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March 25, 2003

Community Resources

Question from Hamilton Square, New Jersey, USA:

I am 34 years old, was diagnosed with type 1 diabetes two and a half years ago, and I have been to all four endocrinologists in my area. I am currently seeing a general practitioner who came highly recommended and is doing a good job with my thyroid, but I desperately need someone to help me with diabetes control. I have been to three dietitians in my area, all of whom gave me the same exact information (just common sense stuff), and I felt like my time had been wasted. All were part of the diabetes centers, and each endocrinologist referred me to one. I have searched many web sites and spoken with many doctors, but I just keep ending up in the same place. I currently see a therapist so I have someone to "vent" to, because all the doctors I have been to are so very busy and rushed that my questions and complaints have always seemed to fall upon deaf ears. My therapist agrees that I just need a good endocrinologist who will work with me to control my sugar. I have been told by my primary care physician, who basically just writes out my referrals to all these specialists, that the diabetes specialists in our area are really just okay, and he understands why I am having a hard time finding someone to help me, but that he really doesn't know anyone great outside of our area. I was even considering traveling out of state if the endocrinologists there could help, but I don't know if that would do any good. I just want someone who knows what they are doing with type 1 patients. I want someone who is familiar with all the latest research, available products, the best way to take care of myself. I want a top doctor. Please can you recommend anyone? If I have to travel two hours I will.


I am so sorry you are having such a difficult time finding a health care provider who meets your needs. I would like to suggest that you start attending an insulin pump support group (many people in pump support groups don’t have pumps) where you will find other people your age with type 1 diabetes. You can talk to them about your difficulties, and maybe they will have some suggestions for you of providers they go to for their care and who are very up to date.You can ask any of the diabetes centers about the pump support groups or ask for the phone numbers and call the manufacturers representatives. They will know where the groups meet.

Additional comments from Dr. Philip Ledereich:

The problem you are having is a common one. Jeff Hitchcock recently wrote a piece about the problems of pediatric endocrinologists, which is true about adult endocrinologists as well. Reimbursement is terrible, the hours are long, the patient load is very high, and in order to make a profit, people must be seen en masse, so you just become a number.

You have to really be aggressive and learn all you can. Join several Internet discussion groups, ask questions, and remember, you have to take care of yourself. Read a lot, go to your local library, do not take anything for granted.

Good luck.