Hi newbie here, I am 65 been hypothyroid for over thirty years and for the last 12 years been T3 only. For the last year I am suffering intense heat inside and short menopausal like hot flushes day and night. I am also diabetic but on low carb diet and no meds as no pre- diabetic so don't think its that so am wondering whether to try NDT. Any advice welcome as a bit unsure as I take 60mcg's daily.
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Hustler
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Hi Hustler, welcome to the forum.
I'm T3 only, too, and taking 56.25 at the moment, but have been on much higher doses.
Why did you decide to go on T3 only? Was it because you couldn't convert T4 to T3? Or because you couldn't tolerate T4? NDT contains a lot of T4 and not a lot of T3, so why do you think you would be better on that than T3 only?
Have you recently changed brands of T3?
Have you had your nutrients tested lately: vit D, vit B12, folate, ferritin? Do you take any supplements?
Hi it was because my liver stopped converting t4 and gp prescribed t3 with small amount of t4 and I just dropped the t4 and thought I didn't need it I suppose. I used to be on 80mcgs of T3 but dropped it a couple of years ago to 60mcgs as I lost around 4stone going low carb and thought I probably didn't need that much. My Dr just orders an annual blood test then rings and says did you know your tsh is suppressed and I follow with yes I know he says fine and that's it. Not on any supplements and when I asked nurse to test my vit d she replied it was top of the range in 2019 so it needs a separate test and we only do it every three years but I shouldn't think it will be low so decided not to ask for anything else. My b12 in 2016 was 258 and when I said I thought it was too low she said rubbish it's within the guidelines, so always feel a bit of a fraud asking for anything.
Oh dear. That nurse sounds a bit of a waste of time!
Not only was your B12 low at 258, it was so low you should probably have been tested for Pernicious Anemia! Honestly, these people know nothing about thyroid, othing abot nutrients and nothing about interpreting blood test results, and they are put in charge of our health! It's a wonder any of us survive!!!
Testing vit D every three years may be ok for euthyroid people, but it's no good for hypos. A lot can change in three years! Or even one year, come to that. And, just being in range is not always good enough. Maybe you could give this nurse this article to read:
pmj.bmj.com/content/94/1117...
But you really ought to get a print out of any blood tests you have so that you know what the results and ranges are.
I think you are right, Is there anywhere that I can get tested for all the above privately as I am happy to pay and supplement myself to see if I can stop this overheating. I tried lowering my T3 to 40 for a month but didn't stop the flushes at all but felt very drained and muddleheaded and lethargic so put it back up.I get your point about t4 so maybe NDT wouldn't help I just thought surely it has T1 and T2 in and I might be needing these but not really sure what they do anyway to be honest. I am probably just clutching at straws. Is your health spot on at the dose you take or do you supplement too?.
As greygoose has already said….B12 extremely low
Strongly recommend getting full thyroid and vitamin testing done
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test folate, ferritin and B12 at least annually
Vitamin D ideally twice year
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Day before test split T3 into 3 smaller doses. Taking last 1/3rd approx 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Thank you so much for the info, I will sort it in the morning for sure as I cannot go on like this.
I just thought surely it has T1 and T2 in and I might be needing these but not really sure what they do anyway to be honest
Ah, but does it really have T1 and T2 in it? That is just an assumption because they use the whole gland. But, the thyroid only makes teeny tiny quantities of those two hormones, most of the T1/2 in the body comes from conversion of T3 and rT3. And what little there is possibly wouldn't survive the pill-making process. If they were there in any noticable quantity, that quantity would be written on the label. So, I think we can take it that there probably isn't any.
As to what they actually do - if they do anything - I really don't know. I've read lots of theories, but if there's any truth in them, I don't know.
Is your health spot on at the dose you take or do you supplement too?.
I think my health is as good as it's going to get where thyroid hormone is concerned. I think a lot of damage was done by being left undiagnosed for such a long, long time, so it will never be perfect. But, I do take a lot of supplements, on and off. I try most supplements I hear of - as well as iron, vit D, B12 etc - just to see if they help. At the moment I'm trialing a black elderberry, zinc, vit c supplement. And I have to say I rather like it! 
I was reading an abstract the other which was about degradation products in levothyroxine tablets. The list of things that have been identified, albeit in extremely minute quantities, included T2 and T1.
That means, at this moment, I am aware of more published evidence of T2 and T1 in at least some levothyroxine tablets than in desiccated thyroid!
I'm confused. How did the T2 and T1 get into the levo tablets? Did the T4 convert all by itself?
It was either an impurity of the ingredient or the T4 simply broke down within the tablet.
For all that was wrong with Merck's handing of the changeover from lactose to mannitol, it was done at least partly because lactose and levothyroxine react with each other.
How very strange.
Do tablets really have to have lactose or mannitol? Is there not something less upsetting for everybody that they can use? Not that I'm affected by fillers, as far as I know. But, an awful lot of people do seem to be.
Definitely not! We do get Aristo (100 microgram tablet only) which has neither.
So why do they do it??? Seems rather like a deliberate act of sabotage.
If you look back to the late 19th and early 20th centuries, you can see discussions which read that pharmacies/pharmaceutical companies would throw in lactose to form tablets. It seemed to be something that had been used for years and therefore readily available and done without any research or investigation.
And that attitude towards lactose has continued ever since. It is only now, with highly sensitive assays, that the interactions of active pharmaceutical ingredients with lactose are being identified.
Lactose works physically, is mild in taste, and, in European populations, it is generally well-tolerated. And it is inexpensive.
The wider appreciation of lactose intolerance (even in those who can consume some other dairy products), the deeper understanding of interactions, the possibility of allergic reaction, have all added pressure to change. As has the vegan movement.
(Mind, it has long been argued that even those who are truly allergic to dairy can probably tolerate pharmaceutical lactose as it is so highly purified. And that the quantity of lactose is so small that lactose-intolerance doesn't matter. I am not aware of good quality and up-to-date research to back that up - there might be something. But I have my doubts.)
Unfortunately, Merck seemed to decide on more or less a straight substitution of lactose by mannitol. And I think we still don't really understand why that is such an issue - which it obviously is.
It might be mildly diverting to have a glance at my "History" documents:
helvella - Historical Context of Thyroid Treatment in the UK
Extracts of possible interest mostly from The Chemist and Druggist. These documents are currently still being developed.
Pre-1900 document
dropbox.com/s/h9mul6hdfqfew...
1900-1949 document
dropbox.com/s/a2wd7agpfcrcj...
1950-1999 document
dropbox.com/s/barcg7h4uj2nm...
2000 onwards
dropbox.com/s/dwgrmoxqj24el...
helvella - History of Thyroid Hormone Medicines in the UK
A collection of (hopefully) quite interesting information about thyroid hormone medicines, companies, brand names/trade marks, and much else.
dropbox.com/s/cag4qidukqeb8...
You ought to publish a book with all this information you've gathered! It would be helpful for doctors as well as patients.
Thank you for your interesting reply.
I don't think it is up to the standard required!
in reply to helvella
Of course it is. Just don’t split your infinitives 😂
You are telling me to never split infinitives?
in reply to helvella
No. I am telling you never to split infinitives 😂
On the tachometer in my car there is a line which is red. It is a red line.
If I press the accelerator to the floor, the engine speed rises. The needle passes the red line.
In common phraseology that is “I red-line my engine”.
I red-line my engine. You red-line my engine. He, she or it red-lines my engine.
With an infinitive “to red-line”.
Or, if I prefer not to interpose a hyphen, “I redline my engine”.
With an infinitive “to redline”.
But if I decide that I should write that as “I red line my engine”, what then is the appropriate infinitive form?
Obviously not “to red line”.
That is, I am allowed effectively to form a new verb by using an adjective, though used as an adverb, with a verb if they are joined with a hyphen or slammed up against each other, but am left stranded and confused if I prefer to use a space.
but am left stranded and confused .... Me too , i can only assume this is what the rest of you were learning in 'English' while i was reading 'Jackie' under the desk ... somehow i've got to age 55 without knowing what an infinitive is , split or otherwise...
in reply to tattybogle
Don’t worry Tatty. It’s only pedants who bother with such trivia. Sensible people are growing swedes
You’re allowed to use them now I believe by the grammar police - split infinitives that is. It hardly ruins the understanding so what’s the problem? Growing swedes is far more important in my book 🤣🤣🤣 as for Jackie I had completely forgotten that teen mag - memories of long lost school pals come flooding back to me ☺️
in reply to helvella
To red line; to redline
To black list; to blacklist
You are only stranded and confused because ‘red lined’ is not a grammatically recognised word and you’re not used to seeing or to writing it.
Your confusion and anxiety are actually caused by the fact that you know that you shouldn’t redline your engine and you are trying to obscure the stupidity of this habit by showing off your understanding of conjugation and parts of speech.
When you can tell me the difference between a transitive an intransitive verb I shall accept the profundity of your understanding of the English language.
In the meantime, I would be happy to proof read your book if you so wish, although I doubt that you will need much help.
🤣🤣🤣
That’s fascinating thanks for posting. I feel there should be some T2 and T1 in NDT given there’s T4 and T3 in it why would it not exist in the grains albeit in small amounts? Especially if Levothyroxine has managed to produce it - it’s not as naff as I thought!! But it failed on the T3 front .
I am not saying that thyroids definitely never contain any T2, T1 or T0.
I am saying that if they do contain some:
• It will be in small quantities;
• We have little evidence that any it does contain is stable through the processes of desiccation, production of Thyroid USP powder, forming into tablets, storage;
• We have little evidence that any that is taken in tablet form is then released in the gut and absorbed;
• We have little evidence that any that gets into the bloodstream does get circulated and then transported into cells.
In a human, the majority of T2 is formed by deiodination of T3 and rT3.
That occurs inside cells.
The amount of T2 and T1 that is found in blood is tiny. There is no validated test for T2, T1 or T0 in blood, though there have been measured in research.
There are three forms of T2 – only one of which is believed to be active. There are two forms of T1, only one of which is suspected to be active.
Have a look at the diagrams below:
Thyroid hormone metabolism and clearance
and
The supplementary T3-centric pathway map
on this page:
thyroidpatients.ca/2021/08/...
Ah but just because there’s little evidence doesn’t mean it must be so. No one seems to be studying it so what chance is there the any evidence would be forthcoming? Look at smoking and lung cancer there was once little evidence that they were related and smoking was recommended to help with breathing. I still can’t see why T4 and T3 would remain intact but T2 and T1 would vanish I would have thought they would be more stable than than T4 and T3 with less iodine to remove and therefore more likely to remain intact. The T 4 and T3 deffo get to my gut are absorbed and have an effect! Why not the T2 and T1(if it does do anything) assuming it’s there and I can’t see any compelling argument that they would not be there. And if one is a poor converter of T4 surely this would have knock on effects with T3 to T2 conversion. It can’t be beyond the wit of man to design some tests to try an investigate.
How did they give people T2 in the research if it’s so nebulous no one can find it? Someone must have found it and measured it and administered it in precise doses to the study subjects.
If I had tried synthetic T3 and T4, I could compare it to NDT for effectiveness and decide if NDT is superior, which could only be down to other things being in it. In studies NDT is always the most preferred therapy of the three (levo/ t4 and T3/NDT) . I know it’s supposedly all in our heads that it’s superior, but I simply don’t buy it as being nothing more than a mass fantasy.
But we do know:
• A large proportion of the T3 and rT3 that reaches our cells gets deiodinated to one of the T2 or T1.
• This will be in much greater quantity within our cells than any possible T2 and T1 content of desiccated thyroid.
You can manufacture T2 and there has been some research on its use. I offer this as one recent example though it is in the nature of an overview:
Physiological Role and Use of Thyroid Hormone Metabolites - Potential Utility in COVID-19 Patients
pubmed.ncbi.nlm.nih.gov/339...
We have confined the discussion to T2 and T1 (with just a few mentions of T0). But there are other compounds in the thyroid hormone tree.
I do see it as a problem that people claim that the benefits of desiccated thyroid are due to its T2, T1, sometimes T0 and calcitonin content. That is speculation. And very much ignores the other likely compounds (tetrac, triac, DIT, MIT, etc.)
When calcitonin is added to the list, we know for sure that calcitonin gets destroyed by digestive processes - which is a problem that is addressed by supplying it as a nasal spray. (Though rarely used since it appeared to cause or promote cancer in some patients.) But I do not know of any research as to whether in the form of desiccated thyroid any can reach our bodies.
Let me make counter-speculate. Imagine the advantages of desiccated thyroid are due to other factors. Such as:
• Its slower release;
• Compounds other than T4, T3, T2, T1 and T0 (whether or not in the thyroid hormone family);
• Precisely where in the intestine the released thyroid hormone gets absorbed;
• The difference in impact on microbiome.
If these factors, or others I have not even dreamt up, proved to be important, and the T2, T1, T0 claims proved to be irrelevant, then continuing to claim that desiccated thyroid contains all the hormones T4, T3, T2, T1 and T0 and that is why it works better would be undermined. Worse, it might have pushed focus onto the wrong subjects.
Yes it could well be something else in it, about which we know little at present, I can’t disagree with that possibility. I’m not sure all research focus is on T2 and T1 at the expense of the rest of the mysterious cocktail NDT contains. I rather get the impression that very little research is being done on any of it, after all most endocrinologists seem to believe T4 and TSH is all that matters and the rest is not worth looking at. What closed minds they possess. Thanks for raising it - it is fascinating.
It is interesting about the calcitonin and that nasal sprays can cause cancer. I was told taking NDT sublingually in the hope someone calcitonin was absorbed was a waste of time because the molecules are too big to enter via the buccosal etc mucosa, yet it can go in via the nasal mucosa. Are they really that different? More worrying to me can it cause oral cancer?
This was published some time ago - 2014:
Calcitonin (Miacalcic): increased risk of cancer with long-term use
Calcitonin-containing medicines should no longer be used in treatment of osteoporosis.
Interesting that in Brazil, Merck has kept the same formula with lactose. I wonder why?
I think that the first to change was France - followed by another 17 European countries a year or more later.
Obviously I have no access to the inner workings of Merck, but it seems feasible that they will changeover around the world in the next few years.
However, because there was a lot of anger from France, I wouldn't be wholly surprised if they have another option up their sleeve. For example, a wholly new formulation using neither lactose nor mannitol.
in reply to greygoose
🤣🤣🤣.
Well if NDT has T4 and T3 in it why should T2 mysteriously disappear when the other two do not? It is not as inactive as we have been led to believe in fact it’s very interesting. Also why does a healthy thyroid produce it unless it has value ? Not sure how good this person is but it’s quite an interesting item.
drchristianson.com/t2-the-u...
Given T2 is important in energy production and hot flushes appear to be energy production gone wrong In my opinion anyway, perhaps NDT might help Hustler but given the hassle of getting it I think it might be safer to stick to T3 if the dose is right and if T2 is minimal in quantity enough should be broken down from the T3. Despite being on NDT I still get the odd hot flush it’s worse in the winter and I am a decade out of the menopause🙄 it’s not horrendous or anything and I might get nothing for months. Eating seems to set it off, they call it gustatory sweating apparently, diabetics get it but I am not diabetic just hypothyroid.
Well if NDT has T4 and T3 in it why should T2 mysteriously disappear when the other two do not?
Because there's a hell of a lot more of the T4 and T3 in a thyroid. Plus, if the level isn't up to standard, it's topped up with synthetic T4 and T3.
Also why does a healthy thyroid produce it unless it has value ?
Well, that's the point, it doesn't make a significant amount. Even the quantities in the blood aren't that high. But the reason is exists at all is so that iodine can be recycled. When T4 is converted to T3, one atom of iodine is removed and goes back to the thyroid. When T3 and rt3 are converted to T2, one atom of iodine is removed and recycled. Etc.etc. etc. Which is why we don't need huge quantities of iodine.
I simply can’t believe most of the T4 and T3 in NDT has been added in as synthetics! And without them the NDT would do nothing. They are just a top up so the quality is standardised. I still maintain that nothing anyone had said here demonstrates that T2 (and T1) does not exist in NDT and therefore has no effect. How do we know the thyroid doesn’t make a significant amount of T2? Why is the thyroid wasting energy in making it? Actively making it as a separate process to it being broken down from T3, why? It was not that long ago that T2 was glibly stated as being a waste product of no value, but that clearly isn’t true. Perhaps with T2 less is more.
I really don't believe I said 'most'! I said they make up the balance. I said 'top up'!!!!!!!
Why is the thyroid wasting energy in making it?
But is it? Do you have any proof of that? Some conversion goes on in the thyroid, just like a lot of other places in the body. But in any case, it would be a really tiny amount that is found in the thyroid. Perhaps less is more with T2, but that doesn't mean that when making a thyroid into pills, the T2 and T1 survive the process.
I don’t think anyone really knows and nothing anyone has said here makes me differ in my opinion (or guess if you prefer) that some if it probably does remain in the NDT and may have an effect when ingested. The method of destruction has not been elucidated to my satisfaction by anyone here despite saying it happens with considerable sureity . It’s one more step than it not being destroyed and is nothing more than supposition with zero evidence. I am of the route of least resistance myself why add in some imagined process that destroys it?
I was making the point that the synthetic T4 and T3 additions are completely irrelevant to what is in the actual NDT itself and would be there if these synthetics were not added, as was the case long ago.
We must beg to differ in what we believe might be the case with T2 and NDT. Let’s face it nobody really knows…like so much else related to the thyroid that’s based on myth and trotted out as fact.
why add in some imagined process that destroys it?
Imagined? Well, I imagine that in order to dessicate the thyroid, they have to use a certain amount of heat, which could very easily destroy it.
Let’s face it nobody really knows…like so much else related to the thyroid that’s based on myth and trotted out as fact.
OK, but the 'fact' remains that if T2 and T1 were present in any meaningful quantities, they would be listed on the label, like T4 and T3. The 'fact' is that they aren't.
A very recent paper claims to detect T2:
Enrichment and Quantitative Determination of Free 3,5- Diiodothyronine, 3',5'-Diiodothyronine, and 3,5-Diiodothyronamine in Human Serum of Thyroid Cancer by Covalent Organic Hyper Cross-linked Poly-ionic Liquid
pubmed.ncbi.nlm.nih.gov/333...
In which it says:
However, few works have reported the detection of T2s due to their trace amounts.
The technique described is very new so needs to be considered in that context.
It appears most likely that the T2 in our bodies is primarily within cells. That it acts largely as an autocrine rather than endocrine hormone.
Sounds a bit like the old T3 arguments to me: it’s all in the cells, the thyroid makes hardly any, it’s just a waste product….but thanks for posting.
I wonder why T2 excess is a bio marker for thyroid cancer. There’s a bit of that in my family. Can hypothyroidism still have excess T2? It also seems to imply T4 can be directly converted into T2 but that can’t be right can it? Can two iodine’s be bashed off at the same time? Maybe I misunderstood.
Though with T3, we are very well aware that the thyroid produces T3, there is a clear ability to measure it in serum and cerebrospinal fluid, free and total, we know about the binding proteins. And that the thyroid can subsequently convert T4 to T3. Plus it has been available for over sixty years as a medicine.
Denying the role of T3 is simply ignoring well-founded and very scientific evidence.
Questioning T2 and T1 in desiccated thyroid is asking whether there is any evidence.
I am quite convinced of the importance of T2. But not of its direct use as a medicine. That is not saying it has no role, only that I am not aware of good evidence for it being used.
Yes it is better understood but for what if Endocrinologists are still declaring T4 is all we need despite all the knowledge we supposedly have about T3.
In fact to me T2 sounds a bit scary as a stand alone medication, so I agree with you totally on being suspicious of its use in this manner I think they hope it will be a cure for obesity which I think is not really looking at the problem from the right angle. I am sure a lot of hypothyroid sufferers become obese because they are not getting optimised medication or they are getting the wrong balance of medication. It happened to me on T4, I became huge. It resolved on NDT with no effort, no diets, no extra exercise or anything else. The dream of a magic fat pill seems a lazy approach to promoting good health in my book.
May be in time the truth of T2 will be revealed. I remain open minded about if it exists in NDT and has any effect.
I can testify to a lot changing very quickly when it comes to vitamin levels. I was on 10,000 IU of Vitamin D for about 9 months to get my blood level up to 60 ng/ml. It was 63 ng/ml on March 24. Then I dropped down to 5,000 IU to maintain. At my next test, 6 months later (Sept 24) , the level had dropped down to 45 ng/ml. So I am back to taking 10,000 IU for a while. See: grassrootshealth.net/blog/b...
Perhaps it's postprandial thermogenesis from a high protein diet?
I will look into that as to be honest never heard of it before, many thanks as anything that will stop this is definitely worth pursuing.
I have never tried it but back cohosh is popular as a hot flush reducer . Here’s some quality info about it :nccih.nih.gov/health/black-...
Tried that for 6 months when I started menopause at 50 and had severe hot flushes ( contrary to my gynaecologist saying I would not get a menopause after hysterectomy at 29 ) and unfortunately it didn't do a thing to help them.
Is that another Proustian sounding term for the gustatory sweating I get?
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