POTS Diagnostic question

[Potsie1990]

Hi there,

so I think the general conclusion with all doctors is an increase of 30+ bpm upon standing for POTS “within” the first 10 minutes of standing. 

My electrophysiologist that I met today said the tachycardia must REMAIN for the entire 10 minutes.

upon standing, I go from 63 to 112, but at soon as I hit 112, about 5-10 seconds later it drops down to about the 80s.

 

can anyone please give any advice? 

Hes saying it looks more like I have Orthostatic hypotension but my Blood pressure actually increases when I stand. I’m so confused. 93/60 to 104/63

 

[StayAtHomeMom]

All I can advise is get a second opinion. I believe it should be sustained but even if you ignore the 112, 63-80s is still an abnormal heart rate change. 

Was this data collected from an actual TTT?

[Potsie1990]

Hi there, no it was not from a TTT, just an informal one done in office. I’m being sent to an autonomic testing center in west LA and they said they will do the TTT there.

pots is the only diagnosis I’ve had but I’m scared what if that was a misdiagnosis, kind of like everything else I’ve been told. He really threw me a curve ball. 

Thanks 

[Pistol]

Hi @Potsie1990 - as far as I understand the criteria is sustained HR increase within 10 minutes. I am glad that you are getting autonomic testing - they will know how to interpret the TTT and hopefully other tests. As with many other POTS people - a TTT is NOT the golden standard, a good autonomic specialist will interpret your SYMPTOMS before the TTT results. I had 2 TTT's and they both showed something different, the last one was even misinterpreted by the cardiologist doing it. This should not be the case for you since you are going to an autonomic clinic. Best wishes - keep us posted!!!!

[voxel]

Hi all,

My cardiologist (an electrophysiologist) said I have Dysautonomia... not just POTS. He did not perform any tests for Dysautonomia but I had an ultrasound to check the heart physically and a 7-day heart event monitor to check for arrhythmias (none).

I am getting a second opinion to be 100% sure. Do I ask for a tilt table test? What else? My HR will shoot up to 130 (from 80s lying down) upon standing when my blood pressure is above approximately 130/80 and this HR will persistent for minutes (I never stand up long enough to check if longer than 10 minutes and always lie back down).

If I am below 130/80 my HR will only rise a little and not be an issue. I've had HR spikes during driving and standing around... so I sort of understand the dysautonomia diagnosis.

I wonder if my POTS is due to some leg vein issues that developed after I had gallbladder surgery where I was in bed for extended periods of time (maybe 4 weeks total - had pre AND post surgery diarrhea).

Also.. are beta-blockers the first choice in medication for POTS? Just trying to arm myself with information.

[Pistol]

Hi @voxel - I am not sure what he means by "dysautonomia - not just POTS". POTS IS a dysautonomia! It sounds to me that he just does not want to get into it (typical!!!!). Yes - to determine which type of dysautonomia you have you should have a TTT. If you HR AND BP are elevated you should be evaluated for pheo ( blood tests and 24 hour urine sample ) Often a autonomic specialist will check your norepinephrine levels. These are the usual tests that autonomic specialists order to make a diagnosis. In the way of medications - that completely depends on your symptoms and the type of dysautonomia you have. For NCS and POTS they often use BB for the tachycardia, but not exclusively. There is midodrine, SSRI, calcium channel blockers … many options. Once you have a PROPER diagnosis ( good choice to get a second opinion! ) the physician should determine what is best for you. --- The surgery and bed rest could absolutely be the cause of your symptoms, dysautonomia is commonly a result of surgery. Slow reconditioning is the best treatment for that: try to extend the periods of being upright slowly every day. If you currently can be upright for 3 minutes before the symptoms start the get up 3 minutes several times a day and then increase the time you are up every time, even if it is just 15 seconds more. Also - sometimes try to sit down rather than lying down. You body needs to learn to adjust to standing up again and that needs to be done slowly but consistently. Also - drink plenty of fluids and see if compression stockings help, they will prevent the tachycardia and help you be upright longer. You can buy them online or from a medical supply store. You need to find your correct size though by measuring your calf and thigh. Check with a medical supply store, they can measure you. --- I hope all will be well and keep us posted on your progress!!!! Best wishes!

[voxel]

12 hours ago, Pistol said:

Hi @voxel - I am not sure what he means by "dysautonomia - not just POTS". POTS IS a dysautonomia! It sounds to me that he just does not want to get into it (typical!!!!). Yes - to determine which type of dysautonomia you have you should have a TTT. If you HR AND BP are elevated you should be evaluated for pheo ( blood tests and 24 hour urine sample ) Often a autonomic specialist will check your norepinephrine levels. These are the usual tests that autonomic specialists order to make a diagnosis. In the way of medications - that completely depends on your symptoms and the type of dysautonomia you have. For NCS and POTS they often use BB for the tachycardia, but not exclusively. There is midodrine, SSRI, calcium channel blockers … many options. Once you have a PROPER diagnosis ( good choice to get a second opinion! ) the physician should determine what is best for you. --- The surgery and bed rest could absolutely be the cause of your symptoms, dysautonomia is commonly a result of surgery. Slow reconditioning is the best treatment for that: try to extend the periods of being upright slowly every day. If you currently can be upright for 3 minutes before the symptoms start the get up 3 minutes several times a day and then increase the time you are up every time, even if it is just 15 seconds more. Also - sometimes try to sit down rather than lying down. You body needs to learn to adjust to standing up again and that needs to be done slowly but consistently. Also - drink plenty of fluids and see if compression stockings help, they will prevent the tachycardia and help you be upright longer. You can buy them online or from a medical supply store. You need to find your correct size though by measuring your calf and thigh. Check with a medical supply store, they can measure you. --- I hope all will be well and keep us posted on your progress!!!! Best wishes!

Interesting. So if my HR and BP rise I could possibly have Pheochromocytoma? Thanks for info.

90% of my "dysautonomia issues" are POTS-related where I wake up at night with an elevated BP (i.e 135/85) and when I stand up my HR goes bananas (up to 140). Why my BP rises I don't know because on good days the rise is minimal or non-existent. So I will have 3 good days with no issues and 3 bad ones for no apparent reason... the cardio says this is normal and said to return back to work. I said no way.

On bad days, my BP rise constantly (i.e I can be sitting or laying down or napping and my BP will rise to 135+/90 from 108/65). This causes me to wake up every 2 hours at night and during the day I need to constantly drink water or do something to get the BP lowered or the HR will go bananas. Is this common in dysautonomia? I worry there's some other endocrin issue. All blood tests have shown normal ranges except for Renin which is elevated and why I will see an endocrinologist soon

[Pistol]

I am glad you are seeing an endocrinologist since you have elevated renin levels. It sounds that with your symptoms that is the first route I - personally - would also take. Be well!

[RecipeForDisaster]

I'll be interested to how you do because I'm seeing an endocrinologist for help figuring out a diagnosis on 10/30 and I also have high renin. Some have told me it's nothing, some say it's an indicator of chronic hypotension.

[voxel]

10 hours ago, RecipeForDisaster said:

I'll be interested to how you do because I'm seeing an endocrinologist for help figuring out a diagnosis on 10/30 and I also have high renin. Some have told me it's nothing, some say it's an indicator of chronic hypotension.

The endocrinologist I was supposed to visit - said because of my renin levels (2x over max) I should see a nephrologist instead so I found one that would examine me on Oct 4th.

Will update this thread after I do. Renin explains why my blood pressure would yo-yo up and down on bad days. After all regular tests passed, I had to force my primary doc to get tests for renin, aldosterone, cortisol - because I knew something was amiss with these hormones in me.

 

[RecipeForDisaster]

Same with me, i had to work to get my primary to order these tests. Good luck, I'm eager to hear what the nephrologist tells you... for me I really doubt my kidneys are the problem (compared to some chemical telling them to misbehave) , but who knows!

 

My cortisol was okay but my ACTH stim was done at 4pm and required multiple IV sticks. I guess that time of day is not right for a true test, and I hope that if I have to do it again, they'll put an IV in this time.

[Guest KiminOrlando]

@voxel

If you have a doctor that was smart enough to know that there is a distinction between POTS and dysautonomia, stick with them. And I'm jealous. I want that doctor's name because I spent 25 years in Orlando looking for help and never found anyone who knew this.

I need to write you back but I have been very, very busy. I have not forgotten about you.

Kim

[voxel]

@KiminOrlando @RecipeForDisaster

An update:

I saw an endocrinologist anyhow because they had an immediate opening but the doctor was so inexperienced or didn't care - she ignored my symptoms (polyuria, blood pressure changes, electrolyte issues, renin high, etc) and only focused on my insulin resistance issue. Hopefully yours will be more experienced and not brush off symptoms.

I'm still seeing an nephrologist this upcoming week for the high renin. There's something amiss with my body because when I'm dehydrated (my blood is thick and doesn't flow well for glucose tests) I still urinate a ton. Or is that normal? It's also odd because my diet is high salt (I eat salty foods but I don't ADD table salt) and renin is produced when sodium is low which I doubt happens to me.

Then I saw another more experienced cardiologist for a second opinion (first diagnosed me with dysautonomia - and said not POTS) who suspects I have pheochromocytoma from my symptoms which started two years ago but only regularly flared up in the last 8 weeks. He doesn't think it's dysautonomia because he says I should be experiencing blood pressure drops rather than blood pressure rises intermittently. I'm not entirely sure that is true... but it is true that my blood pressure and HR only rise. I don't experience low BP or low HR ever. 

So over the next two weeks I'm collecting 24 hr urine samples and getting blood tests on "bad" days when I experience these BP and HR spikes These bad days are less frequent but I believe I can trigger it by overexerting myself by exercising then waiting 10-15 mins for a sudden BP spike to say 156/98 from 108/73

This forum has been great info. I feel I can eliminate POTS because I don't exhibit the symptoms consistently and a TTT would be pointless, but dysautonomia or pheochromocytoma are still possibilities.

[jklass44]

8 minutes ago, voxel said:

He doesn't think it's dysautonomia because he says I should be experiencing blood pressure drops rather than blood pressure rises intermittently. I'm not entirely sure that is true... but it is true that my blood pressure and HR only rise. I don't experience low BP or low HR ever. .

Well, in my opinion, that sounds like a doctor that is not well educated on POTS... There is more than one type and hyperadrenergic POTS may actually see an increase in blood pressure upon standing up. 

Regardless, it's good that they're testing you for pheo and that you're seeing a nephrologist soon. 

Good luck with everything, wishing you all the best!

[Guest KiminOrlando]

Yes, hyperPOTS is a thing. Often doctors only think of POTS being low BP. Curious to know his definition of POTS. 

[Pistol]

I agree with @jklass44 - orthostatic hypotension and NCS are a type of dysautonomia and both cause a drop in BP, but elevated BP as well as BOTH (hyper-and hypotension) are seen in POTS. So your specialist is actually incorrect. But I am very glad you are getting tested for Pheo - that is usually a rule-out diagnosis everyone with POTS symptoms and elevated BP should be tested for. Good luck!

[StayAtHomeMom]

16 hours ago, voxel said:

@KiminOrlando @RecipeForDisaster

An update:

I saw an endocrinologist anyhow because they had an immediate opening but the doctor was so inexperienced or didn't care - she ignored my symptoms (polyuria, blood pressure changes, electrolyte issues, renin high, etc) and only focused on my insulin resistance issue. Hopefully yours will be more experienced and not brush off symptoms.

I'm still seeing an nephrologist this upcoming week for the high renin. There's something amiss with my body because when I'm dehydrated (my blood is thick and doesn't flow well for glucose tests) I still urinate a ton. Or is that normal? It's also odd because my diet is high salt (I eat salty foods but I don't ADD table salt) and renin is produced when sodium is low which I doubt happens to me.

Then I saw another more experienced cardiologist for a second opinion (first diagnosed me with dysautonomia - and said not POTS) who suspects I have pheochromocytoma from my symptoms which started two years ago but only regularly flared up in the last 8 weeks. He doesn't think it's dysautonomia because he says I should be experiencing blood pressure drops rather than blood pressure rises intermittently. I'm not entirely sure that is true... but it is true that my blood pressure and HR only rise. I don't experience low BP or low HR ever. 

So over the next two weeks I'm collecting 24 hr urine samples and getting blood tests on "bad" days when I experience these BP and HR spikes These bad days are less frequent but I believe I can trigger it by overexerting myself by exercising then waiting 10-15 mins for a sudden BP spike to say 156/98 from 108/73

This forum has been great info. I feel I can eliminate POTS because I don't exhibit the symptoms consistently and a TTT would be pointless, but dysautonomia or pheochromocytoma are still possibilities.

I was diagnosised with POTS. I did a TTT twice and both showed it. My BP and HR don't drop. My BP is usually pretty steady and normal. My HR shoots up. Without meds I average 80 laying, high 90s sitting, and 120 standing. I don't know the exact numbers on my second TTT but on my first one my HR stayed above 130 the whole 45 minutes. And no passing out either. Some people with POTS can have fluctuations with BP but fluctuations in BP doesn't rule out POTS. Square/rectangle sort of thing.

It does seem like your doctor's are at least listening to you somewhat. And that is always a good thing. I hope they find out what is going on soon. 

[voxel]

On 9/21/2018 at 6:36 AM, RecipeForDisaster said:

I'll be interested to how you do because I'm seeing an endocrinologist for help figuring out a diagnosis on 10/30 and I also have high renin. Some have told me it's nothing, some say it's an indicator of chronic hypotension.

So the nephrologist says the high renin is meaningless without high aldosterone (on the upper end but not crazy). He doesn't need to see me again (kidney unlikely to cause my symptons) and say I should continue with the pheochromocytoma tests and go back to my endocrinologist with the future test results. He doesn't think the cardiologist should be handling pheo... which I sort of agree but the cardio was the first doc to mention it and order tests. Other docs just want to blame anxiety!!! (lol)

I hoping to get my pheo tests results back in a week. I'm not sure if the blood or urine test will capture it because I have not had a full "bad" day for 1.5 weeks now and only took the blood + urine test on an extremely bad morning where my BP went from 108/72 to 140/90 (caught by a nurse). My BP/HR spikes happen every other day and only persist for shorter periods (then my BP is back to normal) rather than before lasting 20-hours or longer. I may ask for another test and wait until I have a full bad day again (where I am bed-ridden).

 

[RecipeForDisaster]

Ugh, thanks, he wasn't too helpful! I wonder if that's true, I sort of doubt it. I know I don't have pheo, I was tested for it years ago when I had unexplained hyPERtension and now I can't keep my BP up at all. 

[voxel]

On 10/4/2018 at 5:10 PM, RecipeForDisaster said:

Ugh, thanks, he wasn't too helpful! I wonder if that's true, I sort of doubt it. I know I don't have pheo, I was tested for it years ago when I had unexplained hyPERtension and now I can't keep my BP up at all. 

So my tests results came back... it seems my Metanephrine, Normetanephrine, Vanillylmandelic Acid, and HIAA are all normal but Catecholamines test needs to be redone. Not sure if I should bother repeating Catecholamines as the other tests are normal.  Can you have pheochromocytoma with normal results for the first four?

I thought my doctor also ordered a blood test for Catecholamines but he did not? Or the lab was confused by the handwritten request. I have no idea what they did with the second 24 hr urine sample. I think the request completely confused the lab.

My renin levels were normal this time around.

I still have HR/BP symptoms but in shorter spurts than weeks prior (I recover in hours versus almost a full day). If I go with a dysautonomia diagnosis... what type of autonomic testing should I ask for? Thinking Mayo Clinic in Jacksonville, FL could do this? I don't have consistent POTS so the TTT would not be helpful. I think I can trigger my symptoms.

[Pistol]

I had all the mentioned tests done to rule out pheo. Even if they are normal - if your doc suspects hyperadrenergic based on YOUR SYMPTOMS then he might order a blood test for catecholamines. I had that done after the pheo work-up was negative and my catecholamines were elevated, confirming hyperadrenergic POTS ( based on both labs AND symptoms, as well as TTT). If all your tests come back normal you may be a lucky one and not have dysautonomia! - To be sure - and if you question your tests - you should ask for referral to a major autonomic dysfunction center. Once they receive your test results they will be able to tell if they feel you have dysautonomia or not. 

[voxel]

39 minutes ago, Pistol said:

I had all the mentioned tests done to rule out pheo. Even if they are normal - if your doc suspects hyperadrenergic based on YOUR SYMPTOMS then he might order a blood test for catecholamines. I had that done after the pheo work-up was negative and my catecholamines were elevated, confirming hyperadrenergic POTS ( based on both labs AND symptoms, as well as TTT). If all your tests come back normal you may be a lucky one and not have dysautonomia! - To be sure - and if you question your tests - you should ask for referral to a major autonomic dysfunction center. Once they receive your test results they will be able to tell if they feel you have dysautonomia or not. 

Can catecholamines levels be elevated without that day being an episode/flare-up? Did you only have elevated catecholamines and not elevated levels of the other hormones?

I heard of tests where they trigger the symptoms then draw blood to test for the excess of hormones. Did I not catch the hormones on a proper day?

I had an episode that Tuesday morning and had my blood drawn that afternoon but the 24hr urine sample was from two days earlier and my second 24 hr urine sample that matched the Tuesday episode didn't seem to get tested. I did not have blood tests for the above hormones for some reason - I thought both urine and blood were tested, but no.

I suspect I will redo my catecholamines test because the first did not get processed (lab report says - please redo) but if the other hormone tests are normal that would signify catecholamines should be normal too, right? The chemicals are inter-related?

If I don't have dysautonomia... what the heck do I have?

[StayAtHomeMom]

When you redo your test try to be as upright as possible. That way it would help show it. I have read about a plasma catacholmine test but when I brought it up to the endocrinologist he said my insurance won't pay for it and the numbers change by position. I told him that was the point but he dismissed me and tested my cortisol levels. My specialist redid my urine test he had me do two jugs. One for catacholmine and the other for sodium. 

[Pistol]

@voxel - when they do the catecholamines they take them after 30 min of rest and then after 30 minutes of being upright. I was not particularly symptomatic that day but they were still elevated. Yes - my renin etc were all normal, just norepinephrine and dopamine were elevated. In my case with BOTH rest and being active. 

[Potsie1990]

Hi guys, just an update 

did all the Autonomic testing and two TTT’s... and passed all with flying colors! Got positive everything. I have “mild general Autonomic impairment” with Orthostatic Hypotension and POTS! But they categorized it as the Adrenergic type? I scored a 3... but then they said it was most likely due to adrenal insufficiency (not like addisons).

Unfortunately I tried 2 different meds since, both failed with adverse reactions. 

Will be posting another question soon when I get the energy to type it.