Do you really think doctors should first suspect LADA? I would think that if a patient presents with elevated blood sugars that are not serious, then trying diet, lifestyle and metformin would be a prudent approach. If the patient does not respond, then of course one could check for LADA. Not responding to metformin would seem to a big red flag that insulin resistance is not at play. As I understand it some estimates are as many as 15% of type 2 diabetics test positive for autoimmunity (and hence should probably be considered LADA). But do you really think LADA should be considered first?
you are not over reacting.
stick to your guns.
you should even get a second opinion from a mechanic, let alone from a doctor.
never be intimated.
ask to see an endo.
only YOU are really in charge of your health
my point(s) is this
doctors are human (not gods)
never, never, be ‘cornered’ by a doctor. never
With certain people, yes adult onset Type 1/LADA should be considered first. The problem, and we have seen it with some people on TuD, is that some people are given the diagnosis of Type 2, given the treatment for Type 2, believe they are getting appropriate medical care, and then go into DKA. Which could have been avoided if they had gotten a correct diagnosis and been put on exogenous insulin.
Hi Paul: I told you I would get you some references, here are two. First, do a google search on “Johns Hopkins Is It Type 2 Diabetes or LADA?” It’s a special alert from Johns Hopkins Medical. The only inaccurate information is that they imply that LADA is something new, when it has been well documented for decades.
Then, a great, simple yet informative description of LADA is on the Diabetes Exercise and Sports Association (DESA) web site. Thanks to Dr. Sheri Colberg!
Type 1.5, or LADA (Adult-Onset Type 1)
If you have LADA (latent autoimmune diabetes of the adult), sometimes called type 1.5 or slow-onset type 1, you still have a form of type 1 diabetes and will be insulin requiring at some point. Over half of all cases of type 1 diabetes are now being diagnosed in adults of all ages, so it’s not surprising that the American Diabetes Association stopped calling it juvenile-onset diabetes over a decade ago. The onset of LADA is generally much slower in adults than it is in youngsters, and the symptoms may be controllable much longer without going on insulin. If you have LADA, you may still be making some of your own insulin for a while, which makes controlling your blood sugars much easier. After you eventually lose your glucose control even when you’re still exercising like a fiend, it’s time to consider insulin injections (or an insulin pump) your friend and not your foe.
If you’re an extremely athletic adult (age 25 or older) and you were diagnosed with type 2 while regularly active and at normal or near-normal body weight, you likely have LADA instead. Up to 20 percent of people with type 2 diabetes actually have LADA. Being misdiagnosed with type 2 because of your age is common, and you may initially respond well to oral diabetes medications (which further confuses the diagnosis). But you’re not likely to be insulin resistant as a true type 2 person is. If desired, you can get antibody tests done to help make the diagnosis of LADA, mainly because you need to start your insulin therapy (rather than diabetes pills); early treatment with insulin injections may actually help preserve your remaining pancreatic beta cells for a little longer.
Content reprinted with permission: Diabetic Athlete’s Handbook, Your Guide to Peak Performance, by Dr. Sheri Colberg. Human Kinetics, November 2008.
Paul, I totally understand, being from Ontario as well. I’ve fired more than one doctor along the way for that kind of behaviour, and given our severe doctor shortage in our area, I am on a long waiting list for a gp, but I’m lucky to at least have a good endo.
I would strongly suggest that you don’t show all of your cards to your doctor going in. You don’t want to be perceived as crazy, and if they aren’t well read on all the complexities of this disease, they might label you as such, and not be willing to listen. Unfortunately I’ve seen more than one gp who has little understanding of this condition, however, they seem willing to pass you off to a specialist if you ask more questions than they can confidently answer.
As others have already suggested, just ask lots of questions, including those that you know might show the doctor that you are actually well read on the subject. If they don’t offer, then ask about the possibility of getting into see one. Hopefully once you get there, they might be more willing to listen to you, and actually seriously consider the tests.
Hi Marina/bsc,
I’m not sure exactly. It was suggested in this forum that I could possibly be LADA. I’d never heard of it so started to do my own “internet” research. I quickly found I fit some of the profiles of LADA; I’m over 40, there is no history of diabetes in my family, I have been slim all of my life (165lbs - 6’-0" tall) and have recently lost 20 lbs in 5 months.
While my numbers are descent (5.0/90 fasting) and I can usually keep my post meal numbers below 140 with diet (low carb) and a good 1 hour walk after big meals. I had the glucose Intolerance test in Oct (the orange drink) and I was 252, 2 hours later. If I eat a carb intensive meal my numbers will shoot up to 180-250 range at 1 hour and be back to the 100-140 range at 2 hours.
What do you think? Am I overreacting, should I continue with diet, exercise and monitoring or should I be concerned and want to get tested?
Thanks, Paul
From what I read you certainly fit the profile for a LADA and it bears more investigation. The weight loss coupled with the high tolerance test doesn’t seem right. If you were a normal twenty year old with a perfect pancreas you would cover orange juice without problem and would be right back below 100 after two - three hours For piece of mind I would keep fighting for the tests.
Have you ever tested for ketones? That would be an additional piece of information because ketones are not common in T2s (they do sometimes occur, but it is rare).
Certainly you don’t fit a typical insulin resistant overweight profile for a type 2, but not everyone does. But realize, although you displayed a serious intolerance of carbs, you are currently well controlled on just diet and exercise. What would convince a doctor to order some expensive tests? If you were diagnosed LADA how would that alter your current treatment? Would you go on insulin? Why, you are well controlled with diet and exercise. I think you are prudent to be concerned about your health, but we just get pushback when we ask for these sorts of things. Here is my experience:
I was not as thin as you, but I 5’11"" and 165 in college and up until I got diabetes, I was about 175-185. I am now 205 and 15% bodyfat, lean and muscular. Like you, I’ve generally been very carb intolerant. Red Flag.
My concern over my degrading blood sugars led me to extreme levels of diet and exercise, essentially masking the true sad story of my condition. If you eat no carbs, you won’t have a blood sugar spike. And let me tell you, eating to Dr. B levels and having an HbA1c of 6.5%, something is amiss. Red Flag
I took metformin at max doses for extended periods, starting and stopping more than once. Metformin was not effective. Red Flag.
I tested with a low c-peptide at a modestly elevated blood sugar. I am probably insulin deficient. Red Flag.
I have a bunch of relatives with diabetes, there is likely a strong genetic component. Red Flag.
But, I have always been very diligent about avoiding acute symptoms. Because of this I have avoided high blood sugars and not presented myself at the doctors with highly elevated blood sugars and an HbA1c of 14. And I certainly would no allow myself to go into DKA. This diligence has however masked any seriousness of my condition from my doctors, making any argument for further aggressive testing difficult. Despite all these red flags and discussions over literally years, I’ve never been able to get the LADA tests.
I am not disaggreeing with any of the arguments that you don’t fit a typical T2 diagnosis, but despite the progressive views of Melitta and Marina, I think you will have an uphill battle getting the LADA tests until you put together a more compelling reason. Here is what I would suggest you do:
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Get an agreement to test at one hour in addition two hours and document what you eat (carbs) and your spikes and clearly display continued blood sugar problems despite a good fasting and HbA1c.
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Go on metformin and see if it does or does not help (lowered HbA1c or lowered meter readings). If it does not help, then you have an argument that you are not insulin resistant and not t2.
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Realize that while you are tightly control with diet and exercise, there is no little reason to spend money on added LADA testing since treatment would not change. When you add oral meds, then it makes a difference.
I hope that is helpful.
Hi Shannon,
I just looked at the printout from my last blood work and the second sheet (under urinalysis) does have “Ketones” which has “Negative” beside it… What does this mean?
Thanks…
Hi Paul -
I can only empathize with you because I had a battle somwhat like yourself. I was diagnosed in 2006 as being type 2. After 3 years of rigorous exercise, diet, and medication I found myself eating 1200 calories a day, thin, and having problems controlling my sugar. When I say controlling my sugars my post prandials were reaching upwards of 500. I went to my GP only for him to say I still had type 2. Luckly the GP called and ordered some lab work to test my A1C so I called back and spoke with the nurse to see if they would add the GAD panel (I know if I had asked my GP up front he would have denied my request) but fortunately the nurse (or PA) added the test. This is what set the pace for my correct diagnoses. The GAD came back positive and after another follow on appointment my GP was furious that someone in his office ordered this test… so I walked away from my GP saying… “You Fired” and got a referrel. The problem was the referrel was over two months away before I could get into seeing an Endo. I went to yet another GP to see if I could get some help with my sugar control only for this GP to order more tests and say that I had type 2 also. To make a long story short after two months I finally was able to see an Endo for him to only confirm what I already knew… LADA. To make thing more ironic the Endo didn’t need to see my GAD or IA-2 antibody panel to confirm LADA. I am slinder, no history of diabetes in my family, a son with Type 1, high sugars, and below normal insulin levels. I started MDI and I feel great again!. After 3 years of starving myself I am starting to feel like a person again and not being controlled by my diabetes. I would only have to say stay on your quest and don’t take no for an answer. This is your body and not the Endo’s. If this Endo is that narrow minded and is not on the same track you are on then your relationship with your Endo will not work. You are putting your life in this Endo’s hands and are you prepared to base this on his\or her arrogance?
Please keep us informed on what you find. I found that these forums are an excellent source of information and help as you progress through your journey. You will probably find that most of us have had to deal with the same level of narrow mindness and fustrations. We are all here to support and give encouragement. I am blessed to have found such a wonderful group of diabetics!!
Keep trying Paul. I am glad this last one was honest about it anyway, because the last thing a thinking diabetic (or anyone) needs is a doctor who doesn’t want you to think for yourself!! That is totally unconscionable and you have really dodged a bullet there! There are doctors out there who will work WITH you. I am very fortunate that mine just praises me for doing my own research and taking charge of my own body. If she questions me we talk about it, and of course she has the power of the prescriptions and more formal medical knowledge, but she knows I am in charge and likes that. You will find one like her too. It’s frustrating, but keep looking. (I HATE when a doctor I like quits their practice, has happened to me a couple of times.)
I think this is a good advice…
We should create a black list… doctors to avoid !!
Or the top 10 most incompetent doctors !!
Like mentionned here… You need a partner not an adversary…
Reading all the replies…makes me kind of (no, very) mad that we have to figure out how to approach the doctor by flattering his/her frail ego, fibbing about what we do or do not know, and carefully rehearsing our questions so as not to offend them. It’s all good advice and should help, but it shouldn’t be necessary!
she’s a tool. you’re doing the right thing by bringing up your concerns and standing up for yourself. keep it up you’ll find the right doctor
I was diagnosed at age 30 with diabetes. My PCP thought it was Type 2, and put me on oral meds. My blood sugars were high (500’s) and my A1C outrageous (13.8). The meds did a little, not much though. The PCP was perpelxed by my diagnosis and unusually high blood sugars (she saw adults only), and fortunately for me, recognized her limitations, so she sent me to an endo, who took one look at me and declared me Type 1. I was 120 lbs, had never been overweight, and had no family history of diabetes, but do have a familty history of autoimmune disorders. He took me off the meds, and put me on insulin. It fixed the problem immediately, and I remained on a rather low dose for many years. Subsequent testing confirmed I am indeed Type 1, and I believe I had LADA onset.
I disagree with the notion that it doesn’t matter if you are Type 1 (LADA) or Type 2, as long as your numbers are reasonable. The treatments are different. I believe that studies strongly show that starting on insulin immediately after a Type 1 diagnosis helps prolong the remaining beta cell functioning. This is not inconsequential; to have some reserve beta cell function changes diabetes dramatically. For several years after my diagnosis, I took only 7 units of insulin a day, and had A1c’s of 4-7-4.9. Since I lost my reserve, I now take 30 units a day, and have A1C’s that range from 5.8-6.1. Also, some diabetes meds have unintended side effects, why take oral meds if what you need is insulin?
Also, I knew a woman who in her early 30’s was diagnosed with Type 2. Her numbers got worse and worse, and she became a skeleton, and had no energy. Her treatment team kept insisting that she was not following her diabetes diet well enough, and they sent her to a dietician. The dietician, who was herself Type 1, suggested to her doctor that this patient might be Type 1. Testing was done and indeed, she was. Problem solved. Insulin and the pump were what she needed, not blame and insistence she was not adhereing to her diabetes diet! To this day I do not know if she was able to get past the anger the incident caused her.
I would present to another doctor, act compliant and ask the questions others mentioned, such as “One doctor I spoke with felt I might have Type 1, what do you think?” or the story about a friend having it. Sadly, I don’t think PCP’s/GP’s know nearly enough about this…some I have seen have heard the age I was diagnosed and suggested that I must be Type 2. I just smile, and explain that my endo who manages my diabetes.has done all the testing and I am Type 1. I then explain that they told me it is not the age of onset that determines type…
I think your doctor’s response warrants a complaint, not sure how that works in Canada, but I think her response was unprofessional and out of line.
Try to get into an endo. If you can’t, and can afford it, it might be worth coming to the US for one appointment with a good endo and appropriate testsing.
I DR shopped–I for my GP–he is out of my network so I have to pay for him (in network I do not)…I went in with a list of questions for him the first time–knew I had the right fit when he was impressed and HAPPY I came with a written list of questions --and wrote his answers down…
He was #6 --not all were happy–and a few told me they did not want me as a patient—they did not want question asking–just complaince after which I told them just as well because my Drs worked for me not the other way around and I wouldn’t have em for my dr anyhow.
Endo was a bit different --this wonderful GP wanted me to see my present endo–but the waiting list was 9 months…so hereally wanted to get an endo opinion because of other issues–so we agreed to try a different endo–
I fired her–kinda like your apt–she dr and just wanted compliance
my GP managed me until I could get into see my current endo (and her noted to never send anyone else to her) --we tried lots of stuff–even byetta --ditched em when it didn’t work and went to insulin–only to find I was surprisingly very insulin sensitive… and then the endo he wanted me to see (they actually went to med school together) took over–but they are a good “team” Endo got me on a pump almost immediately, CGMS etc–
They both look at anything/everything I bring them off the net–sometimes they agreee—sometimes they do not–but spend time explaining why…
I am not technically a LADA–I am an accute onset --prob due to a very nasty life threatening infection that hadn’t been identified at the time (almost killed me–long story)
But don’t give up until you get the answere/results you want/need. It is very frustrating…but worth the frustration.
Ouch! Don’t give up. Keep looking! I’ve been to SO many doctors over the years, I know within the first 5 minutes or so if they will be close minded and think they know that “I” do about my body! That’s sad, isn’t it? I think unfortunately there are many out there with this syndrome, but if you keep looking, you’ll find a good one!! I agree with Shannon, maybe others in your area can make suggestions? Best of luck to you!
Well, i guess the majority of doctors are ok and will encourage self-learning (I hope). My endo does…
she is somehow surprised when I come up with “advanced” questions, but very open to discuss it. And that’s how doctors should be… they can actually learn something by listening to there patients, as everybody is wired differently. They learn the theory in the books, but I believe the experience is as much important, and this is something they learn by listening to us !
If my doctor would have a problem with me doing self-learning, this wouldn’t be my doctor for long…