Hypo on increasing t3 with mid-range ft4 - peop... - Thyroid UK

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Hypo on increasing t3 with mid-range ft4 - people with same experience please! :)

19 Replies

Hey everyone,

I was wondering if there are many on here that have been increasing their t3 and lowering t4 because they were having more hypo symptoms on t3 increase with a mid range or high level t4?

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19 Replies
Murphysmum profile image
Murphysmum

This was me some months back.

For me, the breakthrough came when I stopped levo! All of a sudden I felt much better. I don’t know if physiologically it’s possible but it was as if the levo ‘blocked’ the action of the T3.

As I’ve said before, I’ve found I need some levo, almost to give a baseline it seems. Again, I don’t know if that’s actually how it works, I just know that’s how it feels for me.

Similarly, I think sometimes I thought my symptoms were hypo, when actually it was too much T3? I’m still working on this but my muscle weakness (as discussed before!) is better again on less.

There’s clearly a very fine balancing act to be done and I’m still trying to find it!

Have you tried lowering T4 right down? I know lots of people said they needed T4 in range but for me I ‘think’ I possibly need it very low or below range.

Time will tell!

Good luck 😉

in reply to Murphysmum

Hey Murphysmum, good to talk again, thanks for your comment :)

This makes sense to me. I feel like there is some interference, my Endo says it can happen and loads of patients of his have to be on 50/75 mcg t4 with higher 30-40 mcg t3.

It's so annoying when you go up and up and you feel worse?

I haven't tried no, I chickened out :) I just can never make a decision, it scares me lol I will try tomorrow or at the weekend, I can't take these symptoms anymore!

Murphysmum profile image
Murphysmum in reply to

If it helps, when I stopped my levo I felt SO much better! Like my veins were filled with blood not treacle 😂

However, after 6 weeks the peaks n troughs of the T3 were worse and I was more tired. I put back in 25 levo and it improved.

Then as we talked about I reduced the T3 and my muscle weakness has improved. At the moment I’m sticking on 45 (split 3x15) with alternating 25:50 levo to see how that goes. I’m also going to do bloods to see where I am. I dropped to 40/day but that caused my heart rate to drop to around 40bpm and I felt awful.

I’m fairly certain therefore that I’m headed the way of your consultant! I think I like him/her 😜

Looks like I need to head back to see my Endo now anyway as stupid gp can’t get his head around what I’m doing. Hopefully she’ll be supportive.

Good luck trying, let me know how you get on 🙂

in reply to Murphysmum

Haha I love the treacle analogy! 😂 I went for bloods a while ago and my bloods didn't even want to flow, zero blood pressure lol

It does help, thank you :) it's encouraging!

It seems you are also on the right track there with 45 and 25/50, keep me posted how you get on!

I have seen your other post, silly gp, they really think what we take is cyanide! Hope you can clear this up shortly.

My endo is very understanding thankfully, he was very sweet last week, he said he just wants me to feel better and it doesn't matter how and what I take

Murphysmum profile image
Murphysmum in reply to

Well I’ve been putting off going back to see the Endo as her parting comments were about TSH and heart/bone issues. Put me off as she’s been great before that.

So it worries me that she’ll tell me off for increasing, even though my response is that I’d rather take the risk than not live my life now.

We’ll see. Interestingly when my hr goes low, my bp shoots up.

Out of curiosity, you say your FT4 is high/med, what is your T3 on that dose?

I think I’m in love with your endo!!

in reply to Murphysmum

I see, tsh obsessed Endo that wants to comply with guidelines :/ sorry to hear. If she says anything, just say that you refuse to be bedbound and sick and will she take responsibility of that. Lack of t3 cause bone problems too. When will they learn medicine.

Low hr relates to high bp sometimes too.

Sure! My t3 is 17.5 on those results.

Haha yes, he is special! 😍

Murphysmum profile image
Murphysmum in reply to

It had been going sooo well until she said that!

When I argued back she said @well it’s not proven, that’s the problem”.

As I see it, that means it’s not proven either way, so I’ll take the risk, thanks!

in reply to Murphysmum

Totally, it's your decision! It makes my blood boil

Murphysmum profile image
Murphysmum in reply to

sorry, on what doses Rita?

in reply to Murphysmum

Oh sorry, ft4 is mid range of 112 mcg Levo and ft3 in high in range on 17.5, I take them together. On Levo only I was not well, high Levo and ft4 gave me low ft3, under mid range

Murphysmum profile image
Murphysmum in reply to

Very similar to me pre T3.

200mcg levo gave me an FT3 of something like 3.5, mid range but I was very unwell.

I guess my worry is that I should have been optimal at somewhere around 75-100mcg levo and 20-25mcg t3. But as I always decreased levo as I increased t3 and stuck like that for 6 weeks before changing again I don’t understand how I could’ve missed it.

If I feel unwell now reducing, that says I need that amount.... doesn’t it? 😬🙈

Sheesh, it’s such a long, very tricky balancing act!

in reply to Murphysmum

That's it. Bloods can look good and you may feel terrible, and my doc confirmed. He says that tests are generally unreliable and we need to go by symptoms and use bloods for general directions.

I see, it's that the symptoms of over and under are so similar it's hard to know really. But muscle weakness I had with overmedication personally, while stiffness in muscles with under.

Don't worry too much, I actually believe that there may be multiple doses we could be good on. See how you feel on 4 weeks of increased t4 first. I mean reducing back to 25 and 75 right now could give you bad symptoms :( I wouldn't recommend it , but I know you know it

Murphysmum profile image
Murphysmum in reply to

Oh no, I didn’t mean I was going to try that - I just meant it worries me that I missed a sweet spot somewhere.

Don’t worry, no rash changes happening. I’ve gone too far for that!

Thats interesting. What I can’t understand is right back at the beginning I didn’t have any muscle problems - they started after I’d tried really upping my levo (under direction if Prof Toft then). Then gradually, after starting T3, all my other issues disappeared one by one, but that remained. Somewhere around 25-30mcg T3 I felt great and then the muscle weakness came back.

It never went away with subsequent raises but has improved by lowering. It’s not gone though so I have no idea what’s going on!

Hence the bloods and I’ll get an idea where I am.... maybe. Personally I’m with your endo - ignore the blood, how do you feel!

in reply to Murphysmum

Sorry if I misunderstood and you are definitely doing the right thing, I admire your patience!

Hmmm maybe that's levo's side effect, especially when it started on commencing Levo. Weird. Or maybe its one symptom which will resolve in time? It seems like it's always coming back, but now with the way the dose is it may be coming back and going.

Yeah I had bloods done before that were totally weird and didn't reflect how I felt at all!

Big hugs Murphysmum x

cazmania7 profile image
cazmania7 in reply to Murphysmum

Hey murphysmum can I ask what prompted you to drop the T4? And what does your T4 levels look like now?

I’m aware some people binned off their levo completely and only take T3. Trying to get an idea as to what triggers people to try that!

Murphysmum profile image
Murphysmum in reply to cazmania7

So I thought that was where I was heading. (Sorry you hijack your thread Hidden !)

I stopped it because I realised (despite raising/lowering together), that I probably should have stopped my levo. As in I was originally taking 175mcg levo before starting T3 and I was then taking 60mcg T3 so way more if you convert. As I say, I thought I was probably headed down a T3 only route.

They was the reason really, no more than that and I have no bloods from them as I stopped monitoring it when my FT3 reaches top of range, way back at around 25mcg.

As I say, initially it was great but it didn’t last. Now I’ve reintroduced it but I’m very conscious that I don’t think I need much. I’ve got a blood test arriving today so next week I should have current results to give me a rough idea 😊

What do you take just now? How is that?

cazmania7 profile image
cazmania7 in reply to Murphysmum

Hey thanks for your reply. That makes sense that you add so much T3 you’re bound to need less and less T4 anyway.

I’ve been on 125mcg levo for years but been very poorly. Found this site and started 25mcg T3 and that’s high now but still feel rough. I dropped levo a bit too much a few of the guys reckon so I’ll up that a tad for two months and see where I am. Just kinda expected something from adding T3 but nothing as yet 😥

Murphysmum profile image
Murphysmum in reply to cazmania7

Hmm. So you’re taking 25 T3 and how much levo??

What are your bloods on that dose?

I’ll be been up and down with both T3 and levo and I haven’t got it right yet.

However, I did feel a lot better with T3 for sure.

Take your time. I’m a year in (nearly) since I started T3 and I’m so much better. I’d love to get it perfect but if I had to live the way I am now I could.

Don’t give up, it’s a long process 😉

cazmania7 profile image
cazmania7 in reply to Murphysmum

I went from 125mcg levo to 100mcg but that reduced my levo to the lower range so the guys on here suggested to increase levo to 112mcg which is what I’m doing now.

I’m glad you are improving! I hope the same will happen for me 😀

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