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Pheochromocytoma


lissy
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Hey all,

I went to a geneticist a few months back and she mentioned it but I just blew it off cause I googled the symptoms and high blood pressure seemed like it needed to be a major symptom and problem. I have most of the same problems as everyone else on here but I'd like to explain these episodes I have and I just thought it was just part of POTS and it may be but let me explain and see what you all think.

I have had so called extreme panic attacks since I was 18 they would come and go they would last no more than an hour, and this is what they felt like: I felt mentally disconnect, panicky, in fear ,dilated pupils, sweaty , clammy, heart racing sitting or laying, very dizzy it happens at any time and then it disappears as quick as it started. It happened last night and I took my B/P it was 125/85 ,normally on a day to day basis its 80-90/ 60-70 heart rate was 104 laying down. It took about an hour to go away and I was my normal fatigue self after that....

So my question is do you guys have these episodes and have been ruled out for pheo?

The geneticist said to tell my GP and have the tests done when I feel my worst but its so unpredictable when its coming. I'm so tired of test like most of you and I know I'll have to badger a doctor just to order another test this is so frustrating!

Any replies are greatly appreciated

Lissy

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I was having those same types of episodes.

I don't think I have a pheo can't prove it.

My family doctor said usually with a pheo you will feel normal for periods of time and then get really sick with high high bp and nausea vomiting.

My urine catecholamines for the 24 hour period were normal.

My serum were elevated which can also happen with POTS.

I also had about 3 panic attacks the day of the testing.

It doesn't hurt to rule a pheo out and is a good idea but I was having similar symtpoms as what you describe and I really don't think I have a pheo.

My symptoms seem to be getting better or staying the same not worse.

It's not uncommon during a panic attack to have your bp and heart rate elevate during the attack.

Panic attacks suck. I wish we would both never have another again-they are so scary and what I found was I just felt almost disconnected from true reality for days waiting for the next panic attack.

I really did not feel myself during that time at all.

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I was having those same types of episodes.

I don't think I have a pheo can't prove it.

My family doctor said usually with a pheo you will feel normal for periods of time and then get really sick with high high bp and nausea vomiting.

My urine catecholamines for the 24 hour period were normal.

My serum were elevated which can also happen with POTS.

I also had about 3 panic attacks the day of the testing.

It doesn't hurt to rule a pheo out and is a good idea but I was having similar symptoms as what you describe and I really don't think I have a pheo.

My symptoms seem to be getting better or staying the same not worse.

It's not uncommon during a panic attack to have your bp and heart rate elevate during the attack.

Panic attacks suck. I wish we would both never have another again-they are so scary and what I found was I just felt almost disconnected from true reality for days waiting for the next panic attack.

I really did not feel myself during that time at all.

Thanks Lieze

I found a post by StacyRN and was curious what happened with her and did she recover and have the surgery...that was back in October. I know I will look into this further I also have axillary freckles on one of my arms which goes with neurofibromatos which can cause a pheo. I just am so unsure I definitely dont feel fine ever! I'm pretty ill most days and the attacks happen a few times a month,And nothing seems to be bringing them on...I just want an accurate answer to my health I wish we didn't have to experience this either.

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Lissy I have these spots too.

I just looked it up and it sounds like me.

I started noticing the brown spots on my ribs maybe within the last year or so.

I guess I should go to my doctor and have her check it out.

Wow Lieze keep me posted and Ill do the same maybe we can rule in or rule out some things.

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Okay well I went and checked out my spots and they aren't very visible at all and there aren't very many of them. It's like they are flaking off or something. I did not see any on my back at all.

And for the most part I feel better.

A couple things that made me not worry a lot about the spots were I had a lot of sun exposure as a teen and I'm fair skinned. I thought maybe it was just related to that and aging.

I have never really noticed anything like it before this past couple years and I had never had a panic attack that I recognized as one until maybe a year ago and I am 44. I did have horrible anxiety as a teen and may have had panic like attacks then but it was never paralyzing or a fear I would die. I could keep up with it, I was hyper.

More about the spots my dad grows weird skin things all the time and has to have them removed. They don't necessarily have pigmentation to them but they will sprout right off of his forehead. He had one for the longest time on the inside of his arm. He did have a large cyst type thing removed from his back that was growing for a long time. So I thought it was basically a skin thing.

He also acts very nervous, and OCD ish. Never panic that I know of.

But in my days of care giving and taking care of people. They do sometimes have spots. Leopard like and they live to be old people.

Also a younger woman was growing pigmented spots all over her neck and down the front of her chest and went and had them burned off at the dermatologist. She told me about it and said they told her it was nothing to worry about that it's just a genetic thing. I since have noticed other people getting these along with skin tags around there necks of people who wear necklaces a lot of the time. It's like the chain of the necklace irritates the skin and little growths occur. Weird.

Well I am in no way trying to minimize this just sharing what I related my spots too.

Also in the last couple years I developed a pretty good sized mole I guess you could say groin area but it falls below where my underwear fit on my leg. Inside leg. This could also be classified as one of these spots but it is pretty much dormant. Has not changed or done anything since I've developed it and I have not gotten any more of them.

I worried about it and wondered if I should get it removed.

I worked with a woman who developed a lot of moles in her groin area and had to undergo quite a surgery to remove all of them.

She seemed okay too and has lived to be past a middle aged woman. late 50's maybe?

And for the most part I feel better.

I am still not myself but I don't feel as if I'm getting worse at this point.

I do think we should keep in touch I would like that it would be nice.

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My mom was initially diagnosed many many years ago with panic attacks. Then, 8 ys ago, I started having seizures. After medication, I experienced "breakthrough partial seizures" that were -surprise!-exactly like my mom's "panic attacks". Because the episodes were so much like my grand mal seizures, I never thought of them as panic attacks. I would wake up in the middle of the night (and always right before my period, called "catamenial"), heart racing, feeling of nausea, heat flash then shaking. (in the grand mal episodes, I was unconscious but dh would wake up)

I encouraged my mom to see a neurologist, and she ended up on an AED (anti-epilepsy drug) and it helped her with the episodes she'd been having, too.

When I was first experiencing all these problems, my FP doc did check for a pheo, but my urine catech were LOW. He didn't know what that meant (except that it wasn't) so sent me to an endo, who eventually did an ACTH stim test and determined I was actually Addison's. Low cortisol. (which I'm now second-guessing as to whether it's primary or secondary or tertiary, but that's a whole other story)

And I'm now wondering if these episodes that you describe that I've experienced (which now are creeping into other times of my life, which really honks me off!) aren't more due to autonomic origin. So now I have a new diagnosis of dysautonomia, plus addison's, plus epilepsy.... Er, either my body is really messed up, or there's a common thread there somewhere....!

Good luck!

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A few years ago my catecholamines levels were abnormal and my endocrinologist suspected that I may have had Pheochromocytoma. I had 2 MRIs to try to detect a tumor, but both of them came back negative. Ultimately, he settled on a belief that my abnormal test was an artifact caused by a medication that I take (Parnate - and MAO Inhibitor). It was a pretty disappointing experience because nothing was ever determined to be the cause of my symptoms - until a couple weeks ago when my ttt tested positive for NMH.

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