I am currently trying to look at all alternatives available to me:
I am seeing a so called Hertoghe doctor in Belgium and can get a prescription for either Armour or Erfa (the only two NDT drugs available in some Belgian pharmacies). Neither drug is optimal for me. Also, given the price of NDT in Belgium, I would only be willing to pay for something extraordinary, not something that works only marginally better than T4 drugs alone.
It's a shame what happened to Erfa; the reported problems seem to have started around the time I was switched from Armour to Erfa...
I have been on Thyroid-S from Thailand for about six months, and feel OK but not great. Even on high doses, my FT4 is at the bottom of range and my FT3 levels midrange at best. That is exactly what my FTs looked like on (high doses of) Armour. My doctor said that does not matter as long as my TSH is suppressed because, to quote doc: "Your suppressed TSH shows that the medication is working".
This seller of Thyroid-S does not charge as much as pharmacies in Belgium do for prescription NDT, but is more expensive than Thai suppliers. On the other hand, knowing that delivery can be guaranteed makes it worth it.
The reason I chose Thyroid-S over other Thai brands is because it's available from a seller in the EU, so it will be shipped as an intra-community delivery.
I really don't like the very long list of fillers for Thyroid-S (are a dozen or so fillers really necessary?), but the fact remains: when I search the net for reviews, most if not all are positive. Very few users seem unhappy with the product. But to me, it feels exactly like Armour did back in 2011 when I was first put on it: first, a rush of warmth and energy which disappears after a couple of days, then comes back after every raise, only to disappear again, so I never seem to stabilise on either brand. Could cellulose be the reason for that?
I recently contacted one pharmacy in Belgium carrying NDT, and was told they cannot order any other brand (Naturethroid, WP, NP...) if the script is for Armour or Erfa...the reason I was given is that those drugs are NOT interchangeable...so using the doctor's prescription to order NDT in Belgium is not an option for me, unless I choose to go back on Armour or Erfa.
I have located a seller of the other Thai brands based in Thailand who has found a way to deliver the goods without problems but, before I go down that road, and decide to try yet another brand of porcine NDT, I have been asking myself if I should give Thyrogold a try...? The main reason I've been hesitant is that it contains bovine and not porcine thyroid, and the latter is said to be closer to human body chemistry. However, since most adrenal support products (both ACE and glandulars) come from cows, I wonder if that is really reason enough not to try it...plus I like the fact that Thyrogold contains few fillers, and no cellulose.
Is there any evidence that bovine hormones act differently than porcine hormones once in the human body? Is there any reason why Dr. Lowe, very knowledgeable about thyroid disease, would choose bovine thyroid hormone over porcine (availability? cost? etc)
Inspired by many posts (here and elsewhere), I briefly tried T3 only a couple of years ago, but felt terrible within a week. It's obvious to me that I need both T3 and T4, and I am still hoping I will be able to make some brand of NDT (be it porcine or bovine, prescription only or OTC) work.
Have you tried Thiroyd or TR Man from Thailand? I think Thiroyd has fewer fillers than Thyroid-S but is an unglazed/uncoated tablet that has a shorter shelf-life than Thyroid-S. Thiroyd is the cheapest NDT available anywhere (I think). I don't know anything about TR Man tablets.
I have been considering them lately, as they definitely have fewer fillers than Thyroid-S and the shelf-life really isn't that important to me as I expect to finish a bottle pretty quickly anyway...TRMan seems to be so new that nobody knows much about it, but it would be interesting to hear from people having tried it.
I've read one review from a patient I trust on another forum. She liked them and said they affected her in the same way as Thiroyd, which was her preferred treatment.
Thanks, Humanbean, that is very interesting info indeed
All this has made me wonder...if I need high doses of a drug like Thyroid-S to feel OK (and by high, I mean 7-8 grains daily, minimum), does that mean that I would do just as OK on a legit drug like Armour Thyroid...? Now, I am beginning to wonder if I never raised it high enough...I have always had this idea that you "should" never take more than 3-5 grains daily of any NDT drug, but maybe that is not the case...or, should you always chew up NDT drugs containing cellulose?! I remember the STTM writing quite a lot about this around the time Armour was originally reformulated (7 or 8 years ago) but, since, not much has been said about this method...
Also, I have been wondering lately. I take NDT once a day, in the morning,. I know, that is not what is generally recommended, but I do it for the sake of convenience...also, since T3 is said to have a half-life of 24-48 hours (depending on source) and T4 of at least a week, I figure it won't make that much difference in the end...anyway, I have noticed feeling slightly sluggish during the day, tending to have cold hands and feet, but always feeling more energetic and warmer (especially, having warmer hands and feet) at night. I wonder if NDT drugs containing cellulose, such as Armour or Thyroid-S, had better be taken at night, in order to have time to be broken down and released into the bloodstream...in time for next morning?
I know some people split dose NDT so that they get smaller doses of T3 a couple of times a day. But some people do just as well on one dose a day.
There are some people who chew their NDT thoroughly before they swallow it, and some who swallow it whole.
Which NDT people get on with varies from person to person. They each have different fillers, or fillers in different proportions.
The only thing I can say is that experimentation is key and there are no short cuts to the right answer. You need to know whether chewing works or doesn't work, whether split dosing or all in one dosing works or doesn't work, and you'll have to try and source NDT of different kinds from where you live. And I know governments and doctors are making that harder and harder all the time.
Compared to most people your dose of NDT is quite high and the way you described your thyroid function test results makes me think they were not great. This makes me wonder if you have thyroid hormone resistance, and the way to treat that is with T3 only.
You said you tried T3 only and felt awful. But can you tell us how you conducted your T3 only experiment? What dose did you start with, and did you take one dose or did you split dose? If one dose didn't work then you could have tried split dosing, and vice versa.
A lot of the advice about how to start taking thyroid meds is based on the assumption that people have never taken it before, or have never taken T3. But if you have been taking 7 - 8 grains of NDT per day your body is familiar with T3. You don't need to start on 1/4 or 1/2 a tablet. You should probably start on a much higher dose. If you started on too low a dose it could be why you felt so awful when you tried T3 only.
A point to ponder :
1 grain of Thyroid-S contains 38mcg T4 and 9mcg T3
8 grains of Thyroid-S contains 304mcg T4 and 72mcg T3.
If T3 is 3 times as potent as T4 (opinions differ), then you might need approx 170mcg T3 to be the equivalent of the NDT you were taking.
I think that explains the problem you had with T3 then. You started on a dose which was far, far, far too low for you. If you are currently taking the equivalent of 72mcg T3 then the absolute minimum you should start on would be 80mcg - 100mcg (in my untrained opinion, and I'd like greygoose who is also on T3 only to give an opinion too, because I'm not confident about mine). And you might need to go up in dose quite rapidly from that starting point.
I would suggest dosing once a day rather than multiple times a day, because you probably do have thyroid hormone resistance and once a day dosing is usually best under those circumstances.
Even if you take as much 100 mcg of T3 or even more daily? I know I am currently taking 72 mcg of T3 daily once a day (in the morning), but I have read that the the body reacts differently to the T3 in NDT compared to synthetic T3...not sure if that is true, though.
Any input from members on any dose of T3 would be appreciated!
Yes, I'm not confident in my opinion either, which is why I'm hoping greygoose will answer.
Another suggestion is to start with 25mcg (1 tablet) of T3 first thing in the morning and work out what time you start feeling awful. Then add 25mcg two days later, then do the same again. Then two days later... etc up to a level of 80mcg - 100mcg T3, then slow down your raises to every week.
The late Dr Lowe, who gets mentioned on here quite frequently, used to take 150mcg T3 a day all in one go. For people with thyroid hormone resistance it wouldn't be that unusual.
I am seeing a so called Hertoghe doctor in Belgium and, the more I think about it, the more I realise these doctors (although much more unconventional and open-minded than most mainstream docs) also have a "one size its all" approach.
Meaning: you are supposed to recover completely on NDT, especially after the addition of HC or Medrol for adrenal fatigue. If you don't feel good on NDT, you are told to raise the dose. If you still don't feel better, they don't know what to do. To them, synthetic T4 is bad, synthetic T4 combined with synthetic T3 a little better, but NDT is the best of them all and is supposed to work for everyone once you find your optimal dose.
Don't get me wrong. I feel OK, but not great. I know we are all different and have different needs, but a healthy thyroid gland is said to produce +/- 100 mcg of T4 and 20 mcg of T3 daily. It's strange that I'd need to take three times that much for symptom relief.
A few months ago, I managed to wean off Medrol which I had been on since 2011 (for adrenal fatigue), and I have to say I feel better without it. I have lost weight effortlessly since going off it, I no longer retain fluid, my face is less puffy, and my appetite has normalised. I was on 6 mg of Medrol daily for three years, then reduced it to 4 mg daily and remained on that dose for a couple of years before weaning off it. I know it's considered a physiological dose (the equivalent of 20-30 mg of HC daily), but I have to say that I feel better without it, and I will do anything to avoid going back on it. I currently take an OTC product containing adrenal cortex among other things, and that seems to be enough for my needs.
I think adrenal fatigue is not supposed to be a condition requiring life-long treatment, but rather a temporary condition...? I don't know if I was stupid to wean off Medrol, but I cannot say I have noticed any adverse effects (if having to raise NDT is not one of them, that is...???) So, what I am beginning to wonder now is: could weaning off steroids have anything to do with rT3 dominance?
No. It's possible to test that in Belgium, but I would have to tick that box next time I go to the lab...which will be some time next summer (next appt with doc 08/17).
Thinking about it - which I often do - I'm not sure the rationale for taking T3/NDT in split doses is all that rational at all
There's this idea that we have to mimic the action of the thyroid gland itself, because that's what works for healthy people. But, we're not healthy people, so it wouldn't be surprising if we needed a different way of doing things.
Remember that we have usually been surviving on the low doses of T3 made by our thyroids and conversion of not enough T4 - or even bad conversion of T4 - for a long time before we are finally diagnosed. Therefore, a lot of T3 receptors have been shut down - hence the symptoms. So, we are, so to speak, starting on empty - unlike euthyroid people whose cells have never been completely emptied, and therefor jog along nicely with small dose of T3 at regular intervals to top them up.
As I see it, with our empty cells, and switched off receptors, we need a lot of T3 in one go to flood all those receptors and turn them on again. And if the T3 comes in dribs and drabs, there will never be enough to flood all the receptors in one go. Whilst, on the other hand, there's always the possibility that some cells get too much - which is why people can have hyper and hypo symptoms at the same time.
The pro-split dose lobby says that T3 has a half life of - what? - 24 hours? And, therefore we should be constantly topping it up. But, that is the length of life in the blood. But, the T3 that has been taken up into the cells lasts a lot longer than that.
Could it not be that those that split their dose run out of steam after a short while because of these small doses they're taking? Because with a split dose there's not enough to go round all the receptors, and even those it does reach, don't all get enough, and therefore need topping up more often? Whereas if you give them all that they need in one single large dose, it would probably keep them going for longer - until the next day, in fact, when you take your next dose.
I cannot see the wisdom of comparing euthyroid people with hypothyroid people and trying to ape their systems. There must, surely, be a lot of differences in our systems - some we probably don't even know about - far more than just the fact that our thyroid glands are failing, or gone. It would seem that it's not just a question of replacing what we can no-longer make, it goes far deeper than we imagine - certainly deeper than most doctors imagine!
I've probably explained that very badly - and, after all, that is just my theory. So, if anybody has a different theory, please feel free to contradict me.
Thanks, as always, Grey Goose! I just love reading your posts; I sometimes even do a search here just to find some of your older ones...I simply find them amazing! So well written, so interesting, carefully worded, everything you say just makes sense! You also seem to have an awful lot of experience with various conditions related to hypothyroidism, which makes your contributions even more valuable IMHO.
I have paid a fortune to see so called specialists, simply because they prescribe NDT. We are literally talking about hundreds of € in lab analyses, doctors' fees, and drugs not reimbursed by health insurance. NDT is not reimbursed where I live, being considered "organ therapy"...neither is HGH, btw, which I have managed to avoid so far...
I would not mind paying that much if everything just normalised. Am I expecting too much of my doctor; after all, I am not euthyroid, I was most likely hypo for years (diagnosed with Hashimoto's in late 2000), and it's only to be expected that would wreak havoc on my body, maybe even causing irreparable damage...? Possibly. But my doctor is a so called "hormone expert". I know that is not a generally recognised specialty, at least not in Belgium. Maybe I expected too much simply because of my doctor's fees...
I don't know. But one thing I do know: if it weren't for forums like this one, where patients can get together and discuss thyroid-related issues, I would not be where I am today...I cannot tell you how much it means to me to know there will always be knowledgeable fellow patients and thyroid sufferers here who know more than most doctors...!
Believe it or not, and endocrinologist is supposed to be a 'hormone specialist' - as specialist of the endocrine system, and all the hormones contained therein. Just as a cardiologist is a heart specialist. The difference is that they tend to specialise within the speciality, and become diabetes specialists - because it's sexy! - and have very little knowledge of all the other hormones. I find that incredible! But, what it means is that we thyroid patients are left out in the cold, and the diabetes patients - presumably, I don't know, I'm not one - get a lot of attention by knowledgeable doctors. Or, are they just as ignorant about diabetes as they are about all the rest...?
I am certainly no expert myself but, in my experience, most hormone doctors seem to look at your TSH and, once it's within range (or even slightly suppressed), they will decide your are optimally treated.
That is why I intend to keep my current doc to get some prescriptions, while continuing to self-treat in other areas...I honestly think that is the only solution.
You have to start from 5 mcg T3 and gradually encrease every 7-10 days slowly to optimal amount . For you 20 mcg it’s very small amount , to consider ,that you were on so much of NDT. Try to reduce NDT slowly and the same time add T 3. After 3 month check
Anna! You don’t know if you converting T4 from NDT, if you are passed your middle age, the conversion to T 3 not so efficient . You need T3 to add during second part of the day to feel more energy.
There is one thing I have been wondering lately: while being hypothyroid, I put on a lot of weight (ca 20 kilograms). It was impossible for me to lose it on T4 drugs on (even on high doses, such as 200 mcg daily), and also on Armour and Erfa alternatively. I was told that as soon as I was put on thyroid hormone replacement, I'd start losing weight (incl water weight). That did not happen.
Since being on Thyroid-S so, for the past year, I have lost all that weight pretty effortlessly (meaning no dieting), and I am now back to my pre-Hashimoto's weight.
In that same time, I have also stopped taking Medrol (4-6 mg daily) for adrenal fatigue.
I currently take Thyroid-S (8 grains daily), and Estrogel from day 5-25 of cycle, plus natural progesterone (Utrogestan) 200 mg capsules from day 15-25 of cycle. Both prescribed by Belgian Hertoghe doctor. No other hormones.
The fact that I have managed to lose weight for the first time in years, without much effort on top of it, does that show that Thyroid-S is working, even though my levels don't look that great...? On 7 grains (I've since raised it), FT4 levels were 0.9 (ref 0.8-1.5) and FT3 levels 2.9 (ref 1.7-3.7) 24 hours after latest dose. TSH completely suppressed (<0.01).
My levels on Thyroid-S look pretty much like they did on Armour a few years ago, the difference being that, while on Armour, I remained pretty much hypo, and could not lose weight. To me, the (in)ability to lose weight has always been the best indicator of my thyroid status, regardless of lab results.
Sometimes, I have the impression that the more I try to understand, the less I actually know...
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