Hi: As many of you know, I write a lot of blogs on misdiagnosis of adult-onset Type 1 diabetes (adults with new-onset T1D who are misdiagnosed as having Type 2 diabetes, based on age not etiology). Here is a link to one of my blogs. I am in the process of writing a new blog about new-onset T1D in adults that is rapid onset (not slow onset like LADA), and wanted to hear from others about their experiences when first diagnosed. How were you diagnosed? Were you correctly diagnosd? Were there any resources available to you? What do you want medical professionals to know about adult-onset Type 1 diabetes? Thanks in advance for input!
yes, I know. I read about this all the time. What the heck is new onset Type 1 diabetes?? You asked about our experience so I gave you mine. I am sorry folks are mis dx'd, and I don't have answers to fix it. Maybe another blog will be the answer!
In all the medical journal reading that I do, and in reading all of your stories of adult-onset Type 1 diagnosis (or misdiagnosis), what I find to be extremely sad and very disturbing is the frequent lack of compassion shown towards those with adult-onset Type 1 diabetes. Most of the medical community never considers what might be best for the human being with Type 1 diabetes. Kids who acquire Type 1 are shown great compassion, and the disease is acknowledged to be profoundly life-altering and very serious. They even get fun camps with their peers. Adults? Not so much. There are exceptions of course. The new ADA/JDRF Type 1 Diabetes Sourcebook (Dr. Anne Peters, editor) has compassion (and lots of great information for adults) in abundance.
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You're right about the differences between the services for kids and adults. I know a CDE who has a new dx'd patient, 19 years old and he can't access the social services and psychologist services that are offered to patients up to age 18. Kinda like aging out of foster care...
A lot of my symptoms were similar to yours Sarah with allergies and inflammations etc.
My story is similar as most of these, I was feeling tired all the time, eating huge portions as I was so hungry, yet still losing weight drinking sweet tea as if I held stock in Lipton. Peeing so much that I was always aware of the closest bathroom.
I have always been an athlete, so I was of a "normal weight" 5'9" tall around 180 lbs.
I was riding a mountain bike 3-4 times a week, and generally pretty fit. My recent wellness screening over the previous summer showed a good fasting bg number.
I finally went to the eye doctor when my eyes went blurry upon waking up one morning during my Christmas vacation when I was 42 years old, 3 years ago.
Since I am a man, I still waited a week to go see the eye doc, until I began driving for work in January and realized I was a danger while driving to the rest of the population, with the blurry vision.
My wife(an RN)called and made an appointment with the eye doc I had gone to a couple o times even though she suspected diabetes. I could not accept that, as I was very active, for the most part ate very well and was in great shape.
The Eye Doc said "you probably already have an idea of what this is," I did, but still didn't want to believe it. "Your eyes are fine it is most likely Diabetes, you need to make an appointment with your GP".
So off to the GP, She saw me quickly, within a day or so, and had lab work done then sent me home, with instructions to call back for the results the following day.
I complied, and called back at the appointed time, and was told the Doc had not looked at the labs yet and to call back after lunch.
Within 10 minutes of that call ending, I received a call back from the GP. office requesting I come to the office right now.
I complied, and got the news, blood sugar 500 something, fasting an A1C of 10.7, my wife and I were floored. The Doc said she could handle my diabetes care but suggested I see a specialist, an Endocrinologist.
We set the appointment with the Endo, "the best Endo in the county", and went home with a script for 500 mg of Metformin and meal/snack diet for diabetes patients, which the doc amended with higher carb counts for meals and snacks due to my exercise regimen(90 grams of carbs per meal and 35-45 grams per snack).
I work for the local county school board, and we have an excellent wellness program, so I was able to leave the dr. office and head there for the wellness center for a new meter and some diabetes training. This was invaluable, as the CDE on duty was very sharp, she took one look at me asked a couple of pertinent questions and suggested I have testing performed to confirm her suspicions of Type 1. My wife and I also could not believe a type 2 diagnosis with my weight and physical activity. I got a new meter and did my first finger stick in her office, it was over 400 at the time.
I went home and immediately complied with the diet plan provided. I had already lost 15lbs. from my peak weight and with increased exercise and reducing the carbs intake to less than 60 at meals and 20 or less for snacks I lost another 10 lbs. before I saw the Endo in 3 weeks.
My numbers were looking better and the finger sticks were steadily showing improvement because of the reduced food intake and maybe even the Metformin a little. I was officially "Honeymooning", of course I did not know this at the time.
When the appointment finally came around to see the Endo, my bg's were looking pretty good and I was feeling a little better.
We asked about testing for type 1 and were told, "there is no need you are type 2".
My wife insisted, and the Endo very reluctantly agreed and sent me to the lab for another blood draw.
I received a letter in the mail from the Doc, about a week or so later, yes a letter in the mail arrgh!
" You do indeed have the antibodies SUGGESTING that you do indeed have type 1 diabetes, I don't THINK this changes anything, keep taking the Metformin and let me now if anything changes". (emphasis added by me)
This letter reached me before the first letter he sent with his "professional" diagnosis that I probably was type a 2 diabetic, pending lab work, which arrived in the mail the next day.
I continued to improve as I followed the diet and increased my exercise and when I saw the Endo in three months I was looking really good weighing in at 148 lbs. and quickly wasting away.
I asked if I should keep taking the Metformin and was told yes it's working.
Then he suggested an additional Med like Byetta, the weight loss must not have mattered to him.
The competitive nature that I have, and wanting perfect A1C and bg numbers, I reluctantly agreed a couple of weeks later, and started the 5mg dose of Byetta.
This was great, I finally was not so hungry all the time and my numbers were just about perfect. I quickly lost more weight and reached an all time low since high school, 133 lbs. from a high of 188lbs. 6 months earlier.
I asked if maybe I should quit taking the Byetta and the Metformin again, and the doc said yes stop taking the Byetta but continue with the Metformin.
My A1C was checked 4 times in the first 5 months and by my May 21st 2011 visit I had achieved an A1C of 5.2 after having a 10.7 on January 6th 2014.
I of course was starving to death and very week all the time, but my numbers looked good so I was happy.
I once again asked if I could stop the Metformin and was told no you need to keep taking it.
I went a couple of more months with the "best Endo in the county" and scheduled another visit, in the mean time I quit the Metformin and my weight rebounded slightly but my numbers were still good with an A1C at the next appointment of 5.8.
I again asked if I could discontinue the type 2 meds and was told no you need to keep taking them. I then told him I had quit taking the Metformin 60 days ago and he said, and I quote, "that's okay they probably weren't doing anything for you any way", this was the last straw, I started searching for another Endo.
Tudiabetes was awesome for this, Melitta, helped me know what I was looking for and another Tu member told me who fit the bill in the county.
I switched to this Endo, who is a Type 1 Doc, and patient, yeah he gets it:).
He asked do you have a script for insulin? I did not.
I had an Insulin pen and Humalog, in a refillable pediatric pen so I can do 1/2 unit doses as I am hypersensitive to Insulin, before I left from our first visit.
He spent near on an hour with me that day, and I am so grateful for him.
He scheduled some more labs and ruled out Hashimoto's and did the full array of Antibody testing, he is leaning toward LADA not rapid onset, which is likely how I survived the first 9 months with the previous Endo.
I want so much for these "Old School Endo's" to be required to rule out Type 1 with patients who present as active and thin.
I have a coworker who still goes to the first Clinic I went to with a different Endo, who started going there because of Hashimoto's. She suddenly developed diabetes and was told due to your age you are a Type 2 period, end of discussion. The doc will not even do the antibodies test, even with the Hashimoto's diagnosis. The Doctor should be banned from Endocrinology in my opinion.
My coworker still thinks the doc knows best and since she has lost weight and her numbers are good she is sticking with the clinic. I just pray when it all goes south for her, they will catch it in time to avoid permanent damage or worse.
My numbers are slowly, steadily creeping up, and I cannot imagine how frustrated I would be if I still thought I was a type 2, and all my exercise and diet were no longer working.
I completed 6000 miles on my road bike and mountain bikes last year and am in the best shape of my life. 148 lbs. and very fit.
I think that many of us (both T1 and T2) suffer from misdiagnosis and mistreatment. Although I am a T2, I became concerned that none of the oral medications led to improved blood sugar control and I entered into a year long conversation with my GP about my diagnosis and starting insulin. Although she was educated in the last decade some of the things she said totally destroyed my confidence in her ability to diagnose and treat my diabetes. Upon asking about whether I might be T1 she replied that "T1 was only diagnosed in the ER and all T1s present with DKA." She then told me that in her decade of practice she had never diagnosed anyone with T1 (apparently because she was not competent to diagnose T1). When I asked for an antibody panel specifically, she repeatedly refused. Finally, she admitted, she didn't know how to interpret the results. This doctor graduated in 1999 and completed her residence in 2002 and she never was trained to properly diagnose diabetes. Today, nearly a decade after my initial diagnosis and visiting a number of endos and having all the tests, I still don't have a specific diagnosis. Sometimes, even if the doctor is well trained and competent you can't get a specific diagnosis, diabetes is just complicated.
I believe you can certainly receive the proper type 1 diagnosis with the panel of antibody tests. Miss Melitta correct me if I am mistaken.
After a decade of therapy there may not be any beta cells left, and if there are none functioning when the antibody panel is obtained then there will be little to no detectable antibodies. This is part of the problem with not getting it done up front.
In my opinion the full antibody panel and C-peptide should be done on EVERY new diagnosis so that this confusion and lack of effective and timely treatment can stop! It is going to be less expensive in the long run to obtain a complete and correct diagnosis, with correct therapy than to pay out for care of all the complications caused by long term inappropriate treatment.
Would a cpeptide test help in this instance?
I believe I recall reading somewhere that depending on how many of the different antibodies you test positive for may help to determine the length of time before complete Insulin dependence as well.
For autoimmune diabetes (which by definition is Type 1 diabetes), the full suite of autoantibody tests will "get" about 94% of Type 1 cases ("new kid on the block" autoantibody zinc transporter bumped the percentage up to 94%). Then, some small percentage of people with autoimmune diabetes will be positive for T reactive cell but autoantibody negative, but the T reactive cell indicates that an autoimmune process is occurring. I think T reactive cell is only tested in very few clinical studies, I don't think it is a widely available lab test. So yes, autoantibody testing (best done at diagnosis as 2hobbit1 points out) will catch most Type 1 autoimmune diabetes. But things are always complicated--it may be that there are still autoantibodies that have not been discovered. And finally, some forms of monogenic diabetes (MODY) are insulin requiring, but MODY is so rarely tested for (the testing is only done in a few specialized labs and is very expensive. Hence, the director of the Kovler Center in the U.S., which is the go-to MODY center, says that 97% of MODYs are misdiagnosed).
C-peptide is a way to measure how much insulin you are making at the time of the test. If you have no beta cells you will not have any c-peptide. If You are insulin resistant(T2) and still making your own insulin then your numbers will be elevated, since it takes more of your insulin to do the job. If you are a T2 who has hit pancreatic burn out and are using basal/bolus Insulin, then it will be low like a T1 is at presentation.
If your co-worker is not using insulin yet, it may be a way to help distinguish what she truly is, but if your getting her to get the C-peptide, I would push for the full antibody panel as well, GAD, ICA,IA-2A, and Zink transporter 8 antibodies (ZT8A). If you only do the GAD, at lest 10-20% of T1s will be missed.
Yikes, I'm shocked by this story. Many of us adult Type 1's were misdiagnosed simply due to age (I was misdiagnosed at age 58), but to keep giving you type 2 treatment after establishing you were actually type 1....yikes! I was living in Guatemala at the time and my third world doctor didn't really understand why all the oral meds had stopped working after 15 months but he DID see the evidence of his eyes: I needed insulin!
I know now that I have had a similar experience with reaction to carbs for a decade or more, I have had unverified hypoglycemic events since before my second marriage at the age of 27, and sudden mood swings as well as other high glucose like symptoms.
Sleeping poorly at night falling asleep during the day fatigue and so on.
I am 38 months from my T1D diagnosis and am having stinging and burning in my feet, my current(awesome Endo)suggested it might be my exercise regimen being too intense because neuropathy takes decades to develop.
I think I have been suffering with inconsistent Endogenous Insulin production for most of my life. I never went to doctors because of an immune system that fought everything off in a day or two, I was only sick enough twice since childhood to reluctantly go to a doc. Even then with one shot of antibiotics I was better in less than 24 hours.
My father who I do not know and only spoke to a couple of times made a passing comment about his own Pancreas problems but did not elaborate, but did say he didn't have diabetes. I imagine his diagnosis is not complete/correct either.
I was denied Insulin for 12 months.
Well that's quite a success rate don't you think, 3% properly diagnosed.
I was properly diagnosed over 40 years ago at age 19, with all of the classic symptoms. I was never told what my glucose was at the time I went to hospital.
Every time I read a story of T2 misdiagnosis here on TuDiabetes, it breaks my heart and also makes me angry.
I recently shopped for a new endocrinologist (I moved to a new state and couldn't keep flying to see my wonderful endo of almost 20 years) and was frankly shocked when a NP insisted I was T2 strictly based on my age ...
So here is what I would like health care professionals to know:
- Diabetes is a chronic disease category that has multiple types.
- While approximately 90% of diabetics have Type 2, taking the time to correctly diagnose each patient is critical to the patient's immediate and long-term health.
- There are no age cut-offs for diagnosing the diabetes type. Children can have Type 2 and adults can have Type 1.
- Insulin is required to successfully treat Type 1 diabetes and some Type 2s.
- Prescribing Insulin is NOT an "end-stage" treatment protocol.
- Diabetes is a chronic disease that requires a motivated, engaged patient. Approach each patient with a positive mind-set and establish goals appropriate for each patient.
I would also share some of the CDC data that others have presented in this discussion.
Thank you, Melitta, for being a champion in this fight!
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My experience of being diagnosed with T1 (or juvenile onset as they called it then) at the age of 28 were rather different.
I had the usual symptoms (extreme thirst, very rapid and severe weight loss, tied to the loo...). I had a degree in Biochemistry and a grandfather with diet controlled "adult onset diabetes", so I walked over to the ER fully expecting to be told to lay off the regular coca-cola and stay away from jam. I didn't expect to be admitted immediately and injected with insulin and I didn't anticipate being told that I had what they called "late onset juvenile diabetes" and that my life was going to undergo some changes....
There were no antibody tests in those days, so I should be grateful to be correctly diagnosed.
Joel
Thanks, Mike, for this great input. I would also add that Type 2 diabetes is less than 90% of all cases of diabetes, probably ~80% (still the vast majority) since there are so many adult-onset Type 1s who are misdiagnosed. From the first study that looked at autoantibodies in adults, published in the Lancet in 1977 (11% of "Type 2s" were autoantibody positive and by today's definition would be correctly diagnosed as Type 1 autoimmune diabetes) to the UKPDS (10% of "Type 2s" were autoantibody positive) to a recent study from an Alabama clinic (14% of "Type 2s" were autoantibody positive), there is a huge group of Type 1s who are not being included in the Type 1 stats.