Diagnosed hypothyroid 10 years ago... given T3... felt great. A few years ago I was told levo is better so that's what I'm getting from now on... felt really pants ever since. Found Thyroid UK, sorted out vitamins, minerals and adrenals but still not well. Tried different doses of levo... higher dose - severe joint pain, lower dose - all other symptoms got worse.
The present...
I am now taking NDT and have been for two weeks. I am taking 2 grains a day with no adverse effects at all. Within a couple of days the joint pain improved immensely, although it has revealed a problem with my left hip that had been masked until now by the pain in all my other joints.
I noticed a few other changes quite quickly too but nothing very big. I didn't really think there had been a huge difference until this evening after a karate class when Sensei said I look completely different in lessons to how I have looked the last few months (on the increased dose of levo to get rid of most of the symptoms, unsuccessfully!) I'm almost back to my old self
I have also noticed that my memory is improving slightly. Again, it's not a major improvement but definitely a start. A friend also said I seem to be so happy and perky lately My skin has improved, despite the winter weather and central heating. I am also sleeping better (apart from the odd night of insomnia which is mainly due to stress rather than my thyroid). I actually feel happy too. I wouldn't have said I was depressed recently or even unhappy, I just wasn't anything... but now I'm happy and it's a really weird feeling!
I think I have a little way to go but I think, as I increase my dose, that things will continue to improve. It hasn't been a magical cure - no taking the pills one day and feeling "normal" the next - but I am slowly seeing improvements and so are my friends. I am also able to cope with stress and noise and chaos much more easily, which is a good thing when you work in an infant school!
Hopefully things will continue to improve...
Sorry for going on, and for those of you who are still awake - thanks for listening
Carolyn x
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Yes, that would be interesting... if I can remember that long ago! I'll also have to take into account that I was much younger then
I think the improvement may well have been quicker with T3 only, but I like the fact that I can take a dose of NDT in the evening and it doesn't keep me awake; in fact it seems to help me sleep better and I wake up feeling perkier in the morning than if I don't take it in the evening. I am quite hopeful that I will feel just as well on NDT eventually, it will just take a little longer. We shall see...
Hi, I've been on 150mg Levothyroxine for years but I have no idea what NDT, T3, T4 etc is. Do you have to self medicate for NDT and how safe is it to do that? Originally, I had all the symptoms of an underactive thyroid but after a blood test, GP told me I was overactive and consequently I had iodine treatment. I have joint pains all over but GP puts it down to wear and tear. I haven't slept for more than 4 hours since taking Levothyroxine but GP just shrugged. My hair has thinned to half its original thickness and a lot of the time I feel I just can't be bothered to do much. I literally have to force myself. A doctor I knew said at the onset of my symptoms I should have had more than one blood test as my thyroid could be all over the place and especially as I had all the symptoms of under active!
Some people self-medicate with desiccated thyroid; some get NHS prescriptions; some get private prescriptions; and some buy their own but get help from their doctor(s).
You simply must get actual test test results from your GP surgery - including reference ranges - to help make sense of where you are.
Natural Dessicated Thryoid, usually from pig thyroid. The most well known is probably Armour which you may have heard from. A minority of people do not respond well to levothyroxine and this is an alternative, although many doctors won't prescribe it.
Hi, Carolyn, im glad im not the only one who didn,t know what NDT is. Is it costly, because if it is my surgery definately won,t subscribe. I,ve been on Levo for 11 years now (100mcg), and I have to admit I would be abit nervous of changing. I also take Bezafibrate for my cholesterol - do you know if NDT is suitable with this medication. Like pettals, I think it fab that so many of the people on this site are able to hold down employment. I worked full time until I was 43. Then part- time on and off from thereon, but had to give that up in 2008. When I feel great, which I do from time to time, I think to myself, right, I,m going to get another little part-time job, but then reality checks in and I know I couldn,t sustain one. There again I am 60 this month, so can,t complain, as I know there are people much younger on this site, much worse off. So glad the NDT seems to be working for you - long may it continue. Love, Kath
Hi Kath I take t3 only 70 mcg all at bedtime and I feel pretty good and I turned 60 just a month ago. I also work part time 30 hours a week which consists of shift work and I seem to cope better now with the lates to earlies than ever before. All in all t3 seems to suit me better than the levo ever did.
Thanks Joanna for that info, Im going to ask my GP see what she says. I think your marvellous doing a 30hour shift - I would like to say that im better at night, but unfortunately that,s not the case, im normally in bed no later than 10, never mind. Kind regards Kath xx
oh dear, oh dear. It's what many of us can't get well without and it's what most doctors won't prescribe mainly through ignorance. Not to worry, when I said NDT to my GP she said "What's that"? Natural Desiccated Thyroid that is porcine dried thyroid. As it contains all the thyroid hormones then it works. It worked 100 years ago and it works now whereas thyroxine T4 only therapy just does not work with a large number of hypothyroids especially the long standing and the Hashimoto ones.
Great news Carolyn - keep up the good work...and keep us posted.
All I can say is, how lovely! what a blessing to hear a happy experience. I do hope you continue to make progress and enjoy life again.
As an Athyrotic patient I believe NDT would work for me, although I did tootle along for a long time on Levo 150 until the doc (nearly typo'd 'dic' then - should have left it in) reduced it to 100.
The craziest argument against NDT is that the hormones are not in the same ratio as human thyroid. That may be the case, but sure as little green apples, T4 alone is not the same as human thyroid! What a flawed and transparently stupid reasoning!
That's great , Carolyn. It's so useful to hear positive outcomes from NDT after experiencing both levo and T3. Your experience certainly mirrors mine. So great to feel almost normal, isn't it?
I haven't been able to work for years. Getting my vitamins and minerals and adrenals sorted out helped me to get back to work but it was hard. I have found work much easier this week even though it's the most hectic half-term of the school year.
I'm taking Nature-throid and it seems to be suiting me at the moment
I am also very interested in what you have been doing to sort your adrenals and how they where or symptoms before and after. And of course how long time did it take?
I can't think what all my symptoms were but fatigue, insomnia and orthostatic hypotension were some of the symptoms. See response to Pettals' comment for what I did. It really is worth taking the time to rest whenever you can, if you can. I know it's not possible for everyone but every little is worth it.
For adrenals I took Nutri Adrenal plus all the recommended supplements. I also rested as much as possible with my feet up. It did get boring after a while. I watched all the seasons of Friends and Stargate SG-1 and other stuff too. Once I started getting better I found that I was able to read more too. Also relaxation exercises, breathing and gentle exercise (walking is great) followed by a rest is great. It does take time but it is worth doing.
Hello everyone. This is my first posting on this forum
Good luck, Carolyn. This NDT sounds interesting. I’ve been on Levo 75 for a while now, but still feel fatigued and depressed. I’m just 50, but feel much older. I’ll certainly be looking into this ndt. I really hope it continues to work for you, Carolyn.
Hi Carolyn so pleased you are finding a way to live with hypo. I'm another who is on the daily struggle!!! Wondered how you get your NDT dos your GP prescribe for you. I'm on T3 and T4 at the moment and def have had improvemnent (esp mentally) on T3 but still unable to work outside the home and generally 'up and down' like many others on this site.
Thanks Jeannie. My GP wasn't allowed to prescribe it but he is supporting me and monitoring me, which is the next best thing I don't think he will recognise me when I go back to see him. I'm not hunched over or moving slowly or in constant pain any more
I have to ask - how do you get it then? Are you going privately or have you found a helpful specialist? I wish my doctor would 'support' me! I don't ask for names if that is not possible, but just how you went about it. Just in case.
Hi carolyn, if your GP is not able to prescribe can you tell me how you do get it. I'd really like to try this option (i'm sure i'm not the only one!) Do you go to a private doctor for a prescription? Jeannie
Sorry for the confusion. NDT contains t3 as well as t4 but the ratio of t3 is slightly higher than the human thyroid. I am only taking NDT but the extra t3 it contains seems to suit me.
I had my thyroid removed (second op) at 36/7 years of age and continued to work full time for 23 more years while also caring for my sick mother and, later, my disabled husband, - I was on 150 Levo.
At 60 I moved home, new doctor cut my Levo from 150 to 100 and I then had to retire, now unable to walk, look yellow, pain, dry skin, eczema craquele, have cholesterol 9.4 and multiple other problems, and he says it's depression! Is he away with the fairies?
Oh dear..I would definitely say your doc is away with the fairies! NDT would help you, it helps anyone who has been on levothyroxine. Levo is the absolute poor relation in terms of thyroid treatment.
Congratulations. You have taken control of your health. I wonder how many people really do okay on T4 monotherapy. Of the six people with hypo I have met in real life (nothing to do with this site or others), only the two with the mildest hypo had no complaints. The others still had symptoms. And none of them had heard of possible adrenal problems.
I've had the opposite experience. All the people I know in person do very well on levo. Isn't that funny. I know there are many people who don't get on with it though. Maybe NDT is the answer for them too.
I was not too bad on Levo so long as it was 150. Had a few issues but very little compared to now. Mind you, I have always been inclined to keep quiet and do as I was told! I've changed lately.....
n that case marram you go straight back to your doctor and tell him that you were much better on 150and that you would like to go back to that. Why don't you split one of the hundreds and make it up to 150 .
He doles them out like gold-coated sweets, 28 days' supply at a time. Absolutely no room for manoevre. Very frustrating. I am seeing him on Tuesday, let's see what transpires. If you hear an explosion in the distance you know it will be me blowing my top...if I can find the energy.
Surely if you run out early because you have been taking 150 and feel better he can't leave you with none until the 28 days are up. If he did that he should be reported like many other doctors we hear about on here.
yes, those are the people who are picked up by the test, I think. They are just simple clear-cut cases of the thyroid not producing enough hormone. However, if you are more complicated, you have been ill for a long time before the almighty test says you are hypo or you are not converting the hormone properly, for example, then I don't think T4 is good enough. Also is there any research into how effective T4 is to take long-term. I know one person who has been okay-ish on it for years, she still feels tired, but recently became quite ill again.
I know 4 people who are hypo and on T4 alone, one of them is fit and healthy, the other 3 are overweight, puffy faced, can barely walk, have high cholesterol, feel the cold, thin hair, dry skin etc but they put it down to age and weight, as that's what the Dr says is to be expected!
I was only on T4 for just over a year, felt fine on it, only to get ill 3 months ago. Now I have to heal my adrenals and my B12,D3 and Iron are all low which I bet the other 3 people all have issues too, and the 4th one who is healthy now will no doubt have issues with later on.
I have been taking T3 for 11 days now, and my temps are normal and I have no brain fog, sleeping better, going to the toilet regularly, have more energy, no more dizziness and loss of balance, more more feeling like I have lead weights for arms, legs and head, hair has stopped falling out.
I have also been on Iron and Vit supplements for around 5 weeks and eating little and often. But adding the T3 has made the biggest difference.
After Christmas I'm going to try NDT, just need to get more supplies as I don't want to start and then run out of it.
I personally don't believe that T4 alone can be enough especially for those of us who have had partial or total thyroidectomies.
Good to hear you're doing well Carolyn, don't forget to increase the dose as recommended as I heard that staying too long on one dose to start is what can cause issues.
I am increasing my dose weekly at the moment. I feel an initial improvement but start getting tired toward the end of the week and I know that is because I am not yet at the right dose. I'm looking forward to getting to the right dose because I know I will see even more improvement.
No-one has answered the question, if your doc will not prescribe NDT how do you go about getting hold of it? I was put on it when first diagnosed and got on OK, then changed docs and was put on levo. Since then two changes of docs. each one reduced by dose and I have felt awful for 10 years or more. I had to take early retirement as I kept falling asleep at work! Many thanks in advance to anyone who can help!!
I have read the leaflet from the website but it does not mention the ingredients anywhere...it states that the product includes T3 and T4 naturally but does not state where it is derived from.
I am guessing this is desiccated porcine thyroid...Am I right?
Desiccated thyroid or thyroid extract, refers to porcine (or mixed beef and pork) thyroid glands, dried and powdered for therapeutic use. Pork (or mixed beef and pork) thyroid preparations were developed in the late 19th century, and are still used today to treat hypothyroidism, the condition of having an underactive thyroid gland. This product is sometimes referred to as "natural thyroid", "natural thyroid hormones", "pork thyroid", thyroid USP, thyroid BP, or by the name of a commercial brand, such as "Armour Thyroid" or "Nature-Throid" & "Westhroid".
Desiccated thyroid has been described in the United States Pharmacopoeia for nearly a century as the cleaned, dried, and powdered thyroid gland previously deprived of connective tissue and fat... obtained from domesticated animals that are used for food by man (USP XVI). In the last few decades, pork alone is the usual source. Historically, before modern assays, the potency was specified only by iodine content ("not less than 0.17% and not more than 0.23%"), rather than hormonal content or activity.
Brands include Forest Lab's Armour, and Naturethroid & Westhroid by RLC Labs. Also available is a new generic NP thyroid by Acella Pharmaceuticals. Canada's desiccated thyroid is made by Erfa and is called Thyroid. All consist of desiccated porcine thyroid powder, differing only in the binders and fillers.
i really hope you keep on improving Carolyn, i look forwards to reading your progress, i am at that stage where i am definately sure i shall have to help myself soon, i am not getting anywhere with my DRs. practice, hugs x
Brilliant news Carolyn I am also doing very well on NDT (per my recent blog) and am really feeling pretty much back to normal I too will be interested to see if you prefer It to T3 Hope the progress continues.
Hope your recovery doesn't take too long! Don't get tempted to do too much once you start feeling better. Build up slowly so you don't undo it all. Wishing you all the best. C x
That's great that you've got on so well on NDT I'm on NDT and have to say I feel soo much better on it too (was on Levo for years but had awful symptoms). It really does work xx
I might need advice from you at some point! I will most probably try NDT soon (under the treatment of Dr P.), I have not tried any other thyroid hormone yet apart from Nutri Thyroid. Would you say NDT is the way to go? I understand people on Levo- T4 only for a long time do better on NDT but as I said I've never been on T4.
Hi Ocean - my personal opinion is that NDT is superior to Nutri Thyroid and easier to adapt to than T3 only. However, if you have never tried T4 maybe it would be good to try this first as I believe that about 85% of people are OK on T4 only, and it is much cheaper/easier to dose.
I read some where that a good order to try things in is:
T4 only, T4/T3 in combination e.g. NDT or a synthetic T4/T3 combination, then if all of this fails T3 only.
Dr P is very good at this so I would see what he recommends but NDT does seem to have been the answer for me Good luck.
Everyone is different. I never had any trouble on T3 only, in fact I was very well on it. I am also not at all sensitive to medication so I have been able to increase my dose of NDT by 1/2 grain a week with no problems whatsoever. But some people find the direct T3 is difficult to get used to and may benefit from NDT instead. All I can say is that you need to see what suits you best. Theoretically, I like NDT because it is the closest to what our thyroids naturally produce, although they're not quite there.
I agree with Clare that most people do well on the right dose of levo and that should be the first option because it is easier to dose and is cheaper than having to pay for T3 or NDT.
I was initially prescribed T3 years ago but a few years later my GP told me I had to switch to levo because it was "better" and "everyone takes levo now". I never really did well on levo. I didn't know about NDT at the time but I have been reading a lot lately and felt that perhaps NDT would be better than T3, as I have an arrhythmia that the cardiologist cannot find a reason for, so I decided to give it a try. So far so good
Thank you I am getting better gradually. I'm feeling ready to increase to 2 1/2 grains but I don't want to rush it. I know I will feel better when I have got to the right dose. The improvements so far are telling me that much. Even my brain is working better now. I had three great ideas in 10 minutes at school today. I did tell them not to expect any more for the rest of the year, lol
Hi Carolyn, SO glad to hear that things are improving and so quickly! I started ERFA last year after 6 years of levo.... and after 3 weeks felt wonderful.... unfortunately went back to work too soon after that..... whilst I'm trying to stabilise things after a bad year (mostly from adrenals) - I still believe that having normal on ERFA last year for the first time in years, I'm going to stick with it too...... I felt terrible on levo..... keep us posted - impressed you can cope with noise - that's my big problem! take care Caroline
Hi CarolynB. Just joined as having been diagnosed with M.E. for the last 20 years I'vejust been told I'm hypothyroid! So have done years of resting to no avail, maybe I'll get somewhere now if I can get thyroid treatment. Have a Dr appointment 1st May and I want a natural treatment i.e. NDT as opposed to a chemical as I just cant take anything chemical/man-made. Must also get my adrenals sorted. Any advice gratefully received.
This is so helpful. This is very encouraging as I decided this week no matter what I am switching to NDT. This living as a zombie on levothyroxine I have done for two years too long. I am very happy for you.
Hi Pettals: could you also tell me, too, please. I can see that your post regarding this was a year ago, but I've only recently joined these forum chats. Thanks...... ThyroMAN xx
Thanks, Pettals. Not at all sure how pm works. Do you just have to access my page, and leave your message? or do I access yours? Sorry for being clueless! I'll see what happens by clicking on yours....... ThyroMAN x
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