NDT with hash

Please can someone give me advice I’m seeing a private endow on Monday to hopefully go on NDT. My pro base antibiotics are over a 1000 tsh is 20.3 free thyroxine is 9.130 and free t3 is 4.31 I’m unable to tolerate levo and was very ill on it. I have cfs as well. Can you please tell me the best NDT to ask for also how long before I notice a difference? I’m struggling terribly I’d really appreciate a reply with advice thank you

[SeasideSusie Remembering]

Can you please tell me the best NDT to ask for also how long before I notice a difference?

That's a very individual thing. What suits one person wont suit another.

These are the brands of NDT:

stopthethyroidmadness.com/a...

Not sure where you are (UK or otherwise?) so not sure what will be available to you.

If you are in the UK, this article on ThyroidUK's website about where to get NDT with prescription should help

thyroiduk.org/tuk/treatment...

[Hidden in reply to SeasideSusie]

Thank you, I’m in London uk. I read an old post saying NDT I’d not good if you have hashmo please can I have your view on this? Thanks again x

[SeasideSusie Remembering in reply to Hidden]

I don't have Hashi's and NDT didn't do it for me. I'm sure there are Hashi's patients here that take it. It's a very individual thing. It suits some but not all. The ratio of T4:T3 in NDT is right for some but not all,which is why some do better on synthetic T4 and T3 so they can tweak the doses to ge the right ratio for them.

Just be aware that Armour is the most expensive NDT. The non-prescription Thai NDT brands seem to be the cheapest and many members do well with them.

[Hidden in reply to SeasideSusie]

Thank you that was helpful information. I’ve only a few days before I see the private Dr and desperate for direction and guidance. My nhs Dr refused to give me t3/t4 together that’s why I’m paying to go private thanks again x

[MaisieGray in reply to Hidden]

Given that the largest majority of people with hypothyroidism also have Hashimoto's, if that were an absolute fact, then by definition, very few people would do well on NDTs - and that is definitely not the case. There is a view that the autoimmune disease wrongly recognises the porcine/bovine thyroid of the NDT, as human thyroid, and increases its attack. I don't know that there is any scientific evidence to support that allegation, but in any case, many people with Hashimoto's do do well on NDT. That's not to say that it is universally perfect for everyone, but nor is Levo or T3; it's all very much trial and error to find what works for each of us individually.

[Hidden in reply to MaisieGray]

Thank you x

[danym in reply to MaisieGray]

when I tried nature thyroid my antibodies doubled in the 6 weeks period tat I was on it, I have hashi, I was very dissapointed it did not work for me. I had terrible joint pain, it might have been because my ft3 was over the top range and my ft4 was very low. I see a lot of people do so well on it and I was so disappointed that I did not.

[MaisieGray in reply to danym]

Are you sure the increased symptoms and antibodies during that 6 week period were related to the Naturethroid, and not to a Hashimoto's flare?

[danym in reply to MaisieGray]

yes, I retested again after a while when I went back on tirosint at that time, just make sure you test your antibodies before and after to see if there is a difference in case you don't feel well on it.

[MaisieGray in reply to danym]

Fair enough, except that you could have come out of the flare by that time perhaps?

[danym in reply to MaisieGray]

I don't know, I just had a lot of bone pain on it and felt very tired with heart palps and insomnia, that stopped when I switched to tirosint. I was really looking for a miracle, as everybody raved how good they felt on NDT, even one of my friends loves armour and would not take anything else.

[MaisieGray in reply to danym]

When I took Naturethroid I was perfectly fine, and I know of a couple of people who are taking it currently and are likewise doing well. But depending when you were taking it, there have been recent reports of others doing badly on it for whatever reason.

[danym in reply to MaisieGray]

I took it almost 2 years ago

[MaisieGray in reply to danym]

Ah, unlikely to be connected then.

[Hidden in reply to Hidden]

I have Hashimoto's (diagnosed 19 years ago) and have been on NDT for the past seven years. I now take Thyroid-S from Thailand because it's both better (IMHO) and much cheaper than Armour and Erfa. I have never had a problem taking NDT; in fact, I feel much better on it than on T4 only. Before switching to NDT, I was on 200 mcg of T4 without much symptom relief. Of course, back then I did not know that T4 needs to be converted to T3, and if the conversion process is impaired (which it often seems to be in Hashi patients) then no amount of T4 will be enough for you...you need T3.

I find the T3:T4 ratio in NDT to be just right for me, but I know some combine NDT with T4, T3 or even take all three. It's highly individual and it can take a long time to find out what works for you.

[Hidden in reply to Hidden]

If the private endow gives me a script for NDT how much will the chemist charge me? I’m not sure if I can sustain this if it’s a lot of money, and will have to try think of another way I’m too ill to do intense research so please please help with advice. Was diagnosed 2 years now and not resolved thank you x

[Hidden in reply to Hidden]

It depends on each country’s own rules. Belgium, where I got NDT prescribed, does not reimburse NDT as it’s considered ‘organ therapy’ which is not covered by the Belgian NHS.

Cost will wary according to dose. I have taken between 3-5 grains of NDT daily and paid ca 1300€/year. That was before switching to Thai NDT four years ago so maybe it’s even more expensive now.

[Hidden in reply to Hidden]

Thank you for the information I can see now that I won’t be able to afford it x

[Hidden in reply to Hidden]

Can't you try Thai NDT? It costs a little over 100 USD for 1000 pills and is equally, if not more, effective than many prescription brands IMHO.

[Hidden in reply to Hidden]

Thank you I would do this, can you tell me how to do it please? Is that the actual brand? Really appreciate your help x

[Hidden in reply to Hidden]

I will email you info on how to order as we are not allowed to post that on the forum. There are three brands of Thai NDT: Thyroid-S, Thiroyd, and TR Tman. There is no way to tell which one would work best for you; it's all about trial and error. It's possible to order smaller packages (I think they contain 250 pills) so that you can try them out first and see how you react to them.

What makes them different are the fillers used. Thyroid-S and TR pills are coated; Thiroyd pills are not. TR does not contain lactose. Thiroyd contains relatively few fillers, no cellulose and is often said to be the closest to old (pre-reformulation) Armour.

Each pill of Thyroid-S and TR contains 38 mcg of T4 and 9 mcg of T3, whereas each pill of Thiroyd contains 35 mcg of T4 and 8.31 mcg of T3. They are only available as 1 grain (60 mg) pills.

Link to suppliers in PM.

[SlowDragon Administrator]

As you have Hashimotos you need vitamin D, folate, ferritin and B12 tested

Coeliac blood test too if not already on strictly gluten free diet

[Hidden in reply to SlowDragon]

My vit D is at 48(a bit low) also I’ve low calcium levels but the rest are on or close to target. Trying to avoid gluten and soy but not been tested for coeliac but have crippling ibs I don’t know if that’s a symptom? Thank you x

[SlowDragon Administrator in reply to Hidden]

Vitamin D needs to be at least 80nmol. Many of us with Hashimoto’s find around 100nmol is better

Better You vitamin D mouth spray is good as avoids poor gut function

Suggest you try 3000iu and retest in 2-3 months

Calcium with naturally rise as vitamin D improves

What are the actual results and ranges on other vitamins?

Yes IBS is common gluten intolerance symptom

It does need to be strictly gluten free to be effective

[Hidden in reply to SlowDragon]

I will post my results for you, I’m very grateful to you. My gp said my Vit D should be 50 and to take a supplement. Which I do every morning but will buy the spray if you think that would be better. I’m also taking protein powder so can you tell me if that’s a good thing please?

[SlowDragon Administrator in reply to Hidden]

Many of us with Hashimoto’s need a higher protein level

I have never taken protein powder but Isabella Wentz The Thyroid Pharmacist talks about this

Vitamin D if nmol - GP only has to prescribe to get to 50nmol

But many with Hashimoto’s or hypothyroidism find higher levels are better, at least 80nmol

[Hidden in reply to SlowDragon]

Can you tell me what I do to send the pictures of my results please, what symbol is it I click on thank you

[Hidden in reply to SlowDragon]

Please can you advice me as I realise now I won’t be able to afford private prescriptions do you know if nhs endo will prescribe me t4 with t3? He’s not been helpful so far apart from offering beta blockers and steroids to help me tolerate the t4. Are you allowed to advice me what to do please? I’m feeling wiped out and not sure what to do now thank you x

[SlowDragon Administrator in reply to Hidden]

Sorry for delay in reply....currently on winter sun hols topping up my vitamin D...as per gastroenterologist recommendation!

Most endocrinologists are Diabetes specialists or have been bullied by CCG into not prescribing T3

Hence recommended to get list of thyroid specialists from Dionne at Thyroid Uk

please email Dionne at

[e-mail]

Roughly where in the UK are you?

It is still possible, but difficult (and post code lottery) as to wether you can get T3 on NHS

Personally I tried both NDT and T3. Couldn't tolerate either until strictly gluten free and all vitamins optimal.....now on NHS T3 ....more info on my profile

My endo will not consider NDT

T4 plus small dose of T3 is probably more flexible

It can require extremely fine tuning in dose and timing

[Hidden in reply to SlowDragon]

I sent an email but it bounced back, is there anyway you could ask for me please? I live in north London HA1 sorry to trouble you today really appreciate your help x