Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Wednesday, March 26, 2008

Addison's: Choosing a doctor

HN sent me the link to this New York Times article:

But First, Doctor, What Was Your Marathon Time?

Don't be intimidated by the title, it's about choosing a doctor who is like minded so that you get the best treatment possible, especially if you're active.

When I was getting diagnosed about 7 years ago, I barely remember flailing around trying to find a doctor. What I do remember is calling the University of Utah and being put on a 3 month waiting list by a rude, uncaring receptionist. My office experience was much of the same. Rude, uncaring doctors who ridiculed me for doing my own research and accused me of being depressed. Recently, a woman with whom I've been friends for 25 years was put into adrenal suppression by massive doses of injected steroids and then she was not tapered. She's still struggling with adrenal suppression now, months later.

Thanks to all of you emailed me and sent information for my friend. From J and J, I received many referrals. Thank you Ladies! I called a three of the doctors that looked good on paper and here were the very, very different results.
  • I called a doctor in central Jersey. The receptionist sounded like she had a mouthful of gum and tried to assure me the doctor had experience with adrenal patients. When I asked her if she could ask the doctor what kind of adrenal patients he had, she ridiculed me and told me she "didn't have an alphabetized list of patient diagnoses". Once again, I asked her to ask the doctor. To her credit, she called me back within hours. She couldn't tell me what type of adrenal problems her doctor treated but most of his patients were thyroid and diabetes.
  • I called a doctor on Long Island, got his answering machine, his voice was that on the machine, I left a message. That was over a week ago, I haven't heard from him.
  • Lastly, I called MacLaren in Manhattan. He's a pediatric endo but treats adults. My experience has been as follows:
    • Spoke to the receptionist who spoke clearly and pleasantly. She asked all the right questions and seemed truly compassionate. She apologized for not being able to make an immediate appointment for my friend because the doctor spends over an hour with every new patient.
    • At 6:15 am, my phone rang and someone left a message. I checked the answering machine and it was the actual doctor. Tell me, how many of you have ever had the doctor call you?!?! I live in small town USA and it doesn't frequently happen here.
    • I immediately called him back and got the receptionists. She put me on hold. Within a minute, I was on the phone with the doctor. He listened eagerly and interestedly (to me! a friend of a potential patient) to my friend's situation. He told me to have her register with his office ASAP. He also recommended I Google him to find out more about him. I love MacLaren. I was crying when I got off the phone with him. N is so lucky to have found a doctor who will listen.
    • N registered with the office and had requested lab work faxed to her within the hour! In addition, she had an appointment within the month. The wonderful receptionist also promised to keep her on the cancellation list.
Overall, I think the way the receptionist treats you is indicative of how the doctor will treat you. If the receptionist is unwilling to be forthcoming about the number of adrenal patients the doctor has, its probably because the doctor is unwilling to expose his lack of interest or experience with adrenal patients.

If you call a doctor's office and don't like the way the receptionist treats you, HANG UP and call the next doctor on your list!!!! Interview the doctor's receptionist. Don't schedule an appointment until you get the answers you're looking for.

You would not believe how many endocrinologists have little to NO experience with the adrenal/pituitary problems you have or potentially have. A doctor like this has no need for continuing education in the adrenal field so when he/she treats an oddity like you or me, it's "old school", uneducated or misremembered information from 10, 20 or even 30 years ago. SCARY!

1 comment:

Anonymous said...


You are so right. As a military wife, I have had great endocrinologists and some crappy endocrinolists. Many endo doctors have little or no experience with adrenal patients. I have found that the doctors who ask questions, read what I bring them, and are willing to call other endo doctors are the good ones. Many of my endo doctors who have given me the best care are the ones who have told me that they have never treated an Addison's patient.

Right now, I have a doctor who spends an hour with me minimum each time I go in. He asks questions and runs tests without me having to tell him what to run. He is not afraid to experiment with my medication. Like he says, I can't develop Cushing like symptoms over night.

Now...I am not trashing the University of Utah, but I had a really bad experience there, too (endo clinic only). Bottom line, the endocrinologist told me that he felt that I had been misdiagnosed. He pulled me off of the steroids and almost killed me (cardiac problems). I second what Dusty is saying. Find a doctor that works with you and not against you!