hi all, i'm feeling a bit depressed with how my progress is going. i.e. slowly.
Since my last test I decided to take 150mcg thyroxine on Sundays and 125mcg the other days. It seems to have had the opposite affect, with both fT3 and fT4 both dropping. Previous dose was 125mcg levo 6 days a week, 100mcg 1 day a week to give 121.4mcg avg a day.
I have upped my thorne basic B to 2 x a day. This seems to have helped my folate result but not my B12.
I have upped my Vitamin D to 7,000iu a day. This has really improved my result here.
I was very shocked by my CRP result but suspect that might be because i had the moderna booster the day before, and my arm is red and swollen and has a slight rash so could just be that.
I am doing terribly with ferritin. I really want to just take a small amount of iron bisglycinate a day to support me, but my iron serum level was very high when i tested a little while ago so i know I shouldnt... but I feel so tempted.
With my thyroxine, I was thinking of increasing to 150mcg 2 x a week. Is there any point? Feel like it never goes the direction you want it to!
All help appreciated, thanks
Written by
jsy_girl
To view profiles and participate in discussions please or .
You could always try an increase. However you can have too much of a good thing! It could be that your body doesn't want any more T4 and is eliminating it from the system rather than increasing your FT4 and FT3.
Hi Lalatoot ah okay thank you - i guess that could be the case in which case, how do I ever get my ft3 and ft4 higher in the range, or is it just mission impossible for me?
Ah yes. But that's not exactly eliminating it from the system. It stays in the system. rT3 is converted to T2, T2 to T1 and then the last atom of iodine is recycled in the body. But that's not going to happen with those low levels of FT4. The FT4 would have to be right up near the top of the range.
jsy_girl, you certainly could try increasing levo by 25 mcg, see how you feel in six weeks. If you feel worse, you can always go back down again.
I have had an under active thyroid for 17 years, at first I did not want to take drugs. Nurse said if I did not have Levothyroxine I would be very ill. My doctor gives me a blood test once a year, I would not understand if I saw the results. I have no problems, so I go by what my doctor prescribes.
This video by Dr Eric Balcavage may explain why adding more medication which lowers your TSH while increasing T4 doesn’t always translate into better outcomes:
Really common question I get is, "If I am taking T4 and T3 medications, my TSH is low, T4/fT4 and T3/fT3 are normal, why do I still have hypothyroid symptoms?"
It is a great question and it is built around the confusion of how thyroid physiology works.
People (doctors included) have been taught that if blood levels of thyroid hormone are within the lab reference range, then the level of thyroid hormone inside the cells is normal as well.
Unfortunately this is not always true.
The cells of your body have the ability to self regulate the level of T3 inside them independent of the level of thyroid hormone in the blood.
(Obviously if there is very little thyroid hormone in the blood for an extended period there is likely to be a lower T3 stat inside the cell.)
But, lets get back to the question being asked, why do people still have hypothyroid symptoms despite taking T4 and many times T3 medication?
The answer comes down to the OPERATING MODE of the cells. Cells operate in two states.
A low stress state, called homeostatic state, where the focus is on manufacturing. The cells are focused on making energy, hormones, proteins, etc.
A high stress/danger state, called allostasis, where the focus is on cell defense.
In the homeostatic state the cell wants high amounts of T3 to drive the manufacturing process.
In the allostatic state, the cell wants low amounts of T3 inside the cell.
T3 is the "dimmer switch" to control manufacturing and cell defense.
When cells sense danger, the reduce the available T3 within the cell. This turns off the manufacturing process and turns on cell defense.
Unfortunately you may not feel well when this happens. You may develop hypothyroid signs and symptoms and eventually a glandular hypothyroid condition.
When you take T4 therapy to replace what your gland can't make, blood levels of T4/fT4 can normalize.
If you continue to have hypothyroid symptoms, someone may start looking at T3/fT3.
thank you Serendipitious that is good to understand but I don't know what i should do, its like there is an invisible barrier for me with trying to get my numbers higher in range!
His advice though does seem specific to if you have high fT4 and low TSH. My fT4 is quite low too.
Are you taking T3 too? Not sure even if I look at your spreadsheet. If I remember correctly Eric Balcavage has a post on how that can drive down FT4 levels.
His point in many of his posts are that if your TSH is below the reference range if you try and add more medication it switches off conversion in the peripheral organs and at the cellular level because you’re in a cell danger response. In many cases you need less medication not more.
It raises the question (pardon the pun!) is raising your numbers the key to being well?
Because for some people being higher in range drives down TSH and cellular conversion even more. You might be creating more RT3. It's a protection mechanism. That is the invisible barrier a lot of people don't know about.
Hey, that video is excellent. This is what I'm dealing with right now. I'm reducing my thyroxine and increasing Liothyronine to try to combat it. Thanks for the link.
Hey - I am similarly frustrated! Meantime, daft question, but I find myself wondering if you tested further from the Sunday medication bump this time and if that could account for the difference? I am guessing not as it is rarely that simple! I thought of you when I heard the news this morning, incidentally! 👍😝
Hi Lotika ahhh i missed you, good to connect. I've been very busy so I haven't been on here lately, also since they removed the app its not something I always think to look at. Are you experiencing similar problems with your dosage? I just don't know how I'm meant to get my numbers higher in range, its like there is an invisible barrier.
Ahhh i'm glad that made you think of me, it has been a GOOD day. I had a similar experience with the bank manager who rang me earlier too. I was trying to sort an issue with a business account and i gave him the name which had LD in it, and he said "can i just say how absolutely fantastic that news was today" - it was just so lovely to hear how it could be a joy spread so far. Touching!
Ha - nice one! The short answer is I have peak serum fT3 is 50% through range on T4 and T3, endo won’t go higher… and if I increase T3 fT4 drops… so I am not quite sure where next for me. But I haven’t quit trying to work it out yet!
C reactive protein is still within normal limits. As far as I'm aware that's not a concern. It seems strange that FT3 and FT4 are so low while TSH is quite low. If it were me I'd be knocking my vitamin D3 dose down a bit as levels are more than good.
How are you feeling on this dose, that’s the main thing. I would love to have the spreadsheet of my doses and ranges like that over the last few years! But main thing is how you’re feeling.
The dose rises have been very tiny- I’d have made more obvious changes for all the cost and bother of testing, then fine tune once you’re close. I’d add more T3 now - 5 a day at least and spread the 30 across three doses well away from food drink and other meds. I’m a similar weight and found I saw a difference with weight at 32.5 T3 -?have since dropped to 30 as went over range. I’m much higher in the T3 range though - you have plenty scope to increase; I’d use that scope.
Thanks that’s helpful in terms of you being a similar weight and seeing a difference at that level. It’s not too much extra to get to as I could try that now for a couple of months and see how it goes.
It’s crazy I just seem to have an invisible barrier that stops me getting to even 50% through range. I would love to just know if it’s possible to feel better than what I do. Haha.
Your better results were those tested on 26th October. How did you feel then? If you felt better then than you do now, I'd go back to what you were doing then and let it have a few months to settle.
I have recently found that more T4 is not the answer for me. I'm reducing my T4 and increasing my T3. I've had some glimpses of better days. But also plenty of rubbish ones so far. But it's early days into this process. More T4 has never been the answer for me. In fact I've felt worse from the time my T4 was increased from 50mcg a day to 75mcg a day. After that I felt dreadful most of the time. I definitely think there is something in this Dio2 process of converting our FT4 into rT3 and then off out of the body without providing us with the useful T3 first.
I didn’t feel any better then, and I don’t feel any better now I would say.
I am wondering as you say about whether increasing T3 would be a good idea. Problem with that is whether I’d have enough as I obv only get a prescription for 25. Might be worth trying it though and seeing how it goes. Can cross the “getting hold of it” bridge later.
I lost patience with Levo earlier this year and have been on T3 only for a few months now. I feel better on it I must say, but I don't have an Endo to pacify, thank the Lord.
Are you eating gluten free? Tried dairy free? I eat low carb, but can't eat high fat, because I don't lose an ounce that way. Dairy free didn't do anything for me, but I use goat's milk and goat's cheese these days instead of the cow's varieties. I think I will be trying different ways to eat and different ways things to try until I pop my clogs.
I am on 75mcg of T3 daily. I began taking T3 last year, gradually increasing it until May/Juneish, when I was beginning to think of giving up and trying something else, that I noticed my hair was growing back! In fact I had never realised that I had lost so much hair until I saw it growing back. I have my Nana's's genes and she endowed me with lots of hair, or I would have been suicidal again I think.
But I am sleeping so much better, not cold, BP, temp and and pulse are great, so I am sticking with it. And the raft of supplements I take daily.
I'm glad I read your reply. I'm on 45mcg T3 and have taken my Levo down to 75 (still washing out) and not yet feeling better (except on the days when I increase, just for that day usually I feel better). But I was starting to worry because 45mcg sounds so much (when many on here seem to get wonderful results using 10 or 15mcg a day!) and I still have so far to go.
It just sounds like a lot to me. Either way. I've tried T3 before and not got anywhere with it, but didn't take this much of it. GPs and NHS Endos seem to think 10mcg a day is more than enough! I guess that attitude has scared me off a bit. So now, on 45mcg and lowering Levo I feel rather scared of how much I'm taking. I expect I need to get over myself.
Yes that is exactly how I felt. On 75mcg T3, I was very aware that I hadn't seen anyone mention taking such a high level of T3. So I worried about it.
I asked on here of course and I was told that if I was feeling OK on that dose I shouldn't worry about it, because of courseI had no idea what the level of my own T3 was pre 1997 which was about the time that I had started to see the GP and tell him how ill I felt. It was all put down to menopause then of course - I am 69 now - but I had my first thyroid test in 1997 and told it was negative for hypothyroid.
I had tried HRT at about that time and I gained 2 stones in weight in 2 weeks! I was told I could never take HRT again. I was glad that I had been told to go back only 2 weeks after I started those particular brand of HRT. Chances are that they would not have believed me if they hadn't weighed me! I have had a lot of that - people telling me that I couldn't possibly have gained so much in such a short period of time - though I understand it is more than likely fluid. However if enough fluid (can't remember what it is called, mucin? ) piles on, it still means that you can't get into the dress/jeans you bought only a couple of weeks ago!
Diagnosed finally in 1999, when I had to have my wedding dress (which had fit me in February that year when I bought it) let out 2 weeks before my July 17th wedding day! I was devastated, nothing fitted, not even my engagement and wedding rings!
I have been waiting to feel better ever since, on Levo only, until I decided that at 68 years, in 2020, I had learned enough that I was going to buy and use T3. My GP was very much against it, saying that it was an illegal drug and I wasn't to mention the words again to him!
I reduced Levo as I increased T3, but decided a few months ago that I would try ditching Levo and I felt even better after dropping the 50 mcg of Levo that I was still taking.
I am still having a problem with weight, difficult to reduce it still, so I have decided to increase very slowly again. I do feel fantastic though, no temper tantrums, - I could take off like a volcano over nothing for years, my marriage broke up in November 2018 - the year I was in ICU for 10 days after an overdose and I wasn't happy at all that it hadn't worked!
I had been on anti depressants for about 4 years and was scared to come off them to be honest. I was almost 15 stones at that time, when I had been 10st 3lbs for my whole adult life, so to be so big and nothing at all worked to reduce it.
I was told I had to start to admit to myself that I was eating too much junk food, calories in have to be less than calories out, move more, etc etc.
While I was in hospital I 2018, I tried to talk to Dr's about my size and they asked me why I wanted to lose weight! Their opinion was that at almost 15stones I had no reason to worry about my weight!!!!
I never knew what weight I would be when I woke up each day. I had everything from a men's size 40 inch waist jeans, to a size 22 dress, to a size 18 jeans all in the same week. No wonder I was feeling so duff!
I am 12st 12lbs this morning. I got down to 12st 5lbs this summer, so I have gained a bit again and that is why I think it is time for another increase. I would love to be a size 12 again, that is where I belong, a size 12 please God.
But I am so much better in every other way that I can cope with it at the moment. I had my MOT at my new GP surgery a couple of weeks ago. My BP was 120/80 and it had been creeping up last time I had it taken, pulse was 85. I am sleeping so much better. I have had no loss of temper over nothing either.
I sold my house this summer, found myself a partner and have moved from Wales. I couldn't have done any of that in 2018, believe me.
I am so glad I found TUK and this Forum, because I would have still been on Levo now if qi had still been in thrall to my old GP. Unless I had finally been successful in killing myself, which I couldn't have ruled out.
One thing I have been able to do is to trust myself, trust my own judgement. I don't need a blood test to tell me that my levels are good, I know where I am and accept that I need to adjust things, either way if necessary. I am feeling so much better within my own skin these days and I know how lucky I am.
That's a lovely story @BrynGlas. I'm so glad you are finally feeling better. They (medics) really have no idea about this do they? They blame fat for everything. I'm not as noticeable as you, but still vary quite a lot each day and through the day. Some days my jeans belt is on 2 holes, others 3 holes and occasionally 4. I can see the fluid accumulation in my feet and my wrists. I'm huge compared to what I was 9 years ago. I was fit and active and happy. Now I'm a couch potato with horrible pain in my feet if I try to do anything. I get breathless easily and I'm exhausted from the time I get up, but not sleepy. I think this is why I'm worried. I'm increasing T3 and still feeling as exhausted as I was on Levo. I do feel my gait is a little better though. Nobody cares.
HRT did not have that effect for me thank goodness. But I have found it hard to find a suitable dose of it with thyroid so out of whack. I'm finally feeling like I'm in a good place on that front.
I have clothes of all sizes and as a result my spare room where my wardrobe lives, looks like the sorting room of a badly run charity shop. Clothes piled everywhere because there are way too many of them to fit into the wardrobe or drawers. I hate it. But if I give all the smaller clothes away and the fluid disappears at some point, I'm stuck and have to re-buy. It's so depressing. I was a size 16 (I'm nearly 6ft tall) now I'm a size 24/26. It's gross.
Unfortunately, no, they haven't a clue, they just treat the symptoms, and give us a token gift of Levo which so many of us can't take and feel better, never mind well.
Yes it is strange isn't it? You are exhausted but you are either wide awake or asleep. No middle ground at all and the sleep was never enough.
Weight is my biggest bug bear. If I could have been a decent weight I am sure I would have felt better. But on top of that, my doctors didn't believe a word I said. I really took it very personally when they accused me of lying to them! I tried everything, it didn't make sense, but I could keep diaries, new I was not eating too much of anything, counted calories, you name it and I tried it, but nothing worked!
I had to smile when I read your description of your clothes, I was exactly the same, clothes galore, but nothing that I could rely on. I had nothing to look nice in, just things to cover my body, that is all they were. Necessities. I wouldn't go to my God daughters wedding because I was so huge, I couldn't face it.
And in those days I was only told my blood tests were normal, or they might tell me to increase my Levo, nothing at all else. No mid way and I never got told to decreasemy Levo either. The only one to tell me that I was taking too much Levo was the Gap who I recently left behind me.
Every symptom was treated, but no one put 2 and 2 together and I had no idea at all what was wrong, because I was told I was normal until I got the latest pratt! LoL
I hope you can get yourself well. I can only say that I am so pleased that I got rid of Levo. That, to me, was a turning point. I hope you get there. Are you going it alone too, or do you have an Endo or supportive GP?
I’ve tried gluten free and dairy free before. I also eat low carb. I don’t eat a lot of dairy but did reintroduce it. And I am full on eating gluten right now. I have recently been diagnosed with another autoimmune condition and after Xmas I’m going to go gluten free again.
I’d love to try T3 only but I’m worried about sourcing T3.
On paper your results from October " look the best " :
BUT why has your ferritin fallen away - in October it was 53 and now 28 ??
Are you supplementing ?
I find I need to keep my ferritin at around 100 for optimal conversion of T4 into T3 alongside a folate of around 20 : B12 active 75++ : and a vitamin D at around 100 :
Thanks pennyannie. Tbh I don’t rely too strongly on ferritin testing from medichecks - basically it’s always too low, that’s what I take from it, rather than movements between them as it seems very dependent on journey time to the lab and other things. I really struggle to get my ferritin result anywhere. I am not supplementing because I did an iron panel that said my serum iron is high. I did wonder could I just take a low dose iron bisglycinate (25mg) daily just to support it.
OK then, you seem to have a pretty fast metabolism anyway :
Your T3/T4 conversion ratio ( for what it's worth ) shows :-
September at 2.70 : October at 2.90 : and now December is 3.20 :
The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 with most people feeling at their best when they come in at around 4 or under.
I always felt ill on Levo, no matter what the level was. But my doctor was forever reducing my Levo, because he said high TSH was a sign of over medicating! That was another reason why I learnt from this forum all about that side of things.
I did stand up to him on my last blood test, refused to reduce my Levo again and I told him why he was wrong too.
Our GP/Patient relationship stopped right then. I think he felt diminished when a female, elderly patient could tell him that he was wrong and that I no longer trusted him didn't actually need to be explained! ROFLMAO I am finally free of the tyrent who never was able to treat me properly!
Thanks pennyannie, yes you’ve helped me many times before on here. Can’t believe it’s been 2 years since I woke up to my thyroid haha. I would like to try NDT but I’m worried about starting something new and also getting hold of it. I am going to try going to 30mcg T3 and see how I feel.
No worries at all re comment about ferritin. I have time off over Xmas I might make some more pate lol. See if I can support my iron levels with food
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Test Results - help please
Thriva Blood test results- some help please :)
Help with test results please!
