I've been debating whether to jump in and give another perspective and decided to risk diving into this beehive of potential controversy. If you've already tested positive for antibodies, then you are likely marching toward a date with T1 destiny. I think your endo might be encouraging you not to play the end at the beginning. I know there are many people on this site who will state as fact that obsessing about your blood sugar now and trying to keep it below 140 all the time will help you "preserve beta cells," but it is my understanding that, for T1s, that is simply a theory. From my own experience, which is all I can speak to, I'm much happier when I don't obsess about my blood sugar in the way I did when I was first diagnosed. Maybe my beta cells are dying faster, but I'm okay with that trade-off because it helps me live a more peaceful life.
If I could magically go back a few years and be in shoes similar to yours, knowing what I now know, I think I'd take his advice, with one exception. I'd eat the way I want to eat (not necessary big breakfast, etc.) and I'd monitor my BG a bit more often to see if any physical issues I might be feeling correlated with my BG. Other than that, I'd do my best to eat healthy, exercise and not worry just yet about being a T1. So much easier said than done, I know, I know!
BJM2363, sounds like we have the same endo. Basically my endo has given me the same advice, two caveats--1) low (no) carb diet, 2) test 2x day. He's still puzzled that with my reduced maintenance steroids for RA, increased activity, and my strict diet and 50 lbs. weight loss that my blood glucose levels are creeping upward instead of decreasing. I had awful side effects with Metformin and Metformin ER and he was not happy. He still feels pills are the better route than insulin even though I have a strong family history of diabetes and a very strong history of autoimmunity problems. He still refuses to run antibody testing and holds firm that I am Type 2. So until I have a DKA event or my pancreas plays out, I guess he and I are at a "High Noon" standoff. I am in the process of searching for a clinician who will start from scratch with a fresh pair of eyes rather than just review my file.
I think there is ample evidence that you get better outcomes by early and aggressive management of your blood sugars as a T1. I think one of the key findings from the DCCT study was that tight blood sugar control helped sustain your beta cells. Here is what one of the key papers said:
Intensive therapy for type 1 diabetes helps sustain endogenous insulin secretion, which, in turn, is associated with better metabolic control and lower risk for hypoglycemia and chronic complications. These observations underscore the importance of initiating intensive diabetic management as early as safely possible after type 1 diabetes is diagnosed.
There is definitely research that shows early actions can preserve beta cells and that preserving beta cells leads to easier management. It is more than theory.
Here is just one quote from a 2011 article over at UCSF, where Stephen Gitelman, MD is conducting research into therapies to slow the destruction of beta cells:
The patient can thank surviving beta cells for the honeymoon period. When the disease is first diagnosed, usually the remaining beta cells in the pancreas are sufficient to release enough insulin to tightly control glucose levels in the bloodstream —with a little bit of help from injected insulin.
"Conducting research" is not the same as a confirmed fact. No question that honeymooning makes it easier.
My primary point is that, when you have a person who is so early in her diagnosis that insulin is likely going to be incredibly difficult to navigate without going low, perhaps attempting to find some middle way and enjoy life rather than obsessing about BG is a viable alternative.
Just had a chance to look at the article. His research includes "evaluating a humanized form of a monoclonal antibody directed against the cell-surface protein called CD3," so unless the OP is going to try to get into his study, it doesn't really address the issues she raised. I guess I keep beating this drum because I think the approach advocated by a certain segment of folks on this site can really end up making the early diagnosed patient feel like, if they don't obsess about their numbers staying under 140 and the T1 actually progresses as it is going to do anyway, they are some how to blame.
I’ve been dealing with T1D for over 30 years now. I’ve always been interested in good control and willing to prick my finger many times per day. Early on I had MDs that believed the disease progression was inevitable and paying too much attention to BG numbers and other data as being obsessive.
Now, it appears that doctors are happy to see my “obsessive” level of attention to D as they can see a better A1c without a rise in hypos.
One person’s “obsession” is another’s "meticulousness!"
This obsession argument is often posed by people that do not like following the details of their daily metabolism. I know there’s a variety of views on this issue and I respect people that don’t want to follow the warp and woof of their blood glucose numbers.
I only wish they would return the favor and not mischaracterize my behavior as obsession. We all make choices and must live with the consequences. There are certainly no guarantees with D, but I prefer to enhance my odds by keeping my BGs as close to normal as possible.
Terry, I am in agree with you. I was checking my BGs a total of 7 times a day. I felt it gave me a better understanding of where my spikes and lows were with sugar levels. Twice a day is not giving me the clear picture that I need to control my disease properly.
Thanks for the feedback. I forgot to mention that he also recommended the Mediterranean diet. I happen to have a cheap meter and a one touch, so I decided to do the one reading a day for the endo report and use the other meter to track what certain foods do to me since I will be following his suggested diet. I think he is focusing on the diet to determine type 2 versus type 1. I explained to him that I was watching carbs somewhat and eating no more than 30 per meal. He said not to worry about carbs and just eat healthy.
I didn't intend to start a debate about whether I should take action to preserve beta cells or start on insulin. I appreciate everyone's different viewpoints and I can find valid points in each. One thing I would like to clarify is that I certainly don't think that tracking my blood sugar and trying to eat to my meter is obsessive. I look at it as being pro-active- not sitting around blindly following a doctor's orders until my readings become high enough to treat. I agree that whether or not a person decides to go on insulin, take metformin, eat low carb or a combination of the above is a personal choice. I am very grateful that I can come on this forum and ask questions to get well-informed answers that allow me to have those choices. Thanks again!
bjm - Sorry to stir up debate in your thread. I don't see respectful debate as something to be avoided. All out flame-wars are another thing.
I mentioned the low carb dietitian in an earlier comment. I don't know if you followed the link but I think her experience might help you. Here is a link to a post she made a few years back. It relates her story as she started to see some anomalous blood sugar readings.
Good luck with whatever path you decide to take. You are smart to look to a forum like this to get the patient's point of view.
I agree that debating these issues helps us all see things more clearly for ourselves. And don't get me wrong, I test 10+ times a day and have a CGM. I suppose my use of the word "obsessive" related to my own issues, combined with the "never over 140" line. I give myself much more leeway on the numbers than I did in my early days.
I hate to say it, but you need to disregard most of what your doctor said. The advice in this thread is exactly right.
The only way to keep your numbers in line is to test often. Based on where your BG peaks at 30 carbs, adjust your carbs accordingly and test again. Try 20 carbs or 40 carbs and see where your blood sugar peaks. You will soon find the "sweet spot" (which of course can vary and change over time). You also need to see where the numbers fall at different meals and different times of day.
I'm surprised that even with some readings above 200, he still considers you "pre-diabetic," particularly since you are already eating reduced carb. If you ate what the average person eats, your numbers would likely be far higher.
I don't know about others on this site, but I routinely have numbers over 140. I don't obsess about them, but expect them as part of the disease and my overall therapy plan. For me, numbers are just numbers. They help me make decisions about what to do and they are only a part of the bigger picture.
However, I think the point of trying to preserve as much beta cell function as possible still stands. When and if the cure(s) arrive, there may be many different paths (vaccination, stem cell therapy, AP, etc). Having a larger number of functioning beta cells can only be a good thing.
Trying to understand what is going on with bjm2363's blood glucose is not well-served (IMO) by a "1 test a day, come see me in 2 months, then every 6, and we will probably put you on Metformin" plan. It just strikes me as a conclusion before the evidence is in.
I highly value a target of nothing over 140 as it helps me aim at a worthwhile goal. The "nothing over 140" target helps me get a high percentage of time in range with minimal hypos.
Yet, my last 30 days of CGM shows 21% of my time is spent over 130. I'm a realist, too. I have T1D and will never have the exquisite control of a healthy endocrine system while I manually try to simulate mother nature!
Your endo is unfortunately typical. He is happy to see numbers in the 180s plus and won't be concerned until you are over 250 (this is more than double normal).
You are diagnosed with LADA. That means adult onset type 1. Your pancreas is failing and it is going to get worse. Why on earth wait and do nothing except eat mediteranean without worrying about carbs and test once in a blue moon. There is n o useful information you are going to get.
State of the art treatment (from Joslin and others who have a bit of nous) is to start all new people with diabetes (particularly LADA) on insulin as early as possible to maintain normal blood sugars. Normal being fasting < 95 (ideally in the mid 80s) and post eating never higher than 120 (at worst 140). If you are on insulin, and honeymooning, this becomes relatively easy to do with a bit of self experimentation and care with diet (lower carb).
If you wait until your blood sugars are persistently elevated you are causing damage, ongoing damage, including killing off your remaining beta cells.
I would test more frequently than once a day. I would be controlling what I ate carefully.
I would also seriously consider sacking this dr and finding one that will get you on insulin early (probably very low dose, but that's fine), and be proactive in keeping you healthy and complication free.
I think you should also do some testing to find when you peak. YOu could test every 15 minutes from 1 hour after eating to find the peak. thereafter that is when you test.
This is your body, your diabetes, and you should be in the drivers seat on how you manage it. Waiting for it to get worse and to get complications before you do more doesn't make se4nse to me.
Shadow, with all respect, I disagree that starting insulin early is going to be incredibly difficult. Today's modern insulins are quite stable. It is easy to add in a basal of a couple of units to bring the whole blood sugar curve down. Bolus can be dosed in as small as 1/2 unit, if needed.
I started insulin early. I am so glad I did. My initial daily dose (6 years+ ago) was 6 units a day. It's way more now... :)
Low doses of insulin to support the struggling pancreas are much less likely to result in lows than high doses of insulin (with no remaining pancreatic support).
Also being on insulin is liberating (that was my experience). I no longer needed to watch high blood sugars, drink lots of water and pray they would come down. I had the actual tools needed to get and keep my blood sugar where it needed to be.
Each person with diabetes needs to find their own path… so what I choose to do may not be the same as what someone else chooses to do. However, we should all have the information on hand so that we can understand and make our treatment decision based on sound and as much factual information as possible. [mind you science and facts do change over time, but I think we are lucky to live in a time when many facts do seem quite well established / proven].
This is my second endo and first visit...actually third from when I saw someone back in 2008 for hypoglycemia type symptoms. I don't know anyone in my area that knows how to treat LADA. I talked to someone at Children's Hospital of Philadelphia (CHOP) and the person doing research told me that it depended where you live on what type of treatment was used..if at all. She mentioned that in some European countries LADA patients are put on insulin right away and some states in the US they use Metformin and others take a wait and treat approach later. So finding someone who will take an aggressive approach isn't easy. Also, the endo told me that I really only need to be concerned with high readings at the 2 hr mark and if I peak over 220+ at 1 hour and come down under 150 at 2hr. that is fine. As you can see I am getting mixed information, so I have to sort it all out yet.
Okay so I STILL think you need to find a much more aggressive endo willing to put you on a treatment plan involving insulin. You can use a low dose (like maybe 1:30 or 1:25 or something like that for an insulin to carb ratio) , it's not gonna hurt you when your numbers are saying yes you need it. You shouldn't have to restrict your carbs so dang much, that's not a fun time. The one you have now is super crappy compared to anything else .Testing 1 time a day? You won't learn anything from that, the bare minimum should be 4 times a day if not more (I do 6-7 times a day and I know I could test more but I'm happy with my results from that). I also am of the "under 140 I'm fine with it" club and I rarely go over 140 mg/dL unless I'm really dehydrated (something I've run into with my random biliary issues) or under dose my insulin. It's not obsessive or harmful at all and it's in your best interest to be treated properly, because right now it sounds like there's more harm than good in your situation. You're not resting your pancreas at all by not taking insulin, and it seems like no doctor is giving a sh*t in your case and that's not helping you at all. You need to take action early so the control is easier when your diabetes progresses.
