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

  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 Type 1 diabetes, but the rest is excellent) and my new favorite Bright Spots and Landmines: The Diabetes Guide I Wish Someone Had Handed Me by Adam Brown of DiaTribe. Sugar Surfing by Stephen Ponder and Kevin McMahon is diabetes management gold. Using Insulin and Pumping Insulin by John Walsh are older but excellent, and the Type 1 University ( is a great source for learning specific skills. JDRF has a T1D Care Kit for newly diagnosed adults that is very good (JDRF Adult Toolkit). Be wary of the Internet—there is lots of good, but there is lots of very bad.
  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 antibody testing (Glutamic Acid Decarboxylase Autoantibodies (GADA), Islet Cell Cytoplasmic Autoantibodies (ICA), Insulinoma-Associated-2 Autoantibodies (IA-2A), Insulin Autoantibodies (IAA), and zinc transporter 8 autoantibodies (ZnT8) (Footnote 2). Don’t just get GADA, because a small but significant percentage of people are GADA-negative but positive for one of the other autoantibodies. Autoantibody 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 autoantibody testing, full price, costs about $471. [Note that although the vast majority of people with Type 1 diabetes are autoantibody positive, those with idiopathic Type 1 diabetes are not. This could be because there are yet undiscovered autoantibodies, or some other reason.] 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, slow the 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). 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. Some people with very slow onset Type 1 diabetes may not need insulin immediately (Footnote 3). But insulin should not be avoided due to fear.
  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 Type 1 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, online (folks at (who truly understand), some excellent Facebook groups), 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. Balancing Diabetes: Conversations About Finding Happiness and Living Well by Kerri Sparling has great tips for living better. 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. If you can, get a continuous glucose monitor (CGM), which in the case of Dexcom gives a blood glucose reading every 5 minutes, and also lets you know what direction your blood glucose is trending. 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/CGM 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 in 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 they have Type 1 diabetes.
Footnote 3: Some people whose Type 1 diabetes is slowly progressive and is caught early can go without exogenous insulin for a time (however, insulin should not be avoided due to fear, either on the part of the person with T1D or his/her/their doctor). Dr. Anne Peters, the acclaimed endocrinologist and co-editor of The Type 1 Diabetes Sourcebook, is positive for four autoantibodies, although she does not yet have symptomatic Type 1 diabetes. Dr. Peters is using liquid metformin and Ozempic (a GLP-1 receptor agonist) to try to preserve her beta cells. Also, a recent study (IK Hals et al, Diabetes Obes Metab 2019;1-9) found that exogenous insulin and the DPP-4 inhibitor sitagliptin worked equally well to preserve beta cell function in people with slowly progressive Type 1 diabetes (note that the older insulin, NPH, was given once a day in the insulin arm of the study, meaning 24 hour coverage with exogenous insulin probably did not occur). For those that are not on exogenous insulin, it is a good idea to have some on hand in case one’s blood sugar rises rapidly due to illness, etc.

Comments and feedback are welcome! Thank you.


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.

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

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!

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

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.

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.

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

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.

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

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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I think your list is excellent and I did most of the things on it.I guess the most important thing that I would add to the bottom of the list is that with time it does become the norm...whether we like it or night.

Wonderful, Melitta!

Lots of good advice on the issue. My main tip would be to get a class that you and your partner and/or kids/family can go with you as well. Do not try to do it all at once and by coming to this site you are on the right track as there is lots of good people and information. The only rule to any type of diabetes is that you are the only one in charge of yours.

Melitta, a great piece you put together; as others have said, very useful even if not newly-diagnosed.

Remembering back to those days as a newbie, I was no more aware of the different tests available than their purpose. Complicating matters is society's insistence upon communicating in acronyms and the concomitant assumption that "everyone knows what that means." Here, you supplied the longhand for each acronym... but a newly-diagnosed may find value in knowing each test's purpose. (I know I'm curious!)

So my suggestion

Thank you, Melitta. I've been diagnosed for just over a year as a type 1. Initially I had an incorrect diagnosis of type 2, and I feel like I still haven't got a handle on the disease yet. I feel like I should, but I don't. Thanks for your encouragement!

Dear Melitta,

Thank you so, so much for posting your Top Ten Tips!! Thanks for sending me the link so I would see them quickly!

Thanks for all the effort you put into them, and for the thoughtful way you used language to make what you wrote so accessible to someone who is new to it all.

One item I would offer is that in #8 you refer to a “note from doctor.” Newly diagnosed people probably won’t yet know what’s useful to have in that note.

Thank you again, so much, for this wonderfully concise, clear and detailed list of tips! I’m sure it will help many, many people!

Best wishes,


Thanks so much for this, Melitta! I am still in the diagnosis stage, but it's not looking good, as I had (have) Graves Disease (autoimmune hyperthyroid) and now no thyroid left. Also not obese and not insulin resistant, and nobody in the family has Type 2. All bad signs, I'm told. I'm worried, but reading Bernstein's materials and will stick to my low carb diet.

Great Info here Melitta, thanks :) I was also misdiagnosed, but the diagnosis was that I was type 1.5 AND type 2. I don't think that is possible. Fortunately, or unfortunately, I ended up in the hospital 3 days later which was where I should have been put right away. I don't think my story is that uncommon as I read on youtube about someone else who was diagnosed this way and given metformin when he was in dka.

Hi meee: Glad you found my tips to be good info! I think an important realization for so many of us is that there are so many of us who are adults with new-onset Type 1 diabetes (sadly mostly misdiagnosed, but hopefully getting to a correct diagnosis faster). I was taken off of IV insulin and put on glyburide after being hospitalized in DKA. That was 17 years ago, but still horrifying.

People with Type 1 can develop insulin resistance and have "double diabetes." I think that is somewhat rare but is possible. Have you had a c-peptide test? That would give a clue. Bottom line, just push for the best care possible for yourself--you must be your own best advocate. Good luck!