Hello from a newbie and please read about my non-diagnosis... thanks :)
Hi all and thanks for the warm welcome. I would love your opinions on my story. I will try and give you the short version.
I was diagnosed 3 years ago at the age of 37 with Type 2. My grandmother had Type 2, diagnosed at age 60 and was overweight. My mother has lupus which is an autoimmune disorder. I was always very slim until I started having kids. I have still never been overweight although I have put on some pounds in the last year or two – I find I am always hungry now. I have what I consider a reasonable diet and exercise level. I had impaired glucose tolerance in all of my pregnancies, have 3 healthy children and had 3 late miscarriages (14-16 weeks).
After being diagnosed, I managed with diet and exercise for about a year. Well, not really, because my bgs got high and I probably should have started meds sooner. In the past year and a half I started Metformin, more metformin, added Diamicron, saw an endo, she denied any possibility of LADA, switched off Diamicron to Janumet, then dropped the Januvia but kept the Met to begin a clinical trial in Sept. ’10. A1C’s have been in the 7’s this whole time. Study drug has not helped.
By Nov., the endo added Diamicron 30 mg. I worked up my nerve and asked her again about LADA. She said she is 100% sure that I am Type 2 and my progression is normal for Type 2. I went over the possible markers for LADA – not overweight, family history of autoimmune, under 40 at onset. She just kept saying if I had type 1 I would need insulin. In early Dec., my bgs were still high and she upped the Diamicron to 60 mg, two weeks later still high, upped my Metformin to 2mg per day.
I went to my CDE this week and my last A1C was 8.8. He is recommending I stop the study drug and Diamicron and start on Lantus asap. I am so ready, I don’t even care about needles anymore and I used to faint practically at the thought! But after feeling crappy for 3 years, it’s time. I have an appt tomorrow with my family doctor to get the prescription.
It has been driving me bonkers that the endo will not test me for LADA. I can’t really put my finger on why it bothers me so much. I guess I just feel frustrated that I have tried to eat well and exercise and comply with the meds and still my bgs and A1C are so out of whack. I think 3 years is fast progression for someone with a reasonable healthy lifestyle. The CDE tried to reassure me that it doesn’t matter, I need insulin either way. But it matters to me! I realize you can’t diagnose me but…. I have diagnosed myself with LADA!!! I will still ask my family doc to order the tests. But in any case, I need to let this go and move on and the only way I can do that is to satisfy myself that a diagnosis of LADA makes more sense than Type 2.
I came on here because I thought some of you could probably relate to my story and maybe I won’t feel so alone and frustrated. If you made it this far, thanks for reading my about my diabetes journey so far!
Daria
I was diagnosed 3 years ago at the age of 37 with Type 2. My grandmother had Type 2, diagnosed at age 60 and was overweight. My mother has lupus which is an autoimmune disorder. I was always very slim until I started having kids. I have still never been overweight although I have put on some pounds in the last year or two – I find I am always hungry now. I have what I consider a reasonable diet and exercise level. I had impaired glucose tolerance in all of my pregnancies, have 3 healthy children and had 3 late miscarriages (14-16 weeks).
After being diagnosed, I managed with diet and exercise for about a year. Well, not really, because my bgs got high and I probably should have started meds sooner. In the past year and a half I started Metformin, more metformin, added Diamicron, saw an endo, she denied any possibility of LADA, switched off Diamicron to Janumet, then dropped the Januvia but kept the Met to begin a clinical trial in Sept. ’10. A1C’s have been in the 7’s this whole time. Study drug has not helped.
By Nov., the endo added Diamicron 30 mg. I worked up my nerve and asked her again about LADA. She said she is 100% sure that I am Type 2 and my progression is normal for Type 2. I went over the possible markers for LADA – not overweight, family history of autoimmune, under 40 at onset. She just kept saying if I had type 1 I would need insulin. In early Dec., my bgs were still high and she upped the Diamicron to 60 mg, two weeks later still high, upped my Metformin to 2mg per day.
I went to my CDE this week and my last A1C was 8.8. He is recommending I stop the study drug and Diamicron and start on Lantus asap. I am so ready, I don’t even care about needles anymore and I used to faint practically at the thought! But after feeling crappy for 3 years, it’s time. I have an appt tomorrow with my family doctor to get the prescription.
It has been driving me bonkers that the endo will not test me for LADA. I can’t really put my finger on why it bothers me so much. I guess I just feel frustrated that I have tried to eat well and exercise and comply with the meds and still my bgs and A1C are so out of whack. I think 3 years is fast progression for someone with a reasonable healthy lifestyle. The CDE tried to reassure me that it doesn’t matter, I need insulin either way. But it matters to me! I realize you can’t diagnose me but…. I have diagnosed myself with LADA!!! I will still ask my family doc to order the tests. But in any case, I need to let this go and move on and the only way I can do that is to satisfy myself that a diagnosis of LADA makes more sense than Type 2.
I came on here because I thought some of you could probably relate to my story and maybe I won’t feel so alone and frustrated. If you made it this far, thanks for reading my about my diabetes journey so far!
Daria
Replies to This Discussion
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Permalink Reply by Randy on -
Welcome Beachbum. I am new here too and just diagnosed last October. I went through pretty much the same process only for about the first 4-6 weeks. I am now on Lantus and Apidra. Like you the meds just did not move my readings much at all. I could never get below about 270. Now my morning readings run from 110 to 125. I am still trying to balance my food intake and insulin, but for the most part I am below 150 and feeling much better (still have a ways to go, but better). It amazes me how long some people have to wait for a valid diagnoses. I feel very lucky that my Dr. has listened and been willing to adjust my treatment.
Hang in there and pay attention to what your body is telling you. TUD is a wonderful place to get solid feedback and to learn what others have done. Like many others I would recommend getting the book "Think Like a Pancreas" to better understand what is going on for you. I'm only half way through it and already have learned so much (fun read too) -
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Permalink Reply by Becky on -
WOW!! I do identify, but it was endocrinologist that got me going in the direction I needed. My family doctor is the one who screwed me up. Continually increased my oral meds (metformin, actos, and two other I don't even remember their names). My blood sugars as well as my cholestoral continued to rise. I am no where near overweight, but was eating a 'diabetic diet', exercised -aerobics and weight training - daily, but was no help. The meds he had me on were giving false reading on my kidneys - let me tell you, I was a mess. There is a STRONG history of diabetes in my family, both sides and I'm talking Type 1. My sister is considered a brittle diabetic and my father was on insulin as far back as I can remember. But my family doc insisted I was Type 2 and I needed to modify my diet and continue the meds as prescribed. He even accused me of not taking them. My endo was my savior. After taking an extensive history and doing tests, he weened me off the metformin and two others and put me on insulin. Brought my A1c down in the 7 range. It still bounces and sometimes I have a bit of trouble, but the way I feel is like the difference between daylight and dark. (and my renal tests are coming back to the normal range!!)
Don't 'ask' your doctor to do tests. INSIST UPON IT or else find another doctor. There are so many good ones out there that will listen to their patients as they are the only ones that know what is going on with their own bodies. Hang in there. Things will get better~~
(:=Becky -
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Permalink Reply by Beachbum5 on -
Thanks for the replies Randy and Becky. It is nice to know I'm not alone. (Although I wouldn't wish this on you!) I will get that book, Randy. Thanks for the recommendation.
Update: I went to my family doc today who started me on insulin and ordered the tests for LADA! I feel like I'm finally getting somewhere. I should have just stuck with him in the first place. He actually listens to me.
P.S. I should have mentioned I live in Canada, in an area where we have a shortage of doctors. -
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Permalink Reply by Melitta on
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Hi Beach Bum: Your story is similar to so many of us here on TuD, including TuD's founder Manny Hernandez (who has LADA/Type 1 but was misdiagnosed as having Type 2). Sadly, it is really common. Take a look at my blogs about misdiagnosis, especially my "Manifesto for the Misdiagnosed." There are several Canadians (Nel and Kelly) who also were misdiagnosed, and Kelly has been collecting stories of misdiagnosis, and Kelly has written letters to the Canadian Diabetes Association regarding the problem of misdiagnosis. Also, Zoe (here in California) is someone who was not on insulin for several years, she had LADA, and she has just started using an insulin pump!
I am really glad you are going on insulin and that the appropriate tests have been ordered. Hang out here at TuD and you'll get lots of support. Ask us any questions that you need to ask. -
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Permalink Reply by Zoe on -
Hi Beach Bum and welcome! You are definitely in the right place. As others have said before me, unfortunately ignorance and misdiagnosis is still running rampant in the medical community though I do hear inklings that it is getting better (some people are actually diagnosed LADA at the start!). Your endo's response to your questions: "You can't be type 1 because you would have to be on insulin" reveals that she doesn't have a clue that LADA even exists! I actually saw an endo in Guatemala where I lived after I'd already figured out I was LADA. She was humble enough to admit she had never heard of it, but looked at my list of characteristics (lost 40 lbs at and after diagnosis, sensitive to insulin, low c-peptide, another autoimmune disease and only 15 months till I needed insulin) and said simply, "You are type 1".
And yes, after a frantic search to figure out why my numbers were rising so soon and the oral meds were no longer working, and concluding myself that I was LADA it felt SOOOO good to hear those words. They were confirmation. I was right; I wasn't crazy and it all made sense. It wasn't until later that day that I thought, "I'm happy to be type 1, what am I nuts??!!"
The endo won't test you for LADA because he's never heard of it and he doesn't want to either admit that or do the work needed to improve his knowledge base. Hopefully your regular doctor will be more humble. (My own doctor admits he doesn't have any type 1 patients and I just tell him what to write and he does it). Starting on insulin is an adjustment in your life (you will probably find the actual injection a lot less scary than you thought - it hurts less than testing), but it sounds like you are very ready. I understand your frustration. It was almost exactly two years ago that I started my search to figure out what was going on and I still remember how overwhelmed I felt. Things will get better for you now. I'm glad you're here. -
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Permalink Reply by Paul Underwood on -
I was misdiagnosed type 2, its common and you do not need to be slim to get type 1, that's another misconception that is never talked about anywhere. I was overweight, got a nasty cold, then i started to lose it all, within 4 months I was thin as a rake and eating fruit all the time . I remember the day i bought 15 plums and ate them all at lunch time, i then drank 2 litres of apple juice. I remember that day very well. soon after i booked myself in at the doctors.
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Permalink Reply by peruvianpasohi on -
Daria: I am sorry to tell you, but the tests may not come out conclusive. The Lada and type 1 autoimmune markers will only be present intermittently, when an actual assault is in progress on the pancreatic cells. Also, there is a form of "idiomatic Type 1.... which means " don't know why. For my, I have oversimplified that type2 is insulin resistant, and type one is insulin deficient. THAT IS AN OVERSIMPLIFICATION, but it helps me live my life. If it is any consolation, I recently had an endo tell me that I was Type 2, even though my correction factor is 1unit to 90- points, and I use @ 22 units/day, and I almost starved to death when on orals, because my c-peptide was never over 0.5.. The CDE is partially correct, in that it doesn't matter what you call it if you need insulin, either from overproduction of insulin in a long term type 2 literally wearing out the beta , or autoimmune attack of beta cells. it is even possible to be "lottery lucky" and have both type 1 and type 2 in the same body. HOWEVER, charting is everything, in terms of insurance payments and care. Remember also, that until the 1970's type 1 was not recognized, and LADA has only recently been recognized and defined as a subset of the type1 class
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Permalink Reply by Susi (Ladalife) on -
Um... as far as I know, with GAD antibodies, which are the main ones for LADA, they will stay positive for a very long time.
As for , It certainly was recognised, it was just called "juvenile diabetes" and doctors certainly knew the difference between that and "mature onset diabetes" (Type 2). Names were changed because it was recognised that younger people got Type 2 and older people got Type 1.
LADA has been recognised since 1986, that's 25 years!
Through your honeymoon period (while your beta cells are being destroyed), GAD antibodies will usually stay positive. I've read differing opinions on whether they stay positive through your life. At one stage I read that GAD antibodies were the most likely ones, of all diabetes antibodies, to stay positive through life, but an explanation wasn't given and I can't find where I read that. -
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Permalink Reply by Zoe on
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LADA has been known about that long,but it still hasn't been recognized by the ADA. The best a doctor can do is say "Type 1, slow onset". This despite the fact that there are approximately 2 million people just in the U.S. with LADA, about double the number of people with "regular" Type 1.
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Permalink Reply by Linda G on -
It bothers me, reading this, that the idiot endo does not want to test you for LADA!! What the heck....why not?? What is there to lose!! She's probably afraid to be proven wrong. You CAN demand to be tested!
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Permalink Reply by nel on
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beachbum5...how are you doing ??
From the CPG http://www.diabetes.ca/files/cpg2008/cpg-2008.pdf page S10 a note about LADA .Show this to your Endo !
Please visit also : Canadian Diabetes Association's Easing the Burden of Diabetes THINKahead.Posted by nel on June 4, 2011 at 5:42pm in Canada Diabetes
...as a participant I did stress, that I was misdiagnosed in 1983 ( age 42 plus ) and received meds for almost 2 months , followed by insulin treatment .
I have been promised , that the 2013 Clinical Practice Guidelines will reflect the tests required .
Hope to see you around ...also in the Canada Group ?? -
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