mcaimless

The rheumy should check you for fibromyalgia tender points if he knows what he's doing. Generalized widespread pain is often fibro. It is common with dysautonomia and often can be a result of poor thyroid function. If he determines you have fibro then he'll try to prescribe the usual fibro drugs, Celexa and Lyrica. I would recommend you get a good thyroid workup, including Free T3, Free T4 levels, thyroid antibodies and check your adrenal function with a saliva cortisol test before succumbing to the meds though-- they seem to work for some but not all and they have high side effect profiles like weight gain. Do your homework first, BigPharma loves to sell drugs for conditions that are often an offshoot of poor endocrine function, which is extremely common and treatable by simply replaceing hormone deficiencies.

My underlying cause of POTS was long-undiagnosed hypothyroidism. I too went to the muckety muck autonomic specialist at Harvard and was told I had POTS, now learn to live with it . This went on and on until I eventually developed fibromyalgia and RA-like symptoms. It wasn't until I noticed Mary Shomon's articles about what a lousy diagnostic tool the TSH is for screening for thyroid disease that I finally caught on. I strongly urge everyone to get their Free T3 and Free T4 levels tested as well as the antibodies for Hashimoto's disease. Doctors don't even know how to correctly read Free T test results so you must also demand treatment if your levels are below the top third of range. I've had numerous TSH tests done and all were "normal" but when I had the actual thyroid hormones tested with the Free T tests, I was at the bottom of or below range. Now I'm having enormous improvement with my natural thyroid hormone treatment. I highly recommend Janie Bowthorpe's website and book, Stop the Thyroid Madness for more information about thyroid and adrenal dysfunction and how to treat them correctly. http://www.stopthethyroidmadness.com/ It's a real shame that doctors don't know how to properly screen for this enormously common disorder while the health consequences for going undiagnosed are enormous.

Most are going over to Nature-throid by RLC Labs. Unfortunately Armour has been messed with by its manufacturer, Forest Labs, to the point where its long-time users are going hypo in it. Also Armour is getting very scarce. I strongly suspect Forest is planning to discontinue it in favor of their synthetics. This is a shame as it's the most well-recognized brand of NTH out there and had a huge following. There is also a very good product calle ERFA Thyroid from Canada that can be purchased online. But I can get Nature-throid at my local pharmacy and my insurance covers it. I did have to talk to the pharmacist and tell him I needed a good supply and while it was a little slow coming at first, I'm not having any troubles now. I wish you luck. I had a lot of problems with stress intolerance too, the slightest thing would set me back tremendously, literally make me feel sick. I think it's because my stress hormones were somewhat high from trying to compensate for my lack of thyroid hormones. I'm finding I'm evening out now and my brainfog is lifting (at last!). Also, you can scroll down when replying to see the posts before yours if you are trying to remember what someone said. It helps me a lot!

I would suggest you ask for a Free T3 and a reverse T3 (RT3). If the actual levels of T3 are low (or your RT3 levels are high) you could still not be optimized on your thyroid meds. The symptoms you describe often are a result of this. I have POTs, palps and orthostatic issues as well as mind-numbing fatigue and found after much searching that this was a result of my hypothyroidism. My Free T3 and T4 levels were very low and they should be in the upper third of range. There are a lot of people who are burning out on T4-only meds like Synthroid. With these meds your body is forced to convert the T4 into the T3 you need for your metabolism, whereas if your thyroid were still there it would be producing both T3 and T4 (as well as other hormones like T1,T2 and Calcitonin). The makers of Synthroid and other synthetics have a lot of influence (and $$$ to influence doctors) and have basically re-written the endocrinology clinical guidelines to exclude the natural thyroid hormones (NTH). But, despite this, there is a large groundswell of people who are getting sicker on synthetics going over to that treatment. NTH contain all the same hormones that our thyroids produce and it just makes sense to me to replace like with like here. Long term use of synthetics tend to burn out adrenals as well because if you are low in T3 your adrenals put out more cortisol than they normally would to try to keep the metabolism working and they become fatigued as a result. I am willing to hypothesize that many cases of POTs and dysautonomia are due to adrenal fatigue and hypothyroidism. I think it would be great if everyone here would get the correct screening for thyroid and adrenal issues to rule it out effectively. It's absolutely amazing how many people are undiagnosed for this condition, some estimate it's in the millions. I highly recommend the Free T3, Free T4, and the thyroid antibody tests (for those who still have a thyroid) TPO-Ab and TG-Ab. Most of us are screened with the TSH only but this is not a reliable indicator of our Free T levels. I was aways "in range" with my TSH while my Free T's were very low and I had many hypothyroid symptoms that cumulated in dysautonomia, fibromyalgia, joint pains and many other disabling conditions. Now that I'm on therapeutic levels of NTH I'm seeing a lifting of all these things. Did you get your vitamin D, B12, and ferritin levels checked recently? Often we have problems absorbing these vitamins and minerals from food and sunlight and most of us are deficient. It's really important to keep an eye on this too if you haven't already. B12 should be well up over 550 (closer to 800 is best) and D should be over 50. Ferritin should be in the upper half of range. I live in Arizona and have a tan and was astonished to see I was actually below range in vitamin D.

I'm sorry, I didn't see on your meds list that you were taking synthroid. I just looked at your dx list and didn't see hypothyroidism. I'm a little curious why you took the saliva test, are you experiencing symptoms? I understand you have high Free T4 levels but have you tested Free T3? Free T3 measures the free or unbound T3 as opposed to the Total T3 (Total T3 is more an approximation of T3 levels). And have you tested your reverse T3? These can all be pieces of the puzzle that might help if you are experiencing hypo symptoms. I do wholeheartedly agree that symptom relief is the key to determining how much thyroid hormone is the right level and you are smart to keep a log of your labs with your symptoms. Many people don't do well on synthroid or synthetics over the long term, hence why I recommended Stop the Thyroid Madness. If you have high levels of FT4 it could mean you are having troubles converting and the long term use of T4 can stress adrenals as well. I have had saliva cortisol tests as well. The first was with Diagnos-tech which turned out to be a bad idea because the results were bizarre, my evening levels were 20x the high range. I read since that they are not recommended for testing due to uneven results. I then restested with a ZRT test and had slightly above range in the AM but middle of range the next three times. This was a relief as I didn't want to have to treat my adrenals as well.

If your cortisol levels are low or below range at any time of the diurnal cycle it's indicitive of adrenal fatigue. One very common reason is undetected thyroid disease. When the thyroid isn't producing enough hormones the adrenals will kick in and produce more cortisol to try to keep the metabolism running as it should. Eventually they get fatigued and you will see dips in the levels or even increases as they try to keep up with both metabolic and stress demands. Most doctors do not effectivly screen for hypothyroidism. TSH is a bad test because not only are the ranges not correct (truly normal TSH should be between .3 and 1.5-- but even this is not truely useful if the patient has hypothyroid symptoms or Hashimoto's disease). TSH is actually a test that measures pituitary function, not thyroid. To really find out if you have hypothyroidism you need to have a Free T4, Free T3 to get the level of your actual circulating (or "free") thyoid hormones. These levels need to near the top of range to be at a therapeutic level. Most people are tested and are in the bottom half of range and proclaimed "normal" by their doctor, when they actually are very hypothyroid and need treatment. Failure to treat both adrenals and thyroid will have very serious long-term health consequences, including heart disease, depression, dysautonomia, infertility, etc. If you have adrenal fatigue you should treat with hydrocortisone at physiologic dosage to give them a rest and allow them to heal and then start with thyroid treatment. If cortisol is low, thyroid hormones will not be able to transfer from the blood into the cells where they need to be. If you are taking Florinef it will skew your saliva cortisol test and produce a false high reading. One needs to be off all steroids before taking the test. There's lots of good info about adrenal fatigue and thyroid at http://stopthethyroidmadness.com

I have done a 3 month trial of LDN (mostly for my fibromyalgia) and am now discontinuing, mainly to see if I worsen in any symptoms. The benefits, if any, have been very slight for me and it's hard to tell if these are normal variations in my usual symptoms. There is a recent Stanford study that showed good results for fibromyalgia patients and there is a lot of anecdotal evidence that it works well for Hashi's (but if taken for Hashi's along with thyroid replacement, one must be careful as the thyroid can start functioning well again and there is a risk of over medicating, so the meds need to be backed off accordingly) I have never tested postive for Hashi's antibodies but I am very low in T3 and T4, thus hypothyroid. I am currently taking Nature-throid desiccated porcine hormone replacement. Armour Thyroid has been the natural thyroid hormone of choice for many, many years but unfortunately Forest Labs, it's maker, has royally screwed up in many ways. First they made many dosage sizes unavailable for months and then they reformulated and the new product is not working. People who have taken Armour for years or even decades are now experiencing hypothyroid symptoms and their bloodwork shows much lower T3 and T4 levels. Forest is not owning up to any of this but all the natural thyroid advocates like Mary Shomon and Janie Bowthorpe are urging the switch to RLS Labs' Nature-throid or Westhroid (Nature-throid is hypo-allergenic, which Armour was not, so you might want to give it a try). I have no problem with a porcine derived product and with its processing and USP regulated purification, there is no possibility of swine flu. Thyrolar is a synthetic, also made by Forest Labs that combines T4 and T3 and if one cannot tolerate natural thyroid it's a good alternative. It does not have all the natural trace hormones produced by our own thyroids like T1, T2 and calcinonin. http://www.stopthethyroidmadness.com/armour-vs-other-brands/ http://www.ldninfo.org/

Canary Club is just another place to buy OTC adrenal tests. The tests are by ZRT (which is a good lab) but they offer the best pricing, better than buying from ZRT direct. No cost to join, just set up an account. Not all states allow OTC saliva tests without prescription but most will. The diurnal cortisol test is considered a good one for overall adrenal function. Your endocrine system encompasses both the thryoid and the adrenals to maintain your metabolism. Cortisol from the adrenals is necessary to facilitate the active thyroid hormone, T3 to pass from the blood into the cells. If you are deficient in cortisol you will have hypothyroid sympoms even when you suppliment with thyroid hormones. Therefore it's recommended to treat any adrenal problems before starting thyroid hormone replacement. Many do very well with natural thyroid hormone for Hashi's. And it's agreed that you need to get the replacement amount high to shut down the thyroid and help stave off the antibody attack. Stop the Thyroid Madness recommends that natural thyroid hormone be raised to the alleviation of symptoms, and that thyroid hormone level labs are largely useless for monitoring. Selenium is a good suppliment to take as it can lower antibody levels. There is also very good anecdotal evidence that the use of Low Dose Naltrexone is working for Hashi's by modulating and repairing the immune system dysfunction. Natural thyroid hormones also replace trace hormones your body needs for good metabolic function, like T1, T2 and calcitonin, which is good for bone health. Synthetic hormones are only T3 or T4 and not considered a good long-term replacement for thyroid hormones by many. Long-term use of T4 only meds can cause adrenal fatigue and actually make people sicker in the long run. This is, of course, the point of view by the natural thyroid homone proponants. The synthetic hormone proponants say that their way is best, and most mainstream endos refuse to even discuss natural thyroid with their patients. Unfortunately there aren't any good studies comparing the two in the long run. Natural thyroid is very cheap and there's no money in it for Big Pharma and the studies they have funded are very slanted and poorly done. And Big Pharma, in particular Abbott Labs, the makers of Synthroid, has pretty much hijacked the entire thyroid hormone market and funds all the major endocrinology societies, including the American Association of Clinical Endocrinologists (AACE).

Have you checked your adrenals? The most common reason people don't do well with thyroid replacement is adrenal fatigue, usually brought on by untreated or poorly treated hypothyroidism. Get a saliva test and make sure you are producing enough cortisol-- if you are low in cortisol you will not be able to get the thyroid hormone into the cells. This results in the hormones building up in the bloodstream and cause hyper-like symptoms you are experiencing (it's called "pooling"). I found the best price on saliva cortisol tests are through the Canary Club. I also highly recommend Stop the Thyroid Madness as a good guide and treatment protocol for both thyroid disease and adrenal fatigue. http://www.canaryclub.org/home-test-kits/our-test-kits.html http://www.stopthethyroidmadness.com/hashimotos/

A couple of things (and yes, I do have POTS too), have you checked your adrenal function? Since you are on T4 as a medicine, you might be fatiguing the adrenals when your body is attempting to convert the T4 to T3. This causes what is called "pooling" (not the same as blood pooling with POTS) where you are dumping a lot of thyroid hormones because cortisol is low and it's vital to getting the hormones into your cells. The adrenals are best tested with a saliva cortisol test (I get mine through the Canary Club) Also have you checked your free T3 levels? If your T4 is high and T3 is low then you are having problems converting. This might be from either the type of medication (synthetic T4 instead of natural desiccated thyroid), high cortisol from stresed adrenals, or due to vitamin deficiencies, especially D, B12, or Ferritin. These are all necessary to bring up to proper levels to get the hormones into the cells. If you have Hashimoto's (were you ever tested for antibodies?) you can swing from hypo to hyper symptoms (hence the fast heartrate) and this requires some pretty agressive treatment with hormone replacement to get it under control and reduce the antibody attacks on the thyroid I chose to go with desiccated thyroid as my hormone replacement. It contains both T4 and T3 and several other hormones that more closely match what our own thyroid puts out. I think it puts less stress on the body and the reports of those using it are pretty strongly in favor. Many are started out on synthetic T4 since that's what most doctors will prescribe but don't stay well on it for long. I really recommend Stop the Thyroid Madness as the most sane approach to treatment. I hope this helps, feel free to PM me if you have any other questions. Check out the STTM website for a ton of info: http://www.stopthethyroidmadness.com/

One of the most common reasons for hair loss is thyroid disease. I know some here have already been diagnosed but for those who are not, it's possible that you are being told you don't have a problem when in fact you do. Any doctor who only runs a TSH test to screen for thyroid disease is not practicing good medicine. Literally millions are being underdiagnosed and untreated as a result, with very serious health consequences. I recommend you rule out thyroid disease properly by getting the following tests: Free T3 Free T4 Thyroid antibodies: TPO-Ab, TG-Ab TSH And don't let your doctor just tell you you're in range and normal. If you are not at the very top of the Free T ranges you are deficient in thyorid hormones. Anyone higher than 1.5 TSH is also suspicious for thyroid disease. I went a very long time undiagnosed and am finally getting proper treatement. I hate to see others go through what I went through because so many doctors are seriously uninformed about this very common disease. http://www.stopthethyroidmadness.com/

Firewatcher-- your diagnosis mention Hashimoto's. Are you being treated for it? Most are not and are suffering needlessly. Please do check out this site and see if this applies to you-- Hashi's is treatable and you could possibly be feeling a whole lot better! http://www.stopthethyroidmadness.com/hashimotos/

Have you had your vitamin B12 tested? I just did mine and when it came back "in range" at 377 I thought everything was fine... until I read further and found that the lab ranges are bogus. In fact my levels are very, very low and the bottom of range that was recently adopted by the Japanese is 550. The reason I'm mentioning this is because "nerve shocks" and what you are describing are mentioned in the list of B12 deficiency symptoms. I suggest you check it out: http://en.wikipedia.org/wiki/Vitamin_B12_deficiency

I'm not sure if insurance will cover any saliva tests. If you go to a dr who will give you one (as opposed to ordering one online) then it may be covered as a lab test but that's iffy. Too bad they didn't do your Free T3 and your antibodies tests. Being cold and low body temp is classic hypothyroid stuff. But when you get your Free Thyroxine (T4) back take a look at the number and see where you fall in the range. If you're below 50% then you need to insist on getting the correct tests or find a doctor who will order them (the realthyroidhelp forum has a Dr list and you can post your labs there for the "experts" to give you feedback on). Again I'd really do the saliva test if I were you. If you are in adrenal fatigue you are going to feel pretty bad until you get it fixed.

Ruekat, what exactly did you get ordered for the "full thyroid profile"? Some of the tests are very outdated even though they are still being used and if you have Hashimoto's then the TSH is useless. Make sure that they've ordered a Free T3 (FT3), Free T4 (FT4)and the thyroid antibody tests: TPOAb and TGAb. And when you get your results back, please don't necessarily accept the Dr's opinion that your results are "normal". You Free T3 need to be at the very top of range, not just "in range" and your T4 needs to be at 50-80% or range. TSH is not an accurate way to measure thyroid function since it is a hormone put out by the pituitary, not the thyroid. The FT3 and FT4 are the thyroid hormones that are circulating in your blood and are what you need to monitor instead. Your symptoms can be signs of Hashimoto's which include both hyop and hyper thyroid signs like weight loss and cold intolerance. Have you taken your temperature? Low temps are also a sign of thyroid disease. I would strongly suggest you get your adrenals checked as well with a saliva test. You can order one online for around $140. A lot of your symptoms sound like adrenal fatigue too, which can go hand in hand with thyroid disease. Here is a place to look for more info and additional recommended tests: http://www.stopthethyroidmadness.com/recommended-labwork/ Good luck!

Maxine: Hypo/hyper thyroid symptoms are very simliar to POTS and other autonomic dysfunction and could actually be causing many of your dys symptoms. If you don't feel like you are doing well on your T4 only treatment you might want to consider trying to find a Doc who will put you on dessicated thyroid instead. Many are not doing well on Synthroid after a while and T4-only meds tend to put a huge strain on your adrenals and causes a whole host of problems. I strongly suggest you get Janet Bowthorpe's book and/or read her website to get another point of view about this. It makes sense to me that it's better to treat thyroid problems with the full host of thyroid hormones that Armour or Naturethroid have rather than the T4 only (T4 isn't the active hormone that actually goes into the cells, it has to be converted to T3 first and many aren't able to do this well). But, again I stress that you should check your adrenals as well because long-term T4 only use can cause them to become fatigued and you have to deal with that before you will feel better. The best way to test the adrenals is with a saliva test. I've also heard good things about Low Dose Naltrexone being used for Hashimoto's as well. There aren't any studies out about this use for it (again, it's not anything Big Pharma is interested in since it's a generic) but a trial of that wouldn't hurt if you can find a naturopath to prescribe it. http://www.ldninfo.org/

Armour Thyroid was reformulated in 2009 and there are LOTS of complaints out there about it. Now everyone is switching over to Naturethroid or other brands. Forest Labs that makes Armour claims they've only changed the fillers but there are postings on the realthyroidhelp forum where people have posted their labs before and after the reformulation and the differences in their T3 and T4 levels are marked. Are you familier with Stop the Thyroid Madness website and book? Janet Bowthorpe has a protocol for Hashi's and using desiccated thyroid and it might be useful for you. Also, have you checked your adrenals? If your adrenals are fatigued (as they generally are with people with thyroid disease) then you are not getting the thyroid hormones effectively into your cells. That's is the number one reason why people who start out on Armour or other meds don't do well because once you take the meds you will have more circulating hormones but they aren't going where they need to go. You must treat your adrenals first and get them functioning right before you can treat your thyroid. Here are some helpful sites. Hope you get this figured out and start feeling better! http://www.stopthethyroidmadness.com/hashimotos/ http://www.stopthethyroidmadness.com/adrenal-info/ http://www.stopthethyroidmadness.com/armour-vs-other-brands/

As we say in Arizona, it's not the heat, it's the humidity I don't mind heat but humidity really kills me. I see on your list of diagnosis that you have a thyroid nodule... have you been correctly worked up for thyroid disease? Have you had your free T3 and free T4 and thyroid antibodies checked, as well as a saliva cortisol test? With a nodule and no appropriate T3 and T4 treatment it's very likely you're suffering needlessly. Please check out http://www.stopthethyroidmadness.com/ and then find a doctor who will order the right tests and don't just let him interpret your results, post them on a thyroid forum to be sure you are not actually out of whack with your hormones. http://forums.realthyroidhelp.com/viewforum.php?f=14 Good luck and I hope you feel better soon-- and get that AC looked at!

Low ferritin is a very common sign of hypothyroidism, as is hair loss. Have you had all the thyroid bloodwork done? Are you already diagnosed and being treated for hypothyroidism? If so, are you only getting T4 treatment? Please check out this post: http://dinet.ipbhost.com/index.php?showtop...&hl=thyroid Also an excellent website for those with undiagnosed or undertreated hypothyroidism: http://www.stopthethyroidmadness.com/

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...

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.

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/

I really think that the fibro/dysautonomia/autoimmune thing is a chicken/egg cycle that nobody has any real answers to . My personal theory is that fibro/cfs is an offshoot of other disease processes, be they viral, bacterial, autoimmune, or damage from other stressors on the body. I did NOT want a fibro dx at all, I thought it was bogus and a trashcan as well, but the more I've researched it, the more I see that it is a very valid and even fascinating syndrome. And my signs/symptoms definitely fit it to a tee. When I first got sick with POTS one of my husband?s colleagues, an ER doc at a hospital where he worked, suggested that I had either CFS or fibromyalgia. I was outraged because I certainly had no pain issues at that point and could see no correlation at all. She just replied that she had treated thousands of FMS/CFS patients and that my presentation was very typical but if I didn?t believe it then that was my choice. Then slowly I started to accumulate more and more of the FMS symptoms, over the course of a year and a half until I had to face the fact that I was probably wrong here (certainly not the first time as it happens?) I also think that many autoimmune diseases like AS, RA, Lupus, etc can overlap and the pt presentation does not fit into the classic pigeonholes. All you can go with are the ones that seem to fit the best in your particular situation. In my case I've had numerous x-rays and MRIs of my spine, SI joint and many of my joints. Since one of the defining criteria for RA is synovitis in the MCP joints and this was a definite presentation, this is what seems to fit the best in my case. For me, finally feeling comfortable with a dx was crucial to moving on towards working towards a treatment that will do more than just placate my symptoms. I?m not much of one for band-aids even though I realize that often we do need them if we are to maintain any functionality in our lives. I think that all of these syndromes and diseases stem back to a dysfunction of the immune system and that is why I am exploring the immune modulating use of the drug low dose naltrexone LDN). Many of us here question the why?s of how we got sick. Why did I get POTS? Why RA or AS or any other diseases? I?ve always thought that autoimmune disease was caused by an overactive immune system that attacked the body. I now think that this is only partly true. A differing theory is that the immune system in autoimmune disease is actually weak and ineffective. And that in autoimmune disease the body?s innate ability to keep autoimmunity in control is defective or inhibited. It?s now thought that a weakened immune system cannot launch an appropriate immune response. Instead the immune response is erratic and ineffective which leads to continuous targeting of self rather than foreign antigen. For me, this seems to make a lot of sense and is why repairing the immune system is key to actually arresting and recovering from most disease. I?ve been in touch with the researcher at an ongoing study at Stanford on LDN for fibromyalgia and there should be a paper published soon, which he believes will encourage more doctors to prescribe LDN for fibro. Here?s to hoping?

Nantynannie: "Personally, I think Fibro is diagnosed when they can't figure out what you really have. I think many Fibros have dysautonomia and/or a connective tissue disease that does not fit into the doc box." Interesting idea but in my case anyway, I have the classic fibro signs and symptoms; multiple tender points, brainfog and cognitive dysfunction, extreme fatigue, IBS, migratory pains, etc. As I said before, these were present in part when I started my dysautonomia and POTS but they progressed while the ANS dysfunction leveled out and the POTS is only a sometime thing now. So in my case the dys preceded the fibro and was very disabling and led me down many wrong alleys for quite some time. I also started having bilateral joint pain and inflammation that did not fit into either fibro or the classic RA setting and except for a mildly elevated CRP I was completely seronegative for the usual suspects for inflammatory arthritis or connective tissue disease. It took me practically demanding an MRI of my hands to finally get evidence of MCP synovitis that finally convinced my rheumatologist that I have an inflammatory artritis as well as the fibro. It was a very long uphill battle and now that I've finally gotten the dx I am more focused on the best possible treatment plan for me. I have a female friend with both AS, Lupus, and fibro so we can have any combination of many of the autoimmune diseases that are accompanied by FMS/CFS syndromes. I like to say that while the RA is concering for me, the fibro has really kicked my butt.

Just curious, have you ever been worked up for Fibromyalgia? Fibro accompanies many autoimmune diseases and very often presents first with dysautonomia. There's a lot of stuff out there about the connection of fibro and ANS dysfunction. My dys symptoms came on over a year before I presented with the classic fibro symptoms. I also have RA.