TOUGH DECISION: NDT or NOT?: I am on 30 mcg of T... - Thyroid UK

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TOUGH DECISION: NDT or NOT?

GKeith profile image
25 Replies

I am on 30 mcg of T3, self-dosing the T4 myself, up from 50 mcg my endo already prescribed 3 months ago and now he won't write a prescription for 75 mcg of T4 without taking off 10mcg of the same T3 that he himself prescribed three months ago along with 50mcg of T4 about six months ago. The funny thing is he was ready to write the prescription this morning, for 75 mcg of T4, but then said he would write it only if I lowered my T3 from 30 (where I feel good) to 20. And, he then has the (thoughtless) audacity to say: “Everyone is different and reacts different BUT I can't prescribe 75 mcg of T4 without lowering your T3 by 10 mcg's.” Makes no sense at all because if I am taking 30 mcg alreay, with 50 of T4 why would you need to lower that to take a higher dose of T4. The only reason I wanted to try it was because when I started having conversion problems, almost a year ago now (time goes by faster the older we get) my T4 skyrocked just over the top of the range and my FT3 was down at the bottom

and, as my last blood test was the opposite, the T4 was low range and the T3 was high in range I figured that I would raise just the T4 a bit and see what happened. I was, and am, prepared to lower the T4 but only if I need(ed) to.

Very frustrating. Now, I know an endo who prescribes NDT and am seriously considering whether or not it would work for me. I know only that it is measured in grains and 1 grain = 38 mcg of T4 & 9mcg of T3 or about a 4 to 1 ratio.

Anyone who has ever been undermedicated or on T3 only or NDT, I would appreciate hearing your thoughts also on what you think of NDT? The amazing (actually Capitalistic) thing is the absolute desecration of NDT by the profit-driven Capitalist drug manufacturers, doctors, insurance companies and everyone else making money from a pill that makes them so much money they will, and do, lie, cheat and steal to “force” Levo (literally) down your throat, which is happening everywhere around the world and their media-driven falsifications of NDT and (especially) Levothyroxine. If you are an “innocent bystander” someone not sick and knowing nothing about medications you would think that NDT is poison and Levo is a miracle drug. Anyone's comments and/or thoughts would be appreciated.

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GKeith
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25 Replies
greygoose profile image
greygoose

10 mcg T3 is equal to approximately of 50 mcg T4. So, you don't gain with that swop! He really is chancing his arm there and, frankly, I don't think he has any idea what he's doing.

However, you'd have to take a lot of NDT to get the equivalent of 30 mcg - about 3 1/4 grains. And that would give you a lot more T4 than you probably need if you don't convert well. But, quite apart from that, NDT doesn't suit everyone. It was worse for me than T4 only. I can only seem to survive on T3 only.

But, you'll only know if you try. It could work wonderfully for you! So, as long as you have the possibility of going back onto T4/T3, give it a try and see. But, don't burn you boats. Don't lose the T3 that you know works for you in order to jump out of the frying pan into the NDT, with no way back. :)

GKeith profile image
GKeith in reply togreygoose

My thoughts exactly; that's why I kept quiet when he said he couldn't give me more Levo without taking away 10 mcg of Lio. It's crazy. I do feel much better on T4, T3 combo but I keep wanting to try NDT just to see but, as you say, it's very hard, in today's heartless societies, to "take away" something before you have a replacement, esp. where medicine is concerned. I believe my T4 is converting but I haven't the will power (or desire) to take T4 only again when it works so much better with the T3. They make things so hard on everybody, especially themselves, by lying so much it pains my heart. The thing is I'm old enough to realize that it is not the thing we do that bother us it is the things we don't do that end up bothering us, well, me, anyway. Then there's this and similar information that just makes me think more: verywellhealth.com/natural-...

greygoose profile image
greygoose in reply toGKeith

Well, they're sort of obliged to say don't self-treat, aren't they. But, many, many people do.

I understand about regretting what you don't do more than what you do do - although, with me, it's about 50-50! lol I'm just saying make sure you cover yourself just in case it doesn't work. :)

GKeith profile image
GKeith in reply togreygoose

Thanks. May peace be with you.

greygoose profile image
greygoose in reply toGKeith

And with you. Merry Christmas. :)

GKeith profile image
GKeith in reply togreygoose

And to you, and a Happy New Year to yourself and your family

greygoose profile image
greygoose in reply toGKeith

Thank you. :)

GKeith profile image
GKeith in reply togreygoose

Quite welcome.

TSH110 profile image
TSH110 in reply toGKeith

You could source your own NDT and try it anyway whilst stock piling a very useful stash of the other! Non compliance - they positively encourage it with their tomfoolery!

Judithdalston profile image
Judithdalston

Frankly if i’d wanted to experiment raising the levo by 25 mcg i’d have chopped some of my 50 mcg prescription up, ie add 25 mcg to 50 mcg, and kept my T3 as it is, thus avoiding a Gp visit and ‘threats’. Then test privately after 6 weeks, though you might have felt a difference before that and reverted back. You don’t mention previous blood test results; I personally do not function at the commonly quoted 25 mcg levo ‘equals’ 10 mcg of T3, nor would the NDT ratio you quote at 4:1 suit me. Everyone is different but i’d hang onto the 30 mcg T3 if it’s from the NHS as long as possible.

GKeith profile image
GKeith in reply toJudithdalston

It's free here in the U.S. Just need a GP or endo to write a prescription but these endo's aka "specialists" carry a co-pay of $20 bucks a visit so I'd rather have my GP write it but they are the ones who sent me to the endo. So? BTW, when I say I'd been self-medicating I was cutting the T4 in half and taking it with a whole 50mcg to equal 75 mcg.

Peace be with you

Judithdalston profile image
Judithdalston in reply toGKeith

Ok; as Greygoose says it is always a difficult decision...I get my Levo thru the NHS but DIY T3 from abroad as have a Gp surgery who has never suggested seeing an Endo and rely on TSH result only. You’ll know from this forum many members DIY relying mainly on forum advice. Good luck, and season’s greetings.

GKeith profile image
GKeith in reply toJudithdalston

I don't know how things are in UK but, if these are your rights, you should demand them and either get a group of similar-minded "voters" to see your local congressman, or MP there, and have these things changed. I do have, always, a back-up plan, I have access to a GP who is also an internist and who gives me any blood test I ask for and also I have, being a veteran, to the VA hospital and their doctors; I just have to wait longer and travel much further: a couple miles to my endo; 45 miles to the VA endo. DIY should never have to be an option but, in this world, we are many times, hamstrung due to the system. Peace be upon you and yours & a Merry Christmas & happy New Year.

radd profile image
radd

GKeith,

Your endo was reducing your T3 dose to accommodate the extra T3 that a T4 dose raise should generate.

If you are switching to avoid taking two pills, the chances are you will have to add T3 anyway to get the same T4/T3 ratio that you are presently medicating and say you feel good on.

Although 1 grain of NDT offers only approx 9mcg T3 and 38mcg T4, it is biologically equivalent to 100mcg T4 as relies on adequate iron, nutrients, etc and the patients ability to convert.

As said on your other post, tread cautiously when introducing NDT with low iron as many members have experienced difficulties.

For whatever reasons T4 levels are often seen as low in people also medicating T3. It is the T3 result that is important as this is the active hormone that brings well being.

GKeith profile image
GKeith in reply toradd

Thanks for you knowledge. I am going to keep on dosing myself on T4/T3 until it becomes obvious it's not feasible for me, in which case I will try NDT, before realizing the only one left is T3 only. Merry Christmas & a Happy New to you and yours and may peace be upon you all.

For a second I thought you and me had the same Endo.

GKeith profile image
GKeith in reply to

That's a reputable thought; it's kind of like saying: I thought we breathed the same air. Except for the same air being breathed you have to actually think for more than a second.

in reply toGKeith

Yes we breathe the same air silly. I just thought that your endo sounded just like mine with treatment and tsh ...everything is tsh. I wonder if they dream about tsh I think mine sits around for 6 weeks trying to plan a way to destroy my health just a little bit more.. :)

GKeith profile image
GKeith

No, believe it or not they're actually ignorant of what they do, just as the people who crucified Christ were, but, I do also believe that many of them are far too sure of themselves, which leads to vanity, which leads to selfishness, which leads too ignorance which leads to our lack of treatment, along with their brazen theft of our time and a much longer wait to be healed, if we ever are. The truth usually come in wrapped in plain brown paper, devoid of any expectations but allow me to offer you a very Merry Christmas & Happy New Year and may the Lord's peace rest upon you and your families spirits.

TSH110 profile image
TSH110

If NDT is a poison then I’m a very venomous rattlesnake! It is utter rot. NDT is a perfectly good medicine that has a long history of controlling hypothyroidism it is the nearest thing to what our own thyroid once made. I would recommend it as a thyroid hormone replacement therapy without hesitation. In my case it has prove to be far superior to Levothyroxine very easy to self medicate and has improved my health immeasurably. I now add a small amount of T3 c 4mcg and that seems to be working nicely with 2 grains ThyroidS. I have the DIO2 mutation that impairs my ability to convert T4 to T3 meaning Levothyroxine would never ever make me feel properly well again. Despite the endo knowing this they were happy to leave me sick on it and keep stumm about the two other medications that would have helped me - I feel my blood boil.

If you want scientific proof take a look at the excellent paper which has just been posted:

healthunlocked.com/thyroidu...

GKeith profile image
GKeith in reply toTSH110

I thankful for you information. I am on 75 mcg of Levo and 30mcg of T3, so what would you suggest if I switch to NDT, 1 grain or ....?

TSH110 profile image
TSH110 in reply toGKeith

I was very cautious and swapped from Levo to NDT using the thyroid patient advocacy guidelines I substituted 1/4 grain NDT for 25 mcg Levo slowly switching over to NDT as per their instructions until I felt normal again which was at 1.25 grains of NDT where I had been on 125mcg levothyroxine. I think it is something you have to work on - different NDTs are not directly equivalent for example. The TPA give good guidance as to how you determine the right dosage. After two years I suddenly neeed to increase my dosage - no idea why - to 2 grains I tried some FDA approved NDTs to check my ThyroidS was not to blame but they were pretty much similar and the ThyroidS seemed to be as good if not better. I added in a small amount of T3 to see if this helped, given the DIO2 polymorph I have. I feel it has indeed improved things. I don’t think I could get it any better. I don’t bother with any blood tests I just go on how I feel and any dose changes are always done very gradually to gauge any subtle changes in how I feel. I must add I had heart problems with bad angina so this also cautioned me to tread carefully with T3 via NDT. I am pleased to say the angina massively improved in NDT where it had plagued me on levothyroxine, and was bad prediagnosis.

I am not very good on T3 and equivalence with NDT I’m afraid. My NDT is 9mcg T3 and 38mcg T4 per grain I think. I have now checked and those are right. I will post the TPA link for you.

TPA guidelines link:

tpauk.com/main/article/trea...

You may find the stop the thyroid madness list of NDTs and what is in them of interest too:

stopthethyroidmadness.com/a...

They have a slightly different NDT dosing guide to TPAU which some people have used here to good result. They are a bit evangelical in their promotion of NDT, so best to be aware of that. They do discuss iron deficiency here too or link to more info:

stopthethyroidmadness.com/n...

I had vitamin d3 deficiency on levothyroxine but have no idea how my iron was. I found everything seemed to resolve on NDT.

GKeith profile image
GKeith in reply toTSH110

I appreciate your time and relevant information. I will try it as soon as I can find an endo who will prescribe it. Thanks again. And Merry Christmas and a happy New Year to you and yours. Peace be with you all also.

TSH110 profile image
TSH110 in reply toGKeith

Knowledge is power 😊 it is a pleasure to be able to help you have the information you need to make the best possible choices for your journey back to good health! Have a fab Christmas 🎄

GKeith profile image
GKeith in reply toTSH110

Thank you.

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