PHEOCHROMOCYTOMA anyone???????

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I have every symptom of it and ive almost died twice from the Hypertensive/Tachycardia crisis' pheo. causes looking for support and new ideas on how to diagnose. Im on numerous Hypertensive drugs im 26 and hopeless. Its destroying my life and I Cant find a doctor who knows wtf they are talking about i know more about Endocrinology and Cardiology than any doctor i've met since 2013.

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  • Posted

    I know you're looking for answers, but I'm actually going to ask a question.

    I spent two months in hospital last year, because I had a stroke (bleed on the brain, not a clot), whilst I was there, I went yellow/orange and became jaundiced, because i was a heavy drinker (call it alcoholic if you want) for 25 years. So they had to detox me and drain my liver/stomach for ascites (10 litres).

    Once they had stabalised my head (stroke) they went into over drive on sorting out my liver. I spent a good three weeks in an endocrinology ward. I researched the word, but I've never really understood why I was in that ward. If it was gastroenterology or hepatology I could understand.

    If you understand that word, perhaps you may be able to explain why I was put in that ward.

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    • Posted

      Thats a good question they may have put you there because there waasnt any other rooms available or there may be some time of Hormone that goes with the live im not sure about that one.

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    • Posted

      Every organ in your body produces sometime of hormone and Endocrinology deals with every hormone (Norepinephrine,Epinephrine, Cortisol, Insulin,Etc.. im not sure exactly how Hepatology can pertain to Endocrinology

       

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  • Posted

    im on 200mg Lebetalol bi-daily Doxazosin 2 mg nightly, Clonidine .03mg 24/7 transdermal patches and Cardezem 240 mg ER in the morning. My heart rate still spikes with my bp to insane levels alot seems postural. i get tachy and then my bp falls when i stand up and after im adjusted it shoots to insane levels again. I start sweating feeling really nervous but extremely hyper alert ( can hear a pin drop from a mile away,i notice everything even in tunnel vision) anger, and the onsets are spontaneous but they are definately induce by Physical and Emotional Stress. this is not panic attacks every test you can run for Pheo. ive had. 24 hr catecholamine collections, Octreotide scans with Indium-111 blood tests ( supposably clonidine and lebetalol will screw with an octreotide scan) which ive had multiple times. THe first one showed uptake in my abdomen so im thinking I have the Extra adrenal Paraganglioma form. Ive hand MRA's to check for Renal Stenosis to rule out cause of the Hypertension. I pouring sweat from my hands and feet is the first symptom before full blown cardiac events im having. no one can tell me anything. Ive been in two rollover car accidents i thought maybe something with my Brain Stem being it controls BP and HR. But i am also aware pheo. is extremely small and hard to diagnose and can take a long time to find my doctors agree but im losing time the mass amount of meds im on is beginning to no long work. im 26 and this is slowly killing me i can feel it i know it. My body just feels like something is eating away at it.

     

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  • Posted

    If you reside in the US I suggest uou go to the Mayo Clinic (located in the following states: Arizona, Minnesota, Florida). I saw an endocrinologist at the Florida location for a workup to rule out Pheochromocytoma and was pleased with the service.
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    • Posted

      Thats funny you say that I live 40 minutes from their and Ive had every work up done at the one in Florida my insurance changed and i cant get back there because of it but they are trying to say its genetic buy no one in my family has this and there is no way because of the way my body responds. Genetic hypertension has a pattern and consistancy. there is nothing consistant about mine it happens at random times through out the day these spikes in heart rate and HPB and ive dug into family history pretty far back and there hasnt been any evidence even if this is a recessive gene problem it would have showed up in somebody in the past

       

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    • Posted

      were you worked up for Cushings and Carcinoid as well and do you still have the uncontrolled HBP and HR even on a cocktail of Medications? what does your body make you feel when you have episodes and was its pheo.

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  • Posted

    I've had  symptoms similar to yours, and am on 2 pretty powerful anti-hypertensive

    meds, lisinipril and bystolic.  I've had sweating and flushing of the face when I've

    had my attacks, and I've also vomitied.  My pressure used to go up higher than it

    does now, but it still goes up, and it shouldn't with the meds I am taking.  I also had

    the tests commonly employed for detection of a "Pheo", but I recently learned that

    these tests are useless unless they're done during one of these attacks.  When I

    had the 24 hour urine collection, it was not during an attack, and the results were

    normal.  These tumors of chromafin tissue can be deadly, hence the necessity of

    locating them, which is not always easy.  I have cardiac issues so I am anxious to

    find out if I have one of these or not.  Its best to go to a majoy university hospital if

    its at all possible.

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    • Posted

      yea everyone craps there pants when they hear that you may have it and dont want nothing to do with it because of how dangerous it is and im afraid that the amount of time that is passing that this usually benign tumor is going to become malignant i know that has to be what i have ive probably seen 15 doctors who all agree but dont want to risk getting aggressive enough to really find it. they want to diagnose it chemically first which is not easy to do. and its not just on top of the adrenal glands it can be whats called an extra adrenal paraganglioma which can be in the lung, through out the bowl and even down around your feet. it can really be anywhere. the first octreotide scan i had showed uptake in my abdomen and the second one i had was inconclusive. im to the point in my life where i have no life because of it and im just like well lets open me up and freaking look lets stop with the bs and fix this. you cant lose a life if you dont have one. the constant spikes in HBP and HR is at the least doing damage to my Heart valves and kidneys.I start pouring sweat,flush,start trembling,get tunnel visioned, EXTREMELY ALERT and my heart rate increases to nearly 200 and my BP gets so high i feel like im dying everytime.
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    • Posted

      at the very beginning my Catecholamine levels were high before i started taking these anti-hypertensives and every test ive had since ive been on them has been in my opinion false. Clonodine and Lebetalol will affect a 24 hour test

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  • Posted

    Yes, I'm well aware of where they can be, I used to study medicine, but an accident

    many years ago ended those dreams.  If you know more about Endocrinology and

    Cardiology then that doesn't say much for the "specialists" you were seeing.  You

    obviously don't live in the U.S as we have many qualified physicians here who would have diagnosed this long ago.  Don't waste your time with those who aren't

    seriious about getting to the bottom of this, as time is of the essense.

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    • Posted

      I know im probably exagerating a little bit on the knowledge but yes everyday i have myself under the microscope because no one else has the time or the curiosity or BALLS TO FIND OUT WTH IS WRONG! i just went and had and EKG done today and it was abnormal its not confirmed yet so now i have to go see and ElectroPhysiologist my heart has been feeling very strange this past week and i know for a fact Tachycardia in any form over 150 all the time will destroy Valves in your Heart among other things Clots,etc..yes i live in Florida and went to mayo clinic for a long time and My cardiologist there tried passing it off for Genetic  Hypertension..im sorry but no one in my family has ever had this problem that i am aware of and what my body is doing is not normal in any case.

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