Dysautonomia (Autonomic Dysfunction) Community
To those diagnosed with POTS/Dysautonomia:
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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To those diagnosed with POTS/Dysautonomia:

If you have been diagnosed with Postural Orthostatic Tachycardia Syndrome and/or various forms of autonomic dysfunction, do yourself a favor and find a new set of doctors.  All of the symptoms of your condition can be caused by various forms of endocrine and neuro-endocrine dysfunction, such as adrenal insufficiency, hypothyroidism, and hyperthyroidism, etc.  I say this because I was diagnosed with POTS/autonomic dysfunction by separate medical establishments (Christ Hospital in Cincinnati and the Cleveland Clinic), and spent the last year of my life battling this diagnosis.  I will not go into the full extent of the details, but this diagnosis nearly resulted in me dying, as I had underlying secondary adrenal insufficiency and hypothyroidism.  I was not properly diagnosed until I was on the verge of an adrenal crisis and literally told an ER physician that it was an adrenal and thyroid problem and the appropriate tests that needed to be run.  I say all of this not to frighten anyone, but to give you the opportunity to improve your health and well-being.  POTS/Dyautonomia are not diagnoses, but instead words to describe an enormous set of symptoms caused by an unknown source.  To diagnosis someone with these conditions is functional equivalent of saying, "I don't know."

Keep fighting the fight.

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I sympathize with what happened to you.  I do think most cases of POTS, and other dysautonomias are secondary to other conditions. I believe they are actually classified as either primary (such as familial dysautonomia) or secondary (such as dysautonomia caused by autonomic neuropathy from diabetes). There are other examples.

My son developed secondary adrenal insufficiency and hypothyroidism also, in 2007. His symptoms became acute however, AFTER he began replacement hormone therapy. His doctor made the mistake of starting him on thyroxine first, without a proper assessment of his adrenal function. So, because he had a pituitary cyst that was preventing release of ACTH, he had an adrenal crisis one week after starting thyroxine (the cyst had been discovered three months before he began medication). He was immediately started on a small dose of hydrocortisone, but it was too little too late.
He began having daily tachycardia, severe nausea, weakness and fatigue, bouts of both hypothermia and hypoglycemia (he was growth hormone deficient also), stomach upset and digestive trouble, occasional vomiting. His docs did not not want to add to or change his meds, and he was sick for months, before the nasty symptoms tapered off and he felt better.

Then, after an emotional trauma, he developed severe orthostatic hypotension and tachycardia, and couldn't walk for more than half a minute without squatting to prevent feeling faint. He had been squatting while walking, now and then, prior to this time due to nausea, which I assumed was because of the adrenal insufficiency. But his docs wouldn't prescribe a higher dose of hydrocortisone (he was only getting 12.5 mg daily).

After another MRI, my son's pituitary cyst was surgically removed, and he was switched from hydrocortisone to dexamethasone. Almost all of his symptoms dramatically improved afterward, but the orthostatic hypotension  and tachycardia remained.  Because his blood tests were good, his endocrinologist couldn't explain his orthostatic intolerance.
Doctor after doctor just said he was deconditioned, and needed to exercise. Well, he tried, but it's impossible to do much exercise when the slightest exertion (and I do mean very slight) causes severe hypotension and lightheadedness. He was literally crawling around the house, because upright posture had become impossible.

Almost a year later, I took him to a cardiologist to ask if he might have POTS. She decided it was very likely, partly because he is also very hyperflexable, and POTS is associated with Ehlers-Danlos-Hypermobile Type. I didn't believe he had EDS, so I took him to the geneticist next, and he confirmed that my son "met the criteria for Hypermobile EDS".  
After this, I have had docs tell me his OH is autonomic dysfunction, and I've had other docs say it isn't autonomic dysfunction.

I finally talked his endo into trying fludrocortisone, because although his serum sodium was great, his aldosterone tested extremely low. And I had been reading and researching about POTS, and knew it was one of the first meds to try for the OH.
My son had been drinking lots of water and eating salty foods. Unfortunately he looses too much potassium with fludro, so he's on a tiny dose, and it's not helping.
He is now trying midodrine also, but it makes him feel horrible and doesn't help.
I think he probably has adrenal atrophy from dexamethasone, and since adrenal insufficiency is a well known cause of orthostatic hypotension, I find it hard to believe it's not his primary cause. He does have other occasional symptoms which can be involved in both EDS and dysautonomia (difficulty swallowing, numbness, mild tremor, severe myopia, and more) but his pituitary cyst was actually a central nervous system tumor; a craniopharyngioma, so he may have CNS damage too.
It's complicated.
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I am sorry that it took so long to be diagnosed with the underlying causes of your condition. However, not all cases of POTS are due to endocrine issues. There are some non-hormonal issues that cause the symptoms of POTS. Quite a few cases have been linked to lime disease, and there are a ton of other underlying causes as well. My doctor thinks that mine is probably from a viral infection.

There are serveral issues involving the endocrine system that can initiate the classic POTS symptoms. They have linked norepinephrine, adrenaline, and cortisone. I dont think they necessarily misdiagnosed you, they just hadnt figured out yet what was causing the symptoms. I hope that you are well now and have found an endocrinologist that can help you with your adrenal issues.
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1833449_tn?1333853101
DNP47:

I agree that there are a whole host of underlying causes of symptoms that are typically classified as Postural Orthostatic Tachycardia Syndrome.  However, my point is that Postural Orthostatic Tachycardia Syndrome is not a diagnosis and should never be treated as such; as it was in my case.  Therefore, I was misdiagnosed; in fact, I was told by five separate endocrinologists that I did not have an endocrine issue.

Additionally, I was reading some of your additional posts.  In them, you indicated that you have tachycardia while laying, sitting, and standing.  By definition, that means you do not have Postural Orthostatic Tachycardia Syndrome.  It was that same realization in my case, which made me question POTS as an underlying diagnosis.  Furthermore, on what basis are your doctors alleging that your symptoms are due to a post-viral infection?  As is always the case with these absurd diagnoses, it's probably based on conjecture, with little to no evidence to support the assertion.
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2113262_tn?1346105521
I dont consider myself to have the Disease known as POTS. I use the diagnosis for what it is, it describes my symptoms.

I do have have POTS simply by definition. I agree that I have other issues as well. But here is why I believe I have POTS. If you break it down, I do have postural tachycardia because I do infact have a significant spike when I go from a sitting to a standing position (a postural change) as evidenced by my + TTT (without the use of nitro). I do have issues while sitting, laying and standing but it is significantly worse when I am standing, and stay elevated while standing. I think my issue when lying down has more to do with my SVT then it does with the POTS. When my issues start when I'm laying or sitting it is a sudden onset of rapid heart beat.

You are correct that endocrine disorders can very well cause a person to have cardiac issues. I am very sorry that your cardiac problems have taken so long to figure out, it must have been a very scary time for you and you seem very frustrated at the term used for the collection of symptoms known as POTS. I know how difficult finding a correct diagnosis is. I have been through my share of specialists, neurologist, endocrinologist, cardiologist, psychologist, electrophysiologist.

The only thing I can tell you is that POTS is not a disease as I said before. It is simply a name, a name that describes symptoms. It in no way describes the underlying cause. I am not a doctor, this is simply how I understand it.

An example that I can think of is hypertension. If you have hypertension, just describing the conditions name does not tell you why you have it. There are tons and tons of reasons behind it, it is a symptom of an underlying problem. Get where I'm going? Your hypertension could be as a result of an endocrine problem (pheo), poor diet, increased salt intake, stress, pain, arteriosclerosis, renal artery stenosis, hydronephrosis, neuro problems that would cause inability to regulate pressure and Im sure a million other things as well. However, regardless of the Cause...you still do, in fact, have hypertension.

I agree that you should not stop when you finally get diagnosed with POTS. Or, like in my example, if you are diagnosed with hypertension, because the reason WHY you are having these issues is the key in treating it. I think people should always ask WHY.

So can we agree that it is what it is? Not a disease...totally agree with you. But it is infact a real occurance to describe ones symptoms, and provide a guide in treatment.

I have blood volume issues, we know that. This is why increasing my fluids so drastically has helped to regulate my symptoms. I am glad they went to POTS way, because it guided us into a direction to find a treatment that is, for now, allowing me to live a relatively normal life. Also, since I'm pregnant I have a natural increase in blood volume of about 30-40 percent, so that could also explain my improvement in symptoms.

The doctors have speculated (and I have to say I agree with the direction they are going in) about the post-viral illness causing this because I work with the infectious disease population for my job. I had a three week bout with a viral infection (tested negative for bacterial, negative for fungi) and my symptoms began shortly after that.

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1833449_tn?1333853101
If you're satisfied with the current approach being taken to your condition, then by all means keep moving forward with it.  But I'm telling you, just by the symptoms you're describing, you have some sort of endocrine imbalance.

And no, I don't agree with the use of Postural Orthostatic Tachycardia Syndrome to describe anything, because you fail to recognize why it's being used: (1) To give a patient "answers," and (2) For insurance purposes.  That's it.  It's that simple.
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As DNP 47 says autonomic dysfunction includes many things such as adrenal problems,  heart problems,  diabetes to name a few. Not everyones is caused from endocrine problems. Mine is secondary to my MS which causes these symptoms I have. Often no reason can be found but I don't believe most drs just label patients for insurance or to give an answer for what they canteen explain.
I am very glad you found the reasons behind your symptoms. With treatment you should feel better.
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As DNP 47 says autonomic dysfunction includes many things such as adrenal problems,  heart problems,  diabetes to name a few. Not everyones is caused from endocrine problems. Mine is secondary to my MS which causes these symptoms I have. Often no reason can be found but I don't believe most drs just label patients for insurance or to give an answer for what they canteen explain.
I am very glad you found the reasons behind your symptoms. With treatment you should feel better.  In my case lesions in a certain area cause these problems.  Therefore we just have to treat the symptoms the best we can.
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1833449_tn?1333853101
Beema36:

I respect and appreciate how difficult your struggle with MS must be; especially in light of its impact on things such as heart rate and blood pressure.  Also, it's worth noting that I'm not disagreeing that there are a whole host of underlying conditions that can cause symptoms commonly classified as POTS.  

However, what I am also saying is that I don't believe medical testing is precise enough to always determine subtle problems, such as were the case in my situation.  I had five separate endocrinologists, two of which were at the Cleveland Clinic, insist that I had no endocrine issues after extensive testing; this including an ACTH Stimulation Test, which was returned as unequivocally normal.  It was not until I convinced a local doctor to treat what would have been classified as an extremely mild case hypothyroidism, due to my suspicion that there was nonetheless an underlying adrenal problem, that my Secondary Adrenal Insufficiency became apparent.  I suppose what I'm trying to say is - medical testing and doctors opinions are not always accurate.  This is especially true as the human body compensates for deficits in one area by exaggerating responses in another.  

When I was originally admitted to a local hospital almost a year ago when my symptoms became very, very apparent, the only medical test that was abnormal, other than my obvious issues with heart rate and blood pressure, was a low serum potassium; this persisted for months without any reasonable explanation.  However, you do not get chronic potassium deficiency without some sort of disease process, even if it's complex.  Additionally, DNP47 indicated that she has issues with blood volume and that drinking liters of fluids will help correct her tachycardia.  That's an indication that the tachycardia is, in part, the result of dehydration, which is commonly associated with endocrine dysfunction; in particular, adrenal insufficiency.
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2113262_tn?1346105521
I agree with you. Medical science has not caught up with diagnosing the vastly complex cardiovascular system, and other areas of the body.

Did you ever have syptoms (symptoms) of Cushings or Addisons? I am just pondering your symptoms and your condition. I am going to research adrenal insufficiency because my knowledge on that subject is vague.

My blood volume is low, and that may very well be as a result of reflex dehydration, meaning that inefficent fluid intake would not be the cause of the dehydration, but more likely a vascular issue.

Your thoughts may be correct, I guess for arguments sake I could have some degree of endocrine issues. There are also many many reasons ones potassium could be low aside from those issues. My potassium has been low as a result of my increased fluids. The increase in fluids dilutes the blood, and hense dilutes the concentration of K present in the blood stream. But I will keep you advise in mind and I will certainly research endocrine issues that could be linked to my current problems.

My insurence has not been billed specifically for POTS. Actually, they list my condition as dysautonomia and SVT. They have no classification or specific reembursement for the condition.

I came to this forum because I was looking for a supportive community to share my thoughts and get others opinions on their progress. I hope that you will continue to update on your condition because I think the more information we can get the better. I have learned a great deal from your post and your struggles to find answers. I hope that my advise to others (my non-medical opionion of course) about what has worked for me has not offended you in any way. I simply think that hearing from people actually suffering from these types of problems is much more valuable then what you read on wikipedia, or even from the doctors who claim to specialize in the area.

I wish you continued success on your road to recovery.
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1833449_tn?1333853101
DNP47:

I apologize if I came off far too strong regarding these issues; that's probably the former law student in me.  I think what I'm trying to do is to empower other patients to take their health into their own hands by thinking critically about their experiences and not necessarily accepting what doctors tell them.  

As it relates to your question about adrenal insufficiency, there are three types: (1) Primary, which is also known as Addison's Disease, and is caused by an autoimmune disease which impairs the function of the adrenal glands; (2) Secondary, which is caused by a failure of the pituitary gland to properly stimulate the function of the adrenal glands; and (3) Tertiary, which is caused by a failure of the hypothalamus to stimulate the pituitary gland to stimulate the function of the adrenal glands.  There are a number of distinctions between the three in terms of what hormones are deficient, as a whole host can be impacted.  However, the one constant is that with each condition, the production of cortisol by the adrenal gland is impaired.
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Well we have something in common, I am former pre law (switched majors before I took the law school plunge). Ironically, I wanted to presue either medical malpractice law, or patton law (yes I know, boring)

I appreciate your explaination of the adrenal insufficiency, so it is kind of like disease of the thyroid yes? I know that thyroid hormone can be affected the same way by and over producing/underproducing pituitary or an under/overstimulating hypothalamus. Oh how I love me some neurological system politics. I knew about the primary conditions of the adrenal system, but the secondary and tertiary are news to me. Now you have got me intrigued, and I am off to study the exciting world of the neuro/adrenal system pathophysiology.
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I've been your posts/conversation (with DNP 47) and I find it very helpful to me.  I've been experiencing different symptoms (like what both of you have) for 4 years now... and until now, I still don't have a definite diagnosis...

What DNP 47 said is true, that reading forums like this is more helpful and informative than what you read in other websites that will just give you factual and intellectual information rather than experiential and real examples found in the posts of persons who are experiencing the real existing problems. That's why I thank you both for sharing  very informative and generous thoughts about what you think and what you have experienced.

I'm actually thinking if I have dysautonomia (POTS specifically) and at the same time also considering adrenal disorders (since i've been experiencing what they called adrenal fatigue and have been very affected physically by hormonal concerns).  I am currently seeing a cardiologist since i have been having high blood pressure for the past 4 months.  My cholesterol level and kidney are fine, I don't have diabetes as well.  

I am scheduled for a tilt table test, echocardiogram, 2D echo doppler, stress test, holter monitoring, blood chem tests, thyroid tests, and the one i think for the adrenal concern the renin and aldosterone test where in i have to walk for 4 hours upright before they extract blood from me (i find it ridiculous to stand and keep walking back and forth for 4 hours for i know that i will faint or feel dizzy and very weak in doing that in less that an hour, since I can't even stand walking for 30 minutes in mall or supermarket without feeling dizzy). Well, goodluck to me with all these tests...

Again, thanks to you Charbt and Dnp 47 for the information you've shared.  Will share to you the findings once I'm done with all the tests.  God bless you and may you continue to live a life of wellness despite your conditions.  Besides, what are these illnesses in comparison to our sovereign, most powerful, almighty, and loving God.  With Him, nothing is impossible... He is our great healer... we may be physically ill , but we can always be healthy in perspective (and in practice ) knowing that God who wants nothing but the best for us is in control simply because He loves us.   And that is where our wellness counts, to still live our lives to the full even with the littlest thing we do or accomplish (with of course a healthy lifestyle and diet) despite our conditions. :-)
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Thanks to you too, Beema36, for sharing pertinent information in this conversation.  It also helped. My prior message is for you too. God bless. :-)
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interesant
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I had a pituitary tumor at one time and had a pretty thorough work up, which included an ACTH stimulation test- came back normal.  My thyroid function- normal.  I do not have diabetes.  I think I had low aldosterone and renin before, but not all the time.

My GFR is a little low for someone of my age, but my doctor is not concerned, and my 24 hour urine sodium level would suggest hypovolemia (blood sodium- normal).

I was diagnosed with POTS via the tilt table years ago.  They told me it was often hereditary, coming out in the third decade of life.  I learned later I have a cousin who was also diagnosed with the same condition.

  I am currently struggling with losing iron, though I am usually not to the point of iron deficiency anemia.  I'm noticing lately in the morning my pulse pressure is extremely close.  Planning to monitor it more.  I also have had abnormal numbers with catecholamines and their inactive metabolites.

I have other conditions besides POTS (where I have had orthostatic blood pressure spikes in the past) considered to be in the family of dysautonomia- IBS, GERD, IC, and migraines.
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I don't know if this discussion is active.

My case : Borderline hypo numbers ; Hashimotos, Adrenal insufficiency (low morning and noon cortisol numbers through diagnostech lab saliva testing) AND hypoadrenia / POTS / Ferritin issues.

POTS and endocrine issues overlap if the endocrine glands related are greatly associated with the HPA axis mainly thyroid/ adrenal with some cases of pituitary.

Till today (10+ years of research as a patient and been to numerous doctors), the only combination which worked for me to live my day for aleast 6 hours of fulfillment was : HC / Pyridostigmine, later on added Thyrotropin PMG (standard process) and a beta blocker. Ofcourse with a bunch of supplements including betaine HCL.
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875426_tn?1325532016
I'm glad you have found a medicine regime that is helpful in you having a better quality of life!
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