Why Do Doctors assUme Diabetes Type?

Type 1 and LADA
1

I am just a possable LADA at this point, never tested for antibodies.

They just ASSUME I must be a type-2, was too old when I landed in the horsepital via meatwagon for diabetes. I had been having problems, obvious to everyone it seems BUT the doc I had and even ER. My boss at work had asked me to see a doctor, I was napping on breaks and lunch just to struggle thru a shif etc. MY own famdoc at the time refused to see me for follow-up, just a sore throat he said. He ahd SICK patients that needed him.

The morning I saw the company's doc, he gave me a clean bill of health and back to work in time for lunch. That evening after dinner, sat down with my wife to watch TV. A couple sips of Coke and my wife called for an ambulance. It was off to ER and I was admitted. When the company doc came in, he YELLED at me, WHY is you blood sugar so high & shoved a ADA diet in my face. He ASSUMED I knew I was diabetic even tho despite possable past issues, I did NOT even know what diabetes was.When I ahd my follow-up, I felt bad, even complained to him about how I felt. He did not check my blood sugar at all *his office DID have a meter', said it was not working that day, and told me I was NOT following the diet.

Next doc, after a move assUme'd my diabetes was mild. one day my wife caleld about my being so tired, almost in a stupor. He blamed it on her! I ended up in the hospital for what turned out to be cancer surgery. They did not control my blood sugar well and my fam doc said my diabetes was worse than he thought (assUme'd). He said to me sometimes the cure is worse than the problem and avoided doing anything about my diabetes. I was not expected to survive 12 months so I guess he felt why bother.That was 1982 and I am still kicking.

Another doc that I was sent to after the surgery took charge and sent my wife and me to diabetes classes. I started insulin and felt so much better.

Over the next few decades, it was get yelled at when things went array, must be MY FAULT, most of the time. Told to do this do that and assUme this and assUme that. I was in vocrehab, and isntead of checking out my neuro problems.. yep. they assUme'd that since I was diabetic my neuro problems were due to my diabetes. Of course NOW after a eye doc did not assUme anything, and eventual testing discover I also have long-standing MS,an autoimmune disease which means I am a higher risk for other autoimmune issues.

Over 3 years ago I got refered to the local hospital based diabetes center. the first endo just looked at me and said TYPE-2, no questions, no testing, changed my insulins and set my doseage way too high for me, almsot double what it should have been. That end left the clinic later that week. I chose the best endo in town at the center for my next endo. Still NO TESTING, I thought HE would answer the long standing question. His only response was, I was already on what he called the GOLD STANDARD, MDI with Lantus and Humalog.

I would have thought, that when a new (to them) patient came in they would do a complete and proper work up.I had to learn on my own how to figure my BASAL needs, carb ratio and correction factor. The center did bring up the issue asking if I was sure I was not a type-1. How was I supposed to know? Should that not be THEIR JOB?

I must admit, KNOWING which TYPE I am will not make a treatment difference, I am already on the Gold Std, but would it not at least HELP to have a proper CORRECT dx either way?

Who do doctors work for anyway? The ins comapnies? I PAY PREMIUMS, it's MY MONEY in the end, NOT the ins company's. Does everything boil down to the almighty buck?

I wonder who benifits when doctors assUme, instead of testng? Because I am LABELED as a TYPE-2 (which does not fit well) I get looked at and treated different by many docs. My endo, does treat em better, he often notes how DIFFERENT I am compared to most of this patients. But alas,, NO type testing, no antibody test after over 3 decades of diabetes. Even after KNOWING I have MS another autopimmune disease and past history of thyroid issue, not currently treated, (but may not be an issue now)

Gomer..... asks, Why do doctors assUme so much?

2

I really wish I had a good answer for you. Practically the same happen to me for a LONG time. Was constantly looked at and told I was not following “diabetic diet” or exercising as I should be. Was also accused of not taking my oral meds as prescribed. - My sugars and A1c and cholestoral continued to climb. My family doc had me on such a high dose of glucophage and other diabetic meds that it was starting to give false readings on my kidneys and constantly talked about dialysis and possibility of kidney transplants. Scared the fire out of me. He sent me to a specialist -he did all kinds of tests on my renals and could not figure out why I was sent to him.–nothing wrong–. Finally, I asked my family doc if it was not advantageous for me to be referred to an endocrinologist. He was reluctant to send me AND copies of my records. I insisted. I went, he did several testshe was my savior. It took literally a year to get me turned around. Had to ween me off everything I was on and was put on insulin injections almost immediately. I still have ups and downs, but he works very closely with me. I still see him once every 4 months (it’s been since 2005). He calls me his ‘unique patient’, but is very good and truly concerned.
My family doc also sent me to the diabetic center – which was a crock and waste of time. I know when, how, and what I can and cannot eat. I am no where near overweight and definitly not a couch potato.
I don’t know if some doctors just don’t really care, or if they are ‘run’ by insurance companies, or maybe get kick backs from either the insurance or drug companies. But I finally did transfer all my medical records to a physician (internal medicine) to whom I can trust and who listens to me. I see him for my medical needs. As for my diabetes, I see an endo. I do not go on any medications without first researching. Do not ever trust everything that comes out of a doctors mouth. You have to be your own advocate. I have learned that the hard way.

3

I just wrote a blog (see my blogs) about why doctors continue to insist upon diagnosing all adults as having Type 2 diabetes, when new-onset Type 1 diabetes is so common in adults (and SO MANY are misdiagnosed as having T2, often with disastrous consequences). Part of the problem is that the leading diabetes organizations fail to require appropriate diagnostic criteria: diagnostic criteria for diabetes mellitus is based on fasting plasma glucose without any differentiation between Type 1 diabetes, Type 2 diabetes, MODY (maturity onset diabetes of the young), and other forms of diabetes. The gold standard for identifying if a person with diabetes has Type 1 autoimmune diabetes is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies), yet this is not part of the diagnostic criteria. Doctors will frequently say that the testing is too expensive, yet the out-of-pocket expense is $471, and that cost is a tiny fraction of the expense of DKA treatment or any diabetic complication. It is actually quite easy to diagnose a person who has autoimmune diabetes.

4

Hi Melita------

-1- I AGREE…you are so so right that EVERY diabetic should be tested ASAP as to TYPE.

-2- LABELS are so so wrong so often. We badly NEED NEW LABELS to replace the offten inaccurate PIGEON holes we are stuck with, not to mention the assUme’s that go with the antiquated labels.

When I was 13 a dentist commented the 2 cavities I had rotted from the inside, not outside. That should have been a clue right there. I had a BS problem when I was 14 (barely), probable pancreatitis. I was told I would end up on shots, like another kid in the hospital who was diabetic.

When I was in the Navy, another possable pancreatitis at age 22. I was told if I passed a urine sugar test the following morning I could “FORGET” about it, like it never hapened.

One time I took a glucose tolelrance test, by then I had already been Dx’d w/diabetes but not on anything. The doc said I passed, no problem and NOT diabetic (despite sugar in my urine). For the next several days I was spilling +3 +4 of sugar per urine test-tape. I did everything, diet, rode bike several miles every morning you name it.

Autoimmune levels VARY, that could easily explain WHY thing go haywire with LADAs. I know my psorasis varies / fluctuates with my autoimmune response levels. My autioimmune Multiple Sclerosis label is RRMS, Relapsing Remitting Multiple Ssclerosis. Because it varies with autoimmune activity as well How about RRDM for Relapsing Remitting Diabetes Meletis (sp). MS Remissions can vary in mount fo recovery between relapses. I think I am beginning to understand my diabetes more from learning about MS (no choice).

The MS labels are not based on AGE or random labels, they are based on HOW your MS behaves. RRMS, SPMS is usually a later stage following RRMS where it is more progressive, and PPMS is Primary Progressive where it get bad from early on, in a way parallel to what most people think of as Type-1 diabetes.

Think about it, even one trip to ER cost a lot more than $500.

** Manny How about promoting NEW LABELS based on real meaningfull Dx type testing?

Gomer Self Dx of RRDM (LADAL?) and his Tupence 4 2 day.

5

Doctors don't assume Type 2. Yours did.

My doctor didn't assume anything. When it was initially determined that I had diabetes, he sent me to the E.R. where I was put on insulin over a few days to get my BG under control. He ordered a rash of tests and then diagnosed me with Type 1. He then referred me to an endocrinologist.

6

Sadly, the past 12 months have been a lesson in the fact that most docs blithely go along dxing patients on auto-pilot, assuming that because, statistically, 95% of cases they see will be T2 virtually every case they see will be T2.

As a result, consciously or unconsciously, they turn their "radar" off and work. Or, maybe they never had any radar. They are scientists and many scientists are so data-driven that they do not have much in the way of intuitive thinking skills. So, unless they are hit on the head with data that stand out or are trained to look for anomalies...all that will stand out in their minds is the protocol that they have burned in their brains. And for now that is:90-95% of adults are T2.

I learned about this not once but twice. After removal of half my thyroid a year ago, my body did not react the way 90% patients' do. I apparently needed a different kind of replacement hormone that most people. Long story...several doctors denied my symptoms were even related to my thyroid (despite the fact that I was FINE before surgery andsymptoms appeared 3 weeks later and were all symptoms of hypothyroidism). Eventually, the bloodwork results caught up with the symptoms and I find a doctor who prescribed a different treatment that worked. However, it took a great deal of persistence and research on my part and an Endo who understood that there are 5% of people who needed something else. And I spent 9 months of 2010 feeling horrible.

Then the high BG diagnosis. Of course, the PCP pronounced I was T2. By this time, after the previous experience, I knew to do my own research. I won't bore you, but with my family history (Dad, who died 10 yrs ago, was an Adult onset T1) and my own medical history (not heavy, no metabolic syndrome, personal hx autoimmune disease), I suspected LADA.

I got myself back to the Endo. Well, it's early days. I am really very lucky and we caught this incredibly early via a routing physical with my FBS barely inching above normal (105). So far, I am not GAD positive, so I'm categorized as an insulin deficient Type 2. But my C-peptide shows that I am not insulin resistant. So, I think the jury is still out.

To recap...the main thing that I learned was that I can not leave responsibility for health care in the hands of the professionals. That may have been the case many years ago...but, sadly, no more. Perhaps the system has changed and Docs no longer have the time to take complete responsibility anymore. Or maybe these flaws were always there. But, I'm not willing to sit back and let the Docs make these kinds of mistakes now that I have access to the kind of info I do on the internet. I am smart and I have all the time in the world and the interest to research my disease...so I can be extremely thorough! At this time, I think it is the most prudent course of action.

7

Hi April: Welcome! There are many of us here who were diagnosed with Type 1 diabetes as adults. Lots of us were initially misdiagnosed as having Type 2 diabetes, a few were lucky enough to be correctly diagnosed at the outset. If your dad had Type 1 and you have another autoimmune diabetes, it is quite likely that you have Type 1 autoimmune diabetes. Take a look at my blogs where I address lots of the problems of adult-onset Type 1 diabetes/LADA. Also, the statistic of 90-95% of all cases of diabetes are Type 2 is not accurate, because that statistic includes adult onset T1/LADAs in with Type 2. According to John Walsh, author of “Pumping Insulin”, about 5-10% of all cases are rapid-onset Type 1, about 10-15% are slow onset Type 1/LADA, and about 75-85% are Type 2 diabetes (my apologies to those with MODY, who are estimated to be 1-2%, but are probably a higher percentage than that, due to misdiagnosis). Finally, early initiation of exogenous insulin therapy is the preferred treatment for ALL people with Type 1 diabetes, including LADAs. Something to consider. Best of luck!

8

Hi Melitta! You always are really helpful and informative about LADA, but I have to nitpick just a bit here:

I agree that it was good to have the correct diagnosis right away, but most of the adults that I know who were correctly diagnosed with type 1 (myself included) were in diabetic ketoacidosis and often got their diagnoses in the ER when things got really bad. I was scared and felt that I was about to die when I showed up at the ER blacking out. Perhaps we are the lucky ones, but I wished that I could have avoided the months with an A1c over 12. I don't know whether my onset was actually faster than others or whether I just missed all the signs.

9

Thanks,Melitta...I'm struggling with how quickly to cry "uncle" on the oral meds. I feel as though I am watching a train wreck in slow motion.

My morning FBS is starting - ever so slowly and gently - to climb...it is a slow progression...first back up over 100. Then in a few weeks up over 110. And then a 125 reading one day. It is 2 steps up and then 1 back...so not steady one way...but the progression is clera.

So, when do I pull the emergency cord and call the endo and say I am seeing a trend? I think when I have several data points over 125 at fasting in the morning. That, after all is the definition of the diabetes diagnosis.

Thanks so much for your perspective...

April

10

Hi Kristin: A very good point you make. I was going by my own experience, and I was hospitalized in DKA at age 35, but given a Type 2 diagnosis. That’s why I say people are lucky if they get correctly diagnosed. I was taken off of insulin and discharged from the hospital, ack! Thankfully put on insulin one week later and given the correct diagnosis of Type 1 diabetes. But a very good point you have, DKA is so awful, it took me 10 months or so to recover. I’ll try to be more clear in the future.

11

Hi April: I hope that I am not overwhelming you with information here, but I think that you should ask to be put on insulin therapy as soon as possible, for a few good reasons. There have been a number of studies that quite definitively indicate that adults with new onset Type 1 diabetes/LADA should go on exogenous insulin as soon as possible after diagnosis, to preserve the remaining beta cells and to minimize complications in the future. There are definitive studies by Japanese researchers that conclude that sulfonylureas hasten beta cell destruction. Jeff Unger, MD, wrote a recent article on diagnosing and treating LADA, and he says that people with LADA should be managed intensively with insulin therapy. Unger says, “The goals for early intervention with exogenous insulin therapy are to preserve any remaining pancreatic beta-cell funtion and to minimize long-term complications via the induction of metabolic memory.” Then, here is some info from my blog “Bill of Rights for People with Adult-Onset Type 1 Diabetes: A Manifesto for the Misdiagnosed”: In the Diabetes Control and Complications Trial (DCCT), all subjects with adult-onset Type 1 diabetes had some residual beta cell function (Bernard Zinman MD, DCCT). Those who were assigned to the intensive insulin therapy group were slower to lose residual beta cell function than the conventional therapy group (risk reduction 57%). Clearly, early intensive insulin therapy has enormous benefit. As demonstrated in the DCCT, “intensive therapy for Type 1 diabetes helps sustain endogenous insulin secretion, which, in turn, is associated with better metabolic control and lower risk for hyperglycemia and chronic complications.” LADA researchers in Japan (Kobayashi et al, 2002) have conclusively demonstrated that better preservation of beta cell function occurs with exogenous insulin compared to sulfonylureas, and that sulfonylureas hasten beta cell destruction. In other words, doctors may inappropriately use Type 2 therapies in new-onset Type 1 diabetes, but all scientific studies indicate that the correct therapy is intensive insulin therapy.

12

The issue, Melitta, is that my doc is saying there really isn't any PROOF for now that I'm a T1. That is the issue.


I do not have any of the risk factors for T2. I'm not PRESENTING as a T2 really...but there isn't any proof, according to this very fine Endo at the local University Med school that I am a T1.... here are the only facts I have:

- I am of normal weight. BMI just under 23 I'm 58 yrs old, 125 lbs at almost 5' 2"

- No high BP; no high cholesterol (LDL is 67, HDL is a tad low at only 35, but total is 125)

- Strong hx of auto-immune diabetes in family (Dad, paternal aunt)

- Personal hx of auto-immune disease (Hashimoto's)

-Diabetes diagnostics:

- GADs negative

- No insulin resistance. Based blood draw after eating a high carb meal and without meds, so that BG was over 200, C-peptides were not high (I don't have the results...but dr. said they were not indicative of over-production and I am not insulin resistant).

- She says I have insufficient insulin.

However, through the middle of December...I was able to keep my a.m. fasting glucose numbers under 100 without any medication. The Onglyza was to help me metabolize carbohydrates so I could eat a more balanced diet. I had virtually cut out all carbs.

My FBG readings have been creeping up however, leading me to wonder if my beta cells are failing faster.....

That's all I know for now...but as of 2 weeks ago, I know that the Doctor did not think I was as yet a candidate for insulin because I was still producing too much insulin on my own...I think...

Oh, and please do NOT think you are overwhelming me with too much info. I have been steeping myself in studies and data and books for the last 6 weeks! So, please, bring it on!

13

Wow. I had no idea that even people with DKA could get the wrong diagnosis. I’m sorry that you got the worst of the worst, really. Getting out of DKA only to be taken OFF insulin!

14

For ME ever ER was a waste, was in ER several times over a couple weeks, they did not figure it out either. My boss asked me to see a co doc, I told him YES, that I knew something was wrong but my regular doc REFUSED to see me for follow-up after a sore throat.

That morning I saw the co doc, he gave me a clean bill of health and I returned to work in time for lunch. Having NOT EATEN in so many hours I had felt better. Then that evening, I sat down with my wife to watch TV and shared some coke (soda pop). A few sips and she called the meatwagon.

They took me to ER where yet again they MISSED the problem, did not ask any questions that might have clued them in BIG TIME. I was admitted to the cardiac ward for low Oxygen. Hey they at least did a blood gas.....lol.

When the co doc cmae to see me, he gave me HELL YELLING at me for not having my diabetes in control and shoved a ADA diet in my face. I was TOO OLD at 34 to e a type-1 and not old or fat enough to be a type-2.

I went thru HELL for about 2 years before starting insulin.

Gomer