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Thread: Terrified of Cushing's

  1. #1
    Join Date
    Feb 2011
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    53

    Unhappy Terrified of Cushing's

    I hope this will be the last item in the carousel of health anxieties for me.

    Now that I'm fully over my blood clot fear, I started wondering about why this anxiety had suddenly started up, and I remembered reading something about Cushing's disease which is caused by too much cortisol being in your system, either by taking steroids or having a benign pituitary or adrenal tumour. I have a few symptoms: I've gained weight, not dramatically quickly but I've gained quite a bit since high school and since I went on Cipralex two years ago. A symptom is a "moon face" and I'm not sure i have that or not, but my face has changed shape a bit since I've gained weight; a "buffalo hump" at the back of the neck, and I'm not sure if I have normal fat back there or a hump. I have some fat that sticks out under the back of my neck but not between my shoulders like photos I've seen online. Finally, my periods have been really messed up since I started the meds. They were always irregular but I went two years without one between 2011 and this year! Stupidly I never told my doctor. Anxiety is also a symptom. I don't have the other symptoms - frequent illness (haven't been sick in three years and I work with kids!), weakness, fatigue, muscle wasting, confusion, acne, hirstutism other than typical annoyance of a little above the lip and below the belly button, easy bruising (I just got blood drawn today and haven't bruised at all from it), insomnia, osteoporosis, or high blood pressure or high sugar, but I'm scared those will develop!!

    I called my GP in a panic last week and he sent me for blood tests which I did today. Of course I had to read in detail about Cushing's online and it seems terrifying. It takes people years to get properly diagnosed, some having to travel across the country to specialists because it's so rare, and when people get the surgery to get the tumour removed, it seems a lot of the time it comes back and they're never really cured!! I'm so scared of this, and even when I get the blood results back if they say I don't have it, I still don't know if I'll believe them because of all of the horror stories online, which seem to be the norm! My doctors tell me they've seen people with cushings before and don't think I have it but from the forums online it seems few doctors really do know about how to diagnose it. My sister has PCOS and it's in the family so I'm praying that's all they'll find.

    Can someone please help me here?? Does anyone know anyone with Cushing's or has had this fear before? Been going crazy the past week my pdoc switched me to Cymbalta from Cipralex today and I'm a bit scared to start taking it until after I have the blood results...
    Last edited by tn13; 27-08-13 at 03:50.
    __________________
    The one thing that's sure is that there is no cure, but that doesn't mean we don't fight.

    We've been abed too long, all our weaknesses are growing strong. But the winter always ends with water on your lips, the April rain comes swinging in.



  2. #2
    Join Date
    Jul 2013
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    401

    Re: Terrified of Cushing's

    Hi,

    Not sure if this will help but doctors were convinced my sister had cushings disease, blood tests were abnormal and she had a number of symptoms such as weight gain, fatigue, back ache, depression.. however after an mri which showed a small pin head spot on her pituaritry gland they ruled out Cushings.

    She has now been diagnosed with Polycystic Ovaries...

    All I can say is she had a lot of symptoms and it wasn't cushings.. I hope that you don't think you have polycystic ovaries to! I just hope I have tried to reassure you.

    Thanks

  3. #3
    Join Date
    Feb 2011
    Posts
    53

    Re: Terrified of Cushing's

    Fedup, if all I have is PCOS I'll be happy! My sister has it and it runs in the women in my family (none of my dad's sisters were able to have children naturally). I know that's manageable and doesn't cause the destruction that Cushing's does. Hope your sister's well now

    I had the tests on Monday as I mentioned and I called my doctor today, they still don't have the results in (we couldn't use the lab that's in his practice because they weren't open late enough for the 4pm draw... stupid). I'm hoping they do tomorrow.

    I'm analysing pictures of my face for if it has become "moon-shaped"... my parents say no but I feel like it matches the pictures I see of Cushing's patients. I've definitely gained quite a lot of weight in the last 2 years. I don't eat well or exercise so I don't know if it's from that or from disease.

    I'm so afraid of dying, but I'm also afraid of living with a chronic illness like this. Every day I'm scared the bad symptoms of Cushing's are going to pop up, and one night I'll become an insomniac, or I won't be able to climb the stairs, or I'll become too fatigued to do well in school this year. All I can say is if you're afraid of Cushing's, do not read their support forums. The stats say that 80% of people are cured by surgery but the support groups online make it look like nobody is.
    __________________
    The one thing that's sure is that there is no cure, but that doesn't mean we don't fight.

    We've been abed too long, all our weaknesses are growing strong. But the winter always ends with water on your lips, the April rain comes swinging in.



  4. #4
    Join Date
    Jul 2013
    Posts
    401

    Re: Terrified of Cushing's

    Please please please avoid those forums! My sister has a lot of the symptoms more than you said and she was fine! So please don't worry!

    Im scared of dying to.. I am plagued by awful dizziness every day and im petrified im going to faint or collapse...

    I convinced myself that I had a brain tumour, MS all sorts and I don't I have to realise this.. One thing I do is that if I start to panic is think well if I went to hospital I've had all the tests done already and they can't find anything and just have to ride through it instead...

    Its horrible and I hate living with this but as I keep reading the mind is a powerful thing so you thinking you have cushings will make you feel thinks that you wouldn't normally feel! When I thought I had a brain tumour I was started almost making myself sick... not on purpose but kept thinking I have a brain tumour one of the symptoms is vomiting.. im start to feel nauseas and its mind power!!

    I hope your ok please don't panic... also is the very very rare case that you do have cushings, I highly doubt you do.. is that I spoke to a doctor friend and he said its very simple to cure and nothing to worry about!!

    Thanks

  5. #5
    Join Date
    Feb 2010
    Posts
    58

    Re: Terrified of Cushing's

    Hi, I was diagnosed with cushings syndrome about ten years ago. I went to the hospital as I had a lot of hormone problems relating to my periods. I had to do a twenty four hour urine collection, which showed the cortisol in my urine, it was off the scale. I went in to hospital twice for a week at a time to have a cushings work out. I had to have blood tests every few hours, then take a large dose of steroids and have timed blood tests. I had a ct scan and an mri which showed no adrenal tumours but a small pituirity tumour. Mine is controlled by tablets and as yet I havent had to have the operation. Most of the time I feel fine, the worst thing I suffer is anxiety, which having cushings makes it much worse with the elevated cortisol. If your bloods show anything you will be sent to see an endocrinologist, mine is the lovliest man ever. Dont worry you will be fine.

  6. #6
    Join Date
    Feb 2011
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    53

    Re: Terrified of Cushing's

    I finally heard from my doctor. Apparently all my labs are perfect. Not just cortisol and ACTH, but everything: blood sugar, triglycerides, thyroid, all of the things that would be messed up if I had Cushing's. they can't figure out what's up with my period but they think it's just stress??

    Still I'm terrified. I don't feel any relief. I can't get it out of my head that I have it and they missed it like all the stories I've read online and that I'm going to get sicker and sicker. I just want to be somebody else.
    __________________
    The one thing that's sure is that there is no cure, but that doesn't mean we don't fight.

    We've been abed too long, all our weaknesses are growing strong. But the winter always ends with water on your lips, the April rain comes swinging in.



  7. #7
    Join Date
    Feb 2011
    Posts
    53

    Re: Terrified of Cushing's

    So over the last three weeks I started back at university, and my Cushing's fears are still present. My doctor had my redo the ACTH level because it was a little high while my cortisol was on the low side of normal and we found out the lab didnt do the test properly. Did it again and it was 6 while the scale is 0-15. He's now having me do a 24-hour urine collection (doing it today... Awkward!) and sending me for an ultrasound of my abdomen and pelvis to check for PCOS and he wrote for them to check out my adrenal glands at the same time. I'm so glad that my GP is great and actually has patients with Cushing's before. He was telling me about his patient who has a pituitary adenoma and has had three surgeries and is still not cured he says he's not worried about that for me because her ACTH is 100x mine and her cortisol is off the charts. The thing that terrifies me most about this illness is all the stories online about people getting misdiagnosed and Cushing's being incredibly hard to diagnose. With my past fears, they do the test and I can take the results at face value, but I've read so much on this with people who had negative test results on everything but still had it and had to go to a specialist in California who gives MRIs and tons of tests right away.

    Now of course I'm worried that I have the rarest form of Cushing's that is caused by a cancerous tumour, usually in your lung or one of your endocrine glands. With that your levels are supposed to be insane, far more than normal Cushing's, and as my doctor said I'd have symptoms of whatever cancer. Still I'm scared. I have asthma and since the summer I get a tickly feeling in my chest some days but my parents have the same and my doctor said its just asthma and allergies.

    I read that a big Cushing's sign is having fat around your neck and collarbone and I do. I'm overweight and I don't know if what I have is normal or not. I want to tell myself everything is fine but I can't for some reason. I'm supposed to graduate from uni in the spring. I'm supposed to go to teacher's college. And I'm scared I'll die or get chronically ill before I get to do that. I get upset even being around my grandparents because I keep thinking I'm not going to make it to be their age. I'm 21 years old and I want to be worrying about school and relationships and careers like all of my friends!
    Last edited by tn13; 21-09-13 at 02:56.
    __________________
    The one thing that's sure is that there is no cure, but that doesn't mean we don't fight.

    We've been abed too long, all our weaknesses are growing strong. But the winter always ends with water on your lips, the April rain comes swinging in.



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