Really? Thanks for that tidbit Melitta, more good information to know. I'm learning so much from you all. My PCP's nurse said that autoantibody testing was way too expensive to do and did not see the need for it. She said she was speaking on his behalf, yeah right.
For my peace of mind and health, that price is worth it. I think I can convince my rheumy to approve the testing, especially since both my PCP and Endo have refused and want him to order the test. And I've always been a paradox to him anyway.
And it is really unfortunate that even if you are willing to pay out of pocket for the lab work, some doctors are so insistent that they are right you have to fight to get the tests. I had to fight to get CGM - and I was paying out of pocket for it, but it required an Rx. Granted I am very fortunate that type 1 is basically all I have to deal with, but from what I know (anecdotally)with no other medical condition or disease do patients have to fight so hard for treatments etc. Friends with MS have much more ease in approaching their specialists and accessing new tests and treatments.
I loved that during the two years I lived in Guatemala I could just walk into any lab and request a test, then return a couple days later and get the results. If I wanted to take them to a doctor to discuss that was my choice. We could also buy all prescriptions over the counter. Nothing like being treated like a grown-up!
My doctor is very willing for me to have a CGM -- in fact, because of hypo unawareness, he recommends it strongly. However, I'm on Medicare, which doesn't cover it, because they consider it to be "precautionary" as if taking precautions wasn't a GOOD thing. Nevertheless, I am fortunate, because my secondary covers 80%, but I just got a bill, and realized that if I used the sensors for only one week, as recommended, I would be paying $300 a month for them, and I can't afford that. So I reuse them, which I'm SURE they're trying to figure out some way to make that impossible. I think that getting coverage for the devices we need is number one priority for the time being. I see all the publicity for finding a cure, which is all well and good, but it's not coming tomorrow or next year, and maybe not even in the next decade or two, and meanwhile, we have to LIVE with this disease! I don't see them denying braces and crutches or walkers or powered wheelchairs (expensive!!) to people with mobility disorders -- why do they deny US what we need???
Unfortunately, that's the problem or solution (depending on how you look at it) of having an "invisible disease". Those who make the rules think they have all the answers, but they really don't have a clue.
RA patients are denied the higher priced meds that stop the progression of the disease and allow them to be productive to society (i.e., continue to work and care for themselves).
Diabetic patients are denied supplies and equipment that will help them manage the disease and prevent complications that will further damage possibly cause disability or worse.
But until these policy makers walk a mile in the patient's shoes, they have no clue as to the harm they are causing to millions of patients and it's only going to get worse.
Aren't you glad the "soapbox" is big enough for more than one of us?! I think that a lot of the decisions made by the policy makers (especially those who aren't personally touched by chronic diseases/conditions) its based on short-sightedness. It isn't their problem if due to their decisions to deny adequate supplies and equipment, people with diabetes (or any other condition) end up with complications. And it isn't just a "quality of life" issue. Complications and disability are expensive. But the way health coverage works in the US, people don't stay with the same health coverage. So for a health plan to say "no" now is easy - it won't be their problem (read: expense) later on down the road.
Regarding Eucritta's comment, "I'd never before encountered such difficulties with access, coverage, misinformation and ignorance as I have with diabetes. So, I'm inclined to think it's due to more than expense." Yes, as this entire post shows, there is ENORMOUS ignorance about Type 1 diabetes in the medical community, particularly about adult-onset Type 1 diabetes. Here is some info from Dr. Anne Peters, one of the co-editors of The Type 1 Diabetes Sourcebook: The impetus for the new statement ["Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association"] came from recognition of the dearth of information specific to type 1 diabetes in adults and the frequent and often inappropriate extrapolation of evidence from type 2 diabetes studies to type 1.
"We have this growing population of type 1s who are being treated like type 2s, and it's not the same disease," coauthor Anne L. Peters, MD, professor of medicine at the Keck School of Medicine, University of Southern California, Los Angeles, told Medscape Medical News.
Going back to Jan 1983 at age 42 1/2 : weight loss , eyes funky , itchy skin , drinking water , not sleeping and made a GP appointment .I told him my thoughts on the Friday, that I had diabetes .I peed in a kidney basin , he dipped a stick and the result : yes , you do and sent me to the Lab on Saturday ( I recall BG 320??) .I was prescribed medication and every week to the Lab to verify my blood glucose . Number came not down below 250 .I asked if I could be put on insulin ...the Doc listened and was hospitalized shortly after our discussion for 5 days .Same hospital I was working in as Director of Food Service ...maybe this helped as I had privileges such as leaving the hospital for my daily walks ...I had to be in the Lab by 4 pm .It was not till several years later , that instead of me using the " I have diabetes " that I started to use " I have type 1 diabetes " .I became e member of the Canadian Diabetes Association , worked closely with the hospital's clinical dietitian . Our Hospital had a Diabetes Clinic as well ...I felt priviledged so to speak :) My present Specialist shared a few years ago , that she had diagnosed a patient at age 65 ...and some in our pumpers group were diagnosed at older age as correctly , others were misdiagnosed ( by a GP , who mostly treated type 2's ...we are a community of lots of seniors ) PS No A1C test available when I was diagnosed .
Nel, you are indeed lucky that you were put on insulin so quickly, rather than lagging/suffering in Misdiagnosis Land. And with all your energy that you have put into benefiting ALL people with diabetes, we are lucky to have you.
I was diagnosed as Type II at 43 (1999)--pretty physically fit and maybe 10 pounds overweight. Began insulin shots within two years because the pills weren't doing it. Not diagnosed with Type I until last year when I finally saw an endocrinologist. My GP who I like, was not interested in referring me to specialist. I didn't push it because I liked him. I know it sounds pretty weak.
I was first misdiagnosed has t2 by primary doc. Put me on medformin. Next day I threw up in my cereal and felt awful. Took myself to er, had lost 16 lbs, had ketones, bs over 600, a1c over 12. After ICU, put on insulin and diagnosed t1. This was two years ago at age 55. Now on Medtronic pump and cgm.
WOW! Now I am REALLY confused as to what kind of D I have. I have been told that I was LADA, T1D, Adult Onset D - and after reading this discussion think that maybe I'm really a Rapid Onset TID??? My diagnosis came in Jan 2009 - at age 57. I remember joking at a 2008 Christmas party that I wasn't worried about eating all the great party food because I had lost a few pounds. Little did I know.... In January I started getting up in the middle of the night to guzzle water and pee. I thought, "Oh my God, I am diabetic." The next morning, Friday, I was telling my assistant that I believed that I was D - when she said "Do you want to check your blood sugar with my meter?" I was stunned - she was D and was ASHAMED to let anyone know that she was D. I used her meter - my blood glucose was 549. I called my GP and they told me to go to the ER because I needed to start insulin immediately. I was so ignorant that I scoffed at them and told them that I wouldn't go to the ER but that I would come to their office on Monday morning. I didn't eat much sugar that weekend, and decided to fast Sunday evening. When I got to my office Monday morning, my BGL was way over 200. When my regular GP was told of my Friday phone call, he had set my appt with a new GP in his group. My "NEW" GP told me that even though I was not a "poster child" for D (thin body), I had LADA and must start insulin immediately. - She was awesome! D is one of her areas of specialty. She took me to see a diabetic pharmacologist in the same office and I was taught how to inject insulin that very day. So I was fortunate - but often wonder how long I'd had the disease (no family history). My theory is that it was caused by shingles that I'd had in June of 2008. I believe that my immune system went nuts in attacking the shingles and attacked my pancreas also (my shingles were located right above my pancreas). Tomorrow I start using the Medtronic MiniMed 530G CGM - I'm a little anxious. Anyone out there using it? I'm beginning to think that everyone over 30 should be tested for D...
Hi Melody: IMO, you have rapid onset Type 1! Certainly not slowly progressive Type 1 diabetes (aka LADA). You are very fortunate that you received good treatment from the start. Good luck with the MiniMed!
I have been fighting diabetes since 2005. Then I was diagnosed as a type 2, male 5 foot 10 and weighing 180 lbs. Several family members, like my mother wondered how could I be a T2. As the years passed I managed to keep my blood sugar under control on meds, diet and exercise. I was sent to diabetic classes and such. Back in April this year, my body felt like it hit the wall. I was on 4 different meds. Told my then doctor I just don't feel good, I felt like my life was being sucked out of me. "Oh no, nothing is wrong with you" the doctor would say. Found another doctor, who put me on insulin. I was referred to Endo. The Endo ran some blood test. Just the other day he confirmed with me that I was a T1 and a candidate for an insulin pump. Meantime I had to go to ER for hypo last week. Doctor reduced my insulin from 30 units a day to 15 units. The drop in insulin has made me feel real bad since then, the same feeling I had back in April. Currently I am working on the issue with the Endo. I had to take some sick days off at work over all this. This year, I feel like my life has been like a soccer ball being kicked around.
I'd suspect you're a type 1, but with the latent autoimmune diabetes in adults/LADA type onset that people talk about where you have it for years and can treat it for a while (sometimes a lengthy amount of time) as type 2 but as soon as your pancreas truly calls it quits you are full on insulin dependent. It's slower , but it's still type 1. Some adults don't experience a super slow onset of it.
Hi Tim: Have you worked with a CDE on carb counting and matching your insulin to your carb intake? It sounds like maybe you have not been given enough information on how to use insulin? Speaking of that, there is a great book by John Walsh, "Using Insulin," and a great book by Gary Scheiner, "Think Like a Pancreas." It is tough to make the adjustment to using insulin. I am glad that you have finally been correctly diagnosed, but sorry that you are going through a difficult time.
Hi Melitta: Yes I have been working with a dietitian since April. I feel like I am having to relearn diabetes all over again. When I first started on the long acting insulin I was told to take it in the mornings. The doctor adjusted my insulin doses because of the intensity of the type of work I do. Now I take 5 units in the AM and 10 at bedtime. Yes! I did find the book "Think Like A Pancreas," and currently reading it. Like the author, he was told to self adjust his insulin. So, I too brought up my AM dose by 5 units. Since I've up the dose, I do feel much better. I have to say this year has been HELL for my wife and I in many ways. She and I try to stay optimistic, thing will get better! BTW, I have been reading your material on-line about LADA. Your wealth of information has really opened my mind more about diabetes. Thank You!
