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Pat H's Story

I may be one of your oldest living "oddities." I call it that because every diagnosis I have ever had has been changed by every new doctor I have seen... and I have known that my body had problems nearly all of my life.

After many years of misdiagnoses, mistreatments, etc. I had a "major" problem appear that altered the course of the last 30 years. I did not say it "cured me", but it put a new light on a possible reason for the many (over 20) problems that I was living with. I was a severe asthmatic since age 2 but never was given any medication (aerosols or otherwise) until I was 14, and then only a liquid in a bulb nebulizer. Each flare was a reversal of any improvement in my other symptoms and back to stage 0. I fell in love with my high school sweetheart and all I wanted in life was to be a mother, and for some strange reason I got pregnant super easily. Within 8 weeks of getting pregnant at 17 everything about my body changed.....actually improved. I went from a pathetic 98 pounds, to nearly 140 with my physician's blessing. I had 3 children rapidly - 20 months and 2 weeks apart. I felt wonderful almost 100 percent of the time.

Then we moved to the middle of the country where allergens of all kinds abound, and I lived within 4 miles of 2 sulphur-producing oil refineries. My breathing was deteriorating rapidly. All other problems were starting to show up. I got pregnant a 4th time 5 years after the last of the first 3. Throughout pregnancy I was miraculously nearly completely healthy again - EXCEPT I was developing toxemia, and diabetes of pregnancy.

After the birth of this child in 1968 everything started going downhill big time. I was 28 when he was born. From the age of 30 I was going from doctor to doctor and getting almost always "You are overweight. That is your problem. You need to see a psychiatrist. Your marriage is causing you to have problems......on and on." I went to one OB/GYN who "detected" something but I don't know what. I only saw him once. But he was certain that I had been on high doses of cortisone for my asthma, and I had not been. In fact I had never taken any form of steroid (unless it was in the liquid I was using in the DeVilbiss nebulizer).

He sent me to an endocrinologist who was highly recommended (in fact he is now on staff at a local university medical center ). But his first set of blood work even though showing some problems did not cause him any concern. My blood sugars were high (because I was overweight he said.) My periods were very irregular and some hormones were unusual (because I was overweight also), and my low libido was because my husband was a lousy lover (whereby he showed me his smiling wife and 5 children to indicate he pleased her). However he did caution me that my lung x-rays were some of the worst he had ever seen and was appaled that I was on no routine medication. He prescribed me Marax, and told me to lose weight and to walk. I did get and take the Marax, and I tried to lose weight (but only gained) and I walked when I could. By now I was reading everything I could get my hands on. Things weren't looking good. I decided if my lungs were as bad as the doctor had indicated I needed a pulmonary doctor first and foremost. So I made an appointment with a new pulmonologist/ internest in our area. I gave him the info from the endocrinologist and his first response was that that doctor was one of the best and he felt that he would only want to treat my lung problems. Okay with me I said. So he did x-rays, and monitored my lung functions. In the meantime I took classes in medical transcription and managed to get hired by the hospital near my home. I started out night shifting. About 3 months into the job I "went to pieces." I wonder if it was the night shifting - and 4 children and husband - combined to make the adrenal system short circuit.

The big event was when during flooding in September of 1977 I had a very, very extreme asthmat exacerbation. After turning blue at home, my husband drove me to the hospital because ambulances could not even reach our home. When I got to the ER all kinds of bood work was drawn, x-rays were taken, arterial blood gases were drawn. For all intents and purposes I was nearly dead. The second day inpatient (on oxygen, on iv meds, on steroids at doses I didn't know existed) the pulmonary doctor came in and said he had a new partner and that this man after seeing my lab findings had an idea to pursue on my problems. I presented to the hospital with virtually no potassium in my system. I was in the hospital 13 days and went home still on massive amounts of cortisone. Each time this was stopped the asthma flared. But the new doctor decided to try me on a new medication that was being introduced as a treatment and/or for identification of adrenal problems relating to potassium levels. It was Aldactone. From virtually still no potassium in my system, on a dose of 25 mg a day it began to rise. We began to increase slowly. to 75.

But the other adrenal problems were just getting worse. Diabetes was finally diagnosed after a 6-hour glucose in 1978. Diet was tried. Ha! By 1980 I was sent to one of the best endocrinologists in the area (in my opinion). Under his care I had tests of nearly every kind that any one who has had Cushing's, Addison's, Conn's, etc. has ever had. The aldactone was finally set at 100 per day. For about 10 years I had many other problems but they were come-and-go things, but always the same kind that others experience. The excessive hair growth, the weakness, the menstrual irregularities, blood clots that cause problems then spontaneously dissolve, stomach problems, muscle atrophy, still problems with libido (why my husband stayed I don't know but I am grateful), mood swings (why I didn't kill my 4 kids I don't know), arthritis, and the list goes on. I had surgeries on my nose twice, over 25 surgeries for moles, cysts, lipomas, etc, a tubal ligation where my ovaries were found to be covered with cysts.

I finally decided that if I personally didn't take care of myself, no one would. So with the help and "blessing" of that first pulmonologist I kind of "run" my care. I had a major change just 1-1/2 years ago, when a new family doctor suggested that my allergies were so bad I should try Claritin on a daily basis. It should not cause me any problems. I took it several months, and it was wonderful to be able to breathe through my nose, my eyes did not water constantly, I did not have hives, my wheezing was less. But I was back to being so tired, that I could just barely walk or even sit up for long periods. A standard blood draw showed again low potassium.......and worst of all an aldosterone level of 350!!!!! Even though not one doctor believed that it could be the Claritin I stopped it immediately. My doctor increased the ALDACTONE LEVEL TO 350 mg per day. I took about 20 mg of prednisone a day for a few weeks. It took over a year but the aldactone got down to between 110 and 120. (I'm living with that, even though the normal level should be under 30.) This last fall the allergens were so bad again that I had to give in and go back on Claritin to survive. But I decided, on my own, to take 2.5 mg of prednisone along with it. When my aldosterone level was checked 3 months later there was no change in the aldosterone level. My potassium level remains at 4.1............... that is with taking 0.8 mh of potassium daily. Almost every other major complent of a complete blood workup is good, except for fluctuating calcium and tryglyceride levels.

I have been with 2 endocrinologists (the first who retired about 15 years ago), and a second who did not see eye-to-eye with me and I stopped seeing. My care is now with a new, young family physician, who when told I had an "adrenal condition" and seeing some of the information I gave her including past blood work, etc.), and with the original lung doctor. I am most fortunate in that I have an understanding with both of them that "I am in charge."

I am on 14 medications and supplements, including inhalers and oxygen as needed, taking sliding scale insulin and baseline at about 130 units of NPH and 50 to 80 units of R in divided doses throughout the day (with almost no diabetic damage visible on x-rays). I wish I knew what was wrong with much so that my pulmonary doctor says all I have to do is say the word and he will refer me to either Barnes or Mayo. But then I wonder. I am in relatively good control (of whatever I have), would I just undo all that I have strived for by changing anything. Change would probably be the result of any new therapy.

Through the years I have had probably 8-10 x-rays, CT scans and MRIs.........all finding nothing on the adrenal gland to indicate abnormality of any sort. The first endocrinologist said he was diagnosing me with IDIOPATHIC ADRENAL HYPERPLASIA. (which my family calls the idiot-pathic thing i have).

I would love to offer some teaching facility all my records, let them test me, look at me, scan me, pick my brain, etc. But to consider any surgery .........I just am not sure I could do that. Only if at some time a truly identifiable growth or tumor of some sort was to show up, then I might consider.

I know this is long, but truly I have had my "problem" as I call it for most of my 67 years. so how could it be short. Incidentally, from a sickly, underweight preteen/teen, I went eventually to 175, where I have plateaued and have been since 1970. With the hump, and an abdomen that meets my breasts but relatively small arms and legs. The second endocrinologist did finally in a fit of temper tell me that I did NOT HAVE A METABOLISM.

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