I'd really like to get some advice re my results. I have been on a long journey (26 years) and never been able to tolerate thyroxine. After investigation it was discovered my reverse T3 was high and likely caused by me having the DIO2 variant.
About three years ago I went private and absolutely thrived on Erfa. The weight fell off without effort (about two stones) in a matter of months and everything was dandy.
Sadly though, about a year ago the weight started going back on, despite a healthy diet and daily exercise - I've never been so healthy in my life before) and I'm now two stones heavier again with the bulk of the weight on my tummy and top of thighs). Bloods look optimal and doc is puzzled. He tried me on metformin two weeks ago thinking it might be insulin resistance and the weight is continuing to go on and I feel very hypo. Can I please get your thoughts? I thought I had a breakthrough and now I feel worse than ever.
Thanks for listening.
Tired
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Tiredofthis77
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For cortisol do a 4 or 5 point diurnal salivary cortisol test - you can buy one from regenerus labs to do at home.
Re leptin I’m not sure how it can be measured- it’s not something I’ve personally had to go down the route of as weight gain and tell tale leptin resistance symptoms are not things that I’ve struggled with. I struggle to keep weight on! But I’ve been reading a lot about leptin resistance as cause of difficulty in losing weight amongst hypos. There’s a whole process for reversing it- avoiding pro inflammatory seed oils, processed food, refined sugar.. the usuals for optimum health. More protein eg 1 gram per pound of desired body weight per day.
Do you have Free T3 and Free T4 readings and ranges please - what time lapse was there between last dose and the fasting blood draw and are you still taking Efra - how much - and do you split your dose or take it all at once ?
Did you manage to get tested 5 months ago as suggested for IGF-1 - insulin and cortisol ?
Thank you for responding. I posted the Free T3 and Free T4 in replies as they wouldn't attach to my original message. I took the last dose of Erfa at noon the previous day and was tested at 9am the next day. Erfa dose is 2 grains at 7am and 1 and a half at noon.
This results show different and more realistic blood test results when taking NDT -
as when on NDT we track on the T3 and your T3 is around 72% and proportionately higher in its range than T4 which I've got coming in at around 22% -
were you feeling better whenever this blood test was run as I can't see a date ?
We generally recommend taking a blood draw around 12 hours after taking NDT so these other results show a false low -
which appear to be a T3 of 6.60 ( 3.10-6.80 ) and a T4 at 19.20 ( 12 - 22.00 )
I'm sorry but I've no knowledge of the cortisol reading nor the IGF - ( was hoping to learn something and why I asked the question ) and fully understand - being in a range - doesn't mean as much as optimal and feeling well.
I was actually feeling unwell when the above results were taken. I always feel better when T4 is nearer the top of the range so my endo increased my Erfa following this.
Thank you for your help! When I first started on Erfa it was great. I lost almost two stones and felt human again. When things started going wrong again, resulting in putting all the weight back on, I was tried on T4/T3 combo. I have never been able to tolerate T4 in the past and it was the case again at the tail end of last year.
I been taking NDT for the past 6 years self sourced as refused on the NHS - and I'm with Graves and post RAI thyroid ablation 2005 -
NDT has relieved my crushed mental and cognitive functions which I experienced when around 10 years in on T4 monotherapy - and not aware it has had much impact on my overall energy levels -
Maybe an hour a day and 2 hours at the weekend playing tennis is a bit much for you - as some - if not all of us - need to pace ourselves.
and I think I have seen articles in Harmony magazine from Thyroid UK that suggests a lot of cardio may cause challenges with metabolism.
I’m no expert I just know I get hungrier and hungrier and tireder and tireder and don’t lose any weight if I over do it.
I know one thing for sure, dieting doesn’t work. Ive tried all sorts, currently trying higher protein and focus on exercise that builds muscle and ditching the scales, I’ve just tested and my levels are in range and my trousers are a little looser so that’s something 🌱
With any physiological stress ( emotional or physical ) inflammation, depression, ageing or dieting T4 to T3 conversion is reduced and T4 will be preferentially converted to reverse T3 which acts as a competitor inhibitor of T3 - reduces metabolism - suppresses T4 to T3 conversion and blocks T4 and T3 uptake into the cell.
I’m stressed up to the eyeballs all the time just now caused by work and the way I’m feeling/looking. I had high reverse T3 when I was on thyroxine alone. Erfa seemed to fix but now I feel like I’ve been here before. I keep reading that rt3 isn’t relevant but I do have a conversion problem. I’ve spoken to my doctor about this before but he said T3 on its own isn’t a good idea. I’ll take a read of the article and will book a test. Thank you
Reverse T3 is a natural process and we all make some - it's excess, unconverted T4 which the body needs to loose to keep body function balanced and it ends up being broken down in the body and excreted.
I tested mine in 2016 and my reverse T3 was well over the accepted range -
I had been very unwell dealing with the consequences of RAI treatment ( Graves post RAI 2005 ) and 10 years on T4 monotherapy and refused both T3 and NDT through the hospital in 2017/18.
I have been self medicating NDT 6 years and my dose of T4 now 1/2 that which I was previously taking - and presume my reverse T3 has dropped / levelled off and now probably low in the range -
On NDT my Free T4 reading is around 25/30% with a T3 reading 90/110 % through ranges - which is the total opposite of my readings when on T4 monotherapy - as then my T3 was only ever at around 25% with my T4 at around 100/110%through its range.
I would imagine your high reverse T3 has also now reduced since you are taking NDT
It reads you are carrying a lot of stress, upset and exhausted, so these will negatively impact your health and well being -
Efra did work - and now it doesn't - what's changed ?
There have been many complaints about Erfa, starting about ten years ago when production was moved from Belgium to Spain. At the time, the STTM posted photos with pills looking different in colour, with some looking blotchy. The company denied reformulating it. The same complaints have since been made about most if not all brands of NDT, most recently Thyroid-S. But the OP must have taken the ’new’ Erfa so I don’t think that is an issue here.
Yes - I am aware as I take Thyroid S and have been unable to use around 4 bottles of prefixed 22 batches - and now on prefixed 23 batches - back to my ' normal ' again.
If rT3 is high I’m not sure where I go from here. Doc says T3 only is not a good approach but not sure what else I can do if T4 is causing the problem.
The only thing that’s changed is my dose has increased over a period. I hit the sweet spot, lost a lot of weight without trying and boom, I started to feel hypo. The question is had too much T4 built up in my system, converted to rT3 and blocked cells or was I genuinely hypo? This was the same over years of trying T4. It worked initially then I couldn’t tolerate it, I felt toxic and when I stopped taking it I felt better and pretty good after a week had passed.
The symptoms of over and under medication can be very similar -
You found your unique set point once - hence feeling well and losing the excess weight - it took me around 18 months on NDT before I noticed my weight loss and I've stayed on the same dose and stable.
Maybe you are taking a little too much NDT now - maybe not - only you can know -
but carrying this amount of stress and working out every day with a double dollop on the weekends reads like a gruelling regime and when not optimally medicated likely compounding your health issues further.
A few years ago, I read the book ’The Paleo Thyroid Solution’ by thyroid patient Elle Russ. She took NDT for years and felt great, only to end up back at square one. She had to switch to T3 only to regain her health.
My experience is simular to yours. Back in 2015, I lost over 4 stone/66 lb/30 kg on Thyroid-S and Berberine for insulin resistance. I did not diet or exercise more than usual. I kept my new weight until 2018 when I started feeling hyper and had to lower my dose. My free Ts dropped significantly but I could not take more thyroid hormone without feeling hyper. Over the next six months, I regained all the weight lost and some more. Doctors said it was physically impossible without overeating. Just shows how much they know.
I notice that I seem to need less T4 and more T3 as I have become more hypo due to loss of thyroid tissue (I have atrophic thyroiditis).
RT3 is a controversial subject. Some will say it is inactive and does not block T3 from entering cells, while others say that it does. But some people feel better on less or no T4. And some feel great on NDT and first and then end up symptomatic again. I often wonder what the point is of taking a lot of T4 the body cannot use…? The late Dr. Peatfield said the body can become toxic with unused T4.
As I understand things you can live without T4 but you can't live without T3 :
T4 - is inert, a pro-hormone - and stored in the body waiting to be converted into the active hormone - T3 - when and if needed - and if not needed it becomes reverse T3 and ultimately broken down in the body and excreted.
My T4 is now only around 25% through the range with my T3 at around 90/110% :
I'm post RAI thyroid ablation 2005 and without a fully functioning thyroid and with no natural thyroid hormone production of my own - on ' manual ' rather than automatic control -
and as I run a low T4 - there is no risk of my becoming hyper as I'm not carrying any excess thyroid hormones and converting well into T3 the 57 mcg T4 content in my daily NDT dose
However I'm likely at a very different stage in my life - 77 - retired, living alone and having no pressure put on myself apart from the rain dictating when I need to mow my lawns !!
i have read that without a thyroid it's likely you do not need so much thyroid hormone replacement.
Bed by 10 up at around 5/6 am and better for a 10 minute catnap after my main meal at around 1,00 pm - and my BB time of day is in the AM :
Wow, I would have thought it was the other way around…!
Glad you found something that is working for you😊. Given the price of NDT, that must be a relief. Dr. Peatfield says in his books that a common replacement dose of NDT is 1-2 grains. That always sounded low to me…but maybe he knew what he was talking about…!
Oh - I read the book but don't remember reading this but I was very unwell at the time ( RAI thyroid ablation consequences ) and my dyslexia the worst it had ever been in years -
I was writing everything out I thought relevant - several times over so to try and remember its relevance - just like you would do when in detention at school -
I've around 4 x A 4 lined school exercise books full of ' my light bulb moments ' which all came on together when I eventually started NDT and then found myself with enough T3 that my dyslexia not a constant challenge, the suspected dementia gone, and my health and well being slowly improving over around the next 18 months.
Perimenopause is based off symptoms rather bloods as these are not reliable due to constant change of oestradiol levels. Symptoms of peri vary but this a just a few of the common ones. Anxiety, stress, mood swings, depression, anger, lighter/ heavier/ more frequent/ less frequent periods, night sweats, hot flushes, aches and pains, weight gain with no change of diet, hair changes/loss, loss of libido..the list goes on.
I'd never even heard the word perimenopause when I had obviously been going through it so knew nothing and blamed my thyroid when it was my sex hormones causing the issues.
Have a read up and learn as much as you can. Sex and thyroid hormones can have a rocky relationship and I feel we sometimes blame thyroid when actually perimenopause is the culprit or later on post menopause.
Just something to keep in the back of mind if things start to change
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