Ok Folks, It's Time To Take A Close Look At That Thyroid

[mcaimless]

How many of us with dysautonomia, are undiagnosed or under treated for thyroid disease? Is it possible that many of us are actually suffering from a primary thyroid disease that has manifested as autonomic dysfunction as well as a host of other health issues including Fibromyalgia, CFS, joint pain, cardiac arrhythmias, IBS, high cholesterol, depression, fatigue, sleep apnea, and many of our other symptoms? Based on my own personal observations and the results of my re-exploring my thyroid state of health, I?ve found myself stumbling around in the annals of thyroid controversies for the past few weeks. I?ve learned an awful lot (with a long way to go) and I will try to share as concisely as possible what I?ve discovered to date.

First the numbers. Right now an estimated 15 million Americans are diagnosed with thyroid disease. Almost all of them are initially diagnosed based on one simple lab test, the TSH (thyroid stimulating hormone). Whenever the vast majority of us go to our doctors complaining of the usual hypo and/or hyper thyroid symptoms, this is the one test they run, in fact it is considered the ?gold standard? thyroid test. If you are like me (and many, many others) you will be told that your test results are ?normal? and your doctor will move on to other tests to figure out what is going on (or, as with most of us, they can?t figure it out and we go home with no answers). Most of us, myself included, wouldn?t think to question this. After all, the tests are right? right?

I?ve since reached the conclusion that the correct answer may actually be, ?Wrong!?. There is an enormous controversy raging about the TSH test, including its actual efficacy in diagnosing the most common form of hypothyroidism and the ranges that have been established to determine who is normal and who is not.

Of course all lab tests utilize a reference range; if your numbers are within range then you are considered normal, outside the range you are not. And of course, it?s only the lab results that fall outside the range that are considered for further testing and treatment. The American Association of Clinical Endocrinologists (AACE) had recommended back in 2003 that the reference range for the TSH be narrowed from the current of approx 0.45-4.5 (with slight variations from lab to lab) to 0.3-3.0. But this narrower range is almost NEVER followed by any labs even today (my last TSH drawn two weeks ago has a lab range of 0.45-4.50). If this newer AACE range were actually followed then the number of people who are outside the reference range and likely have thyroid disease suddenly swells, by some estimates, to around 60 million, yes that?s 60 million. Many believe that even the 0.3-3.0 range is too wide (The National Academy of Clinical Biochemistry, part of the Academy of the American Association for Clinical Chemistry (AACC), presented in their Laboratory Medicine Practice Guidelines for the Diagnosis and Monitoring of Thyroid Disease the following: "In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 mIU/L because more than 95% of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 mIU/L.") , especially for patients who are symptomatic, who have existing autoimmune disease or family members with thyroid or autoimmune disease. Some more progressive practitioners believe that the upper level of this range should be closer to 2.0 or even 1.50. In fact when hypothyroid patients are treated, most feel best when their ranges are well below the 1.50 level. It?s interesting that even Merck claims that treatment for Hypothyroid should be: ? L-thyroxine, adjusted until TSH levels are in mid-normal range?. So if you are hypothyroid you should have an optimal TSH of 2.47 (or according to the AACE range, 1.65) but to diagnose someone who has hypo symptoms, you have to have a TSH higher than 4.50? (or, if you live in the UK, >10.!)

So why isn?t the mainstream medical profession using the narrower numbers of say 0.3-2.5 as a range for diagnosis, particularly for those who show symptoms and have established risks of thyroid disease? There we stray into the muddy waters of medical politics and how very, very slowly the wheels can turn in updating diagnostic criteria when the old school refuses to yield to the new school in medicine. Part of it is the lack of studies done, and those that are done are heavily funded by the manufacturer of the most heavily prescribed thyroid drug, Synthroid?said pharmaceutical company is also a major funder of several of the mainstream thyroid associations, which dictate many of the rigid guidelines currently adhered to. These associations stick with a very narrow approach and treatment for thyroid disorders with heavy promotion of a single drug for treatment of hypothyroidism (you guessed it, Synthroid). Those who are really into conspiracy theories will hint that there?s a lot more money to be made (can you say, ?Billions??) from drugs that treat high cholesterol, depression, GERD, heart disease, and a host of other thyroid symptoms from undiagnosed and under treated thyroid disease. But the sad point is that those of us who are symptomatic and present with TSH ranges that could be considered outside of normal based on newer criteria and who do not receive further appropriate screening tests are being done a great disservice by not obtaining a correct diagnosis and treatment, with many serious health consequences as a result.

Another twist in the complexities of diagnosis based on the sole use of the TSH test is when the cause of thyroid disease is autoimmune (Hashimoto?s Thyroiditis) which, per Merck, is the most common cause of hypothyroidism. In autoimmune thyroid disease the antibodies will periodically attack the thyroid gland and cause sporadic hypo and hyper thyroid signs and symptoms as the thyroid gland sputters on and off. So TSH readings from someone with this disease can be next to useless as a diagnostic marker as the levels can go up and down depending on the current state of the disease. The only way to diagnose autoimmune thyroid disease is by testing for antibodies, which is only rarely done by primary care physicians.

So I am urging each and every one of you to do the following: First look up all the symptoms of thyroid disease, both hypo and hyper, and check off all the ones that pertain to you. Next, dig out your older labs and check all your TSH levels that were drawn over the years (and your FT3s and FT4s if you were lucky enough to get any). Any TSH over 1.50-2.0 and under .3 is considered suspect if you are symptomatic?but then again, if you have Hashimoto?s then the TSH is pretty meaningless, so if you feel you have symptoms of hypo and/or hyper thyroid then go back to your PCP and request the following tests:

TSH

Free T3

Free T4

Thyroid peroxidase antibody (TPOAb)

Thyroglobulin antibody (TGAb)

Usually physicians or lab techs will want to draw the older thyroid panel (T3 uptake, total T4 (thyroxine), T7) but be aware that these tests are considered by many to be useless.

To diagnose an autoimmune thyroid disease both of the antibody tests need to be drawn; Thyroid peroxidase antibody (TPOAb) and Thyroglobulin antibody (TGAb). If Graves Disease is a concern there are additional tests as well including the Thyroid stimulating hormone receptor antibody (TRAb)?believe it or not, there are people with both Hashimoto?s and Graves Disease.

The ONLY accurate tests for actual circulating thyroid hormones are Free T3 (FT3) and Free T4 (FT4). Unlike the TSH test, these levels of hormones need to be assessed in terms of percentage of normal on the ranges. Both need to be within 50-80% of normal to be in the optimal range (for example, if your FT4 result is 2.7 and the range is 2.3-4.2 then you are only at 21%, which is very low. Optimal would be 3.25-3.3 or thereabouts). **correction: The Free T3 range should optimally at the top or even slightly above range for most people. The FT4 is usually best at the 50-80% of range**

Also for those who are currently being treated for thyroid disease, it?s equally important that your ranges be accurate post treatment. Just what is your TSH and (more importantly) what are the ranges of your FT3 and FT4? Are your ranges 50-80% of normal as well as within 10% of each other? How often are you checked for your FTs? If they are not where they should be then you could be under (or over) medicated and will still feel lousy. Also of further controversy is whether or not to be treated with only T4 (L-thyroxine?as the majority of medical professional do now?sponsored, of course, by the good folks at Synthroid) or a combination of T4 and T3 depending on your levels of FT3 and FT4? But this is a whole ?nother can of worms and I?m not going into that in any depth here?

But, most importantly, how do you feel? Doctors need to treat the patient, not the numbers and this has to be stressed repeatedly with both treatment and diagnosis.

I realize that for most of us this is very complicated and hard to understand. I?m just beginning to wrap my mind around it and I?ve got a long way to go still?so I?m urging YOU to please research as much as you can so as to make your own informed decisions. But given the extraordinary numbers of people who are undiagnosed and under treated for thyroid disease I really believe that we all should take a very close look at our own thyroid health and take a proactive role in learning as much as we can about this, including obtaining the proper tests as well as their correct interpretation and, if necessary, effective treatment for this very common ailment.

Here are some good links:

Nice Thyroid symptom checker:

http://thyroid.about.com/blquickthyroidfacts.htm

On Thyroid Disease and POTS:

http://hubpages.com/hub/Thyroid-Disease-an...tic-Hypotension

For more on Thyroid disease risk factors and symptoms:

http://thyroid.about.com/od/symptomsrisks/...mptomsrisks.htm

TSH range controversy:

http://thyroid.about.com/od/gettestedanddi...a/garbertsh.htm

http://thyroid.about.com/od/gettestedanddi...maltshlevel.htm

A couple of forums of VERY sharp thyroid people who can help you figure out your labs and treatment options:

http://www.healthboards.com/boards/forumdisplay.php?f=122

http://forums.realthyroidhelp.com/viewforum.php?f=14

Thyroid and Fibromyalgia connection:

http://thyroid.about.com/cs/fibromyalgiacf...thyroid.htm?p=1

Is it Fibro or Hypothyroidism? And what about Thyroid Hormone Resistance?:

http://www.drlowe.com/france.htm

Merck on Thyroid:

http://www.merck.com/mmpe/sec12/ch152/ch152a.html#CIHJCBJI

?The? alternate thyroid diagnosis and treatment site:

http://www.stopthethyroidmadness.com/

[futurehope]

Two thoughts:

If the drug company could be making more making by diagnosing thyroid conditions more strictly, why aren't they pushing the stricter guidelines?

I've thought about this recently. I frequently keep my air conditioner off in order to save money. The temperature where my pills are kept could be going over 85 degrees periodically. I may be rendering my synthroid impotent because of the high temperatures. The pharmacist didn't say too much when I asked him about this because he realistically does not know the temperature fluctuation in my house, or the high temperature. He said, "do not refrigerate the medicine."

Anyhow, I think it's a good idea for everybody to be thinking about what you wrote because variations in thyroid can affect many body systems. The problem as I see it with POTS people and autoimmune people, is the VARIATION from day to day and how difficult it is to treat variation.

Peace.

Edited July 7, 2009 by flop
Quotation removed, please use the "add reply" button at the bottom of the page

[EarthMother]

I agree entirely with your premise as I consider myself an expert in Hashi ... having been treating this for 15 years . I'll also add that if your antibodies are high, you may want to ignore your TSH altogether and boost synthroid or armour until the autoimmune attack is over. I've long since given up on endos who get this. But my PCP does and we've been treating it by how I feel for 10 years. BTW, I saw 2 endos last year for complete workups and they still write off my Hashi as a non-issue and affirmed its fine for me to continue treating this with my PCP.

Now for the rain on everyone's parade segment of my soap box speech .... Despite doing everything 'right', checking antibodies, always looking at the full compliment of thyroid blood panels AND titering doses by how I FEEL. I can't say it has made a dent in the unpredictable and devastating POTS crashes. And yes in my case, I do believe the two are related.

When I began surging in April, I could feel a node on the right side of my thyroid gland become tender. I knew I was in another Hashi blowout. But other than tweaking doses (which my doc and I do) there isn't any quick fix -- it takes 6 weeks to adjust to a new thyroid dose -- a HASHI surge. And despite years of suppressing my own production via taking levoxyl or synthroid at the 1-2 TSH range ... I've not been able to stabalize my antibodies for the long haul.

So! I test every 3-4 months during these hard times, tweak and take advil for inflamation associated with the antibody attack ... and just wait it out. Not fun.

Oh and if you want to get real fringe on the topic look up Hashimoto Encephilitis! That's a good controversy. But think about it .... if we know we have antibodies that our body is producing to attack our thyroid ... how far fetche

is it to believe its possible for these same antibodies to attack our ANS.

Ok, rant over. Yes, its important to get this stuff screened. To find a Doctor to treat on how you feel .... But that even then, there's no easy fix from what I see for the underlying autoimmune disorder.

~EM

[ramakentesh]

Some people with POTS can have co-existent thyroid autoimmune disorders.

But the idea that a masked form of thyroid disorder was behind prettymuch every unexplained disorder around in the early to late 90s has proved to be about as credible as vapours causing the bubonic plague im afraid. It was also actually quite dangerous - there was a doc somewhere that sent three CFS patients into thyroid storm if I remember correctly.

Thyroid disorders can trigger POTS and other symptoms and they are very similar. But the thyroid is usually one of the first things checked when a patient exhibits the signs of POTS and despite what you might read it isnt rocket science. Although by gees my Mum's experience can attest to how hard it is to stablise and keep in check.

[futurehope]

Some people with POTS can have co-existent thyroid autoimmune disorders.

But the idea that a masked form of thyroid disorder was behind prettymuch every unexplained disorder around in the early to late 90s has proved to be about as credible as vapours causing the bubonic plague im afraid. It was also actually quite dangerous - there was a doc somewhere that sent three CFS patients into thyroid storm if I remember correctly.

Thyroid disorders can trigger POTS and other symptoms and they are very similar. But the thyroid is usually one of the first things checked when a patient exhibits the signs of POTS and despite what you might read it isnt rocket science. Although by gees my Mum's experience can attest to how hard it is to stablise and keep in check.

I have to be on synthroid as my thyroid was removed for cancer 37 years ago. I can attest to the fact that it is difficult to get to the right dose, and even if you change doses, doctors wait six - eight weeks before retesting. Things change and even medications and supplements you take can change how your body absorbs the synthroid.

[firewatcher]

My Endo dismissed hypothyroidism as a cause for POTS at my first appointment with him. He said that thyroid dysfunction is the second most treated condition in the general public after high BP. The fact that many of us have comorbid thyroid conditions is simply a reflection of the odds of this disorder in the total population. That being said, if your thyroid is off, it WILL mess with our ANS, and there is the currently being explored theory of autoimmune triggers for POTS. Research proves time and again, once you have one autoimmune disorder you are far more likely to get another one!

This all gets even trickier if you look at the pituitary and hypothalamus and their function in the regulation of the ANS. If you have some issue with either, it will effect every other system, including the thyroid. If you are hypo-pit, then TSH is an absolutely worthless test and there may be no way of gauging it's function or the function of your other endocrine organs!

It is all so very complicated what we all need are cardio-neuro-endo-rheuma-nephrologists! (I think I forgot one...)

[mcaimless]

But the idea that a masked form of thyroid disorder was behind prettymuch every unexplained disorder around in the early to late 90s has proved to be about as credible as vapours causing the bubonic plague im afraid. It was also actually quite dangerous - there was a doc somewhere that sent three CFS patients into thyroid storm if I remember correctly.

Thyroid disorders can trigger POTS and other symptoms and they are very similar. But the thyroid is usually one of the first things checked when a patient exhibits the signs of POTS and despite what you might read it isnt rocket science. Although by gees my Mum's experience can attest to how hard it is to stablise and keep in check.

I think the point of my post is that vast numbers of people are screened and written off as normal based strictly on the TSH test. I was for over 15 years. So yes, it isn't rocket science but the fact that the ranges aren't correct for diagnosing symptomatic people is a huge factor in how many people are diagnosed and treated. And if your mother has thyroid disease I'd suggest you take a pretty close look at your own labs and make sure you are properly screened instead of getting just the run-of-the-mill TSH, if you haven't already.

I've also puzzled over why the narrower ranges aren't adopted by the Big Pharma so more people will be sold medication. My only thought on this is that thyroid hormones are pretty cheap now and there are far bigger fish to fry in selling non-generic meds for other diseases. But that's just my gut feeling. I see the same thing happening with the funding for Low Dose Naltrexone research, which the drug companies won't touch because it's a very cheap generic.

[ramakentesh]

Here something ill just throw in - i read somewhere with hashimotos and graves (and i have a big family history of thyroid disorders in my family) that your more likely to also suffer M.gravis.

This is interesting when you consider the Mayo clinic study that found that some POTS patients (particularly leg poolers) had autoantibodies that were very similar to those found in M.gravis and that these were attacking the nerves that release norepinephrine in their legs causing POTS (hence the introduction of Mestinon to treat some forms of POTS).

Edited July 7, 2009 by flop

[yogini]

I have read very similar posts about other conditions that seem to coincide with POTS, such as Lyme disease. I do think, more than anything, that the medical community relies too much on conventional testing, which may not be enough in our cases. Not all POTS patients have undiagnosed thyroid issues and I would venture to guess that most don't. But there may be some that do. This is a good area to think about or investigate, especially if you have other unexplained symptoms, or aren't improving or responding to treatments.

[mcaimless]

I hope my post wasn't interpreted to mean that I think that all POTS people have thyroid disease. I certainly do not think this.

I do think that most-- if not all-- people with symptoms of thyroid disease (which can include autonomic dysfunction) who go to their doctors for answers are summarily given one very poor test to rule it out and that this is a great disservice to us all.

I started with symptoms of depression, weight gain, heavy periods and feeling cold (classic hypothyroid symptoms) over 15 years ago and my PCP did the routine TSH test that came back "normal". So I was prescribed Prozac. My symptoms continued to progress over the years, developing into POTS, autoimmune rheumatic disease and fibromyalgia and still all of my repeat TSH tests were "Normal". When I discovered the controversy about the TSH tests and looked at my old labs I found that all of my TSH labs were outside of the range recommended by AACC and my only FT4 test done was only 21% of range (should be within 50-80%), which is extremely low. Needless to say, this got my attention.

I'm still working on this for myself. My next step is to find a practitioner who will take a look at these numbers (my FT3 is about 10% of range) and work with me despite my still "normal" TSH numbers.

One thing I've also learned-- if this is of concern to you and you wish to get tested-- do it fasting in the early morning. TSH tends to go down later in the day and you need to catch it at it's highest levels (this is for hypothyroid-- I'm not certain about hyper but I assume fasting AM is the best time for that too). I didn't know this and my last round of tests is not of much use because I had my blood drawn in the afternoon non-fasting. Of course my PCP didn't advise me of this either...

[futurehope]

Here something ill just throw in - i read somewhere with hashimotos and graves (and i have a big family history of thyroid disorders in my family) that your more likely to also suffer M.gravis.

This is interesting when you consider the Mayo clinic study that found that some POTS patients (particularly leg poolers) had autoantibodies that were very similar to those found in M.gravis and that these were attacking the nerves that release norepinephrine in their legs causing POTS (hence the introduction of Mestinon to treat some forms of POTS).

Since you seem to be interested in research, I wanted to share with you that I am one of the people with a positive Achr anti-body test, which denotes a diagnosis of myasthenia gravis. The interesting (and lucky) thing about my positive titer though, is it has been that way for about 4 years (at least) and I do not display symptoms of MG. After reading your posting above, I am wondering if my "positive" MG titer is actually denoting a positive to an antibody that is not yet identified, a "POTS" antibody, if you will? Food for thought. I will mention this to my neurologist.

[firewatcher]

I also have a borderline MG titer. Not high enough for a positive, but not negative.

[ramakentesh]

Interesting. I think the theory was that similar anitbodies were some how involved in POTS - i guess through some sort of attack on the nerves that control vasoconstriction.

ive never been tested for M.gravis antibodies, but when i first got POTS i had serious eyelid lag for about 2 months - only one of them but it was so noticable that people regularly commented on it. It would get worse as the day progressed and I wonder whether there was some sort of M.gravis thing going down...

[Miriam Poorman-Knox]

Hashimotos is very common in Pots/ Dysautonomia. I can't read all the long post, but the gyst is that there are many theories. I have had Hashimotos for a long time and have been getting the appropriate tests throughout. M