Category: thyroid

Antibodies, part 3, TSHR abs, TRAb

September 24, 2021 / / 0 Comments

Many believe, that TRAb is an antibody only people with Graves have.  Many also call them Graves’ antibodies. And that high levels of TRAb is the same as hyper thyroid.  This is not the case. As there are 3 types of TRAb, stimulating, blocking and cleavage. People with hypo thyroid can also have high levels of TRAb, So this antibody is of interest to all with thyroid disease.

Abstract

There are 3 kinds of TRAb or TSHR abs, stimulating, blocking and cleavage; previously called neutral.

Both hypothyroid and hyper thyroid can have high levels of TRAb.

Some Graves’ patients have both blocking and stimulating TRAb. They will fluctuate between hyper thyroid and hypo thyroid.  

One believed earlier, that the third kind of TRAb one had found, was neutral. But now one has realized, this third TRAb can actually cause cell death in the thyroid. That is, it kills thyrocytes.

People with atophic Ord’s (athropic AITD) have much higher levels of TRAb than people with Hashimotos. We mistakenly call both atropic AITD and  AIDT that starts with a goiter, for Hashimotos. But these are two different diseases. You may not have been aware that you had a goiter, but the gland has been somewhat enlarged in true Hashimotos. And the gland keeps it’s size throughout the disease. But in Ord’s, the gland fades away, atrophies. This might be due in part  to these cleavage TRAb s.

When the gland is gone or mostly gone, there will not be high TRAb levels anymore. As all thyroid antibodies are made in the gland.

There is also a section on iodine supplementation and Graves.

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Antibodies, part 2, Anti-thyroglobulin

July 16, 2021 / / 0 Comments

Thyroid patients are very focused on anti-TPO, but anti-TG is also important. If we have high levels, it can mean, that there is some damage to our thyroid. And did you know that 10% of Hashimotos patients don’t even have anti-TPO, only anti-TG?

Abstact

Thyroglobulin is a large molecule. It’s involved in the manufacturing and storage of thyroid hormones. It’s supposed to stay primarily INSIDE the thyroid. But it’s normal to have tiny amounts floating around in the circul-ation. We can get anti bodies to the thyro-globulin when levels become high, anti-TG.  

Thyroglobulin can release into the circulation in various ways: 

When the thyroid is being destroyed.

When the thyroglobulin contains very little iodine.

When they suddenly contain much more iodine (when one has been iodine deficient and suddenly increase iodine intake by a lot). 

And lastly, in thyroid cancer, TG can get released in connection with the synthetization of hormone. 

We don’t know for sure whether high anti-TG levels are bad for us. But it does play a role in the auto immunity of AITD.

It’s important to test  anti-TG when one suspects AITD, because 10% have only elevated levels of anti-TG, and not anti-TPO. I don’t think many doctors are aware of that fact. 

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HOW IS NDT MADE?

October 7, 2020 / / 4 Comments

I have got to admit, I have been very ignorant about how NDT is made. I have believed that NDT and glandular supplements, like Metavive and Thyrogold, were virtually the same.  And I have been telling people that. They are not, glandular is a much weaker product. I could be embarrassed about this. But I choose not to.  This only proves my point, that there is so much to learn about this thyroid issue. Let’s try to stay openminded, and just admit when we are mistaken. That is the only way to learn something new.

I have this info from Chris at Pim Pom products, also the photos.  Most of it is a direct quote from him.  I have just added a little. Thanks, Chris!

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Quality of NDT

September 5, 2020 / / 0 Comments

There is so much talk of issues with NDT. And I have already written one post about it. I hope to be a sobering voice. I see a lot of stress and worry created, especially in the US. We take it more easy here in Europe. 

Is there any need for worry? No, you don’t need to worry. Only people who do not know anything about their optimal levels, or how to monitor them, need to worry. You will learn how to do these things, if you don’t already know it. I will teach you.  Follow your temperature and pulse, guide below. Then you just adjust your dose as needed. 

Because thyroid meds will continue to fluctuate also in  the future. And not only NDT, synthetic meds differ in their hormone levels as well. There is just now, August 2021, a new study on Levothyroxine. Where the authors think the medicine is so inconsistent, it should be put to bed. You can read more about that  here.  

USP standard for NDT

Synthetic T4 meds like Synthroid and Levo, are legally allowed to vary between 95 and 105 % of the given amount.  So your current batch can be 10 % stronger or weaker than your previous batch. NDT and synthetic T3 medicine is allowed to vary between 90 and 110 %, US pharmacopia.

Recall of NT and WP 2020 and NP Acella nov 2020

The recall of Nature Throid and Westhroid in 2020 was NDT that might contain 87 % of the given amount. That is 3 % less than what is allowed. OMG! In hormone content, that would be hardly anything. The same with the NP recall in November 2020. That was also a sub potency at 87%. 

The FDA asked RCL labs to recall 6 lots . They tested 10 lots and found 6 to be subpotent, and writes that “some may be subpotent at 87%”, link to FDA recall . And criticized RCL for lack of procedures. 

 But RCL labs recalled all 483 lots from all over the world. I said at the time, now Nature Throid will no longer be an affordable option. And we see now, that I was unfortunately right.  It’s us patients who will pay the price of course. That was a very bad judgement call on behalf of RCL labs. I am thinking, with all the negativity going around in the US, originating from the STTM, they are maybe nervous. Why not just go out and say, all of these lots may be a little sub potent, please check your levels and adjust dose? There is a real shortage of NDT raw material in the world, due to the African swine fever. Can we afford to destroy large amounts of NDT? The NDT  certainly becomes more and more expensive as a result.

NP Acella recall summer 2020

 

And last summer (2020), NP Acella recalled product due to what they called “super potency”, it could contain 115 % T3 of given amount. That is 5 % over the allowed amount. Super potent? It would make for 1 to 1,5 mcg more T3 pr 60 mg, which normally contains 9 mcg T3. Most people would hardly notice such an increase. NP Acella warns, this could be dangerous to pregnant women. BS, is all I can say. 

It becomes a big drama. I know people who took NT from the recalled lots. They noticed no difference. 

This is the world we live in, all thyroid meds vary in hormone content. I am not saying this is good, and that we should just accept it. But I don’t know how easy it is to rectify it. Not even for the synthetic meds. If you have a look at the study on Levo that I link to over, you see, that the authors highlight detoriation that takes place in Levo that the FDA tests cannot detect. And that make it inconsistent, and even reactive. Maybe this is why so many of us have serious side effects on Levo?

And I believe, making and testing NDT is even more difficult. And keep in mind, each liquid chromatography can cost 3000 US dollars. WE will be the ones paying for increased testing. You can read more about how NDT is made and tested here

But, of course, the manufactures must have quality procedures in place. No doubt about that. Both RCL labs and Acella need to do better. Both synthetic and organic thyroid meds need to be more consistent.

Do all pigs have the same thyroid levels?

No they don’t. They are like us humans. Their levels vary with age, gender and even breed. I don’t know how this reflects in the actual NDT powder. But we do know the different NDT brands vary in hormone content. 

These graphs are from this study by Petkov. 

Table 1. Age- and gender-related variations in blood thyroid hormones in HCS Shoumen

Shoumen is a big pig company in Bulgaria. There are even variations between breeds:

Table 2. Breed- and gender related variations in blood thyroid hormones in Duroc (DD), Landrace (DL) and Yourshire (DY) pigs; HCS Shoumen.

What are the consequenses of these recalls?

The consequences are very serious. Patients are becoming scared and worried. This fear goes directly to our adrenals, which are often weak already. Sites like STTM and their corresponding FB groups also stirs up a lot of anger and conspiration theories. Which creates even more turmoil in many people. I don’t think most patients go very deep into this themselves, really look at the numbers and think.  I hope my post will make you do that.

Our NDT will become more expencive. When so much product goes to waste, there is only one person who will pay for that, YOU. 

Patients will have to change meds, which is very scary to many. Last year, Nature Throid was not to be had.  It can become expencive to change meds. It could entail a visit to the doctor, having to apply for a new license, having to buy a  more expensive brand. Maybe even being without NDT for a period. Or maybe even switching back to synthetic for good, and doing less well.

STTM rages against the NDT producers. I am becoming more and more pissed at the FDA. I find it very irresponsible what they are doing. I see in US groups, people talking about Big Pharma in this situation. Don’t you see, you are palying into the hands of Big Pharma? NDT producers are not Big Pharma, synthetic T4 producers are Big Pharma. 

FDA, I hope you are scrutinizing synthetic thyroid meds as well. I suspect not.

What can WE do?

We can monitor our levels when starting on a new batch. If you follow your pulse and temperature, you will know when to adjust dose. And keep in mind, there are many other reasons for our levels fluctuating besides variations in our meds. 

 

How to take the temperature

Measure before getting up and again in the afternoon. Preferably with a glass thermometer. Measure rectally or vaginally. Should be 98,6 F or 37 C in the afternoon, a little lower in the morning. 

How to take the pulse

Pulse is more individual than temp. What I have done, it taking my pulse when my temp is 37 C and I feel good, and go by that. For me that is a pulse around 72 in the morning and 80 in the afternoon. A very low pulse is never good.

 

Let us take things down a notch. If it is possible to raise the quality of our NDT, I hope it will be done. But if it is difficult to avoid variations, talk to us, inform us, work with us. We all want the same thing, good and consistent  NDT 

FOR THE THYROID NEWBIE

July 3, 2020 / / 4 Comments

Basic guide for you who are new to thyroid issues

I wanted to make the guide I wish I had had. Way back when, more than 20 years ago. Knowledge that could have saved me a lot of suffering. Maybe I would have been more healthy today. 

So it is my hope, this info will help you. Of course, there is so much info today, compared to earlier. But maybe there is too much info for someone new to this. I hope I can make it,if not easy, then at least possible to understand.  

I don’t know how you are feeling at present. If you have just been diagnosed with hypothyroid, with autoimmune thyreoditis, have had your thyroid removed or maybe you are struggling to get a diagnosis. Maybe your doctor is dismissing you, but you feel sick and know something is wrong. 

What are NORMAL thyroid levels?

Let’s start with that, what’s normal. Because it is not a TSH between 0,5 and 4,5, I can tell you that.  I am not going into long explanations, I don’t believe that is what you need right now. But if you want more info on this, you can find it here.

 

Normal thyroid levels

TSH around 1,5

Free T4 a little under mid range

Free T3 around mid range

 

These are normal thyroid levels based on a study of 3800 people. But some might have a higher FT3 as well.  But I don’t think many have a FT3 much under midrange . If your FT3 is just a little lower than this, you could try to increase your conversion, that is T4 to T3. As long as your FT4 is not very low, there is a possibility that you are just lacking some important vitamins, and especially minerals. Even if FT4 is low, Iodine, selenium, zinc, iron and magnesium might increase the production. Iodine  is particularly important for the production. Selenium and Zinc for the conversion.

So have these minerals  tested. Iodine must be tested in a 24 hour urine test, or better, the Hakala Iodine loading test. A blood test is no good.

Iodine is very important. If your FT4 is under 11 pmol/L (0,7 ng/dl), you are for sure iodine deficient. Iodine deficiency is a major cause of Hashimotos. Please read my post Iodine for beginners . I believe most hypothyroid are iodine deficient. Goiter and nodules are iodine deficiency.

Vit D is also very important. Needs to be 70, better over 100.  Low vit D can gice a slightly elevated TSH, and a lot of symptoms.

What thyroid tests should I ask for?

 

If this does not help, or you know that you are hypo, and these measures will not avail. What tests should you ask for? What if the doctor will only do TSH, and he says, it’s normal?

As I wrote, a TSH over 1,5 is not normal. It might be a little higher if you are elderly. In Norway, it is adviced to always test Anti-tpo on suspicion of hypothyroid. But I am sure, many doctors don’t. In Denmark, only TSH is tested. I know this is the case many places in the world. But we have internet labs now, selling hometestkits. So get one of those if you have to.

Make sure to test early in the morning, must be before 9 AM. TSH falls, becomes lower, after that. So a TSH of 1 at 3 PM, would have been 3 or 4 at 8 AM. So, if you want the doctor to realize you are sick, this is vital.  And many doctors and nurses are not aware of this fact. They believe, it does not matter when in the day test is taken.


What to test for:

TSH, Free T4, Free T3

Anti-TPO, Anti-TG


What do all those abbreviations mean?

Yes, there are a lot of abbreviations flying around. Here are the main ones:

TSH, Thyroid-stimulating hormone. It’s only a signalling hormone. It does not affect our cells. The pituitary releases it to promt the thyroid to produce more T4 and T3 when blood levels of in particular FT4, but also FT3 are running too low.

T4, Total T4. When it says just T4, not a “F” in front, or” free”, it means it is total T4. That is T4 hormone that is bound, usually to TBG. It cannot work on the cells in this bound form. Most of our T4 is in this bound form.

Free T4, FT4. This is the T4 hormone that is not bound, it can be used directly. It will be converted to FT3.

Free T3, FT3 is the form of thyroid hormones that is actually used by the cells, the only active form. 

Thyroglobulin, Tg is a protein that T4 and T3 is bound to in the thyroid. It is only inside the thyroid. If it is found in the blood, it must have leaked out.

Anti-tpo,  Anti-thyroid peroxidase is an antibody to an enzyme inside the thyroid.

TRAb, TSH receptor antibodies.  There are 2 kinds, stimulating as seen with Graves, hyperthyroid, and blocking as seen with hypothyroid.

Anti-Tpo and Hashimotos

TPO molecule

Why is Anti-TPO important?

I don’t think you need to understand all about Anti-TPO at this stage. But it is very important to have it tested, as it shows whether or not you have Hashimotos, a form of auto immune thyreoiditis. And whether you have Hashimotos or hypo thyroid from other causes has a lot to say for prognosis as well as treatment. 

One can have some  Anti-TPO without having Hashimotos.   But if Anti-TPO levels are high, then it is Hashimotos for sure. And even if they are not very high, if TSH is slightly elevated and FT4 low, then it is also probably Hashimotos you have got. You can read more about Anti-TPO here

NB! App 10% of Hashimoto patients do NOT have elevated Anti-TPO. they have only elevated Anti-TG. It’s important to know this, and most doctors don’t. That is why it’s important to test for Anti-TG. You can read more here

That is the first thing that happens. The thyroid is struggling to make hormone, and FT4 becomes lower. The body manages to keep the FT3 level up for a while. But in time, that becomes low as well.

 

Getting medicine when FT4 is low and you have antibodies, is very important. Don’t live with low FT4 and FT3. We become damaged from a low FT3. Levothyroxine also brings the Anti-TPO down.

It’s very important to get Anti-tpo down.  Anti-TPO can over time contribute to the deterioration of your thyroid. Anti-TPO is not the main destroyer, contrary to what many believe. But it contributes.  And if you are at the beginning of your disease, getting the Anti-TPO down might even reverse the disease process.

You want to do everything you can to keep it intact. It’s very important that we have our thyroid. Even if it at some point doesn’t manage to produce that much hormone any longer, it contributes to the conversion of T4 to T3 in the body. And you become tired from high levels of antibodies, from the high activity in the immune system.

The main thing to getting Anti-TPO down is to stop eating gluten.  Many of us with auto immune thyroid disease (AITD) are gluten intolerant. Several studies show that not eating gluten brings Anti-TPO levels down. Sugar is also not good. I personally have no problem letting be gluten. Sugar is another matter. Even though I can feel, it’s not good for me. If I eat gluten, I get tired very fast, with an aching pain between the shoulder blades. There are many other symptoms you can get as well.

To have one’s selenium tested, and supplement if too low, is also very important. Selenium can get Anti-TPO down and it protects the gland. Some Norwegian doctors now say, the range for selenium is way to low. It should go all the way up to 3 ng/dl. Toxic levels are at 3,5 and over. 

This stuff about Anti-TPO is one of the things I really wish I had known from the start. Plus optimal levels. Plus iodine deficiency. I went to an expensive, functional clinic in Oslo a few years into my disease. I had food intolerance tests, which showed that I could not tolerate wheat, rye or barley. The doctor then said, you can try eating spelt instead! What a mistake! If you cannot tolerate these other gluten containing cereals, you will not be able to tolerate spelt either.

What if I don't have a thyroid?

If you have had your whole or parts of your thyroid removed, then it is very important that you are not being underdosed from the get go. It’s a big deal, having our body’s power station removed. And if there has been cancer or suspicion of cancer, even more so.

So the last thing you need, is being left with too low thyroid levels.  In Norway, they often start people  who have had a thyoidectomy on 150 mcg. A common dose for people without a thyroid is 175 mcg T4 medicine. But in Denmark I often see people get as little as 100 mcg. And becoming very sick and under dosed. 

If you have had only part of your thyroid removed, I believe they often wait a bit and see, how things turn out. Just keep an eye on it yourself. Look at your blood tests, and don’t live too long with low levels. I would think it would be better to give some medicine, and rather decrease dose if one becomes hyper. 

It is important to know, that all thyroid antibodies are produced INSIDE the thyroid. So if we have no thyroid, or only a little left, antibody levels will come way down. 

 

Is T4 medicine enough when I don't have a thyroid?

 

For some, T4 is enough. At least for a while. But many without a thyroid will need T3. Keep an eye on your levels. The thyroid produces both T4 and T3. How much T3 is individual. Many believe it produces 20% of the daily need for T3. But a study has shown, that it actually varies a lot, between 10 to 40%. so you can see, some will not be able to do without T3 medicine at all. The thyroid itself also helps with the conversion T4 into T3 in other parts of the body.

 

How do I know that my dose is correct?

You know because you have learnt where your levels should be. You ask for a copy of all your thyroid tests. And save them. You want the option to be able to go back in time. You are not leaving your health and your life in the hands of the doctors. We cannot do that, sadly. They are not competent enough.  

And you take your temperature. That is the best test. In the daytime, it should be 37 C /98,6 F. Under, and your thyroid levels are too low. 

Where should my thyroid levels lie when I take medicine?

Optimal levels on T4 medicine

TSH not over 1

Free T4 in upper third of range

Free T3 around mid range


I am talking about T4 medicine here. In Scandinavis one would never get anything but T4 medicine as a first medicine. And I think it is correct starting there. If it works, it’s so much easier and cheaper than anything else. But if you are starting out on NDT, you can see what’s optimal on that here

If TSH is over 1,5 on T4 meds, you are for sure under dosed. It’s best when it is not over 1. Some need an even lower TSH than 0,5.

Do I need T3 medication?

If your FT4 is high in reference, but your FT3 is under mid range. Then you need some T3. You can see how badly or good you convert by dividing the FT3 number with FT4. If FT4 is 19 pmol/L(1,47 ng/dl) and FT3 is 5pmol/L (3,2 pg/ml), then your FT3/FT4 ratio is 0,26. That is an ok converter. But if your number is 0,24 or below, you are a poor converter. And you will probably need some T3, either synthetic T3 medicine or NDT (thyroid). 

But by now you have been sick for a while, and you will be able to figure things out. And you can read about it here, Optimal thyroid levels

Thyroid Medications

 

Levothyroxine and Synthroid, these are the most common, and cheapest T4 mediations. Some get side effects from them. Aches and pains, tiredness.

 Tirosint is another T4 medicine. It has only 2 fillers, and many do better on it than on the other two.

Cytomel and Liothyronin, Lio are both synthetic T3 . 

NDT, Natural Desiccated Thyroid.  It’s freeze dried thyroid from either pigs or cattle, porcine or bovine.

Being chronically sick

It’s quite difficult, realizing you have a chronic disease. You don’t just shrug it off and move on. There are many phases. Anger, despair, fear. Lots of emotions. 

If you allow yourself to feel what you feel, I believe that is a good thing. It took me many years to get to where I am today. Where I accept that I am not a 100%, but I am still happy and thankful for life. At least sometimes. 

I have some tips here, Living with disease

REVERSE T3

June 13, 2020 / / 2 Comments

Abstract

Reverse T3 is not the big bad wolf in our thyroid system. It is a necessary brake where FT3 is the gas pedal. We can get too much RT3 when we take more T4 medicine than we are able to convert to T3. Could be just too high dose, or that we don’t convert well. Other conditions can increase RT3 too much as well. It’s a good idea to test RT3 from time to time. But it is not necessary to test all the time. 

I will look at myths and misunderstandings around RT3. for one thing, RT3 does not block T3 by occupying T3 receptors. Nor does it hinder T4 to T3 conversion. If there is a big bad wolf, it’s deiodinase 3, D3. It’s D3 who converts T4 to RT3, and who hinders T3 from attaching to the T3 receptors i the cell nucleus. 

But there are no “wolves” in our thyroid system. Only participants with their own roles to play. And the better we understand the play, the more can we hopefully optimize our thyroid levels and feel better. 

I will look at what causes too high RT3, and what one can do bring it down. 

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HAS NDT GONE BAD?

May 24, 2020 / / 2 Comments

NO, NDT hasn’t gone bad. That is the short answer. I take NDT myself, and it works just fine.

I see people claiming, NDT is no good anymore. That it is better to take synthetic T4/T3 now. I think this is very serious, that this incorrect, untrue info is being spread in the Facebook groups. It stems from STTM, Stop the Thyroid Madness, and its Facebook group, Adrenal Fatigue and Thyroid Care. STTM is a site that has contributed so much, and I am sad to see, there is such black and white thinking going on. This issue isn’t black and white.

I wrote to the woman behind STTM about this, Janie A. Bowthrope. I told her, we are lots of people who do great on NDT here in Scandinavia. She said, most of those who still “believe”  they are ok on NDT, only experiences adrenalin! I find that to be a strange claim. What does it mean? Adrenalin? We don’t have good thyroid levels? We just think we do? A female admin in the Facebook group, told me in a comment, we here in Scandinavia probably took our meds right before labs! None of us know how to do our labs? I am a member of thyroid groups  in many countries. The members in the Norwegian groups are among the better informed in the world, as far as I am concerned. I am aware that many thyroid patients don’t know how to do labs correctly. Norwegians on NDT are not among those.

It’s a little difficult to take this seriously. Yes, absolutly, there were some bad batches of Nature Troid in 18. It didn’t take long before there were good batches again. STTM claims, that NP Acella is bad now. We don’t have NP here in Scandinavia, I don’t know if they have it in other European countries. But I see lots of people saying it is fine for them in the US groups. We use a lot of Armour, Erfa and nature Throid over here. Just now, May 2020, I see people here in Scandinavia saying, there is something wrong with Erfa. With the smelly product Erfa themselves have made a statement about it. Erfa says, they contain the proper amount of hormone. But some experience it differently.  

Update: I wrote this last year. I have just checked back with people on NP now in August 2021. They are doing fine on it still. Despite STTM claiming, it does not work at all. So maybe it works for some, and not for others. Keep in mind as well, we fluctuate a lot in our levels. We use a lot of Armour, Erfa and Na

I am not saying, there are no issues. But to say, all NDT has gone bad, and to accuse the producers of being callous and indifferent to us patients and only out to make money, as Janie Bowthrope does here, https://stopthethyroidmadness.com/2019/09/23/the-sad-saga-of-where-we-are-today-as-hypothyroid-patients/  That is a sad saga.

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SYNTHETIC T4 TO NDT CONVERSION

May 19, 2020 / / 0 Comments

How do I convert my T4 dose to NDT?

This is a question one sees often in the thyroid Facebook groups. There is a lot of confusion and insecurity around this. Which is not so strange, as there is very little good info on the topic. Here are my recommendations

The conversion tables the NDT (thyroid) producers themselves provide are ridiculously low. They are wrong, wrong, wrong. I don’t understand how they think at all. If they do. Think. One would be seriously under dosed if adhering to those guidelines. And if one’s doctor reads them, one could get serious problems. I don’t know how many doctors read these instructions. I hope they don’t. Here is a table from Nature Troid as a (bad) example.  

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TRIAC

April 22, 2020 / / 0 Comments

This is just a short abstract of Thyroid Patients Canada’s article on Triac, https://thyroidpatients.ca/2020/01/02/when-dosing-t3-you-get-higher-levels-of-triac/ . I just want to draw your attention to this metabolite. The quistionmark on the image, is meant to signify my surprice when learning of Triac. I had never heard of this thyroidhormone metabolite until I read Tania’s post. It is quite strange, as it has been studied since the 1950ies. I don’t think many of our doctors have ever heard of it.

So what is it? It is a thyroidhormone metabolite like FT4 and FT3 are. It acts much as FT3, it’s abbreveration is TA3. It has a much shorter halflife than FT3, about 6 times faster.

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