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New Here - Undiagnosed, but Wondering...


RunnerGirl
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...could this be dysautonomia?!

I'm a 33-year old female recreational marathon runner. No known health problems other than hypothyroidism. Starting having bouts of sinus tach at rest - sometimes with frequent PACs, just to spice things up - a little more than a year ago. Episodes would sometimes be accompanied by feelings of unexplained nervousness/anxiety. Sometimes not. At the same time I started training with a heart rate monitor, and noticed that my HR would soar immediately upon commencing exercise and also generally be too high given my level of exertion. *But only on some days.* Other days, it would behave normally. Fortuntately, it was "acting up" for my exercise stress test. I completed the 5-stage Bruce test with no problems (HR reached 195 and BP was 150/85 at peak), but the cardiologist noted that I had a "a sinus tachycardia that seems above that expected for such a fit and conditioned young athlete." In short: excellent exercise capacity, no ischemic changes - but rate is high. After consulting with an eletrophysiologist in her group on my case, my cardiologist concluded that it was likely I was born with an oversensitive sinus node. This explanation did not sit well with me - because the onset of these symptoms was just in the last year - and it did not explain why I would be fine one day and "off" the next. It also didn't seem to address the anxiety component.

Concurrent with a cardiac workup - that included the stress test noted above, numerous EKGs - all normal except for some showing a rather pronounced sinus arryhthmia - an echo (normal) and an event monitor showing sinus tach and nothing more sinister than PACs - I also underwent a rather extensive endocrine workup. My thyroid had reverted to hypo when these symptoms first presented themselves, but they have continued even as I returned to a euthyroid state. I was also worked up for pheochromocytoma several times, as I also experience labile blood pressure and night sweats.

I should also note that I have been seeing a psychologist almost since the beginning of this process. Of course, panic attack was high on my cardiologist's differential diagnosis list - at least until she saw the inappropriate sinus tach on my stress test. Knowing the history and presentation of my symptoms, my psych has always believed as I that this is not being caused by a primary anxiety disorder - though I will be the FIRST to admit that my symptoms have CAUSED me a great deal of anxiety.

I will go for periods (days, sometimes weeks) where everything seems normal - my RHR in the evenings will dip to the 40s (where it should be for an endurance athlete) and my heart will respond appropriately to excercise. Then, I'll go through a period (several days) where everything is off - the HR will be 20-30 beats higher than where it should be given a particular level of activity. The simply act of climbing stairs will send it to 170 or so. No pain or SOB - just a real "hair trigger" response.

Does this sounds like inappropriate sinus tach (IST) or some other form of dysautonmia? The latter was suggested to me by both an electrophysiologist and the pheo expert I consulted, once it was determined that my adrenaline levels were, in fact, normal. My understanding is that in this condition, one has an ABNORMAL response to normal levels of adrenaline, whereas pheo involves a normal response to ABNORMAL levels of adrenaline. Oversimplification, I know, but that's the way it was explained to me. What I fail to understand is why this sensitivity is present at some times, and not at others. If one has IST or a hypersensitivity to adrenaline, must they have it chronically? Or can it wax and wane as mine does? I wouldn't describe my events as "episodes" - but clearly I have good days and not so good ones. Also, I thought that fatigue and exercise intolerance were hallmarks of IST. The high heart rate doesn't seem to seriously impair my exercise tolerance, though I obviously run stronger on my "good days."

Would be very grateful for any insights some of you with confirmed diagnoses could offer. I've been to dozens of doctors - including a $14,000 workup at the Mayo Clinic - and never once did anyone mention POTS or dysautonomia there. But the more I read, and the more doctors rule out organic causes, the more I believe this is what I suffer from.

Many thanks!

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Runnergirl, I used to be very active (though not like you are) before I came down with this. It sure seems that when they rule out all other possible causes of your body acting strangely, it comes down to autonomic issues. Yes, I am definitely different on different days, but in my case I can usually attribute it to doing too much the prior day or taking a certain medicine with a stimulant in it, or eating too much chocolate, or eating a large meal or the hormones being off. I was diagnosed with a tilt table test. Maybe you should request that test?

If you do turn out to have autonomic issues, they certainly can be unpredictable. But you learn to live with it and do what you can. Welcome to the forum!

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Thank you for your response, Futurehope. I am actually going to the NIH next week for the first round of tests under their "pseudopheochromocytoma" protocol. I clearly have some sort of hyperbeta-adreneric sensitivity going on, though I (thankfully) have no biochemical evidence of a pheochromocytoma (adrenal gland tumor). My understanding is that they rule out other causes of a patient's symptoms, including dysautonmia, so hopefully I will have the appropriate testing done there. I also believe NIH has a protocol studying various dysautonmias, and it would possible for me to be referred out of the pseudopheo testing and into the dysautonomia testing if my symptoms are indicative of this. I'm keeping my fingers crossed. I'm just so desperate for a diagnosis.

I'm sorry to hear this syndrome has taken a toll on your activity levels. For me, the physical symptoms have been tolerable, but I haven't felt myself in about two years. In addition to the wild swings in HR and BP, anxiety, and night sweats, I have had insomnia and strange hot flashes. My extremities are chronically cold - I always chalked that up to being hypothyroid and/or having a relatively low body fat. But now I'm wondering if I have poor temperature regulation related to a disturbed ANS.

Again, thanks for welcoming me. I hope you can get back to your previous activity levels at some point. Running will wipe me out on bad days, but it still has helped keep me sane during this journey!

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If you think that it might be dysautomia, several tests would be warranted: a tilt table test, a total blood volume, as well as checking cortisol (a two part test) and catecholemines. This section of the DINET site may be of some use:

http://www.dinet.org/how_is_pots_detected.htm

you should bring up your concerns with your doctor, and if he/she is unfamiliar with the various ANS disorders, you might want to try for a doc from the DINET physician's list http://www.dinet.org/physicians.htm

the NDRF medical network

http://www.ndrf.org/physicia.htm

or the autonomic society's list.

http://www.mc.vanderbilt.edu/gcrc/aas/

Nina

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Nina,

Thank you so much for the very informative links. I see that Dr. David Goldstein at the NIH is one of the lists noting doctors with specialities in ANS dysfunction. I believe he's also involved in the pseudopheo work at the Institute, so I think I'm heading in the right direction by going to NIH.

I know at least one of the tests you mention - catecholemines - will be performed as an initial screen when I get to NIH next week. I've had several plasma metanepherine tests, but never the plasma catecholemines test.

Again, thank you for taking time to post to a newcomer with such helpful information.

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Runnergirl, I'm one of the people on this forum who has had the initial workup at NIH (back in January). You may want to do a search on NIH to find out the info already written here. Also, yes, NIH could give you a lot of information when they're done (after the 1 week protocol) but they will not treat you. You still have to find a doctor to help you, but of course, having the info from Dr. Goldstein is a great start.

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I wonder since you're not feeling nauseas or some of the other distinctive POTS symptoms if that's not what you have. My aunt has had alot of the symptoms you've described including coldness of legs and feet , she's lost some sensory nerves in her legs and they are just now finding thyroidism to be a problem also! I've done some reading on her behalf and from what I've read maybe you should do some checking into sensory neuropathy. Also a autonomic disorder but affects a different part of your system. I'm not a DR so I cant begin to diagnose but it sure sounds the same as what she's going through. Even though your thyroid is under control now it could've done some damage already. You sound like a very intelligent person and I wish I had done more research on my own before diagnosis. I had never heard of POTS until I had been through 5 different specialists and alot of tests to rule out other things. Good Luck to you in your search and I hope you don't have POTS. The anxiety can be caused by frustration! I was also very active before this illness- delivered mail for the usps- walked 10 miles a day/5 days a week for 7 yrs. now I do well to shop in the mall without getting ill! I understand your anxiety very well it's hard when you feel betrayed by your own body and cant find a reason!!! I'm 30 and otherwise healthy also, I'll pray for you and have hope because you seem to be a strong person and your outlook can make a BIG difference in how you handle this.

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Tim, the test I had was a two part blood draw, one in the am and one in the pm, as cortisol levels fluctuate through the day in a predictable pattern (at least that's what I recall the doctor telling me).

http://en.wikipedia.org/wiki/Cortisol

the quote is from the above website:

"The amount of cortisol present in the serum undergoes diurnal variation, with the highest levels present in the early morning, and lower levels in the evening, several hours after the onset of sleep. Serum cortisol levels fluctuate in response to a number of other variables, including ACTH levels, psychological stress, and such physiological stressors as hypoglycemia, illness, fever, trauma, surgery, fear, pain, physical exertion or extremes of temperature."

Abnormal cortisol can indicate addisons disease (low cortisol), cushings (pituitary tumor), and adrenal problems.

Nina

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What often amazes me is how each of us has become so knowledgeable in this strange world of acronyms and lab tests. Collectively I should think we know more than any single medical specialist living today. In some way our bodies have "failed" us and we begin our long and determined search for answers. We must know why ... because we must recover.

I say this not to criticize the process, for I am also a pioneer and for whatever reason this is our path. I am grateful and indeed blessed to have found so many people who share this journey.

Two thoughts come to mind as I read the posts:

First, keep searching; never stop until you find what you are looking for. But remember even if/when we become an enigma to the ?professional medical system? ? our bodies can heal even in the absence of an answer.

Next, I agree with debabob, thyroid disease is for more complicated than I think endocrinologists even realize. Did you ever wonder ?why? you were hypothyroid? Did they give you an explanation? Our thyroid gland does not expire it is designed to produce bountiful and balanced hormones throughout our lives. If it is not, something is wrong. We can pretend to compensate this by loading up on synthroid and making our TSH tests look ?normal? ? but at the root cause, something is out of tune in our body. Even when our lab results look normal, the fleeting storms of a thyroid gland out of tune can cause the body to experience rapid and irregular pulse and the mind out of shear confusion to plummet into a panic attack.

I have POTS (confirmed with multiple tilt table tests), I have autoimmune thyroid disease (confirmed by multiple lab tests and procedures) ? can?t say one is the ?cause? and the other the ?symptom? can?t say that panic disorder is a symptom or the root at both or none of the other physiological indications. On ?good days? I am content to just let each piece of the puzzle be what it is ?. On ?bad days? I exhaust my mind trying to figure out what I should be doing to make this all go away.

I wish you much luck on your journey and many good days along the path.

EM

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Denabob and EarthMother,

Thank you both for your kind (and wise) words.

I have often queried my doctors as to whether this could be thyroid-related. In the countless bloodwork and scans I've had done to date, the thyroid is the only thing that is ever abnormal. And when my labs are in the normal range, no doctor is ever willing to attribute symptoms to the thyroid. (Only one cardiologist speculated that I could have some sort of hypersenitivity to thyroid medication, but otherwise the thyroid has been dismissed.) Frankly, endocrinologists (of which I have seen a half dozen since all of this started) seem EXTREMELY wedded to lab results. (ie, If the labs look good, your heart palpitations, anxiety, etc. can't be caused my your thyroid. Ah, to have a nickel for every time I heard that!)

But yes, WHY did I develop Hashimoto's hypothyroidism? WHY does my body feel the need to attack something that far from being foreign in it, is actually a master gland designed to keep everything operating smoothly? Very good questions that the present state of medicine doesn't seem equipped to answer. I have a theory - and absolutely no way to prove it - that my excessive consumption of soy protein (bars, shakes, nuts, etc.) may have caused my hypothyroidism. (For those of you who are hypo, try Googling "soy" and "thyroid" and see what comes up. Very scary.) In this instance, I can discount the saline breast implants I mentioned in another post, as I was diagnosed prior to surgery.

Denabob, you said I sound like an intelligence person - I thank you for the compliment but I think it's less intellect and more stubbornness that's gotten me this far! I simply refuse to accept that a perfectly healthy woman in her early thirties suddenly gets stricken with these distressing symptoms - and there's no answer, no cause, no diagnosis. "Just treat the symptoms" - another phrase I've heard countless times. But I don't want a bandaid, I want a cure!

Of course, now that I've been down so many paths - save the NIH - I am starting to slowly accept that a bandaid may be all I have. I'm not yet ready to declare myself a medical enigma - but I think if NIH can't come up with a diagnosis, that will be inevitable. And I'll start trying out the different bandaids...

Again, I can't thank you all enough for welcoming me here. I will certainly share any insights I gain from the NIH with you, along with my friends over on the pheo board. I spent a lot of time over there over the last year!

Praying that our good days outnumber or bad ones,

RunnerGirl

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Denabob & Earth mother,

I really liked all the support you gave runner girl. I am hoping you could give me some....I am at my wits end trying to figure out what is wrong with me. Some of my sypmptoms are similar others are not.

I was a healthy 38 yr old with a very busy life. One night last november I came up my stairs and had chest pressure along with a very irractic heart beat. It got worse over the next few days and I became anxious and it would get painful if I did not rest. over the next three weeks it became so bad, getting to the bathroom was a major ordeal.

I ended up in ER for 3 days, all cardiac work up normal. Holter monitor showed PVC's in the 10,000's over 24 hrs. I had never had them before this. During the stress test I had acute sharp chest pain with the stress test that was only relieved when lying down, something the dr told me was not right. And that my PVC's can't hurt. Mine did, wave like spasms of pain. While I was cluching my chest and sobbing on the table the Cardiologist patted my arm and said those are palpatations and left.

Summary: they sent me home with a dx of papatations and chest wall pain and told me to take naprosyn for the chest wall pain and a beta blocker. Here I sit 4 months later

still with activity intolerance. I had switched to vioxx for the chest pain which is helpful if I don't accelerate my heart rate....I am not sure why this works and have been going to PT for trigger point therapy...(I self dx for myofascial pain and was part right) the pt has helped some but still have days with all sypmtoms. Ususally after my shower, after eating or walking around for a period of time. Symptoms are better with rest or double Vioxx doses.

I have decided to find a new Md. I don't know if the above senario is POTS. What does it sound like to you? I am so tired of being tired. I have been to my MD many times over the past three years for fatigue. She just said "getting older, depression, or anxiety and sent me on my way.

All my blood work is normal.

I have had Blood pressure episodes over my life but I just passed it off as having low blood volume and low pressure. I have a great deal of difficulty recovering after general anesthisia. I always faint after losing any amount of blood: donating or surgery. I have never been able to be an athlete without the chest pain and lightheadedness that comes with it.

I have tried all my life to be a runner and can never get past that chestpain I get after the first block. I have tried everything over the years.

Any help would be great. I am seeing a new Internist tomorrow. I am going to ask for a tilt table test. Can you still have pots with this being negaitive? Are there anyother tests I should be asking for? And do you know of a corolation with POTS and trigger point therapy (scalene and pect major specifically)?

I am just so frustrated.

Thank you in advance for any help on this.

Kari

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Dear Kari,

My heart goes out to you (no pun intended ... ok, maybe a small pun:-)

I read in your post that desparate search for answers and the sinking feeling as we come up empty each time. I am so sorry dear, big hugs to you.

I wish I had some wonderful sage advice to offer. But I know the miasma you are wading through and I know there is no wisdom that will illuminate your path. However, it sounds like you are following your heart's intentions. You are listening to your body and seeking answers to your bodies questions. Never give up hope that there is help out there and that you will find it on your journey.

On the same hand, know this ... that even when we find closed doors and dead ends within our expert medical system, that the wisdom of our own body will not be denyed. Healing is possible, even without a doctor present. Do all that you can do, all that you are doing ... but at the end of the day know that your body is healing. Your body can heal with or without the answers from anyone on the outside.

Have you ever had a "stress test" at the cardio's office? You mention a holter monitor, but have they done a tread mill test as well? Sometimes the latter can be interesting/informative.

Good luck on your journey,

EM

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Hi Kari, welcome. You might want to post your questions under your own topic heading (use the "new topic" button) so that people know you're hear and have a sense, from the title, about what kind of help you need.

Nina :)

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Hi kari! I'm sorry you have to go through this ordeal with us but I welcome you to our support system . I have never had the chest pains but the rest sounds way to familiar! My tilt was possitive and a standing test shows heart rate increases also. They just hook you to an automatic blood pressure cuff and make you stand still for about 20 min to take by the minute readings on heart rate and bp. Of course un-medicated I didnt last the full 20 min but they got the info they expected. A friend of mine had the type of pain you describe and she was told it was a strain to the heart wall vioxx also helped her but it only lasted about 2 months and now just comes and goes. No real danger to her health just alot of discomfort but she didnt have any other symptoms at all! The only real advice I have is to find a good DR and if you feel you have POTS then find one who knows about it because alot of DRs dont! Good Luck and Take Care!

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RunnerGirl - my first "episode" on autonomic instability happened after taking steroids and they documented frequent PVCc and PACs on my EKG but said it was insignificant and yes called them palpitations and basically sent me home saying nothing is wrong with you (from ER visits). The tachycardia persisted much of the day for weeks.

My last episode happened last summer seemingly triggered by calcium supplementation and persistent diarrhea, excessive thirst and urination, etc. (everything seemed to go out of whack). The EKGs in my multiple ER visits progressed from sinus tachycardia to sinus arrthymia to later about 2 months later and a dose of antidepressant I didn't tolerate well to paroxysmal atrial tachycardia and still my resting heart rate was high and upon standing and movement would go up 20-30+ beats per minute (i.e. resting heart rate 110-115...with movement 135-140+). It is a very uncomfortable sensation to say the least and I am not a doctor either but I feel the feelings of palpitations are the heart trying to readjust the rhythm and slow itself back down (PVCs and PACs, etc.) but interestingly enough none of these have shown up this second time around however I have had nonspecific T-wave abnormalities...(don't know what that means either but evidently they are not serious either).

I know your discomfort, I know your frustration, and I know your anxiety. My body was in what I called an anxiety state long before my mind got involved...it was like my body was running away from me and doing things I couldn't control (i.e. heart rate)...it was later the mental panic attacks started I think like somebody else has said before because our brain struggles to make sense of it and then mental panic starts to set in. Hold on and hang in there...I definitely think you are on the right track. Also, I too felt my thyroid was involved but you are right...if the numbers are in normal they say your symptoms cannot be related. My TSH had trended down towards hyperthyroidism and I had all the sympotms but the endo guy said no connection. Who is to say their tests aren't flawed and they don't know as much as they think they do about thyroid and individuals...many people as I've said before I think suffer from hypo and hyper symptoms while still in the high-normal range and low-normal range...but they don't get treatment because hey...it's still the normal range.

To Kari, welcome to the board also. I have found this board not too long ago and it has helped me tremendously in dealing with POTS. The support and sharing of information is vital. I have heard of people with POTS experiencing severe left-sided chest pain and it has something to do with blood pooling in that side of the heart or not pumping efficiently or something. I'm almost positive the information was on the NDRF website where I saw it. Others here are also more educated and can probably give you more insight and information. About your PVCs, I'm sorry but I only had a few showing up on my EKG and holter which they considered insignificant....I would think 10,000 would be be pretty significant. I also want to say about blood work being normal.....I realize this is a valuable tool for physician's to assess conditions in individuals but as a medical transcriptionist I can tell you that people can be dying and die and their blood work still be normal (and I mean like CBC with diff, thyroid function, kidney function, liver function, blood count, glucose, clotting factors, etc.). It is a tool and is informational to diagnose many problems like renal failure and many other conditions, but should not be solely relied upon to assess a patient. Not everybody who is ill will have it revealed in their blood work. Showering, eating, and walking around for a period time I think directly effects your blood pressure (hot showers dilate blood vessels which can cause blood to pool in extremities, eating draws blood to the gut for digestion and can cause some pooling taking it away from other vital organs, and walking or standing for long periods of time can cause blood pooling in the lower extremities due to gravity and the various mechanisms that fail to pull the blood back up toward the heart and brain where it belongs which is why the heart rate increases I'm told...to try to compensate and bring the blood back up and maintain the blood pressure). I too am just turning 37. Others can help much more than I here in the testing information (Michelle has posted always so many good links I can't keep up!) but I was diagnosed by tilt table myself so I agree that asking for that would be a good idea.

Lastly, I like EarthMother's comments about healing and how it can take place without the help of a doctor. After all, doctors do not "heal" anybody...they aid our bodies to heal themselves (with treatments, medications, understanding, support, etc.) which is what our bodies are supposed to do on their own. She strikes me as a very spiritual person and I am uplifted by her posts. Of course it helps to have a good doctor...something most of us struggle to find, but overall my faith is in God and not the medicine or the doctors....through Him only have I found the strength to run this race that has been set before me. I didn't ask for it and I don't think I did anything to cause it, and I've prayed first to have it removed, then I prayed for strength to endure it, but now I'm praying for strength to enlist it somehow for my good and put it under my feet and not be defined by it. This has been very much a spiritual journey for me as well as a medical journey and that my friend is the way I'm coping. I know everybody here probably isn't a Christian but many people believe in a higher power and today I'm just moved to say that what satan meant for evil, God will take and make it for our own good. When I feel like giving up and falling into pity and worry I try to put my mind on higher things and trust in Him...

It is hard to feel like a gunea (sp?) pig, trying this and trying that, but maybe someday everything that we are going through will lead to a completely new understanding and discovery and will save others from suffering. I wouldn't choose this nor wish it on anybody but like many unexplained illnesses before this...many suffered but ultimately it saved somebody else and benefited them down the road. Again I wouldn't choose it and it is a cross to bear....but we never know what good purpose it will serve later for others and that makes it easier for me to accept.

Sorry for rambling! :)

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Jackie,

I have read your story and marveled at the similarities between my case and yours. Thank you for reaching out to me, as the others have done on this website. I hate that anyone has to experience this, but it does help to know I'm not alone.

Tomorrow is a big day, as I head to the NIH for one last chance and solving the riddle. I, too, take heart that if NIH cannot figure me out, perhaps as EarthMother suggests, my body itself will someday find equilibrium again. I know I feel much better than I did when the symptoms first came on in full force. So there is some hope for natural healing...

It's interesting that you mention your symptoms came about after taking a calcium supplement - a seemingly innocuous substance! I mentioned earlier my excessive consumption of soy. My symptoms were at their very worst when I was eating soy protein shakes and energy bars during the last few weeks of training for a marathon in Fall 2002. This is when my heart when crazy for the first time and I wound up in the ER. I didn't know soy was bad for thyroid patients, but in my quest to figure out why I suddenly starting having "panic attacks" and racing, irregular heartbeats, I starting researching ANY and all possible connections. What had I done differently in the weeks leading up to the onset of my hyperbeta adrenergic episode? I thought of the soy and immediately found all of this literature on soy as a "neuroendocrine disruptor." I cut the soy supplements from my diet, and did notice an improvement. But I still suffer from these episodes of autonomic and/or hormonal upset (tachycardia, PACs, BP lability, anxious/nervous/weak feelings, night sweats, cold extremities, etc.). It's hard to know what role, if any, the soy played.

I've been coping so far without medication, save a small dose of xanax to help me sleep (.25 mg before bed). But once I get through the NIH testing, I will be anxious to try to treat the symtpoms with either an SSRI and/or a beta blocker. Doctors have been suggesting both to me for some time now, but stubborn me wanted a diagnosis before I set about treating my symptoms. I'm getting tired of fighting and just want to feel better - consistently - so I feel like it might be time to try the medication.

Speaking of which, does anyone take the beta blocker Kerlone? Also, what SSRI's have people found to be most effective? I have both Lexapro and Prozac from my psychiatrist, but haven't yet decided which to try. (He's very open to my suggestions and has been very active in helping me find answers to my health problems.) I suffer from both the physical symptoms of anxiety AND the mental anxiety generated over the persistent worry over the symptoms. It's a bad cycle and I need to break it. Any suggestions?

Thanks, again, Jackie - and everyone else - for your kindness and insights.

RunnerGirl

ps. I, too, find that my faith and prayer has held me together in these difficult times. I know God has let these trials come into my life for a purpose, and He will see me through it.

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