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Sheryl, Adrenal Patient

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I was diagnosed with Cushings Syndrome of the adrenal glands in September, 1973. I underwent a bi-lateral adrenalectomy in January, 1974. 30 years ago.

I’m sure some things have changed since then; I was in the hospital for 3 weeks post-op. I had all of the symptoms listed on this site. I originally was in the ER for what turned out to be a kidney stone. While there the doctors noticed a few oddities. For me the symptoms had been coming along so gradual that no one really noticed. The kidney stone was one result of Cushings. From the ER I was sent for many tests. MRI was not available then, and a test was done by threading a catheter into the groin area artery and shooting dye into it in order for the doc. to see the tumor(s). I tried to find it interesting and it was except every time they pushed more dye into me it was painful and eventually passed out.

By that time I had entered the hospital knowing surgery would happen and that was the final test to make sure exactly where the tumors were. The surgeon told me afterwards that each adrenal had a huge tumor-benign-fortunately-each one the size of a grapefruit. The surgical incisions were made in my back, one on each side of the spine, in a sort of half moon shape. They are quite large because the tumors were so large. The replacement therapies required are hydro-cortisone and florinef. Because everyone is different you may have a different dose than I do. It took quite some time for my body to really become adjusted to the replacements. At least 5 years for me. I would hope for you newcomers that medical progress has considerably lessened that time!

I did have to be hospitalized on 3 or 4 occasions afterwards just because my body was still adjusting and because this is a rare disease not too many docs understand it. At any rate here I am 30 years later and this is the first time I have ever been able to really talk to anyone like me.

I kept asking my docs if there was anyone I could talk to, but they were not aware of any. I am 51 years old now, and feel so very uplifted that I can finally share with others my experiences of ups and down. I am married to the most wonderful man in the world, who is very supportive in every way. We have 2 children, our daughter is 21 and our son is 19. Our son is also a special needs person, having been born with cerebral palsy. He uses a wheelchair and is mentally delayed. PLEASE NOTE: His birth defect was not in any form or fashion caused by my having had Cushings. Do not be afraid to become pregnant and give birth. Unless medical information has changed for this area-we were told by many specialists and OB’s etc. that CP did not result from the Cushings.

I have been going through perimenopause and menopause since I was 38. (I was 21 when I had my surgery.) It has been difficult finding a doc who believed what I was telling him. I have been on various hormone medications for the menopause. At present I am taking Prempro for it. In all, the medications I am on include 30 mg. of hydro-cortisone, 1mg of Florinef and 30 mg. of Prozac. I know Prozac has been bad for some women, but for me it was a life saver. I had severe mood swings more than just once a month.

I would like to correspond with anyone who would like to know what may lie ahead after surgery, and also anyone who might be in the “older surgery” area. Just knowing that this site exists is heart warming! Hope to hear from you all soon. Love you all-Sheryl


Listen to Sheryl’s Interview here.

 

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Mary H (Marietta), Adrenal Bio

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In 1976, I was (finally) diagnosed with Cushing’s disease and after the up the nose surgery, which was ineffective, I had bilateral adrenalectomy.

It all started in late 1974, when I started having lots of illnesses and was depressed.  I was crying a lot and going back and forth to my doctor, who treated every illness and gave me anti-depressants.

Then the weight gain started, ( I was 185 at my highest, which was usually 115-120) actually I had been gaining weight, but by now it was rapid and uneven– only my trunk and face.

All through late ’74 and 1975, I was back and forth, even with a dx of pregnant,  (which made evryone happy, as I was married Feb 1974.  But the mental problems continued, I was under psychiatric care and had 2-3 in-patinet stays of about 2 weeks.  Each time, after the observation and evaluation, I was discharged with no dx. I would also fall asleep at the strangest places and times, all very suddenly.
In March of of 1976, I  had what was then called a “nervous breakdown,” so again I was hospitalized.  THAT probably saved my life, as it was my psychiatrist who finally dx Cushing’s and decided on treatment. He later told me that I had him very confused, as each time he thought he had the DSM dx (he knew I was in the mh field), I would change and thus, he could not fit me in any DSM DX.   Then, because of my appearence (moon face, foot-ball player shape, with skinny limbs, losing my hair and all the secondary dx (high blood pressure, insulin diabetes that could not be controlled– up, down, up down, losing hair, on my head but growing on my face and back), he said he remembered something from medical school.

He did a lot of research, ordered a lot of tests and VOILA– I had Cuhing’s disease.  It was very rare and at that time, he said there were no more 300-400 (known) cases in medical history; also, I was the youngest dx at 26, because most cases were in those age at least 50.

I had the nose surgery, very new at the time,  but it didn’t “work,” so I had to have my adrenal grand removed– they were 5x the normal size and producing 25x the normal amount of steroids. I had the surgery in Novemver 1976, which took from 7 am to 5 pm (I have the 2 long scars on my back).  I did not know at the time that there was an 85% chance of surviving that surgery.

Post surgery, all but 3 of my fingernails fell off, my hair was in tight curls (previoulsy straight) and I had cystic acne on my face, neck and back. I started taking cortisone and florinef and was told I had to take  it the rest of my like.  I was under close dr care for about a year, and by April 1977, the weight was gone (I was back to 115) and all secondary symptoms were gone.  I believe that the surgery was a real “cure” for my Cushing’s disease and after, it was/is maybe somewhat like diabetes, in that it is managed and controlled.  There are some things that I have to watch carefully, like a comprommised immune system (increase the prednisone if infection seems likely) and some depression (never hospitalized again).  I have had some adrenal crises, that landed me in the ER, maybe 5-6 over the years (how strange, no doctor ever told me or gave me a prescription for an injection for such occurences).
In 1990-1991, I had what ended up being appendicitis.  After 4x in the ER, I vomited blood and collapsed.  It turned out to be a (dead) grangrenous appendix, which should have been removed the first t ime.  Supposedly, the prednisone that I take “masked” the symptoms and since my blood showed no infection, I was sent home from the ER each time.  I spent 2 weeks in the hospital with 3 strong intravenous antibiotics to remove all the toxins in my body that almost killed me.

In 2000, I was dx with diabetes, which runs in my family, and at  64 years  old, the problems I have now are severe allergies/sinus problems (no one believes that I am sick when this makes me sick) and I seem to always be hotter or much colder than anybody (which the doctor warned me about right after the major surgery).

Also, I started out with cortisone; in 1990, a new doctor in NYC gave me hydrocortisone and I gained 10-20 lbs.  Another doctor quickly put me back on cortisone and said that the hydrocortisone was only for injections when I have adrenal crisis– it is quick actiing.  The cortisone was 25 mg daily and around 1993-94, I started gaining weight.  A new docotr in Chicago, switched it to prednisone 5mg., the equivalent of the 25 mg cortisone.  He said the prednisone did not cause weight gain– he was right.  I also take Florinef, now Fludrocortisone (the generic, Florinef is VERY expensive, as is the generic, but less).  I started out with this at .1 mg  once every other day and sometime in the 90s, the same dr who put me on prednisone, changed the Fl to one x daily.

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