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i read an article that was about the many different causes of empty sella one of them being thyroid cancer. it lead me to a link i will post here about an ectopic ACTH source in a vaginal lining malignancy. I have found in my own studies that it is beneficial to be vigilent about rooting out the source of our cushings. some doctors just want to offer multiple band aids. like in my case. doctors suggested removing my pituitary gland or my agrenal glands or trying to sustain me w/tons of insulin & hight blood pressure meds or ketoconazol. they did not get that i had 2 little ones to take care of. i wanted to stop my body from rotting. i knew i had little time left. i did not want agonizing prolongment. i wanted the SOURCE of the cushings hunted down & cut OUT of my body. in my hereditary type of cushings even removing a small portion (debulking) of the tumor, mass, cyst, watever your radiologist wants to call it, can save or add years to your life. it is hard to find such an agressive doctor. in my case it was my sisters who stood up to doctors. demanding they order a full body octreotide scan where they found the source of my cushings, a lung tumor that did not show up on other scans. the tumor can be ANYWHERE in your body. It will produce many different hormones not just ACTH. it can be the size of a spec of dust. Looking for these other tumor markers or hormones in 24hr urine catches besides just cortisol can put us closer to our cure. since i am posting a research link i picked this forum. if it is misplaced i apologize. please see this research link: http://lib.bioinfo.pl/pmid:9190988 our illness is not rare but doctors are not taught how to diagnose it. sometimes they need our help. we need to educate ourselves. my education on this website led to my cure. thank u MaryO for giving us this medium.

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There's a fine example of patient advocacy. Thanks to the help of your sisters, you found the answer. That's amazing!

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Hope, did they know for sure that you had an ectopic source, or did they initially believe it was pituitary? Just curious because I have had 2 failed pit surgeries with no tumor ever found. I truly believe it is ectopic, possibly in an ovary...

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This is the first I've ever heard of a vaginal location for ectopic tumors but perhaps it isn't that surprising. Glad to hear you're getting what you need finally!

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re: Hope, did they know for sure that you had an ectopic source, or did they initially believe it was pituitary?

 

 

the endo said he was sure it was pituitary. the brain surgeon said no way it was pituitary after looking at at least 7 different brain/pit scans. everyone agreed the adrenals were clear. they all had varying opinions on the IPSS & CRH tests. all my family did was look up the protocol in the new england journal of endocrine medicine that said next step look for ectopic source via octreotide scan. convincing the doctor to give me the scan saved my life. i am not a doctor just a patient but i do think one of my sisters has an ovarian tumor source. she wont see an endo after witnessing what i went thru & the traveling out of NJ involved. her gyno despite our family history will not remove the tumor on the ovary. i would like her to have it removed w/an endo present in case she crashes.

 

oh and ...

http://search.yahoo.com/search;_ylt=A0oG7iddNFhP1kkAUOdXNyoA?p=crh%20showing%20ectopic&fr2=sb-top&fr=yfp-t-521

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Hope, thank you for posting. I have never heard of this, but I will look into getting an octreocide scan after my two failed pituitary surgeries found two tumors but left me uncured.

It seem like those two links point to a lot of single case studies of the one patient they saw. Now it is necessary to have one of those docs take the lead and write a paper discussing all of the cases and rooting out similarities and hopefully moving forward to a cure.

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  • 1 month later...

MelissaTX i am a huge fan of yours as well as the rest of you who push thru the pain to help all of us. I refer to your struggle often when i am trying to help others who may relate to your decision on having a baby pre surgery or post surgery. I am very happy when my brain fog lightens and i am able to type. i highly recommend the octreotide scan. it saved my life. it should be pushed whenever possible. i say pushed because even though its in the protocol many doctors refuse to do it. I encourage the curious to ask any question at all about my case. if i havent answered some please remind me.

 

zhen, Dr. Salvatori as well as one of my mothers doc's said it is very obvious that cushing's runs in my family. Dr. Salvatori said he was so convinced he did not feel genetic testing was even necesary. My mom's doc said he thinks it's on both sides of our family. He said "you know what thats called, a double whammy" My worry for the kids prompted me to consult Dr.Oberg from Sweden who gave me the following:

BLOOD WORK & TUMOR MARKERS

 

1.) Urine 5-HIAA

2.) Serotonin (5-HT)

3.) Chromogranin A (CgA)

4.) Pancrastatin

5.) Substance P

6.) Neurogranin A

 

He said that if our CHILDREN do not show symptoms then they could start regular screenings at age 20 that would include:

1.) serum Calcium

2.) plasma PTH (thyroid)

3.) plasma Prolactin

4.) plasma Growth Hormone IgF-1

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I have had 2 failed pit surgeries that never turned up an actual tumor. I desperately want the octreoscan, and my husband agrees. The doctors all refuse to do it, and my husband is getting very angry over this. My acth is never high, so no doctor thinks it could possibly be ectopic. I disagree. I don't think there is enough known about this disease to say for sure that it can't be ectopic.

 

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ectopic just means "other than in the pituitary". it could be anywhere in your entire body. is your cortisol high? docts dont understand ACTH levels anyway. they could be high low whatever & u could still b ectopic,

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I'm so glad your family and you advocated for yourself. Can you pm where you went in NJ for your scan? I know some people who had it done incorrectly here and I know they use different injections. Curious where you went. I'm post bla and still making cortisol on my own and I'd like to find my source.

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