Discussions By Condition: I cannot get a diagnosis.

I think I have Cushing's - anyone help!!!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • February 2, 2007
  • 07:28 PM

I am 36 year old female. Ten years ago I had problems for three years with severe fatigue, facial paralysis, weakness, and the list goes on. I slowly started getting better after a few years but never got the energy back. Five years ago I broke out with a severe rash, diagnosed with eczema, and I was given a cortisone shot. This helped but the rash became really bad again and three months later got another shot. This shot did not help my rash but I noticed about a week later I started getting tons of hair on my face. It grew after two weeks to about ½ inch or more long and was all the way up to my cheekbones. I got rid of the hair with creams but have been having problems with it ever since. I also some time soon after that starting gaining weight, all upper body and almost all of it in my stomach. I have continued to put on weight over the past five years and I cannot lose a pound. Although I have only put on 15 or 20 pounds to me it feels like a 100. No diet or exercise will take it off. I finally got so bent out of shape about my stomach, I could pass for eight months pregnant, that I had liposuction. It has been about a year now and my stomach looks like I am five months pregnant already. I have dieted the whole time and put the weight back on. My face is enormous but my legs are small. This past nine months I have been diagnosed with severe hypertension, high cholesterol, insulin resistance, polycystic ovary syndrome, osteoarthritis. I also had a mini stroke (they think and was in hospital last year) and have still been having some visual disturbances. I still have the eczema and I also have ocular hypertension and they almost started me on glaucoma drops. My heart races all the time and I have a small hump on the back of my neck. They did check my cortisol levels and they came back fine. It was the dexamethasone suppression test. I took just one pill and the test the next day. Does anyone know how accurate this test is. Should I have the urine test. I have had MRI of brain in hospital which was fine. I also have to see a vascular specialist for circulatory problems and I have a bone density test which showed some bone loss but not significant. I am 36 and falling apart and I am tired all of the time and have muscle weakness, fatigue, headaches, fatigue!!!!!! I feel like I am on an adrenaline rush all day, I wake up like this and it does seem to get better at night but now I am only sleeping about four hours a night five nights a week. The doctor doesn't think I look cushionoid but I have felt horrible for years and it is taking its toll! Any feedback from anyone would help especially if there is anyone who has or had Cushings. I know it is rare but I do in my heart think i have it. I have been sick for so many years and no answers and this cortisol test was my last hope and they just called me about an hour ago and said it was fine. I am crushed!!

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7 Replies:

  • I am really not sure but maybe you should try a gynecologist and have them check for cervical cancer or have a gastro intestinal specialist look in to the possibility of intestinal cancer. I am no expert but from the little I have heard I know cancer can hide in the lower abdomen. If it is cervical cancer you want to find out ASAP, I have lost a few family members to that and I know it can be painful. If there is pressure on the spine I think that could cause paralysis or numbness. I hope you find an answer. Good Luck
    Anonymous 42,789 Replies
    • February 2, 2007
    • 11:41 PM
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  • I am so sorry for you, there is not a lot I know about cushing's yet, what I know is that a brain mri is not enough, did they ever look at the adrenals? I am just learning about cushing's, to help a friend who is in the testing phase also. But I do have a good url for you with all the info you need and also there is a board to ask questions. http://www.cushings-help.com/ dont give up, you do have symptoms. btw, having facial hair can also be due to high dheas (adrenal hyperplasia), high testosterone, etc. hope this helps, that you will find more answers at the website. Greets and good luck in the search for answers.
    hopibon 3 Replies
    • February 2, 2007
    • 11:42 PM
    • 0
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  • Read Natural Hormone Balance by Uzzi Reiss...Most every (if not all) symptom you have is hormonal. Make an appt at an anti-aging clinic (they are expert at hormones) for help...you can find a list of these through lef.com - keep in mind that there is not a disease name for every hormonal imbalance (your body makes over 100 hormones). Traditional doctors know very little about them.
    Anonymous 42,789 Replies
    • February 3, 2007
    • 09:28 PM
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  • Dear Raynee, I just finished a complaint I have in the state of fla. against a doctor that failed to diagnose my son with cancer till he was stage 4. In the research I learned that Brad had been put on Nasacort and Flovent. Both are in the steroid family, they are corticosteroids. When using steroids together they can cause Cushings and they can lower the white cell count in the body which is your immune system. If you are on steroid, corticosteroids or any other medicine in this family the National Library of Medicine and the National Institute of Health and the Federal Drug Adminstration recommends a blood test that measures your white cell count and also you need a urinalysys for renal function. Have you ever been prescribed Bactrim? That medicine also lowers your immune system and you need white cell counts done. I would highly suggest that you find an MD that is also a member of ACCam which are doctors that have furthered their education to include alternative medicine and they find out why your body is doing what it is doing. Not just throwing prescriptions at you.Linda Brad's Mom bradkimball.com
    bradacura 13 Replies
    • February 4, 2007
    • 07:45 AM
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  • Please get a good Lyme test done. Undx'd Lyme causes all that your saying and more. It also affects the thyroid and adreanls over time. All the steriods are making things worse by supressing your weak immune system....Lupus, Ms, CFS, And Cushings have been tied to Lyme. Hope you find out and feel better soon.
    Anonymous 42,789 Replies
    • February 5, 2007
    • 00:05 PM
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  • Don't give up. I had strange symptoms that began several years ago. All of them were subltle and nondistinguishing. A few times my hairdresser would ask if something was wrong as my hair was falling out in large quantities-thought they were just trying to sell a product. In August of 2008, the area around my chin started to turn grayish in color-this discoloration gradually moved up my face. I began to lose large amounts of hair on my head, and gained facial hair. I would bruise easily, and the bruises would not go away. Like you, I had terrible insomnia was aggitated and simply could not sit still. I began to develop itchy/watery eyes and developed a moon face (not distinguishable if you did not know me). I went to an endocrinologist at the recommendation of my family practice doc. This quack told me what I had was "normal aging" and that I should merely get used to it. He told me that I had found a disease on the internet and was gearing my symptoms accordingly. I had looked up symptoms and cushings was indicated. He also told me that because I still had a menses I could not have Cushings disease. Thankfully I am a nurse and knew better than to listen to such an idiot. After that I saw 2 more endocrinologists who simply could not figure out what was wrong with me. By this time my blood pressure was 193/110 on medication, I was sleeping about 3 hours on double sleeping pills and felt like I was truly losing my mind. I had also lost all but complete hand grip. Urine cortisol was very high but the decadron challenge was unremarkable, MRI was inconclusive, CT inconclusive. Thankfully at this point I was referred to the endocrinology department at University Hospital in Denver. They were so awesome!!! Although they questioned Cushings because of my lack of features, they ran more blood tests (decadron challenge) and finally did a petrosinus sampling that finally determine the cause. A pituitary tumor. I had sugery a week later (June 2009) and have been gradually feeling better every day. One thing I will tell you about is the joint pain after surgery. They put you on prednisone to help your body recover but since your body is used to running on really high levels of steriods you have terrible joint pain for a long time (mine was over a year). However, my weight has returned to normal, b/p is under control, no more moon face or hump back and I can relax at will. Please keep persisting, there really is a reason you don't feel well-don't let anyone just brush you off.
    Anonymous 42,789 Replies
    • December 10, 2010
    • 02:38 AM
    • 0
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  • Just want to pass this information on to you. You might have a condition called Hypocalcemia. Some of the symptoms are: •Low blood calcium •Tetany •Painful muscle spasm of hands •Painful muscle spasm of feet eck•Facial muscle spasms •Facial grimacing •Paresthesias •Lip paresthesias •Tongue paresthesias •Finger paresthesias •Foot paresthesias •Muscle aches One such misdiagnosis is celiac disease. Check further on wrongdiagnosis.com and also research on other websites. I'm going through a similar situation where I cannot be properly diagnosis with symptoms I am having. I truly understand the frustrations. YOu might have a vitamin D dificiency. Check with your doctor and see what they say. Good luck to you.
    Anonymous 42,789 Replies
    • December 12, 2010
    • 02:49 AM
    • 0
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