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    Old 05-27-2006, 04:33 PM   #1
    candlelite2000's Avatar
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    Unhappy Cushing's Disease/Syndrome

    My daughter has Cushing's. I though something was going on about 2 years ago when she was 12, yes I said 12! I just knew it was Cushing’s.
    The insurance company kept telling me she had her exams and the doc said she was normal, except for elevated cholesterol. So, no appointment unless it was at my expense. She started blooming big time and I checked on the no period thing. They do not worry until 16 years. She was growing the normal hair patterns at that point (however, a medical report I read later mentioned she had moderate hair all over. She always was a bit hairy from the day she was born) and gaining bra sizes by the month, the doc said don't worry. Then the weight gain began and the ugly stretch marks. My beautiful daughter who was a pageant winner, model and actress was blowing up. But hey, mom is fat so the kid will be too. My doc gave this big explanation about if a whole family were triathlon participants they would all be healthy and if another were a family of unhealthy eaters they would be sickly and over weight. (Referring to my weight and numerous unexplained aches and pains that are a living hell) The doc said eat less and exercise. (I had been told this my whole life and it NEVER worked, I even had a stomach stapling, I am the diet expert queen, and I am still fat! More than 150lbs over weight)
    She dieted a very balance diet, no fad diets, and exercised daily, 6 months later she weighed 25 pounds more than when she started. They said she was lazy and she should try harder (I heard that too). So far, she has gained over 100lbs and climbing. Why wouldn’t a doctor question a child of normal weigh her whole life and suddenly she becomes a blimp? I guess it was all my fault in their eyes.
    The stretch marks look like a map of rivers carved into canyons, they go from her wrists to her ankles, and the worst are on her stomach and under her arms and breasts. Some are more than two inches wide bright red and purple and sunk in. She can brush the hair on her face, back and chest. She is covered with hair from head to foot. It is hard to tell the beginning of her hairline. Speaking of her face it is so puffed up that her eyes are just a slit, her cheeks are puffed out further than her nose, and head is misshaped because of rolls of fat on her scalp. She speaks from two fat lips and her teeth are spreading apart. The roll on her neck goes from her chest to her chin with no break. She is 14 years old! and looks like she is 50.
    She was dragging her self to school for the last 2 years, but kept A+'s coming in. She was in pain all the time. This was not the same kid! I am Mom and I know my kid! I was the one who had to keep buying her larger clothes. She and I agonized over the fact that she was getting fat and she felt she needed to be chastised, that she had no right to feel pain because she was too young. The only thing she could do was keep pushing on like all the other fat people, shop in the ugly large clothes section, and live with it. . Finally the doctor took a blood test, (not our family doctor, I had to pick this one out of the phone book), and guess what? They told me that her cortisol level was over 3000, I guess that is pretty bad. We went from no one listening too they were afraid to touch her.
    It was getting so bad those two weeks after the first blood test she started missing school from exhaustion. She never missed a day of school before this. (She couldn't she was only fat then). After several weeks the school volunteered to home school because she was looking so horrible, they were afraid the other kids would knock her down an injure her. She could not see where she was going because of blurry vision and her cheeks were too big. I have to bath her and help her stand up and walk because she is like a big ball.
    The teacher comes by two times a week. She stays home alone by because I got to work, all the better for her because she sleeps at least 16 hours a day. Anyhow several months later, after MRIs, numerous blood tests she is on high blood pressure meds, diuretics, glaucoma eye drops (Hello, she is 14!) we have a prognosis. At first, we felt bad that she would have to have part of the pituitary gland removed to reduce the cortisol level. It would have been a small tumor the size of a pinhead I am told. After which she would have had to take medications for a while to control the body functions, sweating, eating habits, heart rate, hormones etc… until the pituitary took over again. That would have been great compared to what really is about to happen. It turns out that her whole gland is enlarging and is five times the size of normal. The whole thing has to be removed. It is too big for the space and pushing on her optical nerves, threatening her sight among other things. (Hey, only 1% of time these things are cancerous. That’s the good news until they go in). When I heard what life would be like after, descriptions of mentally unstable, infertile, and medication the rest of her life to keep her alive, the list goes on, I was devastated. The latter option of removing part of the pituitary was a cakewalk.
    June 13th is the day they will be taking my baby from me. We are to arrive at the hospital at 6:00 am for surgery. I still do not know if I am doing the right thing.
    Is there anyone out there who can help us? This is a rare disease for children; our worldwide know children’s hospital couldn’t even help.
    One last thing, the doctors keep asking who diagnosed her. I tell them I did. Actually, they are not too surprised. Once you get with the doctors that handle this type of thing, and that is not your family doctor, they know what a struggle it is to get someone to listen. Don’t feel crazy if you feel that you may have this disease. I have read everything I could find. I have delve into and looked at every angle on this as possible. I did not read the first sight that came along. I researched the adrenal system, the types of surgery, the options, the symptoms, read other peoples postings, and any thing that at least one mention of anything to do with the subject. I did not just look for Cushing’s but any words that had to do with the adrenal system. What I have found out is that too many of us are walking time bombs. People have died before anyone believed them. One sight that has a group of doctors handling the info mentioned that they believe that one out five diabetic patients could be suffering from this disease. What about the ones that have osteoporosis? High blood pressure? Unexplained weight gain? Or just feel like crap? Another sight mentions that at least one fourth of the population has a small tumor on the pituitary that could be cause any number of health problems for no reason like fatigue syndrome and fibromyalgia.

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    Old 05-28-2006, 09:27 PM   #2
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    Re: Cushing's Disease/Syndrome

    I am so sorry for what you daughter has had to go through. It breaks my heart. I wanted to let you know to make sure the docs test all her pituitary hormones (including vasopressin) as well as estrogen, progesterone, DHEA-s and testosterone (these could be causing the hair growth, research Polycystic ovarian syndrome), free t3 and t4, aldosterone and renin as well as igf-1 and post these with the ranges when you get them. You want her hormones tested every which way before and after the pit surgery.

    That her teeth are spreading apart, make sure she is tested for growth hormone secreting tumor as well (igf-1 and GH tests). High GH causes excess bone growth in head, hands and feet. Acromegaly is the term for high GH. In adults doesn't cause taller stature, but your daughter is young enough that excessive GH can cause one to grow at a fast rate or even grow excessively taller like in giganticism.

    I pray your daughter will get the help she needs.

    Last edited by Hormoneman; 05-28-2006 at 09:40 PM.

    Old 05-29-2006, 07:51 PM   #3
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    Re: Cushing's Disease/Syndrome

    I'm so sorry for what your daughter is going through. That is a hard enough disease to have when you are an adult!

    She is blessed to have a mother who is fighting for her.

    I don't have any any advice but check out [url][/url], maybe you can get some info there.

    My prayers are with your daughter!

    Old 06-16-2006, 10:42 PM   #4
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    Re: Cushing's Disease/Syndrome

    I cried after reading about your daughter, I am sending you both big hugs from across the Atlantic. xxxxxx

    you are a wonderful mum to keep on fighting for your daughters health,even though the drs treated you like crap. well done you for not giving up. xx

    your daughter is a strong brave young lady, most healthy young people would not be able to cope with keeping on top of their school work let alone getting the grades your daughter acheieved whilst being so ill.

    It sounds like your daughter has inherited mums strength and courage, and i feel very sure you will both come through this.
    thinking of you

    Please keep us posted on how you are both doing

    Old 06-18-2006, 02:46 PM   #5
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    Re: Cushing's Disease/Syndrome

    Hi again,
    Thanks for the encouragement. We are home after a several day stay in the hospital. My daughter has a nose sling to catch the bloody mucus running from her nose. She is plugged up and frustrated because she can not blow her nose. She had urine dumping the first few days. There are actually dents in her skin where there was puffiness. She lost about 10 pounds. The local news paper ran an article on her.

    copy and paste the address below to read it. Do not copy the [url] or [/url]
    it will not work then.

    [url] w==&Mode=HTML&Locale=english-skin-custom[/url]

    It is really hard to get any info from the doctors. They made me feel like I was suppose to listen and not question them.
    The good news is that the doctors were able to leave behind a small rice size piece of the pituitary gland. At first, they thought it would all it had to be removed. The doctors were going to remove the whole gland at the stem in the brain. With cameras, they finally were able to see things in color, unlike the MRI scan that only shows in shadows of gray. They found the gland to be yellow and spongy, it suppose to be pinkish like other good tissue inside of our bodies. The pathologists started to take slices and biopsies of the yellow tissue. This yellow tissue was a tumor that was sending bad haywire messages to the other glands and systems in her body.
    About 2 hours after the surgery was suppose to end the surgeon came in to say that close to the stem that connects to the brain they found good tissue. It was a small piece that they did not want to biopsy just in case they would cause damage to it. It looked healthy and the team of doctors decided to leave it behind instead of doing an alcohol wash to destroy communication to the brain. The tumor had taken over the pituitary gland instead of growing separately on its own like most tumors. The Nero surgeon said that this was the worst case of Cushing's Disease he had encounter in he career. He will be retiring in 2 weeks after more than 30 years of practice. Her prognosis is not really known but leaving tissue behind means that it can send some messages and may reduce the need for higher dosages of medications.
    Right now, they are giving her the steroids and insulin shots that her body was producing to prevent her from going into shock. She is also getting antibiotics, blood pressure and diuretic meds. They removed a piece of fat from her stomach to fill the space and plugged it with a piece of bone from her nose. She has a sling bandage on her nose because there is seepage. They had to put a cotton plug deep in her nose. They entered under her lip so there will be numbness there for at least 6 months. It is only a few days now but one of the rolls of fat that formed on her neck has gone down and you can see small indentations on her chest and shoulders where her skin was stretching, tearing and bulging. Her skin is delicate and ripped with wide red stretch marks over most her body, arms and legs. We will have to work on getting those repaired, hopefully she will heal most of them on her own.
    If anyone knows how to get bad stretch marks to heal let me know about that. Thanks

    Last edited by candlelite2000; 06-18-2006 at 02:59 PM.

    Old 06-18-2006, 03:25 PM   #6
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    Re: Cushing's Disease/Syndrome

    Hi I remember reading this post on the skin boards and was curious to know how you and your daughter were doing. I'm glad you posted an up-date. I'm very happy to know that the surgery was a success and now I'm sure she on the path to a healthy and happy recovery. I read the article, your daughter is very beautiful, I hope she knows this.

    About the stretch marks, I usually would recommend exfoliating but since hers are supper thin and breakable, why don't you start to apply aloe vera ( pure) emu oil, vit E, flax seed oil and 100% pure olive oil to them everyday. Or mix the mixture with an organic mud mixture ( you can find this at any local organic store or beauty store) and give her a body mask every so many days and see how that helps. Have her start drinking alot of water too to help hydrate her skin, but that is only if she can I'm sure right now her body is going through a million changes with having surgery and trying to adjust.

    The best thing for her is to keep her spirits high, she will get past this and hopefully be the inspiration for others who have to suffer with the disease. Bless all of you.

    Old 06-20-2006, 01:28 AM   #7
    lucky charms
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    Re: Cushing's Disease/Syndrome

    Just wanted to say your story was very touching and Im so happy your baby girl is on the way to recovery..

    Old 06-22-2006, 12:27 AM   #8
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    Re: Cushing's Disease/Syndrome

    Thanks for the good words everyone
    Claudie is having some hard nights. I guess her body is messing with her. The hormones and messages the brain sends are ones affected by the day light and night. That is why 2nd and 3rd shift workers often suffer from stress. We where not made to be nocturnal.
    She has stiff upper lip, literally and for real. It will be like that for a while, but she smiles with the lower lip. But she is smiling. Her nose is still stuffed up and she can not blow. The other day she threw up and panicked because she could not breathe.
    I have not returned to work yet, that is are big hardship for us. I just could not leave her home alone.
    The doctor is on a wait and see. She has asked if she could write this up for the medical journal for the future after we have some answers. Claudie is excited to help other kids.
    I think that there are some kids that go thru childhood with this disease and they are not diagnosed until adulthood.
    For now she is enjoying watching her cats play with the ballons she got and all the pretty flowers.
    If anyone has anymore comments or ideas please make a reply
    Any questions please ask. I will be checking back.

    Old 08-02-2006, 04:15 PM   #9
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    Re: Cushing's Disease/Syndrome

    Hi. I just found this post today. I hope your beautiful daughter has healed well from her surgery. If you found some relief for her stretch marks let me know for I am struggling with the same problem. I wish her all the best.


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