I am a new member and have never posted. I just usually read through the forums. I was diagnosed with type 2 about 2 years ago at 31. I am not overweight at 5'5 and 135lbs. I had gestational diabetes with both of my pregnancies. Both could not be controlled with diet alone and I used glyburide with my first and needed insulin with my second. After my first pregnancy it went away completely. I lost about 40 lbs before my second pregnancy and thought maybe I won't get it this time. Wrong! Still got it and had to be on insulin. I cried when they told me! I could not imagine injecting my pregnant belly. It turned out not to be that bad. It's true when they say they finger pricks are more painful. At my 6 week checkup my levels were pre-diabetic. I was worried but figured I had years until this turned in to full-blown diabetes! Wrong again! A year later I was diagnosed. I would go through periods of eating very well and exercising and then I would fall of the wagon. I finally asked my Dr. to prescribe some metformin because I was afraid of the damage I was doing. It helped a little. I can eat very few carbs like no more than 10g per meal. Anything more and I am in the 200's. She sent me to a nutritionist who told me I needed to eat 45g per meal. When that didn't work she gave me the max dose of metformin 2000mg. Still no real change. My fastings are usually about 180. She doesn't seem concerned. My a1c improved slightly from 7.9 to 7.3 and she says that I am stable! I finally asked to be referred to an Endo. I saw her about a week ago and she prescribed Glipizide. Only half a tablet before dinner. I definitely helps but after researching it I read that a lot of people don't recommend it because it kills your remaining beta cells quickly. I emailed my doctor and asked her about this and whether insulin is a better option. She wrote back that yes people say that about the drug and that she will prescribe me insulin if I want it. But no real opinion! I don;t know what to do! I feel like all these doctors are not helpful at all. It's basically all up to me to decide what treatment I need! I have never had any antibody testing or anything. I have one uncle in my family with type 1 but the doctor said it's not related. I am so frustrated! I want to be around for my kids and want to do the best treatment I can. I don't have much willpower and don't know if I could live the rest of my life on a super low carb diet. I currently eat pretty low carb. I am also scared of all these new medications that have not been around for very long and are possibly causing cancer. Anyone else in a similar situation or have any advice? I am not scared to inject myself but I am scared of lows and possible weight gain. Should I just stay on the glipizide because my pancreas is probably going to burn out anyway and I'll end up on insulin ? I also feel like maybe I didn't try hard enough. Maybe I should go on a super low carb diet and exercise everyday! Thanks for listening :)
I'm really glad you found us. I'm sure others will pipe in, but I think you are very wise to be concerned. Women who have Gestational Diabetes (GD)) are much more likely to go on to get Type 1 diabetes. And it is all too common to misdiagnose diabetes. I would encourage you to be your own best advocate with your endo. I think it is perfectly fine to move to insulin. We have a right to a normal blood sugar. I think it would help to go on a low carb diet and exercise, but in the end, sometimes we just have diabetes and our poor pooped out pancreas just doesn't work right.
Thank you both for responding. My endo is on vacation but I made an appt. with her to discuss all my concerns and get started on insulin. I have Kaiser so I am hoping they pay for those tests. It would make a lot more sense if I were type 1.5. Maybe that will explain why I am on the max dose of Metformin and it does nothing. I also feel like it has progressed so quickly.
I would definitely do the antibody test to see if you could be Type 1. For me, insulin is by far the easiest way to control the blood sugar. Keep asking questions and get the tests you need. Good luck!
There was a study I saw a note about in a Diabetes Forecast "sidebar" that showed that T2 put straight onto insulin had better control or something to that effect. I'm sorry I don't have a link to the study or even the DF page (it was in the front, "newsy" section) but it made me wonder if the aversion to shots has infected the medical industry a lot since it seems to be an afterthought more than an option. Particularly if you aren't sure about the type, you could still see if insulin works for you and, if you can make it work, you may be "fine" with it, rather than slogging along in the 180s...
I wouldn't shy away from insulin because of worries about lows. Using an appropriate insulin regimen will help preserve your remaining beta cells, allow you to maintain normal or near normal blood sugars most of the time and have a lot more control over your own treatment. Adjusting your own insulin doses takes some study (Gary Scheiner's "Think Like a Pancreas" and John Walsh's "Using Insulin" are good resources) and diligence. Balancing 3 or 4 pills all of which work indirectly using different mechanisms takes an MD.
You are clearly willing to pay attention and work hard. If insulin is appropriate for you, it is the best tool available.
I have been T2 for many years and used glyburide for most of that time as my beta cells slowly rode off into the sunset. I started insulin about a year ago (at my own request) and the results have been . . . well, I can't say enough good things. My A1c is the lowest it has ever been since dx and I am physically better in so many ways that I would bore you listing them. I wish I had done this this years ago and that's no exaggeration.
As others have said, you need to take charge of your own health -- no one else has as much at stake as you do.
If you haven't done it already, you might consider reading the books listed below. They both contain a wealth of excellent guidance, and both authors are Type 1s who must manage diabetes every day themselves, not simply "experts" dispensing learned opinions.
Gary Scheiner, Think Like A Pancreas (Boston: Da Capo Press, 2011)
Richard K. Bernstein, Dr. Bernstein's Diabetes Solution, 4th. ed. (New York: Little, Brown and Company, 2011)
Just as an aside, the world-renowned Joslin Diabetes Clinic now starts every newly diagnosed diabetic on insulin right away. It's definitely not something to shy away from if you need it to achieve proper control.
You've discovered an important truth about doctors: they have opinions, just like everyone else. Ultimately it's up to you to take control and make the choices that are appropriate for you and that work.
You've come to the right place! This community is all about supporting each other; it's why we exist. Please stay in touch and let us know how you're doing!
Hi, I have type 1 but my story is much like yours, I was dx with GD in both of my pregnancies and then 2 yrs after having my son at age 37 I was dx with type 1 (LADA). Actually I was dx as Type 2 by my PCP but I saw an endo who did antibody tests, etc and got a correct dx. I would urge you to do the same. When I was dx with GD I was in shock, I am thin, workout, don't eat a lot of unhealthy foods, gained very little weight while preggo. It just seemed strange. Considering all the type 1 in my family I wish I would have pursued it a bit earlier but live and learn! I take Lantus and Humalog, I am pretty insulin sensitive and on fairly low doses. I have not gained any weight (except for the few lbs I had lost right before dx) and while I did have a lot of lows the first few months I am doing better with that lately (knock wood) Good luck! Also wanted to add finding a good endo is key! I researched like crazy before picking one and she is wonderful! she did not even hesitate to order the additional testing, she pretty much looked at me and said she would be shocked if I was actually a type 2 especially based on my family history (brother and multiple cousins with type 1, some dx later in life like myself)
There is definitely a bias against insulin in the medical community. There was a video posted some time back presenting the results of a 4 year study into attitudes about diabetes. They studied both patients AND doctors, and one of their discoveries was that doctors hesitate to put patients on insulin because they think patients are MUCH more afraid of shots than the patients themselves say they really are!
I agree with what everyone else has said, you need to be antibody tested to see if you are T1. I think you have made a wise choice asking to be on insulin. I have been T2 for a very long time and on insulin for the last 2 years. Knowing what I know now if I could turn the clock back I would have started insulin much much sooner.
My situation isn't exactly like yours - I'm male, among other things - but I think that I could usefully add my opinion.
First of all, taking my realistic fears of long-term serious glycemic damage into account, I would not want to live with an HbA1c of 7.3 on a long-term basis.
When it became clear that metformin+Januvia weren't lowering my plasma glucose enough, my GP switched me to insulin, even though I do have a more-than-normal fear (dislike?) of needles. I'm happy I switched. My glucose is much closer to normal, which means that I am less fearful about the future; I am also less fearful about pancreatic cancer or any other dreadful pancreatic side-effects from the the treatment itself. (Yes, I am aware that exogenous insulin analogs and especially Lantus have also been under suspicion, but after having checked out some of the original research myself, I'm more worried about hyperglycemia, earthquakes, and crossing the street.)
It will probably take you a few weeks or months to get your insulin regime stabilized, and to get used to the whole business, but I am generally much happier now that I'm on on insulin, and you may be, too.
In the end, the tests may confirm that you are T1. That would eliminate questions, but in the end what really matters is getting appropriate treatment. And even if you get tested and don't come up as T1 (LADA), you still need proper treatment. And in my mind, fastings in the 180s and an A1c of 7.3 is not stable, it is out of control diabetes. And so I would encourage you to be your own best advocate. Yes, push to get a proper diagnosis, but also demand to treat to blood sugar goal that allows you to live a long and healthy life (that is Not an A1c of 7.3%), and push to get the proper treatment. You can read about how I started insulin and perhaps that will give you some context.
Hi ckurpiewski: You have gotten some excellent advice here at TuD, and I am glad you have an appointment with your endo. It is important to get testing to see if you have Type 1 diabetes, but the most important thing is getting excellent treatment and care, and in my opinion that means insulin. About 10% of cases of gestational diabetes are "autoimmune gestational diabetes" (here is a link to my blog about autoimmune GD) and here is a link to my top 10 tips for the newly diagnosed T1 which I hope you may find useful. Good luck and let us know how it all goes!
First you need to get tested for antibodies and then find a new endo maybe because they really should test you for that right away. If you can control your bg on meds that don't harm you like metformin maybe and with diet or exercise that might be ok. But if you need to be on insulin to do it and to prevent getting worse or going into dka etc. you have to do it. I don't think 180 fasting is ok at all, that is very bad and so is 7 and up a1c, you're damaging your body at those levels. I don't think type 1.5 has much meaning.. it is not a even a valid diagnosis and it just confuses people making them think that people can go back and forth between types I think. Either way, whatever type you are, insulin may be the best thing for you to control your bg and preserve beta cells. Btw, even with insulin I still have to eat a low carb diet to keep my bg as stable as possible, you may end up having to do that anyway.
I am so glad that you wrote in, I had GD with my second son and was told nothing, that was 25 years ago. Now 13 years into the diabetes journey, I am learning that in order to get what I want, feeling good and being healthy, I have to advocate for myself, harder than just asking questions. I have a PA as a Primary Care, should probably say, I live in a small town where docs are in short supply, also. Also we have one doc who is a diabetic himself, he is our most knowledgeable but truly only about himself. So, my best advocate is the diabetes educator, and he is GREAT! But I want more than that from my medical team. The closest endo is 200 - 350 miles away, not a day trip and costly. So I have been on a miriad of oral medications, and up until about 6 months ago, they kept my numbers in check. My last A1C was a 6.3....good enough, but not good enough for me. I had been on insulin when I would take cortison injections for my knees and arthritis, maybe 2 - 3 times a year. I felt great, I was showing 5.7's for A1C's and losing weight as I should. now I want to go back to the insulin, and was knocked down the first time, but I will be more demanding this time. It is my health, my life, and I should be able to be healthy even if I am a diabetic, with anemia (life-long) and arthritis throughout my body. So my point here, is to advocate for yourself. Have information, reasons why, and don't give up, your health and life are worth it.
Hi there, Ms. Newbie! Welcome to our site. I'm sorry to hear of how you ended up here but am glad that you chose to act in your favor without accepting things blindly.
I can't give expert advice because I'm not an expert! I'm just one who has lived through diabetes for too many years now. I have personally experienced and have been told that insulin does seem to increase your hunger. A definite yes to that. As to eventually ending up on insulin anyway; well, I don't know that I would rush the inevitable. It may or may not turn out that way. Why tempt fate? You may save yourself from unnecessary treatments. We just don't know what miracle is lurking around the corner! One of the things you are doing wonderfully is to question without blindly accepting what someone tells you just because they are medical professionals. If it seems to be a perfect fit, asks questions and go with it if that's where all your searching leads you. Good Luck! Lois
Ditto - I acannot give advice. After 30 years I am now on insulin and dam glad I am.
The glyburides/glimpiride pills do not impress me as you have no way to control and manage them and one ends up eating on a railroad schedule to keep under control and prevent lows.
Yes insulin requires training and learning to use. But its dose is liquid and variable and one can diet and manage.
I wish I had gone insulin 30 years ago. Metformin is a differnet issue and I do not see that in same class of "oral" pills like glyburide, glimpiride, starlix.
Otherwise as stated, you are a the right place for comment, information and experience sharing that can be invaluable.
Wanted to give a little update. I had an appt. with my Endo this morning. She was totally against testing for type 1.5. Said she doesn’t like to pigeon hole people and that the tests are not really reliable especially the c-peptide since normal insulin levels vary from person to person. She also said it doesn’t really matter what matters is treating the high blood sugars and called my case mild! I told her that I still wanted the testing done for my peace of mind. Thankfully she went ahead and ordered the lab work for me and I will go in tomorrow to get it done and will soon have answers hopefully! She started me out with Humilin 6 units at bedtime. I will let you all know how it goes!! Thank you all for taking the time to respond and give your advice! It’s great to have a place to talk to others who know what your going through!
Frankly, I would seek a new endo. She is not very knowledgeable. Antibody tests ARE reliable and it DOES matter what type you are and the concept of having "a mild case" doesn't mean anything at all. Also Humilin is an outdated insulin which doesn't work as effectively as modern MDI insulins. And fastings of 180 are a real cause for concern as are spikes in the 200s. You should not have to virtually starve yourself when, as a very likely type 1 you belong on MDI (fast acting insulin like Humalog, Novalog or Apidra for meals and Lantus or Levemir for your long acting background insulin once or twice a day).
I see you live in the Bay Area. You don't have to put up with crappy medical care!
