What's happening to the Levo I swallow? - Thyroid UK

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What's happening to the Levo I swallow?

FancyPants54 profile image
24 Replies

I've asked around this question before but still don't understand it.

I am on combo treatment. Before I started T3 a year ago now, my FT4 levels fluctuated a lot, but were often around 60-75% of range on a dose of 125mcg Levo per day.

I didn't reduce my T4 before starting T3 because I was not at the top of the range.

I still take 125mcg Levo a day. Now I also take 35mcg T3 as well.

My FT4 level has dropped (last blood test) to 18% in range. And my FT3 only 34% in range ( FT3 was higher when my FT4 was higher and my T3 dose was lower). I am struggling. I have the genetic defect of Dio2 from one parent.

My lack of understanding is around what's happening to all that Levo I swallow. Where is it? How can it have fallen so low? It's the same dose that gave me 60-75% in range before. I know taking T3 reduces T4. But this seems like a ridiculous amount. Is it converted to something else or do I simply pee it out?

I don't feel at all well (brain is mostly OK but physically I'm a wreck. I'm due a new blood test in 2 weeks. I don't think I will want to increase my T3 further as I'm too hot and my pulse (already ridiculously high with persistent atrial fibrillation (pre-dating the T3)) has increased slightly since the last dose increase of 5mcg.

Do I now simply try to raise the Levo dose?

I desperately want to understand the process of what is happening to the Levo I take. I can't move forward with confidence without that knowledge.

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shaws profile image
shawsAdministrator

Levo is T4 and it is supposed to convert to T3 which is the active thyroid hormone needed in our millions of T3 receptor cells, the brain and heart have the most.

T3 (as you probably know) is the 'active thyroid hormone' and our brain and heart have the most T3 receptor cells. T4 is inactive and is supposed to convert to T3.

"What is levothyroxine converted to?

Levothyroxine (Synthroid®) is a synthetic form of thyroxine, which is an endogenous hormone secreted by the thyroid gland. Thyroxine (T4) is converted to the active thyroid hormone, L-triiodothyronine (T3).

FancyPants54 profile image
FancyPants54 in reply toshaws

Hi Shaws. That's not the question I'm asking. I know all the general stuff. I don't understand why taking T3 has resulted in such a massive drop in FT4 level whilst taking the same dose of Levo every day as before I began the T3.

I'm looking to understand where that daily dose is going now I'm taking T3, because it isn't converting to T3 that's for sure. I am either peeing it straight out, in which case perhaps I should stop taking it. Or it's converting to T2 and T1. Or it's reversing itself. I need to understand that individual process to know what to do next.

greygoose profile image
greygoose in reply toFancyPants54

I'm not sure anybody can answer that question. There was a discussion on that subject on here a while ago which never came to any real conclussions. The fact is, we just don't know.

You won't be peeing it straight out, though, that's for sure. It's a storage hormone, and is stored for about 1 week before unused T4 is excreted.

And it won't be converting directly to T2 or T1, either. T4 converts to T3 and rT3; T3 and rT3 are converted to T2; and T2 is converted to T1.

Some of it will be converted to T3, even if you do have the dio2 gene defect. And, some of it will be converting to rT3, because it always does. But, how much is not something you can know without testing for rT3 - which is another complicated subject all by itself. And, there's not much else anyone can tell you.

Whether or not it's worth taking any T4 at all is a very personal thing. Some people do very well with not T4, others need their FT4 quite high in range to feel well. How high you need it is something you can only find out by trial and error. You could start by reducing your dose a little, and see how you go. :)

FancyPants54 profile image
FancyPants54 in reply togreygoose

My problem is I don't know which way to go. More Levo or less? I have no idea. A few months back, on a lower T3 dose to now, but probably something like 25mcg, I reduced Levo by 25mcg. It too very little time for me to shed half of my hair!. I'd be sat at the desk with it falling out around me. It's really thin now. I'm on more T3 now. But years ago I tried Paul Robinson's method with T3 only and felt much as I do now at the point I stopped. I could hardly walk, which is where I am again. All physical effort, hurrying, walking a short distance, bending and lifting, hoovering, mopping etc all leave me really exhausted. I took my afternoon T3 an hour and a half ago and I'm in danger of falling asleep!

I will have to wait 2 more weeks to see what the results of 35mcg T3 are. But I still won't know which way to jump I bet.

greygoose profile image
greygoose in reply toFancyPants54

OK, so you've already tried a reduction, and it didn't help. So, now try and increase, and see what that does. :)

FancyPants54 profile image
FancyPants54 in reply togreygoose

Yes, that's the logical suggestion I suppose. But I feel worse on 35mcg T3 than I did on 30mcg. I'm much more tired, not sleeping well, hot, BP is slightly up and HR (which is hard to measure as I have permanent fast atrial fibrillation) is up a bit I think. And my stamina is non-existent. So I will see what the next bloods say, but I'm thinking I might need to drop back to 30T3 and try increasing Levo instead.

in reply toFancyPants54

Dare I mention sex hormones?

FancyPants54 profile image
FancyPants54 in reply to

That's all sorted out. I'm on HRT and levels are OK.

in reply toFancyPants54

Paul Robinson, the thyroid/adrenal patient, writes in "The thyroid patient´s manual" that FT4 can be midrange or low in range on combination treatment, and that there is no need to get FT4 high in range where it is more likely to create too much rT3. Even if it is no longer believed that rT3 actually blocks the action of FT3, too much rT3 means you may not be getting enough FT3 from levo. So, you either need to improve T4 to T3 conversion by decreasing T4 to rT3 conversion, or take more T3. If your T4 to T3 conversion is suboptimal, and you need say 50 mcg of T3 daily, then you may not get enough T3 on your current dose because your body is not converting enough T4 to T3 for your needs, and you are only taking 35 mcg of T3. What I am trying to say is that you may not necessarily need more T4, but instead an increase in T3. Exactly where you need your FTs to be is all about trial and error, I´m afraid, as we are all different. But, once on any form of T3, you cannot expect your FT4 levels to behave the way they did on levo only. Taking T3 is likely to lower FT4.

FancyPants54 profile image
FancyPants54 in reply to

But taking the T3 has lowered my FT4 drastically. I just don't understand why.

You say I'm only on 35mcg T3, but I'm so much more tired now, not sleeping well either, and with zero stamina than I was on 30mcg.

I'm due a blood test in 2 weeks. I have enough T3 to raise to 40mcg, but I'm worried about the fact that I feel worse on this level than I did on the last amount.

helvella profile image
helvellaAdministrator

There are several routes for T4. It can be reacted to form T4 glucoronide or T4 sulfate - both of which can be excreted. Or converted to rT3. Control over those processes is a significant part of the whole thyroid hormone management.

Very recently I saw another possible path where the T4 gets split in the middle by an etherase enzyme.

Have a look at Tania's blog:

thyroidpatients.ca/2021/08/...

Make sure you have a couple of paracetamol available before you start. Most of us have a headache by the time we get through. :-)

June25 profile image
June25

I understand your confusion and why you need answers because more or less same thing happened to me. I started on NDT and I was getting great blood results for a while, then on the same dose (2.5 grains thiroyd) my FT4 slowly made its way to under range and my FT3 made its way down to 40% through range. So my FT4 was then less than before I started any meds at all!

It is a well known observation on the forum that increasing the dose of T3 leads to FT4 falling. I've wanted to know for a long time why this is and what happens to the FT4 when it doesn't convert to FT3? The short answer I think is that it must convert to RT3 and on down the line as explained in Tania's blog. Another concept that Tania introduced to me is the 'setpoint' which is the unique ratio that each person tends to between TSH, FT4 and FT3. So the body is always trying to maintain this ratio. Increasing the T3 dose means displacing FT4 to make more room for the increased FT3. It may be that the net result of losing this FT4 is less FT4 conversion leading to less FT3 over time.

This doesn't happen to everybody or we'd hear more about it. It may be relevant that my DIO1 gene has a heterozygous mutation on both snps. Your DIO2 gene is impaired. DIO1 upregulates when FT3 is rising. DIO2 upregulates when FT4 is 50% or under through range. So we can try to predict how to maximize their conversion capability.

Which way to go with dosing? That's the big question which I am still trying to work out by trial and error for myself. I got AF symptoms from moderate amounts of T4 when I tried to increase my T4:T3 ratio dosage. It made me wonder if some T4 didn't go anywhere but just built up to toxic levels and that caused the AF symptoms. I find T4 more difficult to work with when I'm in trial and error mode because of the long wait time both for it to build up and for an overdose to calm down. I'm currently trying a small amount of T4 and increasing T3. You can try to make an educated guess on what will work out for you but in reality you just have to try it.

It's important to keep and correlate all the info you have on how your body has behaved in the past with what dosing. That way you don't repeat past trials that didn't work.

I'm sorry that you are feeling bad and that my reply might not be what you are looking for but it's the best I've got so far.

FancyPants54 profile image
FancyPants54 in reply toJune25

Your reply is good. I'm not sure I fully understand it, and I certainly haven't fully understood Tania's piece yet, but I will read them until I do.

I don't feel terrible, thank heavens. Whist sat down I feel normal. My brain works, my memory is good, I'm feisty rather than supine. I'm capable of working. But physically I can't do much at all. The worst it's been. Out of breath as soon as I try anything and with a horrible back ache that comes on very quickly. If I worked for anyone else I'd be signed off right now. But I work for myself so I don't have that luxury. Business is dire too, thanks to Brexit. I need to reinvent myself and try to come up with other things to sell. But I don't have the physical energy. Then I get really tired in the early evening and onwards (that never happened before) and yet although I go to sleep easily, I'm restless. I've just got an Apple Watch and the sleep recording is showing a lot of restless sleep and out of nowhere I'm having to get up around 5am to pee. Not done that for many years.

My current dose is obviously wrong. But in which direction, and which hormone, I have no idea! Blood test in 2 weeks. I hope it shows something useful.

June25 profile image
June25 in reply toFancyPants54

Presumably you added the T3 in the first place because your FT3 was not high enough on 125mcg T4 for you to feel completely well? You don't say if your FT3 was a little low or abysmally low. With hindsight, it would have been interesting if you had not added the T3 at that point but raised your levo to get your FT4 to the 100% top of the range to see if your FT3 would then have been adequate. That's your simplest solution. If your FT3 were still not high enough for you to feel well then at least you'd know that that path won't work for you, but, as I understand it, you still haven't fully explored what you could achieve with levo only. Your Dio2 is compromised but just on one half. There's still a good chance that your T4 to T3 conversion is adequate and you don't need to resort to T3.

If ultimately you can't get by with levo only then go for the T3 route. At least you'll know which direction you're going in and 2nd time round you'll know what to expect.

FancyPants54 profile image
FancyPants54 in reply toJune25

Hi. This is at least my second go around, possibly third as I've tried NDT in the past too. I've been sick for 8-9 years and trying all the time to find a way to get better.

My conversion isn't good and it gets worse the higher my Level dose goes. On Levo alone I felt worse if I tried to take 150 Levo a day. I've had my FT4 at the top and even over range and the higher it goes the lower the FT3 goes.

I've never had under range FT3, but always stubbornly low in range and not rising with dose increases of Levo.

So I have explored that route quite diligently. Believe me, I'd much rather just take Levo if it would only make me feel better.

June25 profile image
June25 in reply toFancyPants54

Thanks for explaining that for me. It sounds like you have had a very similar experience to me in the sense that FT3 stays stubbornly low no matter how high a dose of Levo. (or for me NDT)

Tania Sona Smith had the same experience with her FT3 and she had to eliminate T4 completely before she got the rise in FT3 that she needed, You can read her story here:

thyroidpatients.ca/2019/08/...

My current thinking on this is that our respective unique setpoints are dictating our bodys' responses. Tania had to get rid of all her T4 before she could get her FT3 to rise. Your body dumped T4 sharply when you gave it some T3, which I think tells you which way it wants to go, ie. you reached your setpoint and your added T3 had to displace your T4 to maintain that setpoint. Same happened to me. I've now reduced T4 to 1 grain NDT (38mcgT4) and I intend to increase T3 until all symptoms resolve, presuming that my body can tolerate it. That's my direction of travel currently. I wish I could recommend it to you but I've yet to find out if this recipe works for me.

One other thing. If you do reduce your levo by quite a lot I'm wondering if your AF symptoms might resolve. My fast pulse and uneven heartbeat were definitely linked to an increase of T4, even though my FT4 was only 50% through range at the time. Why this happened is another part of the mystery for me. I can only imagine that my body couldn't get rid of the T4 fast enough via the Dio3 route, considering that my Dio1 enzymes weren't using it up in conversion to T3. This wasn't a one-off fluke. It happened to me 3 times while raising T4 carefully.

June25 profile image
June25

I've had a look at the results you posted in your profile and the following stands out for me:

- your TSH never drops below 1. I would have expected it to drop a lot lower considering the amount of T4 and especially T3 that you are dosing. I suspect that your TSH may be broken in the sense that it is not useful for diagnosing your current situation.

- the frees in your results from the first test on 75mcg levo alone are better than the frees in your last results when you are taking much more thyroid hormone. You don't say how you felt then but you do say how poorly you feel after all the increases.

- your falling T4 and T3 are consistent with what would happen if you had excess thyroid hormone in your body and it was trying to rebalance by getting rid of the excess. Your AF symptoms are also consistent with overstimulation by thyroid hormone.

Your TSH has not become suppressed, which I would expect if you had been becoming hyper and that confuses the issue, which is why I don't trust your TSH.

The D3 enzyme upregulates on rising T3 and / or excess T4 & T3. In these circumstances it metabolises T4 and T3 at a faster rate. This clears them out and accounts in part for the loss of FT4 and FT3. The D1 enzyme also upregulates on rising T3 and metabolises T4 at a faster rate, also accounting for some of the loss of FT4. As FT4 falls under 50% the D2 enzyme metabolises FT4 more efficiently, thus more FT4 loss.

So, that's the pieces of the jigsaw that I can find. Putting them all together, I think what happened is that your body needed to get rid of the excess thyroid hormone and the mechanism it used was by the way of the 3 deiodinases. Looking at their action in Tania's blogs will tell you how they got rid of your T4.

FancyPants54 profile image
FancyPants54 in reply toJune25

Thank you for going back through all that!

I felt dreadful when I moved up from 50mcg Levo to 75mcg Levo. I had to wait every day for the effects of the dose to wear off. It would melt away by around 5pm and then I was back to normal and could do a days work. Trouble was I was staying at work until 10-11pm. In many ways I wish to goodness I'd never started taking the hormone. I was fat, but I could walk and I could live life. I was in perimenopause back then so the weight issues could have been to do with that. I just didn't realise it and although I was on some HRT at the time (it was the HRT doctor who put me on Levo) it wasn't strong enough to make a difference.

My AF precedes all thyroid meds and my permanent AF precedes T3.

To me it has always felt as if the first time I increase a dose I feel better, sometimes it's been wonderful, for a day. But next day that's gone and over the following 2-3 days it's downhill and then stays there. If I skipped meds for a day when I was on 100mcg Levo only I would feel wonderful for that day. Not so much the next day and then if I didn't resume the 3rd day I'd be very tired and perk up when I started them again. I've not tried skipping meds since I've been on T3 combo. It feels as if a barrier is erected by my body on every dose increase. But it takes it a day to do it. Once it's up I feel more hypo. Does this fit into your ideas?

I just don't know what to do next. I don't believe the endo who told me to increase T3 from 30 up as far as 40 because I wasn't absorbing the Levo. I absorbed it before, perhaps not well, but it was showing up.

About 6 months ago I tried dropping 25mcg Levo off my daily dose to see if the problem was caused by taking too much of it. But after 2 weeks I lost so much hair I was desperate and put it up again. I still have thin and lifeless hair, but although it comes out, it's not coming out at that rate.

June25 profile image
June25 in reply toFancyPants54

Hi and many thanks for this further information.

I'll start with the up-down experience you are having with dose changes. My best guess is that this is a symptom of your body always tending towards it's own unique setpoint. If you dose thyroid hormone or skip a dose then the many moving parts in your endocrine system all rebalance the effect. For example, you might increase T4 but if your body does not like it then your D3 enzymes will upregulate and clear it out and then some, which could make you feel more hypo.

I drew a graph of your FT3 and FT4 test results with the date and the dose.

The first thing that stands out to me is that your FT3 never gets higher than about 40 - 45% and in that range it is higher when FT4 is roughly 50% in range or lower. This says to me that your D2 enzymes are responsible for the relatively higher FT3 as D2 upregulates when FT4 falls below 50%. As you already know but I think it is still worth saying, that getting your FT3 up and into the 60 - 70% range should be the primary goal of your treatment to make you feel better. Despite your Dio2 mutation (which may or may not be active) your D2 enzymes are still doing their job.

- treatment point - keeping your FT4 lower may maximise your FT3.

The other situation when your FT3 is higher in range is when you've added T3.

- treatment point - adding T3 can keep your FT3 higher in range.

The absorbing of the levo is a moving target. How much ends up as FT3 is dependent on how much you dose, if you also dose T3, and the net effect of that of the 3 deiodinases. Your tests show that doses of T4 higher than 75mcg did not improve your FT3 significantly. Perhaps this is what your endo was referring to when he said you were not absorbing the levo?

- treatment point - increasing T4 dosing above 75mcg is NOT EFFECTIVE in increasing FT3. This strategy did not work for you, which means there is no point in your continuing to take more than 75mcg T4. Furthermore, the higher T4 might be putting a lid on how high your FT3 can rise (this part is my speculation).

So all in all, if it were me I'd drop the T4 dose back to 50mcg (because 75mcg made you feel worse) and add T3, titrating up the T3 dose till you reach an optimal level of FT3 and you feel good. If your FT3 still sticks stubbornly under optimal I'd titrate the T4 down until it unsticks, cutting out all T4 if needs be.

I note that you haven't used NDT. I don't know if getting your T4 from NDT might make a difference for you but it's a thought to keep in mind. One grain of NDT has 38mcg T4 and 9mcg T3 and I take one a day. The rest I take is T3.

(At this point I should say that I'm not a doctor and not really even that experienced. It's just that I'm especially interested in researching situations like mine where FT4 plunges and FT3 stays stubbornly lower than optimal, no matter what.)

As to the hair loss, I happened to read through a recent thread (link below) which implicates low ferritin for this person who also had pernicious anemia. See reply by Greygoose. I note that your ferritin is lower than optimal in your labs. It might be worth it to do another ferritin test, maybe even a full iron panel. Having said that, people do lose their hair because of being hypo, but low ferritin is not going to help matters. What will help the most is getting your FT3 higher, and raising your ferritin could be part of the solution for that.

healthunlocked.com/thyroidu...

I'm a bit confused about the AF because your profile says you developed it on 26/03/19 which was after you started thyroid meds and T3. So are you saying that the AF was already ongoing before all the meds but got worse on 26/03/19? So the meds didn't start the AF but may have aggravated it?

FancyPants54 profile image
FancyPants54 in reply toJune25

Thank you for all this! Fascinating stuff. I'm only partially understanding it right now. I'm going to have to read it a few times I think. It is kind of mapping onto some of what Paul Robinson says though. Is there any way you could send me a copy of the graph you made? I love graphs, but can't make them! I keep all this on a spreadsheet but it's dull.

I have tried NDT in the past. It was Dr Peatfield that first started me on thyroid meds with NDT. But although it worked for a day (again!) the second day I was a nervous wreck and although we got it balanced out a bit better for a few months, it all went wrong again for me when he was in hospital for a long time. I had no help and I was a novice so ended up coming off it all together. It's also so hard to buy now. On a private prescription the T3 is currently easy and the Levo is from my GP.

The AF started when I was on no thyroid meds. But as is often the case it just came out of the blue and scared me to death. The first attack was violent but it was in the evening and overnight so I just sat terrified until I could see someone. Then I would have a bout of it every 9-12 months or so. Usually lasting 24-36hrs and being horribly debilitating. There were no obvious triggers. My Dad had it, his brother and sister too. It can be hereditary. I was fit and slim and active and on a good diet. It started after I pushed myself hard in the pool. I had just had the plaster off a broken arm and was feeling like I needed a good workout. I went at it too hard. It started in the car on the way home. I also had legs that felt like lead when I got out of the pool. T3 could have been low. The Canadian site has lots of links to low T3 being just as bad for AF as high. Doctors don't know this though.

I then eventually went onto Levo through my HRT doctor and after a while, because it wasn't working, I got hold of some T3 and started adding that using Paul Robinson's system. I was only on 12.5mcg a day with Levo when the AF just switched into persistent mode, as it often will. The persistent AF is far less debilitating and almost not noticeable most of the time. I much prefer it to the awful bouts of violent AF that I had for a number of years. I am on an anticoagulant and a beta blocker for it. Once it happened, I reduced my T3 to 6mcg + Levo. I hadn't felt better on the 12.5 and I didn't feel worse on the 6mcg and eventually I stopped even that. There were no changes to my AF status without it.

I finally went to see a private endo. who I found via this site. He tried increasing my Levo doses. It didn't work. I did the Dio2 genetic test and showed him my results and he said I must have some T3 and so I started adding it last November and we've been slowly increasing it since then. I have finally understood that he doesn't understand why I'm not improving.

Several years ago now, just on Levo, we were commuting up and down to Scarborough where my MiL was in a nursing home with terminal cancer. It was a heck of a drive. I remember thinking one day that I didn't know how I was managing to do it. I was so poorly feeling and so angry that the next morning I didn't take my Levo. And it was the best day I had in years! My poor husband was getting a cold and felt tired and unwell. It was either November or December and very cold and windy but I just wanted to walk and walk and walk. I was powering my legs along, dragging him along the coast path, up hills. Eventually I had to admit he needed to stop and go back. We had a lovely meal that evening. It was as if not taking that dose just let everything work again. I think I was on around 100mcg Levo a day at the time. Then the following day I skipped again and we were going back home. I wasn't as lively, the next day even less and so on until I had to start it again. Then first day back on, felt better, then back to normal. The changes trigger something. Then my body finds a way to shut it down again. Considering the level of hormones I'm swallowing each day, I should not be looking back with longing to a day that is vivid in my memory as the last good day for years.

Now I'm taking T3 with the Levo I don't know how to try reducing the Levo. I suppose a lot rests on my next blood test next week.

Thank you so much for all your information. I've not really met anyone else on here who has gone through this sort of situation. It makes me feel a freak.

June25 profile image
June25

I've not really met anyone else on here who has gone through this sort of situation. It makes me feel a freak.

When it happened to me it took me a while of much freakout and confusion to find a way forward. When I could eventually articulate what happened I couldn't find anybody who could relate to it, let alone understand it or help me figure it out. It has taken me 4 years of trial and error and searching for answers to get to this point. My biggest breakthrough was reading Tania's blogs. I recognised that my answers were in there somewhere. It has been hard going but I'm fairly confident that the picture I now have is accurate, even if all the jigsaw pieces are not yet in place. I'm glad that this is of some help to you. There are others but we are not yet a recognised 'case study' and doctors are tending to try to put them into other boxes where they don't fit, to the frustration of all.

The thing that helped me the most to interpret my results was drawing a graph, so that's what I did for your results as well. I don't think I can pm a photo or scan of a graph. Do you want me to upload it on to this thread or is there somewhere else you'd rather have it sent? It may take me a few days as it needs tidying up.

Thanks for the explanation of the AF. I was very interested because of my own experiences and also I am learning that others like us are prone to going hyper, even when our frees are not near the top of the range. This is more evidence to me that we have setpoints which are reached with a lower level of thyroid meds than average. Put another way, we are nearer to the overdose cliff edge than the average person dosing thyroid hormone. I'm in early days with this, still a work in progress. In your case I really don't know but I share your intuition that the AF could be related to underdosing of thyroid hormone and/or overdosing.

The changes trigger something. Then my body finds a way to shut it down again.

I feel that this is a key piece of information.

Perhaps the changes are too big. Perhaps there's a sweet spot but it is finely balanced and easy to swing through and miss landing on. If I'm right then it would indicate that smaller dose changes would suit better. Well, experienced members here have been advocating this forever so I think I'm on safe ground with it. This also fits with the 'setpoint' concept. The smaller the change, the less adjusting your body needs to make to maintain your setpoint.

I also remember my best days with poignancy, but it's important to remember how that felt because that's what we're doing all this for - to get them back, every day. I will never give up on that goal.

Now I'm taking T3 with the Levo I don't know how to try reducing the Levo.

When I reduced my levo bit by bit I kept on with my 1 grain NDT and I didn't feel any different. My FT3 never changed.

In your case I'd definitely keep on taking the T3 while reducing the levo because that is what is maintaining your FT3. You'll feel rubbish without it. Contrary to the usual advice to only change one thing at a time, I'd say that if you do go more hypo when reducing your levo, you could increase your T3 to compensate. You are not going to be able to stay the course if you become very unwell. The less levo you take the more T3 you might need. Or you could be like me and not miss the levo at all.

FancyPants54 profile image
FancyPants54 in reply toJune25

The first place I found info about low T3 causing AF was in Tania's blogs. Some of the data collections were impossible for me to understand, but I got the gist of it and went looking and have now found the same evidence in medical journals etc.

No amount of rest is making me feel better at all anymore. I just can't get going. I'm worse on this dose than the last one and much worse than I was this time last year when I started the T3. I have an endo appointment at the start of December. I need that for another prescription for T3. But once my blood test is over next week I will try reducing some Levo. The last time I dropped 25mcg and 2 weeks later my hair fell out. So I might try a 12.5 reduction and if the hair starts falling, up the T3 a bit. I didn't do that last time and ended up so hypo feeling that I put the Levo back up. I wish I could remember what dose of T3 I was on when I did that. I've probably written it down. I should try to find it.

I have been reading the Canadian blog site for some time. There is some great info there. But I find I struggle to understand some of the deeper data because of the way it's presented. So there are things I know are relevant to me but I can't grasp. Oddly I'd like less pictures and more prose.

If you are willing to send me a graph that would be so interesting to see. But don't worry about tidying it up. It can be rough. I will PM you with a way to get it to me. I could then try and replicate it and keep adding my new test results to it.

For me I'm convinced that the AF was always coming anyway. It arrived before any thyroid meds were needed. And that could be that I was running a low T3 naturally. I have always struggled with weight. The thyroid meds I take seem to make no difference to the AF at all.

Certainly I would keep taking the T3 whilst reducing the Levo. How long did you leave between each Levo reduction?

June25 profile image
June25 in reply toFancyPants54

I have the graphs ready to send, 3 pages actually. I've decided to go with one page each for FT4 and FT3, and I've put both the T4 and T3 dosing on the same page. It's less confusing than putting all 4 on the same page.

Do you think you need to check your ferritin, re. your hair falling out (and maybe the tiredness too)?

A 12,5 levo reduction would be better than a whole 25mcg I agree. My levo reduction was not normal because I had to cut it all out at once when I went into overdose and AF around 75 mcg plus my 1 grain NDT. It was after that that I started adding more T3 to the NDT.

Fingers crossed you'll start to feel better as the levo reductions take effect. It's a maddeningly slow process with T4.

FancyPants54 profile image
FancyPants54 in reply toJune25

Thank you! I got side-tracked. I'll message you now.

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