Questions for Group

[Guest guest]

Having only gotten a confirmed diagnosis of PA on Tuesday, I'm trying

to educate myself about this condition. Dr. Grim, this group and

google have been an immense help and I've learned a lot in less than a

week but I have a few questions I'd like to ask of others who have PA.

1. For the past few days I've been experiencing some intermittent

orthostatic hypotension. Yesterday afternoon at work I became very

dizzy and lightheaded, had to sit down quickly and felt almost

immediately better. I grabbed a co-worker and had her check my BP,

which was 116/68. Wow, that's great, I thought, and certainly should

not be causing me symptoms. But upon standing I immediately felt

light-headed and dizzy again. I had her retake BP standing and it was

74/48. She retook it - 82/52. Maybe I had this all along and it only

became a problem as my BP is becoming better controlled on the

increased spiro, I don't recall anyone ever checking standing and

sitting BP's when I was so high. I haven't been dizzy at all so far

today, BP this AM 134/74 sitting, 120/68 standing. Has anyone else

experienced this problem?

2. I know many of you were misdiagnosed by Endos. Mine originally

felt sure I had PA but then became unsure of the diagnosis because

some of my labs didn't " fit the picture " . He messed around for almost

a year trying to make me fit into what he thought was the classic PA

profile. I now realize that if he'd known about the stages of PA or

read Dr. Grim's paper he should have given me a firm diagnosis on

first visit. My dilemma - do I keep going to him, give him a copy of

Dr. Grim's paper and hope that he educates himself about PA or try to

find someone else who hopefully knows more about it? He seems like a

nice enough guy and he did say PA on my first visit but later changed

his mind due to some lab results. Or do I need to follow with an Endo

at all now that I have a diagnosis? Can my attending monitor labs & BP?

3. Not a question but an observation. For years I had a problem with

nocturia and had to get up 2-3 times a night. I've been on Detrol LA

for several years with no real change. I knew that in the past couple

of months I've been sleeping through the night just fine and realized

after I read Dr. Grim's paper that this started just about the time I

first saw the Dr. at U of M who told me, " you need a lot more spiro "

and doubled my dose. I haven't taken the Detrol for 4 days now and am

still sleeping through the night. Gee, I never had " overactive

bladder " at all.

4. I've been thinking about some really inappropriate and silly

comments that were made to me over the years by various Drs. I bet

some of you heard similar ones.

-By a GP: " You're just too fat. Loose some of that weight and your

BP will be fine " . I have a scale and a mirror and know that I need to

loose weight, but what about the fact that my BP was high before I

gained the weight?

-By a cardiologist: " Why are you taking aldactone? It has minimal

effect on BP, you know " . Well, not on my BP it doesn't.

-By an Endo who has just about convinced himself that I don't have PA

but can't justify my unprovoked hypokalemia when I'm off spiro:

" You're not anorexic or bulimic, are you? " I'm sorry but I laughed.

Being that I'm 5'3 " and weighed almost 200# at the time I thought it

was one of the funniest things I'd ever heard.

Thanks to everyone here for their help and any comments on the above.

a