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MaryO

Questions for Dr Friedman

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  • January 29, 2009 8:30-9:30PM Eastern: Dr. Ted F.
     
    Please note the changed date and later 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.
     
    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 Cushing's Help and Support Guest Chat
    November 11, 2003 ?

     
    Dr. F.'s Second Cushing's Help Guest Transcript, March 2, 2004 ?
     
    friedman-book_small.jpg The Everything Health Guide to Thyroid Disease: Professional Advice on Getting the Right Diagnosis, Managing Your Symptoms, And Feeling Great (Everything: Health and Fitness) (Paperback)
     
    by Theodore C., M.D., Ph.D. F. (Author), Winnie Yu (Author)
     
    If you have a thyroid condition, you are not alone. An estimated 13 million Americans suffer from thyroid disease. The Everything Health Guide to Thyroid Disease, cowritten by acclaimed thyroid specialist, Theodore C. F., is the authoritative handbook you need to help you live with this disease. You'll learn about:
    • How the thyroid functions and dysfunctions
    • Who is at risk for thyroid disease
    • Well-known thyroid disorders-hyper, hypo, and Grave's disease
    • Far-reaching effects (weight loss and gain, anxiety, depression)
    • Treatments and living with the disease

    Complete with a glossary, additional resources, and even a section on thyroid disease in children, The Everything Health Guide to Thyroid Disease is the complete guide for everyday healthy living.

     

    Sample chapters (PDF format)

Please note that we will take written questions first. IF there is time at the end of the hour, we will take calls.

 

You may post your question here, in the chatroom at http://www.blogtalkradio.com/CushingsHelp during the chat, or by sending me an email at cushingshelp@gmail.com

 

Your name will not be mentioned on the air.

 

Similar questions may be combined to make the most of our time together.

 

Thanks for understanding!

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Can you be Hyperthyroidism and Hypothyroidism at the same time?

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What are reasons that your TSH would continue to rise even though you are increasing your thyroid/Synthroid doseage from 88mcg, 100, 125 to 150mcg in one year? with TSH doubling at the end of the year?

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After thyroidectomy and radiation, are there side effects that can cause salivary gland problems?

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Cool.....thanks for organizing, Mary.

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Great to hear Mary!! His web chats with this website were one of the first things that led me on this path. They helped explain so much to me about what might have been happening to me! So glad to see another chat with Dr. F.

 

Rissa

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I have two questions:

 

1. Is there any group of experts who work with Cushing's syndrome/disease (including complicated/cyclical patients), working on a consensus statement or guideline to identifying and treating these patients to help the medical community better understand this disease and possibly identify patients sooner. Is there enough published evidence for a guideline to be developed?

 

2. What is the current role of IPSS in diagnosing Cushing's disease, particularly in cyclical Cushing's patients?

 

Thanks Mary!

 

Rissa

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Thanks Mary!

 

It seems most cyclical cushing's patients have tumors that are of a "snotty" consistancy. This makes it difficult if not impossible for complete removal of the tumor, resulting in lower cure rates. Can a form of chemotherapy be invented to kill off any tumor cells that are left after surgery?

 

love,

melly in nv

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I have another question, sorry my thoughts come out in spurts kind of like my cortisol!!

 

For those of us who are testing and testing and testing for cushings, I can envision my tumor sending off shoots and turning into hyperplasia. What is the liklihood of the tumor growing or developing hyperplasia for those that seem to have to test for a long time?

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Thanks Mary!

 

It seems most cyclical cushing's patients have tumors that are of a "snotty" consistancy. This makes it difficult if not impossible for complete removal of the tumor, resulting in lower cure rates. Can a form of chemotherapy be invented to kill off any tumor cells that are left after surgery?

 

love,

melly in nv

 

 

Melly, not to butt in, but there is new research on that and I just posted some articles on my blog. The most recent has a link to another one.

 

xoOX

Robin

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Melly, not to butt in, but there is new research on that and I just posted some articles on my blog. The most recent has a link to another one.

 

xoOX

Robin

 

 

Any imput from you Robin is never considered "butting in!" Thanks for the information, I'm going there now!

melly

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I have two questions:

 

1. Is there any group of experts who work with Cushing's syndrome/disease (including complicated/cyclical patients), working on a consensus statement or guideline to identifying and treating these patients to help the medical community better understand this disease and possibly identify patients sooner. Is there enough published evidence for a guideline to be developed?

 

2. What is the current role of IPSS in diagnosing Cushing's disease, particularly in cyclical Cushing's patients?

 

Thanks Mary!

 

Rissa

 

Hi, Rissa. In answer to question 1, here is what has been done recently: http://home.comcast.net/~staticnrg/Cushing...mansArticle.pdf

 

There is a good thread about it here: http://cushings.invisionzone.com/index.php...8&hl=nieman

 

What I took issue with, and maybe we could expound on your excellent question(s), is that they say in there

"The evidence on which many of these recommendations have been made is of low to very-low

quality because there are limited data linking diagnostic strategies to patient outcomes as much

of the work has focused on developing, validating, and ascertaining diagnostic test performance."

But we all know that any doctor who MAY take the time to read it will not see that sentence nor will he see what's on down about the need for further research, etc.

Gotta get to bed..... more another time...

XOOX

Robin

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Are there instances when high cortisol levels can not be captured, but a hypopituitary patient with a validated tumor present would require surgery for tumor removal?

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Thanks Mary!!!!

 

 

Great Rissa, I too was going to ask about IPSS because that is my next big step (after my 3T).

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Patient post BLA 2 years ago has and ACTH of over 2000 and rising, and the patient has muscle weakness, hyperpigmentation, MRI comes back clear (Cushing's diagnosis was ACTH secreting corticotroph hyperplasia and MRI before pituitary surgery was also "clear"), IPSS confirmed cells are still there. Is this Nelson's, and should any treatment be done? If so, what? Thank you.

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Don't thank me - Robin did the initial email inviting Dr F. - and several other doctors - to do an interview.

 

It looks like we're going to have lots of questions, maybe more than an hour worth! If so, perhaps Dr F will come back for a second time.

 

When we did the first 2 text chats in 2003 and 2004 he did just that because there were so many questions.

 

Maybe some of the other doctors Robin invited will also come on and give THEIR answers to these great topics or others more specific to their practices.

 

If you want to invite your endo or other doctor, feel free. Maybe Robin can share the email she used as an invite (?).

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Some doctors are predicting that SOM 230 will be the new conventional treatment for Cushing's Disease. The trial has only included patients who achieved high ufc's on several occasions (untainted by any normal tests) Do you believe it will be an effective treatment for cyclical or intermittent Cushing's as well?

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Probably the most important question for me....can you have a few highs like a midnight serum of 11.8 and not have cushings?

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QUESTION FOR SUBMISSION:

 

Some doctors say that in cyclical Cushings the 'tumor' turns off and on thus causing its cyclical nature. Question: In your opinion, what causes cylical Cushings if a person has a confirmed tumor? Same question, however, what if the patient has confirmed hyperplasia?

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What causes the tumor to grow? Why do the tumors thrive? Any studies done on interrupting the tumor growth?

 

In the future, could a pituitary be grown in the lab and replaced?

 

In the case of secondary hypothyroidism, why isn't TSH given to the patient?

 

What is the diagnosis protocol for Cushing's in other countries? Are there new treatments or surgical procedures in other countries and do those treatments or procedures have better outcomes?

 

Why do endocrinologists have conflicting information about how to diagnosis Cushing's?

 

What environmental or biological factors influence Cushing's?

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1. What feeds pituitary tumors?

 

2. Do you think Cell Therapy (the transplantation of human or animal cells to replace or repair damaged tissue and/or cells) should be or will be used for Cushings treatment?

 

3. Do you think alternative treatments like heavy doses of shark cartilage will get rid of a pituitary tumor?

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If you want to invite your endo or other doctor, feel free. Maybe Robin can share the email she used as an invite (?).

 

 

Mornin'! Here is the letter I sent to about 10 doctors, including Dr. F and Dr. L. Dr. L has responded and is going to answer (by email) the questions I thought of and put in my letter , and I'll post those on my blog. But those of you who know him well (I've never met him) might convince him to be on a BTR show and answer questions. Actually, he agreed to do it at one time, but we never could get the person scheduling things to get it done.

 

The letter:

 

My name is Robin Smith, and I host a blog about my struggles with Cushing's Disease and how it has affected my life. I have a large readership of patients who are testing for Cushing's or have already been diagnosed. Some have had surgery and others are like me?dealing with the aftereffects. There are some questions which arise often from these patients, and I was wondering if you would be willing to answer any of them. I would like to post your answers on my blog. You are welcome to include other thoughts/ideas/questions/answers which you think may help my readers.

 

If you have any questions or concerns about this, please let me know. My goal is to provide a reliable resource for my readers plus a site which helps educate others about the disease. Your responses will be posted verbatim with credits.

  1. What tests do you consider the first-line tests for Cushing's?
  2. How do you feel about this research: When the "gold standard" becomes tarnished....?
  3. How do you differentiate the source of Cushing's? (i.e. adrenal, ectopic, pituitary, etc.)
  4. What are your thoughts on cyclic/episodic/intermittent Cushing's and the repercussions of standard testing protocols with it?
  5. What are your thoughts on subclinical/mild Cushing's and the repercussions of standard testing protocols with it?
  6. How does one find an endocrinologist who really understands testing and diagnosing Cushing's Disease/Syndrome?
  7. What are the long-term effects of pituitary tumors and removal? So many of us have multiple hormone deficiencies both prior to and after surgery.
  8. What do you think about adult growth hormone deficiency and treatment? How do you test for it? What are the cut-off's for treatment?
  9. Are there any laboratories which stand out as better facilities for tests done to diagnose/exclude Cushing's?
  10. What role does Vitamin D play in hormonal diseases/problems including Cushing's?

Also, Mary O'Connor (owner and webmaster of www.cushings-help.com) and I host a blogtalkradio show. If you are willing and interested in being a guest on a show, please let me know.

 

 

Regards,

 

Robin Smith

 

http://survivethejourney.blogspot.com

 

I have not heard from any of the others. Dr. F and Dr. L are the only two who responded. Sad, eh?

 

Hugs,

Robin

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- How significant do you feel the 17OHS urine test is and why do you think its not being used much to help in diagnosis?

- What kind of progress is being made on using hair samples to locate excess cortisol? How long before it can be used in the diagnosis process?

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