Symptoms Of Pheochromocytoma Vs Dysautonomia

[Amber]

Just wondering if anyone knows the difference between a pheo 'episode' and a Pots one...?

I will be seeing an endochronologist soon for testing but until then I wondered if symptom-wise you can tell the difference between them. Seems to me they sound the same....palpitations, tachy, sweating, lightheaded, headaches, blood pressure fluctuations, etc.... Someimtes episodes can come on suddenly but other times its more gradual and can last all day....are pheo episodes more dramatic than that?

thanks

[Simmy]

I was actually first thought to have pheo when I had my second hospital visit after this all started for me in 2008. Only one of my three specialists there (and I use that term loosely) had any clue or desire to investigate any possibility other than anxiety. Anyway, he suggested pheo and that's what led me to DINET after searching my symptoms, which as you said are very similar to those of POTS.

As far as I know, the main difference between the two is the POSTURAL tachycardia. Does your heart rate increase more than 30bpm when you change your posture from a lying to a standing position? I don't think that happens in pheo, but I'm not sure. Have you tried a poor man's stand test?

[carinara]

what i learned about a pheo is that the clinical characteristics are the classical 3 points accuring at the same time:

tachycardia + sweating + headache.

These symptoms are not triggered by upright posture or heat or stress and so on. They come without a noticed reason and out of the blue. Sometimes they can be triggered if you put pressure onto your abdomen because thats because 90% of the pheos are located around the kidneys.

[Simmy]

Correct. I'm remembering now what I learned about it two years ago.

The pheo releases a burst of norepinephrine (or epinephrine?) at whim, which shoots throughout the body and especially at the heart, which causes the tachy, which then causes the sweating and headache, but it is not relieved by lying down.

I took two, standing norepinephrine blood tests, along with two separate 24-hour urine collections to rule out pheo.

[kayjay]

Hi- I have had 3 ( or 4)positive Pheo tests (24 hour urine) done at Johns Hopkins. I have never had a negative urine test. The Doctor I saw there was 100% sure that I had a pheo and sent me to NIH. I remember where I was standing when he told me that it could not be anything else.

NIH could not find anything and Johns Hopkins thought the tumor was just too small too see.

Fast forward 8 years... I do not have Pheo I have hyper POTS. The symptoms are too similar to tell the difference. you can have postural tachy with pheochomacytoma and you can even faint.

I was told about a patient who passed out when she urinated because the tumor was on her bladder.

With pheo you will have unexplained high blood pressure... like I do with hyper pots. I have every symptom of pheo... but I don't have it.

I think a PET scan is what convinced the Docs at NIH that I did not have a pheo. Also If your resting blood tests are negative for pheo that helps to rule it out.

Good luck... I know that this is not a good answer... but I do know that endos are the docs that have been so sure that I had pheo.

[Lenna]

My niece had pheos. In addition to palpatations and feelings of anxiety, she had sky-high blood pressure. Or at least, it was high by the time she was diagnosed. Which took years and years. She was literally dying by the time she was diagnosed. She had tumors on her adrenal glands, thyroid and parathyroid, and her entire endocrine system was removed, but she is doing great now.

[kayjay]

I also had crazy high BP... still do sometimes.. but one I would love to ask Lenna if her niece got really short of breath walking up stairs?

No matter how fit I was ...Stairs made me short of breath. I wonder if this happens if you have a pheo?

I was short of breath often because of how fast my heart was beating... but even when I felt pretty good ... stairs (and jumping jacks) were too much for me.

[lieze]

Okay I'll tell you everything I know about pheos and it some may be a repeat of what others wrote.

My endo wanted to scan me for a pheo because my serum norepinephrine was 866?

The thing that didn't make sense was my urine was negative and I do not have sky high blood pressures or nausea. I also saw that flank pain often occurs with pheos.

My family doctor said her aunt had a pheo and she would go for periods where she was fine and then she would get really sick. She said what they see in the office is a person will come in abnormally sky high blood pressures but then be fine the next day. She said normally they find pheos by accident and I can't remember what else she said about that.

I chose to follow up with my cardiologist because I found online that a high serum norepinephrine was consistent with POTS! In actuality they should have had me lie down for 30 minutes and then do the draw and they did not. It also didn't make sense that my urine was normal.

My cardiologist at Cleveland agreed. He said they scan all kinds of people there for pheos and find one about every 7 years. He said they are very uncommon. He also said the 5 day scan my endo wanted to do wasn't even the next test I should undergo if a pheo was suspected.

He agreed that I could possibly have POTS but thought that I was showing sign of improvement and was supposed to refer me to an endo there in Cleveland but I haven't heard anything yet.

They also did repeat my serum norepinephrine there that day and I have not heard what my results were. I have been told by that it sounds like I have hyperadrenergic POTS.

Well would the virus have induced that because my symptoms started right after the virus?

lieze

[Lenna]

Kayjay, I'll find out if my niece was getting winded.

I think that what lieze said was also true for my niece - she was sick sometimes and fine at other times. She would have heart palpitations, chest pains, elevated blood pressure, nausea. Every doctor who saw her said that it was in her head. She had episodes that came and went for her entire life until she was 19 years old. Then the episodes starting happening more and more frequently, until she got to a point where the blood pressure stayed dangerously high and she couldn't stop vomiting. At that point, finally, she was diagnosed and rushed to the hospital. But by that time, they couldn't get the blood pressure under control. For 3 weeks she was in the hospital dying and they couldn't perform the surgery because of the high blood pressure, then got to a point where they had to take a chance and do it anyway. And thank goodness, she did great. That was about 18 months ago and she has been fine (of course, she's on tons of hormones). By the way, she was diagnosed not just with pheos (which were HUGE) but with Multiple Endocrine Neoplasia which caused the pheos....very very rare!

So, the weird thing for us is that she had pheos and my son (her first cousin) has POTS. My niece's type of Multiple Endocrine Neoplasia is hereditary. Yet my son had the genetic test which showed that he doesn't have Multiple Endocrine Neoplasia, has had a negative CT and an MRI of his adrenal glands, had the 24-hour urine test, and there is no indication that he has pheos. He really doesn't have the symptoms she had. He has a more classic case of orthostatic tachycardia (and everything that goes along with it). But it's a weird coincidence.

[Amber]

It sounds like distinguishing the 2 conditions can be difficult (even with testing) so I guess I'd better pray for an endochronologist that really knows about Pots and how it can mimic pheos. I know for sure I have pots as my heartrate goes crazy when I stand or even sit up but my recent episodes of severe heart pounding (even in my head/face/neck) along with the sweating, headaches and breathlessness make me glad they are doing further testing to see what my catecholamines are up to. Probably just hyperadrenergic but who knows?