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Guest Ella

Cushing's from Side Effects?

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Guest Ella

So I have always assumed the symptoms I have were from other diseases diagnosed by doctors as they came and the rest I could figure out without them saying it (bruising and tiredness caused by low iron levels, headaches caused by Chiari, random pains and numbness caused by Syringomyelia, weight gain caused by diet, problems loosing weight caused by bad diet and lifestyle, swollen limbs from heart problems, severe camps and menstrual problems caused by weight and diet, etc.). I've had every doctor in the world tell me that all my problems were because I was fat and needed to loose weight.

 

So I did. I went from 263lbs to 204lbs in about 8 months by eating just under 600 calories a day and burning off 1,200 to 1,800 calories per week. After I couldn't loose anymore, I dropped it down to 300 calories per day with no luck (I have OCD; measuring out every food item and counting calories all day comes naturally to me). But I still had the hump and I still had the tiredness; my periods did not become more regular, though. Instead of being confusing and being heavy or light and long or short and late or early, I was just starting to miss some, and I assumed it was from a lack of estrogen due to increased fiber intake due to the 26 to 28 grams per day I was getting from the fruits and vegetables (I never assumed nutrition problems since I ate a balanced diet and took multivitamins daily). All I wanted was for the hump and tiredness to go away. I didn't even care that I was fat. They said, of course, I needed to loose more, and since I couldn't, I just accepted it.

 

It's been about a year since then, and I've gained most of it back and the tiredness is getting worse. I'm so tired I can barely drive a car. And my mother needs me so she can get chemo and radiation therapy. I'm so afraid that I'm going to space out and crash the car into a tree, so I've been taking those energy sheets. They were the only thing that helped me last year in college to stay awake during classes, but now I can take a whole package and still be tired enough to sleep if I sit somewhere too long. My life is reduced to taking her to and from treatments, then coming home and laying on a couch all day because I'm too tired to do anything or go anywhere. I buy pre-packaged foods I only need to microwave to feed my brothers since my mother is too ill to cook, and I am too tired to put much effort into it. I only thought of googling about the hump because I've been searching over and over again as to what could cause such extreme fatigue on 9+ hours of sleep, and I thought they might have been related, since it's the only other problem I couldn't figure out.

 

But I don't think it is Cushing's, since I've had all these problems since I was a child and I'm still alive (every story I've read suggests a person dies within the first few years without treatment). My mother decided to tell me that although my brother has the same hump as I do (which I thought was just a birth defect; my father has it, too), I got it after taking predisone as a child for asthma. I can't remember if she told me I took it for a few months or two years, since I was on so many asthma medications as a child, since I could not breathe on my own outside of the house. But it gave me the moon face, hump, weight gain, severe stretch marks that were hideous for so many years that she took me to a doctor against my will and the doctor said it was just from fast weight gain (it's been over a decade since then; most of them are healed into white or light pink scars, so I'm not as self-conscious over them anymore). Anyways, none of the symptoms ever went away. And I still heal so terribly slow that when I had brain sugery in 2004, I'd never think that the scar would still be huge and red and bulging in 2012. Luckily, it's not as bad as it once was, so I'm glad about that, but I still hold my hair down whenever a wind picks up to stop everyone around me from being disgusted. And I remember falling down on the ice outside onto my knee when my dog ran into me, and it created a bruise that took over a year to heal and stop swelling. This was all back when I had more enegery, years ago.

 

I've never broken a bone, only fractured one when I fell down the stairs a while back. My family has very high bone densities, so none of us have ever worried about breaking a bone. I've measured my waist, hips, and chest, and I should be an hourglass shape just by the numbers, yet the vast majority of my weight is hanging off of my stomach (though my arms are certainly not thin to begin with; I always assumed this was because I had run out of places to hold weight in my thighs and hips and shoulders so it all went down to my stomach). I've stopped keeping track of my periods since I'm lactose intolerant and have enough estrogen from the soy milk and tofu products that, unfotunately, I will never miss them. Even in grade school, when I got it, I missed a week of school every month and took as much medicine as I could find at home to ease the pain.

 

Since then, I've been having pogressive problems with digestion with no idea what to call it (though I know if I went to a doctor, they'd just claim it is IBS or some other catch-all title they don't treat), pain in random organs/muscles/bones I don't even bother to get checked out anymore ("you need to loose some weight"), GERD, Syringomyelia, Chiari, and other things I'm just too tired to remember. I took the prednisone when I was about 8. I'm 20 now, and I honestly hope it's Cushings or some other disease that can be treated, since if it is the side effect of a medication that can never go away, I honestly can't go on living like this.

 

And I'm asking here because I figure you guys would know more about the disease and what causes it, or if it is just side effects, since I don't want to bother hearing the "you need to loose weight" speech again unless there's a chance all of this could be fixed.

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A lot of your symptoms are consistent with cushing's and some of them are not or in fact contraindicate it. Rather than cushing's you could have Thyroid or other endocrine that could be causing many of your current symptoms.

 

Have you ever seen an endocrinologist? Have you ever had blood tests run that measure your hormones and metabolic chemicals? That would be a good place to start.

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Hi Ella-

Please consider joining the site. You will find information on Cushing's as well as many other endocrine problems. One thing I would like to correct is "every story I've read suggests a person dies within the first few years without treatment". This is not true. In fact many people, particularly those with cyclical cushing's suffer for many, many years before getting diagnosed.

There are endocrine diseases the exist in families. Look around the site for more information.

What did you have brain surgery for?

Be well,

Pat

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Hi Ella and welcome! You are in a good place for support, information and understanding. Your symptoms sound very suspicious for cushings. A person can live quite a long time with cyclical cushings---many members come here suspecting they've had the disease for decades before getting proper treatment.

 

I'm so sorry you are suffering so much while having to deal with your mom's cancer. That's a heavy burden for anybody. Do you have insurance? Can you see an endocronologist? Or you could even ask your pcp to run some 24 hour urinary free cortisols with 17-hydroxycorticosteroids. (This is helpful if you are cyclical).

 

Some midnight saliva tests as well as midnight cortisol serums are also very helpful. When you are cyclical, your cortisol is highest when it should be lowest and lowest when it should be highest. This is called loss or lack of diurnal rythym.

 

I wish you all the best! Please keep us posted.

 

love,

melly

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