Type 1 Diagnosis as Adult?


(Ashley) #1

Anyone diagnosed with Type 1 as an adult? I am 31. My mother and son are both Type 1 and I went in for diabetes symptoms yesterday. Doc immediately said I was Type 2 and didn’t want to do any testing for Type 1. I have been checking for ketones and am only showing small, with a large reading this morning and then back to small. Symptoms only started a month ago. Currently waiting to hear back if he will refer me to an Endo for antibody testing. Just wondering if anyone else had any experiences like this.


(joe) #2

@TarnishedAngel hi Ashley,

there is no maximum age for type 1. I was just emailing someone who was diagnosed at 69 years old.

i am a mechanic - not a doctor, but here’s what I learned:

Keytones are normal for anyone who is losing weight. Anytime the body is metabolizing fat, keytones are present in blood and urine. The presence of keytones does not indicate anything except you are burning fat. That being said… if your body does not have enough insulin, then it must burn fat and muscle for energy while glucose builds up in the blood. The only organ that can metabolize glucose without insulin is the brain. Since your son has type 1, I assume you have a meter… what’s you blood sugar?

positive for antibodies means your body is at risk for autoimmune attack on insulin producing beta cells. for a lot of adults, the process of destroying your beta cells tends to be slower, meaning you can make insulin for a longer time. if a c-peptide test shows you are insulin deficient, and your blood glucose is high, then the doctor may start you on insulin or insulin “kickers” which increases the insulin your body makes. if a c-peptide test shows you have excess insulin, they may start you on metformin as a means to help you absorb the insulin you are already making.

no matter the outcome - type 1, type 2, LADA, the idea is to control blood sugar by diet, exercise, and then insulin and/or insulin absorption drugs. it’s more important than a label, imo. good luck!


(carl benwon) #3

Hi Ashley, January 2017 I noticed I was losing weight. Then my new glasses quit working - my eyesight actually got better. Sure, I get thirsty in the winter - I mean with all the central heating, the air’s dry, eh? Eventually, I borrowed a BG meter and blew a 450. Went to my internist and he gave me some lantus (for immediate action) and a script for metformin. That didn’t work at all! So, I went to 17u Lantus/day and all was well for a spell - I mean like 10 months! In the last month or so, I’m now having more typical type 1 conditions. The honeymoon’s over.

Maybe in April or May 2017 I did go to an endo and she did the blood test to show some antibody trait. LADA they called it. No matter, for now it’s pretty classic type 1 diabetes. I’m not taking 8u Lantus twice per day and meal bolus of Humalog in the range of 2 to 5u per meal (carb counting).

I’m somehow fortunate in that our daughter was diagnosed with type 1 when she was 11. She’s now 25. So, as a parent of an adolescent with type 1, I got some early training - kind of already understood carb counting, meal bolus, insulin ratios, glycemic indices, etc.

What bothers me? I just have this on my mind all the time.

I’m 62 - soon to be 63 and in my first year of type 1 diabetes.

f-d


(Dennis J. Dacey, PwD) #4

Hi Ashley @TarnishedAngel,
The oldest diagnosis I personally know for someone with TypeOne was diagnosed at age 74, LADA. I communicate with several others diagnosed in their 40’s and 50’s.

As @joe said the name given to your condition is less important than the treatment you receive. If you are T1D you must take insulin, so if you accurately self-diagnose as TypeOne, shop about and find a doctor who concurs with you.


(anns) #5

Ashley, I was diagnosed with type 1 at age 27 in 1982 with all the classic symptoms - excessive thirst, weight loss, crankiness, sugar cravings and blurry vision. Was a relief to know that I wasn’t going crazy, to be honest! I’ve been on insulin from day 1. As was my grandmother, also diagnosed as type 1 (or juvenile, as it was called then) as an adult in 1946. She was my diabetes warrior and trainer, who died at ago 89. Find a doctor you can trust and work with.


(sneathbupp) #6

I was diagnosed at 51 after hospitalization with DKA. I had lost weight, was very thirsty and urinating frequently. I didn’t even think of diabetes as a possibility. I’m glad you are on top of it by seeking care.


(Diana) #7

I was 40 when diagnosed with T1D. It was a sudden onset with extreme weight loss, thirst that was indescribable so I drank 2-3 gal of water a day, then was in the bathroom constantly - who wouldn’t be if you drank that much water. Since there was no diabetes in my family, I was unaware of the symptoms. I thought I found the 40 year old fountain of youth. I lost 30 lbs over the summer, even though I was enjoying Culver’s raspberry shakes on a regular basis.
At diagnosis, my BG was almost 500 and my A1C was 15. I also had extreme stomach pains from ketones, was very weak, and my eyesight was poor. I was a teacher at the time and couldn’t read the grades in my gradebook.
Now 26 years later, I’m leading a very active lifestyle, started a pump in 2000 and feel generally like a ‘normal’ person.
I’m now venturing into the world of Medicare and had to have a c-peptide test, as was previously mentioned, to ‘prove’ that I’m indeed a T1D. Good grief!!


(Shari) #8

I was diagnosed at 54 as type 1.5 or latent autoimmune by my primary care doctor. My diabetes educator recommended a c-peptide test to see if I was making insulin. I was making minimal insulin so that correlates with type 1. And if you are making insulin you want to preserve that for as long as possible. Keep the beta cells alive! So in the beginning I was prescribed metformin because I was kind of in denial - afraid to start insulin. I should have started insulin right away to help preserve the beta cells by not overworking them. Soon I was prescribed insulin anyway. But eventually I went to an endocrinologist who did an auto-antibody test to confirm type 1. I would recommend a diabetes educator and an endocrinologist. Primary care docs just don’t have all the info to help manage this disease.


(Patricia) #9

I was diagnosed at 60 after hospitalization with DKA, also. I had been misdiagnosed as a type 2 and had gone to 3 different endos who assumed I was type 2 because of my age. I tried controlling my sugars by low carb eating, but eventually it wasn’t enough because in hospital it was found my pancreas wasn’t making any insulin and I had antibodies for type 1.


(joe) #10

taking insulin or not taking insulin has no outcome on your own insulin production capabilities. please don’t think you did harm.


(Brian) #11

I was diagnosed 15 years ago at 35 (my first BG test ever was 750), but wasn’t surprised because I had all of the classic symptoms and my father was also diagnosed with T1D at age 35 (40 years before my own diagnosis – I almost can’t imagine how he was able to manage it without any of today’s technology). At the time, my endocrinologist told me that T1D wasn’t hereditary, but I’ve never believed that. Since then one of my sisters was diagnosed with T1D at age 50. I suspect that adult diagnoses aren’t super common, but you’re definitely not alone. Both my sister and I are managing things pretty well. Hang in there!


(Jm1977) #12

After unexplained weight loss and being sent to an intestinal doctor who told me I ate too healthy and to eat like a pig, a urinary tract infection got my doctors attention with sugar in my urine. My doc gave me a blood sugar tester and told me to test three times a week for two weeks just to confirm. My first two readings were 230 and 450- (eating like a pig was obviously the worst I could have done) hence I went straight back to the doc who gave me metformin and diagnosed type 2. He did say that if I felt as bad as I described to go to ER and explain my sugars high and how I feel so they can test for ketones. I went! After a four day hospital stay, I came home with type one. I read enough online to figure it wasn’t type 2 so went to ER. Glad I didn’t wait as I was slurring my words the day before. If you doubt that you are type two, get tested ASAP.


(sneathbupp) #13

Actually over 50 percent of new T1 diagnoses are in adults.


(karenchq) #14

I was diagnosed at 50. Symptoms included extreme thirst, constant urination, blurry vision and confusion. I was worried that it was early Alzheimer’s disease as I couldn’t remember things that were routine. Extreme highs made me feel lethargic which I assumed was laziness.


(Andre) #15

I was just diagnosed at 51 and I have been experiencing symptoms similar to those described by @karenchq - thirst, memory problems and lethargy being the ones that tipped me off that something was wrong. I had been misdiagnosed at Type 2 and so my family doc was tracking my A1C. I jumped from a 6.2 in November to a 10.4 in May, and that got me the referral to the endocrinology clinic. So, even though my family doc doesn’t know a lot about diabetes (he didn’t know what to make of my high triglycerides), tracking the A1C helped catch my turn for the worse in a timely way.


(Mark) #16

Hi Ashley,
I was diagnosed with Type 1 at 35 years old in 2000. Please take control of your healthcare. It is important to remember that doctors are just like any other occupation. There are good and bad ones. You should find an Endocrinologist that you like and that provides the best care possible. Nobody will know your diabetes better than yourself. The doctor works for YOU- not the other way around. You should politely request (ask) whatever blood tests you want whenever you want/need them. If the doctor gives you “pushback,” ignore it and tell (state or demand) him you want the test done because you need to know know the result. I suggest that you keep a copy of every test result you get. Read, read, read everything you can find about Type 1. The more you know, the better off you will be.
What is a doctor’s business called? A PRACTICE. Yes, that means that means that your doctor should get better with the more patients that he/she sees and the more experiences he/she has.
Hopefully you live near a major city and have (insurance coverage) that provides you access to many healthcare providers.
Focus on the positive and become a proactive team with your son and mom. At times you will need to provide and receive support from your family and they love you more than anyone. Good luck and keep moving forward, one foot in front of the other…
Mark


(Dennis Van Hoof) #17

Joe is correct. T1D is an autoimmune disease; it’s your immune cells that destroy your beta cells, and that has nothing to do with you injecting insulin or not.

Best,

  • Dr. Dennis Van Hoof, PhD, CLC

(Dennis Van Hoof) #18

Hi Ashley,

I was diagnosed as an adult. As mentioned many times below, “Juvenile Diabetes” is an old-fashioned and out-dated term that does not accurately describe what T1D really is: an autoimmune disease that does not discriminate between gender, race, age or whatever. This makes me realize that we can actually learn from this disease in being more tolerant and see everyone as equal people; no discrimination!

Best,
Dr. Dennis Van Hoof, PhD, CLC

[edited by moderator]


(Donna) #19

I absolutely agree that an endo doctor is a must. I was originally diagnosed as T2 even though I was admitted to the hospital for DKA. My primary care physician didnt even think I needed to have a glucagon kit even though i was on insulin. Then I went to an endoc. He disagreed with my diagnosis, did the appropriate bloodwork and told me I had T1. I was 56 at the time. I have been treated by an endoc ever since (11 years now].


(Donna) #20

While being diagnosed this late in life is a real kick in the butt, you were fortunate to have had the previous training in carb counting, etc. Imagine what the learning curve would have been like going into this knowing nothing. I know as I was 56 when diagnosed as T1. I knew nothing about diabetes. Knew no one with any type of diabetes. It does get easier to deal with (in your mind at least). You learn to except the way things are and move forward. Good luck to you on this new journey.