I can't believe my endo

Do you know why that’s a tough call? Late-stage Type 2’s (like your friend) get miserable care in the hospital and are often left to PCP’s who know nothing about how to manage diabetes when a person is insulin-dependent.

When I was in the hospital in a coma, they assumed I was a Type 2, and used Type 2 protocols on me, and then wondered why my BGs weren’t coming down. Then when I started to eat, my BGs were going up, not down. The reason: they were only correcting according to a one-size-fits-all sliding scale for high BGs before a meal and not covering for a basal and not covering for food. The CDE finally insisted that they use Type 1 protocols on me, and then I started to improve. She also told me that for any medical reason, I am to tell them I’m Type 1, because that’s the only way I’m going to get appropriate treatment. Another, unrelated CDE at a different time, had actually told me the same thing, and my new endo has me down as Type 1.

I have never had any tests to PROVE I’m Type 1 – my diagnosis was too long ago, but given the antiquated and impersonalized standards of care in hospitals, I, and your friend, are safer telling them we’re Type 1. In my case, it has never been conclusively proved either way (which is why I call myself Type Weird, because I don’t fit neatly into either box), but my body certainly responds much more like a Type 1 than a Type 2. So I’m going for safety and appropriate care, and not going to stand on ceremony.

Hi Stardust: I am really sorry for what you are going through, although I am grateful that you are receiving the correct treatment (exogenous insulin).

Thankfully for my friend’s sake he was seeing an endocrinologist at the time, on MDI, and being offered a pump. But I gather that’s not the norm.

I was diagnosed “type 2” January 2010, at only 100 lbs and 23 years old. My last c-peptide in December was 1.5 (which I’m sure is a lot lower now since I have been progressing very fast all of a sudden) and I was rediagnosed as LADA/type 1.5 in December, and placed on insulin January 2011.

So your c-peptide is similar to mine which means you are insulin deficient and therefore LADA reguardless of your weight your c-peptide is low. I never had the GAD test only islet antibody test which came back negative but I am LADA.

I think it might be asking too much to have doctors not stereotype. They are only human after all and come with the same prejudices as anybody else. You would like to think they would just look at facts, but sadly that isn’t always the case.

Many years ago I was misdiagnosed T2 by a fat-phobic ■■■■■ of a general practitioner. It was not even diabetes but a fungal infection. She did not give me anything for the infection, which could have eaten up my leg if I hadn’t sought a second opinion.

Good luck on your fight for a pump. If Kelly is right then it sounds like you have a huge fight on your hands.

Well, I guess I have posted before about the difficulties in getting a proper diagnosis and this just lays it all on the table. Even with the primary tests that indicate type 1 (LADA), the diagnosis is still just a “judgement call.” This is all about a label. I had my endo tell me I was a type 2 “because that is what is says on my chart.” How is that a friggin diagnosis! As others have indicated, considering yourself as a T1 (LADA) is an appropriate diagnosis and is the proper “conservative” choice.

I know you have expressed a desire for a pump. Don’t give up on that, but also be patient. Realize that getting insurance can involve demonstrating severe insulin deficiency or really poor control, even for a T1. You do not wish either of those things on yourself.

You live right near a big city, and you have a right to second opinions and can even protest and seek outside review from Kaiser. So don’t fret too much over this, this is but one bump in the road and there will be more. Have confidence you will overcome this. And in the meantime, take the opportunity to learn to really implement intensive insulin management well. Carb counting, attention to detail, understanding bolus and correction techniques, adjustments to your ratios. If you achieve command of these concepts, you become an “ideal” candidate for a pump.

You Are always such a wise voice. I’m okay now just annoyed. Yes BSC you are correct stereo type is and always will be,.

My endo has been the same way. I have IAA +, but negative GAD - so I am T2 in their books (still have a Cpep of 1.1 I think so I am still making some insulin). However, I am on a pump and CGM due to the fact that I have wonderful insurance and the fact that my endo is very progressive in her practice, and supported my decision to begin pumping. But, she won’t change my diagnosis yet. And although, it does bother me, I know i am getting the correct treatment, and that my endo (and insurance company) supports it.

To me, “diagnosis” is kind of a self-determination issue due to my experience. In brief: I was originally misdiagnosed Type 2 and did fine on oral meds for 15 months when my numbers started to rise. At that time I was living in Guatemala so didn’t stand much chance of getting a correct diagnosis. I did the research and by the time I actually saw an Endo in Guatemala City I was already convinced I was a LADA/Type 1. She looked at my list of five reasons why and checked off each one, saying, “yes, you are type 1”. (she’d never heard of LADA). I had had a c-peptide which was low - .38 and .70 on two different tests. I didn’t have a GAD because nobody in Guatemala knew what that was. So the Guatemalan endo was the only one who had ever “diagnosed me” (agreed that I was type 1). But when I returned to the U.S. that Guatemalan “diagnosis” wasn’t official.

Fast forward to my current PCP. When I started seeing him I briefly described the above history and said “I am LADA/Type 1” and he wrote that in my chart. He never questioned that diagnosis and prescribed the insulin I’d already started taking in Guatemala. He admitted he has no other Type 1 patients and seems fine with letting me lead. When I requested a pump, the Animas rep handed him the form and he signed it. I just looked back at those orders and nowhere on there does it even say “type 1”, though I told the Animas people when I called them. So bottom line? My Type is self-reported! Some people may say my doctor is irresponsible but for me he is just right. So what would prevent you from going to see a new doctor and saying, “Hello I am stardust and I am a LADA/Type 1”??

P.S. i still haven’t gotten a GAD. No reason for it at this point.

If I could Have that I would let it be. I am just going to back off until may when I see her and she re-does my c-peptide.

Zoe I like you! With kaiser you get to only see their doctors at kaiser facility(new protocol) so I am thinking about scheduling an appt at a center in mcdoungh and discussing with her about this. For now I will leave it where it is.

There is a web page on obesity by Dr. Arya Sharma – google him. He will keep you up on not only the latest resesrch on obesity (NO, it’s not eat less, move more!), and often talks about obesity advocacy. He’s in Canada, so he focuses on Canadian issues, but he’s very instructive.
I’m interested in fat advocacy, not because I’m fat (I’m not), but it’s one of the last groups toward whom it is OK to be blatantly prejudiced and discriminatory. Stardust is experiencing discrimination, and it’s just not right!

I’m sorry to hear that. Unfortunately, your endo is probably going to resist ordering another c-peptide down the road if everything ‘appears ok.’ That means that, if it’s an option, then you might be better off bringing your results to a new endo even though it may take time to get an appt. At least you’re proactive and capable of managing the situation in the meantime. There are too many out there that don’t have the knowledge to know when something isn’t right. I suppose that it’s easier emotionally to not know…but much more dangerous.

Actually, and here’s the funny part, she said in a couple of months we can do the c-peptide again. I’m thinking the numbers won’t change that much in 2 months time. I’m thinking maybe I should postpone that test. Any thoughts?

The most important part is, are you getting the right treatment? Type labels matter far less than getting the right treatment – keeping your BGs under control is what matters most. If things are going well for you, then there is no rush for getting another C-peptide, unless it’s too emotionally distressing for you to have the wrong label. But the longer you wait, the more likely it is that your C-peptide will go down enough for you to be classified as a Type 1.

When I was in the hospital, and getting the wrong treatment (which meant my BGs were going up, and not down), then the label was very important, because it was the only thing that got me treated appropriately. But in daily life, where I’m really doing the control by myself, it doesn’t matter.

So you need to make that decision yourself!

No Natalie I can care less about the label, the principle issue with her still bugs me, but I will let it be as I said earlier. I would like a pump due to my life style, but I think if I wait for 6 months and redo the c-peptide and it is lower then I would have a better chance of getting the pump. I know I am being anal, but I think it is wrong what she did and I want her to learn from it instead of possibly getting someone else really sick. So if I exhibit her “signs” of type 1 she will then be like oops…maybe I should not stereo type, hypothetically of course =)

6 months would more likely show a difference than 2. LADA typically progresses more slowly than classic T1. Though I do wish you many more years of c-peptide to come:) It’s good that she’s willing to consider it! It can be very ambiguous at first, but I just don’t understand why a doctor thinks that misclassifying T1 as T2 is better than the reverse. I don’t see it; at least in terms of patient care and safety the opposite would be true. It’s better to be safe than sorry.

Have you checked with Kaiser to see what their pump requirements are? Different insurance companies have different requirements. There are plenty of T2s with pumps. There are T2s that can’t keep their pump once they go on Medicare because of Medicare’s c-peptide requirements but at least the insurance they had prior to Medicare did not look at c-peptide. Some insurance companies do go by type and won’t give a pump to a T2. If you find out what Kaiser’s policies are, that will at least help you formulate a plan of what you need to do. If they don’t care about c-peptide but do about type, then you know you need to find another doctor. If they care about c-peptide but not about type, then it is just a matter of waiting it out.

Well, one reason to classify a patient as a type 2 is that you can prescribe type 2 drugs without writing a letter of medical necessity. Many agents, from metformin to Victoza are off-label for type 1. Still, it seems like it can just lead to problems.

Some insurance companies want both - a T1 diagnosis and “proof” to back up said diagnosis. Gad-65 can be positive for other reasons (there are plenty of people who test positive for that one without either form of diabetes), so unless they did other antibody testing to back that up which also confirms the T1 diagnosis, then you are still a T2 until you stop making insulin and can argue your case a little better - as long as you ARE on insulin now, the distinction between types makes very little difference.

I say that, because you COULD be in the situation that I and a lot of others were in - my labwork and clinical presentation pretty clearly suggested T1 (I had low c-peptide levels, very high/reactive BG’s, and a doctor who wouldn’t even do the antibody testing), but I was being told it wasn’t possible, and no I could not use insulin - and that could have ultimately landed me in the hospital. I had to take action and find a different doctor who would even do the antibody testing, and all 3 that they tested (there are 4 that they can check now) were wildly positive. That’s a little more telling than having tested only one.

Honestly getting a pump is a moot point if you’re still producing that much insulin… you are not yet “insulin dependent” - sorry if you think otherwise, but you’re not - not yet. That’s usually the defining criteria for any insurance company to approve one. You’ve only been on insulin maybe a month? Most insurance companies won’t approve a pump until you’ve been on insulin at least 6 months.

Past that, if you’re not in control now - pumping WILL NOT automatically fix that. If you can’t do better than a 9.0% on MDI, pumping could actually be DANGEROUS for you. Sorry if you don’t want to hear the truth, but that is it.

Your previous posts (along with your profile) are incredibly confusing. You say you’ve had this for 6 years yet your profile suggests you were diagnosed last week. So which is it? You’ve either been a T1 all this time and you were simply mislabeled (which IMO is unlikely, as 6 years is a LONG time to go without insulin and not end up in DKA as a result), or you’ve been an uncontrolled T2 over all that time, and still are, and rather than taking control of your disease and getting your a1c down, you’re just playing the victim card - I don’t buy it. You need to stop being so hyper focused on the GAD test and worry more about what your BG is doing.