T3 or NDT?: I have been self medicating with T... - Thyroid UK

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T3 or NDT?

GotTheTShirt profile image
32 Replies

I have been self medicating with T3 in addition to my prescribed levo after becoming fed up with doc telling me I'm normal. I reduced my levo my 50mcg 10 days before starting and the huge rush of hypo symptoms after only a week was completely debilitating. Luckily within 2 days of starting t4 my recovery was amazing. I was really surprised how quickly I felt the affects of the new meds and also how quickly I was affected by reducing the levo as I thought it stayed in the body for over a month.

I plan to keep going on t3 but find I get a bit of a buzz about 30 mins after taking a tablet. I do feel a lot better but still not 100%, I still seem to run out of energy very quickly. I would just like to know if anyone else finds they buzz or am I super sensitive to t3 and should maybe try NDT? I'm now taking 75mcg of t3 (split in 3 doses - 6am, 10am, 2pm). I haven't had lab done yet but have slowly increased until I felt better. Will I ever feel 100% or should I just feel luckily that these meds have given an improvement?

If I do try NDT can this be bought over the counter in Greece (where I get t3) and what is it called in Greece.

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GotTheTShirt
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32 Replies
Clutter profile image
Clutter

T4 has a half life of around a week although it can take up to 4 weeks to completely clear your system. You could have dropped 50mcg T4 the day you added in 25mcg T3 without going hypo.

75mcg T3 is roughly equivalent to 225mcg T4. If this is much more than the equivalent T4 you were taking it might be an idea to have a TFT to make sure your FT4 and FT3 aren't too over range.

Even when thyrod meds are optimal it can take a long time to feel good and 100% might not be achievable. I certainly wouldn't be satisfied with aiming for the 80% which some sadists suggest we should be satisfied with. It helps if your ferritin, vitD, B12 and folate are all high in range.

I've no idea whether you can buy NDT in Greece. Sourcing NDT without prescription is very limited now the credit card cos have withdrawn services from online pharmacies but there are a couple of sources available. PM me if you want sources.

JLTsirius profile image
JLTsirius in reply toClutter

I don't find an online source of NDT (non prescript) difficult to come by? Perhaps just lucky is one of the few options left

JLT

Clutter profile image
Clutter in reply toJLTsirius

Since end of April many of the online pharmacies have stopped supplying new customers without prescription (although they may continue to supply existing customers) due to pressure from Visa and MasterCard.

marmaris profile image
marmaris in reply toClutter

I have my Endo appointment on the 25 of this month. She has trialled me on T3 NHS 20mcgs for the last 3 months. I take Levo 100mcgs also. Not felt a great difference if anything weight gain. Was on cynomel (bought myself) before and felt it was stronger. I would love to try Amour but what do you think the chances are of getting that? I know I could ask for it on a named patient basis, but I will try. The trouble is they do not know of it in England, and if it is not on their list they will not supply it. Any advice anyone please?

Clutter profile image
Clutter in reply tomarmaris

You may need an increase in T3 if it hasn't made much difference. If Cynomel was 25mcg this would tend to confirm it. My 75mcg T4 and 20mcg T3 has been raised to 100mcg T4 and 40mcg T3 and has made a big difference. I raised dose myself and endo agreed to increase the prescription but suggested I split T3 x 2 rather than the one mornng dose I took.

If you are asking for NDT be sure to describe it as dessicated pig thyroid as your endo may not be familiar with the term NDT. Good luck!

marmaris profile image
marmaris in reply toClutter

Yes I used to take it twice a day just not feel anything with nhs t3 and gaining more weight.

Clutter profile image
Clutter in reply tomarmaris

I haven't noticed any difference from Tiromel 25mcg and NHS 20mcg other than the obvious 5mcg difference.

I have only been split dosing a couple of days so too early to decide whether or not it is a better protocol.

sazzyb profile image
sazzyb in reply tomarmaris

marmaris, my friend decided she wanted to try Armour but as we live somewhere only slightly bigger than a village she didn't think she stood a chance. Imagine her surprise when she rang her endo who said 'sure, I can prescribe that for you..' :-D

I'd ask the pharmacist who sells you your T3 what the position is about NDT. No need to be shy about it - it's all perfectly above board where you are. Unlike here :o(

GotTheTShirt profile image
GotTheTShirt in reply to

I'm in the uk with a hopeless GP Humphrey that's why I've resorted to seld meds. I get my t3 from Corfu as a very good friend lives there.

Are you on ndt and did you try the t3 route first?

in reply toGotTheTShirt

I am on NDT. Self-medicating. I did try T3 but couldn't get past the increase in palpitations it gave me. I don't like palpitations.

Get your friend to ask the Corfiot pharmacist about NDT? If the answer is no, PM me and I'll tell you where I get mine.

marmaris profile image
marmaris in reply to

could you pm me too please

Blake profile image
Blake

Yes, t3 can be used with natural desiccated thyroid (NDT) and thats what it is called if you ask your pharmacy. Some just know it as "Armour" but that is not the best brand. NDT alone is best, because it contains the proper amount of T1, T2, T3, and T4, like your body produces. The only reason you would ever want to use t3 only is if you have a reverse T3 problem. There is no reason you should use synthetic T4, (Levo) at all, or in combination with t3. I have a source where you can order 1,000-1 grain tablets of high quality NDT with no prescription for about $67 USD. You can om me too and compare with Humphreys

Here's a T3 group you can join by invite that is really knowledgeable and helpful. facebook.com/groups/Recover...

GotTheTShirt profile image
GotTheTShirt in reply toBlake

Hi Blake, thanks for your reply. I'm just looking at options with the ndt. Having to remember t3 3 times a day and if I don't take on time I'm knocked out with fatigue is a real pain. Taking it has given me an amazing improvement but I'd like to think there is an even better solution. Thank you pm sent.

Blake profile image
Blake in reply toGotTheTShirt

Youre welcome! NDT is also 3 times a day, and you have to remember to raise up every 10 days or 2 weeks, so its not all that easy either, but its definitely the best unless you have other issues. I know, it sucks, Im still suffering and its been more than 2 years. I have high total iron and low storage iron, so NDT dont work that good, I get high reverse t3 (ft3 pooling) So I use a combo of t3 and ndt.

in reply toBlake

Blake, if you are still here, I have high blood iron with low storage iron as well. Do you know what causes that?

helvella profile image
helvellaAdministrator in reply toBlake

Blake,

Do you have any evidence that desiccated thyroid contains T2 and T1?

I happen to think that what this link says is very close to spot on:

tiredthyroid.com/blog/2012/...

Rod

Blake profile image
Blake in reply tohelvella

Well, the only proof I have is what all the labels say, and the millions of patients that have great results. Unless the labels are all lying. Since its a myth, I highly suggest that you stick to synthetic, or whatever you are having your success with..Your doctor knows much more about it than I do. All the best

Blake profile image
Blake in reply toBlake

By the way Rod...I see you did your due diligence on this site that "you happen to think that what this link says is very close to spot on"...Hahaha.. This lady's expertise seems to be about as much as mine is, she is a thyroid patient. "I am a 56-year-old female left hypothyroid from radioactive iodine treatment for Graves’ hyperthyroidism"

"I offer hormone counseling with a minimum initial charge of $30 for 30 minutes. Anything over that is $1 per minute. For more details, email me at barb @ tiredthyroid.com".

Maybe I missed it, but she don't list any credentials in her bio. Other than to add a disclaimer

"So please do not take anything written here as medical advice"

Blake profile image
Blake in reply toBlake

Sorry, one last thing. The title of that post says "Desiccated Thyroid contains T4, T3, and rT3, but little T2 or T1".

I don't know where she gets the idea that they contain RT3. Most of the labels list T4, T3, T2, T1 and calcitonin as the 5 hormones they contain. Usually only the T4 and T3 amounts are given because there is no established value for T2 and T1. That's why you have never heard of a test. But yes, of course NDT only contains small amounts of T2 and T1 because that's all your body produces is small amounts.

But she indicates in one of her posts that she uses natural desiccated thyroid so I don't really know what the point of the article is. Other than to say its a myth that it is superior because "Yes, T4 and T3 are components of natural desiccated thyroid, but T2 and T1 are not produced in the thyroid gland". And "Studies show only trace amounts of T2 inside the thyroid". Haha..So...So what if there's only trace amounts of T2 and T1 in NDT? She has some good info, but maybe she's a bit on the hyper side?..haha

Anyway, sorry if I went too long, and I didn't mean any disrespect. Were all just trying to help each other, so differing points of view are a good thing.

helvella profile image
helvellaAdministrator in reply toBlake

She clearly says she is a thyroid patient.

I do not endorse her expertise. Merely identify that one article appears close to what I believe to be true.

helvella profile image
helvellaAdministrator in reply toBlake

Blake,

I do not have a pot of each of the available desiccated thyroid products to check. However, the prescribing information for Armour does not mention T2, T1 nor calcitonin.

frx.com/pi/armourthyroid_pi...

Nor does the equivalent for Nature-Throid:

nature-throid.com/images/Na...

Nor can I find it on Erfa's equivalent document:

eci2012.net/Thyroid/english...

I would welcome anyone telling me where there are copies of the labels which say T2, T1 or calcitonin. However, even if these substances were present, I have never seen any claim as to the quantity. Therefore, that could vary from batch to batch without anyone even being aware, let alone anything done to correct it.

I do indeed take "synthetic" levothyroxine. However, I very well know someone who has been taking desiccated thyroid for many years and any attempt to try either levothyroxine or liothyronine ends in disappointment, even in small doses along with desiccated thyroid. So I am absolutely, 100% in favour of desiccated thyroid being an option so that as many as possible can try it and find out if it is better for them.

It seems to me to be a disservice to all those who might improve with increased availability of desiccated thyroid to make statements about it which, at least according to official documentation, appears unfounded. It provides those who are against desiccated thyroid with ammunition.

Rod

Blake profile image
Blake in reply tohelvella

Hi Rod, ok, thanks for the reality check. I shouldn't be posting things I don't know enough about and especially not in a sarcastic manner. All I am doing is repeating something I read from one particular site and I can not verify it by the label. The woman that runs the site claims to have contacted the manufactures and obtained either the labels or the info from them in writing, then re-posted what she found.

So there's no real evidence, and you're right she even says that the amount isnt listed anyway.

Thanks for your time and sorry for over reacting...I think I have adrenal problems..haha

stopthethyroidmadness.com/a...

All the best

helvella profile image
helvellaAdministrator in reply toBlake

One thing I do understand is the difficulty we all have of sifting fact and fiction, of handling the welter of issues, of damn well suffering and trying our best to do what we can.

Because I have the "administrator" tag (and from my own cussed "I know better" character aspects), I do try very hard to ensure that when I think something isn't right, I put in a corrective post or two.

I certainly wish I really knew why desiccated thyroid worked so much better in some people. Maybe, with luck and a following wind, we would be able to achieve even better results if we understood?

The "all the Ts" or "T4, T3, T2, T1 and calcitonin" phrases are widely repeated. It is simply a shame that it might not be quite true.

Thank you

Rod

Blake profile image
Blake in reply tohelvella

Thanks, that makes sense. I know you give allot of good insight. What I think is, the T1 and T2 are there, I believe the author of the site did her due diligence. They are just in such small amounts that they're probably insignificant. That's why there's no blood tests for them and no established values.

The success people get from the stuff is probably due to the T4, T3 combo. I'm personally not one of the people that benefit much from it. I felt like hell on Synthroid and am now on a self induced NDT, T3 combo. But I never found a doctor that understood the whole HTP axis in the US, and my doctor here in the Philippines is a rodeo clown. I swear, I dont know if you have ever seen the Simpsons, but this guy is Dr Nick from the Simpsons. He gave out the same laugh and said he would remove my thyroid for cheap cause he is a surgeon too. Thats the answer here to an under active thyroid..haha

Thanks for the discussion

Clara8 profile image
Clara8 in reply toBlake

Hi Blake, Could you please let me know where I can get 1000 1 grain of high quality NDT for $67 use. I use Armour at the moment but after 3 months does not seem to work very well and still a lot of pain. I take 3 grains a day. Many thanks

Blake profile image
Blake in reply toClara8

Ok, Ill send you the link so you can keep trying the myth of NDT. Armour as you know isnt the best. But there's a few other reasons why it may not be working. Adrenal, iron, usually. Maybe you should check with Helvela, or Rod. He seems to have figured out the answer

Blake profile image
Blake in reply toBlake

"Why did I feel lousy on NDT?

If upon starting desiccated thyroid or raising it, you have very strange symptoms, including anxiety, insomnia, shakiness, we learned it was a strong sign that you may have either an adrenal problem or inadequate levels of iron, which are revealed with NDT. See this video. And here’s a page that covers why NDT doesn’t seem to work for you. Or, if you felt great when you started NDT, only to see it go away and hypo symptoms return, you probably failed to understand that you needed to raise it! See mistakes patients make." stopthethyroidmadness.com/n...

marmaris profile image
marmaris in reply toBlake

Hello Blake I would like that information please could you pm me.

in reply toBlake

Ooo - PM me too, please, Blake. Humphrey would like to compare too. Although I bought about a year's supply last time.

in reply toBlake

Actually, NDT has a lot more t3 in it than what a normal human thyroid would produce. Some people do not do as well as others on it. Some do better by adding a bit more t4 to it. Everyone is different.

ola94 profile image
ola94

I definitely think that you are taking the t3 meds too close together- try to space them out every 5h

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