Frustrated!

Newly Diagnosed
1

I am not sure how common this is and am interested how everyone else was diagnosed and if anyone has had a similar experience.

I am a 38 year old male, and started having some health issues around August of last year. I went from being pretty healthy to being in the ICU in one evening.

I started having severe pain in my upper abdominal area and went the the ER. They diagnosed me with pancreatitis, noting that I had high blood sugar levels and high triglycerides. At a follow up with my primary care DR the next week he told me I had type 2 diabetes and started me on Metformin and a long lasting insulin. I was on this regimen for 6 moths and my blood sugar levels did not get any better in fact worse. Finally one evening I stood up and fainted! When my wife found me and I came to, I checked my blood sugar levels and they were over 600. My primary care Dr did not seem to concerned and told me to just up my long acting insulin 10 units.

Being extremely tired, thirsty and in general feeling like crap all of the time, combined with the most recent fainting episode I decided to see an endocrinologist. After doing some blood work, it turns out I have type 1, not type 2. This was 2 weeks ago, and already the new regimen I am on has me feeling much better and my blood sugar levels are coming down.

I cant seem to get over my anger at the assumptive diagnosis of type 2. The wasted time, money and all those months of feeling like shit could have been avoided by a simple blood test. I am not overweight, and from what I am reading now; I had all the signs of being type 1.

How often does this happen? Are people commonly diagnosed and treated for type 2 when they are type 1? Had I not advicated for myself who knows what would have ended up happening. I understand that it isn’t common for someone my age to be diagnosed with type 1, but you would think that one simple blood test would be common practice.

Has this happened to anyone else??

2

Hate to say it, but I’ve heard a lot of these stories. The problem stems from the fact that the vast majority of Type 1’s are 25 or younger at diagnosis, so if someone is older than that, it is assumed to be Type 2. However, we know now through the advent of C-peptide tests that Type 1 can occur at any age. At your age they often call it “LADA” - latent autoimmune diabetes in adults, or sometimes “Type 1.5”. Ultimately, you need to be treated as a Type 1, whatever the heck they want to call it. Adding to the confusion is the “honeymoon period”, which is the months/years it takes for your remaining beta cells to die off, and as a LADA you may end up with some functional beta cells when all is said and done.

The pancreatitis is interesting, because I have a friend that was diagnosed with LADA at age 51 after a bout of pancreatitis as well. That may be a more common scenario than I’m aware of. Glad you are on the right track now…hopefully no more DKA’s in your future!

3

I’ve heard of it happening rather often. A lot of doctors (especially ER docs) practice based on statistics so - statistically - high blood sugar in a male in your age range equated to a likely Type 2. Probably 70% of the folks with high blood sugar in your age group are Type 2’s - it’s just that 100% of you who are YOU are a type 1. There was an antibody test they COULD have done to get an answer on that.

Health care is deeply personal so I know how insane the following advice will sound but: try not to take it personally.

I would recommend writing a letter detailing everything that bothers you about your experience, making sure you have it just right and then giving it a lit match on the barbecue as a means of letting it go (it works for me).

I was diagnosed in 1983 so it’s been a while since I was new at this. You’ll have plenty to learn and have plenty to do to get a handle on your blood sugar as your body gets healthy again. My two cents is to channel that anger and energy into getting yourself the information and tools you need to be healthy.

Cheers,

Aron

4

Hi,

I definitely understand your frustration. I was diagnosed in Jan 2015 at age 28. The ER doc insisted I was type 2, and declined to do the blood tests for type 1 even though I specifically asked. I only knew to ask because my father was diagnosed with type 1 around age 40, and I saw the struggle he went through for a correct diagnosis (he was also diagnosed as type 2 originally, and only after a period of sickness and finding a new doc did the truth come out). I also was not overweight-in fact, I’ve been borderline underweight my whole life, and at the time of diagnosis I was practically emaciated, having lost around 25 lbs in the 3 months I was undiagnosed. The ER doc sent me away with a blood sugar of 300, a metformin prescription, and instructions to call my general care doc sometime in the next few weeks.

The next day, I called like every endocrinologist in town trying to get an appointment, which is hard to do without a referral. I finally ended up losing it and crying over the phone about how I was going to end up back in the ER again if no one would see me. I guess my tears scared them into actually finding an appointment for me. The endocrinologist immediately concluded that I was type 1, did the blood work to confirm, and started me on insulin.

It still scares me to think that, without having watched my dad, I wouldn’t have known to fight and advocate for myself. Since diagnosis, I have met many other adults diagnosed with type 1, and almost all of them have rough stories where they had to fight for a correct diagnosis. One man I met took about 3 months to get a diagnosis, during which time he actually lost his vision. He recovered, but seriously…scary stuff.

So yes, I have thought a lot about this subject. It still scares me to think back about what could have happened. I am very grateful to be in a good place now, and all I can think to do is try to spread awareness that adults can become type 1, too, and it is SO important to just do the blood tests to make sure you know what you’re dealing with before making assumptions! I work in a field where I come into contact with quite a few doctors, and they’re probably sick of me lecturing them about how important this is.

5

I was diagnosed a year ago February at age 51. Coming from a family of Diabetics (two sisters and my Dad) I knew what was wrong. My doctor hospitalized me immediately for T1D but the ER Dr. insisted I was T2. Despite her arguing with the admitting Dr (“If she was a 12 year old girl presenting with those symptoms you would think twice about T1”) when I finally saw an endocrinologist he was shocked at my appearance. He was expecting an overnight middle aged woman since he’d been told I was T2.

As angivan says this T1.5D is the current term for late onset T1D.AS cmanton says if you don’t know to advocate for yourself your misdiagnosis can go on for some time. Sadly there seems to be a huge learning curve, even in the medical profession. The best we can do is make sure that there is education and awareness around the increasing diagnosis of T1D among adults. My Dad had been treated as a T2 and passed away from complications. Looking back he might have been T1.5 and should have been on insulin.

6

A similar thing happened to me. I am very recently diagnosed with type 1. I have an identical twin who has had type 1 since we were 5 years old and we’re now 32. I actually used her glucometer over our birthday to find my BG to be over 400. I have never been so thirsty before, that’s what prompted me to test. After finishing our terrible bday trip I went to see my primary care doc. She suspected I was type 1 since my twin has it, but we requested for the antibodies test to be done. Even after it was confirmed that I am type 1, I was told she wanted to treat it with metformin and long acting. I promptly called back and said I need a script for short acting or a referral to an endo. The soonest I could get in is April and it’s with a NP not a doc, but I’ll take it. it makes me wonder if they don’t understand the difference or just don’t know to treat them differently. Oh and when I was asking about the referral I was told the only way I would likely get in sooner was if I ended up in the hospital in a coma. Awesome. I think I’ll continue to use “borrowed” short acting from my family.

7

I was diagnosed with Type 1 diabetes, though not quite so recently. In short, I was diagnosed on April 9, 1956, and just “celebrated”(?) my 60th anniversary as a Type 1.
At that time I had rather the reverse problem, the family doctor Mom took me to refused to believe I could be a diabetic at all, since I wasn’t an obese middle aged man… Since Juvenile (now Type 1) diabetes wasn’t realized until 1952, just 4 years before my diagnosis, I guess it wasn’t surprising.
I got to the point where my belly pain was so bad I wouldn’t stop screaming I was taken to the ER, and a surgeon was the first 1 to see me. He decided I must have acute appendicitis, so he operated to remove it, and I went into diabetic coma (DKA) on the table. Mom had been asking all along if it could be diabetes, since her grandfather and sister both had it, but the doctors shrugged it off. Dad looked around and found a new pediatrician who HAD heard of such things, and he saved my life. Only needed 1050 units of insulin and 2 days for me to regain consciousness. Also was really rough on Mom, since it was her birthday.
At least you got it in an age when SOMEBODY knows how to treat it. It took me 7 years to gain stability, and that was well before glucose meters were available.
As for getting to see an endo, Mom had a hard time getting me started with one. We moved when I was 7, and she found that a new endo had started a practice where we were in Syracuse, NY. When she first called was told that they would ONLY treat Type 2s. so Mom started a campaign to change his mind. She called the office 1 or more times each day, showed up at the office to ask for an appointment anytime she could, and refused to be put off. after a while the doctor finally accepted me as a patient. We didn’t know until quite some time later that the reason he didn’t want to treat Type 1s was that he had one at home, his daughter, which was why he became an endocrinologist. Couldn’t do much to help her very well, so he didn’t want to experience the same at work…
BUT once he started working with me we went through every treatment plan he could come up with, tried every possible combination of available insulins, schedules and diet adjustments, but nothing worked very well. THEN he decided to test a whole different idea, and started me on 2 shots a day of Globin (now no longer available) medium speed insulin plus Phenformin (an early relative of Metformin) pills twice a day. My control became extremely good, and I had no trouble with stability until the FDA removed Phenformin from the market about 1975. I was 1 of 6 Type 1s that he did that with, and I was a model patient for those years
So yes, it’s frustrating but give it time. Always use any resources you can find to learn what to do and keep at it. Eventually you will know what do do for any situation.

8

In Oct 2014 saw my primary doc for unrelated cause and he decided to do A1C-it was 6.7. Got started on Metformin- didn’t work. A1c went to 12.2. He just increased Metformin and added Januvia and wouldn’t listen to me when I suggested insulin. I self referred to endocrinologist and was started on insulin pen immediately.
I don’t think my doc really did any harm-he just didn’t know.
I’m more upset about having T1D than anything because it seems to consume my whole life. And now on pump. Best thing you can do is have good support system. Diabetic Ed staff at local hospitals are good resources.

9

Hey! My name is Alyssa and I’m 19 years old. I went to my primary care physician a few weeks ago for a physical when they noticed my blood sugar and A1C were super high- over 500! The PA diagnosed me with type 2 after another blood test and prescribed me Metformin. This was a total shock to me, as I had no idea I was even at risk. After doing some research on my own I wanted to reaffirm the diagnosis, as I am 19 years old, 120 pounds, and very active. It came back that I had type 1 after all! I think anyone should request the antibody panel to make double sure the correct disease is diagnosed! Hope you’re doing well, and so sorry this happened to you! Best wishes :heart:️

10

It’s ok and i’m doing well i hope you are doing good. I’m 19 years old and i was diabetic almost for 3 years well its not bad being a diabetic. keep smiling be happy :slight_smile:

11

Unfortunately I think a lot of people with LADA (type 1.5) etc. have a similar diagnosis story and are often diagnosed as type 2 initially. However, in my case I was overweight at the time of my initial diagnosis and so when I was told I had type 2 diabetes at age 35 I guess I initially just accepted it.
For several months before my diagnosis I kept coming up with seemingly (to me) logical explanations for the symptoms I was experiencing. Eventually after losing 20-25 lbs. without trying I began to realize that the symptoms probably meant diabetes. I finally saw my Primary Care Physician and as I had suspected he confirmed it was diabetes when my AC1 came back at 12.7%. I too was prescribed Metformin by my Doctor and saw the diagnosis as a wake up call so I changed everything, got in shape and maintained a very strict diet, and for almost two years my A1Cs were pretty good, usually between 5.7-6.4%.
That is until I started getting the symptoms again earlier this year. I was at my wits end, I was doing everything right and I was getting worse again. It seemed to me the only thing that made sense was that I had type 1. I had only been taking a half does of Metformin the whole time so initially I was told to just up my dose but that didn’t work so eventually my Doctor had me tested for antibodies.
I was unaware that there were three separate antibody tests so when, after a week, I had seen on-line that two had come back negative, I messaged my doctor and expressed my relief that it wasn’t type one. He then messaged back indicating that it was indeed fortunate and never mentioned a third test was still pending! Then about a week or two later I got the test results in the mail and I saw three tests instead of two and the third test was positive for Type 1. I quickly looked on-line because I didn’t remember seeing this result there, and sure enough it had posted 5 days earlier and I was never notified! So then I had to call in and make an appointment with my doctor since he had apparently dropped the ball. He put me on Lantus and I expressed that I wanted to see a specialist. Unfortunately at that clinic they didn’t have any endocrinologists so I had to get an appointment with an internal medicine doctor. Needless to say that the three week wait for that appointment was a waste of time and eventually I did get a referral to an endo at another clinic but that was another 5 week wait. So I was managing my Type 1 diabetes with only Lantus for two months! My doctor just told me to keep upping my Lantus dose every few days. At one point I was almost scared to eat and I was exercising all the time to keep my blood sugar down. Finally I got a prescription for Humalog and am now awaiting word form insurance on getting an insulin pump.

I am really not sure why there is such a big hesitation to test for type 1. From what I’ve read an estimated 10% of type 2’s could actually be type 1.5 so why not be sure. I think that General Practitioners need more education on the different types of diabetes and how they preset since they are usually the ones having to make the initial diagnosis.

12

Hey man. I feel for you. For me it was much easier i think. My mom noticed that i was drinking huge amounts of water for no reason. My dad was diabetic. So he had glucose reading machine. My reading was showing 300. So i immediately went to the doctor. I was 120 kg and 24 years old. The doctor just looking at me said i have type 2 diabetes and started me on tablets immediately. It was my father who said insisted that we do the test for type 1. The doctor told me he is sure its type 2. The results came back saying i have type 1. Luckily because my father also went through the same thing he was able to advise me a lot. I feel doctors in diabetic care follow follow steps. They dont really try to understand the patients perspective or advice him on the insulin intake based on his lifestyle. They all say the same things. Most people i know who are diabetic sort figure out everything by themselves.

13

I was diagnosed with Type 1 when I was 38. Perhaps we just have better doctors in the Princeton area, but my primary physician knew right away. He sent me to the hospital to be treated for Type 1 (my BG was almost 600) and when I was released referred me to a Type 1 endocrinologist.

14

Hi jason.
Sorry about your mis-diagnosis. I can totally understand your flustration for sure. I’ve had T1D for 41 years and have had a few myself. As is the case in all walks of life…all doctors are not good ones. As difficult as this may be, I suggest you put the past behind you and move on…there’s nothing you can do to change it anyways. Concentrate on your correct diagnosis and taking care of that. The most difficult aspects of living with T1D are the ones a non diabetic would never know about or understand, like your mis-diagnosis. Those among us who fare best move beyond the flustration and stay positive to the best of our ability. Good luck with everything my brother. Mark

15

My story is similar to yours, but not exactly. I am a 30 year old woman with no known health issues. I had come down with flu-like symptoms at the beginning of December 2016. I went to the ER and doctor said I had bronchitis, sinus infection, possibly the flu and low potassium. I was given z-pak antibiotics, steroids, and potassium pills. Fast forward about 3 weeks when I was going to my PCP for a potassium check. In these 3 weeks, I had extremely thirst, severe vision change, and was so lathargic, but I just blamed being sick for this . While at my normal doc appointment, they found ketones in my urine and my blood sugar was almost 400 (with no food for over 12 hours.) Needless to say, they said I was diabetic. Doc wasn’t sure if it was type 1 or 2 so I was given Metformin and a glucometer and was told to check blood sugar. Doc called the next morning to check on me and decided to get me in the hospital.

I was sent to the hospital on December 20 to get my sugars under control because they were consistently in the high 300’s. This is where I feel I didn’t get adequate care. Yes, I was given a fast-acting insulin drip which got my glucose numbers down, but not for good. Immediately my sugars were back in the 300’s. Turns out I was in DKA and still spilling ketones in my urine. At first hospital doctors said I was Type 1, since DKA is more common in T1. Then the next morning, the doctors said I was type 2 mostly because of my age and no family history of type 1’s…they just presumed I was type 2 without further testing, but weren’t confident enough to put anything in writing. I asked if there was a test or something to be certain of the type I was, and all I could get out of them was “yes, there’s a test, but we are going to treat you the same at this point, regardless of your type.” I couldn’t believe that! I understand the treatment may be the same at this point in time, but I want to know my diagnosis…seeing how this is going to affect the rest of my life!!!

Before leaving the hospital, I did finally have blood drawn for the antibody test…only to find out almost 2 weeks later that the test was cancelled for some reason. A reason I still don’t know why to this day. I’m assuming the doctor decided he was fine with me being a “unwritten/undiagnosed” type 2. The hospital staff gave me very little knowledge before leaving, other than take 10 units of Lantus at night, and then follow up with my PCP. My sugars were still very elevated when I left, but since I wasn’t DKA and apparently my ketones were lower, I was released with no real treatment plan of what to do when my sugars continued to be in the 300’s.

I feel your pain when it comes to people just assuming you are a type 2 because that’s the most common diagnosis. It seems doctors assume you are overweight and unhealthy, which is the stigma of type 2.

It took over a month for me to get an answer as to what type I am. Even now, there is still some question because my antibodies are negative. Luckily, my endocrinologist was really interested how my symptoms came to be, along with lower insulin and c-peptide levels with high blood glucose, that she was confident to diagnose me type 1. She thinks we caught my diabetes almost instantly that I haven’t produced enough antibodies to be detected in the tests, or I could be the 20%-30% of type 1’s that don’t produce antibodies.

Sorry for my long story, but I feel I can relate to the unknown and questions that you had to go through. That period of not knowing and it feeling like nobody else cares to know…it’s hard. I have been lucky to have a great endocrinologist that stood up to make the hard diagnosis decision that no other doctor did. It could have been a lot more wasted time and money on a type 2 diagnosis that wasn’t accurate.

16

What REALLY needs to happen is that GPs and other kinds of doctors, dentists etc, need to learn that we DON’T get Type 1 ONLY because we have Type 1 relatives… in fact only 7% of Type 1 diabetics have a known Type 1 relative. This comes from a study done several years ago showing that. It’s also interesting that Type 2s were also found to be the ones that almost always had a Type 2 relative. As usual medical science got it backwards!