I remember how hard you struggled, LiL MaMa! And it's nice to see your face -- haven't seen you in a while. How are your kids? :-)
You should “care” about your diagnosis because in general Type 1’s have an easier time getting things covered by insurance. Usually easier coverage for pumps and CGM’s and often a bigger allowance for test strips. So if you’re Type 1, you don’t want to be classified as T2.
Melitta - here is some good news. I read about a new blood test that can determine is there is insulin resistance going on. It is called the DISTq. It is a simple and I believe inexpensive lab test that if widely used could keep people with rapid onset type 1 as adults from being "automatically" Dx'd with type 2. If you google DISTq, I believe it is a British journal that is the initial reference.
Hi.
I was losing weight and was thirsty and urinating a lot. My doctor said it was the cold weather but thankfully the bloodwork told the real story. I was hospitalized with sugars over 500. while I was optimistic about living life with diabetes, the professionals were sure to depict a sadder existence for me. They showed me a patient with his foot gnarled up thru diabetes, they told me it will forever affect my life and my moods, they kind of scared me a lot. It was not very positive. However, I am thrilled to see today many optimistic sites, resources and blogs and just real talk on diabetes. I am loving all the new people voicing up, that do not offer just the medical professional point of view.
Claudia, I hear ya, regarding the med's**t out of us upon Dx is gonna do us anty good. I recall my mindset being greatly changed (in the improvement side) when I met another person with type 1 who had adventures, a great family etc... I wonder when the med'l folk will realize that showing us that anything is possible, and how to get there is far more effective.
I was 27 when I started having problems.
It was summer and the weather was hot, so the fact I couldn't walk the length of the street without stopping for a bottle of water didn't seem odd in the first week. Then the leg cramps started. After two weeks with little sleep, I went to my doctor and begged for help. I also pointed out that I seemed to be losing weight all of a sudden. He told me it was the increased activity due to the warm weather, walking instead of taking the car, etc. But I knew I was working 12 hour day/night shift rotations and had no time for lots of exercise.
He gave me a month supply of quinine tablets for the leg cramps and sent me off. Next month, I was back again asking for more. In two months, I'd lost 2 stone and nothing seemed to stop the tiredness, thirst and frequent peeing. I was starting to wonder if the peeing was a sign of prostate trouble! I got sent away, he said I wasn't getting a prescription for more quinine. Two weeks later, I was back and demanded he take blood for a barrage of tests. There had to be something wrong. He claimed the blood was "contaminated" as the results from the lab made no sense. He took more.
Meanwhile, at work, a coworker with diabetes asked if I would let her prick my finger for a blood test using her meter. It was off the scale, flashing "chi ketones". I went to doctor the next day but he was adamant I was not diabetic, although he admitted the sugar in my previous tests was quite high.
Two days later, I came home to find a message from a registrar at the local hospital. He was concerned they'd received several blood samples that month but the patient had never appeared at the hospital. The message asked me to get there as soon as I heard it, there was a bed waiting for me in the admissions ward.
Thanks to the registrar, I got diagnosed as type 1 the next morning by the consultant. His letter to my GP was scathing. Loss of 3 stone in three months, thirst, peeing all the time, etc. Classic Type 1 but he'd ignored it because I was 27. I changed doctor.
Seventeen years later, I am on a pump to help me with basal as it's always given me problems. I moved to an area covered by a different health board and my new consultant told me last month that she doesn't think I am type 1 as I was too old at diagnosis and am "not skinny enough". She's insisted on GAD antibody tests to confirm I am not type 1.
I think she'd get on well with my former GP.
:(
Chandler, I am sorry for all you have had to go through. It is crazy that the medical system ignores the really, really obvious. As for your new consultant saying you are too old and not skinny enough for Type 1, the fact is that weight has nothing to do with it (other than the typical rapid weight loss prior to diagnosis) and Type 1 happens at any age. Dr. Anne Peters, editor of The Type 1 Diabetes Sourcebook, says she has diagnosed people with T1D in their 90s. Mary Tyler Moore was diagnosed at age 33.
What she said. I wasn't thin and am not thin, and do have a bit of insulin resistance, but I'm still a T1. I was LADA, so I had a cushion, but it's not there any more. I hate to see T1s misdiagnosed and mistreated by medical professionals who have no idea what they're doing. :-(
Especially since there is a simple - and from what I understand inexpensive test - that can determine type quite accurately. I was skinny (about 100 lbS at 5'6") but because I was 30 years old I HAD TO BE TYPE 2 It took an attending in the ER to determine (he knew it right away) that I was typ e1. Still,it took awhile for the private practice MD's to recognize that the DKA (that resulted from being treated for type 2) wasn't due to my mis-mgt since it is a childhood disease. I was lucky I worked for EMS and FD, cuz they got me to the emergency dept straight away.
That's exactly what happened to me....I walked into emergency and asked to be tested for diabetes and was scorned and asked if I was trained in nursing and was play acting doctor to myself....but when the blood tests came back they immediately put me on insulin that same day. I was 24, so was considered young and inexperienced and having a nerve to have common sense. How I had found out was through my BF having gone to a library to look up a few things and bringing me back some printouts of what he discovered. That was before the Internet existed for the common lay person....in 1981. I did buy books but those were ultra simplistic and spoke of the basics in how to take insulin and that is NOT at all the issue as what people should do is find out why they got it and have a way better idea now than I did 34 years ago.
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To Still_Young_at_Heart....by any chance do you have a gold/copper crown in your dental work or different metals in teeth next to each other?
Artwoman, I was not as thin as you when I was diagnosed in 1981, but I was the same height and 130 lbs and did 2 miles of walking a day so was fit. But my case was brought on by having a gold/copper crown put on one tooth less than a year before my diagnosis, plus I had also started the birth control pill which can be an interfering factor in the way insulin works so requires more insulin to be produced. But I did not really need to be diabetic if I had read what I know now about nutrients because that is what I was lacking. Sometimes the start of something can be a complex of several factors.
But what really bothers me is that people should know about homeostasis and the fact that taking a hormone from an external source can cause the body to down-regulate and produce less, so it is highly unwise to take the insulin approach first. I only was on insulin for 6 weeks then off altogether for many months later with a honeymoon period lasting almost a year. Then when I went back on it was taking about 6u total per day for years, or none at all if I had been using my bicycled a lot. Even today, after having become totally insulin dependent I still take 10-25u depending on the circumstances.
I don't think most medical professionals would argue that the use of insulin causes a down regulation of pancreas function and a loss of beta cell mass. By the time anybody is diagnosed as diabetic they are experiencing higher than normal bloods sugars that can be destructive to beta cells. Most of the advice I have seen suggests that early use of insulin can normalize blood sugars, minimize beta cell destruction and overall preserve beta cell function. I think this applies to type 1 and type 2.
I began Low dose Insulin therapy, early. It has indeed resulted in "normalized BG's and continued good but low C peptide numbers.
Insurance has denied continuing using my Dexcom G4 due to "too good control".
Agreed exogenous insulin should not cause beta cell destruction, but multiple doctors and researchers have suggested to me it is likely to suppress endogenous insulin production, which seems fairly intuitive.
Parrformance, that is crazy that you were denied continuing the Dex due to "too good control." I have Kaiser, and back in 2011 when I requested a Dexcom (after a failed experiment with Medtronic Guardian), my endo said that she would promote my getting the Dex but that it might be denied because of my good control. I said, "Why should I be penalized for maintaining good control?" My endo was able to make the case, and I have been wearing the Dex ever since.
Was thinking the same thing Melitta....so, what will happen to the "too" good control now? Pennywise, pound foolish decisions make me crazy.
ooohhh, Niccolo used the intuitive word ;) lol.
It is frustrating when insurance doesn't see that the Dexcom (or CGM in general) is a major part of the "good control". I have Kaiser in the Pacific NW and they don't cover it so I pay out of pocket. I do get to pay the "KP" price (which is less than straight retail), but still pennywise and pound foolish sums it up. Would they rather pay for the consequences of poor control? I know that my Dexcom giving me the trend info allows me to dial in the appropriate insulin doses 24/7. And we're not getting into the quality of life issues here - just the economic benefits!
I'm in a similar boat. My prior insurance, which ultimately approved it, didn't care a wit about what my endo had to say. Two lows below 50 (as documented by an actual printout of the meter readings) were all they cared about. The day after I inserted my first covered sensor, my employer announced we were changing insurers. Out of pocket since then.