I'm presently taking T3 only but I am asking my endo for NDT tommorrow. The only trouble is if he gives it to me he will then schedule an appointment for 3-6 months in the future and refuse to see me again until he sees the blood tests. I realize I should have replaced him long ago but he's one of the few endos you can get NDT & T3 from. Anyone have any similar experiences? I am really fearing this appointment tommorrow.
NDT or T4-T3: I'm presently taking T3 only but I... - Thyroid UK
NDT or T4-T3
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GKeith
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Hi there - Could I ask why seeing him again in a few months is an issue?
I don't know if you have a problem with levothyroxine but I prefer levo and lio combo to ndt. This is because the t4 to t3 in ndt is a fixed ratio but on Combo you can alter t4 and t3 dose independently.
Having said that folks do also add levo or lio to ndt to alter the balance.
It's really hard to get T3 out of endo's, much less GP's. With NDT it looks like to me, anyway, you got a pretty good "head start" on the T3 to begin with.
But, you're already taking T3. Why not just add a little levo to it?
Greygoose, I am barely able to tolerate T4 anymore and I can’t figure it out with my brain being all but dysfunctional. I don’t know where to place the blame as I had 4 teeth pulled by the dentist, about a month ago, and they were horrible extractions. The first one broke two teeth and the second one the dentist cut them out with a small saw, as they were bacterially infected and I believe I still suffer from those bacteria or something that causes these headaches. Before I went to this dentist, 2 years ago, I was taking: first 50 mcg of T4, 30 T3, then 75 with 20 then 100 with 20 over a period of 2 years and never had any conversion problems but now even 50 mcg of T4 begins the headaches, while, when I drop the T4 and go to T3 only, the headaches partially leave with it and I am left with only mild headaches but with the “killer headaches” that feel as if someone stuck an ax into my brain, just lurking underneath and just before an attack I get very weak and extremely light-headed to the point of passing out and not being able to read because half the words are “blacked out” if you know what I mean. This is the worst in 30 years of hypo because I literally have “lost my way” for about an hour, or three, as I am completely incapacitated. Other than seeing my endo, who is totally useless, this afternoon, I am totally “lost.” No one can understand what I am trying to say about how I feel so I don’t say anything.
Those teeth extractions must have been a horrible shock for your body. Given that, I don't really think this is the best time to be making changes. You need to give your body time to rest and recover. Otherwise, you won't know if it's the changes to your medication that is helping, or just your body getting over the shock.
But, if you know that T4 doesn't agree with you, I don't understand why you want to start taking it again. And, NDT is just that: T4+T3. And, given that you can't tolerate T4, and have been on T3 only for a while, there would probably be far too much T4 in NDT for you, and not enough T3. Why not just stay on T3 only - at least for the time being.
Well, I really thought T-4 didn't "agree" with me because when I was on T4-only it was the only hormone I could blame but when I went on T4-T3 it always seemed to "work." For over a year. The last was 100 mcg T4 with 20 T-3 & it was "good" for 45 days. I'm trying to figure out the dental problem & the impact it may have had on my hypo, as the tooth was a bacterial infection. I want to be able to take T4, of course, but don't if it isn't working. It's just the why (isn't it working) I'm trying to figure out and why does T-3 alone seem to work almost always?
Well, T4 doesn't 'work' for me, either. Although I don't blame the T4, it's my body that's at fault - if fault there is. I'm on T3 only. I've tried a couple of times to add in some T4, but I always felt worse, so gave up.
I want to be able to take T4, of course
Why? Plenty of people are very happy on T3 only.
I think it's anybody's guess what you don't tolerate T4 well. And, there's no point in pondering the imponderable. You can't and that all there is to it. Same here. I don't know why. I don't actually care why, I'm just glad that T3 does the trick.
I can't help feeling you tend to over-think things a little. 
I do exactly that. I am now taking 30mcg's T3 and adding what I think may help of T4, I took 50 yesterday with 10 T3 at 10:30 pm and then woke up 6 hours later with an unbelievable headache & urge for more T3, which I took 10 mcg and then slept two hours but when I woke up my urge was too strong for more T3 and I took my last 10mcg's. I believe the time in the morning had something to do with it, what exactly I'm not sure but it certainly worked necause because I lasted until 3:00 PM, nine hours later before taking 10 more T3. I just saw my endo & could only talk him out of 10 more mcg of T3, making a total of 30mcg's of T3, even though I asked him for 40 mcg's. I believe I need probably 50 mcgs of T3 to feel optimum but, I am only guessing and even already doubting myself because I am actually losing weight and not gaining any, even though I eat huge amounts of food and sleep 12 hours a day. I'm debating myself if I will take any T4 but I doubt it or maybe lower it to 25 mcg's. I've done this so many times I can't remember them all and so far it looks like I will end up on T3-alone if I can just get some more T3 because the T-4 never does any good. Peace to us all in these crazy times, only made so much worse for us.
I would have thought that by now, you would have convinced yourself that T4 just doesn't suit you - it certainly doesn't help you. So, why not just give up and accept the inevitable? It's not worth the pain.
I think you're probably increasing your T3 too fast. It should only be 5 mcg every two weeks.
You're probably right about the T4 but I'm pretty stubborn, esp. considering I tolerated it for so many years & my tooth did have a bacterial infection, which can stay in your bloodstream for god only knows how long. Yeah, I still have NDT in the back of my mind but am forced to realize that it's off the table if I can't tolerate T4 anymore. The thing about the T3 is that, for some strange reason I wake up every night, and always at the same time: between 4 & 6:00 AM and with a headache I know won't go away without taking some "more" T3 and, when I take 10 micrograms of T3, it (so far) goes away within the next 15-20 minutes & these headaches are real Tsunami's I cannot adequately describe for the throbbing, spinning pain that leaves me dizzy, befuddled and unable to walk a straight line.
Have you had these headaches investigated? They might not be anything to do with your thyroid.
I've had 3 brainscans, the last one a year and a half ago, nothing to them, apparently. A lot of people tell me it could be a migraine, which I don't know how bad they are but I will trade mine with any "migraine" anytime.
I'm afraid I don't know a lot about headaches and their causes. Sorry, I can't help you there. But, it does sound awful.
And, if the T3 helps with the pain, then the best thing is to continue with it. And forget the levo, you probably don't need it.
greygoose, you don't realize how lucky you are to not suffer these headaches. I'm taking 30 mcg of T3 & cutting a 100 T4 pill in quarters still trying to be able to tolerate enough to be able to at least try NDT; maybe foolhearty but we're all different. I gotta make sure I didn't bypass something that would maybe get rid of these headaches. Peace be with you & all (sufferers or not) on this website.
Oh, I do know how lucky I am. Both my mother and my daughter suffer from them - although, I don't know if they're the same as yours, of course, but bad enough. I feel myself blessed that they missed a generation.
We are all different. And, I certainly wouldn't have your persistance and perseverence. I always take the easy way out. I'm not convinced that trying NDT is worth all your suffering. But, you must do as you think best. I hope it's worth it for you.
you will not be able to get ndt as there is shortage of it worldwide. I also take ndt and a lot of endos cant issue prescription and neither can gp's.
Not licensed? It's been around 150 years? Are they that ignorant?
Its still not licensed and no they know about ndt but cannot prescribe as its not liscensed
NDT is available on the NHS on a named patient only prescription.
It is required for your doctor to support you in the application to the CCG for funding as NDT is a lot more expensive than T4 - Levothyroxine. Surprise !! Surprise !!
If you check out ' open prescribing ' website, and go into analyse and type in Armour as the product name for NDT you can see by CCG or surgery where, if any, NDT prescriptions are being written.
The private prescriptions ate bring stopped. I used to get them but every nhs hospital and gp are amping down. Plus he may not be zble to take Armour as it depends what his t3 and t4 results are and how many grains he needs. Each brand of NNdthas different ingredients so needs an endo to explain what he needs and even then he may struggle to get what he needs as i said before there is a shortage of ndt in date worldwide
I am just stating the fact that NDT is available on a NHS prescription and your doctor needs to support you in the application to the CCG confirming that you need this medication.
I'm not disputing anything, and since I self medicate with NDT am fully aware of the current supply issues, whether it be for the quality or quantity of brand required.
Its irrelevant if your doctor and endo support you, its the people above them who decide you cant have it. My endo and gp support me buying ndt so i dont self medicate as i also take z little levothyroxine and see my endo every 4 - 6 months for the last 21 yrs
Think - Big Brother !!
I think your playing Russian roulette self medicating but is your life and your death.
I really think Big Pharma is behind this. T-4 means just one thing to them: MONEY! They make too much of it on T-4 & it doesn't pay them to make NDT.
Big Pharma can't patent NDT as it's been what's called " grandfathered " into current day medicine because of it's historic and successful treatment record for over 100 years.
Nothing to stop them applying for a patent on a specific form of desiccated thyroid. For example, dried using some special process. Or made into a something like a liquorice "bootlace" from which you could measure your dose in centimetres (or inches, as it is the USA).
Do also remember that levothyroxine had also been grandfathered but quality control issues were so bad that the FDA demanded that all manufacturers applied for authorisation as if a brand new product.
Exactly right, which means they also can't make any (more) money off it.
Actavis is a big pharma and they manufacture amour which is ndt
Actavis (who had changed their name to Allergan) were recently taken over by AbbVie who make Synthroid.
I posted a few days ago:
Here is an interesting link about them
Wiki apparently, couldn't find it.
You could always draw their attention to it. I contacted them once when they put the wrong information on there.
The link works fine.
Actavis Generics[1] (formerly known as Watson Pharmaceuticals and Actavis plc, prior to the acquisition of Irish-based Allergan Inc) is a global pharmaceutical company focused on acquiring, developing, manufacturing and marketing branded pharmaceuticals, generic and over-the-counter medicines, and biologic products. Actavis has a commercial presence across approximately 100 countries. The company has global headquarters in Dublin, Ireland and administrative headquarters in Parsippany-Troy Hills, New Jersey, United States.
I have been looking on companies house about some of the directors of these pharmaceutical companies. It seems anyone can start a pharmaceutical company if you have the money. Companies house asked me to take part in some zoom panel and I refused because I don't want anyone to identify me. They even offered me a voucher to take part which I declined.
That's because they are 4-sale & you aren't. They have a hard time when dealing with honest people, who speak the truth when they are not selling the truth.
It is because I fill in surveys about the site and I have drawn their attention to some things that are not accurate on there. I get alerts about different companies I follow on there. It is interesting reading about all the different companies some directors have.
All research is good; if it reveals the truth, which can than help someone who couldn't, otherwise, help themselves.
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