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Pheochromocytoma - adrenal tumor

From: Sammi - 8 years 45 weeks ago

Recent blood test shows high levels of metanephrines; indicative of a pheo. Am currently waiting to have MIBG done to confirm/show location.

Was my new cardiologist that started ordering tests to find out why I've been having...palpitations for over 5 years, chest pains, out of breath from slight exertion, fast pulse, RLS-like sensations in my arms and various other problems. I have also had sporadic boughts of anxiety & high blood pressure; although normally my blood pressure is just fine. He was the 3rd cardio I visited after my primary care doctor discovered I have enlargement on the left side of my heart. The first 2 only wanted to address my cholesterol; didn't seem concerned about my enlarged heart. This cardio immediately sent me home with a Holter monitor, ordered a stress test plus a CT angio of my heart, plus various blood tests. He's the one who ordered the MIBG. He also explained that it was my sporadic high blood pressure that caused the left ventricular hypertrophy (enlarged heart - Congestive Heart Failure).

Problem I currently have to address is finding a decent endo. The one my cardio recommended I saw less than a year ago. Went to him with my list of symptoms (including high blood calcium) & asked for him to check out the possibility of hyperparathyroidism; which was the best I could find out on the internet. Blood test was normal, so all he wanted to address was my cholesterol! From my understanding, hyperparathyroidism and pheos are related, with many symptoms in common. Could indicate MEN2 syndrome. So I don't have a lot of confidence in a specialist who couldn't make that connection & order tests at that time.

Does anyone know of a decent endo in the Tampa Bay area of Florida? Willing to go to any of the local counties; Pinellas, Pasco, Hillsborough, Hernando, Citrus!

It's so frustrating that we have to almost self-diagnose ourselves by the internet to get the tests we need; and then take flack from our doctors for looking there! Then there comes the 'doctor search' to find someone who isn't just a pill-pusher. My cardio actually encouraged me to look on the internet regarding what is going on; first doctor to ever do that with me!

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1 Response

Is this good advice?

I am sorry I can not help you in Florida with a good doctor. Although, I would suggest that you first use an internal medicine doctor. I have a pheo and have had for many years. Any signs, symptomss, help I can give you, I would be happy to. I'd like to know what All your symtoms are and if your BP spikes along with everything else. I have the heart problems to and don't know why or how I am still alive. I am a 60 year old woman with no insurance. Does that tell you anything? I also have Non symtomatic Left Subclavian Steel and Retrograde flow.

I am sure your Cardioligist has you on a Beta Blocker such as Lopressor. If not, he should. That combined with Altace and Norvac 2x daily helps control it. But, if I had insurance, I could have surgery. You would think that since a Pheo is Cancer, I would get Disability and insurance. Well, I walk and talk so I guess they figure thats ok. I would like to hear more of your condition. Please email me also, or visit me on facebook. Maybe we can find a way to help you. Talk to your doctor about Lopressor. Let me know, God Bless, Dee

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