You have all been so helpful when I have posted a discussion before and I just wanted your opinion, please. I know it is not medical advice, but I just needed to hear an opinion of someone who would understand the situation a bit more. I'm athletic, thin, no family history, and no risk factors.
My numbers are not yet diabetic levels, I'm still ranging 105-120 (higher than last month) and pp numbers around 120-177 depending on what I eat, although there are some times I do not test because I'm too tired.
My question is at what point should I concern myself with the idea of medication? My regular doctor suggested metformin, although she still considers me a type 2, but seems to be slowly changing her mind. She mentioned that she did not think I would be able to prevent the progression because of patients with my test results and activity level,all 5 patients like me, have all progressed to insulin within 18 months.
I have made an appointment with the endo at Cleveland Clinic, but that is not until July. I can get into the University of Miami diabetes center in August. My sister, a nurse at UM, wants me to go there.
Do you think it is okay to wait? I'm kind of concerned because we are going on a family vacation next month, and I don't want to have to obsess about what I eat, but I know if I'm not careful I'll have headaches and want to sleep.
Any advice please. Thank you.
Well have you had the anti body tests? I would get a confirmation of T1 or T2 prior to getting therapy. In the mean time I would go LOW CARB.
Without visiting a doctor before you leave on vacation you have few options. Lab Mouse suggested going low carb for your diet. I agree. It will cause you no harm and may make you feel less lethargic. I eat low carb and don't feel deprived!
I suggest you go to Walmart and buy the inexpensive store brand blood glucose meter and 100 test strips. Test yourself every morning, every mealtime and 2 hours after each meal. Write these numbers down! You will learn how your body is handling the meals you eat.
Neither of these two ideas will hurt you and you may learn a lot about your metabolism.
Make appointments at both the Cleveland Clinic and UM. You can always cancel the second appointment if you're happy with the first one. If the first appointment goes poorly, you already have another option in the pipeline.
You may have to "obsess" about what you eat if what you want to eat drives your BGs crazy high. I wouldn't call it an obsession, however. I would call it making smart choices to feel better!
Hi! I am maybe a similar kind of person. I have a child with T1 and was diagnosed with T1 during TrialNet (diabetes research studies done on relatives of people with T1), but I do not yet need insulin.
So now I eat low carb *almost* all of the time. I am used to eating this way now and don't really crave/want a heap of carbs. Muffins and pasta and bagels and things do not look like food to me anymore.
It sounds like eating carbs OR not eating carbs---both might interfere with your vacation fun. Even without knowing you, I think you could definitely eat low carb on vacation pretty easily.
I think when you go to the CClnic or U of M (I like what Terry said---keep both appointments and cancel as needed!), they'll be able to test you for the antibodies that would show you have T1 or T2. That *might* change the treatment recommendation, and anyway is good information to have!
And I think it is OK to wait to go to the Dr. & enjoy your vacation. : )
You know the symptoms of diabetes---the thirst, the peeing AND it sounds like you already have a BG meter! You will know to get help before you are in extreme danger/DKA etc.
When I was first diagnosed---I think it was 7 or 8 months ago, I felt like..."so, should I go straight to the ER?" And the response was like, "No. Wait and see what happens. Meanwhile you could try to not eat a lot of carbs and take a Vitamin D supplement, but either way, this could take weeks or years to progress to the point of needing insulin."
Sorry--rambling.
Always excited to find someone in a similar-ish boat!
I've had the antibody testing back in January, but they came back negative. The endo at Cleveland Clinic said she still wasn't ruling out LADA because it was still early in the game and that antibodies might show up later or not at all. Because my c-peptide and insulin levels were low, she was still leaning towards LADA.
I've been testing and eating low carb, but now I think I have to go lower. If I cheat, even a little, I'm tired with a headache, and it ruins the rest of the day. I just get nervous with a cruise coming up.
At what numbers did they tell you to come back for insulin?
The antibody tests came back negative in January, but the endo is still not ruling it out. She said they may show up later or not at all, but she says LADA is still a definite possibility.
I'm already low carb now, but I think I may have to go lower.
Thanks
Hi Jenny: If I were in your shoes, I would not allow a doctor to put me on meds for Type 2 diabetes when there is little chance you have it. Insulin, even at very low doses, is best for people who very likely have Type 1 diabetes. Did you get the full suite of autoantibody tests (GAD, ICA, IAA, IA-2, ZnT8)? And even if you are autoantibody negative, Dr. Anne Peters (a highly respected endo and editor of The Type 1 Diabetes Sourcebook (ADA/JDRF 2013)) suggests treatment as if you have Type 1.
Regarding your upcoming vacation, again if it were me, I would eat low carb, hydrate well, exercise a lot, and test frequently. You just don't want things to go south.
Thanks. I was leaning towards waiting for any treatment until I got back to the endo, which ever one it is. I am also hesitant to go on a type 2 medication if I don't have insulin resistance. I have read about Dr. Anne Peters' recommendation of treatment as though I were a Type 1.
The antibody test I had done are: GAD, IA-2, and Antipancreatic Islet Cells, so I guess I'm still missing two more. Although the endo had said that since it was still early, they might not show up until later when the numbers go higher.
Since I'm a runner, I always hydrate, but I will be extra vigilant about the carbs. I just don't want any surprises on the trip. I'm hoping as long as I test often, nothing should change drastically while we are away.
Thank you so much for everyone's help and opinions. It makes me feel better about waiting until I get to the endo to make sure I get correct treatment.
Thanks. I'm outside a lot, running, so I am never vitamin D deficient when they check my blood. Are you low on vitamin D or do you take extra?
Your "story" makes me feel better about waiting until the appointments with both/either endocrinologist to decide on treatment.
Thank you.
Regarding Vitamin D, the recommendation I got is for 2000 iu/day. I am not Vitamin D deficient; this is just one thing some number of studies are possibly showing *might* slow the progression of autoimmune disease.
I like the sour lemon Vitamin D gummies from Whole Foods. This is an investment of about $10 month and is a yummy/easy enough thing to do. 2000 iu is a high dose, but not outlandish and not dangerous.
Have a great vacation!
I went to the endocrinologist yesterday.
A brief summary:
She is still not ruling out LADA as far as type of diabetes. All of my other test numbers are great, nothing even remotely suggestive of type 2 diabetes. My numbers so far are still pre-diabetic, A1C of 5.8. She is not giving me any medication as of yet. She will have her nurse call me to schedule a mixed meal tolerance test to check my insulin and glucose levels every half hour for four to six hours after having a meal high in carbohydrates that would normally trigger the intense headaches and sleepiness that I seem to get after eating when my numbers can spike up to the low 200's depending on how many carbohydrates the meal has. The results of this test will determine if she recommends acarbose for me, as she still thinks it is too early to prescribe insulin. She is afraid of my blood sugar going too low if I were to take insulin at this time.
I have not heard of too many experiences with acarbose. I did think it was interesting that she did not suggest metformin.
I still have an appointment set for next month at University of Miami diabetes center, which I have not cancelled. I figure I can use it for a second opinion, at the very least.
I guess I'll do the test and it seems as though I may just have to wait until the numbers get consistently worse before I can get treatment.
What do you think?
What they are testing you for is glucose intolerance. It is strange that they are discussing acarbose. Acarbose is an old medication that impedes your ability to digest carbohydrates. It has fallen out of favor and basically isn't even part of current treatment guidelines. Because acarbose impedes carb digestion, excess carbs reach the large intestine and usually causes excess gas and even diarrhea. It would be appropriate to ask for metformin as a first line treatment instead of acarbose. If there is any question you could say that you read the current practice guidelines at AACE and would like to follow recommended practice.
I agree with Brian. I tried acarbose back in 2007 when I was having symptoms similar to reactive hypoglycemia. I didn't have a good experience with it. I had a lot of gastrointestinal issues while taking it and every time I ate anything it seemed to get worse. I stopped the medication within a week of taking it. You are better off trying metformin IMO.
I agree that metformin would be a better idea. I also wonder why she isn't doing a normal gtt where you drink liquid sugar? You can do that yourself also at home.
I disagree with your endo that it is too early for insulin. Your average blood sugar is somewhere around 120, considering your A1c of 5.8. This is nearly 50% above an ideal level of about 85 - 90. If you are indeed Lada, the most appropriate treatment may well be low dose insulin.
Low dose insulin doesn't make you go low if the dose is adjusted right and it is low dose. There is actually less risk of lows if you use insulin when you still have your own production and you inject insulin to support what your own pancreas can still do. A low dose may be as little as 2 - 6 units a day of long acting. You won't know until you try it.... There is also the argument that starting insulin early (and keeping excellent control) may delay the deterioration of your pancreas.
There are two options for starting insulin. Either start with the fast acting before meals, or start with the basal.
I personally would opt to start basal and then add in fast acting if required later / to cover meals that aren't as low carb as otherwise necessary.
If you are not insulin resistant (and from your description it is unlikely, though should be looked into still), then metformin is not going to do anything.I think the decision to start insulin needs to be made in close collaboration with your doctor. And I never understand why we have such a double standard with regard to starting insulin. There are 80 million Americans with pre-diabetes who have similar (if not worse) blood sugars. We won't start insulin on these patients, heck millions of overt T2s are regularly denied insulin. Numerous studies have shown that initiating early insulin use in T2 improves outcomes. How is that any different than what has been seen in T1? Are we suggesting that everyone with pre-diabetes start low dose insulin? Should we just start the thin ones?
We have to be realistic, the vast majority of doctors would laugh you out of their office asking for insulin as a pre-diabetic. And we really have to ask ourselves what evidence we have for such an exaggerated double standard that would suggest initiating insulin on a potential T1 who isn't even diagnosable as diabetic.
This has been a very interesting post to follow. I am also thin, active, and eat relatively low carb (tried very low carb and got no improvement in my numbers and wasn't happy on the diet) and get pre-diabetic numbers. I have seen some improvement due to weight-lifting and running as exercise, but still stubbornly pre-diabetic. My antibody tests also came back negative and my fasting c-peptide tests have been low (0.62 and 0.82 with the 'normal' ranging from about 0.8 to 3). I should mention that while my A1C is pretty fixed just under 6.0 all these changes have improved my fasting numbers (down from upper 90's to middle 80's). My doctor doesn't know what to make of me. She is convinced I must be incredibly diligent with my diet since I only have pre-diabetic numbers yet produce so little insulin. As long as I don't go overboard, my carb intake doesn't seem to have much effect. I have been on Metformin since last April - can't tell if its helping, but its not hurting and I don't have any of the problems with it that other people report (I can take it on an empty stomach with no ill effects).
I wish I had some understanding of what to expect and what this is all due to. I think LADA is unlikely for me since I had reactive hypoglycemia all growing up and that went away after having gestational diabetes (ended up with it three times - always appearing early in pregnancy). I've always been normal weight (or thin - like when I was diagnosed with the reactive hypoglycemia) and since going off to college I've been active. It has been almost 13 years since my first round with gestational diabetes and that seems much too long for LADA to last with pre-diabetic numbers. My numbers have been getting worse over the years, but very slowly. My doctor expects that some day I will be on insulin but doesn't feel there is much to do at this point except keep taking the metformin. I have another round of bloodwork in April (I'm on a 6 month schedule since I am considered High-Risk). I just keep waiting and seeing. It is hard to stay focused with such a situation as everything feels out of my control. I try and check my numbers after meals and stay under 120 at 2 hours. Most of the time I can manage, but eating the wrong thing can easily spike me well beyond that. I should mention that all my other blood work numbers are great (including fantastic triglycerides - despite my sister having numbers that make doctors faint. Her blood sugar is fine, though. We joke that I got all her extra blood sugar and she got all my triglycerides).
I didn't mean to make such a long post, but it sure is nice to find someone with a similar story! Good luck to you.
Thanks CQJ, it is nice to hear someone else with a similar story. I actually get an a1c and fasting bs test tomorrow by my primary doctor. I'll get the results in a week.
I never did have gestational diabetes, both my kids were 7 1/2 lbs each and my health was great for both. I did find out that one aunt has type 2 and interestingly enough cannot tolerate metformin. I think they put her on glyburide. I tried metformin after I ran the NYC marathon. Yes, I ran the full 26.2 miles and it was incredible! I waited a week to try the metformin because my blood sugar dropped so much that I started to see grey and almost collapsed on 34th Ave in the city. I didn't even have time to test. This was the day after the race. So, I waited a week and then tried the metformin. My blood sugar never went below 100, but I was having trouble keeping my balance, standing upright, I was sleeping, nauseous,... you get the idea. I stopped it and emailed the endo at Miami and told her I wouldn't take it anymore. So we agreed to wait until things get worse before we try something new. Originally, my endo and my primary had wanted me to wait until after the marathon to try the metformin, because while I spike while running, I will drop very quickly, later. My fastings are usually between 110-125, but I can go down to 100 and up to 145 for fasting. I can easily spike to 180-215 while running or even after certain meals, which gives for wonderful, pounding headaches, but I still recover. I think my a1c will still only be pre diabetic this time around. I guess because I exercise and run a lot, plus I usually eat low carb, but I do admit to cheating once in a while.
My primary is surprised that I am not yet on insulin, when she first told me I was prediabetic, about 15 months ago, she thought it would be within a year and a half. I think mostly because the year prior to that test and earlier, my fastings were in the 70's and 80's. I'm grateful that she's very vigilant with me, we just have to get an accurate diagnosis of type when that time comes.
I am like you too, most of my family has a lot of cardiovascular problems and all the bad numbers that go along with it. I've had heart tests and blood work, and thank goodness my numbers are fantastic.
Good luck to you too! Hopefully we can figure this out.
Wow! Congrats on running the full marathon! I made my goal of running 5 miles about 2 years ago.:) I much prefer weight-lifting to running, but running does seem like a good way to lower my sugars on average. Sorry to hear the metformin had such a bad effect on you. At first it made me unbelievably sleepy, but after a week or two that went away and I haven't had any issues with it since. At least now I can feel like I'm taking medicine for my condition and that helps me to feel motivated.
I used to have hypoglycemic problems once I dropped below 70, but now I start not feeling good when I drop below 100. Everything does seem to be evolving and it is tough to not just give up. Sometimes I feel like I am on this slow moving train and I don't want to reach the destination, but I'm impatient with the not knowing when I will get there.
Good luck with your latest round of tests. Your fasting numbers certainly aren't looking good and you are lucky your doctor is being proactive. I was so grateful when my doctor didn't treat me like I was crazy when I insisted on further tests.
Hi Jenny, I'm a little curious and sorry if I missed it in your posts- did you get the mixed meal tolerance test completed? Your story sounds similar to mine, along with your fasting and post meal numbers. The only difference is I tested positive for GAD antibodies and negative for ICA. I wasn't tested for any others and my c-peptide was normal in July when tested. I don't know much about Metformin but heard that there is a certain formula- long acting I believe- that is tolerated much easier. I haven't started meds yet because the endo I went to in October is waiting to see the results of my A1C the end of the month. I saw my average rising, so I have an appointment on Jan 30th with a new Endo that has done a lot of research on diabetes and is suppose to know a lot about LADA. Maybe you should get a second opinion too, because I think it's important to keep Glucose numbers down to avoid further progression. Your story sounds like a person who has slow onset type 1, so I think you should try to get treatment as soon as possible. That is what I am doing! Take care and best of luck to you :)