I'm curious to hear from anyone who feels better on NDT than either of the synthetic hormones. I'm aware that my T3 dose could possibly stand to be a bit higher than what my CCG allows ( I'm on 150 Levo and 10 T3), but even though I feel better with the added T3 in some ways, I still have some symptoms that just won't budge. I'm trying to explore other possible causes for them, but doing so on the NHS is virtually impossible without being thrown away or ignored, and doing so privately is becoming increasingly disheartening due to high cost and no answers in return
I hope everyone is keeping well x
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lau99
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It's interesting that you and some of the other replies I've gotten say that, because the main reason why I'm curious about NDT is because I suspect/am concerned that there might be something in or about the Levo that I can't tolerate, so I'm exploring the option of completely replacing it.
I can't imagine I'll ever be fortunate enough to have an NHS doctor prescribe me T3 alone, and being that they are both synthetic, it could be that whatever might be disagreeing with me in the Levo may also be in the T3, hence why I am looking for more info on NDT. Maybe before I explore the NDT route I can try finding someone (NHS or private) who might let me try T3 monotherapy?
Some of my symptoms improved slightly on T4 only but I never felt well.
Started on NDT and it was like someone flipped a switch. I'm still titrating my dose but it's been quite literally, life-changing for me.
I've never been on synthetic T3 so I can't compare but when I started taking NDT there was something really subtle that changed immediately. Like my body relaxed somehow. It was strange, but welcome!
For me it wasn't immediate but more subtle improvement that came with time. I disagree with the the comment that there's no difference between the T3, T4 synthetic combo. Simply because NDT being derived from pigs gland means it contains the whole array of hormones our natural gland has including T1,2 & calcitonin. I lost my thyroid due to cancer so for me it's the best choice to replicate what I had!
You make a lot of good points. I also lost my thyroid just shy of 3 years ago, and am wondering if all the lingering symptoms are possibly side effects of the Levo. I thought I'd ask specifically about NDT as it's the most similar to the thyroid that I no longer have, but really, if T3 can do the job then I'd probably prefer that just because it's easier to source..
Yes, I get that. - it is a constant worry about sourcing the NDT , though easier now I have a private prescription, just expensive! I guess maybe try more T3 first and if you still don't get there, you might have to revisit the idea of NDT in the future...?Remember to make sure your VitD , folate ferritin etc optimal too, - that makes a real difference in how effectively the replacement can work for you. Good luck, keep us posted! 😊
I've been on NDTs since surgery, aprox 11 years. I was allergic to both the generic and name brand of synthetics. It took the better part of 2 years to work out a good dosage, then The NDT manufacturers started recalling due to quality and proper strength. Now back on NP thyroid, new blood work, raised dosage. Living in Portugal has been the biggest issue as they don't perscribe NDTs. I get them shipped from the states working with my doctor there.
Sometimes you have to fight your doctors to understand your issues. I went through several until I got one that would listen.
Thank you, Aardvark00 I definitely know the feeling of having to fight to get doctors to listen to you. Thus far in my journey, there's been a lot of fighting, but I haven't quite gotten to the listening bit! I'm starting to seriously consider the possibility that I'm allergic or intolerant to the Levo somehow, but doctors insist on keeping me on it. NDT as a solution seems to be tolerated well, but the pursuit of obtaining it and staying stable on it seems very stressful...
One practical problem with NDT is that it is difficult to get a doctor to prescribe it in many countries. Prescription NDT is also very expensive.There used to be several brands of Thai NDT available OTC. Two have been discontinued, leaving only one. Raw material shortages and demand have driven the price up considerably in the past year.
Glandulars (porcine or bovine) are also a possibility. They are sold as supplements so don´t require a prescription. The most famous one is probably Thyrogold. One problem is that, during the pandemic, many brands have been out of stock for months, and when they are finally back in stock stocks are limited so you can only order a limited amount at a time. Many have to be shipped from the US which can take weeks and also be expensive if you have to pay VAT and import taxes in addition to shipping costs. There is one UK product, Metavive, but it was reformulated in 2020 and not everyone is doing well on it since.
Several US prescription brands have been reformulated and said to work less well since, and there have also been recalls in recent years leading to depleted stocks.
If I were you, I´d be tempted to try to increase synthetic T3 first. As you say, 10 mcg is not a high dose. If that works for you, why bother with NDT given how difficult and expensive it can be to get? True, if NDT works best for someone, that is all that matters, but you could try increasing T3 first and see how you feel. Some say that synthetic T3 is too strong for them, but if you feel fine so far it could be a good idea to try adding 5 mcg and see if symptoms improve.
I switched to Thyroid-S (Thai NDT) from levo last year and am tempted to try a synthetic combo instead given the supply problems and cost. When I say "supply problems", I am referring to the fact that I have to order from an EU supplier (to avoid problems with customs), and they depend on shipments from Thailand which are sometimes delayed so it can take up to eight weeks for my order to arrive. So, I always need to plan ahead and order enough so that I never run out. The cost is prohibitive compared to levo and also synthetic T3 (where I live). Also, although better than levo only, I have not been that impressed with Thyroid-S so far.
Thank you, PurpleCat You've very beautifully gone through all of the reasons why I've been reluctant to try NDT, despite all of the wonderful things I've heard about it...the supply issues, potency issues...they all concern me a lot - especially as it seems as though everything can turn on a dime and make life much more difficult for thyroid disease sufferers It worries me that, being 22 now, I may find that in a few years, the only medication that works for me could be snatched away at any time without warning. Since we have so few options, I'm not sure what I'd even do in a situation like that. I think you're right in suggesting that the T3 route may potentially be more viable.
A fully functioning working thyroid contains trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
NDT contains all the same known hormones as that of the human gland and made from pig thyroid dried and ground down into tablets referred to as grains.
NDT was the original treatment and used successfully for over 100 years to treat hypothyroidism and prior to Big Pharma launching it's T3 and T4 hormone replacement meds on the back of NDT.
As I understand things NDT hormones are bound to the thyroglubin and not available for reaction or breakdown until after digestion.
So you could say NDT is a slow released thyroid hormone replacement and not immediate as when compared to T3 and T4 preparations.
Which in layman's terms works for me as it is " softer on my body " which is the only way I know to explain how NDT feels for me and I am not turbo charged as I felt on a T3/T4 combo, though have to add I never found my right dose and switched to trial NDT relatively quickly due to not being able to secure future T3 medication myself.
True NDT is a predetermined balance of T3/T4 at around a 1 / 4 ratio T3 to T4 :
We suggest when introducing Liothyronine to Levothyroxine that you work on a 1 / 4 ratio and suggest that T3 is around 4 times more powerful then T4 when adjusting T3/T4 ratios :
So it's a start, and do read of some people when very close to finding their best dose of any T3/T4 medication adding in a little more T3 or T4 to the mix and adjusting the 1/4 ratio accordingly.
Whilst some find they can tolerate the T4 at all and need to move on to take T3 only medication.
I seriously doubt your current mix of 10 mcg T3 and 150 mcg T4 is working well for you as you are still too T4 heavy - and you still have symptoms - so do you have any results and ranges from this 1 / 15 - T3/T4 ratio ?
Though do we know if any T2, T1 and calcitonin present in the original glands survives processing, and delivery, gets absorbed into the bloodstream, taken up by cells and makes any difference?
Nowadays, we expect to see precise T4 and T3 levels from modern assays. In the past protein-bound iodine was used to assay potency of desiccated thyroid. The difference between modern and old assays could well be accounted for by considering MIT and DIT which will be present in the glands, without needing to look at T2 and T1.
Bear in mind that calcitonin as a medicine was sometimes delivered nasally, simply because it gets destroyed in the stomach.
A little confused by this - so if you do not have a thyroid gland and there has been a medical intervention does that change the thinking of this MIT and DIT - and who are they ?
MIT and DIT are the first stages in thyroid glands making thyroid hormone.
Our thyroids manufacture MIT and DIT - then couple two DITs to make T4, or a DIT and a MIT to make T3. All within the thyroid gland.
If we have no thyroid gland, we'd have to investigate whether MIT and DIT could have any impact whatsoever elsewhere in the body but I don't recall any papers which claim they do have a function elsewhere.
The main text is a bit heavy, but the diagram is quite good:
On the diagram where is says Iodination, if you look very carefully, shows MIT and DIT - the MIT having one purple blob (iodine atom), the DIT has two.
Also, is calcitonin not produced by the parathyroid glands which are not automatically affected by hypothyroidism? My grandmother had a parathyroid problem and needed to be on calcium supplements, but I have never needed that - hence my question.
Thank you as always for the detailed response, Penny Unfortunately I still haven't got any blood results to share from being on this dosage - my GP surgery has become increasingly impossible to contact as the pandemic goes on (but also, they seem to be growing more and more tired of me since having the thyroidectomy as they believe I'm 'cured' and just looking to waste NHS time). I may order a medichecks just for my own records, but the endocrinologist is chasing me for bloods as well at this point (if I don't deliver, he'll take away the T3) and won't look at private results.
I don’t know how to attach files unhelpfully, but Google Walter reed hospital and double blind ndt /levothyroxine study. It’s the only study I’ve found that directly compares the 2, about a third of patients felt better and lost weight compared to taking levothyroxine although the bloods showed little difference. It was only a small study unfortunately, but indicates that ndt can be beneficial in a more subtle way.
For me it was not so much NDT making me feel better than the T3, it was the fact that NDT also had T2 and T1 and calcitonin. Unfortunately NDT stopped worked for me in 2018 and I am back on T3/T4 combination. However provided I had enough T3 my symptoms went when the NDT was working the same as they are not there with T3/T4 combination - provided I get enough T3. I need at least 40mcg of T3 a day (whether it was NDT - 5 grains or T3/T4. The T4 at 100 mcg a day. Maybe I do not need the T4 but have not tried it with just T3 alone. In my opinion you are just not getting enough T3.
I think the equivalent put on NDT is a rough number, not an exact. When the NDT was working on me there was no difference in how I felt between the 5 grains and the 40/100 of T3/T4. Any less of either and the symptoms came back. And I get some really horrendous symptoms.
Thank you both for this Ultimately I don't mind if it's NDT or T3 monotherapy that I try, or even if it's say a combination of T3 and an OTC thyroid glandular supplement - it's just that I've always suspected from the beginning that the Levo could be causing my problems, so I at least want to try getting rid of it to see how I feel...
Hmm interesting...I won't lie, I have considered doing just that, but I always thought that in order to see any possible difference, I'd have to stay off it for at least 2 weeks because of its long half-life. Staying off it for that long seemed too risky to me, or at least that it would really mess up my bloods and make doctors treat me even worse. My current endo is practically bursting for me to come off the T3, so I can't see me suggesting to come off/decrease the Levo and increase the T3 going down well...
I'm glad you managed to get some relief in the end For me, it's completely insane abdominal bloating. At this point, I've easily spent thousands on trying to get rid of it, and on private consultations, but nothing works. I'd never had this problem before starting the Levo, and like you, I've tried all of the brands. My current endo even had the nerve to condescendingly ask me "if it had ever crossed my mind" that it might not be thyroid related, after clearly not listening to me having just told him that I'd spent so much on imaging, tests, diets, antibiotics and private healthcare to try and fix it. I have a private endo who seems to actually care and listen to me, but he's just so expensive...I might just bite the bullet and pay for another appointment to discuss getting rid of the levo once and for all, or at least for a little while to see if anything changes.
Hi lau99,I know this is an old post, but I just wanted to say, I used to get painful abdominal bloat. Only started after RAI and being on levo. Turned out its the lactose. It went after I changed to Aristo lactose free. Thought I would mention it just incase it helps x
My private endo said the same thing when I first told him about this problem - unfortunately it didn't really lead anywhere, but that being said, I can't seem to find any record of progesterone and oestrogen results, even though I think I remember being told that they were normal. What did you have in mind that made you suggest getting them tested, if you don't mind me asking?
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T4-only; T3-T4 Combo, T3-only or NDT? How do you know?
On T3 should you have blood tests for t3
Why would you - or why did you change from a T4 & T3 combination to T3 only?
What kind of symptoms can you have when starting T3?
T3 MADE ME FEEL SO MUCH BETTER WHEN I STARTED 1.5 MONTHS AGO BUT LATELY NOT SURE IF IT'S THE T3 OR LEVO THAT'S CAUSING THAT SINKING FEELING
