Introducing myself, new to site

[Guest guest]

Hi, I'm . Just found this site recently, and am hoping it

becomes helpful in this maze of trying to figure the craziness out!

So, after years of unexplained extremely high bp despite my BMI being

great, exercise, and medications for bp and other strange symptoms for

at least 5 years (maybe 10), I was recently diagnosed as having primary

hyperaldosteronism by a local Endocrinologist.

I am 33 years old and have had bouts of very low potassium (around 2.0

to 4.3 fluctuating frequently) that has landed me in the ER at least 3

times in the past year and a half and which delayed a necessary surgery

twice (until they could get my levels stable enough for surgery).

Despite how many times my potassium was low/has been low, my primary

care doc, GYN who had to delay the surgery twice, and ER docs merely

treated me by doing iv and/or oral potassium then re-testing a week or

so later, adding potassium pills as needed, and changing bp meds around.

I had extreme HELLP syndrome with both pregnancies, and delivered both

of my children at 29 weeks gestation (11 weeks early). Some antibody

testing my OB did (and sent to labs in California) after my 10 yr old

daughter's early birth showed I had a blood clotting disorder

MTHFR/thrombophylia, but that really has never been " hashed out " they

just tried putting me on heparin shots daily my 2nd pregnancy (which got

me not one day further along, delivered son--now 7-- at 29 weeks!).

I have read the NIH report regarding hyperaldo and know for sure that

the lab that did some of my initial bloodwork did NOT follow the

" preparation for ARR " measurement guidelines...not sure if that could

have skewed my results? I also was not up and walking around/sitting up

for 2 hours prior to the lab work.

I had the saline suppression test (and while there it took them 4 hours

to get my potassium high enough to perform the 4 hour test, so was there

all day long). I was not lying down prior to the test while they were

trying to get my potassium up and I got up twice during it having to

urinate (yet they did not measure urine output which I have read should

have been done?)? My results from the saline supression test led my

Endocrinologist to order a CT scan. Endocrinologist informed me the CT

scan was " normal " as far as my adrenal glands but showed cysts in both

kidneys and kidney stones. She diagnosed hyperaldo based on the saline

suppression test I guess. Have been on Spiro for about a week now along

with 2 bp meds.

Still having severe near constant muscle pain and spasms, with no real

relief. Also left side pain frequently and still the edema in left

calf/foot. Endocrinologist seems to think that her role is done and that

I just need to take the Spiro and have labs re-checked in 6-8 weeks.

One symptom that does not fit any of this is that I experienced sudden

severe edema of my left lower leg and foot out of nowhere about a month

and a half ago. I had some numbness and tingling prior to noticing the

swelling, and ended up being sent to the ER (could not fit on ANY

shoes...even flip flops). The ER held me for 8 hours and essentially

ordered labs, gave me oral potassium, and did nothing---sent me home

like that--with the same severity of the edema and no explanation

whatsoever for it. Went to my primary care the next day and she referred

me to Endocrinologist. Both my primary care and the Endocrinlogist have

" noted " the severe edema all on my left lower leg and foot yet NO ONE

has done anything about it or suggested anything---as if I should just

go around not fitting shoes on indefinitely while ummm...trying to raise

two active kids! I can fit flip flops on occasionally. Wondering if the

edema could have something to do with the kidney cysts (only one cyst

was of measurable size on the CT but, it was on my left kidney...I'm

thinking left kidney, left calf and foot edema...connection??)? Has

anyone else had sudden onset edema in relation to primary aldo?? It

doesn't seem to fit.

I don't have a lot of confidence in my Endocrinologist, though I've only

seen her 3 times. She is very hard to understand and I have to have her

assistant write everything down (the Endocrinologist is from India and

was trained there and I seriously can barely decipher a word she says).

The fact that she has not mentioned doing AVS at all or determining the

exact source of the high aldosterone (she says the CT doesn't show that

the adrenal glands are the issue!)...

Feedback? Similar experiences? Anyone else who had severe HELLP syndrome

in pregnancy resulting in early deliveries (wondering if there is a

connection to prematurity!)? Suggestions for anything else I need to be

asking this Endocrinologist or if I should simply just be taking the

Spiro and that's it??

Thanks,

Louisville KY

(Born and raised in Missouri--Go Tigers!).