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Guest Kathy kaluau

Suffering please help

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Guest Kathy kaluau

My son, Will, is 28 years old and a life long athlete. A year ago,he was in the best shape of his life: 180 lbs, running 30 miles per week and muscular. Then he got ill, including: high blood pressure, dibilitating fatigue, weight gain(60 lbs to date), with severe stretch marks, chronic headaches, scarring acne. Within the last couple of months they did a 24 hour urine that was positive for high cortisol. They did a second 24 hour urine that was positive for high cortisol. They then did a saliva test (two on consecutive days) that was negative. They've decided that this means he doesn't have cushings and they will monitor him. They refuse to do an MRI. He feels this is a death sentence; something horrible is killing him on the inside. He lives in Hawaii and I live in New York. I don't know how best to help him? His insurance is Kaiser and I'm told this my be part or the issue.

 

Any suggestions on how best to move forward. Kathy

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Hi Kathy, your son symptoms do sound like Cushing’s and with the three high 24-hour urines really point to the disease. From what I have read, there are people with Cushing’s that have never been able to get a positive high on a saliva test. Your son may be one of them. I am not sure how Kaiser Health care works. I would check into doing 4-6 midnight cortisol serums. http://jcem.endojournals.org/content/83/4/1163.long. He will have his blood drawn at the ER at the hospital. I was able to bypass the ER and the techs had me walk to there lab, so it was a painless process for me...others have had more difficult time having their blood taken at the ER for midnight testing.

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Hi Kathy and welcome! You are in a good place for support, information and understanding. Please don't let your son stop looking for help just because his current doctors don't understand this disease. His feeling is right---cushing's kills. I've been on this board for 6 years now and have seen many wonderful people succomb to this disease, some because they didn't see the right doctors.

 

There is a helpful doctors tab at the top of the page...maybe there is a good one on the island. Otherwise, we will be happy to suggest a doctor who understands cushings. His insurance may or may not cover the doctors who can help him.

 

Please stick around and read all you can and ask any questions you might have. 3 high ufc's plus his symptoms should not be ignored.

 

love,

melly

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Hi Kathy-

Salivary tests can be touchy. Did he take them at 11:00 pm? Did he follow the directions carefully? The reason why I'm asking is that my new endo had me do 3 salivary tests. Every one I had taken prior to that showed high cortisol. But for some reason, I really botched these. The first one I did right. The second one - I don't know what I was thinking - I brushed my teeth right before the test even though the directions said not to (I am very forgetful). The third test I opened the tube, and the cotton swab popped right out and went directly down the bathroom sink. So I did the test without the cotton swab anyway. Needless to say, the first test I was high. The second only slightly high and third I was not.

I agree with Tally. I'd see if he can get some midnight serum tests done. Please tell your son not to give up. There are many of us here that have been to more than one Endo to get to the bottom of this. I traveled an hour to my new Endo and it was well worth it. She has experience dealing with Cushing's and was able to give me a diagnosis. Let us know how it turns out for him.

Kathy

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I have Kaiser in VA. After 2 high 24 hour cortisol tests, my endocrinologist referred me to NIH. I am not sure that Kaiser has the expertise in house to effectively diagnose and treat Cushings. That said, my Kaiser accupuncturist is the one who tested my DHEA, which was nonexistent and referred me to the endocrinologist.

 

Maybe he could contact my endocrinologist at Kaiser and see what he says - Dr T Lee in Falls Church, VA. NIH treatment is free except for the transportation.

Edited by MaidM

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Kathy,

I would put your story on face book and tell all your friends to pass it along to their friends, and their friends, etc. Be sure to mention Kaiser. I'm sure someone will pick up on your dilemma. I went through a similar battle getting my condition diagnosed. Thank God my Endocrinologist was one of the best and insisted on an IPSS test after my MRI was negative. This led to pituitary surgery by a Neurosurgeon from the Cleveland Clinic. Best in the nation and true lifesavers in my book. You cannot give up. You (or your son) must take control of his health and insist, insist, insist, on getting specific responses from his physicians. Develop a team of physicians starting with a Primary Care Physician, Endocrinologist and Neurosurgeon. Good luck. Again, don't settle or accept something that doesn't sound right. The squeaky wheel gets the grease. I bugged the heck out of my team and had pituitary surgery within two months of being diagnosed with Cushings.

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