Melitta's Top Ten Tips for the Newly Diagnosed Person with Adult-Onset Type 1 Diabetes

My list for the newly diagnosed, in no particular order:

1) Despite what you may be told by medical professionals and what you might read, you (as a person with adult-onset Type 1 diabetes) are not “rare” or some “minority.” Adults represent the vast majority of new-onset Type 1 diabetes (Footnote 1); it is a widespread myth and falsehood that Type 1 diabetes is a childhood disease.
2) Learn all you can, but at a pace that does not overwhelm you. Good sources of learning are “Think Like a Pancreas” by Gary Scheiner (although he does perpetuate some myths about adult-onset T1, but the rest is gold), “Using Insulin” and “Pumping Insulin” by John Walsh, and the Type 1 University (Type 1 University link). Be wary of the Internet—there is lots of good, but there is lots of very bad.  Connect with others with Type 1 diabetes (or other type of diabetes), either via TuDiabetes or other online forum or an in-person meeting; we can all learn so much from each other and it helps to feel connected and not alone.
3) Get a correct diagnosis: many if not most people with adult-onset Type 1 diabetes are misdiagnosed as having Type 2 diabetes. It is important to get a correct diagnosis to get the correct treatment (exogenous insulin); being treated as if you have Type 2 diabetes may be extremely harmful. Get the full suite of autoantibody testing (Glutamic Acid Decarboxylase Autoantibodies (GADA), Islet Cell Cytoplasmic Autoantibodies (ICA), Insulinoma-Associated-2 Autoantibodies (IA-2A), zinc transporter (ZnT8), and Insulin Autoantibodies (IAA, Footnote 2). Don’t just get GADA, because many people with adult-onset Type 1 diabetes are only ICA positive. Antibody testing is the gold standard test for Type 1 autoimmune diabetes: if you are antibody positive, you have Type 1 autoimmune diabetes. The suite of antibody testing, full price, costs ~$750 at Mayo Clinic. The c-peptide test, which shows how much insulin you are producing (virtually all children and adults with new-onset Type 1 diabetes are still producing some endogenous insulin), is useful, but does not provide a definitive diagnosis.
4) Begin intensive insulin therapy as soon as you are able. The correct treatment for Type 1 diabetes, at whatever age it is diagnosed, is exogenous insulin as early as possible, to control glucose levels, prevent further destruction of residual beta cells, reduce the possibility of diabetic complications, and prevent death from diabetic ketoacidosis (DKA). Many adults can prolong the “honeymoon” period (the time when some remnant beta cells are still producing insulin) with intensive insulin therapy (including using an insulin pump). Bruce Buckingham MD at Stanford has had tremendous success in prolonging the honeymoon by starting the newly diagnosed on insulin pumps immediately after diagnosis. If a pump seems like too much or insurance will not cover one, MDI (multiple daily injections) is good. Early insulin use and prolonging the honeymoon period will make it easier to control your diabetes and greatly reduce the risk of diabetic complications, thus making your life better.
5) Allow yourself time and space to grieve. The diagnosis of Type 1 diabetes is devastating for most people. As an adult, you may wonder what you did wrong to precipitate T1 diabetes (the answer is nothing, it is an autoimmune disease). Grieving often takes a lot of time, more time than we care to admit or allow, so it is important to give feelings of anger, denial, and depression their due. Get the support you need from family, friends, folks at TuDiabetes (who truly understand), and a therapist (preferably one with knowledge of chronic illness) if you want. Do things that bring you joy and well-being: exercise, yoga, meditation, gardening, petting dogs/cats, music, etc. Remember you have been given a second chance at life; make it count. An older book that I think is excellent is “Psyching Out Diabetes: A Positive Approach to Your Negative Emotions” (Rubin, Biermann, and Toohey. 1997). The Behavioral Diabetes Institute is also superb in this area.
6) Consider the wise advice of people at the Behavioral Diabetes Institute: maintain the best blood sugar control you can, avoid lows (hypoglycemia) especially severe lows, and live your life. Don’t think that a cure for Type 1 diabetes is coming anytime soon. If you are a Type A personality, be especially wary of being harsh on yourself for some number on a meter and be wary of trying to achieve some “perfect” A1c.
7) Test, test, test. Lots of blood glucose testing means better control. Don’t allow embarrassment to prevent you from taking proper care of yourself (meaning, if you need to test or inject in public, do it.) Eat to your meter (use your blood glucose meter to test your blood sugar after meals and eliminate from your diet the foods that spike your blood sugar). Follow the rule of small numbers (from Dr. Bernstein: big inputs make big mistakes; small inputs make small mistakes—in other words, lower carb means lower doses of insulin means smaller “mistakes”).
8) Get organized; get your security blanket in order. For me, security comes in the form of backup—I carry my diabetes kit with me at all times. My diabetes kit includes insulin vial and needles, meter and test strips, note from doctor, glucose tabs, and backup supplies for my insulin pump. I wear a Medic Alert bracelet that says I have Type 1 diabetes, an insulin pump, and that I have autoimmune hypothyroidism (Hashimoto’s disease).
9) Use your healthcare team. Find good people who you can work with and who work with you as an individual.  Be your own best advocate within the healthcare system.
10) Get tested for Hashimoto’s Disease and celiac disease, two autoimmune diseases that are commonly seen in people with Type 1 autoimmune diabetes.

 

Footnote 1: Jerry Palmer MD in Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008), page 27.
Footnote 2:IAA test does not distinguish between autoantibodies that target the endogenous insulin and antibodies produced against exogenous insulin. Therefore, this test is not valid for someone who has already been treated with injections of insulin. For example, someone who was thought to have Type 2 diabetes and who was treated with insulin injections cannot then have this test done to determine if he/she has Type 1 diabetes.

 

Comments and feedback are welcome! Thank you.

Views: 3716

Tags: LADA, Melitta, Type, dx, tips

Comment by acidrock23 on January 16, 2012 at 7:37pm

Good tips, I'm sort of disinclined to spend or devote time to grieving and would prefer to pick something you can get into and get into it. I've had great fun with music (although not all of the fun was uh, perhaps clean cut or wholesome...heh heh heh) and now that I'm older, I've gotten pretty into exercise. It's hard to wipe out habits but I don't think anything is impossible and a non-diabetes focus can give you a powerful stick to beat up diabetes with.

Comment by kzruopp on January 16, 2012 at 7:58pm

thnxs so much for this ... good info @ a good time

Comment by Richmatik on January 16, 2012 at 8:03pm

Great suggestions, and I definitely can feel for being misdiagnosed as a Type 2 by my family doctor... needless to say I picked up a bunch of prescriptions one day, and returned them to the pharmacy to be destroyed the next as my diabetic care team corrected the doctor's diagnosis.

If it doesn't seem true - don't be afraid to get something double checked! At the time I was diagnosed I was down to a below 115 lbs, which was uncomfortable low for someone my height - 5'6". :)

Might I also suggest finding people to talk to? We're not alone, but being diagnosed we couldn't feel any more alone. Finding a group or a community of like-minded people definitely helps bring things into perspective!

Comment by Brunetta on January 17, 2012 at 1:10am

Great information, Melitta!!!THANKS SO MUCH FOR SHARING!!
God Bless,
Brunetta

Comment by MyBustedPancreas on January 17, 2012 at 5:44am

Great post! I think it's important to get this info out there. Also, you can add to your list "connect with other T1s to LEARN" - I've learned more from other T1s than I have EVER learned from an endo.

Comment by smileandnod on January 17, 2012 at 9:58am

This is a great list Melitta and great points added by other posters! Any adult diagnosed with diabetes should read this. I am another who was misdiagnosed by internist PCP at the age of 27 as Type 2. Unlike Rich, nobody caught it early (my endo says I was probably honeymooning at the time) and they put me on oral meds as I continued to get sicker. I was begging to be put on insulin because I wanted to feel better.

Comment by Melitta on January 17, 2012 at 10:40am

Thanks so much for all your comments! I tweaked #2 to improve it, based on the feedback.

Comment by Fabiana Couto on January 17, 2012 at 12:02pm

Thank You for taking the time to share your knowledge and wisdom with us, Melitta! I am not recently diagnosed but your tips were definitely useful for me too. Because of your post I just bought the book “Psyching Out Diabetes: A Positive Approach to Your Negative Emotions”, the used one is $3 at Amazon + Shipping... Very affordable.

Comment by nel on January 17, 2012 at 12:28pm

This is great Melitta ...maybe you know my story from back to Jan. 1983 and was on insulin by March 1983 . I am unsure if there is a cost in Canada to the patient , if antibody testing is requested .What I know, living in BC , is that I did not have to pay out of pocket, when the C-peptide test was performed .
My Endo suggested 6 years ago ,to have a bone density scan . She suggested , that PWD maybe at risk for osteoporosis ...yes, I do have osteoporosis

Comment by Natalie ._c- on January 17, 2012 at 7:36pm

Another tip: anytime you hear or see anything in the media talking about "diabetes" close your eyes and plug your ears, because they are not talking about YOU. It's really unfortunate that they usually don't distinguish between obesity-associated T2 and autoimmune T1 and LADA in adults. And most of the advice you get from well-meaning friends and relatives necessitates the same treatment. In particular, stay away from the "blame and shame game" (a hard one for me), and if you have the patience, reassure them that no, neither that special fruit from Tahiti, nor an increase in exercise, nor weight loss will make your diabetes go away. You know what you're doing, and you are doing fine, thank you very much! :-)

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