Discussions By Condition: Medical Errors

Cushing's Disease

Posted In: Medical Errors 23 Replies
  • Posted By: laurie hahnlen
  • November 15, 2006
  • 02:45 AM

:) I am a 40 year old female. When I was in my 20's I started gaining weight and having mood swings. This got worse and worse. I went to many different Drs who mostly dismissed it as being depressed and eating too much, even though my diet had not changed. By the time I was 35 I had a list of symptoms including: weight gain of over 80 pounds mostly around the abdomen, extreme fatigue, muscle weakness, high blood pressure, purple stretch marks around my abdomen, facial hair, acne, infertility, easily bruising, round "moon" face, buffalo hump (hump on the back of the neck), thinning hair, brittle nails and thin skin. I felt and looked horrible. I was even suicidal. I am an RN and knew something was terribly wrong even though Drs thought I was crazy. I diagnosed myself with Cushing's Disease in March of 2002 and had successful surgery of a pituitary adenoma in August of 2002. I am sured I would have died without the diagnosis. Cushing's Syndrome is caused by a tumor somewhere (usually in the adrenal glands or pituitary gland) that causes excess cortisol production. The excess cortisol (a steroid) is what causes all the symptoms. When the tumor is in the pituitary gland it is called Cushing's Disease. Left untreated, Cushing's Syndrome can cause diabetes, heart disease and osteoporosis. Fortunately I did not get any of these. Initial testing for Cushing's Syndrome is usually blood tests: an am cortisol level and a pm cortisol level, and a 24 hour urine test to measure cortisol ( you save your urine for 24 hours). I urge anyone having these symptoms to be tested for Cushing's Syndrome. It is usually a treatable disease. I would not want anyone to go through the years of suffering that I went through. It is important for anyone having this syndrome to go to specialist at a major medical center. I went to the University of Michigan where I saw an endocrinologist specializing in Cushing's Syndrome and a pituitary neurosurgeon did my surgery. (My tumor was in my pituitary gland). He had done over 2,000 pituitary surgeries so I knew I was in good hands. Most of the symptoms I had went away after my surgery. I feel 100% better!

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23 Replies:

  • Hi-I am very interested in your story. I have just recently been diagnosed with hypothyroidism. I know it's not the same thing, but what is the same is, I have those same symptoms as you. I had been told that my prolacton levels were increased, so they had to do a mri. They found two "nodules" on my pituitary gland, both with and without the contrast stuff. At first they thought it was a tumor, but said it was nodules from my severely under active thyroid. Because of it being under active, the gland created those nodules to compensate, or stored up extra, I was told. Well now that seemed logical at the time. Today however, I got the most recent test results in, and my thyroid is where it should be, and so are my prolactin levels. I don't understand why I feel worse then before, I have horrible back, shoulder, neck, head, and lower back pain. My hair just started falling out by the handfuls last month, I have always had the hump on my neck, the chiropractor said it's because not having a curve in my neck. I never had bad acne when I was a teen, but now it has been showing up more and more. I don't have stretch marks on my abdomin, but I do have a good sized gut. I am not real big other places, but am now retaining water. I gained 10lbs in the last 2 weeks.So now overall total is 40lbs. I also am extremly fatigued, and have been brusing very easily, not sure abou the rest though. I know that it could just be my thyroid, and it's still erly for me to tell but it's not only the similiar symptoms it's a lot to with the fact that my aunt on my mom's side has cushing's. Is it hereditory? Is it possible to have both? Or does cushing's screw up your thyroid also? Or am I just being paranoid? Thanks if you get a chance to reply.Trina
    Anonymous 42789 Replies
    • November 15, 2006
    • 04:24 AM
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  • Trina:You have alot of symptoms of Cushing's Disease plus the nodules could very well be Cushing's. When I had it my thyroid and prolactin levels were normal. There are also tumors that produce prolactin but I don't think you would have Cushing's symptoms. I would highly recommend the tests I mentioned earlier in my first post: am cortisol level, pm cortisol level and 24 hour free cortisol urine. Are you seeing an endocrinologist? If not make an appt with one. Cushing's is so rare (1 in 100,000) that alot of Drs miss it. If you can't get in to see an endocrinologist right away, have your primary Dr order the tests. Demand it if you have to. There alot of websites that have good information about Cushing's. I will get back to you with some of them. Do you have a major medical center near you? That would probably be a good place to go if you do have it. Also is your blood pressure elevated? In the 3 months before I was diagnosed my blood pressure was 170/100 on medication and I had gained 20 pounds. Please get tested right away. Let me know what happens and if you want me to email you directly, email me and send me your email. I hope you get the correct diagnosis soon.Laurie:)
    laurie hahnlen 19 Replies
    • November 15, 2006
    • 04:04 PM
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  • Laurie- I just got done reading a website that talks about cushings. I had went there after I read your post. I had read the symptoms and I found I do have more symptoms that are the same then I thought so I think it could be a possiblity. I was wondering if you feel, r did feel, dizzy most of the time, and then have a time during the day, every day around the same time, where you get extremely dizzy for about 10 min or so, then when the dizziness subsides, get a horrible pain mostly in the back and neck and shoulders. That has been happening to me lately and I at first thought it was my pills or maybe fibromyalgia. I have asked others with thyroid problems and they have a not really experienced this. Also I work at a place where I sit for a couple mins here and there and when I try to get up, I feel like how older people feel. I am only 22. I go to be everynight in pain, it is so bad I have to take pills, so I can sleep, and that only takes the edge off. I am one who takes one tylenol and I out, except now. I am seeing a endocrinologist, for the thyroid problem, and I did tell them about the pain. So I hope to get things figured out. Thanks for all your help, I really appreciate it.Trina
    Anonymous 42789 Replies
    • November 15, 2006
    • 06:18 PM
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  • :rolleyes: Trina:I don't remember being dizzy but with Cushing's your body is so out of wack that I'm sure anything is possible. I know I did ache alot and my neck hurt alot. Let me know what happens with the test results. Good Luck.Laurie
    laurie hahnlen 19 Replies
    • November 15, 2006
    • 11:24 PM
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  • I have a pituitary tumor and I am scheduled to go in next month to be checked after a couple of years. I think cushings is an issue for me as well. I have many of the symtoms but one which is unusual now which is a pain in my left arm as if I am being injected with something. It is like a striking pain. I took d-glucarate to dump excess hormones.
    Anonymous 42789 Replies
    • November 18, 2006
    • 05:51 PM
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  • :) That is good that you are getting tested for Cushing's. The initial tests are am and pm blood cortisol levels and a 24 hour urine test for cortisol. Are you going to an endocrinologist? This would be the best Dr to go to. What part of your arm is the pain in? I had carpal tunnel syndrome and the pain was in my hand and forearm. If the pain is shooting it could be a nerve problem. What agravates it? I am not familiar with d-glucanate.Laurie
    laurie hahnlen 19 Replies
    • November 25, 2006
    • 07:00 PM
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  • Im only 15 and was diagnosed Cushing's at the age of 13. At first the tumer was on the right side of my pituitary. my leves went back to the to the leves y Dr. wanted aftear about 3 mouths and i was off my meds. i notested some of my symptoms come back when school staeted. my dad said it was in my head so did my one Dr. around Feb I when i got my blood taken for a checkup my leves were up again and i just had a 2nd surgary right befor school started this year. now im in 10th grade and still have to dell with this. IT SUCK!!
    Anonymous 42789 Replies
    • November 28, 2006
    • 01:44 PM
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  • :) Hi! I'm sorry that you have gone through so much at such a young age. How have your levels been since your surgery? Are you taking cortisone? I had to take cortisone for a year after my surgery because my pituitary stopped functioning. How are you feeling? It takes awhile to start feeling better.Here are some websites that you might want to check out for more information: csrf.net and cushings-help.com. They also have stories about people with cushing's.email me if you have any other questions.samnlinz@aol.comI hope you start feeling better.
    laurie hahnlen 19 Replies
    • November 28, 2006
    • 09:18 PM
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  • Im doing ok now. i still dont fell up to doing things that much but it doesnt help when im in colorguard and cheerleading. my levels are lower then 1 right now so ill be on meds for awhile.
    Anonymous 42789 Replies
    • November 29, 2006
    • 00:43 PM
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  • :rolleyes: Just remember it usually takes awhile for your pituitary to start functioning again. What meds are you on? I was on hydrocortisone for a year.I hope the websites I gave you help give you support. It really helped me to be in contact with other people who were going through the same thing. Hang in there and post whenever you need to.Laurie:)
    laurie hahnlen 19 Replies
    • November 29, 2006
    • 08:31 PM
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  • Yes the website you gave me did help but i only can get to a computer in school. My stepmother doesn’t let us on the Internet to talk just for homework. I’m on hydrocortisone right now, i don’t know for how long. It depends on how im doing. But thank you so much in talking to me and helping out. It not like you can go somewhere in a small town to talk the closes place i might get is Erie and that’s still about one to two hours away.
    Anonymous 42789 Replies
    • November 30, 2006
    • 02:06 PM
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  • Hi it me again. I just got good news in the mail last week I can stop taking my medaction all together. My dad just wants me to go off them slowly. Im 16 now school going ok not the best, i still dont like being here but what kid does? Im going into modeling, and then go to school for nursing, i want to work at UVA where I went though all this or go out to California where my Dr. move to and is now studying more and helping people out there. Im happy for him but going to miss him alot. Good news for alot I know and I know if I can do it this young anyone can do it!
    Anonymous 42789 Replies Flag this Response
  • Hi Laurie,I have an appointment with an endocrinologist on Tuesday. My doctor actually refused to refer me, so I had to self refer, but I think it will be worth it to know. I started having anxiety and depression about 7 years ago, and while I got on (and a year later off) meds for that and learned to live with it, I never really got rid of it. I've had a weight problem since I was 10 years old (now 29), and while I hit a weight-loss goal of losing 100 lbs right before the anxiety set in, what I had to go through to stay under 200 lbs was ridiculous: 5 hours of exercise a day and less than 1000 calories. It didn't last, and I gained over 120 lbs back in the course of the last 6 years. Understand that I don't lead a sedentary lifestyle. I have been practicing martial arts for the last 9 years and I walk 5 miles 2-5 times per week, depending on the intensity of the martial arts workout. Three years ago my mom showed me a reader's digest article on Cushings and I have been planning to set up that appointment ever since. I finally did, because now my blood pressure has skyrocketed very suddenly. 2 months ago it was 120/78, now its 210/120 and that scared me half to death. The weird thing is that I had been losing weight (40 lbs) when it went up. I'm on 3 different meds to keep that down (40 mg Benicar, 25 mg HCT, and 50 mg Toprol), but they're barely working and it fluctuates like crazy (systolic could be anywhere from 105 to 175 at any point, diastolic has been between 65 and 90). I have some dizzy spells and that thin skin feeling just set in about 2 weeks ago (concurrent with rampant acne and high blood pressure symptoms). I do have stretch marks, and they were purplish-red, but have discolored since I lost the 40 lbs over the last few months. Lately I have been having really weird symptoms: multivitamins producing euphoric effects, chest pains (on both sides, but not into my arms, ekg's seem to be fine), and a totally erratic heart rate. I've always had an irregular heartbeat (faster with inhalation, slower when I exhale), but lately, even on the meds, my resting heart rate has been anywhere between 45 and 80. Without the toprol, it got up over 100 easily. What do you think? I'm taking my doctors referral to get an MRA on my kidneys too, but he told me flat out that he didn't understand or care to hear all of my symptoms, which has been really disheartening. Does this sound like it could be adrenal or a thyroid issue? When I was at the ER for the blood pressure, they did a blood test, but I don't know what all they test for in that.Thanks
    Anonymous 42789 Replies Flag this Response
  • it's probably thyroid, rather than cushings. the toprol wouldn't have take your heartrate down like that. good luck and don't give up, L
    Anonymous 42789 Replies Flag this Response
  • Hi all,A couple years ago, I hunted up an endocrinologist/internist and went to him with all my Cushing's symptoms and signs: buffalo hump, sudden weight gain and increased chest girth, premature menopause, preceded by irregular periods from age 17 into my 30's, early osteoporosis with back pain, easy bruising, ruddy face, development of jowls on my lower face, loss of libido, reduced strength, and hair on my chin and areolas so bad that I have to shave. He refused to test me for Cushings! What an a*&%@^!Now, 4 ruptured discs later from spinal degeneration, I find out that I have an adrenal adenoma! I am considering suing him for failure to diagnose.I will be asking NIH if I can join their diagnostic clinical trial dealing with adrenal adenoma testing. I need to know for sure whether to have this adenoma removed, but I suspect it will have to be.H*****
    Anonymous 42789 Replies Flag this Response
  • You can't sue unless there's been some kind of damage done to the adrenal glands and you don't know yet if you have adrenal tumor or not. Your best bet is to get a second opinion and tell them you want to be tested for Cushings and if your not on steroids find out the underlying cause. It sounds like Cushings to me however a brain tumor could cause it. So, before you peel the bannana check all sources out get results then get the attorney. I've got Cushings but mine is from chronic use of steroids because of lack of adrenals working properly because there's no brain connection. My adrenals are fine. Hope all goes well in the mean time calm down.
    Anonymous 42789 Replies Flag this Response
  • 31 y/o male... dealing with several symptoms my entire life... I had depression, anxiety, and anger issues at a young age. All of these peaked when I went from teenager to adult. I was in bodybuilding around high school age, and remained consistent with that until age 28. I had periods of extreme weight gain, 80#s in less than a year and it wasn't from poor nutrition or lack of exercise. I went to several endocrinologists over the last few years, and ALL of them were completely useless. Last year I was hospitalized for extreme back/flank pain, and it was determined that I had a degenerated disc; however, my pain was related to whenever I would go to the bathroom. About 2 months ago, I experienced hyperglycemia and diabetic-like symptoms, and then the blood pressure went completely out of control. It started as a very mild case of hypertension, and I was on anti-anxiety and ADHD medications at the time. My eye doctor recommended I get off of these medications because of a specific eye condition I have. When I slowly got off of these medications, my blood pressure shot through the roof, almost to 180. Apparently, these medications were masking my moderate hypertension. My blood pressure dramatically rose in less than one week, so the doctor put me on Norvasc 2.5mg. A week later, the doc put me on 5mg... a week later, 10mg... you get the picture. I started losing scalp and facial hair, approximately 60 hairs per day. I ended up contracting a very very rare form of strep throat from Streptococcus B bacteria. I requested my PCT to order the 24-hr urine tests for Pheochromocytoma and Cushing's. The pheochromocytoma came back negative, except for high Creatinine levels. The cortisol levels came back high, about double the normal rate. Other symptoms I've experiences: numbness in my extremities when I raise them up or prop them on something, or when I first get out of bed. I have extreme fatigue and pain in my several of my muscles and joints. Whenever I go to the bathroom, my blood pressure shoots up and I can feel my heartbeat through my chest. This can also happen when I bend over or do various things around the house, or walk to the car. I also experience night sweats and profuse sweating with extreme thirst and frequent, almost ridiculous urination. My striations/stretch marks are consistent with cushing's and my facial and body hair continues to grow like mad. I have to shave every 24-hours. I also have problems with slow gastrointestinal movement. I am visiting a doctor specializing in Cushing's in my state, so I hope everything goes well for me tomorrow. My advice to people who are frustrated with their physicians or the difficulty of getting diagnosed... Do your research and remember one thing... YOU know YOUR body!!! If you don't feel well or if something is not right, do NOT second guess yourself! Most importantly, do NOT accept BS answers from endocrinologists or other types of doctors. Doctors nowadays do not have an open mind, and you need to push them to do these tests. If you don't like what a doctor tells you and you know they're giving you a crappy answer, go to someone else!! Your life may depend on it!
    Anonymous 42789 Replies Flag this Response
  • Just lately I was told my my doctor that my porlacton level was high. First I had to take a brain scan to see if I had a tumor. After getting the results she said that there was no tumor but she would like me to see an oncologist.Then I got on the internet, I put in prolacton levels and found this sight. I don't know what this disease is but I also have thining hair, I have had a shooting pain in my lower back, so bad it is hard to stand up after sitting, and I have bad leg pain. I also have a had time sleeping for the pain. I was taking asprian for the pain, but it was getting to the point that I was taking two many asprian. I am easily 100 pounds over weight. I am tired a lot but I work some pretty strange hours. I just read about the websites csrf.net and cushings-help.com. I am going to look into them. What couses this disease? Thank you for this place for questions, if I can find any answers to my questions it makes me feel better.
    Anonymous 42789 Replies
    • February 20, 2008
    • 02:15 AM
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  • I am totally confused at this point. I am a 58 year old female. At age 21 I was tall, slim, big busted and very attractive, then I began to balloon, and gained nearly 60 pounds in just under 6 months. I had married on July 9, my weight was 132 lbs, (I'm 5'8) and before Christmas I weighed over 200 lbs. I began to have dizzy spells and passed out frequently. I developed a lot of body hair, including a full beard that requires shaving twice a day. I stopped having periods. I was never able to get pregnant. I had the fat moon face, fat neck, buffalo hump on my back, huge belly and very thin legs and rear. (I remember my mother and grandmother having the same exact features but my sister doesn't.) I went to several doctors, gynecologists, and an endocrinologist. Cushings was suggested several times, and I was tested at least twice for it, but was told I didn't have it. I kept rapidly gaining until I reached a high weight of 266 lbs. I was insulin resistant and had high blood pressure also. I was tested for diabetes as late as 2003 and I did not have it. I was so embarrassed at being so fat, I finally had to nearly starve myself, eating nothing but meat, water, cottage cheese and diet soda for nearly 8 nonths, and got down to 200 lbs again. I ruptured several disks later and during the horrible recovery period I lost another 10 lbs. In the spring of 2007, I was slimmer than I had been in 36 years. I began to feel so terrible and weak, and stopped having periods that May, going into an abrupt and severe menopause. Within 3 months I had a stroke. I was hospitalized, diagnosed a diabetic with an A1C of 12.5, and put on insulin. The doctor suggested the South Beach diet, and I was once again starving myself. I got down to 176, and an A1C of 5.6. Now the weight loss has stopped even though I continue to eat very little. I'm talking a piece of meat and a green salad, maybe 3 prunes a day. I am so weak I spend nearly 20 hours a day in bed or on the couch. Adding carbs makes me gain several pounds rapidly. I cannot get out of a chair without pushing up with my hands, and I cannot climb stairs, my legs are very weak. My joints ache, I have terrible arthritis, and my mucsles hurt. I waddle and stagger, and cannot hold my upper body or shoulders up. I feel like there is an iron band around my chest (tested for heart problems, nothing there) and I feel like I am walking through deep sand and have to almost throw my body forward to move. (The weirdest thing is that once in a while, just for a few hours about once every other month or so, I feel almost normal, and can rise unassisted from a chair and stand up straight and walk steadily. As I get tired, it goes away, and I am back to square one.) I am foggy and have trouble concentrating. I have never been so sick and miserable in my life. My latest doctor suggested Cushings again, and did a regular blood test that came back 26.0 on cortisol (the normal range was up to 24.0). Then she did a 24 hour urine. This moring she said it was only slightly elevated and she wants to do a DEX test. I went to the Cushings Foundation website and it said a urine test that resulted in 100 or over was a definate indication of Cushings. My reading? 246!!! That doesn't even sound right! Can there be different ways of reading the results? How can I have had it for over 38 years, all the symptoms, and been tested for it, and didn't have it, and now suddenly I do? I don't know what to think or do at this point. Any help would be greatly appreciated. Cherie777online77@comcast.net
    cherie777 2 Replies Flag this Response
  • Hello Laurie, I was very interested in your post. I am a 38 year old mother, work full time and my son is autistic. About a year ago I was diagnosed with peri menopause. I had a partial hysterectomy at age 30 because of endometriosis. This past april I assumed my endo came back, I was in alot of pain in my abdomen. At the same time I noticed a fairly large lump in my throat/neck region. My family Dr. sent me for an ultra sound on my thyroid. They diagnosed me with multi-nodule goiter. I went to an ENT, he eprformed several test and a fine needle biopsy on my largest knot. It came back benign (thank goodness), but I told him of all my symtoms and he said my thyroid test showed normal and sent me for a sleep apnea test, which also came back normal. My symptoms started out gaining alot of weight, 35 pounds over thr last several months,even with eating very little and exercise. Also memory loss, very bad mood swings, depressed, extreme fatigue, muscle weakness, easy bruising, alot of edema. I was sent from work to the er a few weeks ago. Mylegs and ankles swelled so bad one leg and foot went completely numb. The tingling in my leg and foot keeps reoccuring now. I am on fluid pills but when i forget to take them my eyes also swell really bad. Several dr.s have told me there is nothing wrong and I need to watch what I eat and exercise. I feel absolutely horrible and am sick and tired of being told there is nothing wrong with me. I made an apt. with an endocrinologist and went to see him 2 days ago. He listened and is now running tests on my cortisol levels. Your post has really helped me and made me feel not so alone. Thank you and Ill let you know how the tests turn out. All I want is to feel better so I can take care of my boy.
    Anonymous 42789 Replies
    • October 16, 2009
    • 03:13 AM
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