Well Tim, Melitta is overall SWESOME!
I was diagnosed about two years ago, at age 53. Iād been losing weight, seeing increasingly poorly, drinking and peeing constantly, etc. I never put all these disparate symptoms together, I just worried that I needed new glasses and was getting a UTI. So I went to the emergency clinic on a Saturday. I thought I would pee in a cup and theyād give me some antibiotics and that would be that. Instead a nurse came in and said I had āketonesā in my urine, whatever those were, and asked if she could do a blood test.
It came back 340.
Then the doc came in, told me what I had but that we still needed to figure out what TYPE of D I had, but meanwhile I needed to start insulin immediately, so she immediately wrote me an RX and sent me off to the drugstore and told me to come back with the Lantus and she and the nurse would teach me to u.se it. On Monday, I saw my regular physician, who immediately ordered antibodies tests and a GAD65, both of which came back positive. So, I was put on insulin immediately and never taken off it, and that was a good thing. Reading through these responses, I feel lucky.
I succumbed to T1 at 35 years of age. My bg was around 800. I was in the hospital for 7 days. My Doctor then sent me to the U of Miami Metabolic Unit and they conducted genetic testing to confirm T1. I became part of a double blind study. An experimental drug was administered for a year and the UM unit followed me for 2 years. I credit my doctors with saving my life. Things could have gone very differently. My mother was T2. The bad advice she received, her inability to access competent medical care compounded with her own ignorance ultimately cost her both her legs. Itās been 30 years of 5-7 injections daily for me. A decade of which I was without insurance. Iām now in a high risk zone. My AICās keep escalating. But fortunately for me, I have been surrounded my superb physicians through-out the years. Thanks to the ACA (affordable care act) those scary years are behind me. Iām in the process of getting the Omni pod, which is what brought me to this group! So once again, I feel fortunate, if you can even use that word in the same breath as Diabetes. Iāve found a support group that will keep me informed. Thanks to all those who have welcomed me aboard.
Francine
Melitta, I just read your position paper on this subject. Well done!
I commented on it and I'll simply repeat what I said there:
Bravo. Anyone who has spent any serious time around diabetes, whether in the DOC or elsewhere, knows how pervasive the problem of misdiagnosis is. There are providers who get it -- more of them every day -- but by and large, there needs to be a seismic shift in the medical community's attitude about diagnosis.
And, beating my own personal drum, your third point about education is not only true, it's a single piece of a huge problem. The education provided to diabetics everywhere is scandalously inadequate.
David(dns) great comments. And the education has to cover everyone. The general public needs to know how and why diabetes is Dx'd. If the media (especially during Nat'l D Month) addressed the largely genetic component of type 2 and cause just a few people to think "Hey, there's type 2 in my family, perhaps I should look into it - and does" late Dx and the resulting complications could be avoided. And...again for the general public, people who are Dx'd with D, but it isn't in their family, nor do they know anyone with D, they can be armed with the correct questions to ask for the correct Dx. When I was first mis-dx'd I knew nothing about D, so I accepted the type 2 (I'm Kris in Melitta's paper). And themedical community has to be aware that yes, adults can be Dx'd with rapid onset type 1, and not to just write the Rx for insulin and syringes and send them on their way. At first I was given an Rx for 15 u of N and nothing was said about more tests every so often, changing insulin needs anything. How in the world are we supposed to know what to do - and please have education sessions for type 1 people.
I was diagnosed as Type 2 in March 2012. It was almost 3 months to the day of my brother getting diagnosed with Type 1. I started having all the same symptoms that he had - peeing all the time, thirsty, etc. I got tested and my fasting BG was 216 - they had me eat no carb for a day and tested again - 200. The Type 2 diagnosis was odd to me since I had actually lost about 20-25 pounds over the previous 6 months. I even mentioned that to my doctor, that it all seemed odd, and he said, yeah, that's what sucks about this disease, huh? Needless to say, I wasn't thrilled with his response. Since Type 1 runs in my family, I asked my CDE if there was a way to test if it was type 1 or 2, and she said there was, but it was complicated and very costly, and since I had been responding initially to the meds they had put me on, there was no point. Well, the meds didn't work for all that long - eventually, my #s kept getting worse and worse. And the strange thing was, I was getting healthier and healthier. I was at the healthiest weight I had ever been, yet the numbers got worse. I had just moved to a new state, and decided to see another doctor. And boy, was she a godsend! She listened to my history, the family history, and the symptoms, and asked if anyone had ever done a c-peptide or antibody test. Nope! I told her I had asked about that but was told it wasn't worth it. She clarified that it was a simple blood test. She put me on basal insulin right away to keep me "safe" as she put it until we had confirmation on which type of diabetes it was. My readings had been in the 300s and 400s and she was worried about DKA. Got a whole new round of blood work done, and the GAD came back positive, along with a below normal c-peptide. Started humalog along with lantus, and now have the Omnipod pump. Most recent a1C was 5.9!
I think the key thing for the medical community is to not make assumptions based on the type of diabetes. Do the tests - they are simple, and if you have insurance, not costly at all! My insurance fully covered them, and I had to pay the coinsurance only - I think it was like $31 for the full round of tests (A1C, BG, cpeptide, antibody, etc.). Don't follow "stereotypes;" just because someone is a little overweight and not a child, it does not mean it is automatically Type 2 diabetes. And there's a lot to be said for seeing a specialist - I think a lot of primary care docs think they can manage someone with diabetes if it's well controlled, particularly if it's type 2. If i've learned anything from this, it's that you should SEE A SPECIALIST. They have the knowledge and experience. Granted, that's not always the case - my CDE who told me the tests weren't worth it had been doing this for almost 30 years. So my advice would be that if you are not happy with your treatment, or something seems off, or you're not getting the attention and care you feel you deserve/need, see another doctor and get a second opinion.
Thanks, Matti, for telling your story and for so eloquently providing advice that will surely help others!
I was 39 when miss-diagnosed as Type 2. I was hospitalized for a week and was put on insulin immediately after being admitted and was told I was type 2 because of my age. I had all the classic sudden-onset Type 1 symptoms. Interesting aside....my symptoms seemed to begin on a Tuesday and by Friday that week I could barely see from high glucose. What made things even worse was that to 'quench' my extreme thirst, i was literally chugging can after can of orange crush, which of course made things even worse. When I saw my Dr on the Monday, he tested my sugar with a glucose meter......and then tested it again, then tested his own sugar, then got the receptionist to call me a cab to get me to the hospital. It wasn't until I had my C-peptides checked 2 months later at my request which showed next to nothing for insulin production that I was finally admitted to a clinic and treated as Type 1.
Itās been a while but I will try to recount my diagnosis. It was 1998 and I had just turned 50. We had annual physicals at work and in April, my fasting BG was 109. Toward the end of summer I noticed some changes in my vision so I went to see my eye doctor. At the time I was in very good health and didnāt really have a family doctor. The eye doctor told me he thought I had diabetes. There is no diabetes in my family so I didnāt take it seriously.
In the early fall I developed an unbearable thirst and was running to the bathroom frequently. Then I started dropping weight. I made an appointment with the primary care doctor my insurance had in the system. I didnāt know him at all. I related my systems and they checked my BG and it was 475. He told me I was type 2 and started me on oral meds. I asked about having an A1c done but he told me there was no point because it was obvious I was diabetic. He started me on glucotrol and when that didnāt really help he put me on 1000 mg of glugophage twice a day. He ordered no other tests or treatments.
After a few weeks of this, during which I was living on mylanta because my stumach was so torn up, I decided I needed another doctor. The new doctor added avandia and after a couple months with no other tests had an A1c done. I was still over 7% and feeling miserable and still dropping weight because the diet the doctor wanted me to follow wasnāt enough to keep my weight up. He decided I needed an endocrinologist.
The endo immediately put me on insulin. This was 9 months after diagnosis. I immediately began to feel better, my weight returned to my usual 160 lbs ( I had dropped to 139). And I got my A1c under control. After one year of injections, I got a pump and life has been much better since.
Mine first started when I was not diagnosed at all. While pregnant with my 3rd child I developed Gestational diabetes. After I had him, my endo doctor never checked me to see if the GD went to full on T2. I went over 6 years not knowing anything. I started getting really thirsty and only ice cold water would help, but I was waking up during the night to drink water and go to the bathroom. I also started to notice that my vision would get blurry at times, (I thought it was me needing to get my eyes checked). In 2010 I got pregnant and had a miscarriage. My OB did a urine test after and the sugar level in my urine was really high, so he sent me to the same Endo I had seen over 6 years ago. He took blood and ran the tests and said I was a T2. He put me on oral meds. I got pregnant again, only to lose it again due to the diabetes. When I got pregnant again, my new OB put me in the hospital to get my diabetes under control. While in the hospital I was seen by the on-call Endo and he was a T1 diabetic. I talked with him and told him the problems I was having with my Endo and asked if he would take me on. He agreed. He re-ran my blood work and found I was not a T2 but a T1. He told me my pancreas is not longer working at all. He told me to start look at a pump because I would be wearing one from now on. I remember Nick Jonas from the teen band The Jonas Brother wearing an OmniPod, so I looked into it and decided on that. It fit my life style and I was afraid of my son yanking out the tube as he can be very careless.
My old Endo should not be a doctor. He told me I was not his "typical" patient and he was trying to up my dose od insulin when I was already crashing to 34 on what I was taking. I did suffer another miscarriage, so that is 3 total before finally getting on the OmniPod. After getting on the Pod I got pregnant again and now have a very smart, active, and lovable 2 1/2 year old daughter. I owe it all to my (new) Endo, the OmniPod, and my determination to have a healthy and 9 month pregnancy.
First diagnosed as T2 on Sept.1 2010, properly diagnosed about Jan/Feb 2011. I was set up for a dietitian class,(That was no help at all, I actually knew more then her). My T1 Endo was a great help to me.
The biggest thing the Medical professionals need to know is that Diabetes is not text book and they need to stop stereo typing T1 to just juvenile or obesity. If it was not for my 1st miscarriage, I never would have known I had diabetes. Endo's need to do their jobs better and stay on top of things more. Just because someone does not "look" like the "type", they should still be tested. They need to pay attention to family history as T2 runs pretty heavy on my mom's side.
I think also it may good for them to have a list of websites that may help a newly diagnosed T1 to understand diabetes and what you can do for it. I had done a lot of research and found certain foods or drinks that can help to keep you numbers low. I used to run a Gestational diabetes group when I was pregnant and the information was good not just for those pregnant but and diabetic. Don't discourage a T1 female from getting pregnant. I had a lot of odd's stacked against me, but with the help of my Endo and myself I carried my baby to 38 weeks. My high-risk OB said she wished all her diabetes patients were like me.
I found the worst information to give a newly diagnosed diabetic is you can't eat this or that, or you have to cut these food out. I have not cut anything out of my diet, the only thing I have done was kept my carb count. I still eat cake, pie, bread, rice, pasta and more. I have learned that experimenting is the best thing to do. Good thing too, I found out that Dreamfields pasta does not work for me at all. It is supposed to be pasta made for diabetics, but when I tried it, it did the opposite. With regular pasta I can eat a 2 cups about with bread and count it as my 60g of carbs and my blood sugars are fine. Dreamfields pasta I had only 1/4 cup and no bread, counted it as 60g and my blood sugars were over 260. Now for pies or cake I cut a thinner slice for me. I also don't drink soda or juice. I have coffee (which is one of the things I learned is supposed to help lower your blood sugars)and Unsweet Iced Tea. I rather use my carbs for food then drink.
I also do not test my sugars on my fingers, I use my forearm. I did a test one day when I went to my Endo's for a visit. I check my BS on my forearm and finger and then the drew my blood. My forearm was the same as the blood draw and my finger was 20 points higher. Testing on my forearm does not hurt like on my finger and this way my finger tips are never sore. while pregnant I was testing 10 times a day.
Sorry for writing a book, lol. If you have any questions for me, please just ask.
Christine
I'm not sure or anything this isn't a scientific observation , really, but I feel like type 2's often need to do more diet restriction than people who are type 1. Not saying all, but I eat fairly normally. I do eat whole grain as much as possible, but I don't restrict my diet too much other than I try not to eat too much fat (due to past gallbladder issues, playing it safe even though that thing is gone) or sodium and I am a vegetarian. Diabetes does require experimentation with diet, you can't go for restrictions or not without trying it. I still eat breads and pastas and rice, I do eat whole grain by choice, but I did that before I was diagnosed. As long as I experiment , I usually find I can eat whatever I want. I do play it safe on a lot of things and I do eat low carb for snacks, but not anything else lol.
I'm with you Sensorium. I think type 1 is easier - yeah, we have to do things in moderation =- but doesn't everyone? D or no D? For me, anyway, type 1 is math and chemistry and rather straight forward. Yeah stress can get in the way - I just learned that my house that I am going to put on the market was used as a marijuana farm! Too bad it isn't in Colorado I could add $150K to the asking price. Anyway I digress. It did mess with my readings. Type 2 on the other hand: well to me dealing with insulin resistance is like nailing jello to a wall. And the current science is that the type 2 causes the weight issues not so much the other way around although it is a vicious circle. (like the chicken and egg question which came first? type 2 and the weight or the weight and type 2?)
I disagree, I've had to restrict many foods, my bg swings all over quickly, often for reasons not to do with food or unknown. I'm lucky I survived what I went through and I find type 1 to be the opposite of straightforward, it is unpredictable and anything but easy for me and for many others as far as I can tell. Those who find it to be that should consider themselves very lucky.
While it seems that I am contradicting myself, I also agree with you. I am lucky after 30+ years with type 1, no complications. I've alwayws been rather anal about things, and that suits my managing of type 1 rather well. I don't think I could deal with the effusiveness of type 2. Type 1 seems to me to be more science and math and therefore easier for me.
Hi Christine: Unfortunately, autoimmune gestational diabetes is rarely recognized (I wrote a blog about autoimmune GDM that you may find interesting). Yours is a sobering story; I am so sorry for all you had to go through. Congrats on your second child!
Christine, seems like ANY new onset diabetes during pregnancy is automatically classified as T2 and treated accordingly. But that doesn't make sense, because onset of T1 can be at any time of life. Just because you had 3 healthy children, albeit with diabetes during the 3rd pregnancy doesn't say ANYTHING about what type you had. All you really know is that you were developing diabetes, and by the next pregnancy, it was full-on. And not related to the pregnancy. It would have been so easy to run antibody tests and find out what was really happening, but a lot of docs are not yet accustomed to doing that. Also, even women with gestational diabetes (risk for T2) may need careful treatment and possibly insulin, because they are also at high risk of losing their babies. These facts have been known since the 1940s; it's too bad you ended up suffering from incompetent medical treatment! :-(
I underwent Whipple surgery - which includes partial removal of the pancreas - to remove a duodenal tumor. I was told that I might become diabetic. It took a year, but suddenly my BG was 400. After a day in the first-aid clinic (they wanted to keep in there over the weekend, no explanations, just giving me some insulin) I went to an endo, he saw my medical history but automatically proceeded starting to treat me for type 2, (I'm in my 50's). He immediately prescribed metaformin, no tests, nothing, come back in 3 months. I said - aren't you going to test my C-peptides? I had a Whipple operation! I hardly have a pancreas left -- isn't it possible my pancreas isn't producing insulin? (who's the doctor here, anyway).
He grudgingly sent me for the test, and of course there's barely any insulin being produced. PS 3 years later, I'm on basal and bolus insulin, low-carbs, doing well. DIY medical care seems to work best...
I lost 35 pounds over 4 to 6 weeks time, very thirsty, not feeling well. It hit very fast and hard. One doctor was suspicious right away that I had Type 1 but put me on Metformin, Lantus, and Humalog (sliding scale lol) because of my age. I had been slightly overweight, no gestational diabetes, no history of anybody in my family with diabetes. My C Peptide and GAD Antibodies clearly showed I was Type 1. I was referred to my endo and the rest is history. What I want medical professionals to know is that Type 1 Diabetes isn't just for children, it hits equally in all age groups, and most importantly, nobody, whether Type 1 or Type 2 caused their own disease.Grrr
I was 65 years old when I discovered that I had T1 diabetes. I guess I am lucky that I even knew the symptoms of diabetes from a relative with T2, so when I was gone for the summer in Europe, I noticed the last 3 or so weeks that I was eating like a horse, very thirsty, losing weight and having to run to the ladies' room as fast as I was drinking. My gums were bloody when I brushed my teeth, and I had fuzzy vision from time to time. When I got back, I went to the clinic for my medical group, and they called the endocrinologist (it was a Saturday), who even though I had a BG of 425, said to give me some Metformin and have the lab work done on Monday. By Wednesday I was injecting as a type1. I can say nothing but good things about my medical care, the doc called me from his vacation to tell me I would have to start injecting insulin and then they set up dietitian appointments and gave me lots of good books, cookbooks and general Diabetes Type 1 information. Since then, I only see my endo doc for this and I have been on a pump since October2010after I was diagnosed in June 2010.