1. Community
  2. Diabetes and hormone problems
  3. Cushing's Syndrome

Cushings Disease

Posted , 3 users are following.

kathy90827
kathy90827

I went from building homes, high energy , 119 lbs, to being unable to function normally, crying, depressed and a weight gain to 226lbs in six months, weight gain face , front torso, red moon shaped face (bright red), menses stopped, big buffalo hump , saddle bags on upper back, blood cortisol high, uncontrollable diabetes,recent High cortisol urine( found out all others I had during the years  had an additive in the collection container that destroyed cortisol). I now have Severe Osteoporosis, I have known from around 2000, that I have an Adrenal benign tumor, which has enlarged to double what it was,  I have to much carbon monoxide in my blood, I can go on and on , My vascular surgeon said I was a Postor child for Cushing's, eight years ago he sent me to a group of surgeons, they called me and said they agreed that I probably had Cushings, but did not meet all the cryteria, In the past I have been admitted to the hospitals four times, racing heart and ECG would show heart attack, but no heart attack, they couldnt figure out why , Two years ago my baby sister did the same thing, only she had a doctor that was on top of it, she had surgery several months ago to remove her adrenal tumor, and is now slowly loosing weight, I am glad they diagnosed her fast, I have actually been dealing with this for 19 years, How can an Endocronologist continue to ignore these symptoms?

0 likes, 3 replies

3 Replies

  • cycliccushings
    cycliccushings kathy90827

    Posted

    Kathy

    Your description is almost exactly the same scenario as mine. I was the first person diagnosed with "cyclic" Cushings in the U.S. in 1989, they didn't believe me either. I had 23 doctors when they diagnosed me, and I allowed them to put me in the ICU and test me for 7 days with

    Medications and raking blood out of me every few minutes. I thought that I had taught them to understand Cushings better, but after almost 30 years they are still expecting all of us to fit this perfect

    As the textbook says, but they are so wrong.because not one of us is exactly the same in symptoms. The Endocrinologist I fine are arrogant and playing God with lives. I was saved when they finally did a MRI on my pituitary area with dye, the radiologist could just see the stalk of the pituitary was bent suggesting a tumor. In my opinion any tumor that is secreting cortisol or ACTH into your system needs to be removed immediately. I do not know where you live, but my suggestion is for you to take your test results and if you have pictures, full body of yourself before cushings and show the changes with photos as a picture is worth a thousand words, and go to the surgeon your sister had. If that doesn't work then let us know here so we can suggest.other ideas for this. I know how hard this is, I just had a reocurring pituitary tumor and had to go thru the surgery again may of 2016. So we need to know where you live, I live in the U.S. in Washington state. Believe you can get the help you need, hopefully this surgeon of your sister will help you. My Regards.

  • Guest
    Guest kathy90827

    Posted

    I a actually can't believe this immediate family history of it , how do u not fit the criteria exactly ? What a heap of crap this makes me so angry 😡. Have they not got you to do more urines or salivaries , if not find some one that will let you do them , they are unbelievably clueless only the specialists of specialists are any use with Cushings . I've been told I don't have the red stretch mark and my legs arent thin enough in comparison to stomach for Cushings which is ridiculous because my son was 10lb 11 so my stomachs been stretched to oblivion so I ain't gonna happen . I swear thousands have this probably in cyclic form and never

  • Guest
    Guest kathy90827

    Posted

    I cant actually can't believe this ! U have an immediate family history of it and they agree you are a poster child for it , how do u not fit the criteria exactly ? What a heap of crap this makes me so angry 😡. Have they not got you to do more urines or salivaries , if not find some one that will let you do them , they are unbelievably clueless only the specialists of specialists are any use with Cushings . I've been told I don't have the red stretch mark and my legs arent thin enough in comparison to stomach for Cushings which is ridiculous because my son was 10lb 11 so my stomachs been stretched to oblivion already so I ain't gonna happen . I swear thousands have this probably in cyclic form and never get diagnosed and are probably accused of hypochondria or something similar. The best endo in town is probably gonna be a waste of time u may need to travel , but they will retest u if you have all this going on . I went back to the dr to ask for a specialist referral and he send me to a diabetic specialist which considered Cushings absolutely impossible because of rarity and me not being poster child . He ridiculed me and accused me of making it up it was humiliating. I had to pay to travel to see someone who was fab but still no diagnosis as labs are inconsistent some normal , 1 high normal one abnormally low so I am emailing the results and hope he won't give up on me . If you are in the uk message me and I can tell you where to go . X

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.