Advice on dosing NDT ,changing from Levo . - Thyroid UK

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Advice on dosing NDT ,changing from Levo .

Val-55 profile image
56 Replies

I've decided after over 10 years of taking Levo and constantly suffering joint pain , to try NDT , my daughter has changed to it and looks and feels well . I take 50/75 alternate days of Levo .. If I take 75 each day I get hypo symptoms with high t4 levels yet t3 is still low .Dr is not interested in the slightest , Levo is all there is I've been told on umpteen occasions ...I thought I would not buyArmour as it is so expensive ... Which would be the best to buy Nature thyroid or erfa ... And what dose should I buy , I think there is a conversion chart I've seen here somewhere on starting it ...I will get private blood tests ..your kind advice on starting this would be appreciated .Val

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Val-55
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NatChap profile image
NatChap

Have a read through some of my posts, quite a bit of info there as I have recently switched to NDT too x

Val-55 profile image
Val-55 in reply toNatChap

Thankyou , I've been reading your story ,,, very helpful . Do you feel better for changing ? The worry for me as always is going against the Dr but I feel now that the NHS is flagging and we have to take care of ourselves more .im sick of feeling older than my years !, x

NatChap profile image
NatChap in reply toVal-55

I was feeling fantastic but am suffering another setback at the moment that could possibly be due to over/under medicating so I'm going to have to experiment a bit. There has been a massive improvement in my moods and energy though so I would recommend you go for it. At worst if it doesn't work you go back to levo so you can't really lose x

Ruthi profile image
Ruthi

If your T3 is low you probably aren't converting very well, which was my problem. As a result the T3 hit from the NDT was fantastic! I'd say go slow and start with half a tablet, given that you have trouble raising your dose.

You could beg a few tablets from your daughter to see how you go before investing too much - or will that not work?

I take Thyroid-S. Its cheap and easily available, as is Thiroid. Both are from Thailand, but I haven't heard of anyone having quality problems.

You will need to test occasionally to make sure that your dose is roughly right - not hugely expensive from Blue Horizon, and for an extra tenner they test B12, ferritin etc to make sure you are OK on them too.

Kazza8 profile image
Kazza8 in reply toRuthi

Hi, can you tell me where you get yours from as I am about to try NDT and am researching where best to get it from.

Gilly81 profile image
Gilly81

I take Thyroid S and found it excellent. I have also tried two other kinds of NDT but returned to Thyroid S as it is cheeper and I could tell no difference. I was ill on Levo for ten years, I wish I had changed to NDT years ago! I have tried Nature Thyroid, Thyroid S and W Thyroid, all the same for me. I have been on NDT for just over a year and my blood pressure is right down and I have more energy and my dentist tells me my mouth is so much better, on Levo I had to chew gum all the time, which I hate, because my mouth was so dry.

Val-55 profile image
Val-55 in reply toGilly81

Thanks for your reply ...did you find a difference with the brands , what was the problem ? I'm not really sure what to buy .my daughter is taking Armour ..too expensive ! It is the joint soreness and lethargy that gets me down I feel so much older than mid fifties !,yes I get the dry mouth thing too

Gilly81 profile image
Gilly81 in reply toVal-55

No problem with any of the brands so stuck with the cheapest Thyroid S.

Kazza8 profile image
Kazza8 in reply toGilly81

Hi Gilly, can you tell me where you get your NDT from and how much? I am changing onto NDT so am trying to find out good suppliers and how long they take. Many thanks. Kazza

Gilly81 profile image
Gilly81 in reply toKazza8

Hi Kazza8

From <an online source>. Do not think we are allowed to say exactly where on here. <hint>. Usually costs around £35 to £40.

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Kazza8 profile image
Kazza8 in reply toGilly81

Many thank,s Gilly, I thought it was ok if it was By Private message - did I not private message you? I am rubbish on here.

in reply toGilly81

I also find Thyroid-S to be an excellent drug. Personally, I feel more stable on it than I have on other brands (maybe because of the sustained-release component in it?)

Erfa used to be an excellent drug, but has been having some quality and consistency problems in the past year or so, after production was moved from Belgium to Spain. I have no idea if those problems have since been addressed as I switched to Thai NDT around this time, but others should be able to comment on this.

Carriebaby profile image
Carriebaby in reply toGilly81

Did you have a weight problem on Levo ? As I have put on 2.5 stone plus high cholesterol and a low temp 😬

silverfox7 profile image
silverfox7

Different brands is down to personal preference really. We tend to react differently. I started on Thyroid S with no probs but when it was getting near to ordering some more I decided to give Thiroyd a go as less fillers. I couldn't get on with it at all! The only effect it had for me was a ranging headache and going downhill fast! I changed back! May be it was a filler that upset me, I don't know but I've since noticed that many try one and then the other and it seems to be an either/or for many. If you are good with one you tend not to be on the other and I've seen other brands can be the same.

jacquelis2 profile image
jacquelis2

Hi Val - I am exactly in the same position and taking the same amount of Levo but for 5 years. Although I feel OK I would prefer to take NDT. You can buy ThyrioidS from <online source> and I am very tempted. Just scared of upsetting everything and feeling ill again. My Dr. is OK with me having a go but I will have to buy them myself but they are not too expensive considering how many tablets there are in pack. Just making the move scares me.

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Val-55 profile image
Val-55 in reply tojacquelis2

Yes I know how you feel , but at least your Dr is aware of you wanting to try , mine dismisses it straight away ....I'm just unsure of the purity of drugs from Thailand , and I think it's that that worries me more ..Armour is so expensive but perhaps safer ? I really don't know !

NatChap profile image
NatChap in reply toVal-55

I started on Thiroyd from <online source> as it was cheap just to see if NDT would make a difference and then after a couple of months of improvements I switched to the more expensive Nature Throid (because I was worried about Thai purity).

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Gilly81 profile image
Gilly81 in reply toVal-55

I think Thyroid S from Thailand has an excellent reputation.

in reply toGilly81

I take Thyroid-S without any problems; in fact, it has worked better than Armour and Erfa. I know other members take Thai NDT with great success as well.

Gilly81 profile image
Gilly81 in reply tojacquelis2

£35 to £40 For Thyroid S for 1000 tabs.

I put up with feeling awful on Levo for 10 years, just wish I had changed years ago.

Carriebaby profile image
Carriebaby in reply toGilly81

Where do you get your Thyroid S from as I've looked on <online source> but can't find it ?

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Gilly81 profile image
Gilly81 in reply toCarriebaby

It comes and goes, it will be back but there are other ways, not sure myself but maybe someone here can help. Or ask on the Stop the thyroid madness Facebook page.

Gilly81 profile image
Gilly81 in reply toCarriebaby

Just checked, here it is <online source>

Do not go for express delivery though! Costs a small fortune, usually takes around 2 weeks.

[ Edited by admin to remove reference(s) to specific online source(s).

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Carriebaby profile image
Carriebaby in reply toGilly81

Did you loose weight on NDT as I've steadily put more weight on taking Levothyroxine for 18 years ! Came off it this week !!

Gilly81 profile image
Gilly81 in reply toCarriebaby

I went up to a size 26 on Levo now I am a size 16. Still 2 stones heavier than I use to be but far better than when a size 26/28! Why do doctors not notice how badly we do on Levo?!!!

jacquelis2 profile image
jacquelis2 in reply toGilly81

Hi Gilly - What dose of Levo. were you on and what is the equivalent ThyroidS Dosage? Did you change immediately or did you do so over a period of time? Thanks, Jax

Gilly81 profile image
Gilly81 in reply tojacquelis2

I stopped Levo one day and started NDT the next. I followed the Stop The Thyroid Madness protocol. One grain I think at first, but check with them and gradually over a few weeks to 5 Grains split 3 in the morning 2 in the evening. We are all different and it is trial and error for a while till you find what is right for you. Most have blood tests done privately to help see where they are at, I cannot afford them so go by how I feel.

I was on 150 Levo.

Glynisrose profile image
Glynisrose

a To find out what fillers are in which NDT is a minefield. But you need to discover if you are intolerant or allergic to fillers.

Val-55 profile image
Val-55 in reply toGlynisrose

Yes I can see that is a big problem ...I'm always itching on Levo !

Glynisrose profile image
Glynisrose in reply toGlynisrose

Its difficult but if NDT does not work for you just stop and resume levo. Its not a sensitive drug that needs time to be absorbed its instant. What have you to lose? Start on a low dose and build up. DON'T just do a swap. Build up your dose over a few weeks.

Val-55 profile image
Val-55

Thankyou ... So start on the very lowest dose , just once a day ? My daughter seems to have to take it 3 times a day splitting the dose I think ... She has built up to this in 6 months to keep her t 3 level in range . ... So I would take less than 75 equivalent thyroxine I've been taking ? Thanks Val

BadHare profile image
BadHare

Hi Val,

I get WP Thyroid, which is great for me, but the only other NDT I've tried is Thyro-Gold, which was worse than none at all. I'm going to try Nature Throid, which s the same brand as WP, but with different fillers, so it's a bit cheaper for a larger dose that I can split.

I believe 1 grain is approximately 65mcg of T4, so that might be right for you.

I found it cheaper to buy a 2 grain dose & split it. It's about £66 for 100 2 grain WP, including postage & import tax.

Mel

Carriebaby profile image
Carriebaby in reply toBadHare

I have just started taking nature thyroid from USA I was told to try this brand by a friend but I see others on here seem to like thyroid S very confusing to us new bees

in reply toCarriebaby

Some NDT brands suit some better than others. You may have to try a few different brands before you find out which one works best for you.

I hesitated to take Thyroid-S for a long time, as I did not like the idea of all the fillers, and I was also a bit worried about purity...but, to be honest, it's the NDT brand that works best for me. It gives me a steady flow of energy throughout the day, without peaking like some other brands (it contains a sustained-release substance called Eudragit). Before Thyroid-S, I took another Thai brand, Thiroyd, but it did not work nearly as well as Thyroid-S. Armour and Erfa have not worked well for me either; Armour was reformulated a few years ago, and something seems to have happened to Erfa as well. But others have no problems with them, so it's all about trial and error.

Carriebaby profile image
Carriebaby in reply to

Where do you get your Thyroid-S from ?

in reply toCarriebaby

I would be happy to PM the info to you, but I order it from the UK, at a much higher cost than if I had ordered it directly from Thailand. I have had shipments from Thailand confiscated by customs in the past and prefer to know delivery can be guaranteed. As far as I know, it's legal to import prescription drugs for personal use in the UK (unlike where I live), so you should have no problem ordering from Thailand and get 1000 pills for a fraction of what I pay. Many members here order from Thailand and can PM you the details.

Carriebaby profile image
Carriebaby in reply to

Hi that would be great my email address is as follows <email address> I don't mind if it comes from Thailand or Uk both suppliers would be fab x

[ Edited by admin to remove email address. We very much prefer people not to post their email addresses for their own protection. The Private Message system allows you to communicate and exchange email addresses, if you wish, without posting them. ]

in reply toCarriebaby

OK, PM on its way!

helvella profile image
helvellaAdministrator in reply to

It is 100% illegal for a UK source to supply UK residents with prescription-only medicines which any such product would be if supplied legally.

Some of the websites which appear to be UK-based are anything but and actually have their operations in many countries but make it not obvious to purchasers.

in reply tohelvella

What about Thai NDT?

helvella profile image
helvellaAdministrator in reply to

Illegal for a UK company to supply it to a UK resident.

There is an outside possibility that a licensed specials importer could supply a pharmacy with it - but I really doubt it is something anyone would do.

The fact that the products have a known T4 & T3 content makes them automatically prescription-only.

in reply tohelvella

This information is from the website on an international drugstore. Under "country restrictions" it says about the UK:

Import of small quantities of non-controlled prescription drugs for personal use does not require an import permit provided it is for personal use of self or member of the immediate family.

The MHRA recommends that a copy of your prescription accompany the package.

Orders of over £15.00 are subject to delay by HM Revenue & Customs. VAT and £8.10 Royal Mail International Handling Fee will have to be paid in order to collect your parcel. Please note that the purchaser is responsible for these charges.

Import of Melatonin is prohibited.

These rules are more "generous" than those applicable if most if not all other EU member states, but I have always wondered how to interpret it...does "not require an import permit" equal "legal to import without a prescription even if it's a prescription only drug"?

helvella profile image
helvellaAdministrator in reply to

It is perfectly legal to import prescription-only medicines solely for the use of members of your household.

The issues are about quantity (you'd have to be willing and able to put up some sort of a case that it really is for your household), and what is a household? I'd suggest it is a small group of probably-related people living together in one home.

The other issue that many miss is that the UK also has Controlled Drugs which are always illegal to import under almost any circumstances, or even possess, without a prescription. These include DHEA.

You may not import for friends, relatives who are not in your household, for profit, etc.

I am not a lawyer - do not call me when you get arrested! :-) :-)

in reply tohelvella

Promise:-)

Thanks for this clarification, because I have always been under the impression that it was possible to import prescription only drugs for personal use for UK residents, whereas most other European countries either have a complete ban in place or you need a prior authorisation from the Ministry of Health...which you'd most likely not get if you wanted NDT.

I've never understood why DHEA requires special treatment, but it seems to be banned in most countries. It is a prescription drug in Belgium, but it's very expensive compared to what you pay on most online sites.

helvella profile image
helvellaAdministrator in reply to

The history of drug classification is full of mysteries. Why DHEA but not some other very closely related substances?

Much seems to have been knee-jerk "We must do something about xxxxx" and that something as to re-classify as a Controlled Drug.

Have a suspicion that melatonin is not quite as evil (in the eyes of the UK establishment) as once it was.

Carriebaby profile image
Carriebaby in reply to

Hi I'm on my 3rd the day of NDT and have started on 1 grain 65mg taking half a tab in the morning and six hours later taking another half tab. I was on 100mcg of Levo and took my last dose on Sunday night !! I am feeling a slight tightness in my throat does this mean I'm on too high a dose as I would have thought 1 grain is a lot less ???

Carriebaby profile image
Carriebaby in reply toBadHare

I have nature thyroid that I got from the USA I'm not sure what fillers are in this brand and have only started taking it so not sure how it will go

BadHare profile image
BadHare in reply toCarriebaby

Look at the company's website. They have an information page.

1 1/4 grains is the equvalent of 100mcg of T4, but you may find it stronger if it works better for you.

M*

Carriebaby profile image
Carriebaby in reply toBadHare

What company website would that be ?

BadHare profile image
BadHare in reply toBadHare

The company that makes your NDT.

Carriebaby profile image
Carriebaby in reply toBadHare

The company is in the USA ! I went onto a Google search which said 65mg of T3 T4 1 grain was equivalent to 100mcg of Levo I'm so confused !! Have I over medicated replacing a grain

BadHare profile image
BadHare in reply toCarriebaby

Replacing 100mcg of levo with mcg of NDT?

I'd think not, as I thought 1 1/4 was 100mcg of T4, but I'm not an expert. I think 1 grain is less.

It depends on the person taking it, & how well they react to natural or synthetic hormones.

How do you feel? Temperature? Pulse?

Carriebaby profile image
Carriebaby in reply toBadHare

I don't know how to take my pulse but have taken my temp which is 35.8 this morning so up from yesterday which was 34.5. I have an app with doctor this after noon as been suffering headaches most days so not sure until tested that I may have high blood pressure too

Carriebaby profile image
Carriebaby

I have just started taking NDT this week I was on 100mcg Levo for 18 years with the last 15 being a living hell. I am currently using nature thyroid 1 grain 65mg I have split the tablet and take it first thing in the morning then second half six hours later I don't take my tea with milk until after an hour after taking and also take my B12

In between my 2 doses ! I'm hoping to feel better soon but will up my dose in a fortnight by another half grain if I still feel under active. Good luck take the plunge like me as things can't get much worse than staying on Levo

hohoho profile image
hohoho

Hi Carriebaby, I just wondered how you are doing? I am considering swopping ….

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