I am 36 years old and was diagnosed as Type one 7 years ago. Obviously as you all know it’s a life changing learning curve where you always must stay on your toes. I was immediately referred to a doctor and have trusted them with my care since the start. It was an uncomfortable amount of information to consume but I figured it out and was put on MDI and would go and see them every so often. I am already an extremely healthy person but my A1C was 7/7.8 for the most part. Not horrible but could be better. Over the past few years my parents(who do a lot of research) encouraged me to ask about Dexcom which I brought up with my doctor. I got set up on it but when I would go to their office, they were unable to download the software because they did not have the tools. I also had to go to an outside lab to get my A1C. This was a red flag for me but I find when you are in an environment of an “expert” you tend to trust them. A little over a year ago I inquired about a pump and I am not quite certain what they said but let’s say I left feeling like they were for children. Recently I brought up with them that I wanted to have a child. This doctor knows I am married to a woman and said it would be best and less complicated if I had my partner carry. This was a devastating blow to me as I have always dreamed of being pregnant, but I really had no point of reference. In the most apropos way, I was seated next to a woman who was 6 months pregnant at a dinner party and she miraculously pulled out her pump. Stunned I asked her over for lunch to give me a crash course on her life with Type 1 and I quickly realized my experience with my doctor was one that was very much stuck in the cave man times. I quickly set up an appointment with her doctor and went through an actual “break up” with my doctor who berated me for getting a second opinion. I literally had to pull over and cry in my Prius. I saw the new doctor a few weeks ago. When she saw my meter, she said “I have not seen one of those in 5 years!” I am now on the Omnipod and have the best sugars I have ever had and am going to get pregnant in August, after I bring my A1C down. It’s been a really hard emotional roller coaster ride discovering that someone I trusted had me in care that was not up to the times and at the end of the day my body suffered because of it. Its been an interesting process where I feel like I am learning everything for a second time and I am so grateful that there are places like this to learn and write posts…I guess my take away would be, to not be afraid of asking what other people do for care. If I had not bumped into this woman I very well may have never been on the road to carrying a child and most importantly getting on track to have much better numbers…for me.
IT is frustrating to get old info! I got the “eat 50g of carbs per meal, 15g for snacks” line even though my BG was getting worse. I got the “since you’ve had some mild lows, you should quit exercising.” And my favorite, “you shouldn’t have an A1c below 6.5, it’s dangerous.” I found the best solution for me, as for you (although obviously different issues), was finding a new (younger) doctor.
If it wasn’t for information here and elsewhere, I’d have never realized I was receiving sub-standard care and ancient information. Glad you’re here now and finding some good experience about how to better manage diabetes!
Agreed! Sorry you had such a terrible start!
Welcome to the community Molly! You can certainly ask here any questions about anything, no matter how small you might think it is. When I joined here 9 years ago, I’d had T1 for 40 years,and I was pretty much in dark ages as to recent developments and techniques. We have an active pregnancy category, too (exciting time for you!)
Welcome Molly. I cannot tell you how much I’ve learned here, as well. My GP was actually quite good, but when my diabetes didn’t fir patterns he felt familiar with, he referred me to an endo that could help. His help was ‘ok’ but, to tell the truth, his advice was helpful only to a point. I changed endos, but I have some issues that I continue to struggle with, because of those part of the first endo’s advice that was not ‘up to speed’. I am now with an endo that appears much more up-to-date on all the latest research and information – though, will still be looking for the advice of my ‘peers’ here to verify or alter any advice I get – Nothing like the tens of thousands of hours of experience here to push the envelope!
Welcome to the community Molly. Sorry you had to endure 7 years of poor care … maybe you broke a mirror @ diagnosis?
As you continue with your life where D is a part of you, but not ALL of you, I hope you will get to the point where your endo is your advisor, but you are in control.
Wishing you all the best on your pregnancy!
Welcome to TuD, Molly. I think many of us have gone through becoming dissatisfied with our doctors and then changing to another one. There’s a valuable lesson in that experience. We are the ones ultimately responsible for directing our health care. We are the ones with skin-in-the-game authority and that gives us the right to seek medical counsel from whomever we choose.
If you pay attention to your diabetes and continue to learn something each day, your experience of your diabetes will soon outpace and overshadow your doctor’s. You are living with this 24/7 but your doctor will only see you for maybe 30 minute visits four times per year. Doctors are not gods and don’t have all the answers. They do have a legitimate and useful role to play, however.
Good luck with your plans for pregnancy. We’re interested in your progress and wish you the best.
I went through almost the exact same thing as you, Molly. My pediatrician actually diagnosed me when I was 15, then referred me to an endo. His office was great at getting me trained on all the basics, but I came to realize later, just like you said, they were stuck in cave man times. In the meantime, I had gone off to college and stopped seeing an endo regularly. Insurance changes for my parents meant I had to swap endos back and forth a couple times.
So one day I was sitting in his waiting room, looked around, and realized that all the old, sick, coughing (gross!) people in that room would be me one day if I didn’t make a change. I got through that appointment as fast as possible so that he would refill my prescriptions and I never went back to that doctor.
I found a better endo practice, one at the cutting edge of technological advancements. They were absolutely SHOCKED that I had been on MDI for so many years and pushed the paperwork for my Omnipod through as fast as they could. I then got set up with a Dexcom and I’ve never looked back.
My husband and I are also looking to become pregnant soon, although I’d like to lose about 25 lbs first, but I have no doubt that my current doctor is the best to care for me through it.
Gosh! Maybe we had the same doctor! I am mostly upset because they had the option and all the tools to learn modernized medicine but I didnt know any better. I suffered because of their trepidation to learn new technological advances. Argh! Oh well. Happy to have moved on but six years of high’s and lows could have been easily avoided.
Sadly, these stories of myopic doctors stuck in outdated treatment methodologies are far too frequent. It is one more example of why being your own advocate is so important. But it is also important to remember that we don’t get stuck in our own “conventional wisdoms” as well. If there’s one absolute truth I’ve learned about diabetes, it is that there are few absolute truths in managing diabetes. One that I’ve read often is that better control can only be achieved through pumping. One can achieve outstanding control either way. I have, as have many others. MDI and pumping each have their benefits and drawbacks, but ultimately you need to work with a medical team that is knowledgable about the latest tools and can help you make an informed choice, and who can help you decide what works best for you.
Unfortunately, that has been my experience as well. Thank goodness for my husband (Type 1 for 34 years) having to walk down that long road already so when my Type 1 Son and Type 1 Foster child came along I already knew to make sure what the doctor is doing makes sense. There is no way that a doctor can be in your shoes 24/7. I always take their advice as a SUGGESTION and then think it through things based upon what we know and what we are doing and the results. My husband has horror stories of doctors that really messed him up. I thought that might have been the dark ages, but even just a few years ago, I ran into the same problem with our foster child. I was dumbfounded when his doctor refused to give a 10 year-old a pump and when I called about his numbers being really high, he said to wait 2 weeks to get a good idea of how things were going before he would make changes. What??? I quickly got a new doctor as fast as I could manage (which was hard with medicaid and the complication of foster care.) But we managed to get what he needed and got him pumping and he was so grateful. I am sad that some doctors are not willing to get out of their comfort zone and really learn what they are doing and I am sad for those patients that simply don’t know any better. I make sure I talk to all diabetics and tell them to be more proactive with their health. I don’t care that I am pushy either, because some still do not know what options they have!!! My husbands A1C is around 5.5 and the doctors totally freak out when he has those numbers but it really is possible with a pump and a dexcom without being dangerously low all the time. It takes some intense management. He has only had one bad insulin reaction and that was 20 years ago before the dexcom and all he has learned. I don’t want to be too hard on the doctors because we have had a few good ones, but I do think that you have to be mindful of what is right for you and be constantly learning all that is out there. Doctors are “practicing” medicine and there is always wiggle room. We try never to allow diabetes to get in the way of anything our kids want to do. We just find a way to manage the diabetes safely when they are swimming, rock climbing, doing sports, etc. Why let your diabetes manage you? Manage your diabetes. I just want to give a shout out to all the diabetics as I am not diabetic, but it is part of my life in a big way. You are all amazing. I see first hand what you go through and the fact that you do what you do everyday is tremendous! Keep it up. Never give up. Stay healthy. Learn all you can. The sky is the limit. I pray for a cure!
I totally hear you. Its funny…My mom is a flight attendant and has been for 40 years! Each year she is required to take a week long training course on new features, safety issues, etc… I feel like with Diabetes especially, there should be a mandatory training session for them to learn about new technology. My endo didnt know how to download my Dexcom and couldnt understand the app on my phone. Those tools literally, with dedication, bring A1C’s down. Yes I am partially to blame by never seeking a second opinion, but my health suffered because they were unable to learn technological advancements.
What a story! What fortune to be seated next to that woman. I’m looking forward to hearing more about this journey you are about to undertake. Thank you for sharing what got you here.
WOW! Molly, I feel for you. I’ve had T1D for 42 years, and I’ve just branched out in the last 2 years to learn what is out there in the diabetes world. Let me say that YOU CAN DO THIS! I was diagnosed at age 12 and now have 4 healthy children. There was no CGM at all when I was pregnant, and I did not want to use a pump. I’m pretty private about my diabetes, and my control was decent. Long story short, I found Dr. Jody Stanislaw 2 years ago. She is AMAZING! She’s a Naturopathic doctor, but don’t be turned off by the title. She’s also been a T1D since she was 6 or 7. Since working remotely with her (phone calls, emails, and a daily/weekly forum where we all chat like in this blog), my A1c’s have dropped. I’ve been in the 5’s for the past 18 months. And my endo writes “be careful of lows” on every lab sheet he sends me. And I have a CGM. And I also use a pump now, but like Christopher said above, you can certainly have excellent control using MDI’s. Dr. Jody uses MDI’s, and her A1c’s have been in the 5’s for years. That said, I can pretty much promise you that I NEVER had an A1c that good in years past. And I can remember some really bad A1c’s too. While I was as careful as I could be before and during my pregnancies, I saw plenty of yucky numbers. But, thankfully, my babies were (are) all healthy. And I’m healthy, fit, etc. Not meaning for this post to be all about me, but I just want you to have more support. My endo is a good friend, and I plan to keep him- I go there for bloodwork and need him to renew my prescriptions here in Virgina. But, I plan to continue with Dr. Jody for everything else. She’s in Sun Valley, Idaho, and is having her first T1D retreat there next month. I’m going and can’t wait. Keep us posted on your progress! Pulling for you! Oh, and I know you’re using the Omnipod now, but I think it’s great that good control can happen via a host of ways. There’s just so much info out there!
I’m sorry you had to go through that. As someone with type one for 41 years, I’ve also had my share of doctors who were indifferent or actually harmful with their recommendations. This can take the form of physical or emotional distress… I discovered long ago that communities of others with diabetes - whether online or in person, are the best teachers and resources for me. I’ve learned 90% of what I know from experience - my own and others, and maybe 10% from doctors and even diabetes educators (and my last A1C was 5.9). I love the TuD community and others in the DOC who help me with all my wonderings…
I also wanted to address the bias your doctor showed in suggesting it would be “less complicated” for your partner to carry the baby. While this could be true, it’s incredibly insensitive to you as a person who wants to have a baby! Just because you are married to a woman, it doesn’t mean that either one of you carrying the baby is the same thing, and I’m disappointed that he would say that.
Wishing you best of everything as you prepare for pregnancy and please keep us posted!
I’m going to check out Jody Stanislaw, she sounds great! I’m someone who loves using holistic medicine, and it’s always nice to find others with diabetes who do too. Thanks!
Thanks so so much!