Hello. Just reaching out to see if there are others with the same symptoms as me. I have had hypothyroidism for about 26 years. I couldn't tolerate thyroxine and tried several brands for years. I was eventually told I didn't need any meds so had a terrible time of it. My NHS doc eventually restarted me on thyroxine after about a year and I got a boost but after a month or so I started gaining weight.... and it kept on going on. I didn't have an appetite so wasn't eating much but I gained two stones in about 6 months. Then Covid came and I couldn't get treatment. Anyway, to cut a very long story short I went private, discovered I had increased reverse T3 and DIO2 variant. My doc started me on Erfa and the weight fell off. I lost everything I gained with little effort. The problem I have now is all the weight has gone back on (particularly on my tummy) despite eating healthily and playing tennis for at least an hour every day but I feel terrible and really not myself. I could go days without eating as I have zero appetite. I’m an emotional mess and exhausted. Would be keen to get your views on these results.
Sorry for the long message.
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Tiredofthis77
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These results now show your T3 over range - with a T4 at 16/18 - sorry it's not clear enough for me :
Are you still on the same dose of Efra which worked and on which you lost the excess weight ?
If so - how do these blood test results compare to those ?
I can't see well the ferritin, folate, B12 and vitamin D readings - low levels on these core strength corner stones of health can compromise T4 to T3 conversion ?
Hello. Thank you for taking the time to read and respond. I'm going to have to dig out what I was on on 2020 and look at the corresponding results. My dose was increased as I slowly started to gain weight and feel ill. Something T4 has always done to me. It works well initially then it goes to sh*t. I have also resent my results in the chat so hopefully clearer for you now.
Well - it would seem that the T3/T4 ratio in Efra did work for you as you lost the weight that had increased when taking T4 monotherapy -
Were you also feeling well with improved mental clarity and energy while losing the weight on Efra ?
Were your ferritin, folate, B12 and vitamin D maintained at optimal levels ?
Did anything else happen for your weight to start increasing again ?
Over exercising ?
It reads as though increasing your Efra dose had a negative effect and took you past your best dose option on Efra
I don't know about Efra but there have been some batch issues with another brand of NDT and I've not been optimal for a good year - and trying to make tablets work that left me not quite right and short of where I always felt better.
I only adjusted these new batches by a 1/4 grain either way of the dose that had worked well for me for 6 years - but in the end decided to give up - having wasted some money - but now back ' in the room again ' and with a new batch that I recognise as working well.
Yes - this reads as though you started taking too much Efra - and gone backwards - having gone past your ' sweet spot ' ' best dose ' dose :
More is not always the answer - you had found your sweet spot - it worked well and you achieved all you wanted - and it reads like you overshot your best dose when increasing the Efra .
Taking too much thyroid hormone replacement can cause similar symptoms to when under medicated - it's a very fine line I'm afraid and I'm sorry but think you crossed it :
Erfa is natural desiccated thyroid (NDT) preparation
1 grain/60mcg contains 35mcg T4 and 8 mcg T3
How much Erfa you taking?
It sounds as if the T4/T3 balance is not right for you
rT3 is the product of excess unconverted T4, it is the metabolically inactive form of T3....the test only tells you if it is high or low....if high, poor conversion is likely but the FT4 and FT3 labs will show that in anycase
FT4 18.4 (12 - 22) is 64% through the is ref range
FT3 7.3 (3.1 - 6.8) is 113.51% ditto
We aim to have both Frees approaching 75%
Your FT3 is clearly far too high
When testing ...
did you test at 9am
at least an hour away from food and drinks
did you take Erfa about 18 hrs before test ( usually 24 hrs for levo and 12 hrs for T3)
Any variation on the above timing could skew your results.
The T3 in Erfa will naturally lower both TSH and FT4 so your FT4 may have been higher.... we can only judge conversion before T3 in any form is added
The Dio 2 polymorphism is not a guarantee that T4 to T3 conversion is poor particularly if it is inherited from only one parent ( heterozygous)....More likely if from both parents ( homozygous)
Your results here do not suggest poor conversion (usually high FT4 with correspondingly low FT3)...however, your medication protocol has been rather erratic so that is possibly skewed
How much levothyroxine were you taking when you stopped taking it?
Have you optimised vit D, vit B12, folate and ferritin?
Vital to support thyroid function.
Gaining weight on levo (NHS doc) usually means the dose needs to be increased.
Assuming the labs you posted are reliable and current then you are very overmedicated and this could account for your symptoms.....overmedication can result in much the same symptoms as undermedication.
T4/T3 treatment can be a tricky balancing act and your private endo hasn't managed that with Erfa.
Your antibodies are low so no indication of Hashi"s
Your cortisol is high but I'm having difficulty reading the figures? Weight gain may be a consequence.
Correct thyroid medication may help cortisol level
However until we know exactly how much hormone you are taking it's difficult to be more specific...please post your dose for more comment
I was on 2 grains at 7am and 1.5 grains at noon. I've had to stop it for a while cause I was feeling so awful.
I tested at 9am before I had eaten or drank anything. I had last taken Erfa at noon the previous day.
I do believe I have a conversion problem as T4 seems to build up in my system. It works well initially then as time passes I slowly get worse/gain weight - even with dose adjustments. And when I stop taking it I feel better within a week.
I had reached 150mgc of thyroxine when I stopped taking it in 2020.
I've resent my results into the chat and hopefully they are clearer.
Thank you for your help - I really do appreciate it.
Were you on that dose for at least 6 weeks before testing...I ask because you said you had to stop it for a while.
Your actual testing protocol was fine.
On the dose you detail you are taking a daily total of 122.5mcg T4 plus 28mcg T3 which is a whopping dose....if I've correctly understood your post
Firstly you are overmedicated with an FT3 of 113.51% thro the ref range, as I explained above
You must be converting some of the levo to reach that level
No wonder you are feeling dreadful!
I do believe I have a conversion problem as T4 seems to build up in my system.
Maybe not specifically a conversion problem....but a problem with T4 nevertheless.
Your labs are showing that it's T3 that is "building up"
Some of us ( myself included) just do not tolerate levo. I wonder if this might be your problem. It left me barely able to function after about 20 years so I decided it had to go
I started T3-only and that worked....but the dose has to be correct!!
I don't think Erfra is the correct medication for you, and that's why you are having problems with T4.
I'm not medically trained but I'd suggest you move to a T4/T3 combo instead of Erfa....I've had to travel a long bumpy road to find my own therapeutic dose!
I'm actually terrifed of going back on to T4 - it's never worked for me. Problem is where does that leave me? I had believed T4 was blocking the receptors so T3 couldn't be utilised properly. And you got the dose right above. One thing that always baffles me is if I'm on too much thyroid hormone why am I continuing to gain weight at such an alarming rate?
Some of us have bodies that just don't follow the "rules"....I live with one!!
You may have a high serum T3 level but does that translate into adequate cellular level where T3 attaches to T3 receptors at the nuclei, and becomes active
There are no tests for cellular level T3 ( except post mortem!)
Perhaps you have cellular rather than glandular hypothyroidism
Have you been on other prescription medicines? During an undiagnosed hyperthyroid phase others noticed I'd lost weight. A decade later I'd been taking an antibiotic known for increasing appetite and I'd put on weight. I can't remember if I told my GP about the heat intolerance I was experiencing, or my weight increase was noticed, but I had my first thyroid test, which was lost or botched and not repeated until six years later, by which time I was feeling hypothyroid.
Some antibiotics are known for causing mitochondrial dysfunction, resulting in fatigue and weight-gain, but obesity then causes mitochondrial dysfunction, itself:
Hello again. When I was on 125mcg of T4 and 20mcg T3 (morning) and 10mcg T3 (evening) my FT3 was 5.0 (ref 2.4-6.0) and FT4 was 10.4 (ref 8.0-19.1). This was for a trial earlier this year when we thought Erfa wasn't working for me. I actually felt worse and wasn't keen on trying T4 again after my years of feeling awful on it
Hi, I don't have any answers for you but can confirm I am in the exact same boat as you. I haven't been put on anything else, even although I have told my Endo innevery conversation that I am picking up weight foe no reason and I am exhausted. I have gone down the private route for most of my issues but not all. The thyroid issue is still under NHS as is my wait to see the sleep clinic. I hope you find the answers as do I.
Do you know if you have one or more of the MTHFR genes? I do, and apparently makes one a poor converter. You need to research but it may require methyl B Bits (specially B22 and folate, NOT folic acid.
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