penybobeny
06-20-2007, 07:30 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?
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?
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famnd
06-21-2007, 12:14 AM
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
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, 09:24 AM
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!:)
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, 09:49 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
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, 09:59 AM
Fam,
I just read that clonidine (forgive the spelling) is used to check for this condition...
Bsheba
I just read that clonidine (forgive the spelling) is used to check for this condition...
Bsheba
penybobeny
06-21-2007, 10:07 AM
Bsheba,
Thank you very much for the response and I totally agree with you that we all come here looking for answers, support and understanding.
I would have never stumbled across Pheo on my own... the very length of the word would have been enough to have me pass it by in search of the simple and quick fix in searches. (Heck, just learning to pronounce the blasted thing put me off at first... lol... it is "fee-oh-chrome-oh-sy-toe-mah"... helps to know what to call the enemy when you find it :D )
I also agree that listing symptoms is a very good way of sparking connections for others, and if nothing else someone might have a tried and true family remedy to make some of them less bothersome... like the ringing in the ears... it drives me nuts and is at the same tonal quality as most alarm clocks meaning I don't hear them... so a friend got me one that crows like a rooster and another suggested looking into specialized headsets that people get to travel with that produce white noise. (The kind used on planes to drown out engine noise)... so when I have to get up in the morning I set the rooster clock and when I can just sleep I wear the headphones... a major blessing!
Thank you very much for the response and I totally agree with you that we all come here looking for answers, support and understanding.
I would have never stumbled across Pheo on my own... the very length of the word would have been enough to have me pass it by in search of the simple and quick fix in searches. (Heck, just learning to pronounce the blasted thing put me off at first... lol... it is "fee-oh-chrome-oh-sy-toe-mah"... helps to know what to call the enemy when you find it :D )
I also agree that listing symptoms is a very good way of sparking connections for others, and if nothing else someone might have a tried and true family remedy to make some of them less bothersome... like the ringing in the ears... it drives me nuts and is at the same tonal quality as most alarm clocks meaning I don't hear them... so a friend got me one that crows like a rooster and another suggested looking into specialized headsets that people get to travel with that produce white noise. (The kind used on planes to drown out engine noise)... so when I have to get up in the morning I set the rooster clock and when I can just sleep I wear the headphones... a major blessing!
famnd
06-22-2007, 03:47 AM
Peny,
Just have a minute but I wanted to tell you about an excellent b/p book that has some info about Pheo. It's called The Hypertension Sourcebook by Mary Mcgowan, MD. This is the best book on HBP that I have found & I have about every book sold in recent years. It is probably available as a used copy by now (2001). Since it is a rare disease, I'm not sure that much has changed since 2001. Anyhow after I come back from my trip I'll the tips she has about Pheo. Fam
Just have a minute but I wanted to tell you about an excellent b/p book that has some info about Pheo. It's called The Hypertension Sourcebook by Mary Mcgowan, MD. This is the best book on HBP that I have found & I have about every book sold in recent years. It is probably available as a used copy by now (2001). Since it is a rare disease, I'm not sure that much has changed since 2001. Anyhow after I come back from my trip I'll the tips she has about Pheo. Fam
flowergirl2day
06-25-2007, 10:00 PM
Hi, :)
This book is still available from a supplier that sells books at closeout prices. This is where I got mine months ago. It now sells for 4.99 and they have many in stock. I have nine books on high blood pressure that I've read and reread many times. They are excellent. I agree with Fam that this is a good book definitely worth seeking out.
Flowergirl
This book is still available from a supplier that sells books at closeout prices. This is where I got mine months ago. It now sells for 4.99 and they have many in stock. I have nine books on high blood pressure that I've read and reread many times. They are excellent. I agree with Fam that this is a good book definitely worth seeking out.
Flowergirl