Has anyone been issue free with a long period o... - Thyroid UK

Thyroid UK

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Has anyone been issue free with a long period of low or suppressed TSH?

helbell profile image

Bit of minefield question but aimed at those feeling stable over a longish term with concurrent in range free T3 and T4. Any heart or bone issues for example?

15 Replies

A suppressed TSH doesn't cause bone or heart problems, anyway. :)

helbell profile image
helbell in reply to greygoose

It's the earworm about suppressed TSH causing long term damage in the future. As well as I'm totally confused because many confident sources say suppressed TSH is irrelevant if one feels well, and free TS are good. Yet good information is coming out about conversion desensitisation risks from long term high hormone levels. Is there a difference in risk from suppressed TSH and normal range active hormones, or suppressed TSH and over range hormones?

But, yeah...that's good to know. Thx

greygoose profile image
greygoose in reply to helbell

There is no risk from suppressed TSH with in-range (won't say normal!) Frees. The risk is slightly increased with long-term over-range FT3.

Yet good information is coming out about conversion desensitisation risks from long term high hormone levels.

I haven't heard anything about that. which hormone are you referring to? Conversion can be affected if the TSH is suppressed, but it's usually people taking T3 that have suppressed TSH, anyway. But, conversion is a very complicated subject.

I take pretty much T3 only, and my TSH is suppressed - has been for some time - but therefor, I don't need to convert, anyway.

helbell profile image
helbell in reply to greygoose

High T4 or T3 replacement. Or, rather replacement high enough to give high/over range thyroid hormone levels. I think you've answered it though. Thanks again.

greygoose profile image
greygoose in reply to helbell

If your FT4 level is too high, that will affect conversion, because the T4 will start converting to more rT3 than T3. But it will go back to its usual rate of conversion once levo is reduced slightly. There is a lot of discussion about whether taking T3 would affect conversion, and if so, in what way. But, it would appear that nobody really knows that much about it.

My wife, nearly 50 years of T4 only therapy, no thyroid working, undetectable TSH from the start, doctor compliant with that, no OP, very occasional AF due to postural postprandial hypotension at breakfast. FT4 usually around 20 in the range 10-22, FT3 never measured.

helbell profile image
helbell in reply to diogenes

Thank you for that.

SlowDragon profile image
SlowDragonAdministrator

For many thyroid patients giving only a dose of thyroid hormone replacement so that TSH remains within range, means they remain hypothyroid, often totally devoid of energy and physically completely inactive.

That's no good for bones or heart

Low FT3 may contribute to osteoporosis, not just high FT3

tiredthyroid.com/blog/2012/...

If on thyroid hormone replacement, especially if taking any T3 or NDT then TSH is almost always suppressed

Many people find heart issues improve with addition of T3

healthunlocked.com/thyroidu...

helbell profile image
helbell in reply to SlowDragon

Thanks for that. Yes, always my understanding.

I have been on T4 for around 30 years. For most of this time my TSH has been suppressed. Until quite recently I was unaware of my suppressed TSH and indeed knew very little regarding my condition until I became really unwell and eventually found my way to this forum. A new GP had reduced my T4 as they believed with a suppressed TSH, I was seriously over medicated. My FT3 and FT4 however have always been in range. With advice from this forum I obtained many years of back dated results and could see that a suppressed TSH had always been 'normal' for me. I am now back on the dose I need to feel well and have absolutely no bone or heart problems whatsoever.

helbell profile image
helbell in reply to Elisabeth41

Excellent news. Yes, I feel well on suppressed TSH. Recent bone scan normal and 64.

I have had a suppressed TSH for decades, GP recently thought it could be causing bone issues, sent for a DEXA scan and I was shocked to find I have osteoporosis! I have a good diet, exercise a LOT. I was referred to an endocrinologist who agreed with my GP but did a full blood work up to see if we could find any other cause of the osteo, but we found nothing.

Currently he has me slowly, slowly,, slowly reducing my dose of thyroxine so we can get my TSH up (his goal is 0.5). So far so good and I am doing fine.

It is a complicated issue though, so many factors, but for me at least it seems suppressed TSH is a factor.

Interesting to read your experience. Thanks for sharing. And did that coincide with regular readings of free Ts? I've just had a work up including dexa scan prompted by insufficient pancreatic enzymes. Was also asked my menses history. Everything came back normal but now on enzyme supplements.

Yes, my T4 and T3 were always at the upper level, but I felt fine. I am very annoyed that my GP had never flagged the TSH as an issue before. I think it is so complex and different for all of us, but I have to address the osteoporosis so I have to try lowering my dosage. I have gone from 150 to 115 per day.

Good luck with the lowering. Oh, and I take it D is ok too. You have an unusual response from your gp, some might be envious having to fight about feeling unwell in the standard range. Be interested to know how you fare.

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