Discussions By Condition: Medical Errors

Is it really Cushings or what?

Posted In: Medical Errors 7 Replies
  • Posted By: cherie777
  • April 23, 2008
  • 07:36 PM

Hello,

I am totally bewildered at this point, and any input would be greatly appreciated. I am a 58 year-old female. At 21 I was tall, athletic, slim, big-busted and attractive. I was 5'8 and weighed 132 lbs. Than things went haywire. I began experiencing dizziness, had fainting spells, and stopped having periods. I developed a lot of body hair, and ended up with a beard that had to be shaved twice a day. I have very fair skin, and this was coarse, black hair. By Christmas I weighed 200 lbs. I went from doctor to doctor, and Cushings was suggested. I was tested, results were negative. I was diagnosed with PCOS (cystic ovaries), high blood pressure, and insulin-resistance (not diabetes), and the only treatment offered was birth control pills for the hormones in them, along with the attendant dangers of possible stroke and heart attack. I decided against them. I continued to gain weight rapidly and topped out at 266 lbs. I have the typical moon face, buffalo hump, huge belly, cartoon breasts and very skinny legs and rear. I was always hungy and thirsty. I was so ashamed at being so fat I went on a crash diet of meat, cottage cheese and water, and managed to lose 66 lbs in about 8 months. My periods started again. About a year ago I began to get really sick. I felt terrible and exhausted and weak. My periods stopped in May, I began a terrible menopause, and 3 months later I had a stroke. I was diagnosed as a diabetic, put on insulin, and had an A1C of 12.5. My doctor put me on the South Beach diet, and I now weigh 176 lbs. My last A1C was 5.6. I am having sweats, can't sleep, adrenalin attacks, etc. I can't rise from a chair without help or climb stairs due to weakness. Exercise is torture. I spend 20 hours a day in bed or on the couch. I am eating very little, just a piece of meat, a small green salad and 2-3 prunes a day. I'm not losing any more weight, and the tiniest bit of carbs makes my weight shoot up. Recently my doctor brought up Cushings again. I was given a 24 hour urine test for cortisol (Cushings) and the Cushings Foundation said a reading of 100 or more was a positive, my doctor said my cortisol was only slightly elevated. When I asked for the actual number, she said it was 246!! Can that possibly be right?? The symptoms other than the weakness have been the same for 38 years, Cushings tests were negative, how can it be Cushings now?? I don't understand. Help, please!

Cherie777

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7 Replies:

  • Hello, Blaze, Thank you for the reply, I will definately try the links and look into that.Best wishes,Cherie777
    cherie777 2 Replies Flag this Response
  • I was diagnosed w/ cushing's, so I know a little about this disease. Cortisol is not the only hormone produced by the adrenals, but it is the one checked for Cushing, since it is the major hormone of the adrenals. I requested a 24hr urine of Compound S, aldosterone and catecholamines. Cortisol was within range but the others were out of control. There are a couple of Cushing's support boards to help you. Sounds like you got some hormonal dysregulation going on. Did they check pituitary hormones? Could be some dysregulation from the pituitary. Your symptoms "weight gain, hirutism , insulin resistance, thirst, exhaustion, rise from couch" are pretty classic Cushing's - so I would really ask to be referred to a qualified endocrinologist. Sounds like your PCP has no idea what he/she is doing.
    LINENUP 122 Replies Flag this Response
  • cherieyou should have a full endocrine work up. Sounds like Cushings could be a possibility. Doesn't sound like your current Doc is going to get you a diagnosis though. You need to see an endocrinolgist who is able to diagnose cushings disease (some endos have no clue about cushings). Also make sure you get your growth hormone checked , specifically your IGF-1.try this website. The forums are a good resource. They people there are nice and very knowledgeable about cushings.http://cushings.invisionzone.com/
    alexburton 48 Replies Flag this Response
  • Hello, alexburton and linenup, thank you for the replies! And that site is wonderful! The question now is, how in the heck do I find an endo that is cushings knowledgeable? I have been to 3 endos in the past, and none of them even considered cushings. The last one I was sent to by the hospital in October of '07, and I told him all of my symptoms and they were obvious for him to see, and I asked him specifically about the possibility of cushings, but he seemed too busy to listen, and told me to just stick to the insulin, and don't worry about it. No testing at all was suggested. How do I find someone who knows about cushings and is competant to deal with it? I understand that it is probably a tumor on the pit, which requires delicate and possibly dangerous surgery, and I don't want to get someone who slept in a Holiday Inn Express last night and feels like they would like to take a stab at it on their lunch hour. I live in Indianapolis, Indiana. I have checked with the Cushings Foundation, and they don't list a single recommended doctor in this state. The adrenalin rushes are coming constantly and I am exhausted. I don't know where to turn. I talked to my doctor again, and she said she has a doctor friend who is an endo and while she has no real experience with cushings, she performed surgery on another patient of hers, and the patient really likes her. She is willing to send me to her, she's sure I'll like her, too. Help!Cherie777
    Anonymous 42789 Replies Flag this Response
  • Did you try Chicago or Columbus Ohio (we have the OSU Medical Center).
    LINENUP 122 Replies Flag this Response
  • It appears you are having a really, really rough time. When you have testing done, the tests have limitations, but there is a tendency to extrapolate what the findings mean. I would suggest getting a hair analysis performed by someone who knows how to interpret them. They give info regarding your mineral balance relating to living body systems, and then have a saliva test for your female hormones and a saliva test for your thyroid hormones. They may help you get a new perspective about your general health and your specific hormonal situation. Blood tests are a waste of money when it comes to this type of information. You have to be in a LOT OF TROUBLE before anything will be demonstrated, then it is usually very difficult to turn your health around. Good luck.
    Providence 7 Replies Flag this Response
  • Please consider finding a good certified naturopath, NAET or Oriental Medical practitioner. There are some very good neutraceuticals from Thorne Research or Biotics that can help get you back on track. Oriental Medicine would be especially helpful - find a practitioner who is NCCAOM certified in Chinese herbal medicine. I don't know if this is possible in your state - check out www.nccaom.org for state regulations on acupuncture and Oriental medicine. A good naturopath would be able to order a hair analysis. Sounds like the endo's and gp you have been going to are not helping - I cannot recommend Oriental Medicine highly enough. We actually take time with our patients and our diagnosing is completely different from allopathic medicine. So you don't need a Western diagnosis to get treated and start feeling better. Best wishesDOM
    acuann 3080 Replies Flag this Response
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