RunnerGirl

Hi, Katherine. It's been a long time since I posted here, but I do still lurk ocassionaly. I just wanted to tell you I'm sorry to hear you've relapsed. I also wanted to voice a note of solidarity with you regarding your belief that Hasimoto's and related thyroid hormone adjustments (both up and down) have some connection to your POTS-related symptoms. When I was at my worst, several years ago, my thyroid was completely unstable and my doctor tried valiantly to chase up or down my wildly fluctuating TSH with many med adjustments. I kept saying there must be some connection between this and my sudden onset of unexplained tachy, nervousness, panic, BP spikes, and other hyper-adrenergic symptoms. But almost every doctor dismissed this ("Your labs are showing you're HYPO and you're having HYPER symptoms - so it can't be your thyroid.") At the end of the day, I believe this is nonsense. The thyroid, the master regulator gland, is connected to so many functions in our body. Even a slight misalignment can cause an upset in our body's 'stasis.' For what it's worth, my thyroid has been the most stable it's ever been since diagnosed in 1997 for the last two years - on 112 mcg of Levoxyl (we finally settled there after many switches between 100 and 125!) - until just a couple months ago. And my POTS-related symptoms have been quite good, save a little anxiety (that may or may not be POTS-related) treated with low dose Xanax as needed. With my labs showing me a little HYPER, I reluctantly agreed to go back to 100 mcg. I did this is part because I've had a stress fracture in my pelvis (from distance running) that has refused to heal in over a year. My doctor suspected excess thyroid hormone may be inhibiting the healing of the bone. Alas, I have indeed felt a little 'off the beam' since changing the meds. More breathlessness, more anxiety, more irregular beats (PACs, sometimes scary runs of them) - but thankfully nothing that's truly unmanageable at this point. Anyway, I hope you get the symptoms under control again. At least you know a regime that works for you with the low dose SSRI, low dose beta blocker when necessary, and good nutrition and exercise. Best, (Injured!) RunnerGirl (<--Should change my name to cycle girl if this stress fracture doesn't ever heal!)

Poohbear: Interesting article, indeed. Thank you for sharing it. What I find particularly enlightening is the discussion of IST and POTS having some overlapping symptoms. I was told by a couple of different doctors that I had features of both, and didn't seem to fit neatly into one category or the other. Sounds like that is not terribly unusual. What is more, I was always given the impression that IST involved a sustained high resting heart rate. But the article says there can be noctural normalization of the HR in IST - and this is precisely what would happen with me, when I was very symptomatic. My HR would often dip to the 40s and 50s at night (normal for me) - but I would awaken with it around 90 or so, still laying in bed. At other times, I would have a normal resting heart rate, but it would jump dramatically when I stood, and drop like a rock when I sat back down - which, of course, is more emblematic of POTS. Katherine and Morgan: Good discussion of life expectancy issues, too! You both raise good points. I am puzzled by the persistent life expectancy gap between men and women, since, as Morgan notes, women are more likely today to have the same life-style / risk factors as men (high stress jobs, poor diet and exercise habits - which leads to obesity, high blood pressure, etc., excess alcohol consumption, and all sorts of other 'vices' that can shave years off our lives). Maybe the gap persists because women are more likely to engage in 'preventative health care' throughout their lives - ie, pap smears, mammograms, etc. Women are also more likely to seek medical assistance for a range off health problems - from depression to chest pain. (Whether we're taken as seriously as men who seek attention for the same issues is another story altogether!) RunnerGirl

Mom4: I, too, am extremely sensitive to meds. I started on Lexapro at 2.5 mg (yes, that's a crumb!) and worked my way up to 5mg after a couple of weeks. Believe it or not, I stayed at 5mg and found that low dose helped quite a bit with my hair-trigger heart rate, unexplained waves of nervousness / anxiety, and other hyperadrenergic symptoms. Unfortunately, I also suffered from side effects at that low dose, as well: night sweats and vivid dreams (which were totally tolerable from my standpoint) and MAJOR increase in ectopic heartbeats (NOT tolerable, from my standpont!) Ultimately, I made the decision to go med-free because the irregular heartbeats were driving me nuts and my ANS issues were getting better over time. I still have days when I'm symptomatic, and I'll sometimes take a crumb of beta blocker (Kerlone / Betaxolol) if my HR is really haywire. But usually it goes away on its own. I say 'go for it' with your doctor's OK on the SSRI. It really did help with the hyperadrenergic symptoms. And not many have the irregular heartbeat as a side effect, though sweats and vivid dreams are somewhat common. Good luck! Let us know how it goes for you!

Katherine, I, too, am sorry to hear you're having symptoms lately. I can tell you I will still get some of the same sensations you describe out of the blue. But, happily, they go away almost as quickly as they appear. A few will linger on, particulalry if I think about it too much. I know I'm not concocting these symptoms in my head - nor are you, of course! But if I focus on, say, being dizzy or feeling like I'm not able to breathe, I find the symptom is troublesome and worrisome. If I distract myself, lo and behold, I find the symptoms will diminish. This is especially true for the odd sensation of feeling like I can't get a good, deep breath. This feeling is often accompanied by the sensation of anxiety, even through I'm not consciously anxious about anything. I've chalked it up to ANS issues, since I can jump on the treadmill and crank out a good, hard run in the midst of one of these episodes. Clearly, I am getting a breath, or I wouldn't be able to do this! (Yeah, I know - odd coping strategy, but it convinces me I'm not dying when I do this!) Anyway, all the other suggestions are good ones. The other thing I would note is that I sometimes had strange hot flushes / adrenaline surges when I was on SSRIs. And I still sometimes have them, even though I'm off. I think sometimes it has to do with my quirky thyroid. If memory serves me, you, too, have hypothyroidism? Are your latest labs in good shape? Even if they are, I'm convinced some of us are simply more sensative to fluctuations in hormone levels. Maybe that is part of what is going on right now. Either way, I hope you are feeling back to normal soon! Good luck and keep us posted! RunnerGirl

Jan, I just wanted to add my voice to the chorus of support here for you and Jeff. Cancer is a heinous disease and it has taken so much from me in my 34 years - my father (at age 46, from Hodgkin's Disease, a form of lymphoma), my grandfather (leukemia), my grandmother (lung cancer), and at least a half dozen other friends and relatives. Some of you know I am a runner, and I started running marathons to raise money for the Leukemia & Lymphoma Society back in 2001 to mark the 10-year anniversary of my dad's death. I haven't let up since, though my 'run-in' (pun intended) with autonomic dysfunction made training daunting and frightening for a while - but, thank goodness, never impossible. I am blessed to be relatively symptom-free right now, and I'm once again training for a half marathon and raising funds for cancer research and patient services. Jan, I will run with Jeff in my heart this weekend. He will be my 'honored teammate" when I gather with my group from the Leukemia & Lymphoma Society this weekend. And, of course, you will both remain in my prayers. RunnerGirl

So glad to hear all went well with your pregnancy at the birthing center. And both of your little ones are adorable! Thank you for sharing with us. Wishing you many happy, healthy days ahead with your growing family! RunnerGirl

<<Also, it will help me choosing a route for our trip to the USA (which we will make in 2008, when we're married for 25 years!!!). I'm already saving for that, because we planned to make this trip with the 4 of us, renting a camper and driving through the States, for about 4 weeks.>> What a wonderful adventure that will be, Corina! Hitting the big cities on the East and West Coasts is grand, but make sure you get to see some of the stuff in between. My personal favorite part of the U.S.A. is the Desert Southwest (Arizona, New Mexico, Southern Utah, Nevada) - we have some amazing National Parks there (Zion, Bryce, etc.) with gorgeous red rocks and aqua blue skies that seem to go on forever. I will have to send you some digital pictures from one of my last trips there so you can see how amazing it is! Of course, you'll have to visit us in the nation's capitol, too! There seem to be a lot of us on the board from in and around Washington, DC, so you will have some good tour guides! Hope you are feeling well and staying away from those doctors who need "knuckle sandwiches!" :-) RunnerGirl

Just joining the "Way to go, Avais," chorus. Well said, well done! I even posted a link to your message in another thread. It's too good to miss by anyone troubled (as I know I was for a good long while) by PACs, PVCs, and other heartbeat irregularities. Yours truly (and happily in normal sinus rhythm at the moment!), RunnerGirl

JLB / Jen: If I could give you a big hug right now, I would. As I and others who have dealt with heart rhythm disturbances have posted to you before, we know how anxiety-provoking this symptom can be. But please re-read what I posted to you earlier. And read this from another thread: {http://www.DINET.org]}showtopic=2624&view=findpost&p=24902 You've said you have already had an extensive medical work-up. TRUST what your doctors have told you - that you have a troublesome, quality-of-life-altering, LEGITIMATE condition - but not a life-threatening one. Don't let a reference to 'people dying from arrhythmias' sway you from the facts about your own personal case as told to you by your own, personal, knowledgeable doctors. Most docs really don't want to tell someone there's nothing wrong with them, or that their condition is not life-threatening, when, in fact, it is - if not because they are genuinely trying to help us, then at least because they don't want to get the pants sued off of them! :-) You see my point: Your doctor(s) have no interest in giving you false information, or hiding the truth from you. Another point I'd like to make, as delicately as I can, is that people with POTS (or other forms of autonomic disturbances) can and DO often have co-existing medical conditions, including anxiety and/or panic disorder. I, in fact, have suffered from both. I happen to think one accentuates the other, and that a misfiring of the fight-or-flight system is at the root of both. I know I didn't CAUSE my ANS problems by worrying or being stressed. And neither did you. But I know my anxiety magnified my symptoms, which in turn magnified my anxiety - and so on and so on... Jen, would you be willing to admit that treating the underlying anxiety caused by your (understandable) worry over your very real, very frightening physical symptoms and what they mean for your long-term prognosis could perhaps help you feel better physically and mentally, giving you more strength to cope with your ANS troubles? This would be a good first step. I fear you feel you are caught between a rock and a hard place - afraid to admit you need to treat your anxiety for fear it will be tantamount to admitting there is nothing else wrong with you. Please don't let this fear keep you from getting the help you need. I needlessly suffered for a number of months because I refused to treat my 'anxiety' - which I believe was mostly a symptom of my ANS troubles - because I KNEW I had something else going on. Not 'just anxiety.' So, great. When I finally got to an EP and a hypertension expert who knew about ANS troubles, they said, yeah, you've got something else going on - can't chalk this up to 'just anxiety'. But we treat it by treating the symptoms. What were my symptoms? Anxiety, a hair-trigger heart rate and irregular beats galore, and spikes in my BP. What was the treatment? Beta blockers, SSRIs and benzos - the same things used to treat anxiety! I felt validated, but also a bit stupid. I prolonged my suffering to make a point - but to whom? I don't know. Anyway, pardon the ramble, but your posts sound so full of despair and I really, REALLY felt the need to reach out to you. I was there, Jen, right where you are. And I made it through that period and today live a mostly normal life. Actually, I live a BETTER than normal life - I live an extraordinary life. Not entirely free from skipped beats or tachycardia or anxiety - but I'm no longer preoccupied or paralyzed by it. You can get there, too. Best to you, RunnerGirl

Katherine: If you are Ms. Maryland, then I guess I can claim to be Ms. Maryland - First Runner Up! :-) Or maybe I'll just take the "Maryland CRAB" title! :-) I'm in Crofton, MD - about 15-20 minutes west of Annapolis - but my fiancee and I are building a home in Centerville, on the Eastern Shore. We may just flip it, though, as I am presently interviewing for a full-time position in downtown DC. If I get an offer from this firm and decide to take the job, we're going to need to remain on this side of the Bay Bridge! I have lived in many parts of the U.S. though, and also lived overseas during two summers while I was in graduate school (first year in Barcelona, Spain, second year in Stockholm, Sweden). I was born in Ridgewood, NJ and lived in the following places over the last 34 years: Kansas City, MO; Newtown, CT; Central Florida (Tampa / Orlando); Atlanta, GA; Arlington / Fairfax, VA; Washington, DC (Capitol Hill); Boston, MA; and now the Maryland side of the DC 'burbs. This is an interesting thread! Thanks for starting it! RunnerGirl ps. For my Dutch and Canadian friends: MO = Missouri; CT = Connecticut; GA = Georgia; MA = Massachusetts :-)

Earthmother, I think we've hit this topic before, but I, too, have Hashimotos. After a period of relative stability, my thyroid was ALL OVER THE PLACE for about a year, particularly when I first had the onset of my ANS symptoms. I've always been convinced that the thyroid had something to do with my issues, including the PACs and PVCs. Knock on wood, my thyroid has been stable for the last year, and my ANS troubles are also much improved. Definitely makes me wonder about the relationship between autoimmune diseases like Hashi's and POTS. RG

1.Did you have a history of PVCs directly before POTS symptoms onset/diagnosis/etc? (people commonly have them, but I am talking about the kind that are actually bothersome and noticeable) I'm sure I did, but I never noticed them. 2. Did you notice that when you were sick, your PVCs were more prevelent/pronounced? No, I actually noticed them when I started feeling BETTER. I think having sinus tachycardia tends to mask the symptoms of PVCs, since the pause between the premature beat and the regular beat is not as pronounced when your heart is going fast. I notice my PVCs (actually, I get mostly atrial ectopics, PACs) most when I am calm, quiet, resting, with a low heart rate. 3. Have your PVCs continued with the same pattern throughout your POTS illness? They initially got worse as my sinus tach got better - something I later was able to connect to a side effect of an SSRI I was put on to help with my symptoms (Lexapro). The frequency of noticable ectopic activity in my case has diminished with the weaning off of Lexapro and, frankly, my growing ability to ignore the darn things (or at least not obsess about them) when the strike. 4. Did the onset of PVCs correllate with anything in your life? Yes. The awareness of my heart rate during the onset of my POTS symptoms; coupled with the anxiety and frustration over being told initially it was 'panic attacks,' (I KNEW my heart rate wasn't skyrocketing on my daily runs from panic attacks!); which then turned into anxiety over being told I might have a rare adrenal gland tumor (pheo); which THEN turned into anxiety over simply not having an appropriate diagnosis! You get the picture. I'm not sure if it was the illness itself or the STRESS and WORRY over the illness that made my ectopics worse. Looking forward to other's answers here...

Hi, Corina! It seems that "Nancy Drew" does not have the same "fame" among Dutch little girls as she does with American little girls! :-) Nancy Drew is a beloved fictional character, the heroine of a series of mystery books written for children and young teenagers. Nancy and her friends ALWAYS solve the puzzle, the mystery, etc. I read just about every Nancy Drew book growing up, and I know kids are still reading them today. Anyway, is there such a character in Dutch childrens literature? It's fun to get to see our cultural differences and learn about each other! Best, RunnerGirl

Hi, Roselover! I just saw your post and I would be MORE than happy to share my story. It's a little detailed, and I'm in a bit of a rush at the moment - but I promise a thorough report in the next day or two! Stay tuned! But I did want to quickly thank you for your kinds words and say I'm happy that you (and maybe others) were able to take comfort from the post on tachycardia and arrhythmias. I want to emphasize that I can articulate these things in a calm, clear way ONLY BECAUSE I, too, was plagued by all the same fears and anxieties that you, JLB and others have expressed. My journey to making 'peace' with my crazy heart has been one of ups and downs, believe me! As a preview to my story, I will say that I have never been diagnosed with full-blown POTS. My electrophysiologist says I have/had some form of hyperadrengic ANS dysfunction, short of full blown POTS, but I think MANY here will be amazed at the symptoms I had and wonder that I actually didn't get the POTS label. Frankly, I think the fact that I never had a TTT when I was at my worst may be the only reason I didn't. But more on that later! One other note: When I was researching what was wrong with my body (knowing it was NOT panic attacks, as my cardiologist first told me), I was in the midst of training for my first marathon. I found someone online who had the EXACT SAME SYMPTOMS - and he was an elite cyclist. He, too, was confounded by the fact that his heart rate would SOAR when he commenced exercising (just as mine did when I ran) - something that should NOT happen to fit, young endurance athletes. He was still able to cycle, just as I was still able to run - but it was definitely impacting his performance and rattling his nerves. As with me, this situation had come on rather suddenly. What was going on with him, with me?! I tracked him down through a post he had made years earlier, and said, "Look, I'm at wit's end. Were you ever diagnosed? What did you have? How are you doing?" Well, he was kind enough to respond. He had been diagnosed with - you guessed it - POTS! He was treated with Clonidine and he said his symptoms eventually resolved to the point that he no longer needed medication. I looked his name up recently and saw him doing extremely well in some cycling races and time trials. So, even if you can't take hope from my story (since I didn't get formally diagnosed), take hope from HIS story. This guy is a world class athlete - before and AFTER POTS. :-) Again, more on me later. But I wanted to share something positive right away! RunnerGirl

Linda, Maybe I can help clear up some of your confusion. First, I think we have to define what we mean by 'irregular heartbeats" - as we're all using that term here in a very broad sense. 1. Yes, one of POTS hallmark symptoms is tachycardia (hence the "T" in POTS) - which is a form of an arrhythmia technically defined as a HR in excess of 100 bpm. Most POTS patients when speaking of tachycardia are referring to SINUS tachycardia. In other words, the heart's rhythm is being generated via the normal electrical pathway (ie, the sinus node.) It's just that the heart RATE is inappropriately high for the given activity (ie, standing). So, technically speaking, sinus tachycardia is not an abnormal heart rhythm per se. Sinus tach is quite NORMAL when one exercises, for example. 2. Yes, many POTS patients ALSO complain of other "heartbeat irregularities" - mostly atrial and ventricular ectopic beats (PACs and PVCs). But, as has been pointed out here already, many, MANY non-POTS people experience PACs and PVCs. It might be that POTS-ies tend to have a higher incidence of ectopic beats than the general population. OR it might be that we have a hightened awareness of heartbeat irregularities, undergo more testing that reveal this, etc. But the point is that both POTS and non-POTS patients have a very high incident of benign arrhythmias. Some people feel them - some don't. 3. POTS and non-POTS patients also report other arrhythmias - SVTs, afib, v-tach, etc. - but I am not aware of anything indicating that POTS people are more or less likely to experience these types of heart rate disturbances. Again, not to beat a dead horse, but arrhythmias occur throughout the population - the more dangerous ones (v-tach) happily tend to be the rarest. 4. I think 'dysrhythmia' is actually just a synonym for 'arrhythmia'. The term used to describe a HR below 60 bmp is 'bradycardia." And, again, this usually refers to a heart that is otherwise in normal sinus rhythm, but has a slower normal resting rate. Bradycardia is a common finding in endurance athletes (my HR often drops to the 40s at night, and Lance Armstrong's has been reported as low as 32!) Obviously, bradycardia can also be present in people taking medications like beta blockers. Unless you experience symptoms with your bradycardia, you probably have no need to be concerned about a rate of 50 at rest. Hope this helps!

JBL, Please read the post Earthmother referred to up above. It was a wonderful, reassuring piece. No one should dismiss heartbeat irregularities, but once a thorough cardiac workup has been completed (including EKGs, echo, and maybe a stress test. depending on your age and other health status), any good cardiologist will tell you that the VAST MAJORITY OF HEART RHYTHM DISTURBANCES ARE BENIGN - ESPECIALLY in the context of a structually normal heart. If you have had an echo done, your doctor would be able to determine that your heart is structurally normal. That is not to say that what you feel isn't extremely anxiety-provoking! It IS! But just because it feels scary doesn't mean it's dangerous. I have great empathy for you, as I was once where you were - fearing every flip and flop of my heart meant certain death. But, after going to the ER numerous times over the last few years, I FINALLY decided to BELIEVE what each and every doctor - including my own cardiologist - told me: these things can feel awful, but they are harmless. The havoc they wreak is in our minds. **** it, I was giving this thing WAY TOO MUCH CONTROL over my life. I decided to let go of the fear. Oh, sure, I still get a little anxious when my heart starts doing crazy things - but I just go about my business and it eventually subsides. Virtually EVERYONE gets ectopic beats - only some of us are 'lucky' enough to feel them. Assuming you've had the workup described above, please, PLEASE try to let go of your fears. Get mad instead - and reclaim your life from these nuisances! I've posted this before, but I also wanted to add that I ran two full marathons (26.2 miles) last year. At the start line of one of them, I was throwing off ectopic beats every other second! I was so anxious and keyed up about the race! But once I started running, I hardly noticed them and they eventually subsided. The point of this is not to brag about my athletic pursuits - :-) But rather to assure you that just because a heart skips beats doesn't mean it's unhealthy! I hope some of what I've said has helped you. My heart really goes out to you (no pun intended!) - since I truly know what you're going through. But you need to decide that you are not going to let these things rule your life. Easier said than done, I know. But keep at it! Best wishes, RunnerGirl

Gena and Tammy, I, too, suffered very much in the way you both describe when I was at my worst. In fact, a severe bout with insomnia seemed to kick off my other symptoms - tachy, anxiety, waves of panic (totally physical in nature, not triggered by any emotional upset) and, in my case, high blood pressure episodes. I have had about four bouts of major insomnia over the last five years, but the worst was one that lasted three weeks (I am not exaggerating - I wish I were!) I truly didn't sleep at all for nearly three weeks. I honestly thought I was going to die from lack of sleep. Ambien didn't work, nor did Ativan. I had to take a 1-week leave of absence from work because I couldn't function. (I was working at a very high pressure consulting firm doing mergers & acquisitons analysis and I simply couldn't focus.) Ultimately, I went to a psychiatrist (my first ever trip to see one) since my GP was at a loss (labs were normal). A short course of Xanax finally broke the cycle, but I feel this was a harbinger of my ANS troubles. Happily, I am mostly normal these days and I haven't had such a bad episode in nearly three years. But my memory of how miserable and scared I was remains quite strong. I think I am among the 'grass in greener' crowd who would rather feel like sleeping all day than going days and weeks on end with no sleep! Wishing us all sweet dreams! RunnerGirl

<<I would begin with my blood pressure going up, with the feeling of heat going to my face and fingers running up my spine. Then, my heart would begin pounding rapidly, then go irregular. After that, I would start shaking uncontrollably and have to pee really bad. Then, all of a sudden, it's like the vaso-vagul kicks in and my blood pressure drops, the shaking suddenly stops, but I feel quivery and still have to pee.>> Linda, I'm sorry if I've asked you this question before, or if you've answered it in another post, but have you been worked up for pheochromocytoma? What you are describing sounds very much like a pheo episode. Granted, many of us with hyperadrenergic variants of ANS dysfunction demonstrate pheo-like symptoms, yet have had the adrenal gland tumor definitively ruled out. Pheos are quite rare. But if you haven't yet done this, I would suggest you get with a good endo ASAP to have it properly ruled out. I hope you are feeling better today! Best, RunnerGirl

Katherine, I was so sorry to read about your reappearance of symptoms. But it sounds like you have a healthy attitude about it. You know the SSRI does something positive to rewire your body to mitigate most of your symptoms - so when your body decides to 'trip its fuse' again, you just need to go in there to 'reset' it for some time. I am confident you will be able to be med free someday - but, as others have suggested, the important thing is to maximize your functionality and quality of life in the meantime. If that means 20 mg of Prozac right now, so be it. Glad you are feeling better this morning. The anxiety was always the worst for me, even worse than the tachycardia. I know the Prozac will help with both. Be good to yourself and get well soon! RunnerGirl

Ernie: Let me add my voice the chorus here. I was simply crestfallen when I read your note. Like others, I can somewhat relate to being 'brushed off' as an anxiety case. But, in fairness to some of the doctors who saw me early on, my symptoms did look an awful lot like anxiety and/or panic attacks. The trouble is - and I explained this to them time and again - I was NOT having panic attacks when I stood from my bed and my HR rose to 140! (Nor, as a marathon runner, was a DECONDITIONED - that's one suggestion no doctor had the audacity to make.) However, I have never in my life heard of someone having muscle weakness to the point of paralysis as a consequence of anxiety. It is simply beyond me that the doctors would suggest this in your case. Wouldn't it be far better for the them to be honest - and admit that they don't know what is happening to you. Any chance you could get evaluated again at NIH? Dr. Goldstein I know is familiar with your brother's case and I think you once told me you were there yourself for testing??? Frankly, if I were you and I would have needed the psychiatrist - if only to help me cope with the arrogant, dismissive doctors! Don't give up, Ernie! You know in your heart and your mind and your soul that something is physically wrong. Trust your instincts and keep fighting. And remember we're all here for you... RunnerGirl

Hi, Corina! Yes, I have been to The Netherlands before, though I didn't get to spend much time outside of Amsterdam. I've been there twice, both times in the Fall, so I have never seen the bulbs in their full glory! (When I was in graduate school, I spent a summer living in Barcelona, Spain, where I met a wonderful Dutch man that I began dating. After the summer, I moved back to Washington, DC and he went back to Amsterdam. We tried to maintain the long-distance relationship for a while, but needless to say it's difficult with an ocean between us! That was more than 10 years ago and I'm now happily engaged to another man, but I'm still friends with my Dutch ex-boyfriend. He's actually from Leiden and says the next time I'm in The Netherlands I MUST get outside of Amsterdam and see the beautiful countryside! Thanks, again, for keeping us posted on Ernie. We'll look forward to updates from both of you when you've both had a chance to rest up! Take care of yourself! Warm regards from across the pond, RunnerGirl

Hi, Amy. Yes, I do remember quite well that you had the 'inteferring substance' result on your PFM test. That's quite interesting that you were able to implicate L-Carnitine as the culprit. I know NIH says only Tylenol interfers with their assay, but I wonder if they've just never come across patients on amino acids. Again, it's very interesting information to have. Thanks for sharing! BTW, were you able to be retested off the L-Carnitine? Or did the doc not think it was necessary? Hoping you are feeling well these days, RunnerGirl

Corina: Hallo! Thanks so much for keeping us updated on Ernie. I've had a soft spot in my heart for her since we corresponded a while back regarding her case and that of her brother. I hope she gets some much deserved answers during her stay. Better yet, let's hope she can get some appropriate treatment to get her on the road to better symptom management and eventual recovery. RunnerGirl ps. Are the bulbs yet in full bloom in your beautiful country? :-)

Hi, Gena! I second Katherine's suggestion about the importance of a FULL thyroid panel, including possibly a test for thyroid antibodies - which can show up before any real changes in thyroid function as measured by TSH and free T-4 and T-3. Regarding adrenal gland testing, there is a test that is considered more accurate (less likely to generate false positives and false negatives) than the 24-hour urine catecholomine test you underwent. It is called the Plasma FREE Metanepherine test and it is used exclusively to rule out/in pheochromocytoma. If you have a lot of episodic hyperadrengic symptoms (tachycardia, sweating, anxiety, high blood pressure, etc.), it MAY be a good idea to ask for this test. I find it interesting that Mayo docs mostly still use the 24-hour urine test rather than the plasma test, since Mayo's lab is one of the few in the country that process the plasma free metanepherine test. In fact, Mayo processes the plasma test for commercial labs like Quest and Labcorp. As far as I know, only the NIH and Mayo process this test. Point being: if you don't have pheo-like symptoms, it may be a waste of time and money to ask for the PFM test. But if you DO, it might be worthwhile. Good luck with your appointment! Let us know how it goes! Best, RunnerGirl

Good luck to you, Haley. Are you having the clonidine suppression test to check for pheochromocytoma? (With elevated catechomolines, this might be what they are checking up on, though there are LOTS of 'potsies' here that have elevated cats and no pheo.) Again, I wish you the best and hope you can get some answers to your health issues and get on the road to recovery. Best, RG