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Rare Disease | Pheo and Addisons?

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Old 02-27-2012, 11:00 PM   #1
Join Date: Feb 2012
Location: Plymouth
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Wink Rare Disease | Pheo and Addisons?

have suffered for years with extreme fluctuation in blood pressure and hospitalized numerous times/14 days each. It has gone as high as 250/100 and as low as 57/40. I've been tested for Pheo (urine test) but only slightly elevated. However, I've done extensive research and that is not 100% proven test especially when the nurses don't do it correctly (keeping on ice)

I've had numerous scans done; the one location outside the hospital has shown a small "benign" tumor on my left adrenal gland on 5 occasions. In the hospital, they NEVER see anything??? I had a kidney stone almost 2 years ago and they SAW the "benign" tumor in my left adrenal gland.

My blood work, when I had what they believe (still not confirmed) Addison's crisis was off the wall. This happens every time I have an episode. For example, LOW: my DHEA is <15, Cortisol 1.0, Potassium, 3.4, D-Dimer .22, Creatine .54, Bilirubin .3, ALT 13, Creatine .54, ACTH 5, Protein 5.6, Calcium 8.1, Albumin 2.7, A/G Ratio 1.0, GFL 47, Aldosterone 2.1, Total protein 5.5; HIGH Glucose around 200 and Chloride 111.

When I had my last bad episode over a year ago, they put me on steroids. I gained 50 lbs (normally 135/5' 6") within two months! I had steroid rage and other health issues. I decided to slowly take myself off the steroids which I know I'm at great risk. I currently moved back to Boston and don't have a specialist.

If anyone can give me some answers and/or direction on what to do or recommend a specialist for these two complicated, hard to diagnose rare diseases I would greatly appreciate it! I'm at my wits end and afraid that at 47 that I'm going to have a stroke from my pressure going to high or Addisons crisis. Thank you in advance. Michelle

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Old 09-13-2012, 09:33 AM   #2
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Re: Rare Disease | Pheo and Addisons?

Hi there. Hopefully you can find a specialist! It is hard moving and then having to start from scratch. Be very careful coming off of the prednisone. I think that is how I got some of my issues was coming off of prednisone too fast. I understand what you mean about the side effects - I hate the stuff also. I just noticed this post was a long time ago. I hope you were able to sort things out!

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Old 10-26-2012, 02:52 PM   #3
Join Date: Oct 2012
Location: NJ
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Re: Rare Disease | Pheo and Addisons?

The specialist you need to see would be an endocrinologist. They will send you home with a jug to do a 24 hour urine collection. You are right that the nurses are not doing the test correctly. The jug must be kept refridgerated or emerged in ice at all times. Make sure if a doctor is doing a CT scan of the abdomen that you drink all of the contrast. I'm not sure if IV contrast works for this type of test. I had to drink the contrast. When they did a CT of my stomach I had a soft ball sized tumor on each adrenal gland. I complained for years of not feeling good. They didn't take it too serious until my blood pressure spiked to 244/145 and by then I was in the hospital suffering from a heart attack. Please take this seriously. Fluctuation of blood pressure is very unhealthy, as is the tumor on your adrenal gland. Until that tumor is removed you will have very high blood pressure. I had a diagnosis of a rare genetic disorder called MEN 2A or sipple's syndrome. Ask for a genetic test to be on the safe side, also have your thyroid checked. I ended up having thyroid cancer. I had to have both adrenals and thyroid removed. If you don't have the genetic disorder you won't have to have the glands removed, only the tumor. I also urge that if you have to be put under sedation for any reason, make sure to tell the doctor about the tumor. It is very very unsafe to be put under with pheochromocytomas. If your blood pressure spikes during anesthesia the outcome can be very bad. Before they would even do the surgery on my adrenal glands I had to be put on beta and alpha blockers 3 weeks before hand. My blood pressure had to be normal. I'm not really sure on the steroid thing, because I only had to take steroids to replace the adrenaline in my body. It doesn't make sense that you would have to take them, because pheos will cause your body to produce too much adrenaline. You will notice this if you have anxiety, or are agitated often. I hope this helps a little.

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addisons disease, blood pressure readings, pheochromocytoma

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