kalamazoo Posted October 30, 2012 Report Share Posted October 30, 2012 Has any one else been tested for this? My doctor is testing me for this and Addison's disease and then will diagnose me with POTS if these come back negative, I just hadn't heard of this tumor but apparently it's almost the same as POTS but also greatly affects your blood sugar. Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 30, 2012 Report Share Posted October 30, 2012 I was incorrectly diagnosed with this tumor by Johns Hopkins ( positive 24hr urine tests) but do not have it. I actually spent a week at the NIH while they looked for a tumor. I do have hyper pots. I guessing very hyper since I tested positive for an adrenal tumor They are extremely rare ( more so than POTS). The good news is if you do have a pheo surgery is a cure. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted October 30, 2012 Author Report Share Posted October 30, 2012 oh wow, what a misdiagnosis! How were you correctly diagnosed for the hyperPOTS then? I believe I too am hyper pots, but my doctor is new to learning about POTS and doesn't really know much about the subcategories, so I'm kind of teaching him lol Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 30, 2012 Report Share Posted October 30, 2012 Kalamazoo,I've been tested for Addison's - blood work and for a pheo several times - blood work, 24 h urine, abdominal/pelvic ct scan - everything came back negative.My dr referred me to an endocrinologist prior to my POTS diagnosis to rule out Addison's - apparently there are some similar symptoms. Later on I ended up being tested for a pheo as I had some bp spikes after I started taking florinef...my dr still doesn't think it's the florinef at fault for my spikes.Good luck with your tests.Alex Quote Link to comment Share on other sites More sharing options...
lumpchp Posted October 30, 2012 Report Share Posted October 30, 2012 I was also tested for pheo before pots, it produces adrenaline surges similar to hyper pots. I think that's why they sometimes check blood metanephrine and normetanephrine levels when sitting, then standing during some autonomic evaluations. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted October 31, 2012 Author Report Share Posted October 31, 2012 So you were both finally diagnosed with pots then? Was it by ruling out these or was there further testing. My issue is that I dont want my testing to just keep continuing, its been almost ten years and I finally found a doctor. Now I just want a **** diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 31, 2012 Report Share Posted October 31, 2012 After ruling out a bunch of things (addison's and pheo included) and having a positive TTT I was diagnosed with POTS. 10 yrs is a looooong time, chasing drs and having one test after another is not fun. I hope you'll get some answers soon. I'll keep my fingers crossed for you.Alex Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted October 31, 2012 Author Report Share Posted October 31, 2012 What exactly is a positive ttt do you know? I had one and my heart rate went from 90 to 150 when positioned upright, it stayed that way for a few minutes and then remained at about 115. My doctor says this is inconclusive. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 31, 2012 Report Share Posted October 31, 2012 Kalamazoo,my dr would have diagnosed you with POTS based on your ttt. An increase in heart rate (does not have to be sustained) of 30 bpm, or a heart rate of at least 120 when going from horizontal to vertical, without much of a change in bp is a positive ttt for POTS. There is an article by dr Grubb or dr Raj or someone else maybe...that I believe is available even on dinet's article database that mentions this as being THE criteria for diagnosing POTS. you might want to look that up and show it to your dr, or...find a new dr .There has been a recent thread where someone else posted a similar situation. i'm sorry you're going through this as i know how hard it is to feel POTSy and have to go from dr to dr and have test after test ...then hear the results are inconclusive or that you have anxiety (that was my story) ...I remember when all my test results were coming back OK, I was almost praying for the drs to find something wrong. i'll try to find that article and give you the link for it.Hang in thereAlex Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 31, 2012 Report Share Posted October 31, 2012 Here you have it Kalamazoo:www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/under clinical presentation; diagnostic criteria.... The 1st paragraph explains it.hope this helpsAlex Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted October 31, 2012 Author Report Share Posted October 31, 2012 Thank you so much for that article I will definitely show him this. And it is sad that I was immediately diagnosed with a panic disorder without any further testing, that was ten years ago. Now I'm in substantial debt and always want the doctors to find something. It's sad that It has to get to that point but I feel like in so close with diagnosis now, so hopefully I can get freaking diagnosed officially! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 31, 2012 Report Share Posted October 31, 2012 story of my life ... If I show up in the ER their 1st question is - have you taken your ativan? They have labeled me with anxiety a while ago and despite my current diagnosis they still treat me as a nut case.it's frustrating and challenging. There were times when I felt like I hit one brick wall after another.I'm not 100% better, but at least I know I am not crazy, I wasn't making up all my symptoms. I am not out of the woods yet, but at least the meds I take help me have some better days. Best of luck getting your dr to listen and diagnose you properly.Alex Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted October 31, 2012 Author Report Share Posted October 31, 2012 I know exactly how you feel. If I even try to go to the er they always give me xanax, klonopin or ativan. I do have a question about that artucle. I read the criteria but it says that the tachycardia has to be within the fiesta 5-30 minutes but my heart went crazy immediately and went down within 5 minutes. I'm a little confused? Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted November 1, 2012 Report Share Posted November 1, 2012 My understanding is that the HR should be increasing by at least 30 bpm or reach 120 bpm within the first 5 to 30 min. It doesn't have to last that long.If i remember correctly when I was diagnosed my HR spiked immediately upon tilting by 40 some bpm and then by minute 6 it dropped quite significantly. 6 min into the test I fainted. Fainting is not a must for a POTS diagnosis though.In my opinion you fit the criteria.Maybe some other forum members can join the conversation and shed more light on the subject. Please let me know if I can be of more help.Alex Quote Link to comment Share on other sites More sharing options...
peregrine Posted November 1, 2012 Report Share Posted November 1, 2012 Pretty much everyone has a brief spike in heart rate when they stand - the difference between folks without POTS-type issues and those with them is that most folks without POTS, etc don't sustain the high heart rate; it goes down back towards their baseline after a brief period (I would say less than "a few minutes" but I don't have hard numbers for you) once their body has adjusted to being upright. The rest of us, of course, don't adjust so well, so we stay high while upright, give or take. Sustaining 150 for several minutes does seem abnormal to me even if you do drop back to 115 (though I'm not a doc, of course). Quote Link to comment Share on other sites More sharing options...
abbyw Posted November 1, 2012 Report Share Posted November 1, 2012 I know that when my doc did a poor man's ttt, they only checked my pulse after 4 minutes of standing. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted November 2, 2012 Author Report Share Posted November 2, 2012 That's so weird. Im so confused about this test. My heart rate jumps IMMEDIATELY. and always by 30ish bpm. What I'm confused about that test is the 5-30 minutes, so does that mean the first 4 don't really count? Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 3, 2012 Report Share Posted November 3, 2012 I haven't been on for a few days, but after several positive urine tests the endo at Hopkins told me that he was %100 sure that I had a tumor but It was just to small to see.Fast forward almost 6 years I ended up being admitted to a hospital and was given a tilt table test. I do have pots... no PHEO! I think the big symptom difference between the two ( hyper POTS and pheo ) is the onset of symptoms with standing and positional changes. I don't know anyone with a pheo but endocrinologists get pretty excited with the prospect. Just before I was diagnosed correctly, an endo in philly told me that she was sure that I had a pheo as well. The urine test is a 24 hour collection so as I was moving around my results were postive. At nih they did many blood draws when I was in a hospital bed ( negative).Not to say that I don't have symptoms of pots when I am laying down or seated. I just never got the crazy high numbers that were collected when moving around. I had at least 3 or 4 24 hour urine tests and they were all high enough to indicate a tumor. Mayo clinic formally diagnosed me with the hyper pots ( also hyper pots does not mean that you have high blood pressures). Mine go too high and too low. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted November 3, 2012 Author Report Share Posted November 3, 2012 Wow, that makes mr worried about my test. I believe ill come up positive because I already have high cortisol levels and I have the symptoms of hyper pots. Since you have hyper pots in interested in how your heart rate works when your laying to standing and how long It maintains the high heart rate. I always go at least 30 bpm from a down position to an upright one but my heart rate levels off in about 5/6 minutes. Upon standing it throbs so bad I can dee my heart rate in my vision and my head pounds. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted November 3, 2012 Report Share Posted November 3, 2012 (edited) Pheochromocytomas can result in numerous presentations, almost all of which involve high blood pressure rather than low. ( If very small it might not.) A POTS like presentation is quite possible. ( Meaning one might have a positive tilt test and POTS symptoms )Pheo's are very rare ( like 1 in a million ) I still recommend anyone with Hyper POTS be tested, as who knows? The better tests are 24 hour urine or plasma metanephrines. Norepinephrine and epinephrine that are often tested for POTS itself can show it. Mine were sky high, far beyond the normal limit. (over 10 times) I contacted a world POTS expert who e-mailed a world Pheo expert who said this could not be due to effects of any medication I was on. He said " if accurate, this must be a Pheo." My endocrine doc, had already ordered scans and a Pheo expert consult. The pheo expert said there was a 99% chance I had it. The radiologist read my MIBG as positive. The Pheo specialist at this major center said it did not match the adrenal location of the CT and I did not have a pheo, then at my appt. said there was a 50% chance I did. He recommended pelvis and head scans. I said why not repeat the labs. He did, then said I did not need the other scans. I went to another Pheo specialist, a surgeon who said he was also a medical expert on pheos, he said he wanted to do a PET, until hearing the other specialist did not feel I had it and then felt it was not indicated. Lastly my primary felt the scans should be sent to another radiologist. That radiologist said the location of enhancement on the MIBG correlated "exactly" with a very small area on the CT of enlargment. That was all in the spring and it was a nightmare as I was suffering extreme symptoms. I have not seen more pheo doctors since then. I will probably do a follow up lab later and if my symptoms become more severe particularly high blood pressure, that will be an indication for sooner rather than later.My reading shows about a third of pheos are missed and a third are surgically aproached when nothing is there.Based on my above experience I would say labs first, and a second opinion. Edited November 4, 2012 by corina medical advice Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 4, 2012 Report Share Posted November 4, 2012 I had a MIBG scan that they thought was positive. ( a shadowy spot on my bladder). I also had PET scans ( actually at NIH you are a guinea pig so after a week there I am pretty sure I glow in the dark).It does make sense to rule it out. As rare as they are every doctor seems to know about Pheos from medical school. I can't speak to my cortisol level. I don't know what it is. As for the heart rate jump, mine has changed over time. It was in the 170 ( from 60's just from standing. Yesterday I took my hr and bp. It went from 50 to 93. Still well over a 30 bpm jump. but not 110 bpm.I wish I had ruled out POTS before I had all of testing for the Pheo. I had never heard of POTS at the time.Maybe a second opinion is a good idea. It couldn't hurt. After all the testing went through for a Pheo, I am afraid to even get dental x-rays. Another thing to consider is that when done properly, I think the plasma test for a Pheo is more accurate than the 24 hour urine test. I hope you get answers and feel better soon. Quote Link to comment Share on other sites More sharing options...
southbel Posted November 5, 2012 Report Share Posted November 5, 2012 What a timely thread. Just turned in my 24 hr urine because the Endo my Cardio sent me to is thinking a Pheo too. Statistically speaking, as rare as POTS is, I think the Pheo is even rarer and said as much to the Endo. I am starting to get doctor fatigue from them trying to find the root cause of my POTS so I don't know how willing I am to go down this Pheo trail. I also get high blood pressure on standing, causing this suspicion. I am just getting to where my meds are having some effect - I don't know if I want to have more doctors dipping their hands in there, so to speak. Quote Link to comment Share on other sites More sharing options...
cmreber Posted November 5, 2012 Report Share Posted November 5, 2012 I was also tested for pheo prior to my hyper pots diagnosis. In fact, because that came back negative, that was the reason I was sent to Stanford, because my cardiologist didn't know what else to test for. It was the cardiologist specialist there that first diagnosed me with POTS and then that was confirmed at the Mayo Clinic. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted November 5, 2012 Author Report Share Posted November 5, 2012 Can you explain the specifics of your diagnosis? As far as the ttt if you had it? Like your resting heart rate, when your HR peaked, blood pressure fluctuations and so forth? I think I have hyper pots but don't understand the diagnostic criteria. And southbel, let me know what your results are! Quote Link to comment Share on other sites More sharing options...
southbel Posted November 5, 2012 Report Share Posted November 5, 2012 Can you explain the specifics of your diagnosis? As far as the ttt if you had it? Like your resting heart rate, when your HR peaked, blood pressure fluctuations and so forth? I think I have hyper pots but don't understand the diagnostic criteria.And southbel, let me know what your results are!Will do! I honestly doubt I have a pheo given it's rarity though but wouldn't it be nice to have something that can just be removed and bam - you're cured. Quote Link to comment Share on other sites More sharing options...
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