Thyroid Discussion

Pharma / TRT Testosterone Replacement
1

There was some discussion in one of the other threads about the reliability of information provided by sites such as www.stopthethyroidmadness.com. I’d like to continue the discussion here, in an appropriate thread. I’d also like to use this thread as a resource for thyroid information, such as useful studies, press releases, etc.

A little backstory for those who aren’t aware: many people make the claim that hypothyroidism symptoms are very similar to hypogonadism symptoms, or that the symptoms cover a very wide spectrum of negative effects, and that the tests that are regularly run (i.e. TSH and fT4) are insufficient for diagnosing hypothyroidism on their own. However, most medical professionals consider the TSH+fT4 panel to be sufficient.

There is also a lot of confusion and controversy about the proper range for the TSH test. Specifically, a lot of medical professionals and labs use the 0.3-4.5 or 0.3-5.0 range for diagnosing hypothyroidism (above 5 → probable hypothyroidism). However, some medical professionals, and many individuals who believe that they have hypothyroidism (and who have benefited from treatment), believe that the upper limit should be 3.0, 2.5, or even as low as 1.0 for individuals that are expressing symptoms. Here are two useful links from medical professionals who argue in favor of a lowered upper limit:
http://www.aace.com/public/awareness/tam/2005/pdfs/tsh_backgrounder.pdf
http://www.aacc.org/SiteCollectionDocuments/NACB/LMPG/thyroid/3c_thyroid.doc

TysonKilpatrick posted a rebuttal of many of STTM’s (www.stopthethyroidmadness.com) hypothyroidism claims in another thread. I have copied it here:

[quote]Purechance and Akaji,

In the interest of full disclosure, I have not vetted all of the information on STTM and so will not damn the entire site since that would be unfair. Before I give a few specific examples that I pulled from the first page I came to when I visited the site let me take a second to make a few general statements about medical information in general and some situations in which skepticism should be the default:

  1. The site is moderated/written by a person/group with an agenda i.e. revenge against tendentious and intellectually lazy western medicine (like STTM’s stated raison d’etre)

  2. The site is maintained by people with no medical background. This is a classic case of a wiki expert who knows just enough to be dangerous and make some valid points while not understanding the complexity of the system.

  3. The site promotes one malady as the “real reason” for just about all that ails you. They take non-specific symptoms i.e. fatigue, brain fog, depression, weight gain, etc., which can be caused by about 1000 other disease states and blame them all on one underlying problem. I think everyone on the this board with TRT experience can vouch for the inaccuracy of this position. If hypothyroid isn’t your thing try looking up heavy metal toxicity, vaccine fearmongers, qui-gong practitioners, etc. They all sound almost exactly the same.

  4. They move the goal posts constantly. So if your numbers are out of whack there’s your problem, if they are perfect you still have a problem and the stupid doctors are missing the details somewhere. The pet issue (hypothyroid) is always to blame for unimproving symptoms regardless of the evidence to the contrary.

Now, do these things make the information incorrect and negate every point the site makes? Of course not. Some of what I’ve seen on the STTM site is valid, for instance. This makes it all the more insidious for the lay person because there is enough correct information that it obfuscates the incorrect/oversimplified material and confuses the reader.

For a few particulars, and again this is just what I pulled from the first page I saw and I’m extrapolating to the rest of the site so grain of salt…

The claim that the TSH test alone is ALWAYS inadequate. This is simply false. The TSH level has been validated so many times as an excellent marker for thyroid function that it hardly bears argument. Remember that there are a HUGE number of extremely intelligent people who do this for a living i.e. practicing specialist, that vet the literature constantly looking for new ways to help their patients, that to conclude that the consensus of medical science is so naive as to have missed this cornerstone of diagnosis is quite a bold statement. The few doctors the author quotes are in the minority and they still use the test. Are there situations which make a TSH level ALONE inadequate? Absolutely…that’s why we run more tests. The thyroid is not that complicated in the scheme of things and there are a select number of places that things can possibly go wrong so if a person is symptomatic despite a “normal” TSH, no physician would withhold further testing because the lab said the person was “fine”. That’s a strawman.

Another example surrounds the sites interpretation of adrenal labs. The author really muffed this one and it is a great example of a person reading a text/wiki and then posting information without really understanding it. DHEA is not the mother of all hormones/steroids and is therefore not the end all marker for adrenal/steroidal function as is the claim. The ACTH stim (cort stim test) does not require fasting, can be done at anytime of day, does not require a doubling of cortisol for a normal reading, etc. etc. I could go on but I really don’t have time right now. If there are any specific questions I would be glad to field them.

And I don’t call these sites malpractice since they aren’t run by practitioners, just to clarify.[/quote]
This was my response, which lead in to this thread being created (per VTBalla’s request, as this discussion was on his personal thread):

[quote]Thank you for the response, Tyson. I appreciate the info.

Regarding the TSH test - what is your opinion on the controversy re: the correct lab ranges? E.g. there’s the AACE 2003 report stating that 0.3-3.0 should be the range, and the NACB 2002 report stating that 0.3-2.5 is likely to be the range in the future; there are also studies saying that a TSH over 2.0 indicates a significantly higher risk of hypothyroidism developing later in life. On the other side of the issue, many boards, groups, studies, etc. are claiming a TSH of 4.5 or 5.0 should be the high range, and some even say that a TSH below 10.0 should never be treated… it’s a very confusing situation to me. [/quote]
We can use this thread for generalized thyroid and hypothyroid questions, theories, etc.

2

Akaji,

You’re summation is pretty much spot on. A major point that you brought up that needs to be emphasized again and is that the symptoms of hypothyroid do overlap with a number of other conditions such as hypogonadism. The tendency for people, MD’s included, is to self diagnose, look for confirmatory lab data to support their presupposition and then refuse to adjust the diagnosis when the labs don’t agree with it. When all you have is a hammer everything looks like a nail…

So to address the topic of TSH and thyroid function I would begin by saying that this is actually at the penumbra of opinion in practice. I work with several endocrinologists and they all have different opinions on the topic. One will treat a TSH over 3 ONLY if the symptoms are compelling. The idea being that the thyroid acts as a depot of thyroid hormone and therefore a trial of medication is much less risky than say testosterone since you don’t have to worry about decreased production through negative feedback causing a delayed rebound if the meds don’t work. Another refuses to treat a TSH below 10 based on their experience of normal physiologic ranges and the fact that true hypothyroidism i.e. Hashimoto, etc. will present with dramatic TSH levels (sometimes in the hundreds) and that a level of 10 is insignificant. Of course, this is assuming that hormone levels are adequate and other labs are within normal limits. I tend to think that this position is a little outdated and can miss some subtly in HPTA function.

A major unstated premise that patients and doctors get their wires crossed on is the idea of disease vs optimum health. If I go into see a doc complaining of general symptoms such as those listed for hypo(gonadism/thyroid) the first thing any MD is going to think is that “I have to make sure this guy isn’t dying”. That is the position they begin from and it can cause them to minimize the patient’s subjective discontent with just “not feeling great” when they find out that everything is more or less ok i.e. they don’t have cancer. On the other hand, the patient is more concerned with optimizing their health and feelings of well being rather than just doing enough not to die. For example, you go in and get a thyroid panel and get a fT4 and TSH and it comes back that you are in the normal range for fT4 and have a slightly elevated TSH of 3.4. The MD is likely to be underwhelmed by this since hormone levels are fine (and the reason they don’t usually measure a fT3 is that conversion in the periphery is so robust that there are only a few disease states that can interfere with it enough to overcome the glands ability to produce more fT4 to compensate). Bottom line, a slightly elevated TSH is usually not going to indicate a significantly diseased thyroid and therefore treating for hypothyroid is unlikely to make any major contribution to making the patient feel better. But what happens is that people get treated with (god forbid) T4 only meds and don’t feel any better at all. Instead of thinking, “hey maybe the thyroid thing wasn’t really my problem”, they cling to the idea that it just has to be hypothyroid and that the MD is an idiot and should have used Armour. Almost never the case. If the TSH corrects with T4 only meds…that means the drug is doing it’s job.

Point of the last paragraph is that very subtle abnormalities in lab values means that you will get very subtle benefits out of correcting them with meds. It’s not going to be a life changer.

My opinion on TSH: There are compelling arguments on both sides of the fence that are much more nuanced than I went into here but I think that when you start creeping over 3 and have coinciding symptomology to support a diagnosis that you should give meds a trial to see if things clear up.

If I forgot to cover something that you are curious about please let me know. I had to write this on the fly and may have been about as clear as mud.

3

Sexual functioning and libido are hugely affected by ones general sense of well-being. So much so that I have advocated that often, libido is a really good measure of one’s well-being. So low thyroid levels or anything else that causes problems can be expected to have negative effects on aspects of one’s sexual health.

4

Tyson - I am sorry, but I have to completely disagree with you on many points. I am not saying that I am right on any of this because it is all a matter of perspective and opinion - more than likely we are both right and we are both wrong.

I am feeling a bit under the weather right now so my arguments here might not be a robust as I would like.

first you say that you haven’t actually read through their site and are basing your opinion on what you saw on their first page - but yet you were comfortable enough to accuse them of malpractice. You accuse them of not understanding the full picture when you haven’t even given their site a full review. I can’t reconcile those two facts.

The problem there is that 90%+ of doctors stop there. If you are not dying or at threat for immediate harm, they won’t take any action regardless of your symptoms BECAUSE the tests show you are not dying… I would be glad to bet you $10,000 that if you took a list of symptoms that indicated hypothyroidism to 100 doctors and were actually able to get them to run a TSH test and get a result of 2.5 that 90% of the doctors would not take any action (even though the symptoms are causing significant quality of life issues). Well, some would take action - at least half would ask you wanted a prescription for an antidepressant.

[quote]1. The site is moderated/written by a person/group with an agenda i.e. revenge against tendentious and intellectually lazy western medicine (like STTM’s stated raison d’etre)

  1. The site is maintained by people with no medical background. This is a classic case of a wiki expert who knows just enough to be dangerous and make some valid points while not understanding the complexity of the system. [/quote]

you admit that doctors are lazy (I think somewhere) so why is a site that fights against that bad?? The problem is that doctors are one extreme and are really trained to only treat people at risk of dying, and places like this forum and STTM are cast as being on the other extreme do it all yourself (even though that’s not what they recommend - they recommend finding a doctor to partner with you). There is a happy medium. Take what you can from the docs and from the self help sites and get the best treatment possible somewhere in the middle.

I would also argue that 90%+ of doctors out there don’t ‘understand the complexity of the system’ but they have such a huge ego that they refuse to admit to that fact.

the site also recommends specific tests to confirm if your thyroid is an issue or not. I don’t see anywhere were they recommend treating if your TSH is 0.5 to 1, your cortisol is ideal, etc. They are simply saying that you shouldn’t just accept the quack doctor telling you that your symptoms are all in your head and that you are fine because your TSH came back at 2.5 so just go away.

wait!!! so you are saying that if you have multiple life altering symptoms yet your Thyroid tests come back ideal that you are perfectly fine and don’t have a problem?? what about all of those problems you are still facing?? To me it means that you or the doctors are missing something - maybe hormone, maybe heavy metals, maybe something, but if you have life altering symptoms then there is a reason and a cause, right? shouldn’t the doctor help you find the reason behind the symptoms and do what is necessary to fix the underlying issue?

this is 100% your opinion and differs greatly from the actual experience of others (like myself) who have slightly elevated TSH and who did see MAJOR contributions to quality of life by treating their thyroid.

if you have TSH > 1 AND multiple hypothyroid symptoms that were having an adverse impact on quality of life, then I would recommend additional testing of ft4, ft3, reverse T3, 8am Cortisol, and ferritin. If any of those came back at less then IDEAL (not normal, but ideal) AND again you had several hypothyroid symptoms, why wouldn’t you treat the person?

the thing is, we are all different genetically. bad example here but just because 65% of people might be fine with TSH of 2.5, why make the other 35% suffer with the symptoms just because ‘others’ won’t see major contributions to their wellbeing?

I know that I am sputtering here, but it is hard to make a concise position statement when there are so many statements, innuendos, and opinions (being positioned as fact) that I disagree with.

personally, I love the STTM site and believe that people need to be empowered to look out after their own health. You definitely can’t depend on doctors to have your best interest in mind or to even know what they are talking about. You are responsible for your own body and have to be your own self advocate.

How many people here have had to fight with their doctors to get them to treat or even consider low T as a real problem? Just look at the post by SportsPT - that seems like 99% of the conversations out there go just like that.

Tyson - most of what you post about STTM could easily be said about this site, and HRT programs in general (being a catch all diagnosis) and by your logic, this forum should be shut down and people should just go to their doctors for treatment and not rely on ‘people with no medical background’ for advice or recommendations. but hopefully if you read through any of these posts you will see the level of care that doctors and the medical establishment is providing and realize that sites like STTM and here are critical to helping and supporting people who are let down by ‘the system’ time and time again.

should people rely 100% on these sites? heck NO, but they are crucial to provide some advice, direction, support, and guidance to get people moving and hopefully in generally the right direction - which is more than I can say for the medical establishment.

5

Purechance:

Ha, I’m sorry I upset you as much as I did. We definitely have some major misunderstandings which are more than likely my fault. Let me try to clarify and respond to your concerns. (I’ll throw my own caveat in that I’m still at the hospital and don’t have as much time as I would like so I’ll try to get by later if I miss something, just let me know if I do)

I’ll number my responses to correspond to your points above instead of reposting:

  1. In my first sentence I said that one should take my opinions with a grain of salt because I hadn’t read ALL of the info on the site. I did read more than one page. I simply took the examples I did from the first page as I thought I had mentioned. On a seperate note, I addressed the fact that you can’t call pages like STTM malpractice since they aren’t legal practitioners.

  2. I was trying in this part of the post (poorly it seems) to give the perspective of the MD vs that of the patient in an effort to shed light on the consistent miscommunication and resultant hatred of the “medical establishment” that seems to quickly follow. It was NOT intended to be my opinion or an accession of how things should be. I agree that there are better MD’s out there than others and that some would indeed stop looking too soon, just not in the epidemic way that you seem to believe happens in 90+% of cases. And to address your example: If you went in with symptoms consistent with hypothyroid (again, they are NON SPECIFIC) and a TSH came back of 2.5 then there are only about 2 instances that would keep thyroid problems on the differential and neither is very likely. 1. you had subacute thyroiditis and are in the phase of disease in which you are switching from hyperthyroidism into hypothyroidism and you just so happened to have the lab drawn during this narrow window of several weeks. 2. you have a secondary or tertiary hypothryroidism. And this is exactly the type of case I mentioned in the first post in which a test of hormone output would tell the story and most docs would check for it. Again neither of these is overwhelmingly common and therefore those 90% of doctors would be doing the right thing by putting the thyroid problems lower on the differential pending the exploration of other causes for these NON SPECIFIC symptoms. Is it possible that you could still have a thyroid issue at the end of the day? Sure, just less likely. Once more, no competent physician would run a TSH ONLY on a new patient with symptoms of thyroid disease. They would only run a TSH alone after a diagnosis has been made in an effort to monitor an established condition. The full thyroid panel exists for a reason and most if not all specialists will use it for an initial work up (and this would include the parameters you list later).

  3. Other than the characterization of my opinions here I completely agree with this statement. One exception is that most physicians aren’t as extreme as that. I may have painted that picture in my previous post which would have been a mistake. Do some physicians have egos that obscure their judgement? Damn right. But they do understand the system in most cases and to label all specialists as ignorant smacks of conceit. Sometimes it’s the patient that doesn’t fully grasp what’s going on after reading lay sites and random medical write-ups that are posted on the net. That’s all I meant to say.

  4. When I was writing that list of things to watch out for I really meant them to be general guidelines and wasn’t aiming all of it at STTM. Sorry if that didn’t come across. When a site author has an agenda then they tend to become a tad dogmatic and emotional and can therefore give the wrong impression when read by a neutral visitor. Similarly, it seems as though these same sites have a hard time looking in other directions when signs point somewhere other than the issue for which they have taken up the flag. I absolutely meant to include other sites such as those that push chinese medicine, heavy metal toxicity, etc. If STTM encourages people to look for alternative reasons for symptoms of hypothyroid when labs come back normal then I do not include them in the general critism. And no competent MD would tell you that “it’s all in your head” and not investigate obvious symptoms just because one line of testing comes back normal. Again that’s a strawman.

  5. I think that this was just worded poorly. What I meant to say was that no matter how your labs come back, some of these myopic sites say that you still have their problem. If the labs come back bad = problem (obviously). If they come back perfect = you still have our disease. I’m in no way saying that you don’t have a problem, only that it might not be the one you tested for which is exactly what you said so we agree.

  6. Again I was sloppily trying to write that comment in the voice of the physician and only meant it to say that the MD is going to look at more likely causes of a persons symptomology before coming back to a slightly errant lab value as the main cause for the patient’s (life altering) symptoms. They should come back to it once they have exhausted all other possibilities so again we agree.

I can see that you love the STTM site and once again I don’t mean to say that everything it says is wrong and dangerous. It DOES contain incorrect information concerning lab interpretation and is written in a tendentious way which lends itself to bias.

We do agree 100% that you have to be your own advocate. Asking for help on forums and searching the internet are tools that can be used. All I meant to point out is that these sources should be given their correct context and that it is very easy to be led astray by some of the material that is out there. I don’t think we would argue on those points, I know you wouldn’t want people to believe everything they read on the internet and I was just trying to point out that this area is particularly susceptible to half truths and (sometimes well intended) misinformation. I know that this journey is extremely frustrating and it is very easy to become cynical and think that the “medical establishment” is inept. Remember when you are reading the posts here and elsewhere that you are reading through a filter of frustration and that situations may be more complicated or misrepresented as a result. I truly didn’t mean to minimize your experience or anyone elses. These are very serious and important problems and I hope that we can all work together to find the answers.

6

WOW, this really makes it confusing on which way to go with treatment. I am reading and reading about Thyroid issues and it is beginning to become slightly overwhelming.

As both of you point out, many opinions vary which really makes it difficult what to base your decisions on.

7

iroczinoz: I took another look at your thread to reacquaint myself with your issue. You have a TSH that’s been measured as high as 8.33… at the very least, a trial of Levothyroxine to see if it improves your symptoms or other bloodwork would be wise. Using a treatment that provides T3 and T4 (e.g. Armour) may help if you’re in the small population that doesn’t react to T4-only meds.

8

I appreciate the detailed response (truly).

and as much as it pains me to admit, yes your initial post did upset me, but that is my issue to deal with and should in no way reflect on you. I apologize if my tone came across as harsh. I did try to temper my post (but apparently was not as successful as I had hoped).

and while I like STTM and think that it is helpful, I by no means believe that it is perfect or the end all to be all. It is simply a reference source that has some good information that I personally have found to be helpful.

[quote]TysonKilpatrick wrote:
2. And to address your example: If you went in with symptoms consistent with hypothyroid (again, they are NON SPECIFIC) and a TSH came back of 2.5 then there are only about 2 instances that would keep thyroid problems on the differential and neither is very likely.[/quote]

I think this is where we have a major difference. for me personally I have found help (as have countless others according to the various personal posts that I have read and according to several doctors I have worked with) in treating thyroid issues with TSH > 1 and < 3. People can get better when they treat their non-ideal TSH and their symptoms can ‘miraculously’ disappear (if that was the underlying cause).

maybe there is just a difference in how we are viewing likely differential. It seems like docs only focus on the most likely causes, and when those don’t pan out, they never go back to the other less likely alternatives even when directly asked by patients because the docs don’t have any experience in treating those less common alternatives - so they get defensive when pushed and keep trying to go back to what they know (or what the antidepressant drug rep just told them last week - so they want to write an easy script)

[quote]TysonKilpatrick wrote:
Once more, no competent physician would run a TSH ONLY on a new patient with symptoms of thyroid disease. They would only run a TSH alone after a diagnosis has been made in an effort to monitor an established condition.[/quote]

again, another major difference. Have you read any of the personal stories here or on STTM? do you know how hard it is to even convince a doctor to run a simple TSH test or Total Testosterone test? Let alone get a correct diagnosis based on the results? Your view of the world seems to be an ideal one and not that one most of us here have experienced that world (even Brick with his great doctor admitted to going to multiple doctors who didn’t have a clue before stumbling upon his current doc).

Plus I believe that monitoring TSH only to monitor an established condition does not give you sufficient information (as do several MDs). If you are taking any kind of thyroid replacement medication, your TSH will more than likely be near zero (as the replacement thyroid meets all your needs) therefore you have to monitor FT4, FT3, RT3 to truly understand what is going on and if the medication is converting the way it should - but you are right that most doctors insist on monitoring off of TSH only and many force their patients to reduce dosage if their TSH drops below 1 regardless of the returning symptoms or other issues the reduced dosage causes.

[quote]TysonKilpatrick wrote:
3. Other than the characterization of my opinions here I completely agree with this statement. One exception is that most physicians aren’t as extreme as that.[/quote]

but the thing is most doctors are exactly that extreme. again, please read through this site, read through the patient’ experience on STTM. This is how doctors are. Did you read SportsPT’s post? multiply that experience by most of the people that post on this board and elsewhere. Doctors are a major part of the problem.

Are overzealous patients part of the problem? possibly, but if so to a much smaller extent. The thing is doctors are human, they don’t know everything (but most think they do), and most don’t want to partner with their patients. They want their patients to do as they are told, to not dare question their recommendation, or ask for alternatives. That may not be your experience, but if you read you will see that at least here you are in the minority.

[quote]TysonKilpatrick wrote:
4. And no competent MD would tell you that “it’s all in your head” and not investigate obvious symptoms just because one line of testing comes back normal. Again that’s a strawman. [/quote]

if only that were true… I would love to live in that world. I wish I could ask for everyone to raise their hand who has been told this exact thing word for word. I know you would be surprised. Why do you think so many people are on antidepressants - do you know how many people here were offered antidepressants by their doctor before other treatment options or before even running the correct tests? any chance that any of those people simply have undiagnosed hypothyroidism, what about low testosterone, or estrogen dominance? do you know how many people were able to feel better once the cause of their ‘depression’ was found and treated without going on anti-depressants?

Doctors in general look for the easy answer, the quick fix. They don’t have the time or energy to dig into to each and every case they see. They can’t. They are overworked, underpaid, and stretched too thin and have to constantly deal with insurance companies. They also rely too much on the drug reps and pharma companies to educate them - now there is a source of unbiased information. I am not blaming the doctors, it’s the entire system that is broken.

[quote]TysonKilpatrick wrote:
6. Again I was sloppily trying to write that comment in the voice of the physician and only meant it to say that the MD is going to look at more likely causes of a persons symptomology before coming back to a slightly errant lab value as the main cause for the patient’s (life altering) symptoms. They should come back to it once they have exhausted all other possibilities so again we agree. [/quote]

I would love this to be true. I would love to have the eight doctors I saw to look at the likely causes of my symptomology and give me options, ideas, suggestions, anything… instead what I and others keep receiving is 'well, I’m not sure. everything is “in range” so you are fine. I don’t know what could be causing your symptoms. We’ll test again in 6-12 months and if you are still feeling bad, no energy, no libido, can’t lose weight, are cold all the time, are foggy, with no drive, no ambition, no quality of life then maybe we can look at putting you on a antidepressant." I really do wish I was making this up, but this is the reality that exists today.

are all doctors this way? no. but a vast vast majority are. Most people don’t want to have to think about their issues or problems. They want the doctor to handle everything, and expect the doctor to handle everything, so it is natural for doctors to start thinking they know everything and can help everyone (and their egos grow), but it’s a trap with no way out in the end - and then everyone suffers.

I did reread my post here and made several changes to reduce the rhetoric (hopefully I was a little more successful this time).

I hope you have a great evening, and I look forward to continuing our conversation.

9

Purechance:

I just spent about 2 hours at work replying to your post…I was trying to attach some pictures…lost the whole F’ing thing. I just don’t have the heart or the time to redo it now. Just wanted you to know that I wasn’t ignoring you but I should probably go check in on some patients (aka, do my freaking job).

So, so frustrating.

10

yeah, that is one of those ball breaker events. I’ve done the same thing a couple of times. Spent about the same amount of time (over the course of entire day) once on a subject and accidentally hit back space which sent the browser to the previous page and I lost it all. I just had to walk away and I don’t think I was ever able to make myself go back to repost those thoughts.

It sucks. Punch a hole through the wall sucks.

11

I was sitting in my office down the hall from the nursing units and shouted “Fuck!” and “No!”, wayyyyy too loud. After the third person knocked on the door to see if everything was ok I started getting worried about losing my professional credibility so I just told them that I had gotten back some bad labs on a patient.

12

Ouch Tyson, sorry to hear that. I’ve had that happen a number of times, so whenever I’m writing on a forum I hit Ctrl+A, Ctrl+C regularly! (‘select all’, ‘copy’ respectively)

I’m also a programmer, so I hit Ctrl+S about every 5 seconds, even when I’m not in a program that allows for saving the text I’m writing (e.g. a web page)…

13

So where does this go? The subject line used the word ‘discussion’ and that is what we have. But the first post stated "thread as a resource for thyroid information, such as useful studies, press releases, etc. "

This post, in any case, is now not suitable for a sticky if that was Akaji’s intent.

If you want a sticky, someone has to take charge of the whole thing and discourage chatter. The opening post can be edited over and over again by the OP to develop it and refine it. As thyroid issues are so complex, other knowledgeable people should PM the OP with suggestions. The result can’t cover everything, so it should be a guide to understanding with links to details elsewhere. The sticky would otherwise have to be a book or its own website. Speaking of books, the sticky should recommend books that are good. Links to Amazon for the books is very useful as it provides information about the book and means to purchase as well.

There can be other posts supporting the sticky that support it. These narrower threads will not be stickies, however, the sticky can have links to these supporting threads; one of which can be a discussion thread for chatter that is not basic information. A non-sticky list of thyroid books can be linked from the opening post of the thyroid sticky.

Why put all of the material into the opening post of the thyroid sticky? That is the only place where the OP has control. After that, you will get off topic posts and guys trying to discuss their cases there instead of their own ‘case’ threads.

In a sticky, the end of the opening post needs to state the rules for the sticky to keep it from getting hijacked. And the second post needs to repeat the same. We need to do this because there does not seem to be a way that we can self moderate the content of stickies.

Later on we can refer guys to the sticky when thyroid issues come up in there ‘case’ threads.

14

A whole lot of talk in a thyroid thread with little mentions of the words Free T3 and Free T4.

15

this is really more of a philosophical discussion about STTM and forums such as these, the current medical establishment, pharmaceutical establishment, and the relationship/interaction between patients and doctors - then it is about thyroid specifically (per the discussions included in the initial post).

16

After losing my magnum opus I’ll try to refine the discussion into more pertinent information for the general readership since apparently this was supposed to be a sticky. Didn’t get the memo.

I see Purechance’s issue’s stemming from two major premises that I will address separately:

  1. Frustration with the medical community.
  2. Disagreement on the use and interpretation of thyroid related labs.

Briefly:

  1. I do not/did not ever mean to downplay or minimize the experience of anyone when it comes to their medical treatment. If you feel that you have been let down or inadequately treated by a physician then you were at some level, if only on a personal one. Sometimes MD’s do not share their underlying thought processes with the patient and that can make things seem like they are ignoring/overlooking information. The point of my posts was to counter the rampant “conspiracy theory”-like attitude against the “establishment” that pervades the forum. I am trying to show that the conformation bias that develops when you read forums is not always a true reflection of the medical community as a whole. The people who post here or are looking for help are most likely being treated exactly as you have described but that represents a minority of the total treatment population. It seems like 100% of cases are poorly managed when you are looking at sites like this and the sentiment is powerfully reinforced through personal anecdote. I’m not apologizing for shitty doctors, of which I am as vitriolic as you are…maybe more. The only reason I am even addressing this at length is that I feel that when you develop this deep distrust of “western” medicine that the tendency is to grasp for straws, some of which will be in the clutches of alternative medicine practitioners or gurus who pander unscrupulous modalities that have been shown to be either outright dangerous or at the least, ineffective.

  2. Now for the science. The major thing I want to discuss is the utility of the TSH level and the use of ancillary markers of thyroid function to determine the diagnosis and to dictate appropriate treatment. To do this I’m going to give a brief primer on the biology with an assumption that most of the people reading this have a greater than average grasp of the basics i.e. hormonal feedback loops. I’m not trying to recreate a textbook here but there is a lot of misunderstand over labs and the only way to make sense of it all is to understand what it is you are measuring and why.

The hypothalamus secretes thyrotropin releasing hormone (TRH) through the infundicular stalk to the pituitary gland which stimulates the release of thyrotropin stimulating hormone (TSH). TSH binds to receptors on the thyroid gland which causes increased metabolism within the gland and increases the production of thyroid hormone primarily in the form of T4 (the mechanisms through which this occurs are important but beyond the scope of this topic). The gland secretes about 100mcg of T4 and only about 5mcg of T3 per day. See the first picture for an overview of the feedback loop. Pay close attention to the fact that it is T3 that is the major repressor of TRH and TSH production. This is vitally important to recognise and I’ll come back to it soon. I think I can only post one pic at a time so I’ll continue this in a new post.

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Cont. from above:

So the T4 is release into the circulation where it binds to carrier proteins (TBG) in much the same way T binds to SHBG. Free T4 is the biologically active hormone and it disassociates based on equilibrium constants. From here the T4 has one of two fates. See the pic above for a picture of the metabolic paths T4 can take:

Deiodinases (of which there are 3 types) convert T4 into T3 or rT3. (one correction from above is that the average person secretes 100 nmol not mcg of T4 per day and 5 nmol of T3)

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Cont. from above:

So now the FT4 can return via circulation to the supraventricular nucleus of the hypothalamus where it is converted by D3 (an deiodonase specific for neural tissue) into T3 which modulates the release of TRH. Simultaneously or independently, T4 can be deiodinated in the pituitary to form T3 which modulates the release of TSH. So TSH only goes down in the presence of high levels of thyroid hormone (T3 specifically). TSH is exquisitely sensitive to hormone levels and reacts to changes (high or low) in thyroid level in a logarithmic way. For example, for every one unit of decrease in thyroid hormone (T4/T3) in the serum the TSH increases by 10 units. See the graph above for a clearer picture. The point is that this is why there is a controversy over when to treat TSH levels. You can see that almost insignificant varience in actual hormone levels can cause large increases/decreases in TSH levels. So the difference in a TSH of 1 and a TSH of 10 may not actually be a big change in hormone output.

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Cont. from above:

Remember that the ONLY important thing clinically is how much hormone you have in circulation (assuming you don’t have a rare condition called thyroid hormone resistance syndrome, which we will assume you don’t for now). So by measuring a fT4 which measures how much hormone you have in circulation you can tell if you are hyper or hypo thyroid. But wait, if T3 is the active hormone then why do we measure T4? Because the conversion of T4 to T3 is so robust and well regulated that even if there is a temporary problem with conversion, the gland compensates by simply releasing more T4 (which would correspond to an appropriate rise in TSH). So the FT4 is a good reference for overall hormone production. If you have a high TSH and a normal FT4 then you will not (except in rare cases that I’ll talk about soon) be experiencing hypothyroidal symptoms. If you have a primary disease in which the gland is incapable of producing the requisite T4 (this is 90% of cases of hypothyroidism FYI) then you will eventually get a drop in FT4 and will see the tell tale signs of hypothyroidism that I’m sure you are familiar with. So your TSH could be 200 theoretically (probably not in reality) but as long as the FT4 level is normal then you are not yet clinically hypothyroid.

Now I am no where close to finished but I have to put this down for a while. Please wait to comment on the content of the science until I have a chance to tie this all together. If you have questions they may be answered in the posts I’ll put up in the morning.

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I think this got derailed from any possibility of a thyroid sticky a longgg time ago :wink:

it’s not a conspiracy theory when you have gone to 6+ doctors and had the experiences I have had - a short version is on my thread - My HRT Journey (so far). It’s not a theory when two different doctors tell my wife that she needs to get a hysterectomy (major life changing freaking surgery) to ‘cure’ her chronic pain. one refuses to run a simple hormone blood panel “because those never help people with endometriosis.” and the other runs the test but tells her that it is normal and she needs to get the surgery. amazing how when she finally got the tests in her own hands how her TSH for 3.5, and amazing how when she finally found a doctor to run more tests and treat her thyroid and low progesterone, her pain amazingly disappeared.

The sites like STTM did not drive our treatment. We suffered through everything on our own, trying to find answers, and only after experiencing the changes ourselves did we stumble on sites like STTM which simply confirmed what we already knew and had already experienced.

just how many individual stories does it take for it to become pervasive and indicative of the entire community/establishment?

Are there good doctors out there? yes
do doctors want to help people? I believe most do
do doctors actually help people? I would have to say 50/50
do doctors jump to the easiest answer (most likely differential) that is successful in 70% of the cases, and then fail to follow up when the person doesn’t respond because they don’t know what do to or don’t have the the time or experience in treating those difficult 30% non-conforming patients? yes
do doctors jump to write a script to try and cover up (they say resolve) symptoms rather than take the time and effort to find and fix the root cause of the patients problems? yes
are doctors influenced too much by the pharma companies with their seminar and constant drug reps? yes
do doctors have the time to find the root cause of all of their patients problems? no
is it cost feasible for doctors to find the root cause of all of their patients problems? I doubt it

Let me ask you a question - how many people are on anti-depressants? and just how many of those people’s doctors ever recommended testing for TSH or estradiol or testosterone levels (or other known causes of depression) before whipping out the prescription pad? And of the ones who actually got the right tests, how many of those doctors use the ‘updated’ guidelines for ‘normal’ range rather than then incorrect lab ranges used by Quest and LabCorp? based on the posts here plus personal experience plus the post of a number of other forums, it would seem to be a surprisingly large amount of people aren’t receiving the care they should.

so yes, it is my opinion that the entire system is broken. the only reason more people aren’t complaining is because:

  1. a majority have problems that happen to fit the primary differential
  2. as a society people have been trained to trust doctors and rely 100% on what doctors tell them and don’t know better or question their doctor’s recommendations. (i.e. - why do people that it is acceptable to make an appointment for a 10am appointment and that it is normal to have to wait till 11 or 12 before the doctor sees you, and then it is ok to only spend 5-10 minutes with the doc who scans your paperwork that the nurse filled out, before rattling off some advice and then heading out with no chance of a conversation?)
  3. a large number of people are just suffering in silence because their doctors told them they were ‘normal’ and that nothing medical was causing their symptoms and that is was all in their heads, so they go back to work and life and just continue to suffer not knowing any better. only a very small percentage seek help and resources like these to get help because they believe their doctor is looking out after their best interest.

how many people are on the correct medications?
how many people are being harmed by their medication because of a bad diagnosis or quick fix answser?

I also completely agree that there are just as many bad 'alernative practioners out there taking advantage of people - some for profit, some out of misguided desire to help.

I recommend self empowerment. self education and then partnering with a doctor on a mutually agreeable treatment plan. The doctor is simply a paid consultant nothing more whose advice should be weighed and considered, but never considered gospel. Too many people turn off their own brain when seeing a doctor and totally abdicate any responsibility for their own health and well-being.