T3 mono-therapy: I would like to know if it is... - Thyroid UK

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T3 mono-therapy

Elisabeth41 profile image
29 Replies

I would like to know if it is possible for someone who is on T3 mono-therapy to have an in range TSH and feel well?

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Elisabeth41 profile image
Elisabeth41
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29 Replies
Cake-Maker profile image
Cake-Maker

I have had T3 monotherapy in the past at various doses. I’ve always felt well but my TSH has never been in range and I’ve never been concerned about that

I would go so far as to say that it’s not possible to dose with T3 monotherapy and have a TSH which is in range. In fact many find that TSH is suppressed.

Dosing with T3 only takes a great deal of care so that you don’t miss your ‘sweet spot’. If you do, you’re likely to feel unwell.

Elisabeth41 profile image
Elisabeth41 in reply toCake-Maker

Thank you Cake-Maker for your reply.

jimh111 profile image
jimh111

I think those who need T3 monotherapy usually have a low TSH. I suspect those who don't need it could do well with a TSH within the reference interval.

Elisabeth41 profile image
Elisabeth41 in reply tojimh111

Thank you . That's good to know.

Cake-Maker profile image
Cake-Maker in reply tojimh111

Sorry Jim. Could you please clarify? Are you saying that TSH is an indicator of T3 requirement or the result of T3?

jimh111 profile image
jimh111 in reply toCake-Maker

For most people TSH reflects the combined effects of fT3 and fT4 in the blood.There is evidence that TSH stimulates T4 to T3 conversion. So, if someone's pituitary isn't producing as much TSH as it should there will be reduced T3 levels, especially within cells. I believe these people ned T3, perhaps more than is normal.

It's important to distinguish between a TSH that is low because of too much hormone and one that is low because the pituitary is underperforming.

Cake-Maker profile image
Cake-Maker in reply tojimh111

Many thanks Jim. That clarifies your point

DippyDame profile image
DippyDame

I'm on high dose T3-only (100mcg) and my TSH has fallen off the range because T3 lowers both TSH and T4

It's not possible to take T3-only in a therapeutic dose,and have TSH in range

TSH is not important in this situation.

on T3-only you must be very aware of your symptoms because they are vital as a dosing guide

Listen to your body....not to a list of numbers!

Elisabeth41 profile image
Elisabeth41 in reply toDippyDame

Thank you for taking the time to give your experience.

Cake-Maker profile image
Cake-Maker in reply toDippyDame

I completely agree.

Interestingly my TSH fell out of range even when I had mono therapy of T4 (Levothyroxine) in high dose. Sadly I was soon recognised as a non converter and Levo was replaced with T3.

I am surgically hypothyroid and we are a subset who will always need T3 (either in mono therapy or with Levo) to feel well.

TSH is not a thyroid hormone and with no thyroid and/or use of T3, it becomes redundant and of no consequence in interpreting blood tests. The increasing trend of using only TSH to diagnose and monitor is nothing short of scandalous

DippyDame profile image
DippyDame in reply toCake-Maker

Yes, TSH is a hormone!

TSH is a pituitary hormone.....but yes, it is not a useful or reliable marker.

It was first devised as a test for hypothyroidism ( high TSH)....nothing else.

They then tweaked it as a lazy marker to guide dosing....and the whole mess began causing misery for hundreds

I have a form of Thyroid Hormone Resistance which requires high dose T3-only.....but I had to research and discover that myself....and self medicate

Cake-Maker profile image
Cake-Maker in reply toDippyDame

My apologies. Omitted word ‘thyroid’

Have corrected

DippyDame profile image
DippyDame in reply toCake-Maker

Easily done!

Cake-Maker profile image
Cake-Maker in reply toDippyDame

And your success is because you did it yourself !

Tina_Maria profile image
Tina_Maria

I cannot comment on T3 therapy as I am not on T3, I take levothyroxine only and my TSH has been suppressed since the start of my therapy, which was 21 years ago now. I have accepted that my TSH will never be in range, as I need my T4 on top of the range and my T3 65% through the range to feel well. This ties in with my dose (100mcg), which is spot on with the 1.6 mcg levothyroxine per kg of body weight.

If I reduce my dose by only a little but, I am symptomatic and it does nothing to my TSH. I feel fine on my suppressed TSH, I can exercise a lot and my bones are good. As long as I am monitoring the situation, I accept the risk of my suppressed TSH, as this allows me a good quality of life. I would be more at risk of osteoporosis, if I had my TSH in range, which means that my thyroid levels would be too low and I could not exercise. It is all a fine balance and we all have to decide what works best for us.

Elisabeth41 profile image
Elisabeth41 in reply toTina_Maria

Thank you for your experience, it's good to hear you've found what works for you.

Cake-Maker profile image
Cake-Maker in reply toTina_Maria

You make very valid points.

Bertwills profile image
Bertwills

Yes, I’ve had TSH in range on a dose of 40 mcg which is lowish for monotherapy but if I increase my stomach doesn’t like it. TSH is usually about 1 to 1.5. Adding in T4 causes my TSH to drop out of range. I have felt well on this dose sometimes, unfortunately it varies but that might be due to other causes. Tricky to know.

Elisabeth41 profile image
Elisabeth41 in reply toBertwills

Thank you Bertwills, that is very reassuring to hear. Has your TSH ever been suppressed for a long time during your 'thyroid journey '?

Bertwills profile image
Bertwills in reply toElisabeth41

Yes, often whenever I try combination T3 & T4. I don’t think it’s something to worry about. The difficulty comes with NHS inadequate testing when dosage is based on TSH only.

Just make sure that your nutrition is good & all vitamins & minerals are as recommended here. I protect my bones as best I can this way. I also take a collagen Bone Balance everyday. It increases bone strength. I’m 67 so have to worry about them!

Elisabeth41 profile image
Elisabeth41 in reply toBertwills

Thank you. It is so good to hear of a positive experience. I do follow all the recommendations here. Like you I now find myself in a position where bone care has to become a priority.

Bertwills profile image
Bertwills in reply toElisabeth41

Apparently a trampoline is one of the best ways of exercising for bone health without stressing joints. I’ve got one on my Xmas list.

Elisabeth41 profile image
Elisabeth41 in reply toBertwills

Hope Santa's listening!

Cake-Maker profile image
Cake-Maker in reply toBertwills

That’s interesting. Do you get a first aid kit for when you fall off - which would be inevitable in my case I’m afraid 😟

Bertwills profile image
Bertwills in reply toCake-Maker

I’ll have to add that to my Xmas list, good thinking! 🤭

BB001 profile image
BB001

T3 has a greater effect on TSH than T4 and it is unlikely that TSH will be in range if you are on anything more than a small dose of T3. Search thyroidpatients.ca for TSH to get some interesting articles.

Elisabeth41 profile image
Elisabeth41 in reply toBB001

Thank you for your reply. I will have a look at the articles you suggest.

sparkly profile image
sparkly

I doubt it very much. You don't mention the reason for asking? Is it to keep gp happy having tsh in range?

Cake-Maker profile image
Cake-Maker in reply tosparkly

I wondered too. It’s always good to know why a question is being asked

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