Suppressed TSH: Is suppressed TSH that dangerous... - Thyroid UK

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Suppressed TSH

NikNok777 profile image
21 Replies

Is suppressed TSH that dangerous? Mine has been that way for years now and I've been pretty stable but now my GP wants me to reduce either my Levo or T3 to bring it down which I'm scared to do as I know it will have a negative impact. He keeps scaremongering me with all the things that can go wrong but my argument is why change something that is working

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NikNok777
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21 Replies
Elegabte profile image
Elegabte

I though the issue was with elevated T3 rather than “suppressed” TSH so as a first measure they need to be testing t3 (but am sure more knowledgeable forum members will be along in a bit).

Sewit1 profile image
Sewit1 in reply toElegabte

Yes they’ve come along! unfortunately my T3 was not checked only TSH and T4 for years. Thankfully I am well again on a much lower dose of Levo and a more plant based diet so Hey I’m happy and healthy now. I imaged the forum to be supportive with each other’s ideas put forward for each of us to consider and reflect And sometimes help with maybe a some useful information or experiences here and there not said ‘experts’ correcting us. Thanks for the heads up.

Lora7again profile image
Lora7again

The TSH is pituitary gland hormone and the reason it is low is because the gland has sensed you have enough thyroxine in your system. It is the T4 and T3 that tells you what your levels are. Don't let him reduce your dose so you become unwell. Can you post your results on here so members can advise you? You are entitled to see all your results because it is the law.

NikNok777 profile image
NikNok777 in reply toLora7again

Thank you - I am planning to ask for the past 5 years of results so will post the latest ones when I get them

in reply toNikNok777

In my own experience, T3 tends to suppress the TSH more than T4, so if your doctor wants you to reduce either of those, and you choose T4, but stay on the same amount of T3, your TSH is not likely to rise. Your doctor may then ask you to decrease T3 as well, which will put you in a lose-lose situation, most likely hypo from low free Ts.

I agree with what others have said - you should NOT reduce your dose based on the TSH reading. The TSH is only useful to make the initial diagnosis, then you need to go by the actual thyroid hormones - free T4 and T3, especially the latter since it´s the active hormone. If your free T3 is in range you are NOT hyperthyroid, regardless of your TSH!!!

NikNok777 profile image
NikNok777 in reply to

Thank you x

SlowDragon profile image
SlowDragonAdministrator

On almost any dose of T3 TSH will be suppressed ...it’s irrelevant

Most important results are Ft3, followed by Ft4

Important to regularly retest vitamin D , folate, ferritin and B12 too

Add most recent results and ranges if you have any

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s?

Ask GP to test vitamin levels or test privately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3 make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

NikNok777 profile image
NikNok777 in reply toSlowDragon

That's really helpful thank you - had severe Graves back in 1999 and had thyroid removed with 2 doses of Raidoactive Iodine (in Canada where I lived at the time) and eventually managed to get me to a hypo state and managed well with Levo and T3 since

Sewit1 profile image
Sewit1 in reply toSlowDragon

This info is very helpful,

fuchsia-pink profile image
fuchsia-pink

If you aren't on thyroid meds and have very low TSH (and usually very high free T3 and free T4 ie you are hyper) - yes, that can be dangerous. If your TSH is very low because you are on thyroid meds (and in particular lio ) then that's just what happens and isn't dangerous at all.

A subtle distinction - but one that seems to escape the vast majority of GPs - and endos who really should know better

NikNok777 profile image
NikNok777 in reply tofuchsia-pink

That's what I thought, thank you

AlisonL profile image
AlisonL

I have the same "discussion" with my GP regularly. My TSH has always been suppressed since I started taking T3 8 years ago and never changes, even after I stupidly agreed to reduce my T3 and became very unwell.

If you feel well and your free T3 is normal, then don't let them bully you into reducing anything. As others have said, suppressed TSH is only a problem if your free T3 is too high as well, and that's a different thing altogether.

NikNok777 profile image
NikNok777 in reply toAlisonL

Thank you x

in reply toAlisonL

Plus, I´ve read that in people who have had a suppressed TSH for years, it may never normalise, even if you go off T3 and back on levo only. So it´s really useless trying to satisfy your doctor by agreeing to lower the dose when you feel fine.

Also, thyroid cancer patients are supposed to have a suppressed TSH to minimise the risk of recurrence...if it´s not dangerous in them, why would it be in someone with Hashimoto´s or Graves´taking T3...?! I´ve asked doctors that but never got a satisfactory reply.

diogenes profile image
diogenesRemembering

My wife now in her 80's has had no thyroid for 50 years. For all that time TSH has nearly always been unmeasurably low and never any greater than 0.1. She has been a walker for much of this time and we fellwalked for many years without difficulty. She held a responsible scientific job which required long standing and decisive thinking. She does not have osteoporosis or AF, She takes 150 ug T4 (1.6 ugT4/kg body weight) and has FT4 high in range or just above. At this moment she is vigorously cleaning the kitchen floor. Don't let any doctor fool you with the now discredited evidence that low TSH in therapy is necessarily dangerous. For some individuals that might be so, but only because they show at that time evidence of OP or AF. If you don't, then just think: OK if there is a small risk, would I rather have a pinched life under the weather all the time because of inadequate treatment or would I take the small risk of later problems but live a full life in the meantime. That is the alternative you should put to your doctor.

NikNok777 profile image
NikNok777 in reply todiogenes

Bless you thank you x

tattybogle profile image
tattybogle

these may help you make you own mind up about the risks......... everything has risks...... it's all relative .

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

And here is the study i take my evidence from

academic.oup.com/jcem/artic...

NikNok777 profile image
NikNok777 in reply totattybogle

Thank you x

NikNok777 profile image
NikNok777

Those were his exact words! :) Thank you x

NikNok777 profile image
NikNok777

OK I think I'm convinced now - thank you everyone for your speedy and helpful feedback, I really appreciate it

thyr01d profile image
thyr01d

I too have this discussion with my GP, my Consultant though is supportive and instructs the resistant GP to check my bone density and heart regularly. I guess we each have to weigh up the risks versus our quality of life which is individual but can you get your GP to check you regularly?

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