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  • Possible Cushings Syndrome or Disease

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    Old 07-21-2012, 09:07 AM   #1
    Cat64
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    Possible Cushings Syndrome or Disease

    Is anyone here with Cushings Syndrome or Cushings Disease? I have just learned I have a tumor on my left adrenal gland. Not sure if it's hormonally active yet (well I'M SURE cuz of symptoms but I have yet to do the 24 hour urine tests!)

    I am having all sorts of symptoms which I was attributing to perimenopause! What bad timing! This has been going on for a few years just getting worse as time goes on. I am hoping my heart and bones have not been damaged yet.

    I had a CT scan last week which confirmed it was a tumor on the adrenal gland (rather than the pancreas as the ultrasound had indicated - that was quite alarming). I wish I'd had an MRI instead but it wasn't offered to me. You have to be your own advocate and just say no and find alternatives I guess. They like to do the CT scan first because it's cheaper than the MRI (of course it's more deadly to the patient, but why would the insurance companies care about that? It's all about money apparently).

    Anyway, I'm just trying to learn as much as possible despite feeling like crap most of the time and very weak and fuzzy headed today.

    I find it hilarious I've had all these symptoms and didn't realize! I was always healthy, fit, slim, strong, muscular. I exercised and was very active. I had a bad car accident several years ago and my cervical spine was injured which caused chronic pain and inability to sleept through the night. I lived with chornic pain for about 3 years. Terrible! I wonder if that type of prolonged stress could bring on an adrenal tumor?

    I would just like to hear of other's experiences. I only have some of the symptoms of Cushings but not others (or maybe not others yet!). I have quite a belly for the first time in my life but no stretch marks yet. I have flushing and a very reddish complexion. Tingling hands. Anxiety and depression (also for the first time in my life). Fuzzy thinking. Blurry vision. I am suddenly pre-diabetic after always having good sugar levels!

    I am very worried my heart and bones have already been compromised.

    I had been suspecting my thyroid was off for years but couldn't get confirmation and for a stretch of years did not have insurance and then only catastrophe insurance so could not see an endocrinologist. Was pooh - poohed by my regular doctor (exercise and eat a plant based diet).

    Anyways, would love to hear from anyone who's been through this and just share your experience, knowledge with me.

    This is a very scary situation to be in. I do not know yet if the tumor is cancerous or what. I don't know if I'll need surgery but I think I will.

    In addition, my doctor finally ordered an ultrasound of my thryoid and they discovered nodes on both lobes! These must be biopsied.

    I'm hit with a lot all at once. The endocrinologist says there is no relation between the thryoid nodes and my adrenal gland tumor. I wonder though.

    I go from being a person with never any illnesses, clean bill of health, no surgeries to discovering THIS - seemingly overnight (though I know realistically this has been occuring over several years time). The only medication I ever took was Advil or aspirin for migraines.

     
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    Old 08-24-2012, 11:05 AM   #2
    latda
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    Re: Possible Cushings Syndrome or Disease

    Hey! I am also being tested for Cushings. I had a stroke last year at 46. I have no high risk factors so my PA started researching why. I have gained 40 pounds in the last 2 years. I had been normal weight and active earlier. My husband had a massive heart attck 2 years ago so mine seems to be related to a high stress period also. Now I have a red round face, recent development of a buffalo hump on the back of my neck. I have huge mood swings, bouts of depression, fatigue, nausea, and progressively worse vision. I have recovered the use of my left side and doing well with the stroke part, but I still have no stamina. I am waiting to hear from the doctor to see what the next step is. Good luck. I hope you find out what is wrong!

    Last edited by latda; 08-24-2012 at 11:06 AM. Reason: sp

     
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    Old 08-26-2012, 12:48 PM   #3
    Cat64
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    Re: Possible Cushings Syndrome or Disease

    Hey! Thanks for your post! I'm so sorry for your stroke and your husband's heart attack. That was major stress. Glad you are healed so much from the stroke.

    I truly believe it is stress that sets this stuff off for the adrenals.

    Do you think the stroke was caused by the Cushings?

    I've always had a roundish face so they can't tell by that for me.

    It's so hard to wait and I don't even know if they'll be able to determine what mine is exactly -- but they have to because it's causing all these symptoms, negative changes in my body! I don't want to have a heart attack or whatever.

    I've read so much about adrenal diseases the past few weeks I finally just had to stop. My head was spinning and it was making me crazy.

    I do not have that hump on my back or neck (yet anyway). Have you done the 24 hour urine collections? I am re-doing the one for catecholamines today as the first one was "indefinite." I got very stressed and all my symptoms flared up when I heard that. I get bouts of depression too (and weepy and upset, just very dark moods - which I never had before). I have just horrible days and then a string of very good days where I almost can't believe I'm sick unti I look at how big my abdomen is. Once or twice a week I cannot sleep well, or it wakes me up and I cannot return to sleep. Very weird! This whole experience is very weird.

    I just did my MRI Friday so I will hopefully be able to meet with my doctor in a week or two at most and hear the verdict. That's what it feels like - a verdict.

    Anyways, I've been reading a lot about adrenals and I think the very best thing is to avoid all stimulants and otc meds like Advil, Tylenol etc. So, no sugar, no caffeine, no white flour. And the really key thing for helping adrenals is to go to bed early and sleep through the night. Early means 10:00 PM. When I do this (or at least by 11:00) I feel good usually. When I don't do it (like last night up til 1:30 AM), I feel terrible next day.

    I'm on pins and needles because mine doesn't seem to completely fit the profile for Cushings or a pheocromocytoma or cancer (but yet there is a mass there so it's one of them). The symptoms fit Cushings best as far as I can tell.

    Can you tell the suspense is killing me?

    Good luck with your journey with this and I wish you continued healing!

     
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    Old 08-26-2012, 01:46 PM   #4
    latda
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    Re: Possible Cushings Syndrome or Disease

    I am just beginning the DX process. They now suspect the stroke may have been caused by Cushings. They are looking for a pituitary tumor. I have had years of health issues including infertility, insulin resistance, ulcers, and multiple hospitalizations for illnesses that come out of nowhere. I am fine one day and the next I am deathly ill, dehydrated, with a high WBC, and low potassium. I recently had a bad bout of pneumonia after the death of a close family member. Stress and I are not friends!

    Good luck with getting to the bottom of your health issues. Please let me know what you find out, and I will post any news I get too!

     
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