$600 of labwork not being coded correctly. Pheo testing

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In a message dated 1/9/2006 8:01:33 P.M. Eastern Standard Time, lowerbp2@... writes:

collect a urine specimen during the spike for catechlomine

To check for the above was why I went to Gutkin in the first place.

I saw him three times. First time July 19th 2005. I did the 24 hour urine test on July 21, 2005. After my second visit, he called my home to insist I go to the ER. He called again the next day, July 22nd. I was reluctant to go. For years, I can never go to an ER where I am unknown. As it happened, my BP was higher than usual due to sweating, dehydration, hypokalemia and the extreme heat. So, I was admitted to the Cardiac ICU on July 22-25. The doctors were freaked. Thinking I was having an aorta dissection rupture since I am EDS. Then they checked the abdominal aorta. They were so panicked they brought the X-ray machine to my cot.

By the way, I had my medical records with me. Meanwhile, the ER had received a seven page fax from Gutkin about me with history for 1979 to present. The ER doctor said he was refusing to use it. Too much old and unnecessary information. Because of that, he refused to look at my records. IMHO, they needed to know I normally have 200 BP EVERYDAY -- since 1993. I have had high BP for 46 years. That would have shown that I was NOT in a major hypertension crisis. Last year for example, my doctor had orders that my baseline was to not go over 225. They got my BP down, but slowly.

Back to July: By the time the ER doctor heard about one kidney and two colons and all that is me ... he, decided I was delusional.

By day three, he decided I did have a duplication. I was discharged on day four with no paperwork. When I returned to Gutkin, he was shocked that my BP was still high.

He wrote me August 3rd a certified letter saying he was dropping me professionally for refusing to take additional medication. Medicines I know I cannot tolerate. He wanted me to double Norvasc to 10MG and take Coreg. Apparantly, when he wrote me, he wrote my doctor.

Paragraph four of his letter says: "She gave a history of primary aldosteronism. The 24-hour urine steroid profile was completed, and seemed to suggest excess aldosterone secretion, but I have not yet seen results of plasma renin activity and routine screening blood chemistry from my laboratory -- It is possible she did not come in for these but I am checking on that now. Most likely she has secondary aldosteronism"

How would I say I had something I was never diagnosed with???

Note: I gave him copy of a old lab from 1993. That doctor had me in hospital for 25 days. The discharge summary does not mention my BP numbers. There is mention of me being on Kdur. That doctor wrote how my renin level were both HIGH and LOW. No one knew about the EDS or two colons back then.

Finally, after 14 days in cardiac ICU, in frustration I was given a full body catscan. There was nothing in the adrenals. But he did find ovarian tumor and chronic appendicitis and excoriations in both the large and small intestines. He and two other doctor did so much cutting on me that my medical insurance refused to pay them. Their reason, too many surgeries though one incision ... not to mention three doctors. I was told when I woke up that I had a megacolon. They stitched it smaller. I was bringing up green bile. I was a mess, my worse experience. Later at home, on sneezing, I ruptured something. Most likely the incisional hernia I have now. Afterwards that doctor, a Dr. Donaty refused to see me. He had me on over 12 - 14 medications. No one EVER said I had PA.

In 2000. To maintain my disability I went to an asthma doctor. The doctor freaked over my BP, and just like Gutkin that doctor INSISTED I go to the ER. They immediately gave me Clonidine that locked up the then unknown duplicate colon. They put me on IV med's of prednisone and gave me heparin injection that cause blood to ooze all over my thigh. EDS folk cannot tolerate that; but we did not know I had EDS back then. From the steroids I developed diabetes. Then my usual emotional liability and pressured speech started. So they put be on Buspar and maybe Wellbutrin ... which made me worse since the colons totally stopped. After all of that, FINALLY as my beard grew in ... they did testosterone testing, and then FINALLY thought of PA. The hospitals endocrinologist wrote they were going to try Spiro. They never did, and I was discharged. Nothing is on that discharge summary..

At my kidney hypertension specialist maybe also 2000. After not being able to get my BP down, I was tested for Pheochromocytoma and they were also concerned about my one huge cafe au lait spot. Later, I remember them being all upset because the tests results were abnormally LOW!!!!!! So, nothing was ever done.

Another note: This last July, was a 90-100 degree heat wave. I was sweating profusely and had lost 10 pounds. I was having hypokalemia and on water enema bowel management. To me, it might be why the test was high. IMHO, I think they should consider the effect two functioning colons would have on a body.

As for blood test for the Pheo, PA and GRA. He wrote my doctor that the results were not in yet. That was August 3rd, the doctors talked by phone. Gutkin faxed my doctors a two page letter on August 8th. I never heard anything until I went for medicine refills last week. Where I saw the letter.

The laboratory called my last month complaining about $600 of labwork not being coded correctly. They said it was not my responsibility.

Last year this doctor asked for my records on DVD :-(. I have not worked that one out yet. Since I no longer drive going around collecting old medical records is not easy. Help!Sound like a good idea. Find someone to scan them in for you and then u will have a copy that your can take with you to your Drs and get extra copies for them.

I will see this doctor Thursday. I am working on a summary of my symptoms, starting with the most important. My goal is to be able to sit with out triggering BP spikes. All the problems seem to be in this left rectum and the spot where the left anus should be.

Another issue is the bladder and/or cloaca. The catscan saw fluid and air in the as they report calls it, my "unusual outpouching". It is that trapped gas that drives me crazy. The doctor is considering enlarging the tiny opening as opposed to me have to EDS stretch.

Boy, I need a new body :-(. But, as least a possible fix is on the horizon.