I’ve posted before and still don’t have all test results but am trying to work something out.
NHS test a month ago:
TSH 3.25 (0.38 - 5.33)
I did one private Thyroid test which showed these results:
9:30am taken
TSH 2.21 (0.27 - 4.2)
FT4 10 (12 - 22)
FT3 3.9 (3.1 - 6.8)
Then an NHS test ( no T4 for some reason)
6.30am taken
TSH 4.74 (0.38 - 5.33)
FT3 4.9 (3.8 - 6)
I’m currently taking a small dose of T3 (12.5mg per day). I miss a dose the night before the blood test, so last dose over 24hrs previous).
Two things, why is my TSH rising when my T3 levels look okay? Also, I’d like to start increasing T3 doesage again but am concerned that T3 levels are already fairly high.
I am still waiting on iron levels, Vit D, B12 etc. but wondered if anyone could explain these results? (I realise it would be helpful if I had all 3 thyroid results each time but this is what I have for now). Thanks in advance for any help 😊
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DeniseR
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Yes, I was in a higher dose but symptoms were still getting worse. I tried to increase but continued to feel worse. I thought I’d see if it would make any difference if I lowered the dose (a few months ago) . Definitely feel worse but still not sure if it’s because of the lower dose, although seeing the the TSH that high is pointing that way.
Thank you, you’ve reassured me that it’s worth trying to increase the dose gradually.
But I don't understand, with the results you posted, why you are on this dosing regime with no levo
Did you discover that you could not tolerate levo?
T3-only is the last resort after every other dosing protocol has failed
I need high dose T3-only (100mcg+) to function becauseI have a form of Thyroid Hormone Resistance
The thyroid tests were not devised for T3-only so we can only use them as a guide rather than an accurate marker
Why is my TSH rising when my T3 levels look okay?
Your FT3 levels are not OK....
FT3 3.9 (3.1 - 6.8) is only 21.62% through the ref range
This is abysmally low! Aim for around 75%.....though on T3-only we need to focus on symptoms first
TSH rises as hormone levels fall....it is a pituitary, not a thyroid hormone which signals the thyroid to produce either more or less hormone, but...
TSH is not a reliablemarker after medication is initiated so forget that and focus on the Frees
FT3, the active thyroid hormone, is the most important lab followed by FT4
For good health every cell in the body must be saturated with T3 by way of a constant and adequate supply...21.62% is not an adequate supply
You are clearly undermedicated
T3-only is not an easy route if it can be avoided we need to understand T3 and how it works at cellular level and to listen to our body for even the slightest change...and record those.
There can be a lot of trial and error involved!
If you want to continue down the T3-only route then you will need to very slowly raise your T3 dose...by roughly 2.5mcg every 2 weeks, monitoring and recording how you feel, until you reach 20 or 25mcg again ( depending on tablet size)
At that stage I suggest you test before increasing further.
Then you could increase by a quarter tablet ( 5 or 6.25mcg) every 6 weeks monitoring very carefully for signs of overmedication....racing heart, heat intolerance, hand tremors, anxiety etc....you will know the symptoms and must procede with caution
On T3-only you will probably need 50mcg or more
How did you feel previously on 25mcg T3-only?
You say you feel worse as you increase...this is likely the body telling you it needs more!
Unless you cannot tolerate levo then I suggest you consider a T4/ T3 combo because your body may be requiring some T4
Sorry it's a bit of a long rant but hopefully something resonates and helps.
We're all here to help...just ask!
PS
just noticed your genetic results....not clear....but result looks to be TT which means you have no Dio2 defect inherited from either parent so T4/ T3 conversion not impaired
Sorry, it’s such a long story that it’s exhausting to explain sometimes. I was initially diagnosed CFS & Fibro, also borderline hypothyroid. Around 20 years ago ish. I was ill for a few years ( seemed to start after pushing myself to do a 10k run, where an hour or two after finishing I was very ill with flu like symptoms). Anyway, all tests ‘normal/satisfactory’ but thyroid borderline low, so put on Levo. Levo made symptoms worse. Did my own research and read about T3. Thought maybe I have a reverse T3 or conversion issue, or something at a cellular level. Referred to Endo, who reluctantly agreed to trial a tiny amount of T3 ( I think it was 5mg per day) Symptoms went almost immediately but after a month or so, started to creep back in. I asked for increased dose. Endo said no, it obviously wasn’t going to work, tested thyroid, said levels all fine, I don’t need anything. So, I sourced T3 myself and gradually increased dose to 25mg which kept me amazingly well for several years until I started with gynaecological issues ( start of perimenopause I think). Since then symptoms gradually getting worse and now almost back to full symptoms. Not tolerating HRT well and another referral to CFS.
I’m just trying to work this all out myself again as otherwise stick feeling like I’m slowly dying (and wanting to!). I feel like T3 must be the answer again.
I have also contacted a private Endo today, to see if they will help, as otherwise nobody seems to make the connection between menopause and thyroid. Nobody wants to investigate thyroid issues further than the basics/easily explained. So it’s up to me to sort out again, if I can. With the fatigue and brain fog, I sometimes find it difficult to head my head around it all like I used to .
Sorry for the long story and I’m sure I’ve missed bits out but hopefully you get the gist and all help us appreciated. Thank you 😊
Oh wow Dippy Dame you have been through it! Although very different to my story, it also seems to be exactly the same. I’ve also lost my parents, moved several times and had a lot of stress in the last few years, including a miscarriage. I think all these stresses have added to my poor state. I actually read the article on low T3 syndrome in CFS very recently, it gave me hope that I was on the right path again.
Thank you so much, I will read further but thank you for writing about your ‘experiment’ with T3 and dosing. You’ve helped me to find the confidence to trust my instincts on this and begin again to increase my dose. Hopefully the Endo I’ve contacted will come on board for extra support too but if not, I’m used to DIY lol
Just reading posts today, I'm amazed about cfs, fibro having an effect on T3, I was diagnosed with cfs, fibro in 2005.
After a number of years of sheer hell by my gp not diagnosing me correctly, from 2014 when I got a diagnosis of subclinical hyperthyroidism, he kept insisting all symptoms were the menupause and my cfs, fibro, when I actually had hyperthyroidism, later on in 2019 diagnosed with graves thyrotoxicosis and had TT.
Put on the T4 medication but I struggled with really bad gut issues but T4 never did anything for my T3 level, it was alway in the toilet.
So I got put on T3, then back to T4 and back to t3🤦♀️
I just been taken off T3 again... Long story for which I have a number of posts up🤦♀️.
But no endocrinologist as ever mentioned my cfs, fibro, I just had a endocrinologist appointment recently, and she doesn't want to deal with me, so gp is referring me to one out of my area.
This post as got me thinking 🤔 if there is a link, why as not one endocrinologist mentioned it? 🤷♀️.... Ho wait.... Because most are usless, it's something I'll be looking into before my next endocrinologist appointment 👍
It's a controversial subject, not embraced by traditionists, but given my own experience I'm convinced that low T3 is the key....in many, but perhaps not all, cases.
T3 relieved many of my so called FM and CFS symptoms
I was once thrown off a fibro forum for suggesting that FM may be the result of low T3!!
You are absolutely correct....medics often don't know and it upsets their established beliefs about the conditions. Basically they are beliefs, not verified scientific facts.
I believe they don't understand T3... and it scares them.
I'm afraid, after a great deal of reading, I had to go rogue and self medicate to improve my health
Just a thought - have you tried Natural Desiccated Thyroid in the past ?
NDT is the original treatment for hypothyroidism and was successfully used for over 100 years before the science on blood tests, ranges and guidelines and you simply dose to the relief of symptoms.
NDT is derived from pig thyroids, dried and ground down into tablets referred to as grains - with each grain containing all the same known hormones as that found in the human thyroid gland - namely- trace elements of T1, T2 and calcitonin + a measure of T3 and a measure of T4 :
No thyroid hormone replacement works well until your core strength vitamins and minerals those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Just being in a range somewhere - being ' normal ' - whether it be thyroid hormones or vitamins and minerals is not optimal and we need optimal to be well -
I now aim for a ferritin at around 100 : folate around 20 : active B12 75++ ( serum B12 500++ ) and vitamin D around 100 :
I have considered NDT in the past but I’m a vegetarian, so it would be an absolute last resort for me. As much as I’d prefer a more natural option, I’d rather not go down an animal based route. Thanks though for the information.
I have previously made sure my Vit D, B12 and iron levels are going, although once going way above range with Vit D, due to no longer having NHS testing. I have to admit I stopped taking them a while ago when nothing seemed to be helping. I guess you have to get the complete balance right. Now I’ve had bloods done and have started already to increase my T3 intake, I’ll get back on the supplements. Thanks for reminding me 😊
I read that you need around 50 T3 daily just to function -
Obviously optimum vitamins and minerals and if you've not heard of Paul Robinson maybe check him out as he has written a couple books on recovering on T3 only :
Thanks, I’ve only recently realised how much T3 we need/can take. Probably due to the scare tactics of some doctors, I thought I was already taking a reasonable amount! Although it was fine for quite a few years, until
Menopause began to change my hormones I think.
I have read a lot of Paul Robinson’s stuff, he’s an absolute hero! Although of course, when I really need to understand these things, it’s made much harder by my awful brain fog.
Oh yes - I remember as I believed I was dealing with dementia and used up 4 x A4 lined exercise books - writing out what I thought I needed to remember - as if I was back at school and writing lines in after school detention !!!
Funnily enough - all of what I wrote when brain fogged was relevant and as my T3 increased - my brain fog decreased as did my dyslexia - undiagnosed hypo since a child.
I 'm with Graves Disease and post RAI thyroid ablation back in 2004/5 when I knew nothing and trusted the system in place -
I now self medicate with NDT - and stay away - as you probably guessed:
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TSH going up, normal T3
normal TSH and T3 but Low T4
Low TSH with normal T4 and T3
Thyroid levels ‘in normal range’, no dose increase 
Low TSH, normal T4 and T3
