Are you your own heath care advocate?

I’ve been thinking about the various doctors’ I’ve had over the years. It has occurred to me is that I’ve had a lot of poor to mediocre medical care. Is it like this everywhere? How many times have you changed doctors?

Dr. O.B.-my first ob/gyn. She had a great bedside manner, young, attractive. The kind of gyn you never minded going for those annual visits. When I got pregnant, she was patient, kind, and even tempered.

Pop quiz: Which is less stressful, a glucose tolerance test or delivering a 10lb 7oz baby? Apparently Dr. OB thought the glucose tolerance test was more stressful.

When I got pregnant the second time I pushed for glucose tolerance testing in the first trimester, full on gestational diabetes. I was on insulin for the last 12 weeks of the pregnancy. She never suggested that I see someone follow up about my diabetes, so I didn’t.

Dr. Witch–Two years after navigating gestational diabetes and successfully delivering a healthy baby I started experiencing traditional signs of diabetes; exhaustion, frequent urination, and thirst. Having been down this road for a short time I dug out my blood glucose monitor and started testing. I didn’t have a primary care doc at the time so I contacted an endocrinologist directly.

I was right, I did have diabetes, she rattled off the diagnosis over the phone with a list of directions. I was in total shock! It was emotionally wrenching to know that I had been right, but to hear it that way was rough. I didn’t do what she said because I didn’t hear her. I was criticized by her at every appointment, and at one point she gave me a sample box of glucophage and told to take it if I wanted to. She was the doctor, wasn’t she supposed to determine if I took a prescription medication or not? I only saw her for about 6 months.

Dr. Bedside manner—I found the next doctor at a Diabetes Support Meeting. He was new to town and building his practice. He was an internist, very likable, great bedside manner, and friendly staff. So now I had a primary care doc, and help with the diabetes. I controlled my diabetes with diet for several years while in this Doctor’s care, but as LADA goes eventually a good diet wasn’t enough. He started me on the rounds of the typical type 2 drugs. I didn’t complain, he always had plenty of samples and that worked because I was only taking .5 a pill at that time. As the meds became a bigger part of my reality he always had plenty of samples. I asked him to write me a prescription and save the samples for someone that didn’t have insurance. No go, he just another baggy of prescription drugs. It felt a little like I was leaving a drug deal. I also realized that he wasn’t pulling the blood work that he should; only urine samples and finger sticks they could test in the office.

Dr. Beige—after four years I switched to another internist. She listened and did everything that the ADA recommended. She had me get blood work done every 3-4 months and we would spend the visit talking about the results. The LADA proceeded, although to date it was still type 2, and more oral meds where added and tried included metformin, actos, amaryl, and januvia. I begged to go in insulin for over a year, I had been on insulin before and the side effects of the oral drugs where at times debilitating. Finally, at one visit I saw the Physician’s Assistant, and she prescribed Lantus…thank you. That’s when things changed, now every visit was about what I was doing wrong. At one point I had nail fungus in/on a toe nail…she literally looked at it from across the room, please! I started to feel like I was an insurance claim, she saw me as an income source not a patient.

I lost my aunt who was 14 years older than me to hypoglycemia. Ironically the week she died I had two overnight lows in the 40s that woke me from a sound sleep. I made sure I didn’t have lows, and of course my a1C was up the next time. She didn’t want to hear about it, and wrote me a ‘script for an ace inhibitor (which lowers blood pressure). The highest my blood pressure has ever been off meds is 120/70…does she get commission based on the number of prescriptions she writes? That was the last time I set foot in her office.

Dr. Handsome—My babies are getting older and they needed a family practice doctor, not a pedestrian any more. The first visit was just a consultation and he told me that he would be quick to refer me to a specialist, and he didn’t want to see any of my previous records. “Let’s start fresh.” He pulled an a1C, C-peptide, and an antibodies test. I love this man, he called and told me he would like for me to find an endocrinologist to manage my type 1 diabetes.

Dr. Mexico—no, I’m not going to Mexico for medical care, but my new fantastic endo is from there. He constantly apologizes for his stumbles through the English language. He still communicates his desires for good Bg control better than anyone else. He’s talked pump, and CGM from the beginning, and wasn’t surprised with the mediocre healthcare I’ve received until now. He criticizes the ADA recommendations, and told me if you think your low I’d rather you put something in your mouth than drop too low and have a problem. He not only listens to me he learns from me, while I learn from him. He praises Dr. Handsome, and attributes him to saving me from the devastating side effects of the disease. All blood work is done after the appointment, and I receive a handwritten note from him with the results, so the appointment isn’t spent defending the test results.

As I wrap up my journey through the these various Doctor’s offices, It has occurred to me that all three diagnoses occurred because I pushed to find answers. What are you doing, or have you done, to be your own health care advocate?

I will fire a Dr as quick as look at them, they are working for me and taking my money directly by co-pay and indirectly from my insurance. I got in a verbal fight with the hospital cardiologist, lucky my local cardiologist is smarter and actually changed his prep instructions for nuclear stress test based on input from me when I informed him that his office was not diabetic friendly. My GP, I have not found it necessary to go to an endocrinologist, listens to me, discusses with me and dropped my actos at my suggestion, which worked out great. I was having very good control with Janumet and Actos, asked him if we could drop either the Actos or the Januvia in the Janumet to see if I could still maintain good control and I have HbA1c of 5.9. I figure it gives me at least one more step if needed. I pick up a copy of my blood work a week after my appointments, I can usually answer most of my questions on line, but I can drop in early am, or call if I need to. So as you and I have found, if you try to help yourself, you can find a Dr that will become your partner with you to maintain your health.

I have found most doctors know little to nothing about my condition. It irks me that these people have gone to school for almost a decade to learn about the workings of the human body and they don’t know about the glands that maintain it.
I once thought that a doctor could give me all the care I needed and I wouldn’t have to worry about it, but I was so wrong. I have had to educate myself about my body and fight to get the tests and treatments I need to survive. Even my so-called specialist (endocrinologist) seems inept to treat my condition, this is very frustrating to me. I sometimes feel like giving up completely as I fear I will never be healthy again.

I have had Type 1 for 50 years and that in it self is an education. My experience has taught me that if I don’t advocate for my healthcare no one else will. You have to stay on top of whatever the latest treatment is for managing your Diabetes and find a healthcare team who will apply it to you as a patient. Being able to talk with your doctors is important and having them explain the importance of why some treatments are important.

I am the same as others here, that I know my condition the best. I do my own education/research, and then approach my medical team. We talk it out, and usually I walk away satisfied the majority of the time. I actually taught one of my doctors (a breast surgeon) a wee bit too late mind you, about diabetic mastopathy, as he kept on gouging out bits of a breast that had weird growths - you can read about it here (if that link doesn’t work -as a few people have had problems going to my blog links here in Tuville - go directly to where I posted it originally at Diabetes1.org)

HOW FUNNY! I “named” my doctor’s, too. There was Dr. Brainless and Dr. Midlife Crisis. Both were fired. Right now I have a good GYN Chick and Gastro Guy is sitting at B+ right now. I love my endo totally and right now consider him Mr. Thorough which is a complement.

I think alot of people have lived your story. Just keep pushing for the best team you can and YES you are your BEST advocate and the most valuable member of the team. I pushed for a team. I have to have doctors willing to communicate and make decisions. My GP is actually the glue that holds it all together, the endo is basically the final word on meds and bloodwork even though they all order both, and Gastro Guy stays in the loop with his part.

Good Luck - I hope your team continues to help and support you in the manner you deserve! the best.

Oops, just noticed the missing L from the title. That’s what I get for posting this so early in the morning.

Thanks for all the replies. It’s sad to think how much money is being paid for bad health care.

OMG! You could be me! When we moved here in 1983, I had a 7 month old son who seemed to catch every bug there was in this place. THE ONLY doc my doctor at home knew here, I later four out was Dr. Martini…He figured himself to be a counselor too. What a horrible experience. From there we went to Dr. $$$ who would only see us after he found out if we paid for our visits not filed them with medicaid. He lasted one visit and that was it. Then I had a two that were wonderful with both myself and my sons. BUT they didn’t tell me that gestational diabetes might rear it’s head as diabetes later…hmmm, I found the CNP I have now, because she was interning with one of the good men who left our area…we’ve been with her for 20 years…but I wouldn’t say she’s the best, she’s very good…but not an MD. When you live in the sticks, you often have to take what you can get for daily care and go elsewhere for big things. Yes, getting the right match is tough, but we are in control of that situation, and have to learn to fire them, as they work for us, not us for them.