In January 2021 I came forward to my GP and said I was self-medicating with NDT under supervision (Dr P originally, then I managed via blood tests myself) for the past six years, but would like to return to 'approved' T4 therapy and not be 'out in the cold'. They have treated me appallingly since, that is another story, but in May 2021 the endo at Kingston Hospital reviewed my 10 years of blood test results of TSH, T3 and T4 and agreed monotherapy is not for me, so started me on T4/T3 combo.
In January 2021, I was generally feeling well on NDT. I was taking 1.75 grains of Nature-throid = T3 15.75mcg and T4 66.5 mcg twice a day.
Stupidly I took my dose just before my blood tests ordered by my GP in January 2021, and the results showed TSH undetectable, T4 21 (within range) and T3 15 (out of range but one hour or so after dose). A predictable response ensued from the GP but it did get me seeing the endo.
Since then, it's been an incredibly difficult year of exhaustion, yielding me unable to drive or take care of my disabled son on many, many occasions as the GP drastically reduced my dose then the endo slowly built up the combined therapy. It's been truly awful. And my results have mostly been below range for T3 and T4, TSH fluctuating just under range.
In February 2022, one year on, I am on a dose of 125 for T4 and 30 for T3 (spread throughout the day into 3 doses of 10 each). I feel terrible and have enormous slumps as the T3 wears off between doses. I take one at 7.30am, by 12 my eyes are closing, so I take another dose, by 5 the same, I am shattered and take my final dose of 10 for the day. By 9pm I am a zombie and when I wake up at 7am I am unable to move as I am so tired and it takes an hour or so for my T3 dose to kick in. I am really struggling.
February test results were: TSH 0.05 (endo says this is in range), T3 2.8, T4 10.1.
The T4/T3 dosing in February 2022 is almost identical numerically to the NDT dosing I was on in January 2021, but with vastly different outcomes in terms of my health, which is terrible, and blood test results, which are at opposite ends of the scale - ie I was 'over' medicated in January 2021 on this dose of NDT (albeit having taken my medication just before my blood test), but a year later am undermedicated according to T4/T3. Plus of course, I have severe symptoms of exhaustion.
If anyone can shed light, please do. Also, any advice on how to take this up with the endo who in the last telephone consultation said my symptoms are just as likely to be due to menopause....
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Can you add the ranges to your results, please? Results without ranges are meaningless because ranges vary from lab to lab.
T3 does not 'wear off'. It's not aspirin. The half-life of T3 in the blood is about 24 hours. That means that if you take 10 mcg in the morning, by the following morning there will be 5 mcg left, minus what got into the cells. And, what gets into the cells stays there for about three days. So, as you are taking your T3 three times a day, the level in both blood and the cells remains more or less constant.
Have you had your nutrients tested: vit D, vit B12, folate, ferritin? And how about cortisol? Has that ever been tested?
You're taking quite a high dose of hormone, yet your results don't, at first glance, look high. Of course, I could be wrong because there are no ranges. But, it's possible there's some sort of absorption problem in the gut. Do you always take both T4 and T3 on an empty stomach, one hour before food and two hours after? Do you take any supplements or medication at the same time as your hormone?
January 2021 TSH 'suppressed' (no figure supplied), FT4 21 (range 12-22), FT3 15 (range 3.9-6.7) - 15 mcg dose of T3 taken 90 minutes prior to blood test.
February 2022 TSH 0.5 (range 0.27-4.2), FT4 10.2 (range 12-22), FT3 2.6 (range 3.9-6.7). No T3 taken since previous afternoon.
Blood tests taken between 8.15-8.30am.
I am extremely careful with timings before and after food and don't take supplements now I have to take 3 doses of T3 between 7am and 5pm as I just can't fit them in/remember them around meals and caffeine and the one hour/two hour before and after meals to spread-out doses.
I haven't had my general vitamin profile tested in a few years; they seem to come back normal as I am regularly requesting help with tiredness. I have a diagnosis of CFS.
Re: adrenals, I don't have my old tests to hand, but I had 24 hour saliva testing around 10 years ago, two tests 18 months apart. They showed almost no DHEA nor cortisol, I was right at the bottom of the curve, way out of range with levels that you would barely see at night let alone during the day. My GP said the NHS doesn't accept these, as did the endocrinologist back then; did short synacthen test that the GP said showed nothing of note.
I eat a lot of fruit and veg plus wholegrains and lean proteins, as both for my son's sake and mine I need a healthy diet. I walk 13K steps daily on average and try to do a bit more with stretches, a bit of intensity here and there etc but I'm very stiff.
January 2021 TSH 'suppressed' (no figure supplied), FT4 21 (range 12-22), FT3 15 (range 3.9-6.7) - 15 mcg dose of T3 taken 90 minutes prior to blood test.
OK, so you have a false high FT3, there. But, that doesn't account for your low TSH and very high FT4.
February 2022 TSH 0.5 (range 0.27-4.2), FT4 10.2 (range 12-22), FT3 2.6 (range 3.9-6.7). No T3 taken since previous afternoon.
Things have changed drastically, and you are now very under-medicated - although I suspect that the gap between your last dose of T3 and the blood draw was more than 12 hours, which should be the maximum gap. So, a false low FT3. But, given that you're taking 30 mcg, there would definitely appear to be an absorption problem. Could be low stomach acid, or leaky gut. Do you have Hashi's?
I haven't had my general vitamin profile tested in a few years; they seem to come back normal as I am regularly requesting help with tiredness. I have a diagnosis of CFS.
A lot can happen in a few years! Your really need it done again. Especially as your FT3 is so low.
Besides, 'normal' is meaningless. To a doctor, it just means 'in-range', but some of the ranges are so vast they cannot possibly be 'normal' all the way through - 'normal' if far from being the same as 'optimal'. And if your iron/ferritin is low, coupled with that low FT3, you're pretty much bound to be tired!
Ignore the 'diagnosis' of CFS. For a start, it's a syndrome, and you can't 'diagnose' someone with a syndrome because it isn't a disease. A syndrome is a collection of symptoms. Syptoms have to be caused by something. And, last time I looked, it was the doctor's job to find out what is causing them! And, I don't think you have far to look: low T3. Problem is, doctors know nothing about hypo symptoms.
As for adrenals...
did short synacthen test that the GP said showed nothing of note.
OK, so that means that your adrenals are capable of working normally. They just aren't. So, it could be that they're not getting the correct stimulus from the pituitary. Or, it could be the low T3. So, I suppose GP and endo just shrugged their shoulders after that and did nothing? The make me sick. In all senses of the term!
OK, so the first thing on the agenda should be to find out why you are not absorping all that T3 you're taking. And that necessitates a thorough investigation of your gut. Wonder if your GP is up to organising that.
I'll see if I can get testing for my vitamin etc levels from my GP; if not I'll do it privately. I first went down the combined route with Dr P 10 years ago as my TSH was going up and up, the GP had me on a dose of 250 for levothyroxine and the endo said all was fine, that I had CFS and sent me to the Sutton CFS clinic.
You are spot on, I got the disinterested shrug regarding adrenal results that the lab wrote up as 'exhaustion' stage and which I showed to endo/GP. I wish this was better understood.
I never know what is meant by Hashis, although Dr P said that's likely. I had an ultrasound of the thyroid gland last year which the consultant said came back as 'ragged' - the gland, not the scan. The gland is small with nodules and uneven. Don't know if that = Hashis?
The resistance from my GP to all of this, the sheer lack of knowledge (they were planning thyroid suppressant therapy for me), the lies they have told, their refusal to sign my free prescriptions form etc - this has all greatly damaged our relationship - but perhaps they'll agree to a vitamin profile.
I am still really confused why the same doses of NDT and a year later of combined T3/T4 lead to such different results across 12 months. But hey ho, the joys of the endocrine system. BTW, I've been an academic for 25 years, have a PhD, supervise multiple PhDs, know science inside and out, and still don't understand why something as prevalent as thyroid disorders are so poorly understood. I have some guesses, but that's another story....
I never know what is meant by Hashis, although Dr P said that's likely.
Hashi's is an autoimmune disease in which the immune system attacks, and slowly destroys the thyroid. It's usually diagnosed by high TPO and/or Tg antibodies. However, 20% of Hashi's sufferers never have over-range antibodies and are diagnosed by ultrasound. Sounds like that is your case.
Actually, as your gland has shrunk, it's more likely to be Ord's thyroiditis, than Hashimoto's. The difference is the size of the gland. With Hashi's, people have a goitre. With Ord's, the thyroid shrinks. But the end result is the same, and the means of diagnosis are the same. As is the treatment: thyroid hormone replacement.
know science inside and out, and still don't understand why something as prevalent as thyroid disorders are so poorly understood. I have some guesses, but that's another story....
Yes, I know what you mean. If we're talking about doctors, the thing is, they are so poorly educated in the subject during their time in med school. Not only are they not given the full facts, but they are taught a lot of half-truths and even more down-right lies! They are told that hypo is 'easy to diagnose, easy to treat'. They learn that the TSH test tells them all they need to know, and that all they have to do is give levo, increasing the dose until the TSH is somewhere within the range, doesn't matter where. In short, they are taught that hypo is no big deal, and that we, the patients, are all a bunch of snivelling, attention-seeking hypochondriacs, with not a brain between us.
The big question is: why is their education so bad? Because all the information is out there, if you look for it. The internet is bulging with scientific papers and studies and research, but doctors - once they've left med school - never look at them, and probably wouldn't believe them if they did. What they learnt in med school is sacred and not to be messed with!
So, why aren't med schools teaching all this latest research and knowledge. Well, I was told, some time ago, it was because Big Pharma controlled what was taught in med schools, as they fund them. And BP does not want doctors treating hypo patients correctly and making them well. Because if they did, BP would lose a lot of money with all the drugs we would no-longer be taking - statins for a start! And, then there are anti-depressants, Beta Blockers, PPIs, etc. etc. etc.
However, someone who works for BP, told me on here, that that is just not true, BP has no in-put to what is taught in med schools and does not finance them. Whether she really knows that - and how she knows - I have no idea. But that's what she said. I don't know who is right, but what other reason could there be? As I see it, the only possible explanation I can see is that there's money in it somewhere, for someone. Who knows.
Thanks for the thing on Ord's thyroiditis as I hadn't heard of that
One of my theories re: 'science' is the weaknesses of the scientific process which encourages 'inside the box' thinking. All science is based on the science that went before it. This is then the paradigm in which many/most scientists in a field work. This is quadruply so in the world of medicine (I am actually a social scientist where we value people's accounts of their lived experiences). In medicine, where lives are at risk, the medical paradigm is in place, insurance is a major consideration, vested business and government interests prevail, professional capture dominates, and also to an extent IMHO doctors rather than trained scientists do the research (a bit controversial that one, but there you go) etc etc, then inertia becomes more likely and paradigm shift longer to enable (see for example the glacial recognition of the role of diet and lifestyle in health outcomes).
Scientists want careers in the same way as anyone else; they want to rise through the ranks and earn more money. Doing research 'outside of the box' is something you may see claimed across most academic fields (you can't publish research if it's not making a 'unique contribution to knowledge'), but is it really outside of the box, or is it really just rooted in all that has come before and it's claimed to be different? Now, add the various factors I have described at the end of the last paragraph, and no scientist wants to work in 'controversial' areas. They want to make their name, but most likely safely, recognisably and in a way that will increase their authority. Stepping outside the prevailing paradigm is incredibly risky and I believe this is particularly the case in medicine, again for some of the reasons I've described above.
Add to this the peer review process and you have a car crash. You have to try to get funding to do research outside of the established mindset by marshalling evidence that this is something worthy of funding and scientific endeavour. Well, good luck with that in the field of the thyroid as we have four decades of 'science' looking at the wrong people, the wrong tests, the wrong treatments etc because they are mere outliers on a bell curve that don't require explanation. You will struggle to find peer reviewed articles to support your arguments that research is needed here. You will struggle to find data to support your claims going into the research before you set up your own research and find suitable participants. IF you get funding, or go it alone, how will you find research participants from outside of the bell curve? How will you set up robust experimentation? In the medical sciences, positivistic methodologies predominate which value only quantitative statistical data. If you interview 100 people for their EXPERIENCES, rather than look at the numbers on a page of data that have undergone regression, t-tests etc, under the medical paradigm, such data are less likely to be taken seriously, even if everyone is saying the exact same thing (this is my area of expertise as a qualitative researcher).
THEN, with your findings, you have to find peer reviewed journals to publish your research. But guess what, most of those reviewers are rooted in the old paradigm and so.... yep, you'll struggle to get your work published in peer reviewed journals. Therefore finding your science confined to the internet, lesser publications and magazine articles.... And so the cycle continues.
Now, with that off my chest, I have a Phd thesis to review!
That's fantastic, thank you for that. I'm quite heartened that stuff is slowly getting off the ground - there is much more available now than when I was first arguing my case a decade ago!
The hormones in NDT are bound to thyroglobulin so that you get a steady dose all day. In cytomel, there is no thyroglobulin, so you have those peaks and valleys thru the day. That's why with cytomel, you have to take it a couple times a day. Also, they don't both work well in some people. One may work better than the other. Even different NDTs work differently, in my personal experience.
Thank you, I had a feeling they both work differently but was unaware of the background. If the endo at Kingston Hospital is prepared to put me on T4/T3 combo, I wonder if he would be prepared to change me to NDT. They're testing me again in 3 months' time; if my T3 and T4 remain that low, I'll ask if he's prepared to let me go back to NDT but under his supervision this time, not going it semi-alone.
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The half-life of T3 in the blood is about 24 hours. That means that if you take 10 mcg in the morning, by the following morning there will be 5 mcg left, minus what got into the cells. And, what gets into the cells stays there for about three days. So, as you are taking your T3 three times a day, the level in both blood and the cells remains more or less constant. 
How much T3,t4 body still produce when on NDT?
Do I need to reduce my NDT or extra T3?
T3 too high on ndt
New blood results T3, T4, TSH
