when you where diagnosed with diabetes was your docter very helpfull.in my sons case no…your son got diabetes he said heres a leaflet about it.and you will get a letter in the post from the clinic…off we went home no medcation nothing…well at that time i did not no what diabetes was…later on george collapsed so i just got him in the car and took him straight to hospital the staff where great very helpfull.we put in a complaint and never went back to see that docter again…i’m still learning about diabetes and hoping to learn a lot more from your great website.take care …janet xx
Hello there Janet. Unfortunately in my case, he wasn’t. As a matter of fact, my experience during the initial days of confinement was horrible, a disaster, to a point sometimes its hilarious.
I ignored the obvious signes of diabetes so, I was already in the verge of coma when I was brought to the emergency room. Due to the urgency, we were not able to choose a hospital anymore and proceeded to the closest private hospital. At the emergency room, I was immediately taken in and accomodated (thank God). My husband tells the emergency room doctor of the signs and symptoms I was having…they took all the test possible…and finally after about a gazillion lab exams and passing out about 2 to 3 times…(the fact that my husband was freaking out too!) in TWO hours, they found and said my blood sugar was high! Whew! I was confined for 2 days…the worst days of my life! The private rooms were miserable…and the hospital food was simpy unbelievable. They were feeding me, chinese noodles for breakfast, beef stew for lunch and some fried pork with fries for sides at dinner! Not to mention the pastries and cookies for dessert and a bottle of juice with 35 grams of sugar per bottle. I think the hospital is going to kill me. The doctor forgot to inform the nurse that Im diabetic. Unbeleivable! The fact that he scared the crap out of me by talking about death, amputation and going blind. I was so stressed and scared. I have limited knowledge then of diabetes. My family moved me to another hospital the soonest time Im strong enough. Thank God. And yes, I have a far better doctor now.
My primary care physician was useless. He gave me nothing but a couple of prescriptions for oral meds (He incorrectly diagnosed me as type 2). No pamphlets, no recommendations or referrals (I found a wonderful 3-day diabetes education program provided free of charge by a local pharmacy). Even refused to refer me to an endocrinologist after his oral meds proved ineffective. So I went out-of-network to a local endocrinologist in 1998. (Still with him – very pleased!)
And these days the internet is a great tool for information. (But you must check anything you read very carefully and verify with other sources if necessary!)
I think our physicians are related or at least went to the same school. But in their minor (and I mean VERY minor defense) they get about 2 hours of diabetic training…and unless it touches them personally, they know VERY little.
Best to be your own advocate, and you are right, check and double check any information you get with a medical person whom you can trust and works in your best interest.
Oh my no. But it was not realy his fault. I was dx’d in '74 and lived in a very small town in Minnesota. We did have a hospital, but it was staffed by 5 family practice guys and they were all old. I was in the hospital for 5 days, and each morning they kept increasing my single dose of NPH until my fasting the next morning was in range. I was sent home with a spool of urine testing tape and a little chart to record the results of how intense the color green was. I remember him saying, “now, Kathy, if you want to have a 7-Up once or twice a year, don’t worry about it”.
7-UP - holy sh-t I don’t even think they make that any more.
I could go on and on about the nurses and the dietician during that stay, but I’ll spare the details. The only things I can say is thea the am very glad things hae improved, and that I’m still here to see that!
I understand that they don’t get a lot of training in diabetes. What was so frustrating about this was that (1) he couldn’t admit that the oral meds he was prescribing didn’t work, and (2) he refused to give me a referral (this would have reduced my out-of-pocket expense) to an endocrinologist.
I’d much rather have someone tell they didn’t know something or have an answer than for them to ignore reality and try to proceed down the wrong path with my life!
… sounds like a nightmare! I was diagnosed in 1998 at age 52. I’m sure glad our society (and medical practitioners in particular) have become more knowledgeable, and that technology has improved so significantly!
Janet, you brought back oh, so much. I diagnosed my daughter’s diabetes in 1973. Took her to a well known children’s hospital and an endocrinologist there. When they told her it was ok to have this n that with sugar in it and let her think she could eat as she wanted, I took her to another, urban, major university hospital, an endocrinologist. When they told her it was ok to have this n that with sugar in it and absolutely minimal help, I just about gave up, screamed, yelled, etc. Yup. I needed my daughter to scream and yell for appropriate teaching, too. She was way too ashamed of her mother asking for more. So teachers never took responsibility. Hold them to it. Hold your son to the best possible treatment knowledge there is out there.
Ya gotta get with a group that will give your son the facts, research-based facts, get your son with others his age with diabetes, and consider all the options - monitoring and pumping - after test, test, test. Read all the stuff in Blood sugar 101, Bernstein, Wikipedia, and this site. Glad you’re here. We’re all still learning, believe me!
oh my dear flipping goodness my first doctor was awful, and the worst part is that he was a pediatric endocrinologist.
i will start this by saying that i love the joslin… my children all go there and i adore their doctor. my father and brother were both diabetics, so i knew that symptoms. i could not get any one else to recognize them. i am a little over six feet tall and i weight 190 pounds right now. i feel like i could loose a little on my frame, but i am not much over weight. at the time of dx i was 126 pounds, drinking over a gallon and a half ever day, could hardly move, urinating every five minutes… classic. i smelled like ketones. the emergency room at boston city was trauma oriented, they missed it, sent me home and told me to get some rest. i read about a study for class one relatives of type one diabetics that the joslin was putting on. they gave me a clean bill of health (because i was so far past that i had no antibodies left. i left wondering if i had aids or something (it was the late 80’s, aids was big). i had a friend that was going through his residency at boston city and i went to see him. he asked me a few questions and said “if you are not a diabetic, i’m a bear in the woods!” he had a few friends at cape cod hospital, so he got me in to the er there. they said i had less than a day to live by the time i got in. i slipped into a coma in the waiting room. this whole process took a month. the doctor that was my first endo was a joke. he was a condescending man with a chip on his shoulder. he said that i obviously just didn’t care so he was going to put me on one shot of 70/30 and hoped for the best. no education. i finally found a very nice endo on the cape. it is the first time that i had a doctor that was younger than i, but i certainly do respect this woman. she is really responsible for getting me out of the mire and getting me interested in the pump… that took years!
When I was initially diagnosed the doc gave me no info about diabetes, diet, excercise or anything other than take this pill once a day. He was awful.
I’m in the UK too - a Southerner mind ;-), but one half of my family came from Northumberland/Tyne & Wear, so I’m an honorary Northerner!
It was such a long time ago since I was diagnosed (nearly 30 years) and I was 12 at the time. I don’t remember the consultant at the hospital giving much in the way of information. All my training at diagnosis came from the specialist nurse and also my Mum, who’s been diabetic since the early 70s. I think this is where you’ll get the training and advice you need - not so much from the consultants but from the team of specialist nurses. When I did the week-long DAFNE (Dose Adjustment for Normal Eating) course a few years ago, it was run by a dietitian and a specialist nurse. A consultant popped in one of twice for a couple of sessions, but apart from that everything came from these two women. I’d recommend that you seek advice from the specialist nurses. That’s not to say that the consultants are not important because they are when it comes to analysing blood test results, your blood glucose readings and medication. But the day-to-day management is mostly handled by the specialist nurses and dietitians.
As far as GPs are concerned, and I’m going to stick my neck out here and risk offending any GPs who might read this, but over my three decades of T1, I have noticed that I probably know more about diabetes than the average GP who does not have a particular interest in diabetes. I’ve often found GP advice related to diabetes quite limited or perhaps because I have so much knowledge and experience of this condition, I probably put them off.
If I were you, I’d make the specialist nurses your first port of call if you need quick advice over the phone or by e-mail.
I was diagnosed in 95 when I was 10. I had it for a year before but I refused to get tested. My grandmother had died the year before from complications because she wouldn’t take care of herself so even the idea of diabetes scared the heck out of me. I went into the dr’s office for a sore throat and saw an associate of my dr (hence this started my fear for seeing any other dr than my own). My parents told him that I was showing the signs of high blood sugar,ie the extreme thirst and frequent bathroom trips that had gotten worse since I got sick. He told them I just had strep throat and sent me on my way. Lo and behold not 24 hrs later my mom found me unconscious in my room and I was in a coma in dka for 3 days. They wouldn’t even tell me how high my sugar was. The hospital itself was very good and my dr was in my room all the time checking on me (the associate got canned). The nutritionist however was not… They showed my mom and I the pamphlets and went on a speal about how I couldn’t have any sugar at all and that i had to stick to a strict pretty bland diet.my mom went home practically in tears and got rid of half the food in the house. The week after I was released I was referred to a wonderful dr (Dr. Heymann,may he rest in peace) and his nutritionist and she had updated info becaus e she explained all the limitations and things were ok but only in moderation. So far I have only been in the hospital twice since then and that was due to food poisoning which caused caused me to run really high and my pump kinking without me realizing it. I started with the minimed paradigm pump, then on to the deltec cozmo, and now the omnipod. The omnipod is a lifesaver!
My primary care doc was on vacation. I didn’t realize how sick I was, as in I should have gone to the emergency room (when finally tested, my blood sugar was 619 mg/dl), and went to the doctor’s office without an appointment and was seen by a nurse. When the assistant took me back to the office, she asked me about symptoms. I said I had the symptoms of diabetes. The nurse I saw knew I had Type 1 diabetes based on the urine in glucose and appearance and symptoms. She was great. But then I was hospitalized due to the very high BG, and the horror began. Even though the nurse knew I was Type 1, the doctor covering for my GP said I had Type 2 (I was 35 years old), and the errors began. In the hospital I was stablized with IV insulin, but I was taken off of insulin the next day and sent home. Even in the hospital, because of the “Type 2” misdiagnosis, I was put on a calorie restricted diet. When the endo on duty finally saw me, and saw how extremely thin I was, I was switched off of the calorie restricted diet. Out of the hospital, I was sent to Type 2 diabetes classes, which were profoundly not useful because that’s not the disease that I have. It was all so bizarre. Whatever happened to “first do no harm?” Luckily, within one week (where I did all the research) I confronted the endo and he admitted he had made a mistake, and gave me the correct diagnosis of Type 1. To his credit, he actually apologized. But that was a rough start.
No, nobody was helpful at first except for the student nurses that helped take care of me. They showed me what to do as far as sliding scale goes. They sent some literature with me, and told me to contact my primary doctor and CDE. I moved a couple of months later and I went to an Endo and a CDE. The CDE taught me some things, but not about basal and bolus. I kept records for two weeks and she helped me get off of sliding scale. I was told how much Lantus to do and how much Novalog to do based on carbs. My endo didn’t tach me anything either. He checked my feet and such and asked if I had questions. Since I seemed to be doing fine, I didn’t know what to ask. Everyone always seemed so busy and rushed. I also think I was too embarrassed to ask. My fault, but I really didn’t know what to ask. I didn’t realize I could do tight control by adjusting myself. It doesn’t help not having insurance for two years (or limited insurance through the state). Doctors really don’t know about diabetes. He took me off of sliding scale and put me on Novalog and Lantus. Off I went for three and a half years. I did not know what the term bolus meant a year ago, and I did not know what Lantus was for. I often skipped it, and didn’t know what it was used for until 4 months ago. I know, pretty bad right? My current CDE explained what lantus was used for, and told me what bolus meant. She also told me how to adjust my Lantus and I:C ratio. This was before I got my pump. Now I get it all. Took me four years, but I do get it. Still learning right now as a matter of fact.
I know how you felt, I had very poor education initially and after that was too embarrassed to ask and doctors were usually too rushed. It is hard to believe, but I didn’t even know I was supposed to consistently strive for a normal glucose range until I took biochemistry classes in college! What a difference even 15 minutes of just talking to me would have made years ago. I think people in the medical profession need to realize that as important as advancements in the medical field are to make, they have to be passed onto patients directly otherwise there is no point making them.
my god you poor thing you must have been feeling really ill.and bet your poor mother was in shock too…but i’m glad your are okay now…before my son was diagnosed he was just fading away in front us…sleeping and drinking lots…it was my twenty year old daughter that said mam i think he could have diabetes…but before that i took him a few times to the docters…he was throwing and had servere diarrhea he said it was a stomach bug…and all the time it was diabetes and chronic pancreatis.i’m over the shock now and hope your mum is too…take care…janet xx
Unfortunately. most GP’s ( General Practioners) have received very little initial training about diabetes, and unless they have an interest in expanding their knowledge as to the latest treatment paradigms and procedures, they cannot tell a newly diagnosed diabetic a lot ,other than very basic information. The source of the most practical real-world information will probably have to come from Certified Diabetic educators and dieticians, who can help you to find a meal plan that works for your son. Endocrinolgists should have this information, but depending on their " bedside manner" and time to spend with you( most are booked solid in 20-30 minute increments ), you may not get the info you need at one single appt. Hopefully, they will have such support personnel on staff , at a related health center,or can refer you to them.The patient with diabetes has to be his/her own advocate, as there is not oie fit for diabetrs, What works for Diabetic A may or may not work for Diabetic B
Suggestions:Write down your questions and concerns before every meeting with doctors, nurse practioners, educators, etc. As bluefango said above, do not feel to embarrassed to ask many questions. With time , practice,and the proper information, blood glucodse management becomes less overhwhelming . Continue to Read Read Read: books, internet ( this online forum is one of the best). Your son has special needs, but do try to include his input in decisions about his health care, diet, and exercise as much as possible: He is the one who has to live with it!! I am praying for you and our son.
OH yeah, the juice. Every day at 2 pm a little volunteer lady would bring the juice cart around. The lady in the next bed also had db and would take a big serving of juice. No wonder they couldn’t figure out why she was over the wall before supper. When I mentioned it to her, she said, “well, they offered it so it must be okay for me to have…”
oh kathy the poor woman i bet she felt really ill…janet x