Cushings, Support Options

[Guest_Guest_Dawn_*_*]

Hi everyone. My name is Dawn. I'm 36 and i've been diagnosed with cushings. We are now in the process of waiting on the scheduling for my Bilateral IPSS test to find out if my tumor is in my pituitary gland or in my lung. I am so frustrated with the whole ordeal. I now have liver problems, high cholesterol, severe weight gain, vision problems. I try to hold it together, but it's hard. My family and friends are supportive but they don't understand how alone I feel. I'm afraid that I will not survive. Any support would be great.

[alexsmom]

Hi Dawn, and welcome to the boards,
Please sign up to become a member, you will find a wealth of information here. There are many of us here who have been through IPSS, surgery etc. and can help you with encouragement and advice.
Rene

[twinkie]

Hi Dawn and welcome! You are in a good place for support, information and understanding. Where are you having your IPSS and who is your endo? I know you are feeling alone and scared. Don't worry, you are not alone and we'll help you get through this. I had an IPSS at UCLA about a year ago. For me it was a walk in the park.

You said you were having the IPSS to see if your tumor was on your pit or in your lung. Do you have a tumor in your lung? Have you had an MRI of your pit?

I want to wish you the best of luck! Please keep us posted.
love,
melly in nv

[CindyRPT]

Hi Dawn,

You have gotten past one of the hardest things to do...get a diagnosis! So I'm happy that you are moving along. Cushing's wreaks havoc on our bodies, both physically & emotionally, and all of us here know EXACTLY what you are feeling and we're here to help. Sign up on the boards so you can take full advantage of this site. Lots of questions with great answers from people who have been through exactly what you are going through right now. This board will not only provide information, but comfort in knowing that you are NOT alone.

Hang in there ...you are getting close to surgery!

Hugs,
Cindy

[ddalton57]

Thanks to all that responded to my message. I just signed up an became a member so I look foward to chatting with you all.

[KristenTwedt]

I have contacted Cushing's specialists at Massachusetts General Hospital and the University of Alabama at Birmingham about my 15-year-old daughter. They are doctors listed here as those who provide Cushing's evaluations.
To their credit, they responded quickly and offered their insight willingly.

I provided her list of symptoms, all of which fall under the Cushing's umbrella, as follows:

Lumbar epidural lipomatosis
Hyperglycemia and insulin resistance (positive anti-GAD)
Autoimmune thyroiditis (elevated anti-TPO)
Vitiligo
Myopathy (abnormal EMG, elevated pyruvate and lactate, normal nerve conduction studies)
Ovarian cyst (right ovary)
Kidney stones
Osteopenia (left hip) (on calcium supplements)
Intermittent hypercalcemia
Intermittent low vitamin D
Scoliosis
Kyphosis
Vertebral osteophytes
Abdominal obesity (weight fluctuates as much as 10 pounds within 24 hours)
Nonspecific eczema (skin biopsy)
Sicca syndrome (dry eyes, thick saliva, mouth dryness)

She has had one 24-hour urine free cortisol test at Mayo Clinic that came back normal. She had two MRI's of the pituitary read as normal by radiologists.

These specialists have indicated that because she is tall and because Mayo Clinic has ruled out Cushing's, no further testing for Cushing's is indicated.

We have not had a midnight salivary cortisol test done. I just picked up the test kit for that from her endocrinologist. We have not had any of the other testing done, yet these specialists say it's not needed.

Do I stop the pursuit of a comprehensive Cushing's evaluation? I feel like an idiot. My daughter has seen doctors at the best endocrine research facility in the country. They say she doesn't have Cushing's. Do I stop pressing, even though I know all the tests that should be done have not been? She certainly seems to fit the profile provided here and at sites for medical information. But maybe it's time to look at something else? If so, what?

Most importantly, I feel like I have failed my daughter. Eight years of sitting for hours in exam rooms, waiting on test results and popping handfuls of pills daily, pool walking and scrathing out as much physical activity as she can stand and she is no better, but getting worse.

If anyone has any suggestions, I would be most appreciative. The brick wall just won't relent, it seems.

Thanks,
Kristen

[rooon55]

Although I have heard that Mass general is a good place to go.. ...... but I have a friend that lives in MA right outside of Boston that was turned away from there. She did go on to visit Dr L in Seattle and has had one failed Pituitary surgery and gone on to have a BLA. She is doing really well. She told me that Mass General does not really consider Cyclic Cushing's cases...this is What your Daughter might have. She can possibly cycle high and low therefore making it hard to catch high tests.
Most of us have ended up traveling to see a true Cushing's specialist. I live in Vermont and after going from Dr to Dr for 5 years, I bought a ticket west and went to Dr L.. I said if he tells me there is nothing wrong with me i will quite looking a learn to live like I am. Within 10 minutes in his office he told me that he thought I could be suffering from Cyclical Cushing's. I went on to test with him and in 9 month gathered all of the bio-chemical evidence I needed to move on to Surgery. It is 3 years later, 2 Pituitary Surgeries to put me into remission, and I feel pretty good. Almost feel like my old self.
So my answer to you is never give up...always believe in yourself (your daughter should always too) And never give up. Not everyone in our Medical Society was an honor student.

Welcome and Hugs,
Karen

PS Being tall has nothing to do with this