Confused! More T4 needed but of no benefit... eh? - Thyroid UK

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Confused! More T4 needed but of no benefit... eh?

Murphysmum profile image
11 Replies

I posted this last week but I suspect nobody saw it. So I’ll try again!

Further to my post from about 10 days ago when I posted my latest bloods, I thought I knew exactly what I was doing.

Since introducing T3 about 6 months ago, I had been increasing T3 only, leaving levo the same until now.

I’ve been finding I get around 3-4 weeks of feeling fab after a T3 increase before I begin to get muscle weakness again.

This time though, my bloods showed (as I suspected) my FT4 being quite low. I decided to increase by 25mcg to 150mcg and remain on 25mcg T3.

My problem is this. I usually feel the effects of any changes in meds within a week although I know from experience that it takes me personally about 12-15 weeks for it to settle down completely. Hence the difference in FT4 showing in bloods this time. I also had a swollen thyroid which is a dead giveaway for low T4 for me. I’m confused as when we increased levo before even although it was way over range (that brought my T3 up) I still didn’t feel better. And now, I feel worse! I’m back to snoozing in the afternoon, I feel sluggish, my legs feel heavy and I just feel like I’m weighed down again. The slight swelling in my thyroid remains. I’m confused. It seems my thyroid needs T4 but I feel no benefit from it. So what is the levo doing?

What do I do? Is this a sign that the levo is causing me issues? I know fine well if I increased the T3 I’d feel fab again but I’m already at the top of the range, and would it last this time? I surely can’t just keep increasing time and time again?

I know also that the increase in levo will filter through and increase the T3 slightly but quite frankly, I not willing to wait 12 weeks feeling like this.

My shoulders ache just typing this, ugh. All this had gone 😢

Photo of bloods from before just for reference

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Murphysmum profile image
Murphysmum
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11 Replies
marsaday profile image
marsaday

The t4 can be going to rt3 and not t3, but your ft4 is ok. A good place for ft4 is 15-20. However we are all different so you just have to keep plugging away with different experiment ratios and bloods to understand where you feel well.

So ideally you would get the rt3 tested next time.

So to recap on what happened. You wanted to try more t4 because you were tired? After this increase you feel worse?

You are doing the right thing experimenting but you must remember to try less t4 or t3 at different times to test out how this feels as well.

Please answer my question above and I can suggest the next move

Murphysmum profile image
Murphysmum in reply to marsaday

So yes, to recap: after introducing T3 my levo hasn’t changed from 125mcg/day. The last two blood tests my FT4 was around 18, having dropped from top of the range 22ish.

Since starting T3 I’ve found I feel fab for 3-4 weeks then the muscle weakness (most prominent symptom) reappears. Having increased by 5mcg daily to this point, I’ve found that it’s resolved. But only temporarily.

I’m don’t feel a lot worse but I definitely don’t feel better.

I hear what you say about RT3 but having been up to ridiculously over range with my levo before, I’m not sure that if thats the cause at present.

marsaday profile image
marsaday in reply to Murphysmum

I would not change both things at once.

Go back to 125 t4 and try adjust the t3 to suit.

Do try less t3 as well to see if this makes things worse as it can be a good guide on what direction you need to go in.

greygoose profile image
greygoose

Well, it would seem that it's not T4 that's needed. You need more T3.

Your thyroid doesn't need T4. Your thyroid is completely out of the equation, now. But I doubt the T4 is converting to rT3 because the level isn't high enough. And, absolutely no point in spending all that money on testing rT3 because if it's high, you'll have no idea what's causing it. It's not a very helpful test.

In your place, I'd just increase the T3 again. :)

Murphysmum profile image
Murphysmum in reply to greygoose

So do you think the swelling will go again?

This is the thing that’s bugging me as it’s a historical sign that I needed more levo. They along with the fact I’m nearly top of T3 range as it is 😬

Or do I learn to (partially) ignore ranges?

greygoose profile image
greygoose in reply to Murphysmum

If you mean it was a sign that you needed more levo when you were taking levo only, then that makes sense. But, now you've added in T3, it's more likely to be a sign that you need more T3. Levo doesn't do an awful lot in the body, except convert to T3. It's true that some people need high levels of FT4 even though they're taking T3. But, as you've tried increasing your levo and it hasn't helped, seems to me that what you need is more T3.

Murphysmum profile image
Murphysmum in reply to greygoose

Yes. That’s what I meant.

And thank you for that, it makes complete sense. I just couldn’t get my head around it!!

So, having kept T3 at 25mcg and increased levo to 150.... do we think I should decrease levo again and increase T3? 🤪

Mamapea1 profile image
Mamapea1 in reply to Murphysmum

PS I agree with greygoose re the T3👍 x

greygoose profile image
greygoose in reply to Murphysmum

Did you do that today? If so, I'd go back to 125 mcg and increase the T3 a bit.

Murphysmum profile image
Murphysmum in reply to greygoose

Well no, I did it last week but I’m happy to drop back and add in some T3.... I have a funny feeling it’ll work 😉

Mamapea1 profile image
Mamapea1 in reply to Murphysmum

Yes, I personally would ignore the ranges and go by how you FEEL. When you get to a point where you are completely stable and feel well, retest and make a note of it. Even then, it may change with time, but trying to constantly fit into the ranges seems to be impossible for some of us...I gave up long ago😕.

I'm assuming no one tested your levels before you went hypo, so how do you know what your natural, healthy levels were? When we're not ill, we don't visit Drs for tests. Also, some of us may be ok with our meds for years, then something changes.

Your 'normal' T3 levels when well may have been high for all you know. The ranges are devised by creating an 'average' from a bunch of healthy people, which is fine, but we're all different, and many things can affect absorption into cells as we go through life. It was trying to conform to the ranges that caused me such misery and illness...on paper, I was fine, in reality, I was anything but! Be brave and get well. x

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