Discussions By Condition: I cannot get a diagnosis.

Pheochromocytoma symptoms - Cant get a diagnosis

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • July 19, 2010
  • 08:01 AM

Over the last few months I have sparotic episodes of a heap of symptoms,

- Tachycardia
- Palpatations
- Headaches (constant to severe throbbing ones)
- Intermittant left flank pain
- Abdo pain
- Chest pain
- Shortness of breath (when symptoms at worse)
- Hypertension (which checked during 'episodes' around 160/100, usually 110/70)
- Dizziness
- Nausea

Have had all the cardiac testing - multiple 24/hr holter moniters, echos, stress tests etc - all being fine appart from random tachycardia eppisodes - up to 210bpm.

Went to the ED last weekend with severe left flank pain (dr suspected possible kidney stone - bloods and urine NAD) was given morphine & metoclopramide IV - had a quick reaction - BP spiked to 180/110, HR 170, felt sick and dizzy. Similar to when i have an episode from home.

Im finding the episodes are becoming more frequent with smaller things setting them off - such as walking up a few stairs (Im quite fit and healthy) or going to the toilet.

Have done two 24hr urine for catecholamines - first negative (no episodes), second to be confirmed tomorrow (I had a lot of episodes during this one)

Renal & Abdo Ultrasound - NAD

CT Abdo & Adrenals done this morning - NAD

Bloods mostly normal - Slightly anaemic, CRP slightly elevated

I have a past history of mild asthma (only had one bad attack last year with the pneumonia and slight exercise intolerance) and a few UTIs. Other than that I am a usually fit and healthy 19 year old (weighing about 61kg, 5ft 7 in height)

Any clues?????? I really over all these symptoms and really want some answers!

My GP is refering me to an endocrinologist this week.

THANKS :)

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9 Replies:

  • All those symptoms could indicate a autonomic nervous system (ANS) dysfunction or dysautonomia eg something like POTS (postural orthostatic tachycardia syndrome). With POTS most with it have low BP, but with some of us with it (my own case is like this)... the BP can be dysfunctional (my BP skyrockets at times even higher than yours is and just doesnt regulate right). Good list of POTS symptoms http://www.dinet.org/symptoms.htm * POTS isnt a heart problem as such thou it does cause the tachycardia (hence heart doctors dont really usually know much about this disorder) .. it is a problem with the bodies regulation system.
    taniaaust1 2267 Replies Flag this Response
  • All those symptoms could indicate a autonomic nervous system (ANS) dysfunction or dysautonomia eg something like POTS (postural orthostatic tachycardia syndrome). With POTS most with it have low BP, but with some of us with it (my own case is like this)... the BP can be dysfunctional (my BP skyrockets at times even higher than yours is and just doesnt regulate right). Good list of POTS symptoms http://www.dinet.org/symptoms.htm * POTS isnt a heart problem as such thou it does cause the tachycardia (hence heart doctors dont really usually know much about this disorder) .. it is a problem with the bodies regulation system.Thanks for that - Ill chat to my GP about that on Thursday.My BP is normal 110-120/70 most times of the day until i have an 'episode' or such - it sky rockets.Any other ideas? tests I should try and get?
    Anonymous 42789 Replies Flag this Response
  • It sure sounds like pheo symptoms, but the 24-hour urine test will confirm that.
    Anonymous 42789 Replies Flag this Response
  • Over the last few months I have sparotic episodes of a heap of symptoms, - Tachycardia- Palpatations- Headaches (constant to severe throbbing ones)- Intermittant left flank pain- Abdo pain- Chest pain- Shortness of breath (when symptoms at worse)- Hypertension (which checked during 'episodes' around 160/100, usually 110/70)- Dizziness- NauseaHave had all the cardiac testing - multiple 24/hr holter moniters, echos, stress tests etc - all being fine appart from random tachycardia eppisodes - up to 210bpm.Went to the ED last weekend with severe left flank pain (dr suspected possible kidney stone - bloods and urine NAD) was given morphine & metoclopramide IV - had a quick reaction - BP spiked to 180/110, HR 170, felt sick and dizzy. Similar to when i have an episode from home.Im finding the episodes are becoming more frequent with smaller things setting them off - such as walking up a few stairs (Im quite fit and healthy) or going to the toilet.Have done two 24hr urine for catecholamines - first negative (no episodes), second to be confirmed tomorrow (I had a lot of episodes during this one)Renal & Abdo Ultrasound - NADCT Abdo & Adrenals done this morning - NADBloods mostly normal - Slightly anaemic, CRP slightly elevated I have a past history of mild asthma (only had one bad attack last year with the pneumonia and slight exercise intolerance) and a few UTIs. Other than that I am a usually fit and healthy 19 year old (weighing about 61kg, 5ft 7 in height)Any clues?????? I really over all these symptoms and really want some answers!My GP is refering me to an endocrinologist this week.THANKS :)I'm going through the same exact thing. Your symptoms are just like mine. Initially a pheo was suspected. Now< it has been found I have CARCINOID SYNDROME. The tumors excrete seratonin, therefore your morphine given to you would only increase seratonin levels more causing your blood pressure to go up like that. I'm an RN and have been getting sicker for the last 3 years. Was told it was in my head, anxiety, blah, blah, blah! Finally, although, scarily, my tumors were located and now I have this to live with. It is cancer, but at least I have a diagnosis. Ask your doc about it. A 24 hour urine for seratonin (51HAA) is how it is first checked out. Good luck, and be persistent! Once you develop the symptoms the disease is advanced at this point.
    Anonymous 42789 Replies
    • October 25, 2010
    • 08:48 PM
    • 0
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  • It sure sounds like pheo symptoms, but the 24-hour urine test will confirm that.Done the 24hr and so far negative, although high neg on metanepherines value=92, norm(24-96ug/24hr); and normethaephrine value=365, norm states 75-375ug/24hr). Have seen cardiologist and endocrinologist? What next?
    Anonymous 42789 Replies
    • October 28, 2010
    • 00:53 AM
    • 0
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  • I'm going through the same exact thing. Your symptoms are just like mine. Initially a pheo was suspected. NowI am also an a RN, same story they suspected thyroid at first then a pheo, however the MRI revealed neg pheo. 24hr urine VMA also showed neg but a high neg on the metanephrines and normetanephrines. My endocrineologist believes it may be R/T a TCA i may be taking, any ideas/suggestions?
    Anonymous 42789 Replies
    • October 28, 2010
    • 01:00 AM
    • 0
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  • Have you looked into mitral valve prolapse?http://www.wrongdiagnosis.com/m/mitral_valve_prolapse/symptoms.htm Just a thought....
    gr8tful 175 Replies
    • November 2, 2010
    • 07:17 AM
    • 0
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  • I too have been facing the symptoms of POTS, yet I just got a phone call and they told me that I need to see an endrocrinologist asap, because my metanephridrine levels were extremely high and my cortizol level were high. can any help me
    Anonymous 42789 Replies
    • December 17, 2010
    • 06:46 PM
    • 0
    Flag this Response
  • Over the last few months I have sparotic episodes of a heap of symptoms, - Tachycardia- Palpatations- Headaches (constant to severe throbbing ones)- Intermittant left flank pain- Abdo pain- Chest pain- Shortness of breath (when symptoms at worse)- Hypertension (which checked during 'episodes' around 160/100, usually 110/70)- Dizziness- NauseaHave had all the cardiac testing - multiple 24/hr holter moniters, echos, stress tests etc - all being fine appart from random tachycardia eppisodes - up to 210bpm.Went to the ED last weekend with severe left flank pain (dr suspected possible kidney stone - bloods and urine NAD) was given morphine & metoclopramide IV - had a quick reaction - BP spiked to 180/110, HR 170, felt sick and dizzy. Similar to when i have an episode from home.Im finding the episodes are becoming more frequent with smaller things setting them off - such as walking up a few stairs (Im quite fit and healthy) or going to the toilet.Have done two 24hr urine for catecholamines - first negative (no episodes), second to be confirmed tomorrow (I had a lot of episodes during this one)Renal & Abdo Ultrasound - NADCT Abdo & Adrenals done this morning - NADBloods mostly normal - Slightly anaemic, CRP slightly elevated I have a past history of mild asthma (only had one bad attack last year with the pneumonia and slight exercise intolerance) and a few UTIs. Other than that I am a usually fit and healthy 19 year old (weighing about 61kg, 5ft 7 in height)Any clues?????? I really over all these symptoms and really want some answers!My GP is refering me to an endocrinologist this week.THANKS :) Please if you find out let me know. I am having mostly the same things. My BP shoots out of the roof when i am walking only. I will feel very light headed and have actually passed out 4 times. I only feel the symtoms when i am walking around. the highest my bp was recorded. was 210/110 = while standing. my normal is usually 130/80 They cannot give me meds.. cause my bp is normal.. it will bottom me out. The heart doctor ran lots and lots of test. he totally ruled out my heart. And my urine collections are coming up fine. " i must however say i just read not to drink coffee during the test. i did not knowthat and both times drank coffee"
    Anonymous 42789 Replies Flag this Response
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