T3 advice: Hi all I have now been issued with T... - Thyroid UK

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T3 advice

dodge1979
dodge1979
45 Replies

Hi all

I have now been issued with T3 on the nhs

Endo has mentioned bone and heart problems from taking it

Can anyone elaborate?

Thanks in advance

45 Replies
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SeasideSusie
SeasideSusieAdministrator

According to your previous post you were prescribed T3 in May. When did this issue of bone and heart problems be mooted? Before or after you started T3?

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dodge1979

Hi

This can up when the endo wanted to pass to the GP to Prescribe going forward

Gp won’t due to safety and the bone and heart

I have no other conditions

Than this

P

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SeasideSusie
SeasideSusieAdministrator
in reply to dodge1979

You said:

"Endo has mentioned bone and heart problems from taking it"

and you're now saying:

"Gp won’t (prescribe) due to safety and the bone and heart"

so who is it?

If it is your GP then I would have thought, as you are under the care of an endo and he initiated the T3, then the endo, as the specialist, trumps the GP. If your GP has concerns then he should be discussing them with the endo. In your position, if your GP is refusing to prescribe the T3 that your endo wants you to be taking, then I would be contacting the endo reporting that your GP wont follow his directive and will he please sort it out.

At the end of the day, if it's your choice to take it, you have to make the decision as to whether you wish to take the risk - or is there a risk because there is conflicting evidence.

Reading posts on here you will see plenty of evidence of members taking T3, having a suppressed TSH, and they don't have bone and heart problems. I'm sure I've seen links to studies posted on the forum saying it's not suppressed TSH but over range FT3 that is the problem but I don't have a note of these. I have been diagnosed/treated for 45 years, I've been keeping a record of my results for 25 years and during those 25 years my TSH has been suppressed on all but about 3 occasions and that was when I was on Levo only with high FT4 (because I didn't convert well enough, had doctors who didn't have a clue and only found out myself in recent years). I now take T3 in addition to my Levo, my FT4 and FT3 are in range and my TSH is still suppressed. My suppressed TSH over all these years hasn't caused bone or heart problems and my GP knows of my suppressed TSH and has not investigated these possible problems.

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Lalatoot

Tsh is the hormone that comes from the pituitary to signal to the thyroid to produce its hormones. How therefore could it effect bones and heart? T3 is the active hormone that all our cells need. Surely Ft3 is a more important level. This is my opinion. I am not medically qualified.

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Jodypody

Honestly? They’re following protocol the risk is higher if you don’t take medication but they are bulldozed into this. Grab this chance as getting T3 on NHS is a battle. If you want to help yourself and offset any potential issues start at grass roots level and eat well and I mean nutrient rich foods and do some weight bearing exercise even if it’s yoga

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Hashihouseman

It’s simple ....make sure you don’t suppress your TSH (aim for about 1.0) and keep your free T3 levels between 4 and 5. The aim of the game is to replicate what your normal healthy thyroid system would have operated. Although you may never know what that exactly was before illness you can in the first instance aim for your peer group normal values, this is not simply anywhere in the laboratory ranges! Well, it is somewhere in the range but that somewhere will be very specific to you in other words not just any old place within the lab ranges.

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SlowDragon
SlowDragonAdministrator
in reply to Hashihouseman

But many/most patients on any dose of T3 have suppressed TSH

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Hashihouseman

That’s absolutely not my experience. And I would dare to say that apart from a very small minority, if TSH is being suppressed then you are taking too much T3. In my experience T4 will suppress my TSH just as much if not more than T3. That is over the range of appropriate doses; supranormal doses of T3 will almost certainly profoundly suppress TSH.

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Hidden
Hidden
in reply to Hashihouseman

It would be interesting to know what you base that statement on, since people write here daily about having a suppressed TSH on NDT or T3? How do you know it's only a "small minority" that end up with a suppressed TSH?

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Hashihouseman
Hashihouseman
in reply to Hidden

I don’t know that and I didn’t claim to know that what I was suggesting was that only a small minority actually clinically need to have suppressed TSH for the rest it may be an overshoot.

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Hashihouseman

Not only that, trying to glean what may be statistically significant from the number of posts on the website like this is very difficult without thorough analysis. millions of people around the world take thyroid replacement so whenever we claim that any proportion of those people of this that or the other we should do so very carefully and on the basis of statistically appropriate evidence.

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Hidden
Hidden
in reply to Hashihouseman

Well, that is exactly what you are NOT doing by referring to a ‘very small

minority’...!

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Hashihouseman
Hashihouseman
in reply to Hidden

I’m referring to the very small minority in relation to the total number of people on replacement thyroid hormone who have a clinical need for suppressed TSH. Moreover, I did not suggest that TSH was more important than T3, however in order to have the best shot at finding our optimum homoeostatic replacement therapy Levels we need to know the relationship between TSH free T3 and free T4. If there is a significant disjoint that goes against all clinical parameters between TSH and either or both of the three hormones and further investigations would be a sensible consideration. given that TSH is the bodies fundamental feedback loop hormone involved in regulating thyroid metabolism it seems likely to also be significantly useful as an indicator of the appropriateness of replacement hormone therapy. not only that, normal levels of TSH may well be an optimum condition for thyroid health in terms of the feedback loops and hypothalmic pituitary functionality. One of the reasons the medical establishment is so averse to prescribing T3 is because it is all too easy to overdose on it, suppress TSH and potentially impact healthy cardiovascular function. If people who wanted to take T3 could prove to their endocrinologist that they were managing their thyroid hormone levels, including TSH, within Normality then I suspect they would have a much better case for an NHS prescription.

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Hidden
Hidden
in reply to Hashihouseman

I disagree.

What you are basically saying is that taking T3 and having a suppressed TSH equals being overmedicated so drug-induced hyperthyroidism. Even if that is what most doctors believe, that does NOT mean it's true.

People write here every day about their battle with doctors who want them off T3 or NDT when they finally feel well, just because their TSH is suppressed - often without even checking their free T3 levels and without the patient having symptoms of being overmedicated.

I'm sorry, but what you are saying is contradictory. As far as I know, the only people who have a clinical need to have a suppressed TSH are those who have had thyroid cancer. In other patients, it's merely a consequence of taking T3 as that tends to suppress the TSH very easily. But I fail to see the connection between someone feeling well and symptom-free on NDT or T3 with high-normal FT3 levels and a suppressed TSH on the one hand, and someone with out-of-range FT3 levels and hyperthyroid symptoms on the other.

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Hashihouseman
Hashihouseman
in reply to Hidden

I did not make any such connection. I’m merely saying that for many people it may be the case that allowing TSH to operate at normal levels while feeling okay and having free t3 & t4 near normal is better than pushing tsh down to suppressed levels (ie below 0.1) Not only do I base this on widespread reading of research and medical texts et cetera but on my own personal experience with years of frequent blood testing and periods at various levels of TSH including suppressed normal and high.

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LAHs
LAHs
in reply to Hashihouseman

I think it's 1.0 not 0.1 (mIUA - don't forget your units folks)

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silverfox7

Forget what you have read or whatever and think logically. FT4 converts into FT3 so in theory that sounds find but for many of us, even after optimising vits and minerals it doesn’t happen. So look back and what we were told from the start. The TSH is a messenger from the pituitary telling our thyroid it needs more thyroxine and the higher the figure the louder it is shouting. But if without the T3 being high enough we can’t function properly then artificially the T3 has to be higher. So we artificially get this increase through more T3 medication so the TSH has no need to be deliver any more messages so it can still down and put its feet up as it hasn’t got anymore to do but keep itself ready to step in as necessary. So the TSH figure is so low because it’s in sleep mode 0.01 ish. Ok very simplistic but often so described so we can understand what is happening. T3 only becomes an issue if the reading is too high.

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Hashihouseman

TSH does not only signal the thyroid gland. Simplistically put The Pituitary is designed for steady-state operation at around 1.0 And is a product of millions of years of evolution of a highly sensitive biological feedback loop and given that most of the healthy people without any thyroid pathology operate nearer to 1.0 than anything else then its value as a predictive indicator is hugely significant. There may be individuals whose pituitary response is blunted or there is some other unique homoeostatic position that requires so much replacement thyroid hormone that TSH is inevitably suppressed. Everybody is bandying around their own personal opinions without any reference to clinical data and I am merely offering my hypothesis based on first principles and my direct experience

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Angel_of_the_North

How do you know that any particular person has a healthy, textbook-functioning pituitary gland and hypothalamus? I suspect that in many sick people there are more problems than "just" the thyroid. As soon as you start giving hormones (of any sort), it is likely that you break the feedback loop (if it wasn't already broken) as even taking pills 3-5 times a day is not the same as a healthy system producing hormones in a natural way.

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Hidden
Hidden
in reply to Hashihouseman

I don’t think that is a claim you should be making. That may be your opinion, but it’s not a fact. Are you really suggesting the TSH is more important than FT3 levels and symptom-relief?

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Hillwoman

An illuminating discussion of TSH that should interest you:

thyroidpatients.ca/2019/09/...

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Hashihouseman

Yes I’m aware of all of that and the bottom line is that TSH alone should not be relied upon as a predictor or diagnostic conclusion about anybody thyroid status. However in conjunction with free T4 and free T3 levels you get three points on which to evaluate your position. I know from first-hand experience that my TSH levels are directly affected by my free T4 and free T3 with strong statistical significance and that seemingly acceptable free T4 or free T3 levels but alongside symptoms of feeling unwell are explained by a drifting TSH. My TSH levels tells me valuable information about the adequacy of my prevailing free T3 and free T4 levels. All three of these indicators are necessary, so to dispense with TSH because once its oppressed it is of no indicative value is the thing that I cannot find strong clinical or research evidence to justify. Except as I have already acknowledged in the cases of particular clinical need for a suppressed TSH. For me the goal of replacement therapy is to find the most stable relationship between those three hormone indicators at whatever level is stable for me! This is not some academic exercise this is a combination of detailed symptom diary and frequent blood tests and accurate recordkeeping of replacement doses over years!

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Hillwoman

Gosh, sorry to have burdened you with some information.

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Hashihouseman

There is no need to be snide or sarcastic I didn’t say it was a burden I merely said I was aware of it. Unlike other people on here I believe a frank and open debate is a good thing. When people read things that challenge their own beliefs or even their own experience they should not take it personally but offer the reasons why they believe what they believe. That was all I was doing.

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Hidden
Hidden
in reply to Hashihouseman

This makes sense to me.... I don’t really get this concept of the pituitary being switched off that was suggested to you... but it seems a popular idea on here. I suppose people who don’t see things the same way will be less likely to post and that’s what enforces the consensus being as it is.

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silverfox7
silverfox7
in reply to Hidden

I don’t look at it as ‘switched off’ but if the T3 is high enough then the pituitary has no need to be asking for more

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Angel_of_the_North

My TSH rises when my free T4 rises, even if free T3 stays the same. It's not supposed to do that, is it? But it does. So one individuals stats may not be applicable to another individual.

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kissemiss
kissemiss
in reply to Hillwoman

Thank you so much for sharing this informative site. The Canadian video on why t3 needs to be in at the upper level but still within the range was specially brilliant.

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lola1956

Not true most people on T3 have suppressed TSH, it’s criminal what they say to us to stop us asking for it ?

I’ve been on T3 many years now with no problems

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Hidden
Hidden
in reply to lola1956

Having problems with T3 and having a suppressed TSH are not synonyms. They should not be confused.

My impression, after years of visiting forums such as this one, is that many people on optimal doses of T3 (be it synthetic or NDT) have a below range or suppressed TSH without any symptoms of being overmedicated.

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Carna
Carna
in reply to Hidden

Certainly has been in my case. My GP thinks my TSH is suppressed and spoke of bone problems because of it. I asked my private endo who said she was NOT concerned that my level was so low since starting on T3 and that the study my GP was referring to was not conclusive and related to mainly the elderly who already had potential bone problems. How do I feel since starting T3? Like I have got my life back after years of misery, failing to get GP to understand I wasn't well at all solely on Levo and nothing will make me stop taking T3!!!

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lola1956
lola1956
in reply to Carna

Well said this is exactly how feel , we must take care of our own body as where the thyroid is concerned GP s in the UK have only one solution and that’s Levothyroxine, even when it’s not what your body is crying out for ... do your research and always start off slowly plus have bloods done On a regular basis that’s my advice

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Clara62

Interesting post. Following.

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penny

That old chestnut again.

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Poniesrfun

Effects of Long-Term Combination LT4 and LT3 Therapy for Improving Hypothyroidism and Overall Quality of Life.

ncbi.nlm.nih.gov/pmc/articl...

Previously, monotherapy with LT4 (levothyroxine) has been recommended based on short term studies. This study was different.

"Our first observational study examined the role of combination therapy for 6 years in improving quality of life in a subset of a hypothyroid population without adverse effects and cardiac mortality."

Importantly, they documented not only thyroid-stimulating hormone (TSH) but they also looked at serum thyroxine (FT4), and serum triiodothyronine (FT3) levels. Fewer than 5% had above range FT3 levels and none were hospitalized for arrhythmias or thyrotoxicosis.

This is a study worthy of a full read and a print out to share with your care provider, especially if they are reluctant to provide adequate testing of FT4 and FT3 which are recognized by most researchers as important biological markers in thyroid therapy.

Patti in AZ

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vocalEK
vocalEK
in reply to Poniesrfun

I noted that the % TSH below range was 22.5 in that study. So perhaps on this forum we see more than 22.5% of folks who take LT3 or NDT reporting suppressed TSH, but nevertheless, the percentage of 22.5% is large enough to point out to doctors that they need not be surprised if their patient's TSH drops below the range on some type of T3 therapy.

Before being prescribed T3, I was on 175 mcg of Levothyroxine. My FT3 was below range at 1.9 pg/mL (2.0 - 4.4). My TSH was 1.79 uIU/mL (0.3 - 4.2) and my FT4 was 1.5 ng/mL (0.60 - 1.70). Seven months earlier on the same dosage of Levo, my FT4 was 1.7 (100% through range) and TSH was 0.626. FT3 had not yet been tested.

After titrating up to a full 25 mcg of Cytomel, my FT4 was still 1.5 (81% through range), and FT3 was nicely up to 4.2 (91.67% through range).

Unfortunately for me, I am apparently in that 22.5% that suffer a suppressed level of TSH on T3 medication. My TSH had fallen to 0.01 uIU/mL after 3-1/2 months on T3. Nevertheless, I felt great. Not so much, my GP. Having read all the BS about low TSH causing this and that, she was in a panic. I pointed out that my recent DEXA scan showed zero bone loss -- all the numbers were positive rather than the expected negative numbers for my age -- and that my cholesterol numbers were excellent. I also pointed out that there was improvement in several of the hypo symptoms that I listed for her when I asked for a trial of T3. Nevertheless, she wanted me to stop taking Cytomel.

Instead, I suggested reducing the dosage of Cytomel to 17.5 mcg, after which my FT4 stayed at 1.5 (81% through range), and FT3 dropped to 2.6 (25% through range.) TSH came up, but only to 0.02. Again, she wanted me to stop Cytomel (And how the heck is my body supposed to get any T3???).

I suggested instead, dropping my Levo prescription to 150 mcg. I figured that I was in good shape as far as FT4 was concerned and hopefully my TSH would rise enough with this change in medication for my doctor to chill out. Furthermore, FT3 might go up, since too much T4 can interfere with the body's process of removing an iodine atom from the T4 molecule to create T3. Fingers crossed. I plan to go in for retesting next week.

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R2d2c3po

Well done on getting T3 on NHS.

I suppliment my T4 with T3 to get my blood levels of T4 and T3 to the healthy levels. This suppressed my TSH to near zero, so so am also concerned about the affect on my bones which my GP has said might be an issue going forward. I have tried to research this online.

As well as maintaining your metabolism thyroid hormones are also involved in the bone cycle, the production and reabsorption of bone tissue. A suppressed TSH could mean a disruption to this cycle causing more reabsorption Lessing to increased risk of osteoporosis. Looking through articles there is no conclusive evidence of this as it is difficult to isolate the affect of TSH in isolation from T4 and T3 which are also involved in the bone cycle.

I am remaining on T3 as it makes me feel well but my GP will monitor and at some stage I will have a bone density scan. I am on HRT anyway . By patch not pill as taking in pill form it reduces the affect of T4 something else I had to find out about by my own research!!

As far as atrial fibrillation risk, I think this is only related to being hyper and too high levels T3. If TSH is the only thing being measured then a suppressed TSH would indicate elevated T3 and hence the risk to the heart but if your T3 level is normal I don’t think there is a risk. I am not a medical expert however!

Would be interested if anyone else has researched TSH and bone density

Hope this helps

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endomad

My husbands friend is a cardiologist and said my years of poor treatment put more strain on my heart than a lifetime of T3. I wear a smart watch so I monitor my heart rate and blood pressure through the day. It's true liquorice puts blood pressure up, I love the stuff but had to give it up.

Regarding bone health, exercise is best thing for bone density and without T3 I can't get off the sofa. Quality of life is more important to me than 'what ifs'

I take 75mcg daily my endo asked me to have last week's blood test 5 hours after taking it just to see how high it peaks at. It was at 10 which is well over but of course it drops off very quickly. If I leave 24 hours before blood test it is usually 1.2. As my endo said the high score is what is sloshing around in my blood after T3 not representative of what is absorbed on a cellular level. We should go by how we feel.

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DippyDame

Who ever wrote the above statement is seriously devoid of any knowledge of thyroid disease beyond the basic text book stuff of undergrad. lectures!

Any GP who thinks, as you said in an earlier post that "T3 IS A FOOD SUPPLEMENT AND I CAN BUY IT OVER THE COUNTER" isn't worth listening to.

You have been asked to provide reference ranges for your lab results.....it would be helpful if you did so!

In a previous post you said "my endo has said I have something called Peripheral thyroid hormone resistance"

On what did he base his conclusion?

What treatment did he advise?

Was he grasping at straws?

I have Thyroid Hormone Resistance and take a supraphysiological dose of T3....my bones and heart are fine.

You have already been given a lot of good advice but

my initial reaction, given what you tell us, is that you possibly need more T3.

Do you know if you adequately convert T4 to T3?

Labs will help find that answer ie. high FT4 and low FT3 suggests poor conversion.

How do you feel?

Your entire thyroid journey makes little sense to me but I'm not a medic just another thyroid patient who has had to use personal research and amazing advice from fellow members here to eventually uncover the cause of decades of ill health ....before self medicating.

Neither my GP nor my endo had the answer!

I found that here!

I suggest you go back to your diagnostic test, post those results here (and any others you have) with ref ranges and then we can perhaps get a clearer idea of what the problem is and how it started.

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serenfach

When the medical profession come up with stuff like this, I always ask (with big wide eyes) "what hormone does the body naturally produce that it does not need?"

They usually look thoughtful for a minute, which is difficult for them, and then realise what I am getting at. The body does not produce any hormone it does not need, and as mine does not produce the natural thyroid hormones, please can I have some to replace mine.

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lola1956
lola1956
in reply to serenfach

Fabulous reply to any doctor ,well done !

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LAHs

I have been on NDT for about 5 years - it has T3 in it unlike Levo alone. My TSH has been suppressed for 14 years (like .002mIUA). I have no bone problems whatever, I have noticed, however, that when I experimented with extra T3 that my blood pressure (BP) went up. I immediately dropped back to my dose that worked pretty well. I think that is the phenomenon that docs are referring to when they say you can have heart problems with T3. So the solution is:

1) Measure your BP, as a baseline (i.e. before you start taking extra T3) .

2) Take your T3,

3) Measure your BP again.

If your BP rises drop back to your previous dose regardless of how you feel.

If your BP did not react and you feel like you need more T3 then repeat until you feel well or your BP reacts, ( in which case you drop back to the previous dose)

So yes, if you just merrily keep increasing your T3 or you start at too high a dose and stay on it your BP could rise and stay there until you or your doc measures it and you could run into a BIG problem - the one your doc speaks of.

So, the answer is simple, keep measuring stuff. "Measure the Hell out of it" as we used to say in the lab and you will completely understand what is going on.

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Gcart

My endo wanted Dexa scan . Taking T3 is putting my bone health as risk.

I am immensely pleased to say my bone health is better than average for my age , reported on results 😁 Also, I feel well after years of problems with ill health.

Oh and yes my TSHis suppressed .

Oh, how about the heart attack ? Well I have suffered NO fast rhythms since T3 .They used to floor me , literally.

No one will change my opinion. I rest my case Dr Endo

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jgelliss
jgelliss
in reply to Gcart

Agreed . Many Dr's/Endo don't understand the physio logic's of adding T3 for thyroid patients who are on already some Levo meds . The patients loss out tragically . Medical Academia ought to educate Dr's as to how important and valuable T3/NDT is for thyroid patients is . It should be natural treatment to give T3/NDT to patients . Patients ought not need to beg cry and plead to feel well with some T3/NDT added .

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jgelliss

Is your Dr dosing you with TSH only ? That's what it sounds like to me . TSH is not a thyroid marker . It's a pituitary marker . Anyone taking any form of T3/NDT will have a suppressed TSH. The most important markers are FT3 FT4 . Both T3 and T4 are very important for our *Optimal* well-being .

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