Newly diabetic with antibodies

A quick bit about me. I am 28 and overweight. So about 7 weeks ago, I was 6.5 weeks pregnant and my ob found sugar in my urine. Did blood tests and my a1c was 12.6. Looking back for about 3 or 4 months I had symptoms. Frequently needing to pee, hungry and thirsty constantly, reoccurring yeast infections, fatigue and I lost 30 pounds in 2 months without trying. They sent me to an endo. I was put immediately on a sliding scale mealtime novolog and Levemir at night. I ended up miscarrying 2 weeks later. I went on an insulin to carb ratio at that time. My insulin needs have gone down. I take 25 units Levemir and 15-20 units Humalog a day. My endo is having a hard time uttering the words Type 1 Diabetic because I am 28 and fat. My mom was diagnosed type 1 at 35 years old. But anyway, the endo said most type 1s are skinny. My c-peptide came back at 1.0 and the labs normal range is 1.1-4.4. I also tested positive for gad65. I don’t have high blood pressure or high cholesterol. I did not have gestational diabetes with my daughter who is 16 months old. I am definitely being treated as a type 1. She put type 1 on my paperwork applying for a pump, but doesn’t want to say it outloud because of my weight. She said I’m a “mystery”.

In your experience, what is the chance that I am type 2? The more I read the more confused I am!

I am hoping to get an Animas Vibe with the Dexcom within the next 4 months, hopefully much sooner as I would like to have it before getting pregnant again.

Do any of you have experience with being pregnant with preexisting diabetes? Any tips?

I am doing well with my sugars and average around 110 or so says my glucose meter. I am trying to keep tight control. Any advice or knowledge you all could share would be wonderful!

If you test positive for antibodies then there is some sort of autoimmune activity going on, and that means Type 1 or LADA quite independently of other indications. And yes, it is possible to be Type 1 with insulin resistance and yes, it is possible to be Type 1 and overweight.

The old rules of thumb are less and less valid with each passing day. Used to be, Type 1 was nearly always observed in children and Type 2 in adults. That hasn’t been true for quite a while and is becoming less true all the time. We are seeing Type 2 earlier and earlier in childhood and Type 1 at just about any age.

So it is with the “overweight” rule and other rules of thumb.

To repeat my basic mantra (those of you who have heard this more than a dozen times have permission to tune out), in one important respect, it doesn’t matter whether you are Type 1, Type 2, Type 58, or Type 77. At the end of the day, what counts is getting BG under positive control and managing it to keep it that way. Whatever lifestyle and treatment options allow you to achieve that are the ones you need to follow. If that’s diet and exercise, great. If that’s insulin or other meds, then that’s what you need to do.

None of this is to say that an accurate diagnosis doesn’t matter. Quite the contrary, it’s critical. For the reasons described above, many doctors have a knee-jerk tendency to assume that if an adult presents with symptoms, they must be Type 2. Sounds as though your doctor has done the right thing in ordering antibody tests, even if she has to overcome her own reluctance to fully credit the result.

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Here is a really good explanation from @Melitta

please accept my sympathies to you on the loss of your baby.

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Sorry you had to join the club, but it definitely sounds as though you are Type 1. In the “old” days there were very few heavy Type 1’s because we either ate a restricted diet or peed out the excess sugar. With improved treatments and newer insulins, most Type 1’s eat a typical American diet and many are heavy as are many Americans.

Sounds like you are good at advocating for yourself and keep that up. You want to get the correct diagnosis because pumps, CGMS, and text strips are much easier to obtain with a T1 diagnosis.

I am so sorry for the loss of your baby. There are so many stories of successful pregnancies with Type 1 and you should be optimistic about your ability to have a healthy baby in the future. I suggest you Google “Type 1 diabetes and pregnancy blogs” to read blogposts by a couple of T1’s who wrote about their journeys. I also suggest that you check out Ginger Viera at Diabetes Daily and the journey of her pregnancy. Viera and Jennifer Smith from Integrated Diabetes (http://integrateddiabetes.com) are in the process of writing a book about T1 pregnancy, but I’m not sure what the publish date will be. I think that there are a couple of books already out there.

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Hi @Dana925,

I am so sorry for the loss of your baby. My heart goes out to you during this time and to come along with a diagnosis of T1 probably feels like a double whammy.

I was diagnosed after my 2nd child was born and I was considered an anomaly because I had gestational diabetes with my first 2 pregnancies and turned to T1 instead of T2 like all my doctors had warned me of before. I felt a little betrayed by life. Its pretty simple, overweight or not, if there are antibodies, its T1. I would also have your endo test your Thyroid. I was diagnosed as a T1 with Hashimoto’s hypothyroidism. Autoimmune disorders tend to walk hand in hand. I’m not saying you have it but its a good idea to test for to be on the safe side.

I would love to invite you to the Diabetes and Pregnancy & Managing Diabetes in Pregnancy subject forums. These are great places to talk to other women who have gone through miscarriages and managing the highs and lows of diabetes before, during, or after pregnancy.

My prayers are with you during this time,

Busybee

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thanks @busybee, we have indeed had lots of successes here with pregnancy. here’s a link to that category

double whammy indeed, @Dana925, know you are a member of our family here, any way we can help you, let us know.

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Hi Dana925: I am so sorry for the loss of your baby. Yes, if you are autoantibody positive, you have Type 1 diabetes. What you weigh is not relevant; the disease you have, Type 1 autoimmune diabetes, is very relevant. There is no mystery, and your doctor shouldn’t be saying that IMO. Here is a blog I wrote about autoimmune gestational diabetes that I hope is useful: Autoimmune Gestational Diabetes

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Not all experts agree that antibodies are conclusive, Melitta. I’ve read your blog before and all the links that you cite, but please note even though it’s a topic you’re passionate about-- the jury is still out on this subject.

There are many cases that are not clear even when antibodies are present (such as my own, and likely the OP’s), and antibody tests can be falsely positive… There are many unknown variables. It’s not a black and white subject… If it was, doctors around the world would lend it a whole lot more credibility than they do.

Any lab test can give a faulty result in a certain (usually small) percentage of cases, so if in doubt, it’s always wise to repeat the test to confirm. Did it quite recently, in fact, with a test unrelated to diabetes, and the result was indeed different.

As for antibodies–they come from one place and one place only, and that is the immune system. If antibodies are present, there is immune or autoimmune activity occurring. No exceptions.

And with respect, you have more faith in doctors and their soundness of judgement than my experience warrants.

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Thank you all for your responses! I have actually had the gad65 test done twice, and both times were positive. I’m not sure why she hasn’t run the other antibody tests. I have blood work coming up again January 4th, so I will specifically ask her to add those tests. I am hoping to have significantly lowered my a1c by then. My mom was diagnosed a year before she became pregnant with me and had multiple doctors tell her to have an abortion. But here I am, so I know it’s possible to have a healthy pregnancy. She does have Graves disease but so far my thyroid looks ok. But who knows if the doctor ran the right tests.
I am having trouble making up my mind on finding a new doctor. This doctor does care, she even gave me her cell phone number for after hours questions.
She has me down as type 1 on my application for a pump. I’m just not sure I can afford the pump yet even with insurance, but we might be able to get a loan from a family member. My mom said getting a pump changed her life. For now, I am just trying to get my i:c right. But as soon as I think I’ve got it figured out I have a low or a high and I’m so confused again! A cgm will be so nice to see patterns and hopefully help me avoid the lows I’ve been having!

The Expert Committee on the Diagnosis and Classification of DM, the World Health Organization, and The Type 1 Diabetes Sourcebook (ADA/JDRF, 2013) all say that the presence of autoantibodies (in a person who has been diagnosed with diabetes) means the person has Type 1 autoimmune disease. Just because some doctors don’t give it more credibilty says a lot about the doctors, not the science–many doctors just can’t psychologically get over the fact that Type 1 diabetes is not a childhood disease (and many think that all Type 1s are slim). With the OP, she tested autoantibody positive twice, her mother has Type 1 diabetes, she was diagnosed with diabetes very early in her pregnancy, and she was put on insulin right away and remains on insulin. That is overwhelming evidence that she has Type 1 autoimmune diabetes, again, no mystery.

See if you can even get a 1 week trial of a CGM approved… not perfect, but might be helpful enough to get you going-- I know I got a ton of information from just a week worth of CGM data.

I too joined the club no one wants to belong to at age 28 and immediately put on insulin (in those days it was R/NPH). I was not obese but no one would have described me as skinny. Unlike some, I hadn’t lost weight prior to being dx’d but my symptoms had come on quite acutely over just a couple of weeks and I don’t think I’d had time for it to have had much effect that way, though I was certainly in DKA territory. In other words, this statement strikes me as something I’d see listed in one of our threads on “Stupid things people have said to me about T1” and not something that has any business coming out of the mouth of a specialist. The age thing in particular: I’ve met any number of T1s who got it in their 20s, and several who got it at the same age as I–28. Why f’r cripesakes does your endo suppose they stopped calling it “Juvenile”???

On edit: Rant aside, I’m sorry to hear you lost your baby–that’s a terribly painful thing to have to deal with without T1 on top. Please add my sincere condolences to the others expressed here.

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This is absolutely correct… however, people who don’t have diabetes at all can have any combination of antibodies associated with diabetes… think about that— if that’s not proof positive that antibodies aren’t conclusive when it comes do diagnosing type 1 diabetes then I don’t know what could be— also, people with type 1 diabetes don’t always show antibodies… again, rational common sense proof that they are completely inconclusive. Also note that people with antibodies can in many cases be producing copious amounts of insulin, indicating insulin resistance instead of insulin deficiency, blowing the entire concept completely out of the water.

@ mellita I understand that certain sources have decided to categorize it this way… but that in my opinion is more of a bureaucratic body deciding on a definition than an actual consensus amongst medical experts on the etiology of a disease.

It may not be a great mystery in the specific case of the OP, but I stand by the statement that some experts (including some of the leading experts) disagree on the significance of autoantibodies associated with diabetes-- or even in the type 1 / type 2 model

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I never had mine tested back when I was dx’d at age 28–I dunno if they were even routinely testing this stuff in 1983. So after 32 years I took the impetus from switching to a new endo this year. I mentioned never having had those tests and she said “Let’s go ahead and do 'em then.” Surprise, I came up negative. Absolutely no question it was/is T1. I hear about LADA people going for a long time, even years, before dx but my symptoms came on over just a couple of weeks and I was verging on DKA coma when my wife brought me in according to the Doc. God knows what would have happened if I had been tested and came up negative back then. Of course I don’t know whether the passage of over 30 years has an effect–I assume not, but I don’t know how common it is to get tested so long after the fact.

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Not sure - but perhaps you’re lucky that you cam up negative. Assuming you had antibodies at the beginning, once they did the damage, you stopped producing them. I believe I’ve heard that in many cases (at least in many cases of LADA), once the ‘rogue’ antibodies finish up with the beta cells, they move on to other “harmful” hormone-producing cells, such as the thyroid, pituitary, or adrenal glands, causing additional autoimmune diseases.

(I’m sure I’ll hear how wrong I am from someone… :wink: )

With a positive GAD it sounds like Type 1 . I have been a type 2 for almost 9 years and just now I am being tested for LADA. My GAD came back normal but my c-peptide was 1.1 and I already have diabetic complications. I lost my 3 rd baby, full term in 1982. So I feel your loss. I went on and got pregnant pretty quickly and delivered a healthy boy. I then had 2 more healthy pregnacies. Not all Type 1’s are thin and not all type 2’s are overweight. i weigh 114 pounds.

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True, but not really relevant to the discussion. The OP’s issue concerned the presence of antibodies, not their absence. In the case at hand, antibodies are present, and the pertinent question is, are they a marker for T1? The answer is almost certain to be yes.

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The only study that has tracked non-diabetics who are autoantibody positive for a long period of time is TrialNet. TrialNet uses a combination of number of autoantibodies and titre to predict, with a lot of accuracy, the timing to Type 1 diabetes diagnosis. So the presence of autoantibodies is pretty conclusive. And yes, some people with Type 1 may not be autoantibody positive–Dr. Anne Peters, editor of The Type 1 Diabetes Sourcebook (ADA/JDRF 2013), believes that not all the autoantibodies have been discovered yet, and then of course there is Type 1b diabetes. And Dr. Peters and the other doctors who contributed to The Type 1 Diabetes Sourcebook aren’t bureaucrats, they are leading diabetes researchers who use disease process (immune-mediated destruction of the beta cells) to define Type 1 autoimmune diabetes. So @Sam19, who are these “experts” who disagree on the significance of autoantibodies?

It’s not like I have a list, or a particular interest in citing sources in an Internet forum conversation… I just don’t agree that antibodies are the case-closed slam dunk that you do… And since neither one of us have any relevant authority on the subject outside of Internet access and Google I suppose we’ll just have to settle to disagree on the subject.