My father, a very wise 80 year old gentleman, tells me I shouldn’t get so bent out of shape about stuff, but dang it, this is my LIFE that is getting played with. I am tired of going to the endo and getting the third degree about my diet, being told I am lying about the documentation of what I eat (when I am not!), and told to exercise more “because I obviously don’t!” I am a chubby type 1 who started at 272 pounds and has dropped 62 of that in my first year as a diabetic. My last visit, the doctor wrote as my diagnosis: Type 1 AND Type 2, just because I am 47 and overweight. It is insulting! I am actually extremely insulin sensitive. I exercise as much as I can and I am very scrupulous about my diet. She is denying me insulin because she thinks I can control it all by losing weight and with diet and exercise. I keep telling her: I am type 1! It CANNOT be controlled this way, even with maximum doses of oral meds. I am exhausted from trying to convince her, and scared because I am consistently above 200 and starting to get complications. Is it normal to take four naps a day? When my sugar gets high I can’t exercise, and I am hungry all the time. If I eat what the dietician recommends, my sugar is off the scale. I have already changed doctors once. Is there a SINGLE endo out there who understands what diabetes feels like and gives a damn? I don’t really want it, but I am desperate for insulin. I know I can control this with that tool, with only minimal supervision. I am a registered nurse. I want a chance to do something about this before she ruins my kidneys or eyes!!! Is is normal for a doctor to drag their feet on starting insulin?
She is denying you insulin??? I mean, if you are Type 1, you can’t live without that… not for long, anyway. I think it’s time to report that Endo to the medical board, and find a new one…
When were you diagnosed? That’s the first question I have for you.
Secondly - I went through 3 Endos and 4 primaries before I found ones that I could work with and that took my insurance when I got insurance.
Thirdly - it’s YOUR condition and you have to take the attitude that YOU are the CUSTOMER. Now what does that mean? It means that if you are going to get true customer service from your medical care professionals then you have to be current on what is accurate and what is fluff in terms of your diabetes. So if you aren’t happy with the “Customer Service” you are receiving then it’s time to find a doctor or doctors who will give you that service. CAVEAT - if you are certain that you know your diabetes then it’s fine; if not then be careful. The old adage that a doctor who treats him/herself has a fool for a patient applies even more so to us as diabetics. So many of us are so desperate to not have to deal with our diabetes that we jump at every possible cure on the internet and every old wives tale out there. You say you are an RN. That’s great but please be advised that many medical professionals are actually their own worst enemies because, while knowledgeable, they over analyze themselves. My first endo would only yell at me about getting gastric bypass surgery to the point where I asked him once how much of a commission he got from the surgeons. I changed endos after that visit. My second endo kept upping my insulin because of my diabetes and my A1c’s kept climbing and climbing.
My current endo is phenomenal. I’m pretty certain that he is out of his residency sometime in the last couple of years but at my first meeting he LISTENED to me instead of preaching at me - WOW how novel. Then he asked me a bunch of questions about what I had done and when we were finished he explained all about U-500 insulin - the pros and cons and if I would consider taking it. He wanted me to think about it and come back in a week. I did and I have been taking it for over a year now. Within 6 months my A1c’s came way down (my last was 6.4) and I’m a happy camper. The point is that he and the other endo in his office specialize in diabetes and takes the time to go to conferences, etc even with a full schedule. Period. We have another endo in our area who is a generalist and has been up here for years. He’s good but not for diabetics. For the longest time he had a Nurse Practitioner working for him and SHE was the diabetic specialist who kept up as best as she could with everything that is new.
As for finding an endo who understands diabetes trust me - you should be able to find an endo who specializes in diabetes (also known as a diabetologist) in Philadelphia, Camden or Trenton - all of which are accessible by SEPTA from where you are.
Two other things I would recommend:
- Take the time to visit http://www.joslin.org and explore their site. Their main campus is in Boston and you might want to go there for their diabetes boot camp. You’ll leave with your diabetes under control along with any scrips or recommendations you might need. They are really really good. They have affiliate programs around the country (including 3 in Pennsylvania.) However in Boston you might also consider taking some of their professional training. This would make you extremely valuable to an endo (or even a regular doctor) as a nurse as well and would count towards your CEU’s.
- Here’s a link to diabetologists in Pennsylvania: http://www.ucomparehealthcare.com/drs/pennsylvania/diabetes_specialist/
Hope this helps.
Doctors provide you a service. You pay them (either through your insurance premiums or out of pocket), so if they aren’t working out for you, you have every right to just say “listen, you’re just not helping me out” and try out another doctor. Also, it’s ultimately your disease, and your body, so you always have the right to do what you think is best. I have TOTALLY left an endo’s practice before because they were awful and ridiculous. Even if you are a Type 2, and you’re not getting the control you want with meds & diet, what’s the harm in giving you insulin if it will give you better control and more freedom? It sounds like you need a doctor who’s willing to work with you more.
Really helpful info! In fact all of it is. I am just frustrated. It takes 6-8 weeks to get a new Endo appointment, so if you get a ‘lemon’, it takes forever to start over! Believe it or not, diabetic boot camp sounds like heaven! I would like to find out about becoming a certified diabetic educator, too, but it is very difficult to understand exactly how to get certified. I should say that I have moved to Sterling, VA near washington, DC. There are only two endos here I know of, and one had so many unhappy client comments on the website that I don’t even want to TRY them! What is it with endos? I have worked with several and they all seem to be ‘personality challenged’! I was only diagnosed Oct 1st of last year (2009). I want to get this under control and get on with my life. The worry just eats at me. ;(
How do you know that your are Type 1? Just asking because I don’t see indication of how you were diagnosed or what tests were used to clarify your type.
I have no background to advise you but here is my response. I think you should be commended for losing 62 pounds in one year. As they say, you didn’t put it on in one year and it won’t all come off in one year. Give yourself time for the whole weight loss phase to play out. You sound like you are working on it. You may want to revisit the dietitian and talk with her about the number of calories for a reasonable weight loss plan. And as others know better than me, revisit food types that are filling and lasting and yet within a diabetes plan.
How has your A1c changed over the year? If it is dropping then maybe your plan is working. I am not trying to debate here, just making suggestions that may not apply since I don’t have all the info needed to respond sensibly. To play devil’s advocate further, I would try to have calm discussion with the endo and try to get her perspective on this. You said she wrote “T1 and T2” but did you have a discussion about your concerns about her diagnosis? Take a deep breath and ask her about it next time. Yes, I know you are in charge of yourself but if we pay these docs to help us take care of ourselves, I think we have to approach it as a team thing. (I was an RN for a long time and was pretty much anti-god (anti-doc) so I must have mellowed in my old age. I haven’t helped with your concerns but I do feel for your frustrations. I just know how hard it is to find a new doc unless you live somewhere with lots of endos!
OK - a few observations:
- if you have a GOOD primary and both of you feel you are out of control that 6-8 weeks can drop down to 1 to 2 weeks if your primary makes the phone call. I do understand your frustration. Most people just accept whatever doctors they are dealt in life and that’s not too good when the doctor treats himself as G-d. However finding a doctor and endo that you can work with on your care; one that understands that you will question things because you want to understand and not just to be a PITA is difficult. I think that many endos, like dentists burn out because so many patients don’t take care of themselves. A friend of mine who is a nurse told me the tale about when she was working in the ER. One day on the way home she saw a diabetic patient coming out of Dunkin’ Donuts and waddling (not walking) down the street with the largest ice coffee with whipped cream and a bag of donuts and eating and drinking. Needless to say she was in the ER next day. If this woman were your patient wouldn’t you be frustrated? That is part of the problem. Too many diabetics just don’t take care of themselves and it makes it difficult across the board for those of us that want to take care of ourselves and for the endos out there. And there is a HUGE shortage of qualified endos.
- Diabetologists in your area:
34 in D.C.: http://www.ucomparehealthcare.com/drs/washington_dc/diabetes_specialist/Washington.html
VA: Here is a link to all diabetologists in Virginia. You click on the link for the towns near you and it will bring you to a list of the diabetologists specializing in that town: (There are a few in the towns near you) http://www.ucomparehealthcare.com/drs/virginia/diabetes_specialist/
MD: Here’s the link for Maryland. There are 6 in Silver Spring alone. I know the area and once you get on the beltway it’s not that bad if you time your appointments correctly. http://www.ucomparehealthcare.com/drs/maryland/diabetes_specialist/
- Getting your C.D.E. - It’s not easy but here you are:
Don’t forget that the American Diabetes Association is right down the road from you in Arlington VA as well if you have trouble getting into a CDE program.
- There are many boot camps - however, again, I would highly recommend the one at Joslin in Boston. Phone them and find out the costs, etc. and to see if your insurance will cover it.
Have you considered looking for another endo? It doesnt really matter if you have changed your doctor once before… You are deserving of the best possible medical care. The goal in this situation is to find out your real diagnosis (T1 or T2 not both or LADA). So that you can determine what is the best care and management you need the soonest time possible. Have you had tests made like C peptide and antibody test done?
I believe you. It’s ok to change doctors twice, three times and more!
As an RN, you’re being much too lenient with a poor specimen of a doctor.
I believe Peter has given you great advice.
Get a younger Endo who is board certified.
Interview him/her to ensure s/he’s on the same track as you are. Prevention oriented. Save-the-pancreas oriented.
Take with you your detailed record of testings, exact food with grams intake, points at which you exercised.
Ensure your paper has the fasting as well as post meal (one hour and two hour) tests.
Prevention of complications comes through keeping blood sugars below 140.
Take some online CDE courses. They’re available to you as an RN. This gives you even more power to speak with Endos as a colleague.
Practice some yoga breathing exercises while you’re angry.
And my best, sympathetic wishes to you!
I am actually extremely insulin sensitive. I exercise as much as I can and I am very scrupulous about my diet. She is denying me insulin because she thinks I can control it all by losing weight and with diet and exercise. I keep telling her: I am type 1.
Just responding to your statement above.
How do you know you are extremely insulin sensitive if you are not currently taking insulin? And another questions others have asked, how were you diagnosed as Type I and 2? A type 1 typically cannot survive without using exogenous insulin. How often do you check your blood sugars, and what kind of diet do you eat?
Congratulatons on the 62 pound weight loss, that is great after one year. When I was initially diagnosed, due to my very low c-peptide results, I was put on insulin immediately, and this was by my primary care physician.
Long story! I have anaphylactic insulin allergies, something that is very rare. My endo sees that my c-peptide level is normal, and that is why she thinks I am Type 2. However, the allergist thinks that due to these rare allergies, my antibodies are destroying the insulin I make as fast as it is produced. Because I am constantly using the antibodies up destroying my own insulin, I don’t have the symptoms of an allergic reaction, My pancreas is ALSO being destroyed (Gad65 antibodies 20.2 and climbing). When the allergist tested me for insulin allergies, just a small amount way over-dosed me and had me in the hospital on a concentrated glucose drip for three days. I meant to ask…do any of you folks taking insulin get an intense burning sensation from it? It feels like acid being injected. I was not sure if this was due to my allergies, or if insulin just HURTS. None of my diabetic patients ever mentioned it hurting so badly.
aw man, I feel bad for ya. I went through 4 crappy years with doctors who knew nothing. I really have a bad taste in my mouth concerning docs. I know there are some good ones out there. Somewhere. I just wasn’t in touch with them. I feel your pain. Awesome job losing a bunch of weight. I applaud you for that. And I’m with the others, find a new doc, a new endo, and the right CDE. I’m a huge believer in my educator. They tell me what to do and then I tell my docs. I know it sucks going through the process, but that’s short term. You’re going to live for a long time and you need the right docs. Just think how well you’ve done with crappy advice and treatment. Now think how awesome you’re gonna feel when things are going the way they should, with proper care and treatment, you’re gonna rock it! Keep your chin up.
Run, don’t walk to find a new endo/diabetologist. Any endo that does not try to have you lower your A1c is not worth their salt or in this case sugar. There must be another doc who will help you. Being a nurse, if you work at a hospital, ask around. I am curious, if you have this reaction to insulin, how can you take it ? Also, kudos for losing all that weight, we know, even if the doc doesn’t, how hard you worked to do it.
Time for a new Endo! Yes, they are out there, who get it. My endo has Type I, so she totally gets it. I would seek out others in your area whom can make suggestions, if possible? So sorry to hear about this. How terribly frustrating!! hang in there. You are doing the right thing by knowing this doctor is not right for you, simply by not listening!
Has she even bothered to check you for islet cell antibodies? Has she checked your blood for C-Peptide levels to determine whether or not you still produce insulin on your own? If you have antibodies, and low or no C-Peptides, the Type-1 diagnosis is a slam-dunk ( I am not a doctor though ). If you have normal C-Peptide levels and no antibodies, then I could understand her desire to hold the line on insulin. Just some thoughts. Hope you can get her to open up the discussion. Since you have medical training, it’s a shame she does not partner with you more in your treatment. You obviously understand the beast you are up against in dealing with diabetes!
Best of luck!
i know how you feel. my endo was insistant that i was lying about taking my shots, and about what i ate. i’ve been a type one for almost 4 years now. my endo still doesnt belive me when i tell her things, like the time i had an allergic reaction to levemir(which was why my sugars were so high) and she just told me i was lying about taking my shots, or how recently i’ve gained almost 30lbs in a month, and dont knwo why! i rewuested to change my insulin and the doctor said she would just write me a trial perscription, even though she was sure it was just my diet!! in a week i’ve already lost 9lbs. endo’s dont knjow everything. its your body you should be able to make the decision about your insulin. no one should ever be DENIED insulin thats for sure!!!
Its a pain isnt it. If you are truly Type 1 you cannot survive without insulin. It is possible, common unfortunately, to be Type 1 and Type 2. If you think you are Type 1 and they say your Type 2, check your urine for ketones. If they are there in a high amount after no insulin for a little while. You may be Type 1. Ask for a C-Peptide, that will tell if you are producing any insulin.
Type 2 is about insulin resistace. Your body is producing insulin, sometime alot, but you cells are resistant. Why? Who knows? The average persone needs about 0.5 units/kg of bodyweight. When you start getting to around 0.8 units/kg of body weight then you may have Type 2 as well.
If your body is really sensitive to isulin, the may be right in wanting to hold you off. Would be terrible to be treating a patient with a blood sugar of 20 and make a mistake.
You are overweight, like me. Dont be insulted, it is what it is. Walk up and down the stairs on the days your at work and you dont have time to workout. If yu dont like your doctor, go get another one.
Yes, it burns me too, especially when cold and in bigger bolus amounts.
Get out of there and get out now.
Endos are supposed to work FOR you. If they aren’t working FOR you, then they have to at least work WITH you.
I’m in the process of finding a new Endo myself because mine has stopped listening to me. It’s not to say that they shouldn’t reign in our hopes when it’s necessary, but if I’m adamant about trying something, my Endo needs to be able to show me why I can’t do it (if I can’t) or atleast let me TRY something.
Endo / Diabetic is supposed to be a partnership where YOU are the boss. The Endo should be someone who SUPPORTS you and who is the GATEWAY to the meds. If your Endo is not willing to work with you- FIRE HER!
I mean it.
Stupid Endos really ■■■■ me off.
Yup. I’m Type 1 (normal weight) but also insulin resistant.
It’s called “Double Diabetic” and actually isn’t always related to obesity. I’m actually tall and thin, but I’ve got Double Diabetes too.
I’m on the opposite end. I’ve had insulin resistance for about 5 years and it slowly starting to take it’s toll on my body. I’m asking my Endo for Metformin (to help with the resistance) and he is bucking at the idea.
"What?! Insulin SHOTS AND PILLS??? Never!"
Uh… it happens… and it works in most cases.
We should make our own special little club.