NDT

[SusB]

I want to start taking natural desiccated thyroid hormone but GP won't prescribe it. It seems people on this forum know where to buy it safely without prescription. Can someone please message me with this information? I have tried messaging individuals but get no response.

[SeasideSusie Remembering]

Hi SusB

I imagine the reason you have had no response to your private messages is because even though you have been a member since March there is no information in your profile and you have made no posts until this one. We don't know anything about you, your thyroid journey, what thyroid meds you currently take, what your levels are or if there is a problem with something other than your thyroid, which there very often is in the form of low nutrient levels, members not realising they have autoimmune thyroid disease aka Hashimoto's so are not addressing it, gut/absorption problems, etc.

If you would like to post your latest test results and fill us in on your thyroid journey, members will respond. Ideally we need to see results for

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

[SusB in reply to SeasideSusie]

Thanks for responding! My TSH has been high for over 10 years and I have many symptoms of being hypothyroid (feeling cold all the time, fatigue, lack of concentration, hair loss). Tried Levo several times but don't like the side effects (on lowest does of 25mcg). My latest TSH was 8.5 (my GP doesn't seem to do any other thyroid tests). Now convinced NDT is a good thing to take. GP refused my request for a prescription on a 'named patient basis'. I'm cautious about where to buy it from on internet. Whether buying from Thailand is a safe option or not. I just don't know and need some advice - please!

[SeasideSusie Remembering in reply to SusB]

SusB

If you've only ever been on 25mcg Levo then that's not enough.

Presumably you were diagnosed with hypothyroidism. What were the test results then?

Were you retested 6 weeks later and have a dose increase, and retesting/increasing dose every 6 weeks as per protocol.

Some people do feel worse when first starting Levo, especially at 25mcg (normal starting dose should be 50mcg unless a child, elderly or you have a heart condition).

The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel.

When were you last tested and with a TSH of 8.5 were you given an increase in your dose of Levo?

If you can get the other tests done then you can do what hundreds of us here do and that is a private test, by fingerprick or venous blood draw. All the tests I mentioned can be done with

Medichecks Thyroid Ultravit medichecks.com/thyroid-func... (excellent value with the discount today)

Or

Blue Horizon Thyroid plus Eleven bluehorizonmedicals.co.uk/t...

At the moment NDT is not the answer, getting the full picture and finding the problem is. Come back with full test results and we can help.

Please also include reference ranges for any test results as they vary from lab to lab and we can't interpret results without the ranges.

[SusB in reply to SeasideSusie]

I have been diagnosed hypothyroid. I have never stayed on Levo for very long as I don't like the headaches and tinnitus I get with it. So I have been taking nothing.My TSH has been steadily rising over the years and now it has hit 8.5I am 65 and want to try NDT. My ferritin and Vit D are checked regularly and I take supplements when they are low .I have had enough of Levo and have made up my mind that want to try NDT. I wanted to get some advice on this forum where I can buy it, Perhaps someone out there will help?

[SeasideSusie Remembering in reply to SusB]

SusB

My ferritin and Vit D are checked regularly and I take supplements when they are low

But are they optimal? They need to be for thyroid hormone to work - and that's any thyroid hormone. Levels needed are

Vit D - 100-150nmol/L

Serum B12 - at least 550, preferably top of range

Folate - at least half way through range

Ferritin - half way through range.

And when you supplement if they are low do you take a maintenance dose when they reach optimal level? Do you know about the cofactors for the different vitamins?

Members want to help but NDT isn't necessarily the answer. Like I said, first of all you need the full tests to get a proper picture to know the best way forward.

[SusB in reply to SeasideSusie]

Yes they are all now within range and yes i take maintenance doses.

I do understand these things!

NDT may or may not be the answer but I would like to try it.

You sound like my GP - keep trying this or lets wait and see about that...

If you don't want to help me find a safe supply of NDT then perhaps you could pass this on to someone who can.

[SusB in reply to SusB]

You know I wanted to try NDT safely and with some support - but you have just made me feel patronised and that I am on my own with this.

[SeasideSusie Remembering in reply to SusB]

SusB

I'm trying to help but if you don't want it that's your choice. You will find that the responsible responders on the forum will all ask the same questions and suggest the same things as I have.

[SusB in reply to SeasideSusie]

I don't want to take Levothyroxine any more.That is my choice. I have been through all these tests and discussions. Lots of people on the forum are taking NDT and I want to as well. I am not asking you for advice on levothyroxine or vitamins. I wanted advice on where I can purchase NDT.

[RedApple Administrator in reply to SusB]

SusB,

Do you know which brand of NDT you want to try? There are various brands, and some people do well on one brand but not the others. If you know which one you want to try, you may get some messages with suggestions on where you can source it.

[SusB in reply to RedApple]

Thank you for listening to my choice.

My preference would by Nature throid because it has the least additives. But I am happy to take suggestions. My concern is safety regarding counterfeits and also reliability of supply. I notice thyroid S seems to be offered on the internet from Thailand. I am open to any advice, really!

[RedApple Administrator in reply to SusB]

There are two Thai brands, Thiroyd and Thyroid-S. Generally, people only get on with one or the other. They are the most affordable NDTs.

Nature-Throid was popular with many people for many years, but I understand the manufacturers changed the formulation recently and some people have reported that it no longer works for them.

Be aware that supplies and sources of NDT are always volatile and whichever one you go for you may have difficulty sourcing it at some stage down the line.

[ShinyB in reply to RedApple]

Hi, what's the key difference between Thiroyd and Thryoid-S please? What are the reasons some get on with one or t'other?

[RedApple Administrator in reply to ShinyB]

ShinyB, I'm sorry I can't really answer your question. Unfortunately we don't have much genuine information about this because the manufacturers are under no obligation to disclose any info to the public (unlike in the UK and US). Ingredients are not listed on the bottles, and if you search the web, you may find lists of ingredients, but they have never been confirmed by the manufacturers. I assume though that the excipients of each are different and, just as with levothyroxine and liothyronine, this will have varying effects on people.

[shaws Administrator in reply to ShinyB]

We are dealing with hormones rather than 'medications' and I think that's where the problems/misinformation can arise.

I, like many others, have tried most options and it is trial and error.

Sometimes it can be the fillers/binders in the product that our body doesn't like or make us feel worse.

We don't need to purchase a large amount inititally, a few months will do as you will increase it by a small amount every 2 weeks until you are symptom-free. That is the real aim - to relieve all symptoms. We should also take pulse/temp several times a day when beginning until on a dose which suits (makes you feel well) and record because when we take an optimum dose we might believe we are overdosed if pulse goes too fast or temp high and find that we don't have a higher temp and pulse has settled down.

Also we do not publish where to source on the open forum as these are 'prescription medications' so if a member knows they send a private message to the enquirer.

It is also helpful for members if the person gives some history in their profile then we don't have to keep asking the same questions, i.e. when diagnosed: with what: medication and dose etc.

[silverfox7 in reply to ShinyB]

I spent s long time studying what others were saying about NDT although I had been on it before but I did notice that some tried one and found it good but couldn't tolerate the other. I was very happy with Thyroid S, still am, but it has lots of fillers so bought Thiroyd, but couldn't tolerate it at all! I tried adjusting the dose but always had unbearable headaches and nausea so went back on tgecobe I felt happy with. But you can get reactions with any type and brand. Your problem on Levo may well have been down to your bodies not liking the fillers as they differ from brand to brand. Another problem we see often is the dosage isn't fine tuned yet but you get these problems with either medication as well so it's often a slow journey which ever we decide and sadly we can't speed things up. Some have tried and often had to step back and start again. Good luck in whatever you decide to do and keep posting your results and members will help you along the way.

[ShinyB in reply to silverfox7]

Thank you. I think it's possible to get a 'taster' supply in small amounts of the two NDT products mentioned. I will investigate again. Kell-E was it you who told me about this? Any chance you could send me the link again please? Oh how I long for a fast forward button!

[Kell-E in reply to ShinyB]

Here is the best breakdown of the NDTs I've read:

stopthethyroidmadness.com/a...

[silverfox7]

Sorry you felt upset when no one was jumping in giving you NDT advice. There is a very good reason. Levo is a good starting place and easier to administer and it will also show whether you have a conversion problem which is quite common. It can do this because you have the ability to compare your FT4 readings with your FT3 readings and so it is obvious if you have a problem.

However once you take T3 in any form then results are read differently. TSH will be suppressed-hated by doctors, FT4 can be lower but FT3 will be high in the range if you are on the correct medication. The clue is in FT4 can be lower. It's not saying it will be halved or whatever so it is by an unknown amount so you cannot compare it with FT3 reading. So FT3 reading presents high if on the correct dose and is the only accurate reading once you move away from taking T4 (Levo).

So if I was to be starting out again I would happily start out on T4 to see what the state of my thyroid health is and if it presents a problem get that addressed first. Often it's down to low minerals and vitamins and we often suggest getting those tested as well, especially the Fab Four as I think of them as they help our thyroid to work better so testing Vit D, B12, folate and ferritin are so important. In range is not good enough and we need optimal levels but ask SeasideSusie for help with that as she knows what they should be and how to get them there.

I started my thyroid journey over 30 years ago and was given NDT on the NHS but after a few years a strike stopped it being imported so I went over to Levo and was as good with that but in later years it failed me and my Vits etc dropped to rock bottom. I so much wanted to go back to NDT but read many times that it can be difficult if my levels aren't right which by now there weren't. So I got those all sorted and felt much better then I was able to start NDT without any problems. Patience is needed with thyroid problems and often it's easier to start in an easier way and get used to our bodies response.

[SusB in reply to silverfox7]

Thank you for this helpful response.

One thing I was unclear about- when you say the FT3 reading 'is the only accurate reading once you move away from taking T4 (Levo)' Not sure what you mean as I thought you had been suggesting to not worry about a high FT3 reading? maybe I am not reading this correctly.

[silverfox7 in reply to SusB]

It still has to be in range but it will be towards the top of the range but because it is high it is showing you that you are adequately medicated. Because of that your T4 drops as your body doesn't need it any more and your pituitary no longer needs to send a message (TSH) for the release of more medication as it already is replete. My Endo who told me this said TSH could actually be Zero but I don't think the testing machines are able to report that. Hence it you are taking any form of T3 then it is essential to always get T3 tested and it must remain in the range.

Hope this helps.