Suppressed TSH confusion (heart disease, osteoporosis)

Thank you to everyone who replied to my last post re my GP wanting to reduce my Levo from 100 / 125mg alternate days to 100mg every day. There was no explanation so I assume that he will say I am putting myself at risk of heart disease and osteoporosis if I don't reduce my dose.

I have been trying to find all the links that say I am not putting myself at risk so I can explain this to my GP if necessary.

As a reminder, I had a Blue Horizon test as well as a NHS test, as GP wouldn't test my FT3 . My remaining symptom is pain at the end of day and when asleep (which has been discussed in my last post too). These were my results....

MAY 2017

Blue Horizon results....

TSH 0.23 (0.27 - 4.2)

T4 TOTAL 106.7 (64.5 - 142.0)

FREE T4 16.55 (12 - 22)

FREE T3 4.29 (3.1 - 6.8)

GP (NHS RESULTS)

TSH 0.16 (0.35 - 5.5)

FREE T4 14.8 (10.0 - 19.8)

Back in November I was on 125mg per day & my results were...

TSH 0.12 (0.35 - 5.5)

FT4 17.2 (10.0 - 19.8)

I wasn't as 'knowledgeable' about my medication then and got talked into a reduction but looking back my results do appear to be better & I certainly wasn't in as much pain as I am now (not sure if this is conicidence or if something else is actually increasing my pain now)

Anyway, I have found lots of links re low TSH but they all say different things & yet I thought these organisations would be in agreement.

**Bristish Throid Foundation said in this statement... btf-thyroid.org/resources/n... (click on first link for full paper, section 8)

"Although fine tuning of serum TSH levels within the refer-

ence range may be indicated for individual patients, deliberate

serum TSH suppression with high dose thyroid hormone

replacement therapy (serum TSH <0.1 mU/L) should be

avoided where possible as this carries a risk of adverse effects

such as cardiac rhythm disorders including atrial fibrillation,

strokes, osteoporosis and fracture (1/++0). As an exception,

patients with a history of thyroid cancer may require deliberate

suppression of serum TSH if there is a significant risk of

recurrence.

"

**Dr Anthony Toft in his book 'Understanding Thyroid Disorders', says ..."increasing the dose of throxine such that TSH becomes undetectable at less than 0.01 mU/l in the long term...increased risk of future heart disease or osteo'..."

**The Britsh Cardiovascular Society heart.bmj.com/content/84/4/455 says 'there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation.'

* Thyroid UK has its own 'myths' section too.

According to the British Thyroid Foundation and my current TSH result, I am at risk. According to Dr Anthony Toft, my TSH is fine and I am not at risk and according to the British Cardiovascular Society, with my serum T3 level, I am also not at risk. (Correct me if I'm wrong, serum T3 is the same as FT3??)

I am in the process of writing a letter to my GP requesting a return to 125mg Levo a day, as appointment to discuss will be weeks away and I want to make sure I have the correct facts if evidence is needed as to why a rise will be safe.

If anyone is able to comment on the facts in these links or provide any better ones I would be hugely grateful.

As always...thank you.☺

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12 Replies

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  • If you put "suppressed TSH atrial" in the search box you should find quite a lot of posts where this is discussed. :)

    Doing that just now found me this research: ncbi.nlm.nih.gov/m/pubmed/8...

    There will be more... :)

  • Though this might do the trick too: sciencedaily.com/releases/2...

  • Thank you for all the links...I had read just about every post trying to find links where everyone said the same thing...lol. My head's in a spin.

    If my TSH is not classed as suppressed at the moment nor was it when I was on 125mg then hopefully my GP will increase my dose back. 😊

  • The British thyroid Foundation states:

    deliberate

    serum TSH suppression with high dose thyroid hormone

    replacement therapy (serum TSH <0.1 mU/L) should be

    avoided where possible as this carries a risk of adverse effects

    such as cardiac rhythm disorders including atrial fibrillation,

    strokes, osteoporosis and fracture.

    Your result when on 125mcg T4 was 0.12 which is arguably not going under this "danger" level as 0.12 is higher than 0.1 Your current result is also not going under this level so at no time have you ever been <0.1 ;-)

  • Thank you...😊

  • Hi Janey, you can't always go by the TSH result.

    I think you would know if you were having too much thyroxine, I did anyway.My blood pressure was high, I was sweating all the time and having palpitations,that was on just 100mcg thyroxine,and it seems I can only tolerate 75 mcg thyroxine which is not enough,so I have T3 as well.

    As for the osteoporosis, I have osteopenia which is not as bad, but both my Mum and Sister have osteoporosis and don't have a thyroid problem,so my Doctor agreed with me that it was genetic and nothing to do with suppressed TSH.

  • The trouble is my GP appears to be going by my TSH alone which is why I need to arm myself with the knowledge...lol. Fingers crossed he will bow down to the more superior knowledge from this site 😆 x

  • Anyway, surely it is your risk to take and your GP should respect your desire to have a life and take the risk, rather than just have an existence.

  • True, but experience with GPs sometimes says otherwise 😉Hopefully he will agree or I'll be back here ranting...lol

    Will keep you all posted.

  • You should find this helpful :

    healthunlocked.com/thyroidu...

  • Indeed it was... thank you x

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