I went to my endocrinolist today. Every three months. The nurse asks you all of her questions and asks if you have had any problems. You tell her you have been struggling with many issues. No comment. She just listens. You then wait for your doctor who is making a lot of money with every three month visit. You tell the doctor all of your concerns. She just listens. The doctor makes no adjustments to my pump. Tells me I am probably handling everything ok. We will see on your next visit and your A1C # has come down to 7. Thank you very much I guess I will always have to figure out my own problems and here is your money. Why do I have a doctor? Problem was sugars out of control. Changing sets twice a day. Got a new pump. That was not it. Medtronics sent me new insertion sets, after Googling and reading to figure out what the problem was. Why do I have to do my own research to stay alive??? The new sets (silouette) are so much better than the quick sets. I used the quick sets for two years. All of a sudden they did not work. Why? It took eight doctors, five years to do a heart cath to find out a had a 90% blockage. I could have died. Why did I have to go from doctor to doctor to figure it out? I was told I had vertigo for almost six months before I figured out two glucose machines were registering wrong and I was overdosing on insulin. Not one of my several specialists figured it out. I did!!! What is going on and who else is experiencing this???
I have had many problems with the hospitals were I am at treating me like I am stupid when it comes to dealing with diabetes. The doctors mainly see type 2 patients around here so when they see a type 1 or type 1.5 they are not sure how they need to be treated considering it is a small community. They are going by what they have learned in medical school and most doctor’s do not like to be told they are wrong or have their patient second guess them. I have gotten lucky with my GP who is great with my diabetes. He will listen to me, read the research I find and is willing to let me try just about anything with my treatment. You have to be very pro active in your own car to make sure you are getting adequate care. I would highly recommend you change doctors if you feel like yours isn’t giving you proper care. I have went through 2 other GPS and 3 endos before I finally settled on the doctor I am seeing now.
So sorry to hear about your issues with your many so called “Doctors” I have been very fortunate to find an Endo that is really good. His personality took a little getting use to but he is very good at what he does and seems to pay attention to my numbers and what I say. I really do think that it comes down to finding the right doctor. I had to go through 4 dietitians and 3 dentists before I found ones that I didn’t feel were just reading from a script, not really listening to me and doing shoty work.
Check out those books Judith mentioned and just keep looking for doctors. The good ones are out there, you just have to look a little deeper to find them.
Total population of where I live approximately 35,000. One endo office here. One doctor who only works part time. Office closed at 12:00 each day. I think I might try diabetes work shops at the local hospital. Or keep Googling and reading!!! Reentering the work force soon. Retail! Scarry!!! Nights, weekends, and crazy bloodsugars!!
I am in the same boat, I am currently seeing an internal medicine doctor and not having the attention to getting things more normal as I should. He seems to be just guessing on doses and it is frustrating but I made an appointment today for a Endo only thing is i have to wait till November
So sorry! What frustration, what aggravation.
I’ve been through two endos & one was worse then the other. I live in a small town & they’re the only two within 45 miles. Had my internist, who’s great, refer me to a CDE. Everyone raved about this woman, who’s also a nurse practitioner. Well, she was very nice, caring & someone I’d like to have as a friend. But, she didn’t answer my questions. Told me I was doing great, but no info.
Spoke to an internist doctor friend about diabetes care. There are so many of us that we’ve become the bread & butter of many practices. He said they get frustrated with us. Most of his diabetic patients aren’t compliant with testing, following dietary recommendations. I think doctors lump us all together & really aren’t up to helping with the nuances & variables. They give us pat answers. If this doesn’t work, it’s our fault!
Many dislike proactive, intelligent patients. They don’t want their authority & knowledge being questioned. They want patients who don’t challenge, don’t ask too many questions. They’d prefer sheep. Hey, if we ask questions they can’t answer or fix, they feel inadequate, which many are. Add to this how many patients they see & we get substandard care for an incredibly complex health issue.
Diabetes is all about self-care, but it sure would be nice to have professional help. I’ve learned more from Tu Diabetes & doing my own reseach than I have from doctors.
I fired my endo after 15 years of service. I felt she was no longer paying attention to me. I spent the next year and a half looking for a new endo who would listen to what I was saying. One of them wrote a book on diabetes - while in the appt. with him he was totally trying to sell me the book, forget getting any help from him. After 44 years with this dis-ease I could have written the book. I understand the frustrations completely. “How Doctors Think” did help me some. If nothing else it pointed out to me that it wasn’t my requests that were wrong, it was how the doctors interpreted what I was saying. I live in a large metro area with multiple endo’s available. I’m now working with my 4th attempt at finding a decent one. They all seem to function the same way. And as Gerri implies - doctors HATE, HATE, HATE an educated patient. I use my current endo for prescription writing only. All other issues related to my diabetes I seek the council of an acupuncturist who has helped me resolve some long standing issues in dealing with my diabetes. I told the endo that I would never put him on a pedestal and that I would question his decisions. He didn’t like hearing that and still cringes when I talk about working with the acupuncturist but he certainly doesn’t have much to say when my A1c comes in below 6 and there are no complications to report.
Hi Cathy, gosh do I sympatize with you !!! I am so sorry to hear about all of your issues
Feeling very frustrated, like you… I take my daughter, who is 7 to the pediatric endo… they are telling me to only give 3 shots a day and monitor levels… Well, It didn’t take me long to figure out that 3 injections a day was not going to get it for her… she eats and grazes all day which requires constant evaluation and attention –
At first they wanted me to attend dietician/group meetings on carb control… well, I was reminded how many carbs are in a baby carrot…C’mon… I have been “chunky” for my entire life… I know how to count carbs… I needed some advice on how to keep my daughter’s BG levels under contol…
I am not sure if the Dr.'s think that patients do not have the mental capacity to take control of their heallth or they are just so preoccupied with “moving right along” that some people’s issues are overlooked … so I’ve learned to be assertive… very assertive at the Dr.'s office… If I have a question…the Dr. is not getting out of the room until I get an answer that I am satified with… I have to admit that I don’t always make friends with medical personnel this way but I get an answer…
And once the Dr. told me… I don’t know why you ask questions about how to contol BG’s – your daughter’s A1C is 6.8 – that is (in his opinion) excellent for a child her age –
So probably when your A1C comes back at 7.0 – they think you are not doing a bad job or it would be much higher !!!
I don’t think anyone really knows how to deal with MD’s but really practice the assertion … even take in a list of questions if you need to … oh…and stand up in front of the door if all else fails !!! LOL !!!
Good luck to you…
I learned a long, long time ago that Doctors had GPA’s in school, too. They are not all equal and it is up to me to find the ONE who is capable, competent and interested.
Keep on hunting
Dana, I can relate to the dietician meetings you attended. I was instructed to attend diabetic education classes when I was discharged from the hospital. I figured, why not? I’m new to this & I’ll learn something, anything. Ha! It just another $ making service of the hospital. There were six sessions. After two, I was outta there. Before the first meeting, they gave me a book. They read the book to us, chapter by chapter. This book was so simplistic a fourth grader could have read it in two hours & understood it. The second half of one session was the dietician. She arrived with plastic boxes filled with fake plastic food models to teach carb counting. I think we all know what a dinner roll looks like without a visual aid. When I dared to ask about low carb meals, she glared at me.
The nurse they assigned me (I don’t know if she was a CDE) wouldn’t address any of my concerns. Every question I asked was met with “Don’t worry about that. We’ll get to that later.” Later, there was no later. I never went back to her either.
The people who survive life threatening illnesses in hospitals are those who question every pill & test they’re told to take, question their doctors & refuse to be submissive to the medical model. Hospitals are really jails for sick people.
Oh yeah - I agree that docs hate an educated patient. We somehow are a threat to them. Yikes.
I have had T1DM for 34 years, but my insurance will only pay for one endo visit per year since I do not pump and do not have an AlC over 8. My other 3 are with an internist.
He admits that he doesn’t know a lot about day-to-day db management or pattern control, but he is always willing to listen to me when I ask for some new or different test. For example, a couple of people have talked about having vitamin D levels checked. I asked him, and he ordered the test.
Yes, it was obnoxious that I had to ask, but he is always very cooperative and treats me like I know something. He doesn’t talk down to me.
I think the purpose of the doc is to order labs and write prescriptions and interface with other specialists we may be seeing. Fortunately, all of my docs are in the same clinic system so everybody can look at everything and all my meds are listed.
We have to be our own best advocates. No, it’s not fair. Health care costs are much too high for us not to get optimal care, but in most cases it doesn’t happen unless we fight for it.
Did you have angioplasty for your blocked artery? Is it okay now?
My doctor asks me why I need him because I can treat my diabetes myself. I always tell him well I just need you to sign the scripts.
My relationship with my endo is not great. I was diagnosed here in South Korea… He gave me some insulin, told me blood sugar targets, then had a nurse tell me how to inject with a pen and what low blood sugar is like. Nothing else. I had to learn how to use test strips in the store where i bought my meter. I was given no dietary guidelines except no coffee and only 1 drink a week. They didn’t even explain the relationship between carbohydrates and blood sugar-- I later learned they don’t count in Korea because the food makes it too difficult. I walked out of his office entirely confused. It’s very fortunate I was able to find lots of good information online.
On a later visit I pressed him for information, but man, it’s a wonder I didn’t end up in the hospital in the first couple weeks, I was injecting twice as much insulin as I do now (I lowered my dose myself of course) and treating for lows constantly. I’m looking forward to finding a good doctor when I get home to America.
I have been with the same endo for 4, almost 5 years now. He’s always been pretty good about listening to me and helping me out. But the last appointment I left frustrated, mad, and feeling like I’d just wasted a whole day (my endo is an hour away and the wait in the office is usually a couple of hours).
I was concerned that his “in office” finger prick A1c wasn’t right. It said I was 6.3, but according to my records from my CGMS and all my testing, it should have been higher.
He laughed at me and told me I was, and I quote, “obsessive”.
He made no adjustments to my ratios or basal rates and then he basically blew it off when I mentioned my feet had been bothering me some.
I was NOT happy.
But what to do? I mean, I want to look for another endo, but he’s the only one in that town and the next closest town there is also only 1. After that I am looking at a 2 to 2 and a half hour drive.
I just want someone who will listen to me. I’ve been at this a long time and I need some back up sometimes.
I understand the frustrations.
I think all doctors and others who are dealing with diabetes have to join our community,so we all can improve our service and care
Wow, that’s really crappy! I haven’t run into that problem yet. Actually my first doctor after I was diagnosed in January was just a general internal medicine doctor, but had gone to great lengths to get himself more training on handling diabetes and other issues. He was so nice and understanding. While I was in the hospital after diagnoses, he had to leave the second day for a conference in DC. He called every morning afternoon and night to get an update and make adjustments, and gave me his personal cell number, and his wife’s in case he was in a seminar so she could pull him out! He was so incredibly encouraging and really got me started managing my diabetes right. That was when I was in school at Auburn and now I’m back home in FL and we still keep in touch.
My new doctor isn’t quite as invested, but still super nice and really helpful when I need her. She’s very enthusiastic about everything so it keeps me pumped.
I really feel like the attitude your doctor has affects your control and your drive to work for it. It’s just so encouraging to have someone who really seems to care. If I were you, I would look into getting a new doctor, someone who can really help you do your best. When I went into the hospital, I had an a1c of almost 9. Three months later it was down to 5.7 and now it’s 5.5. I give a lot of credit to my doctors for really wanting me to do well.
Can you afford to get your daughter on an insulin pump? Do you have good insurance and will it help to pay for it? I am fortunate in that my husband works for UPS. We have very good insurance and I finally gave into the doctors nagging about getting a pump. I was a diabetic for 31 years before I gave in. I did not want something connected to me all the time. It has changed my life. I feel like a normal person. A1C’s are better. I feel good. I din’t know anything about them and didn’t care. I cannot imagine how difficult it would be to deal with my child being a diabetic. I go by how I feel to know if I’m high or low, besides my meter. My heart goes out to those out there that don’t have good insurance.
I have lived through a similar situation myself. I eventually found a great doctor who was helpful. I have had diabetes for 28 years and have found that most of the time i am the only one who really cares about the end result. I am my own advocate when i go to the doctors and i don’t take no for an answer. I spend a large amount of time researching what ever issue i might have.
My mother passed in March of this year at 52 years old. She was a type 1 since age 36 and took very good care of herself. She got sick last December and had some unusual blood work. The doctors assumed she was just having kidney failure because she was a diabetic. I know my mother told the hospital that she had some known heart issues but they ignored her. Several months later when they were trying to treat her kidney failure nothing was helping thats when they discovered that her kidney issue was actually caused by a heart issue that was missed. At this time her kidneys were shot and they could not operate with the kidneys in bad shape. My mother had rheumatic fever as a child and was not treated. It caused her heart valves to fail. She died shortly after they found out she had the heart issue. I have learned a great deal from this situation to be persistent and find someone who will listen. I know my doctors want to blame everything on being a diabetic instead of finding out what the actual problem is.
It is really another sad story.I always teach my young patients to speak loud and be persistent to get their rights and to be heard. ( with all these stories I feel ashamed on behalf of medical people)
I’m fortunate to have a pro-active endo who takes the time to listen, actually writes stuff down when I talk to her, discusses adjustments and doesn’t try to rush me out of the office. My two cents:
Fire your doctor.
If you can’t fire your doctor, ask the doctor to refer to you a CDE and tell him you want the referral because he’s not answering your questions.
If the CDE doesn’t answer your questions, fire him/her and get a new one.
There is a certain level of self-management we should all do, but if it was ALL self-management, why would we need a doctor at all.
One other thing you might consider, and I don’t mean to insult or blame you, but consider how you approach the doctor and nurse with your questions. Are you being timid and reserved or are you stating your case in a confident voice and following up with a question. There’s a difference between saying “I notice by BG’s are high in the morning” and asking “What should I do to keep my BG’s down in the morning?” The first one doesn’t demand any response beyond “Mmm-hmm.”
When you are giving information to the nurse or doctor and they are just nodding their head - ask them as forthrightly as you can - “Why aren’t you writing this down?”
Speaking of which, YOU should also write down your questions, bring them with you, ASK THEM OUTLOUD, then give the list to the doctor to put in your chart.
If you’re not getting a response - Fire your doctor!! The doctor works for you, you don’t work for him and you’re not his property.
You may be in a situation where you can’t fire your doctor due to geography, insurance, lack of specialists, whatever. Don’t let that stop you from demanding the best care. You can demand good care and still be polite. Just be straight up, speak confidently, tell the doctor when he’s not being responsive or when you think he’s putting you off. When he says “don’t worry about it” say “But I AM worried about it because . . . Explain to me why I shouldn’t be worried.” (or you could say - “Y’know, doc. My mechanic explains what’s going on with my car more thoroughly than you explain what’s going on with my body.” but that wouldn’t be really polite. It sure would be fun to say someday, like the day you fire him.)
So, for what it’s worth, thats advice from a guy who has never had to use it because he’s got a great endo.
Good luck. Demand the best.