Very low tsh level : Hi. I have been under active... - Thyroid UK

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Very low tsh level

Jossy789 profile image
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Hi. I have been under active since 2002. Had a few blips with it fluctuating slightly. Have been on 100mg daily. Been very unwell for a year after collapsing and being admitted to hospital for 4weeks last december2015. Had loads of tests done and they came back with severe Lyme disease. Then I was diagnosed with b12 deficiency and now on injections for that but had tests done a few months ago and my thyroid was playing up so they increased my dosage to 125mg. Just had another blood test done last week and docs rang me to say my tsh level was extremely high at 55.6 and have now increased my medication to 175mg per day. I am now worried that it is not coming down. Any ideas what will happen if it doesn't come down thanks

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Jossy789
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Youngandannoyed profile image
Youngandannoyed

My tsh 57 stayed high for almost a year yet my dosage I was on was wrong and I often hated taking the medication because it made me sick. Yet I had to learn to take the medicine. I take it when I first get up in the morning and I make sure after I take it I drink a lot of water before I eat to prevent me from having a upset stomach. I recently went to the doctor an my tsh numbers had drop to 5 I still have bad days where I'm weak and it is very easy for a common cold to cause me to have flu like symptoms. I would make sure I'm taking the meds correctly and also make sure the dosage is right I went from 175mg to 75mg. I've been diagnosed with Graves' disease

Redditch profile image
Redditch

If it doesn't come down you will get fatter and colder and more tired, just more of the same. Do you know what your TPo Antibodies count was? Have you recently had a virus? Sometimes it's autoimmune and sometimes it's an illness that sets it off.

Are you on strictly controlled diet? Are you off gluten, dairy etc? If not I would try it for 10 days, really eliminate anything that could be setting you off, flouride toothpaste, eggs, processed food, you may be able to help the cause. Can you tolerate vitamin C? I'd be tempted to get a lot of that down me. Dr Peatfield days 3g a day

Or... It might just come down by itself,

The important thing is to take care of yourself, you're having a bit of a thyroid crisis, you need rest, lots of it

You should at least have a test every couple of weeks to reassure yourself that it's coming down

Good luck

Jossy789 profile image
Jossy789 in reply to Redditch

Thankyou. Between this and my b12 and Lyme I feeling pretty rough. Cannot sleep at night so only managing to grab a couple of hours here and there. Just hoping it comes down.

Eddie83 profile image
Eddie83

Lyme is a very serious issue that probably affects T4->T3 conversion. The fact you are on such a high dose of T4 indicates to me that your conversion is tanked. In this situation, the TSH test provides little useful info; you need FT3 & FT4 tests so you can dose to place FT4 and FT3 within their range. It is likely that your adrenals are in poor condition, too. There are few docs who know how to treat Lyme effectively; although from what I've read, holtorfmed.com has treated some successfully, perhaps poking around on their site will give you some clues. To repeat what has been said above: it is critical that you also know if you have Hashi's (TPO and TGB antibodies), and that you are on a low allergen diet, which involves avoiding problematic substances like gluten, soy, yeast, dairy.

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