for at least an hour after. ?

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime. Have you tried this?

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Do you always get same brand of Levothyroxine?

Have you had vitamin D, folate, ferritin and B12 tested?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

ESSENTIAL to test FT3 and FT4

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised EVEN AFTER THYROIDECTOMY

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

[shaws Administrator]

Sopholoulou I feel really sorry for you, due to your thyroid gland being removed altogether and being on levothyroxine alone. I have my thyroid gland and couldn't improve on levothyroxine but am aware that many appear to do fine on it.

I think it would be kind of the doctor or endocrinologist to trial a combination of T4/T3 with you. A recommendation is 3:1 or 4:1 (T4/T3).

I doubt your doctor will test the following and being too unwell to work is also a problem for you. i.e. a Full Thyroid Test is - TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

I couldn't get well on levo alone and I have my thyroid gland. I tried several different methods and now take T3 alone which has restored my health.

If you're in the UK, we used to get T3 prescribed but due to the pharma companies increasing the cost beyond reason it was stopped. It was a great opportunity for the 'powers that be' to miss as they don't seem to realise that levothyroxine (T4) doesn't suit everyone.

There is also the original thyroid hormone replacement, called NDT (natural dessicated thyroid hormones) prescribed since 1892 but, again, the 'powers that be' decided that it shouldn't be prescribed and actually made False Statements about it to enable it to be withdrawn. NDT has been in use since 1892 without blood tests when only our clinical symptoms were taken into consideration and dose was slowly increased until we felt well. Oh! for those days when ALL doctors gave us a 'trial' of NDT according to our symptoms alone. Especially if someone has their thyroid gland removed altogether.

Keep in mind too, that we're all different and what suits one doesn't always suit another.