Thyroid results while taking T3 only: Hi there... - Thyroid UK

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Thyroid results while taking T3 only

jand123 profile image
23 Replies

Hi there,

I have been liaising with a Dublin based doctor. But my GP is very concerned as my blood results results came back as follows, twice similar results:

Free T4 Below lower range 9.0 - 19.1 panic limits results <5.1 pmol/L

TSH Below lower 0.35 - 4.94 panic limits result 0.02 mIU/L

Free T3 range L 2.4 - 6.0 results 5.7 pmol, which seems ok

My consultant has me on Thybon20 3 times a day = 60mcg per day. Although I feel ok my hair has been thinning and I am tired in the morning first thing. The weight is still high. Cortizol levels were treated and should be ok now. I tried adding back Eltroxin but I have a bad reaction to it. Rashes and swelling.

So I am wondering if perhaps I should be taking my T3 differently, or less? Should I worry that the Free T4 is so low? I know the TSH is acceptable.

Any advise please, before I pay him a large amount again every 3 months to get me right! ?

I am okish accept the weight and hair.

Thank you

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23 Replies
SlowDragon profile image
SlowDragonAdministrator

On just T3, and no thyroid output of your own from your thyroid…..it’s inevitable that Ft4 is extremely low or even zero

Ft3 looks good

60mcg is the typical replacement dose for someone on just T3

Important to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

jand123 profile image
jand123 in reply to SlowDragon

Hi Slowdragon, I was just concerned because the lab put panic alert! I thought they would know better vit D , B12 ferritin and folate were good, B12 high so I came off that. I was taking D3 B12 turmeric selenium vit c folic acid B1 zinc magnesium. But last week I decided to change to Ultra Woman from H&B, which has lower amounts of all vits plus all the Bs I thought for my hair! It has a lot more including vit K copper calcium etc. will see how that goes!

SlowDragon profile image
SlowDragonAdministrator in reply to jand123

Multivitamins are never recommended on here …especially H&B own brand

Most contain iodine never recommended for anyone on replacement thyroid hormones

Better to take a GOOD QUALITY vitamin B complex with folate in

And separate vitamin D

jand123 profile image
jand123 in reply to SlowDragon

Ok back to my original plan then! So you don’t worry about selenium etc ?

SlowDragon profile image
SlowDragonAdministrator in reply to jand123

Test copper, zinc and selenium before supplementing

Spangle15 profile image
Spangle15 in reply to SlowDragon

Do you know the best place to get these tested in the UK? Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to Spangle15

Medichecks, Blue horizon or Thriva probably

Spangle15 profile image
Spangle15 in reply to SlowDragon

Thanks SlowDragon.

DippyDame profile image
DippyDame in reply to jand123

I'm high dose T3 only and had an unexpected thyroid test at an annual review despite telling the GPs it was a waste of time and resources.A few days later I had a night call from an out of hours doctor who asked me how I was feeling

Fine thank you ...why?

They had been contacted by the lab because my TSH and FT4 were rock bottom and my FT3 over range....they were concerned I was ill with myxoedema.

Must say I was quite impressed by their efficiency and concern!

I explained why the result was like that

It was accepted and we said goodnight

Doing the test did cause extra work that could have been avoided if the GP had listened to me and understood why those results were to be expected in my T3 dose.

On higher doses of T3 -only we monitor by signs and symptoms....not by lab tests.

Your results are of no concern though I do wonder if you might benefit from adding another 5mcg to see if it helps with your weight and hair problems.....both symptoms of low T3

jand123 profile image
jand123 in reply to DippyDame

Ok ! Is that adding 5mcg each dose or in total? I take 20 in morning, 20 at 3pm and 20 at 9 pm. Unless you think that is incorrect?

DippyDame profile image
DippyDame in reply to jand123

It's all very individual to each person!You probably have the following options to try to improve from OK-ish

Some of us take our full dose together... as thyroid expert the late Dr John Lowe did.

I followed his protocol

Others follow Paul Robinson and split their dose that didn't work for me

There is no one correct way....trial and error!

You could try 2x 30mcg doses....say am and pm

If that doesn't help....try a single dose

I'd leave 2 weeks before timing changes

A single bedtime dose works well for me and it keeps T3 well away from food and drinks

Or, early morning at least an hour before food and drink

Or, as the next approach try adding 5mcg (65mcg total) in a single dose....

( You may need your FT3 to be top of range or even slightly over)

I'd suggest early morning single dose first or, finally, single dose at bedtime

You really just need to experiment to find out which works best for you.....it's slow and tedious but it eventually worked for me.

I've taken as much as 212.5mcg but after many months now take 75mcg....but I have a form of Thyroid Hormone Resistance which has further complicated things.

Important that you check resting heart rate ....I do a quick check daily....mine is around 60/65bpm.

Most adults have a resting heart rate between 60 and 100bpm. The fitter you are, the lower your resting heart rate is likely to be. For example, athletes may have a resting heart rate of 40 to 60bpm, or lower!

If your RHR goes higher than your normal rate you may be overmedicated.

I think making some tiny tweaks will improve on your current OK-sh

Hope this ramble makes sense!

Good luck...and please keep us posted.

PS

You may find this of interest

thyroidpatients.ca/2019/08/...

jand123 profile image
jand123 in reply to DippyDame

Thank you, this makes absolute sense. I will try 2 doses first as I find the 3pm is always difficult as I like to snack. I will add extra 5 in evening first to help morning tiredness. Must find app for heart rate. You have been very helpful thank you

DippyDame profile image
DippyDame in reply to jand123

I use a cheaper version of a Fit Bit to check HRate

Good luck

jand123 profile image
jand123 in reply to DippyDame

Hi there, just to let you know, I did split the dose morning and evening , 8am and 11pm, added 5 mcg more in the morning and my hair is getting thicker and end of eyebrows are back. I feel much better, did the bloods yesterday , so will see how that goes. Weight is still not dropping, but will see ! I think the midday meds weren’t working for me and I wake up feeling more awake , thanks 😊

DippyDame profile image
DippyDame in reply to jand123

That's a good start...well done.It will take some time for the T3 to settle into all the cells and for the metabolism to improve.

I'm still noticing very small improvements after more than 5 years on T3, patience is "the name of the game"!!!

Jazzw profile image
Jazzw

Those results are exactly what I’d expect to see for someone taking T3 only.

Slightly troubling that your GP doesn’t understand what happens when you take T3 only—I take it your GP knows you only take T3?

jand123 profile image
jand123 in reply to Jazzw

Yes she knows what I am taking, it was the lab who put on panic alert! Ok so it’s not serious if my free T4 is low ?

Jazzw profile image
Jazzw in reply to jand123

No, because your body has sufficient T3 on board, it has no need to make any T4 (it’s still making some but there’s no requirement for loads).

It’s all about that pituitary feedback loop. In a person with a normal thyroid, when the hypothalamus senses that there isn’t enough thyroid hormone in the blood stream, it sends a signal to raise TSH levels which causes the thyroid to produce T4 and a little bit of T3. If more T3 is needed, the liver converts a bit of the T4 to T3. As soon as the levels are right in the blood, the TSH lowers again. In people with normal thyroids it all happens so quickly we don’t even notice the change in TSH.

But when you take T3 you bypass all of that—and this would be true even if there was nothing wrong with your thyroid! You take synthetic T3, the levels of active thyroid hormone in your blood are good. The hypothalamus doesn’t need to produce any TSH and therefore no signal is sent to the thyroid to make any T4–so blood levels of T4 will be quite low and TSH really low (suppressed).

If you were taking levothyroxine as well as liothyronine your FT4 levels would be higher—but you’re bypassing the conversion of T4 to T3 step in taking liothyronine on its own.

jand123 profile image
jand123 in reply to Jazzw

Thank you it makes sense !

humanbean profile image
humanbean

I've never seen a panic alert before. Interesting!

jand123 profile image
jand123 in reply to humanbean

I know! That’s why I was concerned although I thought it was normal

Jazzw profile image
Jazzw in reply to humanbean

It seems to be a thing in other parts of the world, like the USA and Japan—they’re using the word “panic” instead of “critical”.

It’s fair to say from the lab’s POV, those results are very abnormal—in a supposedly healthy person with no pre existing thyroid illness an FT4 as low as that absolutely would be a cause for concern.

I assume the lab hadn’t been notified that they were testing the blood of someone on T3 only—and perhaps even if they did know about that, they couldn’t over-ride the warning notes being added to the results.

jand123 profile image
jand123 in reply to Jazzw

Well this is In Ireland where most docs will only prescribe Eltroxin. I didn’t even know the pharmacies had Thybon20 ! I used to import naturethroid myself and avoid doctors, but sadly they are gone and Armore is so expensive here. I didn’t really do well on Armore anyway ! No the lab wasn’t given any details of my meds

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