urgent help with T3 problem : I started taking T... - Thyroid UK

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urgent help with T3 problem

sugarlove1 profile image
11 Replies

I started taking T3 13 weeks ago from a private endo. I increased it gradually and am currently on 10mcg twice per day and lowered my levo from 175mg to 150mg. My problem is I actually feel worse than I did before! My last blood test showed that my T3 levels had gone up but could be better but I feel more tired than before taking the T3 and my whole body is aching like mad. Even after taking the dose of T3, I feel sleep and often nod off. I’ve go no energy and my weight isn’t budging despite cutting right back on cals and upping exercise. I’m meant to be going to Glastonbury in a few weeks and it’s going to kill me feeling like this!

Doing more blood tests tomorrow to see if that sheds any light, but just wondering if anybody else has felt worse on it? I don’t know if I’m over medicated or just intolerant of synthetic medication.

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11 Replies
candi1 profile image
candi1

I'm in exactly the same situation....started T3 several weeks ago, now up to 10mcg twice a day, have not yet lowered my Levo which is still at 100mcg. I sleep a lot more deeply and a few other things have improved but overall am the same as you....tired all the time, no weight loss etc.....I hope someone has some suggestions on here as to why we're having these odd reactions. I was looking forward to being full of new found energy and all the other positive things that are supposed to come with T3. I have blood tests and endo appointment early July. I'm worried about saying anything to him in case he just takes me straight off the T3.....it took me years to get the prescription and I do not want to lose it unless there is good reason.

sugarlove1 profile image
sugarlove1 in reply tocandi1

I actually feel like stopping it but my endo says to get bloods done and see what’s going on. I felt better with more energy when she initially started me on it, but I don’t know if I’ve been upped too much now or whether my Levo is too high? The aching in my body is horrific and I’m feeling wiped out even doing a short walk. She advised I take folic acid and Vitamin D as I was deficient in both, so it shouldn’t be my vitamin levels causing the problem. I’m so disappointed as I really thought this was going to help me. I’m running out of time to feel better for Glastonbury and it’s put me right off going now. Don’t know whether to drop the T3 a bit and see if I feel better. Only got 20 days to go now! At this rate I’ll be asleep all the time and struggling to walk anywhere.

candi1 profile image
candi1 in reply tosugarlove1

Don't take Folic acid, take MethylFolate....same thing but more bioavailable ..and low vitamin D is not good, ...I've been taking 5000 IU of vit D3 a day for years.. but you must take Vitamin K as MK7 along with it.

One strange thing I've noticed is that if I take a good vit B complex while taking T3....not at the same time....I feel generally a lot better. I ran out, so for a few days did not take them and I felt worse....now back on them and feeling an improvement again.

greygoose profile image
greygoose

Did your levo actually need lowering? Could be it didn't and now your FT4 is too low.

I’ve go no energy and my weight isn’t budging despite cutting right back on cals and upping exercise.

This could also be a problem. Cutting right back on calories and increasing exercise is not always a good idea when you're hypo. And if your weight-gain is water-weight - as it usually is with hypos - then it's not going to help you lose weight, either. I would say consume more calories and cut back on exercise, see what happens. :)

sugarlove1 profile image
sugarlove1 in reply togreygoose

24/04/2024

4.6 pmol/L

FT3 levels normal (normal range 3.1 - 6.8 pmol/L)

THYROXINE

24/04/2024

16.5 pmol/L

FT4 levels normal (normal range 12 - 22 pmol/L)

THYROID STIMULATING

HORMONE

24/04/2024

0.11 mu/L

TSH levels low

These were my most recent blood tests and I’d lowered the levo for a while at this point. The results before starting T3 and lowering the levo were Previous

TSH 3.34

T4 17.2

T3 3.3

I’m now just about to test again.

greygoose profile image
greygoose in reply tosugarlove1

So, your levo didn't need reducing. Your FT4 was only 52.00% through the range. And taking T3 reduces the FT4 anyway. It's now only 45.00%, which could very well be too low for you as an individual. If I were you, I think I'd try increasing the levo back up to where it was before, and see if that helps.

Your FT3 is still only 45.00% which is pretty low - especially for someone taking 20 mcg T3 - so not surprising you're not feeling any better. But how do you take your thyroid hormone? Do you always take both of them on an empty stomach leaving at least an hour before eating or drinking anything other than water, and at least two hours away from medication/supplements? Your absorption doesn't look that great.

sugarlove1 profile image
sugarlove1 in reply togreygoose

Thanks. I take the levo and 10mcg of T3 when I wake up. Endo said not to bother waiting an hour before food or drink as she doesn’t think it makes a difference in her opinion? I’m seeing Dr Georgina Conway who seems to get good results and a king waiting list to see her. Then I take another dose of 10mcg T3 at about 3pm. I know my endo was wanting to raise the T3 more in the next few weeks aa she wants it higher and I dropped the levo off my own bat when I started the T3. It never occurred to me that the drop in levo could be making me feel worse! I’m waiting for the private blood test to come through the post and then I’m going to test again. It doesn’t look that clear in my last post, but the top results were the most recent ones and the bottom one was before starting the T3 and before reducing the levo.

greygoose profile image
greygoose in reply tosugarlove1

Endo said not to bother waiting an hour before food or drink as she doesn’t think it makes a difference in her opinion?

So much for her opinion, then! And she's not getting good results in your case, is she! Perhaps those she gets good results with ignore her opinions.

It never occurred to me that the drop in levo could be making me feel worse!

Some people just need good levels of FT4 even when their FT3 is good. We're all different. I don't need any T4 at all! But many others need it quite high in-range.

the top results were the most recent ones and the bottom one was before starting the T3 and before reducing the levo.

Yes, I did understand that. :)

AKatieD profile image
AKatieD

Paul Robinson has a post about it here - I suggesst you read the whole article....paulrobinsonthyroid.com/mor...

It starts

"What happens if a patient adds some T3 medication?

The same mechanism occurs when a little T3 is added alongside T4 medication. But the results can be even more pronounced.

When a thyroid patient begins to add T3 to T4 medication, the first thing that happens is that free T3 levels increase.

FT3 levels rise and the thyroid patient feels better! This is not a surprise, as T3 is the biologically active thyroid hormone. This improvement can last for 2 to maybe 7 days.

But the improvement is often not sustained. It is a top-up of T3 after all, so why shouldn’t it last?"

sugarlove1 profile image
sugarlove1 in reply toAKatieD

I don’t understand the article I’m afraid 😣. I’ve posted my most recent results in a reply to grey goose

AKatieD profile image
AKatieD

It is just saying that it is not uncommon to feel worse after the initial honeymoon period when you first add T3, as your body adjusts by reducing the T4 to T3 conversion. So you have added some T3, but reduced the T3 your body is producing from converting the T4 to T3, so leaving you worse off.

But he says the fact you had an improvement at first is a big clue that T3 will help.

He suggests checking the things that the others have mentioned above like cortisol, iron etc, but if they are ok, you probably just need more T3 or T4.

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