Hypothyroidism Advice: Hello In September I was... - Thyroid UK

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Hypothyroidism Advice

Whitney2017 profile image
2 Replies

Hello

In September I was on 50 Levothyroxine, my TSH was 9.2 {0.4 ‑ 4.0 mIU/L}

My TPO was 1,300 {<30}

In November I was on 75 Levothyroxine, my TSH was 8.9. TPO not retested.

The GP will not test any vitamins etc - waiting on endo appointment on 30th Jan.

I feel like I am in limbo land. I cannot work due to fatigue, muscle weakness and chronic infections. I have been off work now 6 weeks.

I feel like there is such a long way to go, not only waiting on endo but also in getting my TSH and TPO down. My friends tell me to try and relax and allow my body time but it is really getting me down.

Is the rate my TSH is dropping the expected rate? X

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Whitney2017 profile image
Whitney2017
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greygoose profile image
greygoose

Friends can say the stupidest things! It's obvious that they know nothing about thyroid. You aren't taking a treatment, when you're taking levo, it isn't going to cure anything. It will bring your TSH down, in time, if you take enough of it. But, it isn't going to lower your TPO antibodies.

I fail to see why your GP referred you to an endo, and doesn't handle this himself. It's very unlikely that the endo is going to know much about it. Most of them are diabetes specialist who know little about the thyroid. Your GP should have retested you six weeks after putting you on 75 mcg, and increased to 100 mcg. And continued like that until your symptoms were gone, and the TSH 1 or under. And, he could very well have tested your nutrients himself - after all, he tested your antibodies, so he's not a complete idiot.

How much has he told you about antibodies? Did he tell you what they signfy? That you have autoimmune thyroiditis - aka Hashi's - and that your immune system is attacking your thyroid and slowly destroying it, meaning that the condition is going to get worse, not better. And that you will continue to need increases in your dose as more of the gland is destroyed. There is no cure for Hashi's, but you can try lowering your antibodies by adopting a 100% gluten-free diet, and taking selenium. However, the best thing to slow down the destruction would be to keep your TSH suppressed - the less gland activity there is, the less immune system activity.

You do need time for things to improve on levo, of course. You cannot increase dose any faster than 25 mcg every six weeks. But you do need those increases in order to improve.

There is so much more that could be said, about nutrients, etc. But it is also going to take you time to assimilate all the information. You need to keep reading on here, other people's posts and the replies to them, to learn all you can about your disease. But, I'm sure you will learn, and you will improve, and eventually, you will get back to work. It's not all gloom and doom! :)

shaws profile image
shawsAdministrator

Sack your doctor as he is keeping you unwell. The aim of thyroid hormone replacements is to bring the TSH to 1 or lower with the FT4 and FT3 in the upper part of the range.

We have to take things into our own hands if we want to recover our health as many times it isn't forthcoming from either doctor or Endo.

If you are in the UK, there's no reason for not testing your B12, Vit D, iron, ferritin and folate. Everything has to be optimal if we want better health.

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

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of hormones and the test and take afterwards.

Always get a print-out of your results with the ranges and post if you have a query. Thyroid hormones have to be taken on an empty stomach, usually when we get up, with one full glass of water and wait an hour before eating. Food interferes with the uptake.

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