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Why won't they diagnose POTs even though the results are clear?


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I just had a follow up appointment at neurology and I am feeling very confused and frustrated. Every time they do an orthostatic test it clearly shows my hr increases by more than 30 bpm, I have all the symptoms of pots, and orthostatic hypotension can be ruled out.. but because I was negative during the TTT, they refuse to give me a diagnosis.

I asked the nurse I saw at neuro about pots and she said my autonomic testing did not support pots but could not give me an explanation why when I asked - I even pointed out that per the tech's report that I read that my hr went from 66bpm to 100bpm at 1 min mark. She said she didn't know why because she doesn't read the reports, it was a different doctor who reads them.. when I asked that doctor previously, his response was that he reads it off of the computer program and doesn't look at the techs report or my symptoms. So I asked the nurse I saw yesterday if it could have been a false negative and she again said she didn't know and wants to see what cardiology has to say. Yesterday she redid the orthostatic test and my hr resting was 87, standing at 1min was 127, and at 3 mins was 118. She ruled out orthostatic hypotension (she even said this). She said "I can't give you a diagnosis but with our pots patients we start them with PT so I'm going to give you a referral there, and we want you to drink 80 oz of water a day"

My cardiology appt is coming up in a couple weeks. I am just wondering why she would want to start treatment for pots without a diagnosis? She couldn't answer any of my questions about why the TTT were the way they were. I'm just so confused because if she doesn't think I have pots then it wouldn't make sense to start treatment for it would it? Or she does think I have it but then why wouldn't she diagnose it? Am I right to be upset in this situation, or should I just be happy she is getting me treatment?

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Maybe she feels PT is not going to do any harm or drinking more water. You could ask the cardio to do another tilt test. I would be pissed about the situation so don't blame you. You can always seek a 2nd opinion. Most likely even with a concrete diagnosis they are only going to treat the symptoms to improve your life quality and not probe deep for possible causes. I am still looking for the root cause(s) of my condition so it can be cured so I can have my complete life back. If you can afford it a functional medicine doctor maybe a good option. 

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@penguin2I would not stress over this too much for now. Reading you are not orthostatic is probably a good thing. Your HR changes are in tune with POTS IMO but saying that i do not have POTS but have seen the same hr changes upon standing at times then nothing but a drop in bp with no changes in hr. 

Either way PT is a good thing. I have benefited from it more than one could think.

Not sure what meds you are taking but i am sure the Cardiologist will help with the spike in heart rates.

Hang in there. 

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What was your heart rate at the 10 minute mark? It is my understanding that if your HR regulates itself and your BP normalizes itself by the 10 minute mark, no matter what happens in between, it is considered a normal test. They expect different swings in the beginning. They say everyone does that to different degrees. At least, this is what I remember from my test years ago. Ask for a full copy of your report so you can see your numbers all the way through. It may shed some light on your situation. 

I hope this helps explain. I know it doesn't help your situation. 

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18 hours ago, penguin2 said:

Every time they do an orthostatic test it clearly shows my hr increases by more than 30 bpm, I have all the symptoms of pots, and orthostatic hypotension can be ruled out.. but because I was negative during the TTT, they refuse to give me a diagnosis.

@penguin2 - TTTs can be negative at times, they are not the gold standard. Physicians familiar with POTS know that, also many TTTs are not properly interpreted, depending on the expertise of the physician. Orthostatic testing that shows the increase in HR as well as documented symptoms ( not even necessary during the test!!! ) should be enough for a definitive diagnosis: I know of many patients that were diagnosed this way despite the TTT being unclear. I was diagnosed with HPOTS by my specialist although 3 cardiologists misinterpreted 2 TTTs, one as NCS and one as normal ( despite the fact that it clearly showed the increase in HR and symptoms ). 

 

18 hours ago, penguin2 said:

when I asked that doctor previously, his response was that he reads it off of the computer program and doesn't look at the techs report or my symptoms.

This is clearly not proper practice. The HR increase - if sustained - clearly shows POTS. The physician needs to look at the whole test, this includes reported symptoms in addition to the "numbers". Plus - your numbers are showing POTS. 

My question is - why does a neurologist do a TTT when it should be a cardiologist reading it? Maybe that is why the physician interpreting it does not know how to read it? I hope the cardiologist will redo the TTT - physicians do not question the interpretation of other physicians, they go by the readings of the test that was done. PLEASE ask the cardiologist for another TTT as a second opinion

Also - increasing fluids is a common first step in treating POTS, but it has to be done in addition to increasing salt intake, or you will just pee endlessly. Compression hose is also recommended. PT can be helpful IF orthostatic and/or exercise intolerance are reported. 

 

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3 hours ago, Pistol said:

@penguin2 - TTTs can be negative at times, they are not the gold standard. Physicians familiar with POTS know that, also many TTTs are not properly interpreted, depending on the expertise of the physician. Orthostatic testing that shows the increase in HR as well as documented symptoms ( not even necessary during the test!!! ) should be enough for a definitive diagnosis: I know of many patients that were diagnosed this way despite the TTT being unclear. I was diagnosed with HPOTS by my specialist although 3 cardiologists misinterpreted 2 TTTs, one as NCS and one as normal ( despite the fact that it clearly showed the increase in HR and symptoms ). 

 

This is clearly not proper practice. The HR increase - if sustained - clearly shows POTS. The physician needs to look at the whole test, this includes reported symptoms in addition to the "numbers". Plus - your numbers are showing POTS. 

My question is - why does a neurologist do a TTT when it should be a cardiologist reading it? Maybe that is why the physician interpreting it does not know how to read it? I hope the cardiologist will redo the TTT - physicians do not question the interpretation of other physicians, they go by the readings of the test that was done. PLEASE ask the cardiologist for another TTT as a second opinion

Also - increasing fluids is a common first step in treating POTS, but it has to be done in addition to increasing salt intake, or you will just pee endlessly. Compression hose is also recommended. PT can be helpful IF orthostatic and/or exercise intolerance are reported. 

 

Nobody would give me a referral to cardiology because my first reported symptoms were nerve pain and palpitations - that's what started all this. Then the dizziness and lightheadedness started shortly after the nerve pain and palpitations. Nerve pain is better now after a stint of gabapentin and chiropractic so that was likely a separate issue. I finally asked for a referral to cardiology after my TTT was normal. 

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2 hours ago, penguin2 said:

Nobody would give me a referral to cardiology because my first reported symptoms were nerve pain and palpitations - that's what started all this. Then the dizziness and lightheadedness started shortly after the nerve pain and palpitations. Nerve pain is better now after a stint of gabapentin and chiropractic so that was likely a separate issue. I finally asked for a referral to cardiology after my TTT was normal. 

Just keep in mind that POTS bp/hr are very distinctive from being orthostatic or neurogenic. Last summer i was scheduled to see a neurologist i backed out. There is a thread on Dinet with a video that demonstrates IMO a true POTS episode i just can't find it.

Hang in there!!  

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8 hours ago, Pistol said:

@penguin2 -  

My question is - why does a neurologist do a TTT when it should be a cardiologist reading it? 

Here the TTT are always the domain of the neurologist because they do them with a whole battery of other tests to check if you have any deficit in the autonomic nervous system. They tend to be quite thorough, mine was 4 full pages of the condensed results and took a full morning for the testing.

For mine which was well positive with a huge orthostatic rise and positive for pots I was sent to a cardiologist who then interpreted the 24 hour holter and blood pressure monitoring. The cardiologist then said that although the heart rate went up significantly on standing this wasn't immediate enough in her opinion to qualify. (Well within the 10 minutes of the TTT definition of POTS though) She also noticed periods of low BP which might be a concern but since they were not causing problems needed no further investigation. (So why was I going to the doctor then?)

My point is that it depends on the doctor. I had a much better experience with this neurologist than with the subsequent cardiologist who is not up on POTS evidently.

 

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6 hours ago, MikeO said:

Just keep in mind that POTS bp/hr are very distinctive from being orthostatic or neurogenic. Last summer i was scheduled to see a neurologist i backed out. There is a thread on Dinet with a video that demonstrates IMO a true POTS episode i just can't find it.

Hang in there!!  

What exactly do you mean by "orthostatic or neurogenic" - are you referring to orthostatic intolerance vs pots? Why did you back out of the neurology appointment? Just trying to understand - do you mean to say that my problem is because I'm being seen by the wrong specialty?

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9 hours ago, penguin2 said:

What exactly do you mean by "orthostatic or neurogenic" - are you referring to orthostatic intolerance vs pots? Why did you back out of the neurology appointment? Just trying to understand - do you mean to say that my problem is because I'm being seen by the wrong specialty?

Well i used the term (orthostatic or neurogenic) as a general term. Being orthostatic comes in many forms or subtypes if you will. Orthostatic Hypotension, Neurogenic Orthostatic Hypotension, Postural Orthostatic Hypotension, Postprandial Orthostatic Hypotension, and yes Orthostatic Intolerance etc...

No i don't think you saw the wrong specialty but i think @GasconAlex said it best "My point is that it depends on the doctor." I too had two TTT tests by the local healthcare Cardiologists and never got a definitive diagnosis as to me backing out of a neurology appointment after doing my research i quickly realized the neuro group was not going to be any more help than the people that did my TTT test.

Hope that helps.    

 

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8 hours ago, MikeO said:

Well i used the term (orthostatic or neurogenic) as a general term. Being orthostatic comes in many forms or subtypes if you will. Orthostatic Hypotension, Neurogenic Orthostatic Hypotension, Postural Orthostatic Hypotension, Postprandial Orthostatic Hypotension, and yes Orthostatic Intolerance etc...

No i don't think you saw the wrong specialty but i think @GasconAlex said it best "My point is that it depends on the doctor." I too had two TTT tests by the local healthcare Cardiologists and never got a definitive diagnosis as to me backing out of a neurology appointment after doing my research i quickly realized the neuro group was not going to be any more help than the people that did my TTT test.

Hope that helps.    

 

Yes that helps a lot, thank you for clearing that up for me! How were you able to get a diagnosis, if at all? Did you end up getting a second opinion at a different healthcare org? I think if cardiology is a dead end I'll get a second opinion at a different organization. 

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20 minutes ago, penguin2 said:

Did you end up getting a second opinion at a different healthcare org?

Yes i went thru UW Madison to get a diagnosis. My Cardiologist is with UW but they also have a clinic that works with orthostatic folks as well. The two teams work well together. Even though i am not able to get any autonomic testing outside of a TTT test or carotid artery massage their take away (in my case they know i am orthostatic and neurogenic) the treatment won't change. So far we have been on track. 

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I think cardiology will be able to help you, at least give you med(s) to manage your symptoms and do more testing to rule out correctible conditions like echo, Holter/event monitor ,stress stress test etc. It would be a good idea if you know who you are going to see if he/she knows about POTS/dysautonomia a head of time. Propranolol has been a helpful med for keeping my heart rate controlled.  It is forgiving meaning if I take too much it does not last long and HR returns to normal in a few hours. When I have episodes of PVCs since being on Lexapro it does not stop them and was told by a cardio it is a weak beta blocker and Atenolol is better for them. but it is a much stronger med at least in me and the time I took it made me feel worse. 

I assume you were healthy before all this started happening. Regardless if you have POTS, sounds like you do, what changed in your body/life that could be the cause? For me a diagnosis is a label. If I can't find the root cause(s) then I have to learn to manage the symptoms the best I can. 

One thing that has helped me a lot especially at the beginning is upper cervical chiropractic. My atlas was way out of alignment. Right after the 1st adjustment I felt better. With this approach I had to go 2 times per week until the adjustment started to hold better. This new chiro I am seeing is using an EPIC table which uses sound waves along with some fancy computer program to make a correction based on several X-Rays. I did not even feel the correction. I have not needed an adjustment in 3 months which is a record for me.

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6 hours ago, DysautonmiaMatt said:

I think cardiology will be able to help you, at least give you med(s) to manage your symptoms and do more testing to rule out correctible conditions like echo, Holter/event monitor ,stress stress test etc. It would be a good idea if you know who you are going to see if he/she knows about POTS/dysautonomia a head of time. Propranolol has been a helpful med for keeping my heart rate controlled.  It is forgiving meaning if I take too much it does not last long and HR returns to normal in a few hours. When I have episodes of PVCs since being on Lexapro it does not stop them and was told by a cardio it is a weak beta blocker and Atenolol is better for them. but it is a much stronger med at least in me and the time I took it made me feel worse. 

I assume you were healthy before all this started happening. Regardless if you have POTS, sounds like you do, what changed in your body/life that could be the cause? For me a diagnosis is a label. If I can't find the root cause(s) then I have to learn to manage the symptoms the best I can. 

One thing that has helped me a lot especially at the beginning is upper cervical chiropractic. My atlas was way out of alignment. Right after the 1st adjustment I felt better. With this approach I had to go 2 times per week until the adjustment started to hold better. This new chiro I am seeing is using an EPIC table which uses sound waves along with some fancy computer program to make a correction based on several X-Rays. I did not even feel the correction. I have not needed an adjustment in 3 months which is a record for me.

The cardiologist I am seeing is the same one who diagnosed someone else I know with pots - so I know he is familiar with it.

I was very healthy before all this and still consider myself to be generally healthy. The biggest things that changed for me is I stopped regularly exercising for a different reason, and then I came off hormonal birth control which I had been on for over a decade. So I tried getting back into my normal exercise and I still retained my strength but I kept getting dizzy/lightheaded/chest pains that weren't normal for me so it scared me. I do know I have a lot of symptoms of hEDS as well, but I don't have a diagnosis for that either so I don't know for sure if that's it as far as root cause. 

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