Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman 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. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.

Dr. Friedman’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.

Read Dr. Friedman’s First Guest Chat, November 11, 2003.
Read Dr. Friedman’s Second Guest Chat, March 2, 2004.

Listen to Dr. Friedman First Live Voice Interview, January 29, 2009.
Listen to Dr. Friedman Second Live Voice Interview, March 12, 2009.
Listen to Dr. Friedman Third Live Voice Interview, February 13, 2011.

From http://www.cushie.info/index.php?option=com_content&view=article&id=1146:dr-theodore-friedman-interviews&catid=10:media&Itemid=18

We invite you to help us create better information, tools, and resources for people with Cushing’s Syndrome

How: Share your opinions and give input in a one-on-one confidential interview. Your opinions will remain confidential. The overall results will help others with Cushing’s Syndrome.

When: Market research interviews can be conducted by phone or in-person, in a location near you. The interview will last approximately 45 minutes.

If you are interested in a phone interview or in-person interview, please contact Clair Carmichael Johnstone (see details below). More information (including cities and locations for in-person interviews) will be provided on the phone.

Am I Eligible? If you’ve been diagnosed with Cushing’s Syndrome and still experience symptoms of Cushing’s you are eligible to participate. Cushing’s Syndrome includes: Cushing’s Disease, ectopic Cushing’s and adrenal Cushing’s. Patients should have been diagnosed within the last 10 years.

At this time, patients who are in remission, were diagnosed more than 10 years ago, or have had a bilateral adrenalectomy are not eligible for research.

Details: Participants eligible for market research will be asked to participate in the 45-minute interview. Patients participate also receive an honorarium (payment) for your time. Those who participate in an in-person interview will be compensated $250 and those who choose a phone interview will receive $125 for their time.

Why? Corcept Therapeutics is interested in hearing from people who suffer from Cushing’s Syndrome in order to improve treatment and information available. This can lead to improved education and resources for those with Cushing’s and physicians treating Cushing’s.

How do I find out more?
If you have questions or would like to participate, please contact Clair Carmichael Johnstone at:
Toll-free number: (800) 856-6706, or
E-mail: cushing@compasshc.com

Please provide your name, phone number, and the best times to reach you so we can follow up promptly.

I don’t know how or why we did but a Registered Nurses website awarded us a Top Cushings Blog award:

RegisteredNurse.org

This post is by Judy, a long-time message board member who is in the middle of Cushing’s patients.  Both children and her ex-husband have dealt with Cushing’s.  Judy is a Cushie-Blogger.

She posted this on her blog at http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html

Okay, I’m probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost…….

I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn’t good (understatement).

Now here is the *but* & my own little personal rant.

A Cushing’s patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn’t accomplish something that day.
4.Being able to find an understanding doctor that isn’t halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn’t feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn’t have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.

This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn’t usually affect every system in the body. If you get a cure from cancer you aren’t usually left with permanent damage to random body systems.

Statistics say that Cushing’s is rare. I know it’s not. As the Cushie community says – it’s just rarely diagnosed. Most people think they don’t know anyone with Cushing’s. Most people would be wrong. They just don’t know a diagnosed Cushing’s patient.

That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing’s. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing’s. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing’s. You laugh at her but you know what? This disease doesn’t discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing’s truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.

As a wonderful neurosurgeon has said “Cushing’s kills.” It just does it at a very slow, painful pace.

MaryO’Note:

This is fantastic, Judy. Thanks for saying it!

I’ve often seen that stupid FB post and haven’t reposted it.

I am both a Cushing’s and a cancer survivor. For me, the cancer was easier to deal with.

I have been dealing with Cushing’s and the after-effects since the early 1980′s.

All I’m left with after my cancer is a scar and some bad memories.

I think Sarah’s death got lots of us thinking. We’ve seen so many unnecessary Cushing’s deaths and it just breaks my heart.

Judy, may I use this as a guest post on my Cushing’s and Cancer blog? It’s perfect!

Things I’ve learned and wanted to share

By LindaP, with a little help from other Cushing’s Message Board members. This is a continuing list, if you want to share.

I have learned so much on this Cushing’s journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.

Obviously – my own opinions here!

My best wishes to everyone on their Cushing’s journey.

Linda

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

1. Trust your instincts.

2. Trust your instincts some more.

3. Do your research – read everything you can, talk to people, use this website and the message boards. Slog through research papers. Not all of it will make sense, but it is amazing how much you can learn, and how much it will help you on your diagnostic journey.

4. Not everyone will have every one of the “typically described” symptoms of the hump, moon face, straie, and central obesity. Some people get them all, some people get some, and others don’t develop these signs.

5. While substantial weight gain is very common with Cushings, there are some people who have only mild or moderate weight gain. What seems to be the common thread, however, is the inability to lose it in spite of diet and exercise.

6. You don’t need to test positive on every single test, or test positive on every type of test, to have Cushings. There is substantial variation in how we present with the disease, and in which tests will identify the excess cortisol in our bodies. Do not let a single negative result on any one test, or negative results on a particular type of test, prevent you from aggressively pursuing a Cushings diagnosis if there is strong suspicion. For example, it is possible for an individual to have proven Cushings without ever having a positive on a ufc or dex suppression test.

7. Do not waste time, energy and financial resources on unhelpful doctors.

8. Whenever possible, get to a true Cushings expert as soon as the disease is suspected.

9. When seeing a new endocrinologist, don’t be afraid to ask:

a. What is your opinion on cyclic or intermittent Cushings?b. When and how might you diagnose a mild or early case of Cushings? Do you recommend treatment in those cases?

c. Do you believe it is possible for someone to have Cushings without all or some of the commonly associated stigmata (straie, hump, moon face, substantial weight gain)?

d. What is your diagnostic criteria for Cushings?

i. Lab tests

ii. Physical symptoms

iii. Imaging

e. How many patients have you diagnosed with Cushings?

f. What surgeon(s) do you recommend and work with for your patients with tumors that are causing Cushings?

g. If Cushings is suspected, how can we work together to maximize testing to give us answers as quickly as possible? How can I most easily get my test results from your office?

10. Make sure your doctor is willing to support the amount of testing that may be necessary to allow you to begin to distinguish between high and low periods. Make sure your doctor is also willing to support multiple types of tests to appropriately rule in/out Cushings.

11. Create a binder and get copies of every single test. (Make additional copies of test results so that you have extra available to perhaps send in advance to a new doctor, or to be able to readily provide a copy during your appointment as necessary). Get copies of clinic notes as well. Organize them into the binder. My binder has the following tabs:

a. Spreadsheet that summarizes most relevant test resultsb. Current medical history/summary of symptoms

c. Imaging reports

d. Cortisol test results (serum, salivary, ufcS)

e. Other lab results (including EKGs and other relevant tests)

f. Eyes (visual field tests, letter from eye doctor, etc)

g. Clinic Notes

12. Research tests. It is not uncommon for a test to be ordered or interpreted incorrectly.

13. MRIs are only tools. They can be interpreted differently by different people and they may not accurately identify the extent or location of a tumor.

14. Create a spreadsheet, or use a journal, to track symptoms daily. Log test results so that you can begin to see patterns. Symptoms may be as subtle as canker sores, or cracked lips or skin, a single pimple, or may be more obvious such as severe swings in mood and energy levels, insomnia, bad acne, etc. Write it all down and track it.

15. Test whenever you feel different.

16. Symptoms of a high for you may or may not match what is typically described for a high. You may experience a high differently. For example, achiness is frequently described as a low symptom, but it may occur during a high in your case. Tracking symptoms and correlating test results help to identify patterns of a high.

17. Start testing your own blood sugar to identify any possible blood sugar problems and to look for possible correlation between episodes of high blood sugar and high cortisol levels. This won’t apply to everyone, and may not be useful in your case, but it was very helpful to me. A very good Walgreen’s brand glucometer is only $20.

18. Get a blood pressure cuff and start checking your own bp at home. Look for patterns there as well.

19. Summarize test results for your doctor (PCP, endocrinologist, or even surgeon). Create a simple table that shows your relevant test results over time.

20. Collect photos that illustrate how your physical appearance has changed.

21. When researching surgeons, learn as much as you can about the different techniques and approaches. Some may seem similar, but there are differences that are important to understand.

22. When interviewing surgeons, the following questions may be helpful (mostly pituitary focused):

a. How will you approach the tumor?

b. What instruments are used? Endoscope? Microscope? Both?

c. What incisions are made?

d. Do you need to clear any kind of path within the nasal or sinus area for your instruments? How will you do that?

e. What stitches will I have?

f. Do you use a “fat plug”?

g. Do you use a lumbar drain?

h. Will there be any nasal packing?

i. How will my head be immobilized during surgery? (Is a “halo” used?)

j. Do you use Doppler to localize the carotid arteries? (not necessary in fully endoscopic procedure as I understand it)

k. Describe your approach to locating any tumor seen on the MRI, and what you will do to find any other tumors that may be in, on, or around the gland.

l. Under what circumstances might you find it necessary to remove either part of the pituitary gland, or all of it?

m. How many of these procedures have you done?

n. How long have you been performing this particular procedure?

o. What are some typical complications that occur with this procedure? How do you manage those complications?

p. Based on my MRI, is there anything in particular that might suggest greater risk of diabetes insipidous or other long term complications with this surgery?

q. Tell me what to expect in terms of post-operative pain and how it will be managed.

r. Is an ICU stay typically necessary?

s. How long can I expect to stay in the hospital?

t. Do you give steroids intra-operatively?

u. When do you test post-op cortisol levels? What is the cortisol replacement therapy protocol? If my endocrinologist is out of state, who will be monitoring that part of my testing and prescribing cortisol replacement as necessary?

v. When can I travel to return home?

w. What restrictions will I have once discharged? (Lifting, noseblowing, how I sleep, driving, exercise, etc)

x. How do I contact you if I should have any problems or concerns once discharged?

y. How will you communicate with my endocrinologist regarding the results of my surgery?

z. What is your protocol for following up with patients post-operatively?

aa. What is your rate of post-operative sinus infection?

bb. What is your rate of post-operative diabetes insipidous, both temporary and long-term?

23. These questions for your endocrinologist may be helpful once surgery is planned:

a. How will you determine my post-op cortisol replacement needs?

b. At what point will you recommend that I begin tapering my dose? What are your guidelines for each step in the weaning process?

c. Based on my case and your experience with other Cushings patients, what might I experience during the recovery period? How long before I feel “better”? What restrictions will I have?

d. When and how will you determine if other pituitary functions should be tested post-op? How will you test other pituitary functions post-op?

e. Do you provide a prescription for emergency injectable hydrocortisone?

f. Do you provide written instructions I may carry for Emergency Room staff in the event that I have an adrenal crisis?

g. How long should I expect to be off work?

h. How will you follow up with me post-op?

i. What is the best way to reach you if I have any questions or concerns after surgery?

24. Participate on the Cushings Boards to support yourself and others through the Cushings diagnosis and treatment journey. (You’ll also make some new friends.)

From the message boards and and MaryO’s personal experience

More about Kate

• MRI Films (originals plus a CD)
• updated medical records. Anyone who goes for surgery needs to have a back-up set of records with them. Some doctors like a list all of labs on a spreadsheet with dates, results, etc. on them to make it easier for them to go through. However, Most doctors want to see the actual test results. Have both forms, if possible.
• nightgowns
• robe, slippers
• extra pillow, if needed
• microfleece blanket
• book or magazines Adrenal people: you may have trouble resting things like books on your stomach post-op so magazines or paperbacks are a better choice than hard cover
• Sudoku / crossword puzzles
• shampoo, conditioner
• comb, brush
• toothbrush, toothpaste, deodorant
• lip balm
• lotion
• Puffs Plus with lotion
• underwear
• maxi pad/tampons
• cool max sports injury gel pack
• medications Note: Check with your doctor – the hospital may not allow you to take meds from outside.
• Crisis letter
• medic alert bracelet
• an iPod/charger or some CD’s and small player
• pants with a loose elastic waist are good, or a long, loose dress.
• cell phone and charger Note: Check with the hospital. Many do not allow the use of cellphones.
• list of cell phone numbers of people to call from the hospital
• change of clothes to wear home. Adrenal people: pants with a loose elastic waist are good, or a long, loose dress.
• digital recorder so that you can record any instructions if need be after surgery
• huge, cuddly teddy bear
• mints for dry mouth
• Buy a COOL GEL SPORTS INJURY PACK (Walmart or Walgreens) and wrap it around your head and back of your neck when you have a head-ache or are feeling bad. The cool settles your tummy, relieves the pain and swelling in the tissue around the head and neck that is irritated from surgery.
• Take advantage of the moisture-ventilator that they give you in ICU and be sure to request or demand that they let you keep it after you get to your room. It relieved the dry pain that my nose had and made the whole thing WAY less painful than others have said it was for them. ALSO…if you buy one of those $30 cool water humidifiers from Walmart/Target for you upon your return home…you will LOVE the moisture it gives you and it will make your nose feel MUCH better, MUCH faster!
• New! Autumn adds: “Can I add a couple items to the list that turned out to be LIFE-SAVERS for me? My husband went to Wal-mart and got a gel ice pack that is made to wrap around an arm or leg for sports injuries…The gel pack goes in the freezer and then in …a sleeve that velcros. It is the perfect size to go around your head and it is sooooo helpful for headaches and swelling! LOVED IT and used it for a couple months after surgery!!!! A great $10.00 purchase!”

Optional, if used:

• nightguard for teeth
• cpap and oracle mask
• Growth hormone and supplies
• camera
• deck of cards

Information about this survey and your consent to participate

Patients with Cushing’s syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing’s syndrome. We want to learn more about the patients’ experience during the post-surgical recovery phase with particular reference to quality of life. We are inviting patients like you who have had surgical treatment to complete the survey. Your responses will be gathered anonymously and will be treated confidentially; we hope to use them in a publication so that other physicians can learn about these issues.

Please kindly complete the following online questionnaire which is comprised of approximately 27 questions and should take around 15 minutes.

Take the survey here: http://csrecoverypatient.nichd.nih.gov/cssurvey/patientaccept.html

Do you have a story of how health IT, especially access to data, helped in a case?  Improved an outcome, speeded a diagnosis, caught an error, anything?

The National eHealth Coalition is looking for real-world anecdotes, for use (anonymized or not) in their new “NeHC University”:

On June 20th we are hosting NHIN 304 – HIE Success Stories from the Patient Perspective. Our goal for that class is to get some stories from/focusing on patients whose health was improved or whose care was made more effective as a result of health information technology and exchange. …

We are not necessarily looking for patients to speak on the webinar (although that would be great), but we do want to share some patient-centric examples that will emphasize the value proposition of health information exchange from the patient/consumer perspective.

To contribute, write directly to NeHC’s Jenna Bramble at jbramble@nationalehealth.org

twinkie from the message board writes:

Hello all! As some of you know I have written and published a book. I’ll be interviewed tomorrow (May 25, 2011) and I asked the interviewer if, along with questions about my book, she would ask one or two questions about Cushing’s. TRYING to get the word out! I’m also doing a blog tour and most of the hosts have been kind enough to put my bio up on their sites which includes information about cushing’s and this site.

Here is the link if you want to listen in: http://www.blogtalkradio.com/jennifer-walker/2011/05/25/a-cup-of-coffee-and-a-good-book

The podcast is at 3:30 Pacific time.

You can also find info regarding my tour at authormellareese.blogspot.com You don’t have to buy a book but you could always ask a question about cushings in the comment section of the hosting blog.

Thanks Mary O for this fabulous tool you’ve created here! You saved my life.