Increasing to find your ideal T3 dose

[Murphysmum]

What kind of levels are people at?

And if you are T3 only, did you increase/decrease T3/T4 until you got there?

I’ve been titrating for 9 months now - just wondering!

[greygoose]

I take 75 mcg T3 only. And, yes, I titrated slowly up until I got to a good place. Since then, I've occasionally checked, by going up or down a bit, that 75 mcg is right for me, and always come to the conclusion that yes, it is.

How often do you increase your dose?

[Murphysmum in reply to greygoose]

I’m finding I get 4-6 weeks after an increase of feeling good, then the old favourites appear again - muscle weakness, frozen shoulder, neck pain and general lethargy.

Three days after an increase I feel fine again!

If I’m honest I haven't done a blood test since the summer as my T3 showed as very slightly over range then, so I figure it’s way over now! I have no hyper symptoms - resting hr is around 56-62bpm, body temp usually around 36.7/8 degrees. I’m going more by how I feel but I know and dr will have a fit about that.

Does that mean I could be resistant, or needing T3 only?? I don’t understand it.

[greygoose in reply to Murphysmum]

I’m finding I get 4-6 weeks after an increase of feeling good, then the old favourites appear again - muscle weakness, frozen shoulder, neck pain and general lethargy.

That usually means that you need an increase, yes.

Does that mean I could be resistant, or needing T3 only?? I don’t understand it.

It certainly could mean you have thyroid hormone resistance at a cellular level. But, the only way you can know if you need T3 only is by trying T3 only and seeing how it goes. There isn't a blood test or anything, for that.

[Mamapea1 in reply to Murphysmum]

Don't worry about your Dr having fits...as long as you don't feel over medicated, or have any obvious symptoms, you'll be fine. We're all different, so really it doesn't matter what dose others are on, you have to get it right for yourself, and you will in the end👍

I personally found I couldn't tolerate Levo at all, and when I went T3 only, everything improved for me. I've ended up on quite a large dose, but feel well, and I was always prescribed a high dose of Levo for years, but I got progressively worse on that. What dose of T4/T3 are you up to now? x

[Murphysmum in reply to Mamapea1]

I’ve gone from 10mcg/ day starting dose to 50mcg at my most recent increase.

At the moment I’m trying my levo on an alternating dose of 50/75 but I find if my levo is low my thyroid swells. I had to put in a 100 last week and that helped but I’m sure that’s too much.

I tried a few months back to increase my levo as according to my bloods my FT4 was at the bottom of the scale (as expected) and I wondered if maybe I needed more. Too much T4 makes me really ‘heavy’ feeling though and everything aches. I reduced it again and three days later felt much better. A high dose of levo did the same a year or so ago and that’s why I was given T3.

I sort of just fail to see the point of bloods if the numbers are all over the place! I know my T3 must be way out of range but I feel better this way, temporarily.

Where will it stop? What dose are you on?

[Mamapea1 in reply to Murphysmum]

I take 150mcg T3, but in the hot summer I was fine on 125mcg . I can manage on less, (as I found out when supplies ran dry and I was forced to reduce to make it last😕) but symptoms keep creeping back one after the other, and adding any amount of T4 just gives me daily migraines and muscle/joint pain. I have gone up to 200mcg some time ago, but I didn't feel any further benefit, so went back down to 150mcg. I'm really small, so I guess size doesn't matter in this case😊

There is no point in me trying to fit my symptomless self into 'normal' blood tests...it just wouldn't happen. The whole time my GP and endo had my thyroid blood tests 'in range' I was completely debilitated and mostly bedridden, supposedly with ME/CFS. I haven't had any output from my own thyroid for 25 years, so I don't expect there's any T4 in my bloods at all, but personally, I feel fine.

I have probably always had a thyroid issue, but in early life the symptoms weren't too bad, and I just thought it was 'how I was', and I had a normal life, but after accidental exposure to a vaccine, I became seriously ill and hospitalised for a long time.

It took them a while to realise my thyroid had no output, and then I was given Levo 200mcg. It never really made me well, but I struggled on with the migraines and joint pain, while they increased doses up to 300mcg. This made me really ill, and I begged for a reduction, which they agreed to. It didn't even make much difference to my blood levels, but I strangely always felt better if I forgot to take it and missed a dose.

It was actually after a prolonged period of severe emotional stress that life became completely unbearable, and I couldn't function at all. I believe that was the final straw for my conversion/resistance problems. I read that it can happen that way, and I'm sure that's what happened to me. It's a great pity that medics don't understand these things...I could've saved myself decades of pain and anguish.

To be fair, in the very beginning, when I collapsed on the beach in Lyme Regis and woke up wrapped in foil (on the hottest day of the year) a paramedic at my side said 'have you had your thyroid removed? I can't see a scar' I said no, but it doesn't work at all' he said 'well I've given you an injection, but when you get home, tell your Dr to change your thyroid meds, because if you're taking them, they're not working' Well I was taking them, so went straight to GP but she said she didn't know what he was talking about, there was nothing else...end of. Thank goodness I found this forum...better late than never.

I think the fact you're able to take 50mcg of T3 and feel better with each increase might be a clue, and I'm not sure your thyroid swelling is necessarily a sign that it needs T4 in particular, but others may know more about this...for whatever reason, mine doesn't, so I don't know. It is difficult to get dosing right whatever you're taking, but it might be worth a try with T3 only. The only problem with it is the Drs and the fits😊 mine does the same thing, despite being incredulous at my improvement, but as I've never had any signs of being over medicated (not even on the 200mcg) I'm afraid I'm enjoying feeling better too much to care. You have to stand up for what you think is best for you, and yes, in some circumstances, those blood tests are meaningless...years ago, we didn't even have them. x

[Murphysmum in reply to Mamapea1]

Wow. Thanks for such a detailed reply.

I am similar to you in some ways, in that I was already diagnosed hypo and on gradually increasing amounts of levo before a prolonged period of emotional stress in my life too seemed to have a dramatic effect on my thyroid. Initially I was having panic attacks (what!, I am the calmest person ever) fainting spells and horrendous headaches. Then I was barely able to get out of bed or string a sentence together.

It took around 6 months of me being barely able to get through the day and repeatedly visiting the dr, getting them to “keep looking” before a gp diagnosed me with CFS. I immediately thought that wasn’t right - I may have been “chronically fatigued” But to me that didn’t just happen, something had to be causing it.

And so my journey began. Like you, I found this forum and I’ve never looked back. Whilst I’m still not back to full health (my muscle weakness, muscle wastage and aches and pains still bother me), I am a million times better than a year ago.

After doing blood tests of my own and starting down the road to recovery, I went private and saw Dr Toft. He trialled a high dose of levo before deciding to trial me on T3. Even then, my bloods didn’t look bad, and even he said he wasn’t sure what to do with me! This leads me to believe I have some sort of cellular resistance. Bloods look ok, yet I have symptoms.

I’ve continued to supplement everything (with one or two patches where I’ve got out of the habit) and was given T3 in March. I set out thinking this was great and I was cured until I hit the 6 week point and needed to increase. And so it has continued.

Like you, I’ve never felt over medicated. If anything, too much T4 makes me really sluggish, like I’m filled with concrete, and it gives me aching joints. When I reduce, it goes. I think that I probably need a little T4 but I have nothing to base that on other than the swelling thing. I have no idea if my thyroid is producing anything now. I’ve been hypo about 15 years. Actually, writing this is making me think maybe I should find out, it might be useful. I’ve never had any other symptoms other than sometimes feeling too hot , yet my temp is ok!

So I’ll carry on doing what I’m doing. My only problem is at some point (soonish) I’m going to have to go back to the endo and discuss it as I currently get an NHS prescription but Boots are now wondering why I request it 5x more often than I should!

If I could only shift the muscle weakness/wastage I would be happy. Hopefully that’ll come when I finally find a level I can maintain. Until then I’ll keep doing what I’m doing and maybe I’ll just learn to go without the blood tests even if it does make me feel a bit like I’m stumbling around in the dark.

Thanks for your reply, it’s great when you find someone else in a similar position. Thank goodness for this forum!

[Mamapea1 in reply to Murphysmum]

Hi Murphysmum ...sorry, I probably went on a bit!😬 I always felt the Levo was poisonous to me, so I suppose I knew it would have to go, although I did try for a while to balance it with the T3, as that would have been easier and cheaper, and of course kept the Dr's happier! It was never going to happen though, and the sheer relief when I stopped it was amazing. I can remember (mainly because of my diary😳) that when I got to 75mcg of T3 only, I knew for sure that I was doing the right thing...symptoms were melting away for the first time.

I had previously suddenly started having panic attacks too that were also out of character, and my cortisol went very low, (I would fall asleep whilst eating a meal, and end up with my face in it) but again, GP's aren't interested, and panic attacks = anxiety = antidepressants = you feel worse!😕 The T3 has definitely helped in raising my cortisol, although I'm not sure what level it is at the moment, but most symptoms are gone, and energy levels/lethargy much improved.

It sounds like you may have to source your own T3, as they will no doubt wobble if you keep requesting more...they don't understand these things. I wasn't even ever offered any, despite my incessant begging, so I sourced my own from the start...a crazy state of affairs, but I'm just glad I'm able to buy it, otherwise I'd be doomed. You'll probably have to do your own tests too...but don't expect the thyroid levels to be perfectly in range, go by how you feel...when you feel well, test and see where you're at. The vitamin tests are important though, and always need to be optimal.

I find for me, the T3 dose takes about 3 days for me to feel an effect, (although some things are almost instant ~ the warmth, etc.) and then about 3 weeks for that effect to be as good as it's going to get, but you may be different. Good luck with it all, and you've put a lot of time and energy into trying to get better, so don't let anyone spoil it for you...keep going and don't be put off by worrying about what others will say. You know your own body and how you feel. x

[Murphysmum in reply to Mamapea1]

No, you didn’t go on at all! It’s great to hear and this reply too is SO like my experience so far.

I’m so tempted just to stop my levo but it’s probably far more sensible to keep reducing.

As an experiment, back in September when I began feeling not so great, I increased my levo as at the previous blood test it had been bottom of the range and had no doubt dropped a bit lower after the addition of more T3. Man that was a mistake. Cue the real ache in my pelvis, sore knees and feeling like I was carrying another me!

I dropped it and felt better. Since then I’ve probably dropped the equivalent of twice as I realised I was probably taking way too much.

I was given a script for antidepressants too (totally predictable!) but never got them. I just knew that was a slippery slope and only likely to mask what was actually going on. I really feel for people who either never find this forum or don’t have the medical understanding to research for themselves.

What you say about timings is the same for me too. Three days for an increase to kick in and 3/4 weeks for me to reach the top of the curve. Then another week or so to think about another increase before I actually do it! With levo I was similar - I felt the effects very quickly but I eventually worked out it took about 12-15 weeks for my bloods to reflect the final result.

Honestly, I’m so glad that you’ve commented - I haven’t really spoken to anyone with quite the same existence as I’m having. You’ve given me confidence that I could actually need quite a high level of T3... whether it’s alone or with levo only time will tell.

Onwards and upwards, eh? 😊

[Mamapea1 in reply to Murphysmum]

I would order yourself some T3 so you have a 'stash' and don't have to worry about the GP/Endo snatching it back. This will give you stress free options, and make you feel more in control of your own health...it's not great to have them breathing down your neck like that, and it must be worrying. Of course we all want to keep things above board, but in my experience, it's not always possible ~ hypo patients that need more than a very small amount of T3 are largely dismissed, unfortunately, often even by private Endos.

There are some things around the forum that you could maybe print out to show them re T3 and resistance, but it fell on deaf ears when I tried😕you may fare better. There are so many knowledgeable people on here to help though...our own Hugh H is wonderfully knowledgeable on the subject, and has excellent advice.

Many members seem to have this condition, so it's obviously not as uncommon as we're led to believe. Some people also seem to do very well on only 75mcg of T3, so I would give that a try to start with, without the T4, to see how you feel after a few weeks...you're already taking 50mcg of T3, anyway. I hope you find answers soon. x