Latest test results are in. I raised my dose to 20mcg T3 and kept 125mcg Levo after my last results (in my profile). I have been feeling really exhausted. I had wondered if my T3 level was too high because I felt worse than before. Not helped by the hardest and busiest Jan/Feb ever! I have no physical energy at all. I tire quickly and my joints hurt. I have had a lot of problems with my left arm/elbow, really painful and weak. I am also menopausal but on HRT.
But looking at these results I'm wondering if now I've added T3, I am finally seeing (after years) my TSH down to more normal levels, which has dropped my own thyroid production further?
My results over the years have been very upsetting and out of control. At least now I know I have some T3 that might stay level (I have Dio2 gene defect).
What do you think I should do next? Raise T3 or T4?
125mcg Levo + 20mcg T3, (t3 dosed twice a day.)
TSH - 1.76 (0.27 - 4.2)
FT4 - 16.3 (12 - 22) = 43%
FT3 - 4.63 (3.1 - 6.8) = 41.35%
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FancyPants54
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Is this continuing lack of improvement, in fact a noticeable reduction in health, linked to my falling TSH? I've been used to a TSH at the mid-top of range, or just over, for years. Now it's falling does that mean my own thyroid has lowered production hence the lower results?
TSH - 1.76 (0.27 - 4.2)
FT4 - 16.3 (12 - 22) = 43%
FT3 - 4.63 (3.1 - 6.8) = 41.35%
Taking exogenous thyroid hormone replaces thyroid hormone that your body doesn't make enough of. So you wont be making your own thyroid hormone therefore you need to take enough replacement hormone for you to feel well.
When taking combination hormone replacement, some people are fine with a lowish FT4 and some need it higher in range, that's for each individual to find out by trial and error. As you don't yet know where you need your FT4, and the fact that your FT3 is low in range (most people need it in the upper part of it's range), then I would increase your dose of T3 at this point. Retest in 6-8 weeks to see how things have changed.
From your profile, it looks like your last nutrient test was early 2019. If so, I'd be inclined to test your nutrients again now. I do mine once a year and for Vit D twice a year, and because I'm trying to raise ferritin level I'm regularly keeping an eye on that at the moment.
I have put my actual results into my post now! What a fool to forget them.
I have had other full tests. One in December. I just haven't written them up. My endo is helping me to raise them so I'm active in that department. Mind you, I've been working on raising them for years. They are stubborn.
They're not there, not sure what's happened but I took them from your profile so nothing further to add about your thyroid results
It might help to post your nutrient results and what you are taking for those though, doctors are notoriously bad at anything to do with nutrient levels.
I don't know what happened there. I can see them now though, so they should be visible.
I am happy that I'm doing the right things and aiming for the right results vitamin-wise, based on your past advice. This endo is aiming for the same results too. I'm really tired today and trying to pluck up the energy to go to work. I can't face typing up those results.
If you were me where would you add another 5mcg T3? Morning or late evening? I'd prefer morning as I often work late and therefore eat late.
My vitamins are tested each time I see my endo. Last done in December and next due in April. I am aware of where they should be and actively trying to get them there.
I don't know whether to add in some more T3 or T4.
My understanding is that when taking T3 & T4 the only levels you need to concern yourself with is Free T3/Free T4, the TSH is irrelevant and will continue to drop when you increase either dose. Endocrinologists are obsessed with TSH levels. I was told 175 mcg of T4 was too much because my TSH was below 1, but it turned out I have the DI02 gene and cannot convert adequately. He had to eat his words. He never tested Free T3 when he did it was on the floor! I am still trying to get my levels correct have zero energy like you. My T3 is 44% through the range but Endocrinologist says I should have a good response. He needs to be in my body for a day, he would soon change his mind! Sadly from what I hear NHS won't go above 60 MCG because of the cost of T3. Same old story.
This endo is private only now and isn't as obsessed with TSH for normal people. But he's said I mustn't go below 0.5 because I live with persistent atrial fibrillation. I'm not there yet, I hope I feel better before that level so I don't have to fight. I'm on 20 T3 a day at the moment.
My GP said my thyroid was fine and it must be something else leaving me so shattered all the time. That was before I started T3. He also refused to look at the Dio2 gene test results. Just said he didn't understand it and pushed it back at me. When I asked what else it could be he didn't know. Hopeless.
The lack of energy is a killer. I can't be bothered to move. And if I force myself everything hurts and I'm worn out in an instant. My T3 is now 41% through the range. I know just how you feel.
I too have Afib controlled by medication. What I would say is persistent Afib will exhaust you and make you feel unwell. Can you get that under control? That way you can increase your T4 and T3 to nearer the top of the range. Your Endocrinologist is wrong about your TSH not going below 0.5, mine is 0.4 and will be undetectable eventually. Interestingly my presentation 20 years ago was Afib, hypothyroidism and anemia. If your thyroid levels are not right your Afib will be worse actually. I know it's a struggle because Endocrinologists associate Afib with hyperthyroidism so don't want undetectable TSH but the TSH is irrelevant. TSH is about telling your thyroid to produce more or less T4 thyroid hormone but you can't produce enough T4 anyway and you can hardly convert it. You have to rely on hormone replacement, your thyroid won't produce it much anymore it's broken and cannot be fixed by looking at TSH if you have primary hypothyroidism. I hope that makes sense.
I'm in persistent Afib, but I barely feel it. I can't feel it now. There might be a few times a day when I am more aware of it, but it's nothing like the awful beast it was when it came out of the blue for 36 hours or so about once a year. That was awful. Once it went persistent I was put on beta blockers and an anticoagulant. My pulse runs fast. I don't think it's that which is making me tired. After a year of it I had a cardioversion and it was successful for a few weeks. But the pulse never came down. I was able to stop one of the two beta blockers though. When it slipped back into arrhythmia I never noticed. At some point I had an ECG and it was back. Cardiologist isn't bothered about doing anything.
I have a review coming up. Last one was cancelled. One before he didn't have any of my test results on the phone! I think I'm going to ask to see an EP this time. Just to see if there is something else we can do. But I'm not keen on going onto the harsher medicines when it's not bothering me.
My GP won't give me T3. So this endo is my only hope for that. So I am kind of bound to what he will and won't do.
I hear you, but you need to see a sympathic Cardiologist. I am on Flecinied low dose and low dose beta blocker. It helps keep me in sinus. I have refused an Ablation operation for my heart because I know it's just my thyroid that is at the route cause. I have had two cardioversions, now I pop in and out of Afib but it's all thyroid related. You need a good cardiologist working with a Endocrinologist. Look for hens teeth! Your thyroid will eventually damage the structure of your heart. It did mine being left hypothyroid for over 20 maybe more like 30 years. Before your heart gets damaged. Get referred to a Cardiologist that understands the DI02 gene and wants to listen. That is how I got my NHS prescription for T3 not the Endocrinologist be lied to my face. The Cardiologist will not ignore the DI02 gene.But you need the right one. You need a referral from your GP for both Heart and Endocrinologist. Going private they will wash their hands of you if you run out of money. It's a long haul with the NHS but it's better in the end.
I don't have a choice of cardiologist. It's a provincial hospital. He's the main one. My GP referred me to an NHS endo. I chose to go to Oxford hospital because the main endo. there is on the thyroid UK list. But of course I saw a minion. He was really young. No clue. He discharged me. The best I can hope for right now is a referral to an EP possibly. I will mention the Dio2 gene to the cardiologist at my review.
I am sure the AF is linked to low thyroid. But my T3 has never been out of range low so no one in the NHS bothers. My private endo does bother. He's doing various things to help me. I'm not going to change him in a hurry. But you have given me a few new things to consider, which I will do and try to put into action. Thank you.
You're kinda equally low on both t4 and T3. If you increase your Levo it will raise your t4 and might bring up your T3 too. If you raise your T3 it won't raise your t4. I'd be aiming for an increase in both! People here like you to do one thing at a time, I guess so you can feel the impact of each. I feel I like a high t4 (for good sleep and energy) but you might feel T3 is more important to you. If it were me I'd add in 25 Levo for 2 weeks til I'm settled on it then I'd add in 5 lio. Then retest in 6 weeks.
Oh! A curved ball. I did wonder if raising T4 might raise T3 but I have the Dio2 issue so not sure as I've never had my T3 much above this. I've never got it close to 5 for example.
If I try to lower my T4 to 100 it affects my sleep. As I have no energy anyway I can't tell if it affects that.
I added 5mcg to my dose this morning. Felt anxious for a couple of hours an hour after taking it, but that's normal for me when I mess with doses. Hopefully it will soon settle. Still feel like a lead balloon though. So fatigued. I've never felt good on Levo. I'm wondering if I should take it at night and sleep through the worst of it. Just take T3 in the day. I hate the experimentation aspect of it all. It all makes me feel so ill.
I agree it’s tough, but it will be worth it in the end, once you find the best arrangement for you. Taking T4 before going to bed sounds a plan worth trying.
I've been trying to outsmart my body and it hasn't happened yet. I've always taken 88mcg, which was a little low for me. I tried to add T3 to it and developed insomnia and anxiety so I lowered it to 75mcg with the same results. Then I raised the Levo to 100mcg and the anxiety went away but I developed a dry mouth and throat, cracked lips and extreme thirst. Lastly, I lowered the T4 to 57mcg by taking NDT and added T3 to it. I didn't have any anxiety or dry mouth but my face took on a haggard appearance and my body was weak. I'm not sure how much T3 you have to add to overcome the low T4. I kept adding the T3 and never felt overmedicated but I was up to 28mcg of T3. Personally, the only time I can feel the effects of T3 is by lowering my Levo.
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