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Pheo


tilly
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Hi again .. Second post today ? I am having one problem after the other ... I always wonder if the 24 hr urine test was enough to completely let me off the hook for the pheo ! .... since having pots and ist .. I do have all of the main problems .. Tachy gastro heartburn stomach symptoms and everything else the list is endless ... but I developed the flank pain and if I get any anxiety my heart rate will zoom to 170/90 in a nanno second .... they say renal colic and It could well be ... but then this is another health problem I have to add to the rest ... The tachy started first and then this flank pain a year later ? I tried telling my doctor of my fears but they say the urine test was negative ?.

What I am asking is do any of you still worry it could be the pheo ...

tilly

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Hi again .. Second post today ? I am having one problem after the other ... I always wonder if the 24 hr urine test was enough to completely let me off the hook for the pheo ! .... since having pots and ist .. I do have all of the main problems .. Tachy gastro heartburn stomach symptoms and everything else the list is endless ... but I developed the flank pain and if I get any anxiety my heart rate will zoom to 170/90 in a nanno second .... they say renal colic and It could well be ... but then this is another health problem I have to add to the rest ... The tachy started first and then this flank pain a year later ? I tried telling my doctor of my fears but they say the urine test was negative ?.

What I am asking is do any of you still worry it could be the pheo ...

tilly

Hi tilly,

I know how frustrating it is having dr.s look for a pheo in a 24 hr urine. I have had been tested about 5 times and one of the times then endo called on the day my daughter was in labor at a home brith, I was with her and he was sure I had one. I told them I was sure the lab had done the test wrong as the did not put the chemicals in. So I was retested and I didn't have a second bottle to pee in as I filled the first bottle by 8 pm in the evening. I have been so frustrated with the results. I always test very high. But I have been scaned from head to toe and they can't find anything so I trust that nothing is there.

Also are you laying down when you get the the tachy gastro heartburn? Is is right after eating? If so don't lie down after eating and sit up. If I lay down I will get the same thing. My doc just switched my meds nexium to the morning instead of a split does and it makes a big difference. They also gave me a list of foods for a heartburn diet. I have have reflux and never felt it or heartburn till this year, it was showing up on tests. I never knew there were foods to stay away from. I'm sure you can google this list.

The flank pain I would get a second opinion on as maybe you have something else going on. Ask your doc about a second opinion about the pain to see someone about it. When in doubt, check it out!

I hope this helps you tilly...

xxx's

Bellamia~

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Hi Tilly,

I've also been tested numerous times, including urine and blood plus a CAT scan of my adrenals. Still, I have my doubts. My numbers were on the high side of normal and they say that pheos can lurk anywhere. Maybe it's just wishful thinking on my part and it would be a great way to end this all. Especially with the extreme ups and downs with the b/p the tachyness, stomach problems and I also have the flank pain.

I've been told that the plasma metanephrines are usually as accurate as can be. I have seen two endos and both try to assure me no pheo. However, Dr. Goodkin (local POTS dr) says there is something called a pseudopheocromcytoma. Need to research that one.

Take care. I feel your frustration.

Rene

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I have a 1 cm adenoma on my right adrenal, and I DO still take a possibility of a pheo seriously! I have been on a pheo forum for about 4 years, and I have learned that alot of pheo people take years to get diagnosed. It is literally not something that pops up overnight. So, I theorize on that forum that if they are positive when the tumor is around 3-4 cm., then when they were 1 or 2 cm. they were NOT positive yet, but having symptoms that impacted their lives. That's what makes me think if I'm negative now, just keep tested every so often to make sure I'm not turning positive. It would be a great answer to all my POTS stuff if I knew it was something that could be surgically removed and cure it all!

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I just wanted to chime in and say that I have had at least 3 positive 24hr urine tests for Pheo- was even sent to NIH for a PET scan... and I don't have one. I "just" have hyper pots.

You can have positive urine test and not have this tumor. The blood tests are more accurate. Johns Hopkins was so sure I had a Pheo that they sent me to NIH for a week.

I know it is a tricky diagnosis, but for most people POTS is much more likely. If your plasma test are not positive pheochromocytoma can be ruled out.

If you see an endo. they will be much quicker to diagnose you with a pheo. This past spring when I was in the hospital the endo. doc was convinced that I had a pheo ( I don't). I also have flank pain ( in the adrenal area). I spent 6 years waiting for this tumor to show itself...

I am not sure if your tilt table test would be positive with Pheo... I have heard of people having High Blood Pressure while urinating because of the location of the tumor. Good luck

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