Question for T3-only people: how low is your fT4? - Thyroid UK

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Question for T3-only people: how low is your fT4?

miriammsm profile image
22 Replies

Hello,

This is a question for people on T3-only treatment: I know fT4 falls when you start taking T3-only, and no Levo, but how low does it get? Do you still have some T4 circulating? if yes, where does it come from, if TSH tends to be suppressed?

And: is it something we should worry about?

Thank you.

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miriammsm
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22 Replies
humanbean profile image
humanbean

I still have a thyroid which works (but not very well). Personally, I think I have pituitary damage reducing my TSH, but nobody has ever suggested testing me for that. I'm on T3 only (my choice). My last Free T4 was :

Free T4 1.94 pmol/L (12 - 22)

miriammsm profile image
miriammsm in reply to humanbean

Very low, isn't it? And how do you feel? Do you feel T3 alone is all you need?

I am asking because I am not very sure about what to do. I think T4 should have some effect of its own, apart from converting to T3 (when conversion works). Some people prefer combining T4/T3. On the other hand it's what I have been trying, and it's not working very well for me, so maybe I should forget T4 and give T3-only a try..

humanbean profile image
humanbean in reply to miriammsm

T3 only has been very good for me. Over the last year or so I have got a lot better than I was and I am glad I've had the chance to do this. I don't regret having spent this time on T3 only, in any way.

I will admit though, I still hope to make a success of NDT at some point. Having no T4 worries me. And having a high risk of osteoporosis as I do, I would prefer to take something that will help my bones. NDT contains calcitonin, and I won't be getting that from anywhere else while I'm on T3 alone.

Chrys profile image
Chrys in reply to humanbean

Yes its strange isn't it that at our recent endo visit, we were told that taking NDT causes a high risk of osteoporosis!

puffyface profile image
puffyface in reply to miriammsm

Hi Miriammsm, It sound as if we are in similar positions. I was on t 4 only for about 8 months and just never felt well, although initially my bloods were in range. Then at the beginning of December I added some T3. I felt better for a month or so, and then not great again. I saw my doctor last week and he put me on 20mcg of t3 twice a day (12 ish hours apart) and I have the same questions as you.

I decided to try it as I can always add some T4 back in if its not working. So far...I think I feel better....although my evening tablet made me feel a bit shaky last night. I think that's just getting used to it, rather than having too much....but time will tell.

There seem to be lots of people who feel better on t3 only, and so maybe it's worth a try for you if the combination isn't working.

Good luck!

miriammsm profile image
miriammsm in reply to puffyface

Yes, I think it our situations are similar, puffyface. I am still thinking, but I think I will at least try to increase my t3 and decrease t4 dose... Maybe I can change slowly to t3-only. Thank you, and good luck too!

I'm not medically qualified to advise but only tell you about my own situation. Because of allergy to thyroxine I can only take t3 so, when blood test are taken t4 is totally ignored. Not sure if that is any help to you. I've been on t3 since about 2001 but had Hashimoto's since mid 1980s. 'M'

Gayrose profile image
Gayrose in reply to

Interesting. Why are doctors so against prescribing t3 only, I have been on t3 only for five months now, I feel so well.

But I have not lost any weight, doctor said I would. How much t3 are you taking. Tell me more please, need to know more :)

faith63 profile image
faith63 in reply to Gayrose

you can raise your t3 until the hypo symptoms, like weight start to go down or until you get hyper symptoms, then reduce by 6.25, if using 25mcgs tablets.

Gayrose profile image
Gayrose in reply to faith63

I am on 50 mcgs Every 12 hours. I shall raise to 75 mcgs every eight hours, hopefully weight will start to come off. Thank you for your knowledge , very appreciated. :)

Enjoy you day :)

Crunchieeagle profile image
Crunchieeagle in reply to Gayrose

That seems an awful lot. That is the equivalent to 300mg of Levo

faith63 profile image
faith63 in reply to Gayrose

i would try it 1 time a day, like Dr lowe did with his patients...away from food or vitamins. You may even need less, then and it works better this way.

Chrys profile image
Chrys in reply to Gayrose

In the NHS it's because of the rip-off price, so CCG's try to stop it being prescribed.

faith63 profile image
faith63

for myself..no t4 circulating and ft4 levels way below range. T3 supresseses me TSH , so no t4 is made.

Hi, my ft4 is 0.9 on t3 only. I'm on 70mcg split into 4 doses. And still getting the amount right over a year later, still going up.

Suin profile image
Suin

I'm on t3 & t4 , and have been contemplating to go on t3 alone since I've had RAI -20 yrs ago I'd prob have no t4,

is that right? 🕵

loueldhen profile image
loueldhen

On T3 only. Endo measures t4 (=low at 3 - but no range given) but ignores it and expects it to be low. I have asked if it's worth taking some t4 (although on its own it kills me) but he says its not worth it.

SAMBS profile image
SAMBS

Hi Miriam I. Just apologise because to answer your question I've hijacked your post a bit!

My test 4 Feb 15 said

FT3 - 2.6 ng/l (2.3-4.2).]

] 1st FT testing I've ever had done. Was 1st dx UK 05/2000.

FT4 10.2 (8.9-17.6) . ]

TSH 6.99 mUI/I (0.55-4.78)

------------------------

2 months before in Dec 2014 - TSH 3.96! I was on 100mcg Levo

It was decreased to 87.5 after the Feb '15 test. Then TSH fell to 0.05 in June No change in med.

after that I messed about myself with dosage to check things out and reduced to 50mcg

Sept '15 - TSH rose to 17.65 - do t t

Dec '15 - TSH down =10.31 - dosage changed by Dr to 112.5mcg.

Jan '16. - TSH down = 0.38 - just under range but dosage from Dr remains at 112.5 mcg.

My next blood test when I will have been on 112.5 mcg for 3-4 months and also will ask for FT3/4 , Vit B12 - Ferritin & Folate again (if all agreed by Doc) will be a good comparison from 1 yr ago in April.

Can't answer any more than that and what it will tell you here I don't know - but so not to confuse things too much, am about to make a separate 2nd answer, that may help some of the others also, given my results above!

SAMBS profile image
SAMBS

....to be read in conjunction with my last reply - above!

From 14th Dec '15 I have also taken, with advice from Pharmacist who saw blood test results, a Natural Supplement that contains Ginseng, Royal Jelly, Honey and 1 other ingredient Acerola - it is a South American cherry - found on Wiki it says ( Some of the most unique health benefits of acerola include its ability to manage diabetes, reduce signs of aging, prevent certain types of cancer, improve heart health, increase circulation, reduce allergic reactions, stimulate the immune system, increase eye health, protect the skin, and improve mood.

My mood (brain fog, confusion) certainly improved - I felt better in myself overall. I continue to eat gluten and dairy v much in moderation. On the 2nd month of 10 day stoppage as per instructions (January) I really had several bad days again though, same time Flower was unwell!

I had already bought a similiar product which includes ginger and Guarama as well as above, also a Sth American cherry - put Guarana into your search engine and or click on live strong.com/Guarana - it is a stimulant and weight loss product. I can't copy and paste from their website.

After feeling unwell I started on the new supplement produced in laboratories in Belguim by Fortepharma. It is stronger than the Arko Royal - it does come with sensible WARNINGS though about the ingredients and their effects. I have taken for about a week and am putting some flesh back on - I had gone somewhat skeletal last year - so in MY circumstances it has been helping me. However, I've not taken any last 2 days, I don't feel I need it, but if I start creeping backwards again I can take one as and when needed. It is not a continual Supplement. There are many conditions people mention on here it would help with, constipation, fatigue brain fog.

I re-emphasise it needs to be taken with caution - it is NOT is NOT a cure all for thyroidism or immune problems but will help depending on individual circumstances!

The website can be found at FortePharma - it came up in French for me and there is an English language version where it goes to Easypharmacy.com

My health has been complex , given I also a have v low blood platelet count, cirrhosis as well as being autoimmune.

miriammsm profile image
miriammsm in reply to SAMBS

Thank you for your tips, Sambs!

Babette profile image
Babette

I'm on t3 only have levels of t4 are usually undetectable. I'm currently on 20 mcg a day split into two doses. I feel ok but don't have the latest blood test results.

miriammsm profile image
miriammsm

Thank you all for your answers and advice! It is good to know that nothing happens when t4 is undetectable, because mine dropped below normal although I had reduced Levo only 25mcg (from 100 to 75) to be able to increase my t3 dose (it was normal-high before the reduction). I got worried and increased it again a little bit, but maybe I shouldn't care about t4 (as Levo alone never worked well for me and t4+t3 doesn't seem to be enough).

Let's see.

Good luck!!

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