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Dr. Amir Hamrahian Answers Our Questions About Cushing's and Korlym


MaryO

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  • Chief Cushie

October 1, 2012 at 6:30 PM eastern, Dr. Amir Hamrahian will answer our questions about Cushing's, pituitary or adrenal issues and Korlym (mifepristone) in BlogTalkRadio at http://www.blogtalkr...s-our-questions

 

You may listen live at the link above. The episode will be added to the Cushing's Help podcast after the show is over. Listen to the podcasts by searching for Cushings in the iTunes podcast area or click here: http://itunes.apple....ats/id350591438

 

Dr. Hamrahian has had patients on Korlym for about 4 years.

 

Please submit your questions below or email them to CushingsHelp@gmail.com before Sunday, September 30.

 

From Dr. Hamrahian's bio at http://my.clevelandc...x?doctorid=3676

 

 

 

Amir Hamrahian, M.D.

 

(216) 444-6568

 

 

http://my.clevelandc...5&DoctorID=3676

Appointed: 2000

Request an Appointment

 

 

Research & Publications †

( † Disclaimer: This search is powered by PubMed, a service of the U.S. National Library of Medicine. PubMed is a third-party website with no affiliation with Cleveland Clinic.)

 

Biographical Sketch

 

 

Amir H. Hamrahian, MD, is a Staff member in the Department of Endocrinology, Diabetes and Metabolism at Cleveland Clinic's main campus, having accepted that appointment in 2005. Prior to that appointment, he was also a clinical associate there for nearly five years.

 

His clinical interests include pituitary and adrenal disorders.

 

Dr. Hamrahian received his medical degree from Hacettepe University in Ankara, Turkey, and upon graduation was a general practitioner in the provinces of Hamadan and Tehran, Iran. He completed an internal medicine residency at the University of North Dakota, Fargo, and an endocrinology fellowship at Case Western Reserve University and University Hospitals, Cleveland.

 

In 2003, he received the Teacher of the Year award from Cleveland Clinic's Department of Endocrinology, Diabetes and Metabolism. Dr. Hamrahian speaks three languages -- English, Turkish and Farsi -- and is board-certified in internal medicine as well as endocrinology, diabetes and metabolism. He is a member of the Endocrine Society, Pituitary Society and the American Association of Clinical Endocrinologists.

 

Education & Fellowships

 

Fellowship - University Hospitals of Cleveland Endocrinology

Cleveland, OH USA

2000 Residency - University of North Dakota Hospital Internal Medicine

Fargo, ND USA

1997 Medical School - Hacettepe University School of Medicine Ankara Turkey

1991

 

Certifications

  • Internal Medicine
  • Internal Medicine- Endocrinology, Diabetes & Metabolism

 

Specialty Interests

 

Cushing syndrome, acromegaly, pheochromocytoma, prolactinoma, primary aldosteronism, pituitary disorders, adrenal tumor, adrenocortical carcinoma, MEN syndromes, adrenal disorders

 

Awards & Honors

  • Best Doctors in America, 2007-2008

Memberships

  • Pituitary Society
  • Endocrine Society
  • American Association of Clinical Endocrinologists
  • American Medical Association

Treatment & Services

  • Radioactive Iodine Treatment
  • Thyroid Aspiration
  • Thyroid Ultrasound

Specialty in Diseases and Conditions

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  • Chief Cushie

Thanks so much, Betseebee.

 

We still need questions from folks in advance. :)

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It would be very useful to discuss the experiences of patients on Korlym recently who are diagnosed with Cushing's, or with recurrence, cyclical or episodic and on Korlym. Specifically, how is the performance of Korlym and the severe adrenal insufficiency being monitored and adjustments made, if at all, in those who gain benefits and mitigate severe adverse reactions with patient initiated dosing experimentation leading to dosing regimens of every 2-3 days and at less than recommended doses? This has allowed folks to remain on the drug, have far fewer complications and gain improved glucose and weight control. As normally rx'ed these folks would have to discontinue the drug.

 

These patients get benefits with less Korlym and with less frequency due to its effects and very long half life. Is any organized monitoring of these post trial, more cyclical cases being undertaken? The company seems to wave off or dismiss these reports yet they are critical to understanding how fully the drug may be used by so many who it otherwise makes too ill.

 

Studying this group may also provide further insights into unpredictable, episodic and cyclical disease, as well.

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I have several symptoms of Cushings: weight gain around middle, puffy face, extreme fatigue/no energy, feel weak going upstairs, buffalo hump, insomnia, numbness in feet, headache...

 

Do not have: Striae, skin that bruises easily, slow healing cuts, acne, more body hair, absent menstrual periods

Other Symptoms: Lymph glands in neck burning/throbbing from time to time, still reoccurring knee pain (Lymes?)

 

Recently diagnosed/treated for Lymes disease

Creatinine 1833 (Range 700-1800)

Positive Thyroid Antibody test (not extremely high though 76 (Range 0-34)

TSH 2.5 in April now 1.650 (Range 0.340-4.820)

Free T4 0.74 (range 0.59-1.40)

Low Vit D. Treated

white cell count normal

 

 

 

I took the 24 hour Free urine Cortisol test and it was only 2.5 points above the normal range 52.5 (range 4.0-50.0). I have another appt. with Endo but should I just cancel it as she said unless my Thyroid levels were out of range she would not treat me? I feel so horrible...mainly from the extreme weight gain and fatigue. I don't know what I should do next? Could this be Cushings? Hashimotos (but not affecting my thyroid levels yet), still Lymes disease?

 

Appreciate your insight and Medical Expertise :)

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  • Chief Cushie

Thanks to Robin (staticnrg) for making a wonderful co-host, as always :)

 

Listen to tonight's interview with Dr Hamrahian at http://www.blogtalkradio.com/cushingshelp/2012/10/01/dr-amir-hamrahian-answers-our-questions or soon on iTunes podcasts at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

 

Dr. Hamrahian has agreed to return at some point in the future to answer more questions for us

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  • Over 2000 Posts

I can't imagine that anyone with Cushing's would want to chance passing this gene along.

 

I wish there was a more candid discussion about this. Far too many women are wondering about the risks of passing Cushing's along in some form to their children. Some have chosen to adopt, others to not have any more children period (because of the fatigue of the disease), and other still choose to pursue live births.

 

I personally can't wait to have my tubes tied and move on without worry. My son is already trending towards symptoms and I wouldn't wish this on my worst enemy, let alone a child...

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  • Member of the 1000 Post Club

Well, I'd say it shouldn't be too long now before there is acknowledgement and cure, but after watching Dr. Drew and the segment on Acromegaly the other night, and the way he completely and so conspicuously avoided ANY mention of ACTH producing tumors, I don't know that there will be in our lifetime. He mentioned prolactinomas and said they were the most common, blah blah blah, talked ALLLLL around it. It couldn't have been unintentional. This is coming from high places. I guess the drug companies have more power than even we know them to.

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