Possible that T3 medication is making symptoms worse?

[PJaneH]

HI, this is my second post here, i put a lot of my info in my first post. the advice i received was really helpful so wanted to try to get some insights into my latest results.

Since my last test in January this year, I have increased Levo from 50 to 100 mcg and dropped T3 supplement from 30 to 5 or 10 mcg and finally got a result which shows TSH improved.

Thyroid test History:

Test (lab range) 2016 / 2017 / Jun 2018 / Dec 2018 / Jan 2019

TSH (0.5-4.4) 4.1/ 4.9 / 5.0 / 5.2/ 6.5

F T4 (8.2-22) 16.2 / 15.2 / 13.9 / 16.1/ (not tested)

F T3 (2-7) 4.9 / 4.8/ 4.8 / 4.5 / (not tested)

Medication: Was on 30 mcg T3 since early 2016 and 50 mcg Levothyroxine since mid 2018

Since January upped Levo to 100 mcg levo and reduced T3 to 10 mcg

My most recent results showed my TSH has finally gone down!

Current results (march 2019): TSH - 2.3 and T4 - 14.1 (no T3 done)

Apart from the medication dose change, one of the only differences is taking Iron supplements on the advice of people here who said low ferritin can adversely affect medication effects. I have also raised my calories to a healthy amount (1200-1500) over the last couple of months after being very restrictive for years as a way to try to beat impossible seeming weight loss.

I am wondering 2 things:

1. why TSH might finally be going down but free t4 is still lowish/ lower than it has been for a while?

2. Is it possible t3 actually has no or negative effect for me? i am going to go off the T3 for a while before next test. I had been on an increasing dose for years, and dont seem to get any benefit in my free t3 numbers, my TSH only has gotten worse on it and i am starting to suspect it actually helped contribute to seemingly impossible weight loss. has anyone found T3 detrimental? I seem to be at best immune to it, i can take quite a lot (say 60-70 mcg) and have never felt any effect, remain tired, and my numbers got worse. Now on more T4 and less T3 i have seen the first improvement in years. I know many people have great experience with it compared to t4, but is there anyone who has had bad experiences or understand why it mightn't work? I saw one thing about it potentially saturating receptors so that they effectively become resistant to T3

I am not noticing feeling a lot better (but im working out a lot at the moment) and my weight and other symptoms arent really improved but i am encouraged that the TSH has finally after years gone down.

[greygoose]

I saw one thing about it potentially saturating receptors so that they effectively become resistant to T3

Goodness! Are you sure you've got that right? Normally, one has to saturate receptors to over-come resistance to T3. People with thyroid hormone resistance need high doses of T3 just to get a little inside the cell. I don't think receptors become resistant.

At one point, I was taking 225 mcg T3 and still felt hypo. Now I've been able to reduce it to 75 mcg - my resistance has improved - but can't go any lower.

The TSH really isn't the most important number. It's a very unreliable indicator to thyroid status. Your FT3 still had room to improve, so perhaps you weren't taking enough T3, rather than too much. Do you always take your T3 on an empty stomach, waiting at least one hour to eat, etc. just like levo?

[PJaneH in reply to greygoose]

though i can see mixed experiences on Levo, almost all people seem to respond well to T3. I dont have hashimotos and was only ever subclinical to start but after increasing T3 for three years without any other treatment my TSH went up to 6.5 and my free T3 went from 4.9 to 4.5 (ranges in original post)

Its just so frustrating because after being on T3 my TSH got worse and my free T3 also got marginally worse over three years. My symptoms did not get better, inlcuding near impossible weight loss, and in fact I wonder if the T3 made it worse (altough know it is meant to be very helpful for energy and metabolism).

This is the only thing could find about cells becmoing resistant to T3 which i thought may be going on for me...

youtube.com/watch?v=ODIWvbj...(Not working as expected?)

so it made me wonder if some people do find it unhelpful

Now i have been on increased Levo and reduced the T3 right down finally at least TSH is coming done (i know this is not the only number to look at, but it is still good that its finally responding? Although, free t4 is lowest it has been now so im not sure whats happening there? what is the connection between increasing levo, reducing my tsh but also reducing the free t4? i will get my free t3 tested next time

It could also be helpled by adding iron supplements. my ferritin was 15 (at bottom of range) - and i belive you pointed out to me the importance of having decent levels.

[greygoose in reply to PJaneH]

It is indeed important to have optimal ferritin/iron.

I'm really not convinced by that video. That's the first time I've heard either of his theories about taking T3, and lord knows, I've done a lot of reading.

But, surely you started out on levo only, didn't you? And, added in T3 slowly, starting with 5 mcg and working up slowly by 5 mcg every two weeks? If so, how did you feel on levo only?

Is your T3 prescribed? Which brand is it?

Now i have been on increased Levo and reduced the T3 right down finally at least TSH is coming done (i know this is not the only number to look at, but it is still good that its finally responding?

If your TSH is going down, but your FT4/3 aren't going up, then it's meaningless. The TSH is supposed to go up and down in response to FT4/3 levels. TSH itself doesn't cause symptoms. And, if you're on levo only, and your TSH goes down, it could make your conversion even worse.

Do you always have your tests done early in the morning and fasting? If the blood draw isn't always done at the same time, you cannot compare TSH results.

I dont have hashimotos and was only ever subclinical to start

It's difficult to state with any certainty that you don't have Hashi's. It is possible to have Hashi's without ever having high antibodies. As for 'subclinical', don't be fooled by that. Even if it isn't Hashi's, it's not going to stay 'subclinical'. For one thing, thyroid function gets worse with age. So, if you start out at a disadvantage, anyway, it's not going to get better. Once a thyroid starts to fail, it usually goes on to fail progressively.

You didn't answer my question about how you take your hormone.

[PJaneH in reply to greygoose]

ah sorry

yes, i am very careful to take at least an hour before any food and then i dont have any other vitamins til four hours later. I do the blood tests in the morning fasting.

ive had 3 antibody tests and all negative.

My thyroid starting failing after few years severe physical illness and mental stress so i have always thought is is an adrenal/ stress / hormone cascade effect. No family issues with thyroid. My cortisol tests always were really high above range and DHEA below range

No i actually started on T3 5mcg maybe 3.5 years ago when my TSH was getting up to 3-4 and ft4 and ft3 not optimal, eventually increased to 50mcg then down to 30mcg and added 50 mcg Levothyroxine only 7-8 months ago

On T3 only my TSH increased from 4-6.5 and my ft4 stayed about the same. My ft3 went down slightlly over the entire years on T3

Now finally my TSH looks better for the first time it has fallen below 2.5. but my ft4 is the worst it has been.

I just dont think the T3 did anything positive for me.

If my TSH is falling that is not of any benefit at all?

[PJaneH in reply to greygoose]

Greygoose, can you please explain more of this for me?... 'And, if you're on levo only, and your TSH goes down, it could make your conversion even worse.'