A New Conn-ee Joins

[Guest guest]

Hi everyone;

I'm a new " Conn-vert " , and I'm glad to find you. It's been lonely

out in the real world with the " norms " . This is my first post ever

so I will try to do my best. I spent several hours yesterday

reading every message on the board, all 1170+ of them. I have

learned a lot from all of you, you bless me. This whole process has

been a learning experience and I have a bull-zillion questions. I

think I will start with my story, as short as I can.

About 15 years ago, I had a bad sinus infection, and went to the

company dispensary and they gave me an Rx of ?Duadeacin?, I had a

terrible reaction and my BP went sky high, and I guess in a way it

never came down. I have basically had uncontrollable BP ever

since. I have been on dozens of meds 4 and 5 at a time with little

control or success. My Dr. would just increase the dosage and then

change the type, an endless cycle it seemed.

Three years ago I was in a whiplash auto accident, I was hit from

behind while sitting in traffic (a lady on a cel-phone). I got some

soft tissue damage. Then came the med doctors, physical therapists,

needle point injections, chiropractic care, and massage therapy. I

met a good friend of mine, the emergency room doctor, and told him

about my neck, and BP and GP woes. He got me to a new GP, his GP.

A really great guy, he soon made changes (different meds and adding

K for the first time) and I felt a little better BP wise inspite of

the neck injury. He checked me for Sleep Apnea, yepper, I got it.

I got to feeling a little better and my neck healed a little more.

The BP got controlled a bit better. Sleep must help those things.

Then about a year ago I got some lower back pain that just about

killed me, I literally couldn't get out of bed some mornings, my

boys would even have to dress me by putting my shoes and socks on

me. For 3 months, I could barely walk or stand, I had x-rays and

ultra-sounds that couldn't find anything but normal aging. Pain

meds, acupuncture, chiropractic, massage, nothing was releaving the

pain. Finally I was sent for a MRI, they went a little higher than

the x-rays and found a kidney stone the size of a dime. I had that

blasted, no back pain. BP went down and manageable for the first

time on 4 meds after that. But I still felt lousy and couldn't eat,

next discovery gallstones out last Nov. Still felt lousy. Lousy

equals:

Headaches pain killers can't touch, migraine type, getting more

frequent, 4-5 days a week; ringing in the ears, especially if I try

pain pills, have only tried OTCs; bright light sensitive; frequent

Insomnia, even on CPAP; almost nightly sweats, waking for dreams

with feeling of doom and soaking wet; muscular weakness/fatique,

extreme tiredness almost always; a lot of mental dullness,

dizziness, and different twinges or waves of feelings in head and

brain at different times; easily depressed/discouraged, no

initiative; and easily out of breath.

In Feb, I had the male 50ish tests done, a little late I'm almost

52, but I was busy with stones. I had a colon exam and one polup

removed. My GP wanted me to take a blood test, he was suspecting a

Pheo. So I agreed, and after the colon exam I went off Lisinopril

for 10 days and gave a blood sample. My daily meds are HCTZ- 25

mgs; Labetalol 100 mgs one morning and night; Lisinopril 40 mgs; and

K-chloride 20 meq once a day. My BP went steadily up to 225/135 the

day before the test; I felt " really " lousy. It took me about two

weeks to get back to just feeling lousy.

Test results were: K - 3.3 mmol/L about normal for me when taking

K supplements;

Cortisol - 10 ug/dL - normal- Good News no Pheo

Serum Aldosterone - 29.3 ng/dL or 808 pmol/l - high normal for

upright - I was supine

Renin Activity - 0.2 ngmLhr - lowest normal for normal salt diet -

supine

Calculated Aldosterone/Renin Activity Ratio - 146.5

Test conducted by ARUP Labortaories, Salt Lake City, UT

Aldosterone reference intervals for age 16 and older:

Upright.......................4.0 - 31.0 ng/dL

Supine..............less than 1.6 - 16.0 ng/dL

Unspecified.........less than 1.6 - 31.0 ng/dL

Renin Activity reference interval: Adult, normal sodium diet

Supine..................................0.2 - 1.6 ng/mL/hr

Upright.................................0.5 - 4.0 ng/mL/hr

An Aldosterone/Renin Activity Ratio of greater than 25 is suggestive

of hyperaldosteronism

A ratio of greater than 50 is virtually diagnostic of

hyperaldosteronism with 90-100% sensivity and specificity. ARUP

Question: I did not go off all my meds or K, would this invalidate

my results? (K raises Renin)

I found a study, " Screening for primary aldosteronism without

discontinuing hypertensive medications: plasma aldosterone-renin

ratio. " Gallay BJ, Ahamd S, Xu L, Toivola B, son RC. Division

of Nephrology of California , Sacramento, CA

Bascially states that if ARR is >100, " Data suggest that the ARR is

a valid screening assay for PA and discontinuation of

antihypertensive meds is not needed for this test. "

Had C. T. Scan of Abdomen and Pelvis with contrast

125 cc of Omnipaque-300

Results: Unremarkable C. T. of the abdomen and pelvis with no

Adrenal Mass being Evident.

My Doctor ordered " thin slice Adrenal area only " we didn't get

that. He called the Radiologist, he indicated that " thin slice "

would not find anything more than what was conducted.

Question: Is the radiologist right? (I've heard stories where they

haven't read CTs correctly in our locale)

Question: I have read studies on the reliability of CT Scans, it's

about 50-50 on finding anything less than 7-8mm. How big does the

adenoma need to be to cause the problem? How do you find the small

ones?

I started the Spironolactone one month ago, 25 mgs, morning and

night, in 3-4 days my BP dropped from 160-170/100-90 to 120-115/70-

50. After two weeks we dropped the HCTZ, BP has risen to 140-135/85-

95. All " lousy " symptoms have improved. Today we were going to

raise the Spiro to 50 mgs twice a day, but I wanted to try the

Inspra instead. I get that tomorrow at 25 mgs once a day. The side

effects of Spiro scare me a litttle, I figure if I'm just starting

out I might as well be on the new stuff. I'd like to keep my boyish

figure and what little sex life I have left.....intact.

My doctor (he's been great and would have made a great detective)

and I are kind of at a loss of where to go from here, we are both

researching. We haven't yet found a specialist in my area, Salt

Lake is close, 170 miles, I live in Pocatello, Idaho. If anyone can

recommend someone, please do.

Question: Without a specialist, Do I need to repeat the CT,

Aldo/Renin Test with salt loading, or do the 24 hour urine test,

Captopril test, screen for GRA or ACTH testing? (I would hate to go

off meds, especially Spiro/Inspra, again for these tests) The

radioactive Iodine I-131 Iodocholesterol (NP-59) scintigraphic

imaging test, Serum 18-hydroxycorticosterone test, and adrenal

venous sampling are not available in my area. What's a next good

step?

I am trying to get into a NIH study with Dr. Constantine Stratakis.

My doctor has written him to see if I am eligible and we are

waiting. Your Dr. Grim is such an asset to this forum. I believe I

have seen his name on a couple of studies with Dr. Stratakis. I

have read a lot in the past several weeks and have seen CE Grim

mentioned next to some very big pioneers in this field, names like

MH Weinberger, JW Hollifield, JH Pratt, JD Blumenfeld, just to name

a few, and of course the original Conn himself. I have already

learned a lot from these researchers and will learn more, I am very

grateful for them, I owe them.

I am sorry for such a long first post, I still have more questions,

I thank you all in advance for your help and hope I can make a

contribution to this group. I have learned so much, so fast, " I am

confused to a much higher level " . Not bad for a " slow learner and

faster forgetter " like me.

Blessings, Randy