More T3 only questions!: Ok, so I’ve been... - Thyroid UK

Thyroid UK

139,075 members163,218 posts

More T3 only questions!

Murphysmum profile image
12 Replies

Ok, so I’ve been gradually increasing my T3 since I was prescribed it alongside levo last March.

I’ve mentioned in previous posts that I find I feel great for about 4/5 weeks after an increase in T3, then I have to increase. I’ve been going it alone, and increasing/decreasing levo all year.

I’m now taking 50mcg T3 split and last week decided to drop my levo completely as in the last I have found it very debilitating if the levels were too high.

My questions are: did anyone else who has done this find pros/cons from dropping the levo? Or feel no different? I feel more tired this week, have bags under my eyes and I feel like I’m craving more energy. My legs feel crampy and shaky quickly whilst out walking - I’ve had this in the past but it had resolved after an increase. I wonder if it’s more of a T4 or T3 symptom though.

It is very soon to be feeling any different I realise but when increasing levo I feel it within a few days even though it takes a long time for my bloods to settle. I wonder if it’s the same in reverse?

My main issue is muscle weakness but I do have brain fog and problems focussing too. I am fairly certain these are due to low T3, but I’m worried the it could be too much T3??

Also, how do I know how long to continue to increase for? For people on T3 only, did you reach a piont where you thought “ah, I feel normal”? My bloods will already show I’m way over range but I’m worried I end up over medicated.

I have had no “over” symptoms thus far.

Written by
Murphysmum profile image
Murphysmum
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Aurealis profile image
Aurealis

Not everyone can manage without T4. I just about managed three weeks but had to go back on it.

Murphysmum profile image
Murphysmum in reply to Aurealis

Reasons being what? What were you struggling with if you don’t mind me asking

Aurealis profile image
Aurealis in reply to Murphysmum

I felt generally ill and as if my brain was struggling. I can’t really describe it, not like anything I’ve experienced at any other time. Initially I thought I’d overcome it but I just kept deteriorating. Sort of a headache but not really painful as such. We’re all different. Good luck.

Murphysmum profile image
Murphysmum in reply to Aurealis

Thank you.

I’m just curious as to what to look for I guess. I wonder if T4 symptoms are different to T3! That sounds daft but I was just thinking about it and whether my ongoing symptoms are due to low T3, and if I’d notice anything different now the T4 will be dropping off.

Again thank you and I hope you’re well now 😊

in reply to Aurealis

I have the same experience. I have always been a poor converter and felt much better on NDT. At one point, I decided to try T3 only to see if it would make a difference...it did, but for the worse. I cannot explain it, but I need T4 as well, and I need my FT4 levels around midrange on NDT (even though some people feel great with low or even below range FT4 levels as long as their FT3 levels are high enough). In my own experience, T3 and T4 are two different hormones and do different things in the body, and they are not interchangeable to me.

Aurealis profile image
Aurealis in reply to

I agree that they seem to do different things, but I could only tell by leaving off T4 for a while, before that I thought they did the same thing. I only need T4 at bottom of range but I take T3 with my NDT.

Mamapea1 profile image
Mamapea1

Well I felt so much better when I dropped the Levo...I have THR and after a prolonged period of emotional/physiological stress I really felt it had become 'poisonous' to me. I too had to go it alone, but thank goodness I did! I amost ran out of T3 a while ago due to supplier problems, so I tried to make it last and added some T4...big mistake for me, never again! Instant migraine, pain everywhere, shallow breathing, etc.

Maybe you need to increase the T3 to replace the T4 that you've stopped? Many people seem to do well on 75mcg daily, although I need more than that. Do you take magnesium and Vit D, B12, etc.? Deficiencies or low levels could cause the symptoms you describe too. I actually feel the same if my B12 isn't OVER range for some reason...we're all different.

As for dosage, I just stopped when I felt further increases didn't really improve symptoms, and so I settled on the previous dose. It's all trial and error when going by symptoms, but the best way to go for many of us.

It's also so hard to tell sometimes, as us hypos often have so many other things going on...adrenals, etc. and it does seem to take a while to get there, if indeed we ever do!😊 I certainly feel a whole lot better, although I doubt I will ever get back to my best pre hypo self, mainly because it was decades ago, and I've aged a fair bit whilst waiting for Drs to help!😳 I think you're doing absolutely the right thing, and it's definitely worth a try👍 x

Agapanthus1 profile image
Agapanthus1

Have you had a look at the Paul Robinson info. He has written 3 books and has a fb group you can join called The Thyroid Patient's Manual. He talks about all the treatments for hypothyroidism but mainly focuses on T3 only, which is what he used to recover. He goes into loads of detail.

Lozzer1991 profile image
Lozzer1991

I’ve come off levo completely now. I don’t think it was doing anything as my blooded show I likely wasn’t converting it. I was on 175, dropped to 150 + 10 lio in 2 doses, then 100 + 15-20. I now take 30lio only over 3 doses (worked up to it) and haven’t felt this good in years. I used to get headaches but upped the lio dose slowly and they went away. It used to come on around the 7-8 hours after taking the lio.

Murphysmum profile image
Murphysmum in reply to Lozzer1991

This is interesting, thank you.

I’m now wondering if (although I have no “over” signs) if I could be on too much T3.

The fact that I feel so much better now it’s gone makes me wonder if it’s that that was making me feel bad and I might have over shot my sweet spot!

I say interesting because that seems a low-ish dose of T3. My thinking was that as my muscle weakness etc is still around (tho not so bad) I needed more T3.

I guess I just need to wait and see. Time will tell

in reply to Murphysmum

Hope you are feeling better. Sometimes it's difficult to tell between hypo and hyper symptoms. Usually my symptoms were always caused by overmedication on T3, just a slight increase would mount up and I'd get muscle aches from the T3 dehydration. I wake up and my eye lids were stuck to my eye balls. I'd have loose bowels, and couldn't think. But all over medication. Such a fine line to balance on. I hate it. 20 years and still trying to ride the waves. 😊

Murphysmum profile image
Murphysmum in reply to

Thank you.

I’ve never had any of these symptoms! I did go through a phase of kind of dry eyes, sticky eyelids but that’s gone again.

It’s hard trying to figure it out isn’t it?

You may also like...

Do I need more T3 on T3 only?

50mcg, 11am 20 mcg, 3 pm, 20 mcg, having increased from 60mcg. I still have constipation if I...

T3 only update. Suggestions?

Ok so I’m now into week 3 of now levo and 55 mcg T3. I’m finding that the head pressure and slight...

Experimenting with T3 only

I’ve had a none too uncommon nightmare journey over too many years with Hashimoto’s.. Just recently...

T3 only and heart rate question

I have been on T3 only for 3 years and on a stable dose of 55mcg split into 3 doses. I have noticed...

Continue with t4/t3 or Levo only

keep reducing levo and introducing t3. As I reduce more Levo, I do become more hypo. I have two...