I'm looking for a bit of reassurance. I am on combo treatment and have just reduced my Levo (even though my last test shows my FT4 below 50% range) because I wonder how much good it does me as I've never felt well on it, very stiff and sore. I've now compensated for that drop by adding another 5mcg T3 to my day. I am now taking 30mcg a day of T3 and 100 Levo.
I see people on here doing well with adding 5 or 10mcg T3. It scares me that I'm now on 30mcg. It seems such a lot. What do others in a similar situation find they need? I'm stressing about it and what the endo will say in May.
I have a Dio2 positive test for one parent.
My last blood tests were end of Feb, I'm due more soon before endo visit. Test carried out as recommended on here re gaps for Levo and T3. I know there was plenty of room for increases and reducing Levo seems daft, expect my legs don't hurt as much now.
Dose at time was Levo 125 and T3 20mcg.
TSH 1.76 (0.27 - 4.2)
Free T416.3 (12 - 22) - 43%
Free T34.63 (3.1 - 6.8) - 41.35%
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FancyPants54
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You need what you need, where both T3 and T4 are concerned, that's all I can say. And, it's really not helpful to compare yourself to others. There are so many variables, what are the chances of ever finding anyone in exactly the same circumstances as you? Just about zero, I would say. So, don't fret about it.
I take 75 mcg T3 only. But I don't know if I have the DIO2 snp because I can't get tested, here. And the size of your dose has more to do with absorption, anyway. If 30 mcg T3 is what you need to make you well, then 30 mcg T3 is what you should be taking.
I didn't want to compare myself. Just wanted to know how many of us might need the higher doses so that I don't feel so "out on a limb" really. Hypothyroidism which doesn't respond to what the GP thinks is "normal" is a lonely place to be. Add to that persistent atrial fibrillation that nobody seems to bother about either, doubly lonely. Friends won't ask how I am and if I try to talk about it they change the subject. Yet I've never gone on about it. I used to do so much to help them with things. I resent that lack of interest or care.
I have the Dio2 variant from both parents so conversion is further impaired.I also have a type of thyroid hormone resistance....discovered by personal research and support from experienced members.
I now believe I've had this problem all my life. My T3 serum levels do not reflect those in my tissues so I need a supraphysiological dose of T3.
At one stage that was 200mcg but after a few months this caused symptoms of overmedication and I have slowly lowered my dose to 75mcg.
I gather the high dose "wakened up" T3 receptors which meant I needed to take less hormone to achieve (improved) cellular uptake
Cellular T3 cannot be measured.
Reaching a therapeutic dose was basically trial and error which took a long time....luckily someone warned me of this possibility when I first introduced T3 otherwise I may not have reached the end of a long difficult thyroid journey.
I had reached the age of 70 and I could barely function, my health had been slowly declining for decades....probably most of my life. Medics suggested FMS, CFS, IBSand the list goes on.
I fully understand what you mean by it being a lonely place, I was constantly tired (or tired easily) and my body ached with increasing intensity. I've been fortunate to have a hugely supportive husband and sons, but people slowly disappeared from our lives.
I agree with greygoose, she helped me! I know have acquaintances rather than friends. People just don't want to know. I don't look my age and people say "but you look well" and change the subject. I spent years wearing a virtual happy mask when I had to venture out which fell off when I was safely home again.
This amazing forum has helped me find the answers which medics could not and at 75 I now function reasonably well but still depend quite a lot on my husband. Without T3 I'm not sure I would still be here. Too many years with low T3 have taken their toll but life is better now.
I self medicate, medics are not amused but their lack of knowledge has been my downfall and I refuse to go back to pre T3 days. It's my body and I know it better than anyone else.
You are an individual, what any of the rest of us do is unlikely to be what you need.....you need to take what your own body needs. Listen to it!
Dosing by TSH is not the way to go, research underlines this. Those of us who do not immediately respond to levo ( and most do) are at a disadvantage from the start because medics are clueless beyond that point. I briefly saw an endo ( a diabetic specialist) I think I'd have had more understanding from the vet!!
I suspect you already know more than your endo, we have to learn to improve our health.
Try not to stress over their incompetence!
If you need more T3 then you need more T3! And right now your labs leave plenty room for an increase, just alter one hormone at a time and add low and slow. Is your T3 prescribed?
Ah DippyDame that was good for me to read. You are right, we are not alone on here. But I do find it hard making medication decisions. Too many years of messing around and getting it wrong. Too many doctors telling me it's not my thyroid.
The first time anyone listened to me properly and actually looked at me was when I went to see Dr Peatfield. But sadly he was right at the end of him career by then and although he started me on Armour, he was taken into hospital and out of action for several months at a point I needed his help with the dose that at the time I was clueless about. I was in such a state of high anxiety with no one to help me that I stopped it. But at the start of Armour, for a few weeks, I was feeling great. We were staying in a friend's villa in the North of Tenerife and I remember power walking up the steep hill in the hot sunshine every morning to pick up fruit and bread for our breakfast. It was a lovely week, so I know it's possible, or it was back then, about 6 years ago I think. I've since tried NatureThroid but not found that to work for me. Now I have a private endo who is prescribing Thybon Henning for me. But only at 20mcg a day and I'm already now using 30!
I had got to the point where T4 just wasn't helping. It's never helped. But I was stuck on 125 with wildly varying results. As my T4 levels rose my T3 dropped (usually). I tried 150 a couple of times and just felt that it was wrong. I felt overwhelmed by it. and my T3 would drop a lot so I ended up with worse results. I do wonder what was happening to all that T4. I tried it again a few weeks ago, on the combo treatment. Both my results levels were in the 40-50% through range bracket so I thought I'd try more T4. Instantly just felt wrong. I stuck it for a week and loads of hair fell out (it's still falling out, now I have long lockdown hair that's thin) and I could barely walk for the pain in my legs. So that's why I decided a week later to try more T3 and less T4. Dropping the T4 gave me instant improvement in leg pain for a few days and I felt better in my head. Then the drop obviously affected my T3 conversion more and I felt steadily more and more hypo. At which stage I lost the power to make a decision! But last Thursday I think it was, I forced myself to increase my T3 by another 5mcg a day up to 30, split twice and that helped my brain function quickly recover. Physically I'm still wreaked, but it's early days. I have an endo appointment in May so have to hold this all steady until I've had my blood tests ready for him. It's already too close, it won't have 6 weeks to settle, but I had to do something.
I think, right now, I'm most scared that he won't let me have enough T3 on my prescription for what I need. He's scared of the atrial fibrillation and says my TSH can't drop below 0.5 and I've seen on here how that is often too high for people to recover. I'm not really sure why he's so worried about the AF as it's persistent and never stops. So the worst has already happened on that front. And T3, close to my dose, reduces my heart rate. Which is nice.
Sorry for the essay. Sometimes it's good to talk. Today I have to take Mum for her second vaccination but then she'll have a long list of jobs for me to do, including cutting her grass and I really don't feel up to it. But her gardener got knocked off his bike a few weeks ago and has a serious shoulder injury so he's out for the count. I didn't finish packing customer orders yesterday and Monday we have our annual meeting with the accountant so I'm already worried about not managing everything next week. I was able to continue working all through the last year. I could really have done with furlough!
What a story. Strength and Courage to you. This is very sad that Dr's just don't know/care to know better how to dose patients with the least symptoms or if any. Why must patients need to get to desperate situations and then pay the price?
We are so Blessed to have this Forum and help one another.
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