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Hyperadrenergic Pots Or Pheochromocytoma?


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hey guys

i have been battling severe illness almost my entire life. i have received so many misdiagnosis i cant count them. anyway, i was finally diagnosed with chronic intestinal pseudo obstruction at the age of 22 ( i am 25 now). i have had many surgeries so far (have no colon any more, with an end ileostomy and bladder catheter), and there are more to come.

in the last three years i have been developing mutiple other issues including neurological, vascular and endocrine issues, POTS etc.

i believe i may have a mitochondrial disease due to multiorganic involvement and elevated lactate and acidosis among other things.

recently, i had a sternotomy to remove a very enlarged thymus. part of my neurological symptoms is believed to be autoimmune mediated due to a tumor, so called paraneoplastic syndrome. the other part of my neurological issues as well as my CIPO with urinary involvement do not seem to be autoimmune mediated and rather fits well a mitochondrial defect. i have been repeatedly tested for MG but everything is negative and i dont fit the clinical picture as well.

here is my question fou you wise guys. there are some signs that may point to a neuroendocrine tumor which might be resonsible for the autoimmune neuropathy and some of the endocrinological problems. i have an elevated tumor marker (NSE), and my cortisol is high. recently the catecholamines were tested and my norepinephrine level was more than twice than normal (2.2 fold increase).

i am awaiting resultts on the plasma metanephrine/normetanephrine and i hope that they show pheochromocytoma as in this case there would be chances for improvement of some of my debilitating symptoms .

i know that there are several people with hyperadrenergic pots in this forum who also had high norepinephrine values. the blood was drwan in the sitting position, i was neither lying nor standing. but the the reference value for this lab is for sitting as well.

my dopamine was at the high end of normal, epinephrine normal.

now thats the question of chicken and egg (dont know how you say it in english - I am german btw) ...since pheo cause a state of sympathetic overacitivity with symptoms like pots etc it is really hard to tell.

has anyone had the metabolites normetanephrine and metanpehrine in the plasma testes and if so, where they elevated?

what do you think in my case? as far as pots symptoms go: i have tachycardia with standing up, climbing stairs, etc. i do not know what my blood pressure is. normally, when I am lyiing it is really low but i think it rises with standing up. otherwse , i dont check my blood pressure, its only done whem I am in the hopsital (which is many times a year).

but i have also irregularly occuring attacks of intense chest pressure, with palpitationsm shortness of breath, sometimes associated iwth right arm heaviness. during such an attack an EKG showed prolonged QT interval. Otherwise my heart looks perfectly normal, and the EKG is fine inbetween the attacks.

I also have severe problems with extreme vasospasms where the veisn just shut down. this has probably caused another rare condition called erythromelalgia.

i know that norepinephrine causes vasoconstriction so i wonder if thats a possible cause for these issues.

during the tilt table test everything was ok and i felt normal. however, when i was asked to stand up and keep staying for several minutes my heart rate significantly icnreased and I think the EKG became slightly abnormal as well. however,i dont know if the blood pressure increased...

so i would love to get some input from the experts....

thanks so much for reading

Sarah

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I am by far NOT an expert! And I'm so sorry to hear about all your woes. I have had all the pheo testing, carcinoid syndrome and other neuroendocrine tumor disorders. My lab values were normal, but I'm pretty positive I have plain ole pots. I'm glad your doctors are investigating possible scenarios causing your symptoms, I hope they uncover something abnormal ( in the best way possible, so you can get better)

If your interested here are my values:

Plasma metanephrine <25

Metanephrine total urine 178

Metanephrine urine 83

Normetanephrine plasma 39

Normetanephrine urine 95

Plasma renin 1.32

24hr urine catacholamines 33

24hr urine dopamine 307

24hr urine epi 9

24hr urine norepinephrine 24

Cortisol 33.2 (high)

Hope that kinda helps

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So i actually have had a lot of experience with this. i even was on a couple pheo forums for a long time. they are very nice and helpful there, but it turns out i dont have a phro but that i have hyper pots. most people with a pheo will have your levels much more elevated substantially. for the past 2years i have had elevated morepinephrine levels in blood and 24 hr urine. it was always 2-3.5x the normal but never 4x which is diagnostic of a pheo. i had ct of my adrenals and they even did a mibg scan never found anything. finally went to mayo and had the blood work done laying down and standing and they dx me with hyper pots. but u have many more problems than me so uou should definitely have it all looked at. by any chance do u have eds as well? just from ur other health issues it may be something to look at.

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