Combo Treatment lowering FT4 Unacceptably - I'm... - Thyroid UK

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Combo Treatment lowering FT4 Unacceptably - I'm stuck

FancyPants54 profile image
53 Replies

I've been on combo treatment since November last year. The endo rushed me in the early stages and stupidly, because I was desperate after trying myself and getting nowhere, I followed his method. I may have missed a sweet spot I don't know.

He told me to reduce my 125 Levo before I began, but I wasn't high so I ignored him. I still take that 125 Levo every morning when I wake (except this past 2 weeks when I've tried night time taking and I hate it!)

I am now 4 weeks into 125 Levo and 30mcg T3. With almost every dose increase I've done, my FT4 has dropped substantially and my FT3 has barely moved. I feel worse each time. And right now I'm barely functioning. I have no energy at all and I am so miserable. I'm not dressed yet and it's 5pm.

Has anyone seen this happen before? This drastic lowering of the FT4? And does anyone have any idea what I can do to feel better. I don't think taking more Levo is the answer. I need to understand why this is happening before I'd do that. Do I need to increase or reduce T3? It anyone wants to see them my blood tests are all listed under my profile in date order, newest at the bottom.

My last blood test on 25 T3 plus 125 Levo (all taken as advised as always) gave me a blood result of FT4 at just 18% of range and a FT3 of 35% and now on 30mcg I feel even worse. The first day I took the extra 5mcg I had more energy and could walk better. Just that 1 day.

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SlowDragon profile image
SlowDragonAdministrator

Perhaps you need to try 15mcg T3 daily……as 3 x 5mcg

The more T3 we take, the more Ft4 tends to drop

But if trying this don’t go from 30mcg to 15mcg in one hop…..reducing T3 by 5mcg and waiting 6-8 weeks

What are your vitamin levels like?

Yeswithasmile profile image
Yeswithasmile

Hi FancyPants54

I’m sorry it’s so tough. I honestly don’t know what is happening to your poor body.

I can tell you that my t4 dropped from 57% of the range when on 100mcg to minus 10% or something on 75mcg levo and 10mcg t3. I upped to 100mcg and increased t3 to 20mcg and I got to minus 1%. I then raised to 25mcg levo but found I had severe joint pain.

I am now on 125mcg levo and was taking 25mcg lio but have found the last two weeks I am jittery and palpy so dropped to 20mcg t3. I have been on this for around 6 weeks so was surprised that I hadn’t noticed this earlier. I think it must mean t4 is raising. I had started using progesterone cream and feel it must be helping my body use my meds more effectively?

I would also say most of this year since starting t3 I have felt utter crap. Really where I wasn’t really functioning. Only raising levo has helped this.

I say all this as I wonder whether you are the same. There do seem to be a lot of people that need higher t4 so maybe you need to lower t3 to get your t4 up? I don’t know how old you are but I think female hormones do need to be balanced too to help.

Loads of luck and more patience to you and less frustration x.

FancyPants54 profile image
FancyPants54 in reply to Yeswithasmile

Hi. I'm totally fed up with feeling so awful for so long. But this year has been the worst. I honestly feel more hypo now than I ever have.

I think this evening I've come to a decision. I've even written it down so that I don't forget it. I'm on week 4 of this 30mcg T3 dose. I'm not prepared to wait for 6-7 weeks to test when I feel worse than on 25mcg T3. So I'm going to lower the T3 to 25mcg and then to 20mcg as soon as I can. We are told we can raise T3 every 2 weeks if we feel OK, so I'll use that as a guide to drop the levels too. At the 20mcg level I had low FT4 as in under 50% but way better than now. If I can get back to something like that (I still felt crap) I will then try to raise my Levo. This time I will try that in 12.5mcg doses not the full 25mcg which I tried last time and that became too much for me.

It's so hard. I am on HRT and I have been taking additional progesterone. We talked about this a few weeks ago. I am using Utrogestan every other night (I have a coil so don't need a lot of it). I will keep doing that. The other experiment had been to switch taking my Levo at night. But we eat late and then trying to fit the thyroid meds in and the Utrogestan it's driving me mad and I feel no different so that's going back to first thing in the morning.

FancyPants54 profile image
FancyPants54 in reply to FancyPants54

The only other alternative I think I have is to go T3 only and I've tried that in the past and it didn't work.

BrynGlas profile image
BrynGlas in reply to FancyPants54

Sorry this is a long one!!

Hi, your T4 will drop as you take more T3. T3 is the active hormone, the one your body converts from your T4 levels if your thyroid was working properly. You don't need tons of T4 circulating in your blood if you are taking T3 as well. Your body needs T3 - the active hormone - rather than T4. And a lot of us can't convert Levo (T4) into T3 as we should, so it is no good having Levo in abundance in your blood stream, if you can't convert Levo to T3 if you see what I mean.

I have had about 11 months now on T3 and levo combination. I did it myself, I haven't ever seen an Endo and my GP told me T3 was an illegal drug and refused to allow me to even mention it to him again. So I went it alone. I sourced the T3 myself and paid for it myself.

And then I had to learn how to use it myself.

I found that if I tried to take too much T3 in the beginning - this was about a year or more ago now - I got terrible headaches, so I started taking my T3 at 1/4 of a tablet of Tiromel 25mcg daily and I gradually decreased my Levo at the same time.

I upped the T3 at a different time of day still a quarter of a tablet increase each time and tried to work out whether I felt better or not.

About 3 months ago, I got to 75mcg of T3 divided into 4 doses each day and I think I was down to 50 mcg of Levo by then.

It was only after I got to that level that I began to feel any better. My hair started to regrow and I began to lose weight, or at least I stopped gaining weight. I never used to have a clue what weight or size I was each day!

And I have been that way since diagnosis in 1999, along with low mood, outright depression, tried suicide and self harming. I was on anti depressants for years, I couldn't drive at one time, or read a book, I had no life to speak of and I was well aware of it, believe me. If I saw someone walking past my gate I would hide to avoid them!

I joined ThyroidUK at the end of 2019. I had been gaining weight on Levo alone and could not move an ounce of it. I was 67 at that time and I just decided that I wasn't going to just except it anymore. I got really angry and used my anger and determination to motivate myself finally. I thought B**ger. this existence, I am not taking it lying down any longer!!!

I bought and read every book which I ever heard of concerning Thyroid. I read everything I could find, I read the posts on here and gradually got to a place where I thought I knew enough to think of taking over my own thyroid treatment. I can't give anyone else advice about what to do, but I could go for it on my own and no one could stop me.

I had to get my vitamins and supplements right also though, I have been supplementing those since early 2020.

A few weeks ago I dropped Levo altogether and I am taking only T3 alone. I really felt better without the Levo, so after I hadn't killed myself by leaving Levo in it's box AND still felt better the world was my oyster.

I don't know whether how I did it was the right way or the wrong way. I just did what I thought was right for me atbany given time.

But I have increased my T3 a little more lately, and I am doing OK thank goodness, BUT...I found it isn't a magic cure. You won't get better overnight by taking another little white pill. You have to treat yourself as a whole. Diet, supplements, everything has to be in sync before you see light at the end of the tunnel. It took me well over a year to begin to feel better. I do gluten free mostly, I do low carb, I drink goat's milk instead of cow's milk, but I do eat cheese and butter. I rarely eat potatoes, pasta or rice, in fact I don't have them in the house.

I can't tell you that one thing worked 100% and all my problems were sorted. I don't think it is that way, I think it is a mix of everything.

I haven't been diagnosed as Hashi, or cealiac, but I try to think as though I have got both. AND I have an occasional day when I think blow this, I am having a day of totally ignoring my own everyday rules. It isn't doing me any harm as yet, is all I can say. And I do love a baked potato with crispy skin and 8oz of butter melting on top of it.

Don't give up, don't think that Levo is the only thing that is important, because it isn't.

Your body needs T3 if you can't convert Levo to T3, then you need to take T3 and welcome it.

Read Paul Robinson's book, Recovering with T3. And get a pile of A4 ring bound note books and make notes as you read, it helped me to remember what I was reading anyway.

Good luck.

FancyPants54 profile image
FancyPants54 in reply to BrynGlas

Thank you for this reply. I have read all of Paul's books and tried T3 only using his methods in the past. I'm afraid that didn't work for me either. I don't seem to sleep well without T4. The very best I've ever felt on thyroid replacement was using some Armour. But I don't remember the details now. It was quite a while ago and I was a novice and so didn't keep the correct records. I do now. It was Dr Peatfield who put me on the Armour, but just when things started to go wrong on it he was rushed into hospital and was out of action for many weeks. I was floundering with terrible anxiety and lack of knowledge and experience and ended up coming off the replacement altogether. I never got to see Dr P again sadly. I was too late in his life and by then Dr Skinner had died.

The private endo I am seeing at the moment is happy to provide my scripts for T3 but won't prescribe Armour.

I have the Dio2 deficiency from 1 parent. So I can convert some T4, just not enough and not reliably enough I suppose. Seeing my T3 levels either drop or remain low whilst taking T3 and watching my T4 levels drops so far makes me think that I was getting some conversion to add to the T3 I was taking when I was on a smaller amount. I have to be careful because I live with permanent atrial fibrillation. I already have a high and erratic heart rate and fluctuating blood pressure so I can't use those things as signs to monitor myself except in a very general way.

I have just noticed that this is day 2 on the slightly lower dose of T3 (25mcg) and I've not put the fan on yet! I haven't been feeling clammy and running with sweat yet today. That's a good sign. It's been horrible.

I'm aware of all the vitamin and mineral stuff and do my best with them. Ferritin is a constant struggle.

BrynGlas profile image
BrynGlas in reply to FancyPants54

I still don't sleep well, with or without T4, but I feel so much better on T3 only, so I understand that very well. If this doesn't show that we are all different and what suits one won't suit another, what does?

I haven't been tested for Dio2, I will get it at some point and see what comes up.

How long is it since you were diagnosed hypo.

I saw Dr Peatfiled once myself, he is a really nice man. He didn't deserve the treatment that he got, I know that.

I am going to try NDT myself. If I feel no better, fine, but at least I will have tried it and I can go back to Tiromel if I have to and it is very affordable. I can't afford Armour, but that would be my choice if I could afford it.

Hope you get sorted.

FancyPants54 profile image
FancyPants54 in reply to BrynGlas

Thank you. I first saw Dr Peatfield in February 2013 and he confirmed I was hypo. But I had been struggling with thyroid for a while by then. Worsening bloating, more tired, less energy, struggling to do my work etc. Really struggling with exercise. I do remember being in rehearsal for a production in 2013 when I first discovered that I couldn't be standing around. In the early days of rehearsal there's a lot of standing around while pieces are worked on that don't directly involve yourself. Normally I would just stand in position if required. But I found myself seeking out chairs or tables I could sit on or lean against until needed. The director of that production had recently been diagnosed with pernicious anaemia and I thought how similar our symptoms were. But I got checked and didn't show that.

Dr P started me on Armour. For a short while I did really well, but I was a total novice then and needed his guidance and that's when he was taken ill. I was suffering horrible anxiety by then and had no idea what to do so I came off it and muddled on for a while. Then I tried reading all Paul Robinson's books and attempting T3 only with Tiromel. Didn't do well on that either. Finally the HRT doctor said my thyroid needed help and put me on some Levo (started me on 25mcg every other day!) and then allowed me to move to 25mcg every day but never on Sundays and other such nonsense. But she did write to my GP and he just picked up the prescription. I ended on 125mcg where I am now. But I've never felt well on Levo. Never had energy.

Today I'm back to full doubt mode. Have I done the right thing to drop the dose or should I have instead moved up to 35! I wish I knew what to do. How much of it do you take? I get freaked out seeing people doing well on 10mcg a day with Levo and I look at 30mcg and think "I'm going to kill myself" even though I know that's unlikely.

BrynGlas profile image
BrynGlas in reply to FancyPants54

I take 75mcg in 4 doses daily. And at times if I need it I add a half of a 25mcg tablet, or a 1/4 of a tablet. I tend to get a headachy if T3 is running low and if I take more T3, the head ache goes away, so I know I am not imagining it!

But when I first started on T3, there was no way I could take a full 25mcg Tiromel, I had to do it by 1/4 tablet stages. I gradually built up to 3 doses a day and I tried to start around 4 am in the morning, I took my Levo and T3 then.

But as I told you earlier, I completely dropped Levo fairly recently. I felt better without Levo than I did on it. I was on only 50 mcg by the time I was on 75mcg of T3 though.

I still have a thyroid as far as I am aware, so I could be making some T4 myself I suppose, I don't know. But really if I am getting the T3 anyway, why might my body want to make T4? I assume that TSH is suppressed, so it can't be too likely I wouldn't think.

I think I saw Dr Peatfield much earlier than you then, probably around 2002/3 I would think. I was diagnosed in 1999, though I started suspecting I was low in 1997, that was the year that I have found the first blood test for thyroid in my notes anyway. And in the beginning, I was so upset that Levo made me feel no better, that I was determined to get better, but there just wasn't the resources available at that time.

Kowbie profile image
Kowbie in reply to BrynGlas

Hello I’m kobie I’ve just been reading your journey and think your marvellous at what you have achieved I’ve been hypo about 30 and have never felt right at all and still don’t , I did put my results on here and everybody was so helpful I’m not converting t3 very well , and I hope you don’t mind me asking where I can get t3 from , I would just like to know as my dr said about putting my thyroxine down but managed to keep it for now ,I’m going to see if they will do me another blood test anytime now as I have been taking some vitamins I’m on 200 thyroxine anyway I think I’ve gone on enough now so we’ll done x

FancyPants54 profile image
FancyPants54 in reply to Kowbie

Thank you. I am getting my T3 on a private prescription. I see an endocrinologist privately for it. So I have to pay unfortunately. The T3 isn't too costly now. It's just come down in price to 50p per 20mcg tablet. But of course I have to put the cost of seeing the endocrinologist on top of that.

Don't let your GP lower your dose just based on TSH results. You must ask him to check FT3 and FT4 before you will agree to do that. TSH can be low for all sorts of reasons.

Kowbie profile image
Kowbie in reply to FancyPants54

Thanks for your reply I’ll have to see how I go probably see about seeing a private one as I do have a appointment with one but it’s a 26 week wait at least but thankyou x

Simplyred57 profile image
Simplyred57 in reply to Kowbie

Hi Kowbie, you can ring the endocrinologists private secretary ( if he’s nhs ring his nhs secretary and she will give you it , I was on an nhs waiting list but saw him a week later privately, the best money I ever spent , he transferred me to nhs immediately and did bloods , so worth doing if you can 🤞

Kowbie profile image
Kowbie in reply to Simplyred57

Oh thankyou for that I’ll see if I can get hold of her thanks again much appreciated

Simplyred57 profile image
Simplyred57 in reply to Kowbie

Is he from the recommended list ? I chose one that was T3 friendly and asked my GP to refer me to him , and then just rang his private secretary, if your going to do it I’d advise you do a bit of research first, the one they were going to refer me to at my local hospital had a rubbish reputation, good luck 🤞🏻

Kowbie profile image
Kowbie in reply to Simplyred57

I haven’t been given a name of who it is just that there’s a 26 week waiting list, and when I asked my go if he could tell me of a good one he said he couldn’t, can’t quite remember,or wasn’t allowed so at the moment I don’t know thanks though

BrynGlas profile image
BrynGlas in reply to Kowbie

And there was no name on the letter which came with your appointment? It is so long since I had an appointment or a hospital letter at all, but I'm sure that mine gives the name of the clinic where you are going to be seen as well as the name of the Consultant. It doesn't necessarily mean you would see the Consultant, you might see a minion , but you should have a Consultant's name I would have thought.

Might be an idea to ask the Surgery to ask for you? Would you be confident to ring and ask staff at the surgery. You wouldn't have to bother your GP. I think we should be able to check out our Consultants too on the hospitals's website, but I haven't worked that one out myself yet. That is a work in progress.

Have you got anyone to go to the Outpatients which you Kowbie?

BrynGlas profile image
BrynGlas in reply to Kowbie

I just buy my own

Kowbie profile image
Kowbie in reply to FancyPants54

I was wondering about trying to get some without prescription but thanks

BrynGlas profile image
BrynGlas in reply to Kowbie

Pm me Kowbie

Kowbie profile image
Kowbie in reply to BrynGlas

I’m sorry I’m probably a bit thick but what do I do

FancyPants54 profile image
FancyPants54 in reply to Kowbie

Click on BrynGlas 's name and it takes you to her page. On the upper right of the page there are 3 buttons. The middle one is to send a direct message. Press that and then type your message to her.

Kowbie profile image
Kowbie in reply to FancyPants54

Thankyou

Various ways to take T3 - I took my dose l at once with my levo for a while. I felt much better although I needed a little bit to sleep. So I take half AM, 1/4 Pm and 1/4 before bed (150 levo / 25 T3). Bit of trial and error but I think it was Shaws (I may be wrong) who has suggested taking T3 in once does to get it absorbed at a cellular level.

FancyPants54 profile image
FancyPants54 in reply to

Yes Shaws does take it all at once. But at this stage that's fine tuning. I need to find a way to increase the FT4 back up to something like sensible. So first I think I need to lower the T3. I have felt rubbish on 25 and 30mcg, well I felt rubbish on 20 too, but not as rubbish as I have since. So I will stick to twice a day for now as that's how I've done it since November and I've not had trouble with that. I tend to feel OK in the evening anyway as I wind down. But first I have to try to find a level where I can get both hormones over 50% and feeling less hypo.

Yeswithasmile profile image
Yeswithasmile

Oh yes. I do recall now.

I would ask if you feel the hrt is the right dose for you? I have done reading on it (mainly due to desperation of feeling like you - rubbish) and why extra progesterone? It’s difficult to get your head round isn’t it? But it strikes me that you really have to start slow but the doctor gives the coil then your get the patch or whatever then you take more progesterone and it seems like doctors prescribe more and more rather than trying to balance it?

The cream I’m using within days made me feel so improved. Weird I thought. People seem to take it for months before they notice but I was noticing if I didn’t use it that day. Then I noticed peeling gums. I did a post on it. I found a lot of info on too much progesterone. This made me lower the dose. Gums have healed. Maybe it’s coincidence. But I have gone on the waiting list with Louise Newsome clinic. Have no clue whether that’s right or wrong but 🤷‍♀️ I’m trying it.

Personally, for what it’s worth, I think your plan is a good one. I think lowering your dose to increase your t4 is the way forward. I know it made me feel loads better and I have read SeasideSusie say same many times. I thought it was madness. T3 is the active hormone but I doth my cap. She was certainly correct in my case.

Don’t misunderstand. I’m still massively symptomatic but I’m not lying down most of the day feeling quite so miserable.

Sometimes I think I want to stop t3 completely but have also read people doing that and realise that’s foolish when we’ve come so far. You’ve got a few months on me so you have done brilliantly in my book. You know what isn’t working now so you can only move forward from here and maybe in a few weeks you’ll feel a bit more human. I’m sorry I can’t make you feel better now though. I’m sorry it all takes so long.

My next plan is cream and lowing t3 to 10mcg over 8 weeks and raising levo if I need to then. I have done things too quickly before and it has literally cost time not saved it (I know so many people will be rolling their eyes reading that - yes you all told me so 🤣🤣)

All the very best with it FancyPants54 x.

FancyPants54 profile image
FancyPants54 in reply to Yeswithasmile

I'm sure I'm doing OK on HRT. I've been on it a few years now and have spent a lot of time finding the best delivery method for me (Lenzetto spray) and finding the right dose. I'm under Dr Newson. It's a good clinic. But like everything else, use it to get the test results and ideas and prescriptions and then experiment until you find what suits. I see so many women on private groups who will only do what a doctor tells them and if it doesn't work they won't try to experiment. Drives me mad.

I know from my time on T3 only I the past that I didn't do well. So I do need some T4 and by taking this much T3 I have knocked T4 out of the court and done myself no favours. If the endo I get my private scripts from would do it, I'd try Armour, as Armour in the past was the only time I felt well for a while. But he won't countenance it.

I know that people say when raising T3 you can increase by 5mcg every couple of weeks if you feel OK until you get to 20 and then hold and test. So I'm hoping I can lower it in a similar way.

Yeswithasmile profile image
Yeswithasmile in reply to FancyPants54

So you’ve already done the LN clinic? I only went that direction because I like most of us, I have lost all faith in doctors but thought with her profile she must be ok? Lol. What a way to decide on a doctor!! Good for you though. You e obviously already been thorough there. Wish I had before I’d started t3 🙄. Most people my age seem to get fobbed off with ‘it’s the menopause’ where as it did seem to enter in to it with me.

My endo was like yours. Obviously amounts were less but it was all t3. They obviously don’t get it at all. They treat us all the same. Noted your remark about NDT. I had considered it myself. A lot. But I have issue with what it is and that’s stops me at the moment. However have you thought about thyroid s? A lot of people seem to take it. I think it’s fairly inexpensive too.

I hope your reduction goes smoothly. I’m sure it will and the best of luck with it x.

FancyPants54 profile image
FancyPants54 in reply to Yeswithasmile

One of the things that worries me about NDT is the difficulty of getting hold of it. It seems much harder now than when I experimented with it years ago. I could get Armour on private prescription if I could find someone willing to write the script.

I thought Thyroid S was one of the ones that vanished recently and everyone is desperate to get hold of again. I could be wrong.

Yeswithasmile profile image
Yeswithasmile in reply to FancyPants54

No I think you’re right. It was hard to get hold through covid apparently but they are back up and running. I enquired a few weeks ago but decided to persevere with levo and lio instead for a bit longer. I have to say as this week (I say this week because it could change yet 🤣) I’m glad I did as I have changed t3 brands and have reduced slightly but still feeling a bit improved. I was on Mornigside and am now on cynomel. When I’ve changed levo brands before it’s made me feel worse for a week or two so I’m surprised I am feeling better. Maybe it was fillers 🤷‍♀️

FancyPants54 profile image
FancyPants54 in reply to Yeswithasmile

That's hopeful. I think I've seen others complaining that Morningside feels inferior. That's about right as it's the one the NHS gives out when it has too! I am using Thybon Henning.

Hi Fancypants have you ever tried splitting your Levo - most in the morning and the rest around midday? I know some people find that helps? X

FancyPants54 profile image
FancyPants54 in reply to Josephineinamachine

No, not tried that. I hate splitting meds. Such a faff. But I can't see the point unless it feels too much all at once, which it doesn't at this level. If I try raising it and have an issue like that I could try splitting it and taking some with the afternoon T3. Thanks. Good idea. I'm writing it on my note so I don't forget it.

Josephineinamachine profile image
Josephineinamachine in reply to FancyPants54

Someone told me about it…hang on I’ll have a look now to see if I can find the post…

Batty1 profile image
Batty1 in reply to FancyPants54

I use to take my T4/T3 at one time (horrible results) and then took them at bedtime (no benefit) to me so I just decided to split my meds 1/2 in AM and other half late afternoon and I haven’t looked back …. Its a pain but it does become a habit and having a watch I wear 24/7 with alarms helps keep me on track and if I do miss my dosing time I adjust but that doesn’t happen often.

If changing around meds schedule does not work then maybe its time to reduce the T3.

FancyPants54 profile image
FancyPants54 in reply to Batty1

I have split the T3 into 2 doses since I started in November.

I reduced the T3 by 5mcg yesterday and had a better day yesterday with only 1 point of the day were I poured with sweat and could not cool down, steaming up my glasses just sitting reading. Today, so far, no need for a fan. I definitely don't think I do well with very low levels of FT4 so I do think I have to try to find a way to increase both hormones and taking higher T3 didn't do that.

No I can’t find who it is was now! I see their name a lot. It’s not in my notifications anymore. I think maybe tattybogle tried this as well if I remember correctly? But I think this was in relation to raising TSH not T4. Honestly - my memory, sorry!! 🙄 maybe I’ll find it on my laptop will try to look tomorrow x

Sorry to hear it Fancy :( all I can say is that I don't do well on Levo and t3 synth combo at all, can only take NDT and maybe a small bit of levo (jury is still out on that tiny bit of levo). Is there any chance you could get NDT? Whether it is Thai or Armour?

FancyPants54 profile image
FancyPants54 in reply to

I am really reluctant to try to get the Thai NDT because it too went out of supply recently and desperate people were on here trying to find alternatives. I need something I can guarantee the supply of. I also don't think I've exhausted the options for synthetic T3 yet, but it's hard trying to work out what those options might be. I felt terrible the evening I posted this thread.

in reply to FancyPants54

Big hugs, yeah I totally understand ❤

waveylines profile image
waveylines

Hello FancyPants54 Am confused by this notion that you have missed your sweet spot. My limited understanding is that when your body is under treated all the systems run slow. So as you wake it up it requires more not less. Could it be that the reason why your body is showing less thyroid hormone on a higher dose now is that it has increasing demand as it wakes so the levels of ft4 and ft3 have dropped because your body actually needs more which you havent matched with your increases....hence you feeling worse.

I was on a much higher dose of levothyroxine and liothyronine when I was trying this combination of medication out. My Liothyronine needs were close to 40mcg and the levothyroxine was well over 200. Imoved across to ndt as I felt more even on a ndt .......I ended up on 4 1/2 grains.......and was still in range with both tests. For me my ft 4 needs to be near the top to feel well. Since being on b12 injections and gluten free my uptake is better so on ndt I now only need to take 3 1/2 grains to maintain my levels.

In addition Look at your signs and symptoms......are any indicative of over treatment? Bare in my palpitations occur for high & low so not a good indicator of which you are. Loose bowels, sweating, shaking. Are you taking your pulse and temperature first thing in the morning before rising.......this is a good one to track and record. Are you keeping a little daily diary of signs symptoms, meds and vitamins taken with blood test results added in. Tedious but helpful in the long run. I dont keep one now as have been stable for a long time.

The blood test results show that you are under medicated not over medicated. Be helpful if you add the actual results and ranges in your post.

Hope this helps.

FancyPants54 profile image
FancyPants54 in reply to waveylines

I felt it was too complicated to try to put all the results in the post because there are many of them and I use different labs, which is why percentages are good. The percentages show that each time I raise my dose my percentage levels fall. Not rise. That makes no sense to me. On 30mcg T3 I was constantly sweating. Sitting under a fan all the time. Using a neck fan when not sat under a desk fan. My temperature didn't go high at all, but I felt unbearably hot. I instantly feel less hot having reduced to 25mcg T3. But that won't help my legs gain energy. My thinking is that because I had higher rates of both hormones when taking less T3 I must have been benefiting from some conversion because my overall levels were higher. Now, on higher external T3 my levels had dropped so I'm not getting the benefit of conversion. This is why I'm wondering if I'd be better on less T3 and more T4. There are a lot of people on here who seem to do well on 10mcg T3 a day with Levo or even 5mcg! I was rushed through the starting process by the endo. and never stayed on 10mcg for long enough to test or settle.

I have the added complication of living with permanent atrial fibrillation. This means that signs are not a reliable way for me to monitor anything. My HR and BP fluctuate by the second almost.

waveylines profile image
waveylines in reply to FancyPants54

Hi Fancypants you have all my sympathy. Can understand why you use percentages if you using different labs each time. A very wise knowledgeable thyroid doctor once never go in whether you feel hot or cold, check your actual temperature because it can actually be low when you feel hot, sweaty and vice versus. I think you demonstrate that beautifully.

As you are very thoriugh am guessing you have ensured the other factors including adrenals are all optimal? For me B12 was a massive factor in my uptake andconversion.

You are quite right if your endo rushed you through the earlier phases of introducing liothyronine then you wont have had a chance to evaluate it......so starting again may well be worth doing.

FancyPants54 profile image
FancyPants54 in reply to waveylines

It might be worth doing, but it's a terrible blow as it's taken from November to now to reach this point and now will take months to reverse things again. I've barely held it together this year.

waveylines profile image
waveylines in reply to FancyPants54

Am so so sorry sorry to hear this. Before you do it cross check the other factors. It took me a long while too to find the right combination & dose level. Its so frustrating. ....there is no quick way but if uve kept a log of all uve done to date with all the blood tests it won't be wasted as you can refer back to them. Also you probably don't need to start completely from scratch but lower your liothronine back to where you felt better than take stock and plan next steps. Big big hugs and hang in there....

JAmanda profile image
JAmanda

I’m sorry to hear this and can’t honestly help as I don’t find my taking T3 lowers my t4 much - maybe 10-20%? I know you post a bit here and are a pro but just to comment you can see your levels are low… is there any other explanation like low vits or minerals? I see people here who just ditch the Levo and go all in with the lio at 60-75 mcg per day… is that an option?

FancyPants54 profile image
FancyPants54 in reply to JAmanda

Vits and minerals have been a constant battle for years, but that is ongoing and nothing is desperate, nothing is optimal, but not desperate. I don't think I can get them optimal without better thyroid replacement because it's never been possible so far. Vitamin D will rise OK and so does active B12 but ferritin is a b*gger. However, it's not on the floor.

I tried T3 only using Paul Robinson's methods in the past but that didn't help much either. In fact I got worse and had to stop it. Again profuse sweating was a big issue as it has been on 30mcg just now.

There were 2 things I could do I think. One was to blast onwards and take more T3, move to 35 from 30. Or I could reduce T3 and try to use it to help me raise the Levo, which has never been comfortable for me over 125mcg a day.

As I was feeling the worst I've ever felt on 30 T3, literally incapable to doing anything much at all (don't know how I managed to pack customer orders the past 3 weeks, lucky for me Brexit has slowed orders down a lot (!)), I haven't unpacked new stock or restocked shelves or even put the hoover round the sitting room since I moved up to 30mcg. And I was sweating like crazy all the time; fans on everywhere or round my neck, I didn't feel like going up to 35 when feeling like that. Also, although it's hard to judge because of the atrial fibrillation, it was looking like the diastolic BP was going up a bit.

I'm not sweating today. I'm not doing anything though. I will see what it's like later as I must hoover at least one room today. I feel as though nothing works for me. I get instant improvement whenever I make a change. But they don't last more than a day at a time usually.

JAmanda profile image
JAmanda in reply to FancyPants54

I’ve been on 100/125 Levo and 25/32.5 lio for a bit now and my fatigue is much improved and my back and hip pain is all gone… T3 is 6.3 on Medichecks range so plenty high - but my feet are so damn sore! They’ve got worse over the weeks recently so I’m woken up by the pain and can barely walk. Naproxen cures them but only the day after I take the pills… so I assume it’s just crazy inflammation. Ihave no idea what causes inflammation or even what it is really but I am now going all in on the T3 and dumping the t4. I guess we have to try everything. I’m just adding an extra 5 of lio so will be on 37.5 lio and no Levo… this could all go horribly wrong but I’ll experiment and see if I get the miracle some claim when you stop t4!

If it fails I’ll have to consider the 60-75 lio route or ndt… or just stick with my dose as it was and tons of naproxen.

Just to say with my T3 high as it is right now my vits and minerals are fab on no supplements and my cholesterol is down from 8.9 to 6.1. So getting T3 high certainly does a lot of good.

FancyPants54 profile image
FancyPants54 in reply to JAmanda

My feet are really troublesome too. Painful, stinging, kind of numb, but very sensitive and sore. Painful to walk on and swollen. I've talked about this on here several times, as well as painful legs and a strange sort of backache on any kind of effort. No one else has really suffered the same. But at the weekend I read Tears Behind Closed Doors. Can't say I learnt anything new from it, it's a bit dated and not that well written and mentions God far too many times for my liking. But it did talk about symptoms and for the first time a whole host of symptoms I suffer appeared on a list. Including the painful swollen feet and legs and the backache. An odd one that really made me stop and think was car sickness and falling asleep immediately as a passenger. I was terribly sick as a child, in the car. And as an adult I would fall asleep as soon as we set off unless I was driving. A sort of dozy horrible sleep. I thought I had trained myself to do it because my husband at the time drove too fast. But there in the symptoms list was fear of speed where there had been none before. Fear of over-taking in the fast lane on motorways etc. Reading those things was like a vindication!

Are you going to wean the Levo slowly? I would. I tried dropping to 100 from 125 not long ago. I thought I didn't need it because once I began on T3 my FT4 level tanked. Mistake. Took about 2 weeks and then my hair shed at a truly terrifying rate. I was thin before, now I am so self-conscious of how little hair I have. I also struggle to sleep if I reduce T4 below a certain point.

I would love to get my T3 level up to see what it felt like to have energy again. But it just made me even more tired on 30mcg and sweating like a pig. I'm sure my levels were worse than on the 25mcg dose because I felt so much more hypo. Perhaps I should have pushed on to 35mcg. But I was scared at feeling so awful and dropped back to 25 at the weekend. I felt great on the Saturday and depressed as heck yesterday. Today I feel flat.

JAmanda profile image
JAmanda in reply to FancyPants54

I felt every time I did badly on T3 was because I was t taking enough not because I was taking too much.

Indeed I’ve totally stopped the t4! You’re right - I’ll go back on it tomorrow and wean down by 25 a week. I was just hoping to get that eureka my pains have gone moment!

I did take 2x naproxen two days ago and my feet are pretty good - i just really wanted to get my feet better through the thyroid meds ie areal cure not pain killers.

FancyPants54 profile image
FancyPants54 in reply to JAmanda

My feet are very painful today. They feel like I have sandpaper inside my socks. I trod on a sharp pebble in the garden and winced. It's no fun. What I wouldn't do to go for a good long walk without pain and exhaustion.

FancyPants54 profile image
FancyPants54 in reply to JAmanda

I'm a coward I suppose. I can see from my results that I'm nowhere near over-dosed but all the sweating seemed worrying and I thought it might be too much or because my stupid T4 levels have dropped so low.

The 6 week wait between each change is doing my head in.

Murphysmum profile image
Murphysmum

I haven’t read all the replies cos I’m on the hop, but my FT3 and my symptoms didn’t improve until I dropped levo completely.

This might not be right for you but maybe you need to tip the balance in that direction first and see. I haven’t got time to write more but look through my previous posts, this was definitely the case for me

😉

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