short recap: I was prescribed 10mcg thybon henning split 2xdaily and 125mcg t4 by private endo. Requested trial on nhs as I felt pretty well on this dose. Nhs endo dropped t4 to 75mcg and increased t3 to 15mcg. These are morning side. I was always concerned about the large drop in t4 as this has never been high on range. My problem is this week my heart rate is dropping daily.its dropped to 57 average resting but going as low as 50 during the night. I have a phone call with an endo on Monday.
I'd like some advice before this conversation. Do you think it's the increase in t3 or the decrease in t4 causing the problem?I have no obvious symptoms of over medication.My fatigue is back and I'm getting that horrible "wired" feeling in bed at night where you're not getting proper sleep. (Not weather as not hot here...yet)
thanks in advance.
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BiscuitBaby
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HiThat was quick...thank you. I've only been on decreased dose for about 4 weeks. I take Thorne basic complex. I did the vitamin test in March. Folate was low but in range. Vitamin d was low. B12 good. I increased the b complex for about a month and dropped back to 1 a day. I am taking 4000 iu vitamin d with k2. I was feeling pretty good on previous dose. I'm just concerned that endo will tell me I'm "hyper" and stop the t3!!! That was what he kept telling me during the horrible appointment!!
I think that’s where my trial went wrong last year. My levo was dropped to 75mcg and I felt terrible. It was uppped but I never really felt much better until I dropped the t3 and concentrated on raising my ft4 and now I take 150mcg levo three days and 4 days of 125mcg. I have never taken this higher dose before and have done this since January and felt so much improved. My ft3 was still low so now I have had t3 again. 5mcg twice a day. Early days for me but I definitely do not feel like I did last year at all.
I would add that I self source as I can only get 100mcg through the endo 🙄 and I am careful what I say now. Luckily he allowed me to trial it again but I self sourced some t3 too so if they take it away then so be it. I refuse to let them dictate and control my health any more. Good luck.
Hi Thanks for your reply. I think that's what's happened. I think my t4 is now too low! I am concerned that he will declare a failed trial as I appear to be worse but I was OK on dose prescribed by private doctor!! That's why I need dialogue with them sooner rather than later. I apparently only have 3 months. Think I've got another fight on my hands to extend this!! 3 months not long enough. Before t3 I was on 150mcg t4 but my t3 was in the bottom of the range. I hate that doctors are in charge of my body. It's so hard to have to keep fighting your corner just to keep good or even halfway decent health!
I sympathise. It should be that they know what makes it all tic.
I’m assuming you know what your ft4 was before this trial and although you must still have been symptomatic to want to try t3, you didn’t feel like you do now?
There is literally a ton of anecdotal evidence to say that many need the correct dose of both to feel better and I know they’re not keen on ‘anecdotal’ but this does back up their own theory of t3 and t4 being needed in cells throughout the body including brain mast cells (read about that more recently lol). Personally I find that they don’t actually know that much about it so I go in confident, unemotional and throw in a few obscure things like that and they either are fooled into thinking I want their job or want shot of me as I’m irritating- probably the latter 🤣.
I wish you the very best with your chat with them.
Those are my results before trial of t3. I was on 150mcg t4. I had terrible fatigue, brain fog, palpitations, poor sleep..the list could go on s you know.
After about 5 months on 125mcg t4 and 10mcg t3 my results were same ranges
12.5 t4
4.2 t3
I felt OK. I had a couple of niggling issues but on the whole I felt better. Lighter, brighter a bit more me. My exercise tolerance improved and I could do more. Still not able to lose weight but the extra exercise made me feel better about myself so that was OK.
Now apart from the low heart rate, my poor sleep has returned and the fatigue and sore feet. They had stopped being sore altogether!!
I trued to go in confident and unemotional but the man talked over me and couldn't be less interested in symptoms if he tried. He was horrible. I spoke to pharmacist last week. She told me to fight my corner and ask for a second opinion. She had had to speak to him to get my prescription changed. He had told me to cut my tablets but pharmacist was worried that I wouldn't get a therapeutic dose. She also said that she wasn't concerned about the cost as she sees so much unnecessary prescribing and she viewed the t3 as vital!!! Go her! Anyway. She didn't like him either I don't think!!
I’m not surprised she didn’t like him. She was doing his job!!
I can say that when I started t3 last year on reduced levo my ft4 dropped to 9 (12-22) yuk yuk yuk. I think I got to around 15 on 125mcg and varying doses of t3 - up to 25mcg. Still yuk. Back on levo only and got up to 17 I think (around 50 - 60% of the range and felt so much better. Over this level and back to feeling crap again.
I can say that last year, for the first 3 - 4 weeks on t3 and I had a period of feeling better. Even the blurred vision went. Then I fell like a stone. Pain (main symptom) my joints slip, and could have laid in bed sobbing all day long.
Now adding in t3 and feel a bit worse. Will be having bloods in a couple weeks and think ft4 has dropped.
So I would feel awful with a ft4 of 13 or 12.5. But I think if I were you I definitely would have tried increased t4 first rather than go for t3. Your t4 is still low but your t3 doesn’t look so bad for such a low t4. Do you have any food intolerances? Do you supplement?
My ft4 has never been high. Apart from the first test after adding t3. It rose but dropped again. There was very little difference in my t4 from when I was 75 to 150. My symptoms were less but not gone. The doctor aa usual wanted to drop dose when I was on 150. I still felt unwell. That why I went to private endo. She looked at past results and thought there was little point in adding more levo. My tsh is suppressed on this dose so clearly I'll not be getting t3 directly from thyroid. I definitely feel better from the addition of t3. Its like night and day for me! Its just this recent drop and the nhs endo that has stuck a spanner in the works. I have no food intolerance. Tried gf but no benefit. I take b complex vit d and eat a couple of Brazil nuts a day. If I remember. Don't really like them so I don't do it every day. Pity you don't get selenium from toast. I'd eat that all day!!!
Lol I’m not a nut fan either but toast?! You have to love a bit of toast.
I’ve seen other people not be able to raise their ft4 even taking large amounts. Obviously something happens within the body to stop it. 🤷♀️ Do you think maybe it’s a balance of them both for you? Raise your ft3 and then maybe you might see an increase with ft4 if you could get raised dose of levo? Just a thought.
My dose now is 150 x 3 days for levo and 125 x 4 days. I take 5mcg lio twice a day too.
I take selenium, b complex, b12, vit c, vit d, magnesium. Like most I find it a juggle to get the timings and some days skip the odd dose of something. This road to wellness can be tricky but worth it. I have even started power walking 3 times a week with a half mile jog at the end. Never thought I’d be back to that. Ever! Admittedly it doesn’t come without its cons but I love the feel good factor that I’ve actually managed it. There’s hope right there! 😊
Yes....got to love toast. Given that I felt good on 125 and 10 with a smidge of room for improvement i think my dose could be close to that. Maybe 100 with 15? I'd really just like a bit more autonomy with an endo to experiment. I'd like 15 prescribed but I maybe wouldn't need it with higher t4? That would give me wiggle room. I know how you feel. I got back to the gym after introducing t3. Was even able to try running again. I'd love to get back to running again. Might not happen. Not even aiming for long distance now. Would be happy with 5k a few times a week. My recovery was so much better when I started t3. That's how I managed to increase activity. I'm really pleased you're getting out and power walking again. That's a huge achievement!
Oh it is huge. I have always loved being active. Used to sleep, go for a run, sleep. Stupid really but I just loved the feeling so I really hope you manage to get back to it. I never thought I’d walk so fast for so long again so I’m hoping you get there.
Autonomy would be nice but if I’m honest it feels like you only get that if you don’t tell them the whole truth and self source as well. I tried for more levo but can only get 100mcg from endo. I’m going to ask for another 10 at my next appt. I’d be happy for another 5mcg to try but if I don’t go big I doubt I’ll get anything and I’m determined to get as close to 100% as I can now.
Let’s face it with a ft3 of 4.2 you still have scope to add to it. Just tell them you’re still symptomatic on 10, your bloods speak for themselves so you would like to try the extra, would be foolish to stop now. Put it back on him. When they starts on about tsh tell them you only want to try it. It may not be long term if you feel it doesn’t help. Remind them it’s a trial and surely this is what happens on a trial or what’s the point? I do wish you luck 🍀
Thank you. I hope you get back to near 100% too. I used to love the feeling when I came back from a run. I used to feel cleansed! I tried to keep doing it in the early days. Particularly before I found this forum. My doctor then kept saying I was fine so I thought it was just fitness I lost! I know different now! And I was only on 50 and feeling dreadful. I kept kind of thinking I'll feel better if I'm fitter and less podgy! I feel so different from then that I'm kind of itching to get back to it but I don't want to overdo it. Particularly if my heart rate is as low as it is at the moment. Too warm to run. I love to run on a frosty cold morning. That was my favourite thing to do! I so hope you get back to where you want to be. Thank you for your replies!
Why did your NHS Endo change your doses if you were feeling well splitting your 10mcg ThyBon Henning a day and the amount of Levo you were on. Sounds like the private Endo got your dose right and the NHS Endo has messed things up for you???? Can you get another consultation with your private Endocrinologist and go back to your original doses. You may be able to source the ThyBon Henning again. Or you could ignore your NHS Endo advise and go back to the previous doses regimen that you felt better on.
I take ThyBon Henning 5mcg twice a day and 68mcg liquid Levothyroxine split twice a day. I’ve never felt so energetic and youthful in years of struggling with just Levothyroxine. I’m a poor converter. I exercise most days by brisk walking. I’m 63 and don’t want to run but feel I really could. I’ve got covid at the moment, day 9 still positive, so that’s put a stop to my brisk walks unfortunately. I’m hoping in a few days I’ll be back to it. This covid has hit me and my partner hard. I think it’s the new variant.
We are all different but for me I feel good when my T4 is in the low half and my T3 level is midway. My TSH is never suppressed. In June this year my TSH was 0.93(0.35-5.50). I also get Morningside but haven’t tried it yet as I’m still on my private ThyBon Henning. I also lost over 4st now I’m medicated properly without even trying. I guess my metabolism is working as it should.
Hi McPammyI don't know why he changed my dose. I told him I was well and he told me it was because I was hyper! He is trying to get my tsh back in range but it's been suppressed for ages. It went suppressed when I went on to about 125 t4 but I still had symptoms. Don't think the endo is going to achieve his goal. His goal is more important than mine!! I have an endo phoning me Monday. I am entitled to a trial of t3 and I have fought hard to get it! I will go back private again if his trial fails but not without another formal complaint! I'm really happy for you that you can do what you want and maintain your tsh. I can't fo whatever reason. Maybe you should send me your bloods to submit!!! 😂 if only that would work. Sorry you have covid though. I really hope you feel better soon.
I achieved my in range TSH by lowering my Levothyroxine as low as I could without effecting my energy levels. I haven’t changed my T3 dose. My T4 hovers around 10 (7.5-14.40)and my T3 hovers at 4.5 (3.7-6.00)that’s with not taking my meds many hours prior to the blood draw as is standard practice.
I don’t get it. Hyper has distinct symptoms doesn’t it? I have had those symptoms coming off unnecessary heart drugs. It is extremely unpleasant. Tired but wired. Nerves jangling. Sweating. Walking the floor for hours until it finally passes. Do these twits think this is what we want? Is this what you are reporting? It does not sound like it to me. You sound like you have been ambushed.
No. I haven't reported that at all. Reporting it would have meant I git the opportunity to speak!!! I tried to say my goal is to feel well. Being over medicated as far as I can tell is not to feel well!!! I hate that other people control what happens to me. I'd love it if my body would play ball and everything would slot neatly into their ranges but it doesn't!! There's nothing I can do about that. But I am not prepared to make myself unwell for them. Thankfully I now have the drive to fight for my health. I feel for those who can't. I also think I might be dead if I hadn't found this forum!!!
You did make me laugh about the opportunity to speak. I hope you said that in at least a little jest. If not I apologise and see you are stronger. I too echo your comment about the forum. It’s definitely been a lifesaver for me. Let’s hope we move upwards and onwards.
It wasn't really said in jest! I wish it was. But I'm more able to deal with it now. Knowledge is power. Also I know I can fall back on private prescription if need be. I just don't see why we should have to!!! The forum really is a lifesaver! Glad you found it too!
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