I read articles on stop the thyroid madness site. I always seem to read articles which say that T4 doesn't work and T3 is needed. For example they say this
Can I get optimal on just T4-only like Levo or Synthroid?
Hardly ever, we have experienced or observed as patients. And even when someone gets close, it’s not uncommon to still see problems, sooner or later. Sadly, there are too many life situations that can block the conversion of T4 to T3.
I wondered what the concensus was on this site about it. I don't see as much comments on this site about people struggling with T4 and the answer for them was T3 after years of taking T4.
I know everyone is individual I get that and understand that, but on their site there seems to me to be overwhelming support for T3 and not to waste your time with t4
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Well, I don't ever read it so I don't really know why, but reading what you have quoted gives me a pretty good idea.
I read another forum where they are very pro NDT and push that as the preferred medication over anything synthetic, including T3.
As you say yourself, everyone is individual so nobody can say that T4 doesn't work and we need T3. Many Hypo patients do very well on Levo only, probably not too many on forums because they're getting on with their lives, it tends to be the ones who struggle on Levo only that frequent forums etc.
That's not what Susie said. She said that sites often have their preferred methods of treatment which they tend to promote. Such as NDT on one site and t4 t3 combo on STTM.
Yes, that was true until all the brands of NDT ended up dodgy, either due to reformulations or unidentified problems that made them work less well. Erfa, for instance, denies its product Thyroid was reformulated; yet, it changed for the worse after production facilities were moved from Belgium to Spain. After the remaining US brands - WP, NP, Naturethroid - also stopped working, the STTM reluctantly started recommending T3+T4 combos - along with OTC products such as Thyro-Gold.
Not ALL brands of ndt are dodgy! Pharma would have you believe that though as theyve bern peddling that long and hard. Theyd make more proft on the synthectics that they love us on!
STTM can be useful but I find their views not always balanced. They believe that you are now best to add T3 in if the levo doesnt work. They are not recommending the ndts very much these days as they are unstable they say. They do say some people do well on Armour. Ive been on ndts for around 15yrs. I had to switch to Armour a while ago as mine was taken off nhs list as it was inconsistent in its level of active contents. Taken me a long while to adjust to Armour but I have now.
It really is a question of what works for you. Many do great on levo, my nextdoor neighbour is fine on levo. Quite a lot of the problems is GP ignorance on how to manage treatment optimally. Then there are a few of us who do need T3 adding in either via a synthectic or switching to a ndt. Then fewer still who do best on T3 only. The problem with treatment these days is ignorance, under treating and the inabilty to see and provide the diversity of options to meet all needs. And lastly the insistance of a TSH over 10 before you can even start treatment means many people are very ill by the time they get to that level so its a long way back up.
Sadly there sems little sign of this dire situation changing which leaves more people forced into self treating and self funding.
In fact, it´s the STTM thas has used expressions such as "all US brands of NDT have gone south". That of course does not include Thai NDT or OTC products (glandulars).
Yes indeed Purplecat I dont feel it has the considered responses we have on here. I like the fact we have diversity on this site, people pop on research etc, present differing virws, far more talk of balancing the other co factors needed. However I do like the fact you can look at the contents of each NDT, including fillers on STTM.....Ive not found that easy to find on one page elsewhere so that is my go to page for that.
The STTM used to promote NDT until all the brands were reformulated and said to work less well. Until then, the site always claimed that NDT was superior to other forms of treatment due it also containing T1, T2, and calcitonin.
They only started doing that recently. Until all the available prescription brands of NDT were reformulated and stopped working well, the STTM constantly claimed that NDT was superior to all other forms of thyroid hormone replacement, including synthetic T3. The reason for this was because NDT is bio-identical and said to contain T1, T2, and calcitonin as well as T3 and T4. The STTM only started supporting synthetic T3+T4 combos when there were no working brands of NDT left. Until then, the STTM was always saying that patients denied NDT were "missing out on something". The claims they make today are very different from the ones they made a few years ago, but all the problems with US brands + Canadian Erfa made that necessary.
Not all ndts stopped working well. People are doing well on armour, Thyroid S and Ive read of the German formulation is it Thyron....something, cant remember its name. There definately has been a problem with consistancy in some NDTs in recent years which is very sad. Am not sure why that is. But it has caused me to have to switch a few times!! Lol....still on ndt but back on Armour.....this time doing well on it in the end, but thats because thanks to this site I know far more about the other co factors that need optimising. And that seems to have made the difference this time round.
SeasideSusie thank you for validating that T4 is important . I had T T and from my personal experience I dose with both T4 and T3 and I can tell you if I don't have enough T4 I have all sorts of symptoms I can not sleep well and my concentration is not as good. It's like my brain is missing T4 . There is a very good reason why healthy thyroids make both T4 and T3. Granted that some thyroid patients that don't have any longer healthy working thyroids of their own do much better with T3 sole. That has to be respected as well. It's not one size fits all. But T4 most definitely has its needs by many of us.
Me too jgelliss . As someone who takes Levo plus T3 I find that I can't function with FT4 low in range, it has to be around 2/3rds through range and pretty well balanced with FT3, yet others function just fine with a lowish FT4 as long as FT3 is in the upper part of it's range.
Thank you SeasideSusie for validating that we all have our individual needs. It's a Tremendous Blessing that this Great Forum respects individuality. It speaks volumes.
I don't take NDT, I take Levo plus T3 so I tweak the doses of each to suit my needs, the fixed ratio of T4:T3 in NDT is approx 4:1 and it doesn't suit everyone.
It's Great that you found your very Best with T3 dose sole. Many are still trying to find their *Optimal*with either T4 and some T3 added or T4 sole . Or NDT if they can find one that works well. And finding Dr's that are open minded and out of the *Box* that are willing to prescribe the thyroid meds that work best for the patients. Glad your one of the lucky ones . Lets hope that everyone gets their thyroid meds that works *Best* for them.
Such doctors are rare, unfortunately...most are TSH-obsessed and many won´t even test free Ts...especially FT3. Many doctors I´ve been to over the years have admitted not knowing what T3 is. Which is why many have to self-medicate.I think one big problem is that hypothyroidism is considered easy to diagnose and treat by most doctors. They think that, as soon as we are on levo and the TSH is anywhere in range, we are "cured" and all remaining symptoms must be due to something else, like depression, stress or menopause.
When I had my first covid jab I was asked to fill in a form, and one question was "Do you have autoimmune disease"? I ticked the "yes" box and then specified "Hashimoto´s thyroiditis". I was then told "It´s not considered a disease"....
That is so ridiculous. Hashimoto Thyroiditis is most definitely autoimmune disease. I read somewhere that in Medical Academia Dr's get very little education when it comes to thyroids. If that is so is it a surprise that patients are not getting the right diagnosis and treatment? It's great that you took matters in your hands and self treated. I wish I would have done the same. I didn't know better unfortunately at the time.
It would seem that doctors are taught very little about thyroid disease in medical school, and that they are told to go by the TSH whether it´s for diagnosing or treating a patient. They are also told that levo is all that is ever needed.
Your so right. And what else I find that most Dr's are not well educated when it comes to nutrients. It's come time that the Medical Academia should revamp itself for the benefits of patients . When a Dr tells a patient that T3 converts to T4 . It tells you everything.
"It´s not considered a disease".... Yeah , right ... that would be why it entitles us to free prescriptions then .
I 've had this issue before, on a form for something or other , it's bloody infuriating .
I've also had a phlebotomist look down her nose and say "but you don't know it's autoimmune do you " ...... well , Duh " actually i thought TPOab of >3000 was pretty conclusive proof , yes"
One thing that annoys me is that it has loads of spelling mistakes. Especially of company and brand names.
I'm sure I make my fair share of typos, but I do try hard to correct them if they are noticed.
Having the same spelling mistakes and other errors for year after year implies a certain lack of care and attention to detail. Which is likely to affect far more than brand names.
Examples:
PHIZER for Pfizer.
Activas for Actavis. (And even then, out of date, now Allergan.)
Describing Sigma's liothyronine tablets as "Has an 18 on one side, a greek E on the other." When the reality is it has a Greek Sigma 𝚺 and 18, 19 or 20 depending on dosage.
Anyway, that is enough to make me very wary of trusting the site.
I agree, helvellyn. If you make a typo, you can correct it, but they don't seem to be edited. I have a thing about American English anyway. I don't like it!
Well .... for one thing , STTM site still hasn't updated it's writing on the now disproved idea that rT3 blocks T3 from getting into its' receptors in the cell nucleus .
So unless you understand the correct workings of this part of the system by reading up to date research yourself , then reading some of their stuff /opinions can be a bit misleading.
....... and for another thing ..... any site/writer that seems to promote an overwhelming preference that 'this' or 'that' form of thyroid hormone is 'best' for everyone , or 'won't work for anyone' ...... has totally missed the massive range of individuality present in the human body . especially where the HPT axis is concerned .
In real life ...... For every person who only got well on NDT , you will find another who didn't get better until they removed all T4 /NDT and tookT3 only ... and for each of them you will find another one who feels worse using any T3/NDT , and feels far better on Levo than they did with T3/NDT.
The reason for these differences are complex and nobody, not even the most up to date researchers understands the half of it yet.
Beware of anybody who tells you they do.
Beware of anybody who uses the terms 'always' . 'everybody' 'never' etc in thyroid explanations ... because as sure as eggs is eggs there will usually be somebody on this forum who's actual experience and blood tests would prove them wrong.
There are people on here who do best on Levo , people who do best on T3 only ,people who do best on NDT, people who do best Levo + a little T3, people who do best on NDT + a little levo , people who do best on NDT + a little T3..... etc etc etc .... and most of them have tried most of the options before the found the one that worked best for them .... and then just when they think they've got it cracked , and have ben fine on their hormone of choice for years .. something about them changes, and they have to start their fine tuning all over again.
Finding the best solution It is very individual , and for some it's not static .
Honestly , If it was as easy as "don't bother with Levo alone , just add some T3 to it" this site would not be half as busy .. we could just put a sign up instead.
there seems to me to be overwhelming support for T3 and not to waste your time with t4
As someone who needs high dose T3-only to function I would disagree with that extrapolation.
It depends on how each individual's system works.
To claim that T4 doesn't work, full stop, is nonsense ..however there are caveats
I think you would find that the vast majority of those with hypothyroidism respond well to LT4 monotherapy.
Their thyroid function is up to the job!
So,absolutely, you can get optimal on just T4-only like Levo or Synthroid?
The storage hormone T4 converts to T3 which becomes active once it reaches the nuclei of the cells throughout the body.
Optimal T3 is required for good health and LT4 can provide this
But...
For the cohort who have tried but remain suffering on LT4 present with various problems of varying intensity....help is required!
That help is exogenous T3, in some form. As the active thyroid hormone it is more potent and has a shorter half life of around 24hrs so is more difficult to manage than T4 with a half life of about a week. Levothyroxine is initially the best solution
When adding T3 we need to establish how much we need...and so on and so on.
I don't see as much comments on this site about people struggling with T4
I'm not entirely clear what you're suggesting here.
However, you will find some people here struggling with T4, not with the medication per se but because they haven't yet found their optimal dose....not because they need to add T3
Once on the correct dose those people recover and then get on with living, they don't need more help so don't generally hang around on the forum.
It is important when looking on the internet for information that what we read is from reliable sources....therein can lie the problem!
No, what I was wondering is this: a hypothyroid person takes levo because her thyroid gland is no longer working. So how can her "thyroid function be up to the job"?
I suspect this is a reference to the fact that the thyroid can and does take part in T4-to-T3 conversion - provided there is sufficient of the gland present and functional.
Those with some remnant thyroid function might well manage with a dose of levothyroxine that is lower than would otherwise be expected for their bodies. And manage without additional T3.
We would have to see what happens with the addition of small doses of T3 to be quite sure.
Ok, but the key words here are provided there is sufficient of the gland present and functional. That is an important distinction to make as most hypo sufferers have autoimmune thyroiditis which slowly destroys the gland.I have personally been wondering if that is why many Hashi´s patient - myself included - can do well on levo for years before needing T3...maybe the destruction of the gland deprives us of some T3 to T4 conversion. That is also the idea advanced by Paul Robinson in "The thyroid patient´s manual"...I believe he says that up to 1/3 of that conversion can be lost in the absence of a thyroid gland (TT, RAI, end-stage Hashi´s).
I agree - slow destruction of functional thyroid tissue will reduce any capacity for thyroid tissue to convert T4 to T3. And this might take many years to reach the point at which it is effectively totally non-functional.
No, but even end-stage Hashimoto´s without atrophication can leave the thyroid gland totally non-functional if all the hormone-producing tissue has been destroyed. That would not happen in the early stages of the disease, but after many years after gradual destruction.
assuming TSH is very low on Levo then it wont be doing anything much at all . agreed . But if TSH is, lets say "1 ish" then there is still some stimulation of the thyroid , so i would assume there is still some thyroid function going on , to whatever degree its capable of ?
No, I wouldn't assume that at all. If it took a TSH of 10 to get your FT4 to around 50% through the range, then a TSH of 1 isn't going to do anything at all.
Fair point .. i just don't like 'absolutes'But then that's why you can write clear sense in one sentence , and i take 15 to dither without conclusion. We all have our uses , so it's no criticism.
Probably no way to know for sure who is right here.. once on Levo there's no easy way to know which T4 came from the levo and which T4 came from the thyroid .
Shame they can't dye Levo T4 pink ,like Dyno-Rod do when they are trying to identify the source of a leak in your drains .
Most likely it's like everything else thyroid .... some do still get a bit of thyroid action and some don't and there isn't enough firm data to know who is who, or where the difference starts ...unless you remove the thyroid of course , but that would defeat the object.
I agree, there are very few absolutes in real life. And, most of the time we just have to generalise and accept that everyone is different. Which is why I often start my sentences with 'Basically...' implying that there are always - always - variations. I think that's pretty much the best that we can do.
So, I think that, basically, the thyroid does cease to function completely, sooner or later. How's that for hedging one's bets!
Are crows in the habit of digging up swedes and potatoes and eating them raw, then? Most crows round here just sit on fences waiting for someone to feed them.
...and then we have Worzel Gummidge a scarecrow (tattybogle in Scotland) in British children's fiction, who originally appeared in 1936 in a series of books by the English novelist Barbara Euphan ToddWorzel doesn't sit on the fence!!
Bogle refers to a spiritual being or the subject of a folk tale....so it scares the crows away from the precious tattie ( potato) crops
As in the old Scottish warning, "look out or the bogles will get you"
Can't think when I last saw a tattybogle standing in a field!!
Oh dear....just had my hair cut, must have lost my sanity with it!!
Does the thyroid completely cease to function and take no further part in the process in all instances after levo is added?
Is the gland completely out of the loop in that case?
I understand that levo is a replacement hormone but do even the smallest doses of levo that some patients need completely replace what a fully functioning gland would provide?
Would that small replacement dose not leave the patient undermedicated if the gland produced no hormone at all?
Does adding levo not compensate for the lack of hormone produced by the gland, rather than totally replacing it?
If that is the case then with the addition of replacement (or compensatory) levo/T4 the thyroid is then " up to the job". I haven't used the best terminology I admit .
Does adding levo not compensate for the lack of hormone produced by the gland, rather than totally replacing it?That would require the pituitary gland not to decrease TSH production to the point of no longer stimulating the thyroid gland to make hormones. The question then is: is there a magical point when the pituitary gland stops producing TSH once you add levo? How low can your TSH get before it stops contributing to T4 to T3 conversion?
But do we have the answers...and how useful would they be outside a research lab.
Which takes us back to the theory that TSH is not a good guide for monitoring thyroid disease following medication.
It's initial purpose was to diagnose hypothyroidism before medication but then the waters became muddied as it became " the gold standard" thyroid test.
Surely the hormone levels - FT4 and FT3 - give us enough information to judge conversion.
I'm just grateful that this site, and a huge amount of reading, enabled me to discover, when I could barely function, that I have a form of thyroid hormone resistance that was slowly shutting down my body....and that a supraphysiological dose of T3-only has come to the rescue.
My initial point here was that T4 is not " a waste if time"!
But do we have the answers...and how useful would they be outside a research lab.
We probably don't, no. How useful would they be? Well, if they were taught to doctors in med school, they might stop patients being systematically under-medicated due to reliance on the TSH.
as i see it .. the 'added' bit of Levo is then taken into account by the pituitary/hypothalamus ... which lowers TSH accordingly... which lowers thyroidal T4/3 release accordingly ... so the overall result of 'adding a bit' can easily end up as 'the same' or even 'less'. Hence why 'full replacement' or something approaching it is often needed, even if the thyroid can still work a bit.
It's not that the small dose of levo shuts the thyroid down totally, it's that the checks and balances applied to the thyroid by the hypothalmus /pituitary can mean that the total hormone amount is still less than is needed.
and then of course ,you also have to take the effects of TSH level on deiodinase conversion into account , and TSH effect on thyroidal T3 /T4 ratio... at which point my brain starts to hurt
I understand that levo is a replacement hormone but do even the smallest doses of levo that some patients need completely replace what a fully functioning gland would provide?
Would that small replacement dose not leave the patient undermedicated if the gland produced no hormone at all?
No and yes.
We see people on here that have been started on 25 mcg levo, which is enough to bring the TSH down to a level where the thyroid is no-longer being stimulated enough to produce any hormone, yet 25 mcg is not enough to replace what the thyroid was making, so the patient is under-medicated.
If that is the case then with the addition of replacement (or compensatory) levo/T4 the thyroid is then " up to the job". I haven't used the best terminology I admit .
I think we have to be very, very careful with terminology - the last thread on rT3 demonstrated that very well, I think. Of course, doctors often use the wrong terminology, which doesn't help, and we are left asking ourself if they really know what they're talking about or is it just an attempt at 'dumbing-down' for their ignorant patient! No wonder we often feel we know a lot more than them!
One problem with the STTM is that it claims that NDT is superior to synthetic T3 and T4 combos as NDT is bio-identical and also contains T1, T2, and calcitonin. This is a popular belief in some thyroid blogs and forums as those hormones are said to also play a role. Some of them claim, for instance, that T2 plays a role in fat-burning. This is also an opinion favoured by some doctors prescribing NDT. However, it would seem T2 is a by-product of rT3. There is no way of knowing how much T1 and T2 the thyroid gland produces, and they cannot be measured in blood. Also, it is also not possible to know how much, if any, survives the manufacturing process. And I have not found any proof that T2 does anything. Plus, it´s wrong to describe thyroid hormone as a weight loss drug. Some will also use the argument that NDT is the best form of thyroid hormone replacement as it was the first one used...it´s been around since the late 1800s. But that was before synthetic alternatives existed. Just because NDT was the first treatment available doesn´t mean it´s right for everyone, or that it works better than everything else.
Unfortunately, some thyroid communities are very narrow-minded and advocate one form of thyroid hormone replacement. There are communities that are very much anti-T3 and claim nobody should take anything containing T3 as the body will convert T4 as needed. They say T3 is over-stimulating and dangerous. They also say that the T3:T4 ratio in NDT is not natural for humans as pigs´thyroid glands produce more T3 than the human thyroid gland. Other communities, like the STTM, claim NDT is the best option for everyone. But there is no one size fits all when it comes to thyroid hormone replacement. Also, our hormone needs are not static. They can change over time. Some may do fine on levo to begin with, but then have to add T3 later. Some can stay on levo all their lives and never need to add T3. Some never feel fine on any kind of synthetic hormone but do fine on NDT. Others feel awful on NDT and much better on a synthetic combo. Some will need T3 only. Some do not feel fine on levo to begin with, but manage to improve T4 to T3 conversion by correcting nutrional deficiencies and end up doing fine on levo. Some need mostly T4 and a tiny amount of T3. Some need a little T4 and mostly T3. Some will need to add levo to NDT or T3 to NDT. Some will feel fine on levo when on a high enough dose - many doctors tend to keep patients undermedicated and therefore hypo. The possibilities are endless.
On the subject of how much T2 and T1 there is in NDT, it's never been established exactly how much T2 and T1 the thyroid produces. It would seem that the bulk of T2 and T1 comes from conversion of T3 and rT3, and the thyroid only produces a minmal amount, if any. So, the amount you would get in one grain of NDT would be negligeable and unlikely to be the key to its supposed superiority.
We also need to be careful that we recognise the numbered prefix - in this case 3,5. Which is different to 3',5 or 3,5' - just to confuse further!
If we are receiving sufficient T3 (whether directly or converted from T4) then the amount of T2 could be too high if that T3 converts to T2 and also rT3 converts to T2.
Digressing a little but this is an interesting link detailing the pathways of hormone metabolism/clearance and the metabolites of T4 such RT3, Tetrac, T4 Sulfate, etc, and T3 such as active T2, inactive T2, Triac, T3 sulphate, etc.
There are approx 2 million people in U.K. on thyroid hormone replacement
Many of them manage well on just levothyroxine, so won’t be on a thyroid forum looking for support or other options
Many members on here, if now on levothyroxine plus T3 o4 T3 only or NDT, often managed well or OK on levothyroxine initially for several years/decades
Seems that conversion issues can get worse the longer we are on levothyroxine, due to age, menopause, low vitamins, food intolerances etc
Frequently dose levothyroxine has been reduced inappropriately by GP, leading to complex mix of issues
Often improving poor vitamin levels to OPTIMAL levels and/or addressing food intolerances and/or always getting same brand levothyroxine or trying liquid levothyroxine, or fine tuning levothyroxine dose are enough to significantly improve symptoms
All these steps should be tried first anyway, before considering adding T3 or trying NDT
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.
If your thyroid isn't working well, or you have a thyroid auto immune disease, or you have a medical intervention and loose your thyroid to either surgery or RAI thyroid ablation, you will need some form of support in the form of thyroid hormone replacement.
Around 80% of the people diagnosed hypothyroid are prescribed T4 - monotherapy and it works well for them and they are not here looking for answers as to " why " :
Most people can get by on T4 only :
Some find T4 seems to stop working for them as well as it once did:
Some find they need to add a little T3 into their T4 medication making a T3/T4 combo :
Some find they can't tolerate T4 and need to take T3 only :
Some find NDT suits them better :
It's about having choices and the knowledge to understand one's own body and needs.
No thyroid hormone replacement works well until core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and is said to be about 4 times more powerful than T4 :
Conversion of T4 into T3 can be compromised by low levels of vitamins and minerals as mentioned above, and any physiological stress ( emotional or physical ) plus inflammation, depression, dieting and ageing.
So everything is a work in progress, and as life stresses come and go, and we age nothing is set in stone and one needs a flexible approach .
I am post RAI for Graves Disease in 2005 - i was doing ok on T4 monotherapy for around 8 years : I then became very unwell with what I believe were the consequences of long term RAI and or management of my hypothyroidism.
I did have high over range reverse T3 as I wasn't the converting the T4 but had to find this out for myself as the NHS do not test this, and wouldn't acknowledge it's possible reasons.
I then decided to self medicate as I was unable to be prescribed either T3 or NDT within the NHS system.
I trialled both a T3/T4 combo and NDT and I prefer NDT as it feels softer on my body.
I still need to supplement vitamins, minerals and another glandular for my adrenals.
I have a yearly blood test now, more to see where my vitamins and minerals sit, I feel a lot better and on NDT my T3 and T4 have swopped % through ranges as now my T3 comes in at around 90% and my T4 at around 30% :
So, I'm sure should I check my reverse T3 it will now be low in range as I'm metabolising and utilising the full spectrum thyroid hormone replacement and on a much lower dose of T4 than when left unwell on T4 monotherapy.
I don't see as much comments on this site about people struggling with T4
I would have thought that the majority of comments on here were exactly about that. Myself, I've always struggle with T4 - even with the T4 in NDT - and need to be on T3 only to be well.
So true grey goose. But the medical fraternity add a large dose of problems into the mix, by not treating until very unwell, then under dosing because obsessed with the TSH level, known to lead to under treatment, lack of awareness for the other factors needed to maximise uptake use of thyroid meds and finally an inabilty to provide diversity in treatment when needed without a very large battle in your hands........hence why this site is so busy.....lol. Personally am very grateful to this site. Generally it presents a balanced approach to thyroid treatment......I like th fact that differing views are discussed on here which moves us to all look at it and come to our own conclusions anout what works for each of us. Refreshing and enlightening.
I couldn't tolerate T4 at all. I had awful palpitations with it that even the cardiologist couldn't figure it out after many overnight heart monitors..
Still... one solution doesn't work for everyone. I, for example, seem to tolerate T4 (levothyroxine) pretty well, but the tiniest bit of exogenous T3 (whether as liothyronine or from NDT) makes me feel terrible with all sorts of arrhythmias. I pretty much have to work with T4 and optimize natural T4 to T3 conversion as best I can.
I would suggest that many of the problems associated with thyroid treatment are down to the fact that medics are very poorly educated in matters thyroid. As a consequence many patients are misdiagnosed and wrongly treated and left struggling to cope.
Until the medical profession get to grips with the science and translate that knowledge into appropriate individualised treatment then nothing will change. We are all different, with different needs yet diagnosis and treatment frequently relies on a few misinterpreted numbers on a computer screen.
So, we have a choice, the computer screen in front of a medic or the one in front of ourselves!
Unfortunately as people, desperate to feel well, search on the internet for help they come across multiple views and suggestions which are often accepted as facts, when in truth they are possibly outdated....or unfounded.
This post underlines this situation!
Lack of robust thyroid education, from the upper echelons of the establishment down to the GP who is expected to adhere to unhelpful guidelines, is at the root of this problem.
Until that changes, patients will continue to seek answers in places that only appear to provide the answers they hope for....and the nightmare will continue to be the lot of many.
Those of us who are fortunate enough to have arrived here are the lucky ones, we have the knowledge of thyroid experts, like diogenes, and the experience of members who have been on difficult thyroid journeys and have gained much accurate knowledge along the way. ....I doubt that is universal across the Internet!
I totally agree Dippy Dame & the trouble is for those who are seeking to learn especially from scratch they may not realise what is current, what is outdated, what is sound advice & what is ill informed. I always think a good book like Dr Peatfields book is a great starting point. And of course Thyroid UK website which has books to read listed. Sadly its not your GP or even an Endocrinologist( unless you are exceptionally lucky) who will inform you and that is a shocking enditement on the medical world! Hey ho.... Unfortunately for them but fortunately for us there is the Internet where there is information but you do need to check sources and cross check validity of info on them. However all of the info out there does show up the medical bodies failure to treat and treat optimally..... I always think its akin to the story The Emperors Clothes - no one wants to admit what they have set as the bar to treat and how they treat doesnt work for many and for some what they treat with doesnt either. Instead they will believe symptoms are another condition/s or a mental illness or made up. Doctors need to get back to doctoring not just going on blood test results and what labs say or what the flow chart says on their computer screen. I call it mindless medicine.
What a better world it would be if Dr's would treat patients the way patients need to be treated. I for one can say from my personal experiences how Medical care failed me from get go with my thyroid journey.
Shaws this would normally be humorous but it's very tragic that a Dr would say T3 converts to T4? Shouldn't this be elementary in Medical Academia? These are the kind of Dr's that patients unknowingly turn to these Dr for help. These same Dr's are the ones that mislead patients who know very little about thyroids and are seeking help from these Dr's to get well.Knowledge is Power. We need to educate our self's as much as possible so that when we end up by such a Dr we should know to run not walk.
The very original thyroid hormone replacement was discovered around 1890's and it was found that hypo patients no longer died a horrible death.
It was/is called Natural Dessicated Thyroid Hormone and removed by those we'd expect to be more knowledgeable. That decision left many in limbo as they were well on NDTs which contain(ed) all of the hormones a healthy gland would do.
Many people seem to do fine on levothyroxine but a section of society cannot and do not and it is not humane to prevent a trial of 'options'.
I am one person for whom levothyroxine is useless. When I was first prescribed, it gave me horrendous palpitations and I had many overnight recordings. Cardiologist was puzzled and was contemplating putting an implant in myheart to 'see what was going on'. Coincidentally, some T3 was added to a reduced T4 and it was a blessing as it relieved my awful symptoms.
With the severe palpitations I had to wrap around my neck a frozen scarf I kept in freezeer whilst I sipped ice-water to try to reduce the palps.
Some people can get well on Levo, but I am afraid that I am a T3 person!
I was diagnosed Hypothyroid in 1999. I was put onto Levo, which never worked for me and told I had no choice, take Levo because it is all we will allow you.
In 2019, I decided that I had had enough and I was going to learn what was available for hypo patients!
I joined thyroidUK, came on this forum and got all the information I needed, took a year to learn what I needed to learn. I found tons of people who were in a similar boat to me, so I don't know why you haven't noticed how many people can't get along on Levo on this Forum. Are you new to us?.
The long and short of it is that I bought T3 in 2020. My GP refused to help me through a trial because he said T3 was an illegal drug!! So I did it myself.
Here I am now, on T3 only and feeling more myself than I have ever done in the last 2 decades. That is because Levo did not work for me. I am 69 now, over 2 decades of my life has been lost to me.
My hair started growing again and I am losing weight! I have no itchy ears, I am not suicidal it is like a totally new me. I recognise myself at last.. It is the best thing I ever did joining ThyroidUK finding this forum and getting on to T3.
I have been trying to lose weight for years and trying to get Keto diets to work for me for years, since I was in Hong Kong in 1978/79.
When it finally did work for me, only since Chrimbo, I thought something was wrong!! I was convinced I was Type 2!
Took me a few days to understand tht my Blood Glucose was not rock bottom because I was burning my own fat! First time that my body behaved as the books said it should. What a weird feeling, but very empowering!! Hello world, I am normal at last.
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