Tilt Table Test: 30-60 Heart Rate Increase But Not Pots?

[IceSkate]

Hello everyone,

I am new to the forum. I recently had a tilt table test. The official report says my laying heart rate was 50-60 bpm. My standing heart rate was 90-120 bpm (it fluxuated between these numbers). My cardiologist says I do not have POTs. I asked him why he thinks I do not have it even though the numbers went up over 30. He only replies with "I strongly believe you do not have POTS." I sent him this article from Vanderbilt university: http://www.ncbi.nlm.nih.gov/pubmed/16943900 and asked him to please explain why I don't have POTS based on the numbers. He didn't, and only said "I don't think you have POTS." He said to talk to my internist. She said "I agree with the cardiologist" but wouldn't answer my real question about the numbers.

Is it possible I do not have POTS based on these numbers? The article says a normal heart rate rises 10-20bpm when standing. Mine was 30-120. I started having horrible fatigue that got so bad last summer I could barely carry the laundry basket up the stairs. I also had to brush my teeth laying in bed! I had horrible abdominal paints, but every test can back normal (no celiac, no ulcers, etc). They found last spring I have hypothryoidism, and my levels are corrected with levothyroxide. I have also experienced severe lightheadedness at times. These all seem to indiciate POTS.

I'm open to it not being POTS, but I'm wondering if anyone has any thoughts about my numbers? Is there something I'm missing... they seem to say POTS.

P.S. I've also had a weird symptom for the past two months: inability to taste anything, and full-body numbness (not tingling... it's just like my skin has a severe lack of sensation). I haven't heard of these relating to POTS. I could have something different, or I could have POTS and something different, I could have POTS, but I can't have nothing. The first doctor I saw thought it was just anxiety.

Thanks

[janiedelite]

you meet the definition of pots

[MomtoGiuliana]

I agree--I believe increase in hr by 30 bpm+ from lying to standing is the diagnostic criterion.

Are they open to treating your symptoms, even if not open to diagnosis?

Loss of taste is not typical POTS (you can look on the website for a list of typical symptoms). However fatigue and lightheadedness are standard symptoms. Numbness is a possible symptom, but not one that I have seen come up a lot on the forum. Many POTS patients do also have digestive complaints.

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

Have you seen a neurologist?

[IceSkate]

Hello,

Thanks for the reply! I have spoken to the internist about a referral to a neurologist, but she wants to see me first... I don't know why. It won't be until next Wednesday.

I know that I have POTS because of some of the symptoms as well as the tilt table test results. It's so strange that the doctors say no, but will not say why they won't say no. I've never seen a doctor behaive this way.

I may have something else, and perhaps POTS is the result of that. The full body numbness could be making my tongue numb. I don't know. None of the doctors do. I'm hoping the neurologist can help.

I'm also nervous about having to talk to the internist. I'm bringing the article about POTS... It says right there that 30 or higher is POTS. My blood pressure did not change, but the article, as well as this site, says it does not have to.

Hopefully I'll get down to the bottom of this. I'm really not feeling well, but sometimes I'm OK. It really seems like POTS, but perhaps something else on top of POTS. I'll keep everyone posted. Thanks for your support!

[kclynn]

Do you have someone you can take with you to discuss the results? It often helps to have a second set of ears.

[Chaos]

Sounds like you may be seeing the same cardiologist I've seen. LOL I've been tested at both CC and Mayo in their autonomic labs and been diagnosed with POTS and NeuroCardiogenic Syncope both places. My local cardio insists I don't have POTS and instead have orthostatic hypotension. Got to love these docs sometimes.

Taking someone else along does help sometimes. Otherwise you may need to try to find another doc who is more familiar with the disorder. Trying to get a doctor to listen who doesn't want to hear is a complete waste of your energy....which is something most of us don't have to waste!

[IceSkate]

Thanks so much for your responses, everyone.

I will try to bring one of my parents with me. I think having another set of ears is a good idea as kcmom and chaos suggested.

I think I will need to see another internist for this as this one doesn't seem to know about POTS. I saw her after seeing an endrocrinologist who has heard of POTS, and suspected it, but wanted me to get established with an internist. The internist said my symptoms did not match with POTS, but I definately know fatigue, lightheadedness, and abdominal pain do.

I guess I will see the internist on Wednesday, get a referral for a neurologist, and also talk to the internist about POTS with my parents. Then after that appointment or after the neurology one, I'll look into seeing another doctor.

Does anyone have advice for what to ask in a neurologist? Perhaps you can't really ask for anything specific. I don't think they have autonomic specialists here. Also, I'm not entirely sure what the symptoms of inability to taste and full body numbness are about, so I wouldn't know what to ask for there. I'll keep everyone posted. Thanks for such a wonderful place to get information that unfortunately isn't available in a place where it should be (...my hospital...)!

[Chaos]

You might want to call some of the neurologists in your area and see if any of them are familiar with dysautonomia/POTS etc. I saw a local neurologist after 4 different doctors told me I needed to see a neurologist. He absolutely REFUSED to talk to me about the autonomic issues. Said he didn't know why I was "bothering (him) with that when it was a cardiovascular problem." Funny, I thought the autonomic NERVOUS system would fall under the perspective of a NEUROLOGIST. But apparently not, according to this guy. So, you might not want to bother seeing just any neuro unless they have some understanding of this issue or you'll just come away feeling bad and frustrated again.

Sorry this is the way medicine is practiced these days but it seems to be a common experience for a lot of us.

[Ernie]

Hi,

Get a second opinion with someone who is familiar with POTS.

[ramakentesh]

You can get excessive tachycardia from postural hypotension.

But if your blood pressure remained stable then your characteristics would be gold standard indicative of POTS.

The doctor may be using a definituion of POTS that only includes sympathetic excess - Ive heard of some doctors that catagorise what is normally all accepted to be POTS into groups with low MSNA as general orthostatic intolerance and high MSNA as true POTS. This is not a widely accepted definition.

[IceSkate]

Thank you, ramakentesh.

The cardiologist who said I didn't have POTS did a lot tests for blood pressure, such as checking the blood pressure in my ankles. I don't know, unfortunately, what he is thinking because he won't tell me what he's thinking when it comes to diagnosing POTS or not.

I called my local hospital to see if their neurologists treat POTS or autonomic disorders, but they called back and said no. I guess I'll try getting in and see about an MRI for the symptoms of numbness and inability to taste as they might be something else.

I'm just frustrated because I'm not sure what's happening to me. I've been living at home and looking for work since graduation last spring, but I'm scared of moving and working because I don't know if I can do it. I'm just not the mood to deal with a doctor who isn't open to discussing things. I feel so bad afterwards... and I can't seem to find a doctor who knows about POTS.

[Katybug]

IceSkate, DId you check the list of doctors that treat dysautonomia on this site? You may be able to find a doc on here. The list is in the POTS Place section of the site.

[IceSkate]

Hi Katy,

Thanks for the info. I have checked the list. I am a few hours from the mayo clinic in MN. I don't know now if I even want to go to a doctor.

I went to an internist today, really just to get a referral to a neurologist. Not because of POTS, but because for the past two months I have experienced ageusia (the complete lack of taste, as opposed to just a minimizing of taste) as well as an alarming degree of numbness throughout my entire body. These could be from POTS, but might not. I have no idea. I would think ANY doctor would send someone to a neurologist if they had these symptoms (always present) for two months to at least rule anything out. I've had blood tests, and I only take levothyroxine for hypothyroidism, but has been corrected since Spring.

The doctor originally said I would have to wait a month to see her because she wanted medical records from a hospital in another city where I had lived. Someone I know recommended calling her and asking for a referral because this could be the sign of something serious... but maybe not... still wouldn't you think a patient should see a neurologist if you can't find any other explanation?

The doctor ultimately gave me the referral when I asked. However, she thinks I do not have POTS and that I have anxiety.

I certainly do have anxiety after that visit!

Anyway, she thinks I do not have POTS. However, she cannot articulate why I do not have POTS. I had a tilt table test where my heart rate went from 50-60 laying to 90-120 standing.

The cardiologist also would not articulate to me why I did NOT have POTS. I never was confrontational or said "I HAVE THIS!" because I'm not like that. I just asked him why he thought I didn't when the numbers were like this. He only replied twice "I do not think you have POTS."

So someone in their 20s develops the complete inability to taste (which is extremely rare according to my research) and full body numbness (I can still sense things, but it's like the nerves are very weak) has these things because of anxiety? (yeah right...) I am not saying I have these because of POTS, either. Maybe I have something else that causes the ageusia and numbness and also caused POTS. I don't know... but I really really doubt it's because of anxiety.

Also, the doctor said "Well, what does it matter if we tell you that you have POTS or not because we can't treat it here." However, both an endocrinologist who first mentioned POTS to me and my cardiologist both said they had treated people with POTS with betablockers. This internist was incorrect. Also, it's crazy that I can't get an answer from my cardiologist about tilt table tests and POTS when apparently he has diagnosed people with POTS. Now I'm being labeled as anxiety-ridden and thus can't get the help I need.

I think I have POTS, but it's not that bad right now. I don't even know if going to a doctor is worth it anymore. I'm kind of scared to go to doctors now. I never had that in my adult life until this.

I WILL see a neurologist because it just seems like a smart thing to do for the two weird symptoms of whatever (maybe not POTS related).

But don't worry about me! I'm doing fine and will keep on truckin'.

[janiedelite]

Keep on truckin'! There are docs out there who will help. My PCP isn't an expert in dysautonomia, but she vowed to send me wherever I needed to go. After a dozen specialists, I finally found a neurologist who was willing to try to help as well and he got me into Mayo.

I went to Mayo, Rochester, where I was formally diagnosed with POTS and small fiber neuropathy. Having a diagnosis from a reputable clinic like Mayo helped in regards to disability and helped give validation to my symptoms.

[sandymbme]

I know it is scary to pursue further testing and exams when you have had bad medical experiences. Unfortunately, due to the rarity of the condition and relatively small number of doctors who treat it, you will find that most of us have had the same sort of experiences. I have my formal dx's from the Cleveland Clinic, and am under the care of Dr. Grubb (who is one of the world's foremost experts on POTS, not to mention a heck of a nice guy!) and regularly have local physicians tell me I am anything from a drug addict to a hypochondriac to crazy. Just remember that no matter what any given doctor thinks, you are the foremost expert on YOU. If things have changed dramatically with your health, you really have to keep truckin' until you find a doctor that is willing to help you resolve your issues, or at least develop a good treatment plan. I highly recommend going to a center like Mayo or Vanderbilt because having an accurate dx is really vitally important to managing your health.

As for your symptoms, I have constant numbness in my face, hands and feet. After much poking and prodding, it seems to be the consensus that it is either due to poor circulation from POTS, or related to my EDS. (Which is the cause of my POTS.) One of the many reasons to continue to look for answers is that given your TTT results, if you do NOT have POTS, someone needs to explain why you are having the symptoms and results you have. I would phrase my questions to difficult doctors like this, "These results seem to indicate a problem, and another of my physicians has suggested that they suspect POTS. Has that been conclusively ruled out? I would like further testing (evaluation for EDS aka Ehlers-Danlos Syndrome, blood volume testing, evaluation for small fiber neuropathy, etc) to determine what the root cause of the problem is. In the meantime, how do you suggest that we treat my current health issues, as none of my symptoms have resolved?" Sounds stilted and silly, I know, but I have learned that rather than asking them to explain why they disagree with my diagnosis, but instead asking them how to solve the current problem sometimes yields better results. For instance, if that cardio did not think you had POTS, what does he think is causing the anomaly, and does he have a treatment plan? In any case, I agree that you need new doctors. If your current doctor is dismissive of your concerns they are not healing you, are thus are wasting your time and money. Go to Mayo, or Vanderbilt, Cleveland Clinic, even get on the wait list to see Dr. Grubb, it is well worth the time and effort to be legitimized and have your concerns addressed.

Sandy

[jennyg97]

I don't have much to add to this conversation that hasn't already been said, but I wanted to specifically thank Sandy for her comments, particularly the suggested phrasing for talking to doctors who disagree with a diagnosis. This seems like an exceedinigly reasonable approach and I can see how it would come off less defensive and conflictual than other approaches. Thanks for sharing your experience!

[tinkerbella]

Hi Katy,

Hang in there ~ Good Luck...I hope you get some answers soon. I can't stand difficult docs who won't even explain what they are thinking, but you can get your notes and see what they were thinking and everyone is allowed a second opinion.~

x's

Bellamia~

[IceSkate]

Thanks for the advice, Sandy!

So even when you receive a diagnosis from a reputable doctor/institution, your local doctors will treat you like this is all your in head? That's unbelievable... I'm just feeling so confused about my next step. I don't even know how to get in to Mayo. Do you need a referral from a doctor? I doubt that will happen... I just feel like if doctors won't take me seriously (as having ANYTHING... POTS or something else... even in the face of objective evidence)... how will other people take me seriously? I don't know what's wrong with me, and I don't know how to explain it to other people.

I don't know if I should see a neurologist here now (it's in about two months) for the inability to taste and numbness... but now you mention numbness as one of your symptoms, I don't know if I should try to see a doctor at Mayo for POTS... I just feel like a freak and that I'm going to continue suffering forever.

I don't even know what good it will do because I'll have to come back and have no doctors who will believe me (if they say I have POTS at Mayo...). If I do have POTS, I have to say that sometimes the non-medical "problems" relating to this illness are just as bad as the medical ones.

[sandymbme]

It is true, there can be a lot of frustrations in building a good medical team. And in dealing with this illness, you need a team. It should include a good support system, supportive, knowledgeable doctors, and as much reliable info as you can get your hands on. There are tons of great resources and links, as well as general info, on the main Dinet site. I know they are currently updating the physician list, so keep checking back to see about finding a good doctor close (relatively speaking, most of us travel quite a ways for our specialists.) to you. You should think of your primary care physician (PCP) as the hub of a wagon wheel, and each of your specialists as the spokes. Your PCP should be aware of all the meds prescribed, all the treatment plans suggested, coordinate care and make referrals. You need to have one doctor that knows what everyone else is doing, so that your specialists don't inadvertently make you worse by prescribing drugs/regimens that are contraindicated. From what you describe, your current doctor is not fit for that role. I interviewed several until I found mine. I literally called offices and asked about PCP's backgrounds, interests, specialties. Just because they don't have an official "specialty" does not mean that they do not have their respective areas of interest. For instance, my doctor is very into fundamental/integrative/holistic medicine. So I knew she would be more open-minded. She was just starting her private practice, and had the time available to help me pursue getting the very best care and evaluations possible. She also started out as an ER doctor, which meant she already knew the vast majority of specialists in my city, and knew who was good to send me to.

Your specialists should each help support you "rolling along". They should be willing to work with your PCP to manage your care, sharing information, results and med changes with your PCP. They should be helping you get any of the supportive care you may need. Your "team" should be able to help you file paperwork with insurance and/or disability and/or your employer. The focus should be entirely on getting you and keeping you as well as possible. I am truly fortunate that I have an amazing team. Sadly, when you go to the ER it is a toss up as to the level of care and understanding you receive. Sometimes I have a great doc who understands and is willing to talk to the people who can best guide them, sometimes I get a rude resident who is so impressed by their shiny new "MD" that they really have no interest in a word I say. When you have a rare disease, this is sadly part of the package. But you can not let that deter you from advocating for yourself, and fighting to get the very, very best care possible. For one, it will make you feel better to take control of your healthcare decisions, and it is your right to do so. For two, if (and from your numbers, it sure looks like this is the case) you do have POTS, trying to ignore it is really not an option. It does not disappear untreated, and you can't wish it away.

As for the "doctor speak" thanks so much for the compliments, but I can't take credit. My mom is a nurse of decades of experience, and she gave me a very similar suggestion when I had a hospitalist treating me that was dismissive and demeaning, and was driving me batty. I just kept getting sicker, and he kept dismissing outright any suggestion or request I made. Mom told me that most doctors are very solution oriented, and care most about answers to problems than problems. She told me to stop focusing on what was going wrong, and why it was going wrong, but to simply explain my symptoms to the best of my ability and ask how he suggested to resolve the problem. It worked like a charm! The next day I saw the very kinds of specialists I had been pleading for, that he insisted I did not need. Because then it was HIS idea. Which was fine, he could power trip all day long as long as I got the care I needed! I really hope this helps. Please don't get discouraged, you are the very best advocate for yourself!

Sandy

[rubytuesday]

I had 2 TTTs a year apart and did not faint with either. After the first TTT cardiologist put a 24 hour event monitor on me despite my pleas for 30 day event since I was not experiencing near syncope on a daily basis at that time. The 24 hour event monitor showed nothing. I had another episode and always track the BPs/HRs to use in communciating w/ cardiologist/PCP and he did do a 30 day event monitor that showed some kinds of runs of tachycardia. He'd called me within about 2 1/2 weeks of the test initiation and started me on med for that. I continued having these near syncopal episodes (since Jan 2009), randomly. I had multiple Rx adjustments and then to no meds at all.

By the spring of 2010, still having symptoms, cardiologist repeated TTT with a different cardiologist/physiatrist. Again, though I did not faint, that cardiologist was convinced I had 'neurocardiogenic syncope' and started me on Florinef. Up through Dec. 2010 it was a bunch of med trials without effect. In March 2011, both cardiologist and PCP were convinced that I had POTS and referral was made to Dr G.

By the time Dr. G saw me Oct. 2011, he said looking at records a year ago I did have POTS but now, it's orthostatic hypotension. I feel so blessed to have doctors who stuck with me. And since they have, I have called more attention to the EDS III that I have, trying to sort out issues with immunocompromisation, hemorrhaging, GI problems, all the 'itises'. My cardiologist told me that dysautonomia has nothing to do with EDS and my research shows that there is a correlation and that the very cardiac/dysautonomia specialist, Dr G, he was referring me to was invited to be guest speaker at the National EDS Foundation's Convention this year, speaking on dysautonomia, as was my geneticist. Now both my cardiologist and PCP (although my PCP told me she has never seen someone with EDS before as it is so rare) have been willing to make suggestions as to handle problems as they occur (as far as stomach/GI/sleep/fluid retention issues and now this orthostatic hypotension).

I have a complex medical/surgical history and each time I go to a specialist, no matter who refers me, I always ask that my PCP receives a copy of the reports and tests. My cardiologist was a young 'newer' member of the heart group, so perhaps that is why he was willing to stick with this (also could have been fearful that if something was missed without follow-ups, he could be liable). When all these things had first started, I talked to my rheume about the 'sensations' (sudden warmth, weakness, tremoring, nausea, ears ringing, vision dimming). She said 'nothing rheumatological. So I asked my pulmonologist about these 'sensations' (he said nothing pulmonary). I knew it wasn't in my head but didn't know what it was. I dismissed 3 of the episodes since they had only occured about once/month and tried to rationalize them to myself. When the 4th episode hit--and hit me much harder, landing me at doctor's who sent me to hospital right away, that was when I was kicking myself for not contacting my PCP before things got to this point.

It takes a lot of persistance and being your own advocate and arming yourself with the research to back it up. Sometimes you play the role of educator of your physicians and as my neurologist said to me when she said 'nothing neuro'--please call me and tell me what you find out because we doctors are always learning. When my PCP said she'd never seen EDS before, I told her to take a good look at this face. So far we are walking this journey together. I think it's pretty much symptomatic treatment and knowing restrictions and following instructions and making sure that everyone in the hospital knows what you have. I wear the CareMed bracelet that stores all the info.

It stinks to have professionals dismiss you when you know your body. You know when something is different. One approach I have learned in 'manipulating' the docs if I think I may need tested or referral is using the 'would there be any value' to doing this or that, or 'could you help me understand' this or that. Some doctors just have big egos and cannot stand that they do not have all the answers (citing 29 years as hospital nursing/care management).

[Chaos]

When my PCP said she'd never seen EDS before, I told her to take a good look at this face.

Ruby- that's funny. When I saw the geneticist who diagnosed my EDS-HM her comment was "I've seen a lot of people with EDS but never anyone with Dysautonomia." After she spent 2 hours with me talking about it....I suspect she's going to find a lot more of her EDS patients have ANS issues.