Years of mistreatment ... 46 decades of know hypertension & low K

[Guest guest]

In a message dated 4/9/2006 6:58:50 P.M. Eastern Daylight Time, dave@... writes:

But if it has been that low, a quick test for the effect of spironolactone on BP would be instructive.

I learned about Spironolactone from this group!!! last year. So thanks :-).

So would plasma aldosterone, renin and ACTH, plus 24 hr urine on the same.

1992: I was hospitalized because the doctor was so frustrated over my BP. I was in ICU for ten days and then transferred to another ward. Finally I was given a full body CT. A HUGE ovarian tumor was found. (Med's: By the way they had me on Cardizem, Capoten, hctz, Catapres, Ventolin, Vanceril, nitro paste to name a few. [Note: no mention of my Kdur??]). Doctors stood at the foot of my bed arguing about why my one normal kidney had never enlarged and whether I had true renal agenesis or a right kidney that was bean. I recall my doctor saying each morning he found my problem, like diabetes, or whatever; only to have it the diagnosis disappear in hours. What was happening, was the duplicate colon would work if not obstructed. This doctor knew I was obstructed but not why.

2000: I was in the hospital for about seven days. For three days I was on IV prednisone. When my full beard grew in, I was tested for androgens. I was given DHEA, Testosterone free & bound blood tests. My DHEA was low (95 when the range was 140 - 1010). Note: They had me on three day IV prednisone at the time). With the male hormones abnormally low nothing else was done. The Endocrinologist recommended Spironolactone in the midst of my medical records that I got months later. My doctor, that hospital, the endocrinologist said nothing to me. It years later I saw this record.

2000: I recall follow up with my own Hypertension/Kidney doctor in 2000. He first suspected I had a Pheo, then Neurofibroma (due to my one large cafe au lait spot). Hr said I had reactive Nephroptosis. I remember again that doctor and Endocrinologist arguing that my labs was so low. I have a diagnose of Cushing's and Hirsutism. Basically, they had no clue.

I have the 1992 (Aldos., Renin, etc. were high and low levels for the 25 days), 2000 (seven days -- levels were low). No follow up was ever done. They would see my hirsutism and conclude Cushing disease. This was NEVER with testing, just by looking at me.

Back then, no one knew I had an unusual anorectal malformation/cloaca or IMHO Congenital pouch colon. Perhaps LOCAH considering all my masculine traits and PCOS.

My aldosterone, renin if borderline high would later be low. When this doctor (1992) found my ovarian cyst he thought he found the problem. That was not the case. He and two other doctors operated on me. They did so much surgery my insurance refused to pay. An appendectomy and repair of adhesions and excoriations in the large and small intestines. If I am EDS IV it would explain all that.

My recent doctors over the years also had no clue. Now that they know I have autonomic dysfunction, solitary kidney and complicated GI duplication ... they still have no clue. One doctor however, did agree to FINALLY try the Spironolactone. She is on of two doctor that will listen to me, to hear my lecture and actually take notes. The whole medical group said two years ago that I know more about my body then any one, especially considering the Ethers-Danlos Syndrome (EDS). All of my medical folk are waiting for me to get to Genetics.

Finally, in case I did not mention it. I have moderate FMD of the Carotids. Something else my doctors are downplaying. This is since July 2004. I know this again only when I FINALLY got my medical records eighth months (March 2005). Other: I have insensitivity to pain, even with confirmed GI ruptures. I have three surgeons who confirmed I have accelerated healing. EDS folk are suppose to heal slow. I should have ruptures not multiple excoriations. I should have chronic pain, not vague pain.

This patient might have PA or one of its variants.

[Guest guest]

In a message dated 4/10/06 5:18:10 PM, CDillardda@... writes:

Finally, in case I did not mention it. I have moderate FMD of the Carotids. Something else my doctors are downplaying. This is since July 2004. I know this again only when I FINALLY got my medical records eighth months (March 2005).  Other: I have insensitivity to pain, even with confirmed GI ruptures. I have three surgeons who confirmed I have accelerated healing. EDS folk are suppose to heal slow. I should have ruptures not multiple excoriations. I should have chronic pain, not vague pain.

I would be more worried about FMD of the renal arteries with HTN and low K if aldo/renin test is not high.

May your pressure be low!

CE Grim, BS(Chem/Math), MS(Biochem), MD.

Board Certified in Internal Medicine, Geriatrics and Hypertension

Former Epidemiologic Intelligence Services Officer (Lt. Comdr.), CDC

Specializing in Difficult to Manage High Blood Pressure

Clinical Professor of Medicine, Medical College of Wisconsin