Was there something you wanted to say about dealing with your endocrinologist, Beau?
The magic of social media technology! Seems that Beau had something more important to do. Good topic, most have opinions about endocrinologists.
I posted a question about my Endocrinologist. I hope I can find it. Please be patient. :)
Has anyone trusted their endocrinologist with so much of your care and then find out they are not really doing what they are suppose to do in caring for your Diabetes ?
Can you be more specific? What were your expectations and how did the endo not meet them?
I have been disillusioned in the past about the extent of my endocrinologist's knowledge of dosing insulin for day to day control. With my most frequent contact with an endo being limited to maybe 30 minutes four times per year, it became readily apparent to me that the endo's role is one of merely a distant advisor. Most don't have the time or inclination to really get down into the minutia of the many decisions that we each face every day.
Did you think that the endo was taking care of business but really wasn't? What happened?
To answer your question, my initial expectations were not met in fact. After a while I could see that if I wanted to set some goals and secure better control then it was all up to me. The endo will cheer from the sideline but will not supply me with any "aha" moments or insight that can fuel radical breakthroughs in my care.
That's my job.
I have had rather disappointing experiences with Drs and Endos. In fact, one previous endo was particularly bad, displaying not only callous indifference and apparent incompetence, but actual corruption. We are patients with a chronic condition, we really need to be very selective and critical of the care we are provided. We can't just passively accept mistreatment, we have to stand up for ourselves.
I have been a Diabetic for 44 plus years. I almost went blind, was involved in a near fatal car accident which has basically disabled me for life and since 2007 I have been diagnosed with Celiac Disease. I am very brittle and test my blood at least 6 to 12 times a day. When I relocated to Pittsburgh, Pa in 2007 I was still trying to return to work and be a productive part of society again. My Endocrinologist was excellent and she always gave me great care. She was the one who diagnosed my Celiac and for that I will always be grateful. Before I met her I had spent 4 days in the hospital where I was very sick but they thought I had a bad intestinal virus. Celiac Disease throws off my diabetes and my A1-C has gone from 5.5 to about 11.5 and now I have it around 6.9 to 7.2. I have been on the Insulin Pump for almost 12 years. I see my Endocrinologist 4 times a year for almost 7 years. We had a great relationship going until last Spring. She has a male nurse and before my appointment I received a call and it was him letting me know that they had not received my lab work. He told me that " my little trip into Pittsburgh would be a waste of my time without the lab results." I did not like this guy and after I straighten out the lab, at my appointment I told her of her nurses attitude and that I would not tolerate being spoken to that way. My Endo understood and while at the appointment she was worried about my frame of mind. Since my car accident I have trouble sleeping and she prescribed Celexa which she told me would help me relax. I later found out that Celexa is an Anti-deprssant. I have been on a few anti-depressants since my accident and they never work. This one did and it really surprised me. It did not help me sleep any better but my moods were a bit better. In August of last year I got up one day and I was so depressed I was ready to commit suicide. I called her office but she was not available. Of course I had to deal with her wise ■■■ nurse. I told him I need to speak with her and he just said she was not available. I told him I was ready to jump out of the window and he then put me on hold. He came back and told me he had called her and that I should double my dosage of Celexa and if still felt suicidal than I should call a Hotline. I was so pissed that I said to myself that I was not going down this easy and I ended up going to my Pharmacy and they put me on a program to ween me off of the Celexa. I saw my Endo about 4 months later and she was concerned and in an odd way apologized. I told her that with a Brain Trauma that the chemicals of the brain travel differently and that in the future she should leave the anti-depressants to an Brain Specialist. It was a very good appointment. I saw her again this last March 28th and it was a quick appointment. She did not check my feet or even discuss my lab work and on the way out I realized that we did not even discuss my A1-C. I had asked her female nurse and she told me it was 7.2. Not great but a bit better.
What bothers me is that she is a Specialist, she handles 2 chronic diseases that I have and I feel that she just did not even want to spend the needed time with me. If I am right I will only see her twice this year. What happened to the 4 times a year as was what I am suppose to get. Now I recently had to go to Medicare Advantage and I am wondering if that has something to do with it. I hear that with all the changes in our Healthcare system that Medicare Advantage may get cuts. Is she trying to get me to leave her practice ? Is my care now based on the almighty dollar ? I know this is a lengthy story but I am at a loss. She is the best Doctor I have ever had but now I am having doubts. It just makes me shake my head is total disgust ! Any suggestions would be appreciated.
I am sorry to hear that you have had difficulty with your endo and hope you can work through this to find some answers.
Looking at this from the outside, there are a number of issues that have been tossed together. It might help if you worked on separating them to see if they could be dealt with in their turn.
The first is with the nurse/gatekeeper. Is there another nurse that you could speak with instead, or does this endo only have one nurse?
The second is with using your endo for other concerns beyond your celiac/T1D. We all want to have "one-stop shopping" with our doctors, but as the Celexa experience demonstrates, this might not be the best idea. With the limited amount of time we get to spend with our endos these days, I might be leery of starting a new treatment without a fuller understanding of what is being prescribed. Note, I am NOT laying any blame here, just saying hindsight is 20/20.
The third thing is how to handle emergencies. Talking to your doctor, or in this case, the nurse, is something for AFTER you have called the suicide prevention hotline/911. I know they might be strangers and you want to talk with someone familiar, but when in crisis, call the first responders first!
The fourth thing is dealing with this endo in the future. I am a big, big fan of having your objectives written down on a sheet of paper before you go in for each visit. Even better if you can provide this info to the endo beforehand, so they can understand what YOU want to cover/resolve/have checked, etc. In today's world, doctors are too busy and too often schedule a bunch of 15-minute appointments together. Yes, it can suck, but we have to work with them to create WIN-WIN appointments. We each have our part to play.
My total guess on your last appointment is the doctor is perhaps concerned with your attitude towards her and staff, including legal issues.
Again, having a meeting with her where you calmly list your concerns and decide to develop solutions/responses/apologies/action plans/goals, etc, will work wonders. From that point, you may consider whether or not this endo is going to be able to continue as a key member of your team or not.
My endo basically lets me do all my own care and decisions. She asks me all the time why I need her. My reply is to write scripts and order labs. She just laughs and agrees with me and then tells me she wishes all her patients were like me.
You need to fire this endo. I fired mine recently. To many patients let their doctors bully them. I told my last endo on the day I met him that he was crazy. He was there to write scripts for me until I shopped for a new endo. I found a great one! Next time you talk to that nurse, don't discuss his behavior with with your endo, discuss it with HIM. Don't hold back either. If you don't like how you're being treated by the whole team, then shop around for a new team. It's your money, and you have a choice. :)
I agree and thank you Richthediabetic.
Yes, the one time I saw an endo (in Guatemala when I was dealing with confirming that I was in fact Type 1, not Type 2), she said the same thing. When I showed her Using Insulin by John Walsh she asked if it had been translated into Spanish so she could share it with her patients. (It had not).If I still lived in Guatemala I wouldn't even need a doctor to write my D scripts as you can buy everything over the counter there!
Great answer, Mike.
Beau, you have many issues that combine to make your life difficult. It would be nice if you had some advocate to organize your medical team, but that's not a feature of our system. If there were such a person, I wonder if I would agree with them! When things get complicated, I like to write stuff down. It helps me to think more clearly and keep the same issues from chasing around, circular fashion, in my head. Good luck to you.