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Dr Ted Friedman will return for his Third Live Voice Interview, Sunday, February 13, 2011, 9PM eastern time

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If a person is cured/has a remission from Cushings and ALL hormones are balanced, then why don't many people see a return of their libido? Could it possibly be a neurotransmitter deficiency?

 

Similar question as above....

If a person is cured/has a remission from Cushings and ALL hormones are balanced, then why do some still have trouble losing any weight?

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I am excited too! Thanks for putting this together...

 

My question is:

 

After a BLA, if someone has Cushie symptoms come back even though they have lowered their Hydro (and no AI results), what could cause that? Is it possible if a dosage of Hydro is too low that symptoms like weight gain or swelling, central obesity could come back....maybe because the body could be thinking it is in reserve mode with in-adequate replacement and hold on to any food we eat or hold on to cortisol...?? Not sure if my question makes sense.

 

2nd: Does Cushings possibly cause a problem with a person's metabolic "set" point? If so, could that make it difficult to lose weight even if someone is cured?

 

Thought of another one...

 

After a BLA, how do you know if you are cured? My thinking leads to believe that if you get AI kind of easily with physical or emotional stress or activity and your symptoms are improving - you would be cured. But, if neither of those things are happening and your labs show your replacement doses are correct, does that mean you are not cured? If a person seems to be "cycling" after a BLA, what would cause that?

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I have a question from the standpoint of undiagnosed and testing and/or awaiting appointments, as we know this phase can last quite a long time. Prior to my health decline I was an avid exerciser, for 15 years. I don't exercise because I love it, I do it to maintain a healthy weight and for the physical benefits that go along with doing so (energy, feeling strong, flexibility, mental health, etc) I find myself confused now. When I do exercise, my heart rate shoots up to my upper limit target heart range to even my max heart rate in no time at all. I have no stamina, my muscles are so weak it's difficult to sustain any length of time beyond 20-30 mins. For the remainder of the day I find I am not productive at all due to even more increased fatigue. Often I am sore for couple days, though I am exercising at a very low intensity comparitively. Realistically, it doesn't make sense to exert the energy, only to be set back for the remainder of the day. If I have anything I need to accomplish that day, I do not exercise for fear that I won't be able to make it through what I have to get done. Beyond that, I see no physcial results, i do not lose weight, my once toned muscles are now hidden under a layer of fat, and i have lost a substanstial amount of my flexibility. Clearly this situation is not motivating to workout, but it goes against all i have worked for in making a healthy lifestyle. At this point, are there benefits to exercising that outweigh the negative impact it has on quality of my day and productivity? It is enough to remain as mobile and active during the day as possible...after all carrying a load of laundry up the stairs puts me into my target heart rate zone for a few minutes :)

 

again, as many of already said..Thank you Dr F. for your efforts in educating both patients and endo's in Cushing's and for your time you give to people like me who desperately seek a diagnosis beyond 'diet and exercise', and for believing us when we tell you there is more than that going on!

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one more -- what is the good Doctor's thoughts on pseudo-Cushings? it is a valid diagnosis in today's medicine?

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I would really like to ask why so many of us are still feeling so poorly after having a BLA. And I don't mean just a couple of months after a BLA, I mean those of us that have waited it out and still aren't feeling cured. I still have ALL of my Cushing's symptoms and am much worse off since my BLA.

 

I would also like to hear more about the PET scan with cosyntropin to find rest tissue/ residual tissue.

Also, are there other ways to look for rest tissue?

 

Thanks!

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I would really like to ask why so many of us are still feeling so poorly after having a BLA. And I don't mean just a couple of months after a BLA, I mean those of us that have waited it out and still aren't feeling cured. I still have ALL of my Cushing's symptoms and am much worse off since my BLA.

 

I would also like to hear more about the PET scan with cosyntropin to find rest tissue/ residual tissue.

Also, are there other ways to look for rest tissue?

 

Thanks!

 

 

I second the question above. It seems the PET scan is the last possible tool to use in finding rest tissue. Would like to know how effective a PET scan is in finding rest tissue.

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Dr.F.,

What are they symptoms of Rest tissue after a Bla? Can you have symptoms of Cushings and Addisons. And how do you test for Rest tissue?

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Mary, Please note this question is not at all meant to be offensive. I know Dr F well enough I could ask him this in person, but since there won't be names attached to the questions, if you think it is too forward, just delete. Thanks.

LisaMarie

 

 

On a more "nosey" note...We appreicate all your help, care, and concern that you show to all your patients. We also appreciate all your hard work dedicated to research in the hopes that you can discover things that will allow you and other good doctors to help us better, and sooner. Since so many people have come to rely on you as their main cushings doctor, any plans to expand your "online office"? We realize their are only so many hours in the day, so I doubt you could expand your practice hours, but maybe another assistant to help with paperwork, etc.? With all the modern technology available today, maybe someone could help out remotely/electronically and take some of the burden off Lynne.

 

Just a thought...

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Non-cushie question:

 

Do you believe there's a connection between Fybromyalgia and thyroid disease, and what that connection might be?

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one more if I haven't worn-out my welcome -- I read an article that massage can lower cortisol, it was on the benefits of massage and one of those benefits was lowering cortisol. Is that a concern for someone who is testing? If so, how long would the effects of the massage last?

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If a person has undergone two pituitary surgeries and the pathology reports have come back showing normal tissue each time, with no ACTH secretion and no pituitary hyperplasia, then why would IPSS (done at a reputable center) have shown a clear-cut pituitary source?

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I have a question about renin and Florinef (Fludrocortisone Acetate) in a Post op pit patient. After two Pituitary surgeries and 3 1/2 years in remission with no adrenal function. Wouldn't the adrenals be atrophied and not producing properly? With all hormones balanced would adding a little Florinef be beneficial ? Would it help with swelling? If so what is the proper testing and how is it properly done?

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How common is it for things like asthma to reappear or get worse after a BLA? Since mine has reappeared with a vengeance, I've had to be placed on a steroid inhaler plus albuterol. Does cortef dosing need to be adjusted to account for the extra steroids in the inhaler or is it such a small dose it doesn't matter?

 

Thanks.

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What are your thoughts on pregnancy after BLA? I am aware of 1 person who had successful delivery after BLA and 1 who was pregnant, but don't know the outcome.

 

I am wondering if these two were just lucky, or if it is very possible as long as adequate steroids are taken. If someone still has very significant osteoporosis and swelling before getting pregnant, could pregnancy compound those issues and make the pregnancy much more difficult or even dangerous since being pregnant puts a lot of weight on the mother (hard for the osteoporatic bones to support) and since a lot of people swell when pregnant, swelling could be even worse and unhealthy as well increasing the persons weight even more? Could toxemia be a higher possibility post BLA due to increased steroids? What other concerns would there be?

 

Thanks!

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Great questions.

 

I would also like to hear the answer to Alicia's questions about the role of Florinef in a post-pituitary patient who is panhypopituitary still 2 years post-op without functioning adrenals.

 

In a post-pituitary surgery patient with total pituitary removal, for a recurrence, what are the best methods to test for recurrence and what are the benefits/risks of radiation vs. BLA.

 

Thanks again to Dr.F. for volunteering his time.

 

Rissa

  • Upvote 1

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Thanks for arranging this ladies,

 

I have one question

 

Does developing kidney stones during UFC testing have any effects on test results?

 

Thanks Dr. F.

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The 10 hour urine collection makes sense for a lot of patients that are "high" at night and "low" in the morning. Has this/will this test be written up for other physicians to follow?

Pat

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Hi,

 

My questions on the list of questions that have been submitted. Just wonder if anybody can tell me does this mean he will answer the question?

 

I hope so....I'm so excited. Better not get too giddy because I'm doing another two 24hr UFC's - this will be the 20th......lol!

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I don't want to miss this so when I go to the main blogtalk page I will just hear the broadcast?... or do I have to click something else or what? I want to make sure because nobody will answer while it's on I'm sure.

Thanks to Melissa and Robin, Dr Ted F. will return for his Third Live Voice Interview, Sunday, February 13, 2011, 9PM eastern time

 

 

Dr Ted F. will be our guest in the weekly Interview/Podcast series.

 

We will take written questions first. If there is time at the end, we will take callers. Please add your questions in response to this thread or PM/email them to MaryO.

 

Short Bio:

 

Theodore C. F., M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. F. has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. F. is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.

 

Dr. F.'s career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.

 

He has a private practice in Los Angeles specializing in hard-to-diagnose and treat cases of adrenal, pituitary, and thyroid disorders. He is the father of three children. Dr. F. lives in California.

 

He's the "Dr House" of endocrinology. He loves complicated cases and is an outstanding diagnostician.

 

He also has a PhD in pharmacology.

 

Kate (Fairley) and Dr. Ted F. on National Geographic TV, September 2007

 

Read Dr. F.'s First Guest Chat, November 11, 2003.

Read Dr. F.'s Second Guest Chat, March 2, 2004.

Listen to Dr. F. First Live Voice Interview, January 29, 2009.

Listen to Dr. F. Second Live Voice Interview, March 13, 2009.

 

Dr Ted F. will return for his Third Live Voice Interview, February 13, 2011, 9PM eastern. Listen live at http://www.blogtalkr...om/CushingsHelp

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What are your thoughts on pregnancy after BLA? I am aware of 1 person who had successful delivery after BLA and 1 who was pregnant, but don't know the outcome.

 

I am wondering if these two were just lucky, or if it is very possible as long as adequate steroids are taken. If someone still has very significant osteoporosis and swelling before getting pregnant, could pregnancy compound those issues and make the pregnancy much more difficult or even dangerous since being pregnant puts a lot of weight on the mother (hard for the osteoporatic bones to support) and since a lot of people swell when pregnant, swelling could be even worse and unhealthy as well increasing the persons weight even more? Could toxemia be a higher possibility post BLA due to increased steroids? What other concerns would there be?

 

Thanks!

 

I hope we can fit in some pregnancy questions. This is a really good one. There seems to be a lot of question and worry over this topic.

 

What are some additional measures we can take to get proper treatment at the ER during an adrenal crisis? Some have had very bad experiences, even with an AI letter in hand and a family advocate there.

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We have read that shift work alters a person's diurnal variation. What about naps? Do naps affect midnight testing? The crushing Cushie fatigue I face around 4 pm is so difficult to overcome, and I wonder if I pay a cost for such peaceful afternoon slumber.

 

You are the best, thanks Dr F!!!

 

Yay! Thank you Dr. F!

 

What results were you seeing from the cortisol hair samples in comparison with diagnoses of patients? Do you think this test will be beneficial in the future?

 

For those Cushing's patients with chronic pain, and with proper legal and medical authorization, what is your opinion on marijuana use in the un-diagnosed or relapsing "Cushie?"

 

I'm really interested in this medical marijuana question.

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Can Dr. F comment on the possibility of us cyclical Cushies having aberrant hormone receptors, as it is frequently associated with atypcial cushing's and increased 17-OHS? Is the treatment any different than pituitary surgery, radiation, or BLAs? Where can we go for this type of testing?

 

*******************************************

 

The article below is a 2009 related study. Click for article reprint.

 

 

The Journal of Clinical Endocrinology & Metabolism Vol. 94, No. 8 2930-2937

Copyright ? 2009 by The Endocrine Society

 

Clinical and Genetic Heterogeneity, Overlap with Other Tumor Syndromes, and Atypical Glucocorticoid Hormone Secretion in Adrenocorticotropin-Independent Macronodular Adrenal Hyperplasia Compared with Other Adrenocortical Tumors

Hui-Pin Hsiao, Lawrence S. Kirschner, Isabelle Bourdeau, Margaret F. Keil, Sosipatros A. Boikos, Somya Verma, Audrey J. Robinson-White, Maria Nesterova, Andr? Lacroix and Constantine A. Stratakis Section on Endocrinology and Genetics (H.-P.H., S.A.B., S.V., A.J.R.-W., M.N., C.A.S.), Program on Developmental Endocrinology and Genetics and Pediatric Endocrinology Interinstitute Training Program (M.F.K., S.V., C.A.S.), National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland 20892; Division of Endocrinology, Diabetes, and Metabolism (L.S.K.), Department of Internal Medicine, Ohio State University, Columbus, Ohio 43210; Endocrinology Division (I.B., A.L.), Department of Medicine, Centre Hospitalier de l?Universit? de Montr?al, Montr?al, Qu?bec, Canada H2W 1T8; and Department of Pediatrics (H.-P.H.), Kaohsiung Municipal Hsiao-Kang Hospital and Department of Pediatrics, Faculty of Medicine, College of Medicine, Kaohsiung Medical University, Kaohsiung 807, Taiwan

 

Address all correspondence and requests for reprints to: Constantine A. Stratakis, M.D., D(Med)Sc., Section on Endocrinology and Genetics, Program on Developmental Endocrinology and Genetics, National Institute of Child Health and Human Development, National Institutes of Health, 10 Center Drive, Building 10, Clinical Research Center, Room 1-3330, MSC1103, Bethesda, Maryland 20892. E-mail: stratakc@mail.nih.gov.

 

 

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The questions that have been submitted have been compiied here: http://cushie.info/index.php?option=com_content&view=article&id=948:submitted-questions-for-dr-ted-F.-interview&catid=34:interview-archives&Itemid=70

 

This is a very long list and I doubt that Dr F. will be able to answer most of these questions. He will be invited back for a fourth interview to answer more.

 

The questions will be asked in random order.

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I was happily listening when it went dead. Are we finished with the interview?

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