Taper out T3-medication?: Hi! Last summer my... - Thyroid UK

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Taper out T3-medication?

chocolover12 profile image
15 Replies

Hi!

Last summer my health started to go downhill.

I am a bodybuilder since 10 years back, and I noticed I started to gain fat although no change in diet or exercise. I even became constipated and more tired. My heartrate at activity and rest was att 40-45 and had trouble breathing, couldnt even sweat. Contacted a doctor who ordered some bloodtests for the thyroid and vitamins, and she even put me on laxatives.

My TSH came out in the upper end of the range 3.9 (ref for TSH 0.4 - 4). T4 14 (ref 10 - 22) T3 5.2 (ref 3 - 6.6). Ferritin at 29. Doc said all was well and that I should continue with the laxatives for 2 months... during the summer I contacted several doctors because of my symptoms but to no avail.

My symptoms became worse and more and in november my TSH was still the same but ferritin at 19. At this time I had developed insomnia and suffered from muscle and joint pain and even loss of muscle. Weight was the same as in the summer but could not lose any fat. No doctor helped me at all, until I contacted a functional practitioner who prescribed 50mcg T4. At start this dose felt good, but within a month I started to gain weight and feel the same as before the T4. Bloodtest showed that the T3 had decreased to 3.5, while T4 increased to 19 and TSH at 0.9. My doc the prescribed 20mcg T3, so a T4 and T3 combination. I did feel slight the change of feeling better, but still no weightloss and still constipated. Tried T3 only (40mcg) because of the low ferritin levels and that is were I am at now. I dont know what to do anymore. My ferritin is still at 19 (iron has dropped too), although I have been supplementing iron for months and also eat red meat, liver, broccoli etc everyday. I even take HCl to support secretion of acid in the stomach. I still cant lose weight (fat) even in a calorie deficit and still constipated, and cant get my ferritin up. I even tried to increase the T3 dosage to 50mcg but started to feel a strange sensation i my throat, and didnt feel much better in my symptoms. I want to taper of the medication because it feels like I have messed up my body by going T3 only. Any advice because I want to feel (and look) like myself again?

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SlowDragon profile image
SlowDragonAdministrator

My TSH came out in the upper end of the range 3.9 (ref for TSH 0.4 - 4). T4 14 (ref 10 - 22) T3 5.2 (ref 3 - 6.6). Ferritin at 29. Doc said all was well

what medication or supplements were you taking BEFORE this first test

Ferritin was deficient

Next step - FULL iron panel test for anaemia

Plus full thyroid and vitamin testing including thyroid antibodies

Are you male or female

Pre or post menopause

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Day before test split T3 into 3 smaller doses spread through the day with last dose Approx 8-12 hours before test

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

You’re likely to see TSH is now totally suppressed

Very difficult to ween off T3 because your own thyroid likely shut down

SlowDragon profile image
SlowDragonAdministrator

functional practitioner who prescribed 50mcg T4. At start this dose felt good, but within a month I started to gain weight and feel the same as before the T4.

50mcg is only standard starter dose

Next step should have been to retest thyroid and vitamin levels

Vitamin levels must be OPTIMAL for levothyroxine or T3 to work

greygoose profile image
greygoose

Hi chocolover12, welcome to the forum.

So, a lot to unpack there! Let's start at the beginning and work through. :)

My TSH came out in the upper end of the range 3.9 (ref for TSH 0.4 - 4). T4 14 (ref 10 - 22) T3 5.2 (ref 3 - 6.6). Ferritin at 29. Doc said all was well

So, your doctor, who doesn't know any better because they don't learn about these things in med school, said all was well because all was in-range. She thinks that if a result is in-range - anywhere within the range - it just has to be good. But that is not so.

Your TSH is too high - the top of the range is too high even though it's lower than most! The TSH of a person with not thyroid problems (euthyroid) is around 1, over 2 means your thyroid is struggling, and over 3 means you have hypothyroidism. However, NHS doctors have been taught that the TSH has to go over 10 before there can possibly be a problem - utter rot!

So, technically you are hypo. Your FT4 is only 33.33% through the range. Which is too low. Euthyroid would be around 50%.

Your FT3 is slightly better at 61.11%, which is better. But, the clue here is that the FT3 should not be higher in range than the FT4. When a thyroid is failing, it tends to make more T3 than it normally would, in order to keep you going.

So, here we have two indications that you are hypo, plus the symptoms - weight-gain (more likely to be water retention than fat), inablitity to lose weight, fatigue, constipation, inability to sweat, breathing problems, low ferritin. But, doctors don't know anything about all that.

No doctor helped me at all, until I contacted a functional practitioner who prescribed 50mcg T4. At start this dose felt good, but within a month I started to gain weight and feel the same as before the T4.

This is perfectly normal. 50 mcg is just a starter dose. Four weeks is too soon to increase it, but the signs that you are ready for an increase are that symptoms start returning, and even new ones appearing. So, after six weeks, you should have been restested and dose put up to 75 mcg.

Bloodtest showed that the T3 had decreased to 3.5, while T4 increased to 19 and TSH at 0.9.

To be expected. Taking the levo reduced your TSH to the point where it was no-longer stimulating your thyroid to make hormone. It stopped making T3 so you became entirely reliant on conversion of T4 to T3. But, it was too soon for that to start happening. So, whilst your FT4 rose, due to the levo you were taking, the FT3 dropped.

My doc the prescribed 20mcg T3,

Did you start taking the 20 mcg in its entirety? Not a good idea. All hormones need to be started low, and increased slowly, to give the body time to adapt. With T3 that means starting on 5 mcg for at least two weeks, and increase by 5 mcg at your own pace but leaving at least two weeks between each increase.

Tried T3 only (40mcg) because of the low ferritin levels

I don't understand that. What have the ferritin levels got to do with T3 monotherapy?

Did you increase by 20 mcg all at once? If so, another bad idea and probably not well tolerated by your body.

still no weightloss and still constipated

Yes, well, seems to me - although I don't have your time-line - too many changes in a short time and the changes are too brutal. You didn't even give levo a fair chance, from what I can gather. You ditched it on only 50 mcg. You probably needed around 125/150, even with the T3.

All this takes a hell of a lot of time to sort itself out. You didn't go hypo over-night, and it's going to take longer to get you back to normal than it took you to become ill. Patience is the key.

My ferritin is still at 19 (iron has dropped too), although I have been supplementing iron for months and also eat red meat, liver, broccoli etc everyday.

Did your doctor ever do a full iron panel? If not, your next step should be to get that done.

Do you take vit C to help with iron absorption?

Have you had your vit D, vit B12, folate tested? They could be low as well, causing problems.

I even take HCl to support secretion of acid in the stomach.

That's good. Do you also take pepsin with it? Do you get enough salt? Very important to get B12 tested because low B12 can also cause low stomach acid.

I still cant lose weight (fat) even in a calorie deficit

Not a good idea, either. You'll just go into starvation mode. And if - as I suspect - your weight-gain is water, not fat, it won't make you lose weight.

I want to taper of the medication because it feels like I have messed up my body by going T3 only.

Absolutely not, no, you haven't messed up your body. Lots of us are on T3 only - I am myself. And I don't feel in the least messed up. T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. Some people need it, some people - like me - are happier without it. You cann't possibly know if you need T4 because you didn't give it a fair chance.

Any advice because I want to feel (and look) like myself again?

Well, you're not going to like this, but my advice is to go back to the beginning and do it again - and do it properly this time. :)

First of all, get full thyroid testing:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

Slowly drop your T3 down to about 20 - 5 mcg reduction every two weeks - and add back in your 50 mcg levo. You don't want to cut out the T3 completely because your earlier labs showed you to be a poor converter. So, you need the T3.

Continue with the HCL for stomach acid.

Get an iron panel done.

Supplement any other nutrients you are low in:

B12 should be over 550 if it's a serum test/over 100 if it's an active test.

Folate should be at least double figures.

Vit D is more complicated, Post the results when you've got it tested.

Eat normally! About 1500 calories a day. Starving yourself isn't going to help.

And, that should be enough to begin with.

Most importantly don't fret and be patient! If Rome wasn't built in a day, a hypo patient certainly wasn't restored to good health in one day either! x

Zephyrbear profile image
Zephyrbear in reply to greygoose

15000 calories a day??? I’m hoping that’s a typo… 🫣

radd profile image
radd in reply to Zephyrbear

Z,

It is said the worlds strongest man used to eat 15,000 calories a day!

greygoose profile image
greygoose in reply to Zephyrbear

Sorry, yes. I got a bit over-enthusiastic with the zeros! Should be 1500, of course. :)

radd profile image
radd

chocolover12,

Welcome to our forum,

Great advice above from replies above. I just wanted to add you don't mention thyroid antibodies and will need to get TPOAb and TGAb tested to eliminate Hashimotos autoimmune disease.

If elevated thyroid antibodies remain unmanaged, this can result in chromic inflammation that will not only retain weight but can alter iron mechanisms resulting in low labs. Low iron levels are notoriously common on the forum as intricately tied in with hypothyroidism. We need adequate amounts of thyroid hormone (and low inflammation) to utilise iron correctly and drive erythropoiesis so it would also be useful to get an iron panel and FBC to see how your iron is working and eliminate any anaemia.

Agree with greygoose you need your T3. You also need enough protein in your diet to balance or will start burning muscle instead of fat. Once T3 reaches your muscles and cells it will aid protein synthesis and and raise BMR, but you must allow the right conditions such as adequate iron, zinc, B vits, etc.

Stay on T3-only for now as you don't want to keep changing thyroid hormone replacement meds. However, your final replacement med might be T3-only or something like NDT that is much easier to dose if your body tolerates T4 once all deficiencies are addressed.

Sharoosz profile image
Sharoosz

Hi, I was going to attach an article (pdf) I recently read on iron, testing it and copper but can't seem to find a way. Perhaps if you pm me I'd be able to send it. Very interesting, hope it would be helpful.

helvella profile image
helvellaAdministratorThyroid UK in reply to Sharoosz

You cannot attach any files here. Only include some images in posts and replies.

Otherwise, make the file shared somewhere and post a link to the file.

Sharoosz profile image
Sharoosz in reply to helvella

Ok thanks. Not sure where to do that so if anyone is interested, please pm me.

helvella profile image
helvellaAdministratorThyroid UK in reply to Sharoosz

There are many file sharing services available.

Here is a reputable article which might serve to help get you started.

uk.pcmag.com/file-syncing-a...

Sharoosz profile image
Sharoosz in reply to helvella

Thank you!

radd profile image
radd in reply to Sharoosz

Sharoosz,

Or copy and paste the PDF if it isn't too long.

Sharoosz profile image
Sharoosz in reply to radd

Probably too long for that but thanks.

bagsypartime profile image
bagsypartime

Interesting reading the replies some of which lost me a bit.But i got lost on the question, the gp didn't diagnose and the patient had to find alternative doc to give levo and then very quickly t3.Heart rate upon exercise is 40-45.

I am the worlds worst for n plus one experiments but would never dare attempt some of the above.

I am iron deficient and bought some HLC of the internet as mentioned by the poster.But i thought the advice saying good for you to choolover a bit risky.My logic was maybe i don't absorb its because 1. i have hypothyroidism. 2.I am older (68) and old people have low stomach acid. 3.I had a bypass and heart people absorb poorly.

I say use the HCL with extreme care.I take it after a meal.

The advice to eat protein is good advice.

Water retention can be a problem.Sometimes this is heart related.

And finally can i stick up for the doctors a little bit.Interpreting test results is more like fortune telling on here.I read some brilliant insights and connections i would never have dreamed of but the vast majority of us simply get levothyroxin given to us and TSH tested every year.That's it.

The rabbit hole of ones own health being a fascinating subject and totally unique is tempting, but mostly we are all the same.

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