Hi there, I've posted a few times about my ups and downs since starting a T3 only trial last July. After some good advice about going to fast I've been incrementally working up to 50mcg (split 20mcg at 8am, and 1pm and final 10mcg at 5pm). Been tolerating well and getting good results but very suddenly this week began to feel overwhelmingly weak and tired. I added a further 10mcg at 8pm two days ago and so far there's a tiny improvement but still so weak. I previously I haven't tolerated 60mcg for very long before I get palpitations and resting heart rate of 110bpm. So this is new. Brand is Thybon Henning and always has been. Last tests were 19/10/2022 on T3 50mcg tested before morning dose, TSH Was 0.84 (0.3-5.0), T3 was 4.4 (3.1-6.8) and T4 negligible at 0.5 (12-22).I have tests booked for next Wednesday and see my new consultant in a week. I realise it's best to try to do nothing new till then but I'm really struggling. I agreed with my GP not changing anything was best but as a plan B I could experiment adding some T4 back in if I really wanted to.
What do you think? Is it common to suddenly start to feel weak after a while on T3. Should I grit my teeth and lumber on for a week to get a new test and medical advice or chuck 25 to 50 mcg levo into the mix? As I type that I realise probably a terrible option. Ps still love how mentally alert T3 makes me. Any advice, suggestions or experience really appreciated.
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Hashiboy
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I'm interested in the responses to your post. I've systematically dropped my Levo since October and now taking just 1/2 grain of NDT and 30 mcg of T3. It's probably going to take another month or so before the T4 is completely depleted from my previous Levo dose. I'm trying not to increase too quickly but my face has swelling and I'm quite weak, now mentally slower since dropping the Levo. I finally bought a Fitbit on discount and wearing as of this morning. On Levo my heart rate is in the 70s but since going T3 it's in the 80s and 90s resting but when I stand it's closer to 100s. In the morning it's in the 110s. Despite feeling weak and not very well it's amazing that I can be underdosed on T3 and not have the terrible symptoms while being on a full dose of Levo. I've also thought about adding Levo back in but each time I feel worse and it gives me pain and seems to affect my conversion negatively. Looking forward to the replies you get!
how comes you have added t3 into your NDT? It it not is usually added in as the potency of NDT is much higher than synthetic. I have been on NDT for years but just came off it a few months ago as my heart couldn’t take anything over 1 grain. I get high resting rate of 110-120 on armour as well. I am now on separate t3 & t4. Have to admit I am missing the energy the NDT gave me
I was trying to leave a little bit of NDT so I'd have some T4 but it didn't work out so today I went T3 only. NDT didn't have the correct ratios of T4 and T3 for me so I added more T3.
ah I see that makes sense. It has too much t3 for me so I had the opposite issue where I had to add t4 in but then got to a point where my t4 was still low and t3 was over range on 1 grain armour and 50mcg t4.
I really wouldn’t throw Levo into the mix with an appointment coming up, though I know how tempting that must be. You’re guessing at the reason for feeling the way you do and there’s a chance it’s nothing to do with your thyroid hormone replacement dose.
You could just have picked up a bug.
You could have low iron.
You could have low Vit D.
You could have low B12. Or folate. Or something else.
Or yes, it could be that you need more liothyronine but it’s too soon to know.
Dose increases take time to take effect, even when it’s T3. Everyone thinks of it as fast acting with a short half-life. While that’s true, it takes a few weeks for the effect of a dose change to fully set in at a cellular level. 2 days isn’t very long.
I know how rubbish it is to feel so under the weather. But if you change anything now you’re going to skew your blood test results and muddy the waters.
Reading back through your posts, you were still taking some levothyroxine a month ago. When did you stop taking it? If you dropped the T4 shortly after you posted last, you’re probably now beginning to feel the impact of not having it it your system any more. It has a longer half life so takes a few weeks to wash out of your system. It will have been doing something, even if the overall effect for you was negative.
Yes you are right Jazzw thanks for taking the time to reply. I tried adding 25 mcg T4 for about four days and dropped the T3 to 40mcg. It was a bit of a disaster, I hit by severe anxiety and fall down flat fatigue. I think it was dropping T3 before the T4 had time to do anything. I got back on 50mcg T3 within less than a week and dropped the T4 and have been trying to stay on a consistent 50mcg T3 till I see my endo next week. This week I started to get so weak so have upped to 60mcg. Problem is I know that's not a long term fix cos I'll end up with racing pulse etc. So I was wondering whether to try adding T4 again but this time keep the 50mcg T3. But as it's only a week till I see an endo I know it would be super stupid to start ad hoc changes. Overall I like lots about T3 but it's been a bit of a rollar coaster from feeling over to under. I have tried the Paul Robinson approach and monitored pulse, temp and BP across a few days but never really cracked it. I didn't even start out as a T3 only enthusiast, I saw a private endo who was quick to suggest it, now I think it would have been better to go much slower and fully explore combination treatment. The private endo has now left the UK and I'm back with an NHS consultant so I'm imaging they'll suggest reintroducing T4 and cutting T3 but don't know for sure.
I think the thing about Paul’s method of taking T3 is that not everyone needs to do it that way. There’s a few people here who don’t bother even dividing their T3 dosage—they take it all in one go at the same time each day with no ill effects. I think Paul’s method is probably more for people who struggle to get started on T3, perhaps after years and years of just not having the right stuff in their systems and being in a terrible place when they start T3.
The key with T3 is to make gradual changes over a period of weeks to months—raising any more than 5mcg at a time causes problems for lots of people (same goes for dropping the dosage too!). And some need to make 2.5mcg changes at a time. T3 works best when everything else vits and minerals-wise is optimised too—ferritin for example is a key one. Anaemia seems to make it difficult for the body to tolerate larger doses of T3 (which you’ll need if you’re going to do T3 only). A racing pulse can be the result of that—how are your iron levels?
And hey, you might have been ok on combination treatment, you might not—but I think that as you’ve come this far, give it a bit longer so that you can get yourself well before changing things again. Your body needs a break from all the switching around, it’s craving stability—give it some! Stick to the dose you’re on now and see how it goes. If it seems a little too much in the coming days and you really don’t want to wait, drop it a little (but only a little—drop it by 5mcg at most). If it’s reassuring at all, a full replacement dosage of T3 (when you don’t take any Levo) is considered to be somewhere in the 60mcg a day region (though we’re all different and some need a bit more, some less). The point is, it’s not an excessive dose.
Try not to get obsessive about blood pressure and pulse rate (I know, easier said than done). That comment about taking off the Fitbit was for you, not Jbarnes.
If you feel a bit wired, take a couple of paracetamol and try watching some comedy—it’s going to be a bit of a rollercoaster to start with. Obviously if those wired symptoms persist you might need to consider dropping your dosage a bit (but only a bit).
I recall reading some of your previous posts. If you live in a ‘No T3 zone’ which I think I recall you do, expect your advice from endo NHS or even private to be suspect. Apologies. The advice here is from truly knowledgable people who have experienced the process first hand and work alongside you to get you better. We rant a bit about our experiences - sure, but it’s all about getting better. My sense is you have put yourself through some scary stuff recently wanting to move things along. A lot of us have made that mistake!
I’m on t3 only and have a high heart rate but would prefer that than the way I felt before.
Really concerned about the way you keep chopping and changing your doses. I find it takes a number of weeks for the effects to settle down and even then I need to stay with it to confirm that the dose is working to make me feel well.
Hi Kandahar thanks for the reply. For me the T3 only has started to leave me weak and shakey as well as unpleasant high pulse. I know what you mean though about preferring to accept that cos there are definitely improvements to my mind and body compared to T4. Not sure if your reply was for me or jrbarnes but thanks it was helpful to be reminded about the need for consistency, apart from a few days of adding in some T4 a few weeks back (ended up feeling awful) I've been on 50mcg T3 since early October. I'll stick with that until I see my consultant and resist the unhelpful impulse to jump the gun and make as hoc changes.
Sorry not trying to hijack anyone's post! I have T4 storage from my previous Levo dose. I'm trying not to increase T3 too hastily although the swelling was quite severe so I had to raise a little. Last year I tried to go T3 only and the T4 depletion was miserable as it is now. I don't doubt I need some T4 in the mix but when I try to combine the two it causes me issues.
I started off with great iron serum. Ferritin was close to 50. Then I increased calories and gained some weight, which put me into a state of hypo for several months, which then led to me developing an iron deficiency. My Ferritin dropped to 19 and serum iron bottom of range. I did Thorne iron for a number of months to bring it back up to a sufficient range until I didn't feel dizzy anymore. Ferritin was last in the 50s so still a little ho-hum. Hopefully going on the T3 only will stop the heavy cycles so I can get that Ferritin up and keep it there. Today I completely dropped the T4. I was only getting 19mcg T4 in that 1/2 grain NDT but it was still causing me issues. I was trying to take 20-25 mcg T3 in the morning but today starting with 10mcg and noticed my heart rate is a little lower and I feel more comfortable. I'm much more functional this morning. Until the T4 is completely depleted I'll probably just stick with 30-35 mcg T3 split 3-4 times per day. I'd love to add some Levo back in but like you said some people just don't get on with it.
You may find the following link helpful. It is from one of TUK's advisers but he had a bad fall that caused a brain bleed which caused his early demise. He is still badly missed.
I will give you a link to his site for information. Thankfully it hasn't been removed.
I have followed his advice for a long time now and feel well and am symptom-free. I take a low dose of T3 once daily with one glass of water when I awake t but he took a higher dose as his body was 'resistant).
25mcg of T3 is approx equal to 100mcg of T4.
When I took levothyroxine I had constant severe palpitations. and many overnight recording of heart checks and even the cardiologist couldn't figure out why these were happening and was considering putting an implant in my heart to 'see what was going on' but since I took T3 the palpitations resolved and needed no more T4 .
I now take T3 alone and have no palpitations.
This link will probably have sufficient links for you to consider.
My dose is 20mcg daily (or 25mcg) and I take it when I awake with one glass of water and wait an hour before I eat.
I feel well and am symptom-free with T3 only. I have taken a higher dose in the past
If you want to draw a member's attention to your post put an @ sign before their name and similar names may appear. Click on the one you want as you may get a list of similar names. I hope you find a solution soon.
Gosh, shaws that really is quite a modest dose, I always thought you took quite a bit. And thanks for the well wishes, hope you continue to have a good outcome too.
Thyroiduk had a scientist/doctor/expert on T3 as an Adviser. His name was Dr Lowe and he was also an Adviser to Thyroiduk.org.
Unfortunately he had a bad fall that caused his early demise. He was a genuine/knowledgeable expert - especially in the use of T3.
As a young man some members of his family took their own lives so he was fully aware of the effect it had on the families. I believe that's when he discovered the action T3 had in our bodies especially the brain.
He took his T3 in the middle of the night so that nothing could affect its uptake. He stated that one daily dose could last up to three days. I trialled this by taking my T3 dose - none on day 2 and none on day 3. I still felt well.
He also stated that T3 had to saturate all of our T3 receptor cells and that one dose then sent out 'waves' for up to three days.
Dr.John Lowe took T3 himself and he took one daily dose when he awoke during the night. He stated that this dose saturated all of the T3 receptor cells.
To do so enables all of our T3 receptor cells to be 'flooded' and thereafter sends out 'waves' throughout the day and effect could last up to three days.
I trialled this myself and took one dose of T3 and and none on day 2 and 3 and still feltl fine and symptom-free.
I now take T3 with one glass of water when I awake and wait at least one hour before I eat. feel well and am symptom-free.
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