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649848 tn?1534633700

The Merits Relying on TSH - or Not When Dealing with Hypothyroidism

Rather than take so many discussions away from poster's individual concerns to discuss the pros and cons of so many testing/treatment techniques, this thread is to discuss the merits of testing and adjusting TSH to certain levels.  

We all know that when we go to the doctor to have our thyroid tests, the very first thing the doctor is going to test is TSH.  The doctor may, or may not, test Free T4, Free T3, Total T4 and Total T3.  

Because AACE and ATA have listed in their guidelines that TSH is the most reliable test for diagnosing a thyroid condition and for adjusting medications, many doctors are only willing to test TSH; we know this ends up leaving many patients ill, in the long run.   Some doctors are still ordering Total T4 and Total T3, Free T4 index (FTI) and TSH w/Reflex to T4, T3 Uptake, etc, all of which are obsolete when it comes to diagnosing hypothyroidism.

We often see posts that say "my TSH is ...", but we don't see results for Free T3 and/or Free T4.  We also see comments saying that TSH needs to be between certain levels, with little to no concern for Free T3/Free T4 levels or most important, the symptoms.  

Most of us know that, in a perfect world, TSH is a pituitary hormone and its purpose is to stimulate the thyroid to produce thyroid hormones.  In that perfect world, the thyroid responds by producing the necessary hormones, which then decreases the TSH.  When the thyroid malfunctions, for any number of reasons, it no longer pays attention to the pituitary gland, which continues to crank out TSH, as thyroid hormone levels go lower and lower and we become more and more hypo.

In this case, TSH is useful in the initial diagnosis, because, typically, TSH will be high, while thyroid hormones (Free T4 and Free T3) will be low, indicating hypothyroidism.  This is about as far as TSH is really useful.  Once a person is started on thyroid hormone medication, TSH, often becomes irrelevant.  It's often too variable because it's affected by other things and can actually vary by as much as 75% over the course of a day...

TSH is also useful in diagnosing Central hypothyroidism, which is a problem in the hypothalamus/pituitary axis in which the pituitary gland does not produce enough TSH to stimulate the thyroid.  In the case of Central (Secondary) hypothyroidism, both TSH and FT3/FT4 will be low.

What are your thoughts about the use of TSH for diagnosing thyroid conditions and using TSH for determining and adjusting medication dosages?
22 Responses
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Avatar universal
Thank you, will ask about them regarding low T3 syndrome in India and what treatment options available for such people.
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16428684 tn?1460085084
Here is another idea for you....The Indian Journal of Endocrinology and Metabolism can be found online:
http://www.ijem.in/

You maybe able to find a doctor(s) near you that engage in thyroid research and are up-to-date on developments in thyroid treatment (i.e. T3 meds).  You might then try to see one of these docs, or have a consultation by phone or online.

Good Luck!
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Avatar universal
Only T4 is manufactured in India at very less rates exa: 1 levothyroxine tablet cost only 2 cents. T3 also some manufactures make but not easy to get for general public and local medical shops not have any idea regarding it. They are used for body building and other purposes. They actually make for exporting to other countries at high cost.

There are many doctor based forums for India but as I said doctors not discuss regarding low T3 as members here doing. Their approach is give levothyoxine and to make TSH come under reference range and let Free T4 and Free T3 adjust in some way their own and not think about it. Also these doctors are not approachable, get get angry if patients tell their concern regarding the treatment, its more like a radio or TV, just watch and no interact.
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649848 tn?1534633700
COMMUNITY LEADER
I agree with gimel....since you're here on the forum with us and gimel has provided much good information, why not take it to your doctor (or many doctors) and try to teach about the need for testing Free T3 and Free T4, as well as the need for T3 therapy?  
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Avatar universal
I overlooked what you said about T3 being manufactured in India.  So why is it so costly?  And why is it so hard for people to get?
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Avatar universal
Are there any hypothyroid patient advocate sites in India, similar to this Forum?  If not, seems like there should be, even if it was a simple approach that only directed people to other existing sites like this one, that have been in existence a long time and have adequate financial backing to be able to continue.   That would help spread the information that could be used to push doctors to try to get desiccated type meds available at reasonable prices.  

Do people there have any type of health insurance or does everyone have to pay their doctors for treatment?
Helpful - 0
Avatar universal
T4 is manufactured within India, anything imported from outside cost almost double or triple of original price mainly due to custom and shipping fee. This is applicable to all goods imported. For comparison one can look at health supplements products on amazon.com and same on amazon.in. Almost triple prices sellers charging.

To make desiccated medicines ones cost effective Thailand based products are best. Hope some pharmaceutical company import those in mass and sell in India as standard prescription drugs. Since its a prescription drug individuals can't import and sell on shops or e-commerce sites due to various restrictions. Doctors in India should take this step and convince govt regarding it, but most doctors still only know about TSH based treatment so its like living in a stone age. Hope situation change some day.
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Avatar universal
I was curious about why desiccated med was not readily available in India.   so I contacted the parent company which is Actavis.  They could not answer my questions, but directed me to contact their office in India.  Following is the info, if you want to contact them and find out if they import Armour Thyroid into INdia and why there is such a problem getting desiccated med, and why so expensive.

Actavis India Corporate Office
21-22 Kalpataru Square, Kondivita Lane
Off Andheri Kurla Road
Andheri East, Mumbai 400 059
India
Tel: +91 22 66886700 / 74
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Avatar universal
Still seems like a great business opportunity.  Can you find out why T3 costs so much?  Is the manufacturer overcharging, or is there a distributor who is gouging everyone who wants T3 med?  Is T4 med imported also, or manufactured in India?  That is an outrageous customs fee also.  Is that typical for imports, or just for T3?
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Avatar universal
Yes but lies another problem too. The cost of T3 medicines when compared with T4 is much much higher by Indian standards. For example armor thyroid 100 tablets cost almost $100 but levothyroxine 100 tablets here cost around 130 rupees or $2. May be cost one of the major reason why such medicines not available in India. Also customs fee is almost double which means $100 becomes $200. But sufferers are ready to buy it at any cost as the symptoms are so debilitating.
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Avatar universal
Sounds like a great financial opportunity for someone like you, to find out how to obtain large quantities of T3 type meds and become the sole distributor of them in India.  I can't imagine there is any government regulation prohibiting it.   You could also start a patient advocate site to make people aware of the need for T3 med to relieve hypo symptoms for many people.  
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Avatar universal
TSH and levothyroxine based hypothyroid treatment will continue because alternative medicines like dessicated and T3 only ones are not available to buy worldwide like that of levothyroxine.

To give an idea here is one of the top medical drugs site giving information on liothyronine T3 http://www.medindia.net/drug-price/liothyronine.htm

Everything shown there are levothyroxine or T4. In India no such thing as T3 and most doctors here have no clue regarding it.
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Avatar universal
I believe like gimel, that TSH is a screening tool for overt problems. That is TSH test will frequently (but not always) "find" the overt thyroid problem on the two extreme ends.  If the TSH is extremely low (for unmedicated patients) or extremely high, all the TSH test does is cause a "flag" to be raised to indicate that more in depth testing and investigation is needed.

To me the TSH test is analogous to when you go to the Dr office they take your temperature.  If the temp is HIGH, or LOW, it merits further investigation as to what may be the cause for this.

And just as the thermometer is used as a screening tool, it alone cannot detect all that is wrong.  And if say there is a fever, it will NOT determine what the cause is.  It won't diagnose the exact problem. Further investigation is needed.  Similarly a person complaining of knee pain, will still get his/her temperature taken and it will be "normal". But that in NO WAY means that they are fully healthy and OK.  They can have any number of conditions of which the symptoms of the person is what REALLY matters. And further testing needs to be done.  Such as blood tests, or a X-ray or MRI etc to test for Arthritis etc in the knee pain example.

So TSH is OK to "flag" an overt condition. Outside of that, I do not believe TSH has a whole lot of value.  And is particularly true when the patient starts on thyroid medication.  As the medication dose at some point is likely to overpower the pituitary response and thus TSH becomes questionable at best.

TSH however is absolutely NOT the "gold standard" that the medical schools and such proclaim it to be.  If TSH was in fact reliable, then this entire forum would NOT be necessary.  As TSH has PROVEN to be completely inadequate for countless numbers of people.  Time and time again we see how many people are either NOT treated at all, or they are undermedicated, or they are on a roller coaster ride like a yo-yo, up and down in dosage while the patient starts to feel better, only to have the TSH drop and the Dr reduce the dosage and the patient "crashes", followed by TSH increase and Dr dosage increase.  and the cycle continues and the patients in all three cases remain feeling horrible and desparately find this forum and learn just how inadequate TSH is.

The timing of unexplained syndroms such as Chronic fagtigue syndrom, and Fibromylagia both are incredibly timed to enter into existence in a very few short years AFTER the introduction and reliance upon TSH test as the "gold standard".  They are now finding that people who suffer from these "unexplained" symptoms *(because they have blindly "rule out" the possibility that it is thyroid related because the TSH test indicates it is normal) when treated with thyroid suddenly see dramatic improvements in their fatigue and fibrio symptoms!

Also when the Dr's in the past treated patients based upon symptoms and increased dosages until the symptoms disappeared, the average dosage for those patients in the past was SIGNIFICANTLY higher than the average dosage of thyroid patients AFTER the introduction and reliance upon TSH test.  This is a glaring indication that the modern thyroid patients are often times significantly under medicated, resulting in lingering Hypo symptoms which simply happen to in many cases exactly match the so called "syndroms" that magically appeared when TSH testing was "THE" standard.

As far as cholesterol.  Well there may be for sure a link. But the entire cholesterol theory and relation to heart disease is under a lot of scrutiny.  We have "blamed" the cholestrol as the source of the problem simply because of the film that sticks to the blood veins is cholesterol.  However there is on-going research that is indicating that the cholestrol is NOT the source of problem.  It is simply a result of another underlying problem.  Two different paths of research are starting to emerge.  One is that LDL has two different particle sizes. And LDL which is globally "labled" as the "bad cholesterol" is actually made up of two parts.  A small size and large size particle. And that only one of these sizes actually "sticks" to the veins.  So that even if you have "high LDL", if the majority of the total LDL is of the size that does not stick, then you really don't have a problem at all.  This is very analogous to the difference of total and "free" thyroid hormone.  Only one version REALLY matters.

Another avenue of research what causes the cholesterol to stick is that the underlying problem is due to chronic inflamation.  This theory says that what we injest by diet or enfironmental consideration that enter our body one way or another, causes leaky gut and other effects that causes our veins to become inflamed. And the body's natural response to cholesterol is to essentially "paint" the inflamation area with cholesterol so that the body can then be protected by the coat of cholesterol and thus give the body time to heal the inflamation.  The problem is, that due to our environment and diet etc. the agents that are causing the inflamation are ever present and continious. So the body continues to paint over the veins that are inflamed.  This theory then would suggest that if you stop the original cause of the inflamation, your body will not have any need to "pain" the vein walls with cholestrol.  Thus the veins will remain clean.

The recent guideline for dietary consumption of cholesterol has been completely removed.  This is some evidence that the entire house of cards of cholesterol being the ultimate EVIL is begining to crumble. And also the realization that the consumed choleserol has an extremely negligible effect on serum blood levels.  That does NOT give license to eat horribly, it is just the acknowledgement that foods that are even high in cholesterol when you eat them do not have much or any effect on its ability to actually get into your blood.  This is especially true if the consumption of the cholesterol food is also accompanied by high fiber. As a significant portion of the cholesterol attaches itself to the fiber and is simply passed through the digestive track and never able to be absorbed into the blood.

The bottoms line is that it is not unusual for medical field to change over time. That further evidence of something that was at one time viewed as the "evil" item later after time and further study, turns out not to be a problem at all.  Another of the latest items that fit this scenerio is the cholesterol scare creating margirine and other "trans fats".  Which are now being found to be FAR WORSE than the original fat that these "trans fats" were supposed to replace and make us healthy.

Similarly TSH which has been the "gold standard" test, I hope and pray will be one day soon proven to be the false idol that it truly is.  And that TSH  use will be relegated to the screening test for overt thyroid problems and of limited use, rather than the be all, end all to thyroid status.  A situation that has led countless people to remain feeling horrible needlessly.

Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
des, you're right that if one has a conversion issue, T3 can be too low, however, I don't think it's going to get so low that it will be deadly... In order to get into a deadly situation (myxedema coma) one would have to be without any thyroid hormones.   While many people have a conversion problem, I've never heard of anyone who didn't convert "some" FT4 to FT3...

You are correct that low FT3 can cause many symptoms, ranging from depression to heart problems and "does" do more harm than good; however LDL is not one of the most serious problems... Not everyone with high LDL gets heart problems, as I mentioned above, in my husband's case.  I, personally, have had increased LDL and do not have heart problems.

Believe me, we feel very bad for people in countries where T3 medication (or even Free T3 and Free T4 testing) is not available and for those people in countries where it is available, including in our own country, but where doctors refuse to look at anything but TSH or prescribe anything but Synthroid or levothyroxine.  We know this leaves many people very ill when it isn't necessary.  

We have to look at the entire picture, not just pick out one thing to concentrate on.  

Those with low Free T3 can try to increase conversion by taking selenium or iron, other of which are necessary for proper conversion.  I've read a few articles that say diet can help, but I haven't seen any scientific studies to back that up.  I do know that a healthy diet will benefit everyone, in the long run.
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Avatar universal
Thanks for all your efforts.
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Avatar universal
Where is the link that confirms great inverse correlation between T3 and LDL?

The most important complication of low Free T3 is not increasing LDL numbers.  There are many complications of low Free T3, not just LDL.  In fact, as I mentioned above, LDL is not even in the top 10 signs/symptoms that result from hypothyroidism.  

There is nothing in the link you gave above that is new to us or that we haven't been telling our members for years.  I agree that many patients feel helpless because doctors are not doing what should be done to test, diagnose and treat hypothyroid patients.   Believe me I am doing everything I can to change that situation, but the paper is not quite yet completed and posted.  
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Avatar universal
Here is a detailed description regarding this issue

Low T3 Syndrome

http://chriskresser.com/low-t3-syndrome-i-its-not-about-the-thyroid/

We can see several comments and their thyroid results, many on levothyroxine values with normal TSH but T3 values too low and feeling helpless as doctors not doing anything regarding this.
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Avatar universal
Low Free T3 value's most important complication is increasing LDL numbers. Everyone agree keeping LDL cholesterol numbers low is essential but often forgets keeping their T3 values in optimal ranges in order to accomplish that.
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Avatar universal
Its possible to bring TSH down by giving levothyroxine but their T3 may not be in optimal range and sometimes can get too low due to increased conversion of excess Free T4 to Free T3 if have T4 to T3 conversion problem. In countries where levothyroxine only treatment option this situation is deadly and doing more harm than good. Low T3 can slow down everything and cause symptoms ranging from depression to heart disease. With low T3 LDL cholesterol number can increase and end up cardiovascular issues.
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Avatar universal
The only value for TSH in initial diagnosis is to identify overt hypothyroidism or hyperthyroidism and to distinguish between primary and central hypothyroidism.  That is because TSH does not correlate with the tissue effects of thyroid hormones (symptoms).

So yes, Free T3 is much better than TSH when treating hypothyroidism, but the most important consideration is signs/symptoms.  LDL is one of those; however, LDL is not one of those that exhibits good sensitivity and specificity.  The signs/symptoms that exhibit the highest highest positive and negative predictive values are those shown in this scientific study.  Following is one of many links to information about this.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3169863/

If T3 and LDL have such a great inverse relationship, please give us a link to graphical data showing the correlation between the two.   And even if there is such a great correlation, why bother using LDL as an indicator of thyroid status, why not just use Free T3 instead, as part of the diagnosis?
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Hi des900

LDL is not a good marker for many of us, because there are so many things that can cause cholesterol levels to increase, besides hypothyroidism.  It's normal for the body to produce cholesterol and many people produce LDL when they aren't even hypo... my husband is one example of this.  His LDL is very high, but his thyroid levels are in the normal ranges.

Many of us need more than just levothyroxine to get our Free T3 levels up to a point, at which we can be comfortable.  Of course, we do have to keep in mind that many of our members are in other countries and do not have access to anything but T4 medications.

I'm not sure I understand what you mean by "TSH is actually a killer"...
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Avatar universal
LDL and Free T3 or T3 is much better than TSH value when treating hypothyroidism. Me myself have found a strong relation between these two. When my T3 is too low my LDL no is increasing while T3 increase LDL decreasing.

TSH is actually a killer especially if individual is not feeling well in lower TSH numbers which is brought by levothyroxine replacement therapy most because of poor T4 to T3 conversion issue. But this can be easily found out by individual itself if they checked their LDL cholesterol value along with thyroid panel.

My advice is find a levothyroxine dose which gives maximum T3 value or at least not make existing low T3 to go even lower due to reverse T3. T3 and LDL have a great inverse relation which I think all dotors and individuals should be aware of and not take TSH as only criterion to determine appropriate levothyroxine dosage.
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649848 tn?1534633700
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