Has anyone else had an endocrinologist(s) decline to tell you what type you are because they can’t verify if you are a 2 or a 1.5?
I have been dealing with endos for almost a year now (very seriously for the last 6 months). Last week, my GAD and islet tests came back negative (please don’t ask numbers they did not provide them to me). The endo thinks I am 1.5, but can’t verify at this point. I don’t fit the “typical” profile of a 2 (32 yrs old, 115 lbs). I am NOT insulin resistant, but at the same time my insulin levels don’t appear to be low. I swear they have run every test I can think of and nothing comes back conclusive for a type, but it does come back conclusive for diabetes. Grrrr.
Is this abnormal? What a lot of Type 1.5s go through if they catch it early?
Hi Belgienne: I think a lot of people here on TuD go through what you are going through, so I would say that your situation is “normal” (can we really call it that?!). Many people who ultimately are found to have Type 1 diabetes or MODY are actually misdiagnosed as Type 2, so perhaps you are better off than that really bad situation. I know it is rough to go through not knowing, and I hope your endo gets to the bottom of it.
My worry is that something bad will have to happen (i.e. DKA) before they realize what is happening. When I did the CGM, my BG never went over 180. They were concerned about it because it didn’t go below 100, and my spikes were notable. Since then, I have been put on metformin, and my spikes have gone up to the high 200s … despite severe diet changes and the meds. I would be okay with being a type 1 or 2 at this point. If they could at least figure out the type, then they could treat it accordingly. Now, I have to wait 3 months to be retested, and I won’t lie … I am scared.
Hi Belgienne: Well then, a possibility is that you can insist that you be put on exogenous insulin now. Really, frankly, your spikes are just too high. I can completely understand why you are scared–I would be too. Do you trust your doctor, and do you feel you can raise your concerns with him/her? We must be our own best advocates within the health care system. Keep monitoring, have keto strips on hand, and you should be able to detect events that could lead to DKA. Keep getting support and advice here, there are lots of caring people who just want the best for you, including me.
Yes, the same thing happened to my dad. He saw the same endo as me – so she suspected type 1/LADA immediately, but his lab work did not confirm a type 1 diagnosis. I think that she was relying on c-peptide and that showed that he is still producing enough insulin (but not too much). So she said, we will treat it as type 2 and keep watching.
I think that this was an OK decision – given that he showed now signs of insulin deficiency yet. More than two years later, my Dad’s blood sugars are still good on medication and diet alone. He has started to see some higher numbers though, but rarely is above 200.
It’s good that you have an endo who is willing to test the type of diabetes, even if it is inconclusive so far.
As Melitta said, there can be reasons to start on insulin early, but I guess that your endo will be hesitant to do this (but you can ask!). You will likely need a very small dose of insulin, perhaps only for meals or only a basal (background) insulin.
About DKA, if you are measuring your blood sugars daily, then it will not likely sneak up on you given that you are still producing insulin. You will see the highs. I would recommend buying come ketone test strips for testing your urine. If you see higher numbers, you can test for ketones at home. As soon as you have more than trace ketones, you can call the doctor and prevent DKA.
If your GAD and anti-islet antibody tests were negative, then your diagnosis IS questionable. So I think your doc is doing the only reasonable thing, which is to watch and wait. I know how agonizing it is not to know – I was first diagnosed as “hyperglycemic”, then “probable NIDDM (Type 2)” then Type 2, then Type 1, then Type 2 again, and then Type 1 again. I made myself sick with worry, and then finally decided that it didn’t matter what type I was, as long as I was getting appropriate treatment. The reason for the confusion for me was that I wasn’t obese, and I didn’t respond to sulfonylureas (which was all that was available back then). And I did respond to a reasonable dose of insulin.
So you need to work with your doc, keep records of how your BGs are responding to foods, exercise, and when you wake up, and when you’re more than typically stressed.
Also, know that Type 2 is an umbrella, and not everyone fits under the well-publicized fat, lazy gluttonous slob pattern. There are thin, active Type 2’s also. There is a group here for thin Type 2’s – they DO exist.
All you can do right now is just don’t worry about it – live a healthy life, but don’t wear yourself out trying to control BGs if it becomes apparent that you cannot reasonably do so. And if the time comes that you need to go on insulin, well, it’s a life-saver, and I’m grateful that I got on insulin early. Good luck – you WILL get your answer eventually, even though the waiting is the pits!
My endo refused to diagnose me, instead relying on previous diagnoses performed by GPs years ago. When I asked for him to give me a fresh diagnosis, his answer was basically, “I don’t have to do that, I can read it on the chart.”
The fact that your endo will work with you with an open mind is refreshing. That being said, everything you’ve told me suggests that for the most part, even if you are LADA, you are actually in reasonable shape. Even non-diabetics have significant blood sugar rises after meals, below is a chart showing a blood sugar
You are on top of things. If your blood sugar gets bad, you are going to see it and you will do something about it. This whole thing is scary, but remind yourself that many people never notice things early and instead walk around, literally for years with elevated blood sugar problems. You are going to let that happen are you?
They did not refuse to diagnose me, but I did get wrongly typed. It was only after a second ketoacidic attack that they came to me in hospital and said that I was Type 1 and why had I not taken my insulin? Erm. That could be because I was not given any! I was on tablets at the time and I had a chest infection but had no knowledge that this could cause this!
I am now on insulin - but was given the wrong sort - human insulin - and had numerous problems with it. I now have no awareness of hypos. I had to fight for four years to go on to pork insulin which does suit me a lot better as it is less aggressive. For example I was out shopping yesterday and began to feel odd, sat down did a test to discover that I was in fact 1.6!!!
I am afraid I know little or nothing about 1.5 but I do know what it is like to be misdiagnosed! I had had all the symptoms of diabetes for 10 years but it was not picked up! Even during 6 weeks in hospital. I was not able to sleep one morning and went for an early walk. I came back to bed and the nurses asked where I got the alcohol from and did I need some help with that! They were adamant that I had been drinking - but now I know it was ketones!
Personally I don’t think it’s awful important that you have a particular type. Many of the tests that you might think would be conclusive (e.g. C-Peptide, GAD) can in fact be very vague early on in 1.5/LADA.
I think it’s a lot more important that you be getting the treatment and education that usefully helps normalize your bg’s. And it sounds like your endo is helping you there.
At some point you may need to be classified for insurance coverage or legal purposes. e.g. insurance company may require specific C-peptide or GAD tests and results for getting a pump.
If it makes you feel any better, the diagnostic codes seem to be 250.00 for “general diabetes” and 250.01 for “Type 1 diabetes”. I’m most definitely type 1 but my docs see me as an adult and write down 250.00 on most of the paperwork most of the time. Keep in mind it was only a couple of years ago that the ICD was updated to be “Type 1” and not “juvenile diabetes”.
Just to let you know, I’ve never had any C-peptide or GAD tests run on me. I just showed up in the ER in my early teens in DKA coma and bg in the mid-thousands. I’m not sure C-peptide or GAD tests were common at all 30 years ago.
I do trust my endo (for the moment). He has been very responsive and proactive. I don’t think he would go for the insulin right now because HbA1C isn’t bad despite the spike. I think I am going low too and not realizing it.
Thank you very much for the support. I can’t fathom what I would do without TuD!
Thanks! It is good to know this is “normal” … !!! Stupid question, can you have ketones when you BG isn’t consistently high? I have high spikes, and my fasting is slightly elevated (as in rarely below 100 but below 140).
Not gonna lie … I am a worrywart! I would feel better if I was getting the right treatment. I’m not, but I understand why the doctors aren’t changing it right now. Why change something when you don’t know what to change it to?
I have completely overhauled everything (food & diet) and to only have your A1C go down 0.3 is nuts. To me, that says I am not responding to the meds. Of course, I could be wrong. Who knows!
Thank you for your input. I appreciate every single comment.
Ouch on your endo! Is that laziness or just a bad day on his part?
They have decided I am diabetic at this point. They just don’t know what kind, which I am finding funny at this moment. I haven’t told a lot of people yet, but I had to let a few know. Do you know how odd/hysterical it is to tell people “I have diabetes. I just don’t know what kind. No, really.”
True. “I think it’s a lot more important that you be getting the treatment and education that usefully helps normalize your bg’s. And it sounds like your endo is helping you there.”
I guess the issue is (1) I don’t feel good, and I am really tired of not feeling good and (2) if I am a 1.5, then I want to start insulin to preserve my beta cells. Even my endo said that if I was a 1.5, he wanted to put me on insulin. Of course, the tests can back and just made everything more confusing.
You can have trace ketones from fasting (diabetics and non-diabetics can have this). I have also heard that you can have high ketones with normal blood sugars, but I think that this is rare.
DKA is almost always accompanied by high blood sugars. You shouldn’t see anything more than trace ketones from fasting with a morning reading of 140.
I can tell you stories about that endo, but that will have to wait for another day. I’ve been diagnosed as diabetics for six years, but I still am not clear what type I am. I think many of us have probing questions about “What is exactly wrong?” and “How did this happen?” Over time, I guess I have just come to a sort of acceptance. Stuff happens. I won’t be any different if I know what is wrong or what happened. All the really matters is getting appropriate treatment so that you can live a long happy and healthy life. And so after extensive efforts trying to get a specific diagnosis with no success, I’m just going to focus on getting effective and appropriate treatment. Cause in the end, that is really all that matters.
When I was formally “diagnosed” in 1998, my endocrinologist smiled at me and said: “it really doesn’t matter what type you are, the fact is you need insulin to manage your blood glucose.” And to a considerable degree he was right. He began me on MDI (I now have a MiniMed 522 pump), discontinued the ineffective oral meds, and helped me manage my numbers.
Unfortunately, insurance companies and the federal government DO require typing to determine benefits – so persist with your questions. Sooner or later you’ll need to know.
My gut feeling is that you need to focus less (and help your docs focus less!) on lab test results, and more on your personal feelings and bg logs.
Next time your endo says he wants to do something but will wait for some vague not-so-definitive test result, you can drag out pages and pages of bg test logs and make it clear what you think you should be done. Graphs might work well if your endo is quantitative (not all are). I think you’re really close already.
Keep in mind in the past there was a huge stigma associated with a T1 diabetes diagnosis and starting insulin. Docs avoided that sort of diagnosis until it was inescapable. Your endo probably overlapped with that era. You can help him move on.
IMHO, preserving beta cell function might be over-rated :-). Just my two cents.
I think it is important that you be able to do something about not feeling good. But in your first post here you noted that you had Hashimoto’s, Mitral Valve Prolapse, Fibromyalgia, and reoccurring shingles. It may be that completely normalizing your blood sugar with insulin does nothing to address your not feeling well and being tired. And thus pushing for a perfect diagnosis and early insulin use does not help. There are many people here who will tell you that thyroid problems (you do have Hashimoto’s) can be the entire source of symptoms. Just some thoughts.
