Help!! "Normal" TSH level , feeling far from normal!

Hi all

Have had an awful week was admitted again to hospital with palpitations and a racing heart, to cut a long story short it settled and I was able to come home.

I was on thyroxine in January for 6 weeks then told to stop as results weren't showing hypo anymore, still have the same rubbish feelings of hypo, anyway had bloods done again after the hospital episode and my

TSH 3.11mU/L (0.27-4.20)

When I had them done and was on Levo it was 1.5 then doc said to stop taking it???

GP wants to do more tests as my iron is showing low , mentioned something about Ferritin??

He said this could also attribute to my heart racing and palpitations??

He is now testing for antibodies as I had the Epstein Barr virus in my late teens

Any thoughts as to what is going on?

I'm cold

Itchy

Hair loss

Tired

Just want to feel human 🙃

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10 Replies

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  • I had racing heart/palps and in A&E quite often. Heart can play up when we don't have sufficient hormones for it to work efficiently. This is from TUK.

    thyroiduk.org.uk/tuk/testin...

    Your TSH is 'high' but not sufficiently so if your in the UK as they want a TSH of 10 before presscribing, You will have noticed in the above link what you need for proper diagnosis.

  • Do you have your results from when you were diagnosed and given levo? Do you know what the TSH was, then? If your TSH came down it was because you were taking levo, it didn't mean you didn't need it anymore! Honestly, these doctors are hopelessly ignorant!

    A TSH of 3.11 is hypo, but doctors like it to be over-range before they'll do anything.

    Having the Epstein Barr virus could affect your immune system. So, your doctor is testing your antibodies - hopefully the TPO antibodies - to see if you have an autoimmune disease. But, with his knowledge of thyroid, the lord only knows which autoimmune disease he's looking for!

    I think that what's going on is, you're hypo and your doctor is an idiot. But, I could be wrong. :)

  • Hi

    When I was admitted to hospital my TSH was 5.9 then I started on Levo , GP retested 6 weeks later and it was 1 , I was told then that I had a virus and didn't need it anymore?? Thought I needed to be on it for life??!! Have been retested again and now it's 3.11 also is that why maybe my iron is low as I'm unable to absorb vitamins??? I feel like I'm going around in circles as I think we all know our own bodies and how we are feeling!

    Also have nodules on thyroid which they GP wasn't interested in😩🔫

  • I think the problem is, here, that the normal protocol is, when you first have a test with a high TSH, to wait another three months, then test again. If the TSH is still high, then they take that as proof of hypo. However, it seems that you only had the one test. You doctor can therefore claim that it was just a virus or something that raised your TSH, and you don't really need levo.

    However, it would seem that your TSH is now rising again. The best thing you can do, is wait it out and retest in about three months time. If the TSH keeps rising, he can no-longer claim that it's just a virus.

    Everyone has nodules. Even people who are euthyroid. They are rarely a problem.

    If you are hypo, then yes, you will have low stomach acid, and be unable to absorb vitamins and minerals. But, low iron is not, in itself, proof of hypo, I'm afraid.

  • Low iron could be the cause of your palpitations. Oxygen is transported around the body by clinging to the iron in the red blood cells. When oxygen is low then the heart beats faster to produce more - by pumping more blood. My simplistic non -medical explanation. 😊 Low Iron = Low Oxygen.

    Also T3 levels can affect the heart.

  • Thank you, this reassures me! Thought I was going to die!! Think a lot is also when I have the palps and increased heart rate I panic then too!!

    It's a long hard slog with these GP s isn't it! Feel like I'm banging my head against a brick wall!!!

    L x

  • Sorry you're having a bad time. My TSH was 4 and I was having symptoms. Had to keep badgering my former GP for a year until he finally tested me. My endo says many endocrinologists feel TSH should be below 2 and for many below 1. See a different doctor! Good luck!

  • Thank you for replying!! Yes I'm having all the symptoms and I'm puzzled as to why they still won't except as its obvious my TSH is rising??? Yes bloods Tuesday , results Friday with another GP! And I'm not leaving until I get some answers!!!! Wish me luck!

    L x

  • You've got the right attitude! I was offered mental health questionnaires on several occasions before I was taken seriously. Go get 'em!

  • Well what a cheek!

    Think I would have knocked my GP out!!! Yes let's hope I get somewhere!! Fed up of being fobbed off! I will let you know how I get on!

    L x

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