So, I went to my appointment at NIH last Wednesday. I had been sick with a stomach bug a few days before and wasn't eating much so I expected my fasting to be lower. It turned out to be borderline at 100. The Endo told me that based on my history and past higher fasting and post meal readings I "technically" have pre-diabetes, which I already knew. She said I should come back in a year and to basically keep on eating a healthy diet and exercise. They also did an A1C, CBC, and tested for GAD and I got those results today. My A1C went up from 5.6 four months ago to 5.9 despite the diet changes. I also tested positive for GAD the scale was <.02 nmol/L and mine was flagged at .05 high and it said suggests predisposition to type 1- diabetes and related autoimmune thyrogastric disorders. The nurse said the doctor will be in touch and she couldn't make a diagnosis, but I MAY have LADA. Although I knew about the pre-diabetes I am still surprised and not sure what this means. The testing was sent to the Mayo clinic so I'm fairly sure it's accurate. It will be interesting to see what the endo says and I hope I get some direction because I don't know what to make of this or where to go from here. Does anyone have suggestions or recommendations? What can I expect? I'm a bit worried and trying to figure out if there is anything I can or should do.
Wow! Great job catching it and staying on top of it. It sounds like you and your doc are both on the same wavelength and doing the right tests and all that. I think for now, it seems as if you are moving exactly where you need to be moving. Finding this community should help you a bunch, as there are many members with similar medical situations, including many whose doctors just guessed "oh, you're not a kid, it must be T2...".
If you want to be aggressive about it, you might find "Think Like a Pancreas" a useful "owner's manual" type of book. I've always felt that diabetes is a pretty merciless opponent so I try to be aggressive in fighting with it.
I agree with acidrock, you lucky duck! You got a doctor that doesn't want to just throw you metformin and call you a type 2. I also agree that you should pick up Think like a Pancreas, even if you don't need it or want it yet? Have it in your possession as it's important and a very good read about diabetes in general.
Really, all I can tell you is if you have the autoantibodies and have some borderline blood sugars, you are likely what they consider LADA. I don't use this label however, it's type 1 diabetes in adulthood, and it often has a slow onset compared to what children have (though not all type 1's diagnosed as adults have slow onset, I don't think mine was all that slow) . All I really think you can do is do the best you can to stay healthy but be prepared for the onset and whatever medication you need and don't fear insulin when the day comes for it. You could become insulin dependent in a few months or a few years or even years and years from now. They might put you on type 2 drugs at some point too before insulin. It all is something you can't fully prepare for or know when it's going to happen.
Hi bjm,
I think you want to explore the possibility with your endo of starting insulin for meal time at least and maybe a small basal dose if you need that at this point. I think you said you have spiked pretty high after meals? Why wait when this is most likely what you're going to need anyway. And since you're in early phases, once you get your diagnosis, I would look for research programs which try to slow down or prevent onset of type 1 .
Thanks for the book recommendation...I'll check it out. I wish my PCP was on the same page..He was the one that told me I have pre-diabetes. I need a referral to go to an endo, so I applied for a study on autoimmune diabetes at the National Institute of Health. They contacted me and I went to the appointment out of state to get the testing, but my daughter lives nearby so it wasn't too inconvenient. I thought I would be relieved to know, but I'm not because I was thinking I could prevent D with diet and exercise. Now I'm not so sure and feeling a little down.
I think it must be really slow for me because I was having lots of hypoglycemia issues in 2007 and my BS readings were abnormal off and on since 2010, but only showed up on labs this march. I did read a couple of postings from someone on here that said if you are positive for GAD you may never get full-blown Type 1 diabetes. I don't know how true that it is..
Hi bjm: You have been given some excellent advice from TuD members! Although you have not yet been diagnosed with Type 1 diabetes, you may find my blog for the newly diagnosed useful, I hope. Although it is true that if you are autoantibody positive, which you are, diet and exercise are not likely to prevent diabetes, but on the other hand you have caught things very early and take actions that may help you (for example, as Meee suggests, you could participate in a clinical trial that is working to delay onset of T1D). Anyhow, I am glad that you found TuD and wish you all the best.
Yes, I have spiked high at 1 hour with meals and can stay that way at 2hrs depending on what I eat. I'm not sure if the endo at NIH will have me come in more often than the year she initially said or not. I think they ask that I followup with a doctor in my area. I'm not sure what she will say when she contacts me and if I can't get a referral from her then I'll have to try and convince my PCP. I must admit I am a little afraid of insulin and going low since my readings aren't always high.
Hi Melitta, I have been reading some of your blogs and they have helped me head in the direction I have. A couple of questions..are there actual studies that have shown that some people positive for GAD don't go on to get Type 1 Diabetes since I read that statement on one of the forums here? Also, is there a gradual decline in the beta cell's ability to produce insulin or does it happen quickly once blood sugar begins to get higher? I guess what I am asking is what should I expect other than looking at my parents and wondering if the effects of complications is my future. I will check out the newly diagnosed blog.
It can take years and years as far as I know. As far as I know , if you get the autoantibodies , it's unlikely you won't get type 1, but it's hard to say?
Hi BJM: Excellent questions, no simple answers. I don't know of any studies that have shown that autoantibody positive people don't go on to develop Type 1 diabetes (and I have read a lot of studies). The key thing is that to my knowledge no one has looked at the autoantibody positive individuals over many, many years. Type 1 TrialNet is probably the first study to really track autoantibody positive individuals, and it started in 2004. TrialNet has shown that the more autoantibodies present, the higher the titer, the sooner a person converts to full blown Type 1 diabetes.
If caught early in the autoimmune process, IMO there are things that people can do to slow the process, especially eating lower carb, reducing stress (time to take up yoga and meditation!), and getting regular exercise. Some newly diagnosed people here on TuD have taken as little as 3 units per day of long-acting insulin.
Hope this information helps!
My understanding is that GADA positive is found in non trivial rates in the non-diabetic population and hasn't been found to be particularly predictive of progression to T1. The situation may well be different if you already have been diagnosed with diabetes.
It's understandable that you're feeling down, as having a diabetes diagnosis of any kind is depressing.
But here's the other side of the coin to think about - if you hadn't been proactive about determining type, you'd be even more frustrated in a few years. You'd be starving yourself and exercising like crazy to try to correct your blood glucose, but it wouldn't be helping. Instead, you have the opportunity to research and come to terms with what will work for you while still have a mostly working pancreas.
Hi Brian,
Non trivial rates meaning detectable but not enough to be positive? I guess since I already have prediabetes it's likely to progress since there's not much I can do to battle antibodies. I just spoke to my daughter who is a nurse practitioner and she said that most of the endocrinologists she's worked with put patients on Metformin first then eventually add a long acting insulin. She said some people only use long acting for years and have stable blood sugars.
No I mean that a surprising number of non-diabetics test positive for antibodies. Whether they progress on to diabetes is unclear. And for the most part, researchers don't consider pre-diabetic as diabetic. Many LADAs go for years before progressing to insulin. That being said, Melittas advice is prudent.
I totally understand that, being worried about hypos while you still have insulin production. You have to discuss it with your endo when you get a permanent one. If your fasting is slowly rising and you're spiking high as well as having hypos it probably means you will progress at some point unfortunately and you don't know when and it is hard to know how to treat it at this point etc. You are totally aware of the situation and metformin might be a good start but that can cause hypos too and then eventually add some basal if the fasting bg goes up. You will be testing a lot and you will know if you start going to dka or having really high bg.
Thanks…I’m also afraid that I will be losing insulin production and not know it and go into DKA like so many people’s stories I’ve read about. At what number should I check for glucose or ketones. I think they make strips that detect both.
Don't be afraid you are well prepared for this with all of this knowledge. If you start losing weight(fat and muscle) while not dieting, bg goes higher, you start to have unsatiable thirst and extreme hunger which no matter how much you eat or drink it doesn't help, have severe yeast infections which don't respond to treatment/itching, visual changes, dehydration, constipation, nausea etc, these are all signs it is coming on. When you go above 250 and you have trouble breathing/deep breathing, you have severe dehydration, visual changes and extreme nauseau/vomiting/stomach pain(you can't keep food down) with moderate to high ketones you are most likey already in dka at which point you can go to the er or to your doctor to confirm it and get treatment. When you first go into dka it is often a slow process with all of these symptoms, it isn't going to happen overnight most likely. People often mistake it for the flu.
There is one meter that measures ketones as well, which I have, I've forgotten the name now. You can get ketone sticks at walmart or target. I never seem to get ketones now if I go above 250 because I have my basal insulin or maybe I'm just lucky. The idea is you keep an eye on your bg and if it goes above 250 range you can check for ketones in urine. For me I was in dka at 270's already and then as dka got worse I went higher, but I had all of these other symptoms first, the breathing started 2-3 weeks before I think and got worse. Hopefully it won't happen and you won't progress to full diabetes. :) ps. another symptom is craving sweet food/drink/candy because your body isn't getting glucose.So I finally heard from the endo today after having my appointment on July 2nd! She told me that I have LADA since I was positive for GAD antibodies. Then she stated that I will eventually need insulin because type 1 Diabetics need it. She doesn't know how soon..it could be a short time or be very slow. In the meantime I should keep doing what I am since I am very well-controlled just taking Metformin. I told her I am not taking anything and I am trying to eat lower carb. I then asked for a referral to an endo local to me and she said that I didn't need to see an endo because there is no treatment. She said my PCP can monitor my blood sugar control every 6 months. She stated that I will know when I need meds because I will get more symptoms, feel worse and higher blood glucose readings. I explained about the 265 and 200 last week and how I checked my urine and it was positive for glucose and trace ketones. She told me not to use those strips because they are hard to interpret and a lot of adults can have trace ketones and said nothing about the sugar in the urine. I proceeded to explain that I want to preserve my beta cells as long as possible and she said that there are experimental treatments, but nothing is approved and no endo would do anything different than what she is recommending. She ended with that I could come back in a year and don't need to sooner. I was quite upset at that point and said goodbye, then hung up. The message was clear...I have type 1 LADA and will need insulin eventually. There is nothing I can do, but watch what I eat and call her when I begin to feel bad and my readings are worse. Needless to say, I feel defeated.
Hi BJM: I am so sorry about what has happened! Based on the reading that I have done, it's pretty conclusive that early insulin treatment in people with slowly progressive Type 1 diabetes preserves beta cells. If I were in your shoes, that is what I would want for myself. And for example, Dr. Anne Peters (editor of the Type 1 Diabetes Sourcebook) would do something different--she would put you on low does of insulin. I know it is discouraging, but I encourage you to perservere.