Pheochromocytoma - High & Low Blood Pressure Message Board

penybobeny · 06-20-2007, 04:30 PM

It has been a while since I have posted on the boards, a Medical Hiatus of sorts.

I have been having BP issues, Heart Failure Issues, Thyriod Issues, you name it and one day out of the blue a DR not related to my other health issues (a Pain Management Specialist) looked at me with my 247/145 BP and asked a few questions and told me to get checked for this rare condition.

My Cardio told me I am textbook, but to catch it with the 24 hour urine you have to have a flair-up during that time, so that means taking the test when you are having the symptoms at their worst, and that cannot be predicted. My Adrenals have been CT scanned and are clear but the Doc thinks that the tumor is hiding out somewhere else.

Does anyone here have any experience with post diagnosis and outcomes that they can share?

famnd · 06-20-2007, 09:14 PM

Hi Peny,

Glad you posted again. I was checked for Pheo but my 24 hr urine speciman couldn't be relied on because I was & still am on a high dose of Lebetalol. My Dr. was afraid to take me off Lebetalol to do a proper urine collection. My highest b/p was 230/110/120. I'm really surprised that you weren't tested for Pheo before now. My adrenal scan was normal. Lebetalol is used for patients with Pheo-have you tried that drug? Fam

penybobeny · 06-21-2007, 06:24 AM

Quote:

Originally Posted by famnd

I'm really surprised that you weren't tested for Pheo before now. Fam

Hi, Fam, and thanks for the reply...

The fact of the matter is that my Primary Doc (when I went to him with the idea) said that the idea was swimming around in the background, but because it is such a rare disease, dismissed it as improbable and never mentioned it.

My Cardio has been practicing for almost 30 years but has never had a patient with pheo and his partner has only had one... when conditions are rare they often get looked over it seems and it took me asking to get the ball rolling... that and the keen mind of my Pain Management Doc who saw peices of the puzzle and asked a few questions and urged me to get checked.

Here are a list of the symptoms I get-

-Turns red (I am talking deep dark red) in the heat with a racing heart, zero heat tollerance.
-Extreme BP fluctuations daily (ranging from an average of 220/130 to 140/85 and back again over the course of the day)
-Heart Rate (my normal resting is 80-90) goes to 130-160 without warning, i.e: brushing my hair can cause nothing or uncomfortable pounding and SOB
-30 day cardio monitor shows sinus rhythm tachycardia with PVC's
-ringing in ears

In the past I had a surgical emergency... during outpatient surgery my BP went very high and when they treated it, it crashed. I was left with an enlarged heart (mostly resolved leaving mild LVH) and spent a week on a respirator in CCU... little did I know until I was told of pheo and looked it up that this is a textbook issue with pheo!

I have not yet tried Lebetalol, my Cardio is going slow with meds (I have a tollerance issues with most medications) but will ask him at my next appointment... thank you for the tip!

bethsheba · 06-21-2007, 06:49 AM

Welcome back Peny,

Because your condition is rare, you may or may not get feedback from the posters. HOWEVER, I would encourage you to keep us up to date with your condition and with your treatment. Many of us come to these boards with unresolved bp issues of some kind or other and even though your exact diagnosis may or may not apply, some other info that you share may stimulate ideas in others as to what they may or may not do to manage their condition. Also, another person who is diagnosed down the road with pheo can refer to your posts for reference and guidance.

The list of the symptoms you are experiencing is very informative! Thanks again.

Bsheba

bethsheba · 06-21-2007, 06:59 AM

Fam,

I just read that clonidine (forgive the spelling) is used to check for this condition...

Bsheba