Wow, you were able to see Dr. Bernstein...? Thought it took a really long time to get to see him. good for you. It's very off label to use these orals for type 1, specifically Byetta. I asked and asked for a year if I could use orals, every Endo said "NO way, you need insulin only." So very surprised.
Actually, I was surprised how easy it was to become one of his patients. After reading his book I checked his website and it said "still accepting patients." It took me about 2 months before I got my initial appt,, but now as a patient he is extremely accessible and very responsive. Truly a patient advocate and very unlike most Dr's I've experienced.
Regarding the "off label" use of Victoza/Byetta - check out my most recent post. I've seen amazing results, but not without potential risks.
Byetta is not an oral.
website states accepting very limited patients so good for you. what orals are you taking...? again, who's Rxing you all these for type 1 diabetes? orals and injectables? whatever works I suppose.
Yes agreed David, byetta and victoza are both injectables
Hi Terry:
I've been using a CGM since November last year and have been pretty good in keeping it close to flat lined between 70-100 most of the time. Recently I've been suffering some frustrating swings at night and needed to adjust my basal dosing amounts and timings.
I rarely go below 60, as the CGM warns me in time. I rely on glucose tablets to make small adjustments upwards, and 1/2 unit Novolog injections to make slight adjustments downwards. The combination of a low carb diet and meal consistency has helped greatly with meal control. I've also had an amazing experience with Byetta that I outline in my other post.
I definitely still have residual insulin production. My C-Peptide plummeted from 1.2 to 0.2 within 4 months of diagnosis but seems to have plateaued there. I'm hoping to prolong that as long as possible through tight control. Bernstein believes this can be prolonged indefinitely. We'll see. It's anyone's guess how my autoimmune destruction of my beta cells will progress.
Christopher
well, i'm sorry but if we, as type 1's, could FIND out there, anywhere, an endo who would Rx an oral (januvia), byetta, symlin (injectables) and insulin when newly diagnosed and had 30 lbs to lose and could work out to lower our BG's, we too would probably have an A1C of 4.7%. Unfortunately, for the majority of us, that isn't even a possibility or reality.
Hi Sarah:
Dr. Bernstein prescribes my medication. My injectables are: Levemir, Novolog, Humulin R and Byetta. My orals are Glucophage ER (2x 500g at bedtime). I was misdiagnosed as a T2 by my original endo until I insisted on the antibody tests. This was one of the key things that drove me to seek out Dr. Bernstein. He's told me that I can discontinue the Glucophage if I wish, but there is no harm in staying on it. I have increased insulin resistance in the early morning, so I like to think it helps counter that.
Christopher
yeah, like I said, if we as type 1's could find an endo who would Rx orals, 2 different injectables and 3 different insulins, especially at diagnosis, and using ALL of them, we too would have A1C's in the 4%'s. so, christopher, I'm glad this is working for you but this is not realistic for the most of us.
Amen, Sarah. Your frustration was exactly what I experienced with my local endo. I could go on for hours about how many things he misdiagnosed and all that he got wrong. It was only through my force of will and rabid determination, along with great advice from people on this site and information from Dr. Bernstein's and Jenny Ruhl's books and websites that I was able to get the correct diagnosis and treatment.
Until my diagnosis, my interaction with the medical world was limited to the occasional cold and my regular physical exam. Only after becoming a T1 did I realize how messed up our medical system is and did I learn to accept nothing at face value from a medical professional without doing research and getting additional opinions. Most notably, walk away from any Dr. that speaks in absolutes. Bernstein is just the opposite. He truly lives by the scientific method - test, measure and observe before to coming to any conclusion. He truly gets that we are all "experiments of one."
You put your finger on the very thing that did (and does) impress me the most about Bernstein: his relentless empiricism. Coming from an engineering background (as he himself does), it's the only way of dealing with the world that makes sense to me. And he has never steered me wrong -- not once.
And your point about doctors who deal in absolutes is right on the money, too. My present doctor said "I don't know everything" when I first interviewed him. That's one of the reasons he's my doctor.
i'm not condoning your actions, let me make that clear. the regime you're doing, 5 - 6 different medications, would probably kill some of us type 1's and clearly indicates insulin resistance - especially newly diagnosed, which also doesn't support type 1..but whatever. again, orals don't typically work for us and we're not put on an orals, 3 different insulins and 2 different injectables at diagnosis for that same reason. It's concerning when you post stuff like this here, especially for someone who is newly diagnosed with type 1 and thinks, "HUM, why can't I take all these injectables, orals and get my A1C down to 4.7% in a year." Type 1 doesn't work that way, not for the majority of us; our only course of action is insulin and it's very rare for a type 1 to be able to achieve an A1C in the 4%'s and some would say it's not safe. And to suggest you did this with diet and exercise is also not accurate as you're taking 5 - 6 different diabetes medications, 3 are specific for type 2's. Many, most of us already were living a very healthy life when initially diagnosed. So, enough about this on my end. Glad your stuff is working for you. There's not an Endo out there who would ever support this for a type 1 diabetic..that is indeed the truth. If not, ask on this site how many of us who were 'correctly diagnosed with type 1' and not through reading books and websites, were put on 5 - 6 medications, orals, injectables, 3 different insulins (when typically at diagnosis we're insulin sensitive)..when correctly diagnosed...none!
Omg enough already! Stop beating a dead horse! What works for him is great for HIM! Stop lumping everyone together everyone is different. Get over yourself Sarah.
if this conversation bothers you, Alicia, then please don't read it. it's a conversation not about me. true, great it works for him but typically not something the majority of type 1's could or should do.
"There's not an Endo out there who would ever support this for a type 1 diabetic..that is indeed the truth."
Dr Bernstein IS an endo.
No it’s not the conversation that bothers me Sarah it’s you in the conversation. You are making it about you. Speak for yourself stop saying type 1s can’t do this cant do that. Do you hear other people getting mad at what Christopher is writing. No so get over it.
mad, i'm not mad...not mad at all...so, you're incorrect. that's great this is working for 'him'. again, it's the same people who have type 2 that also come in and challenge everything I say, words from a type 1...wonder why that is? but, doesn't matter. we're all entitled to our opinions, doesn't bother me at ALL! Have a great day. :)
AWESOME Christopher, really well done!
Christopher I congratulate you on taking the different approach! I’m happy what you do works well for you and achieving an awesome a1c. I’ve only been lada/t1 for around a month and I’ve learned quite quickly that YDWV your diabetes will vary… Again congrats!
Hi Sarah:
I'm somewhat dismayed by your reaction and not sure how my "regime" is so different from most other Type 1's, or how it would "kill" others. I use one basal insulin (Levemir), one fast acting (Novolog) and one regular insulin (Humulin R) to cover meals. I choose between the latter two depending on how fast I think my meal will hit my bloodstream. Like any T1 or T2, I've settled on this regime through considerable trial and error.
As for my T1 diagnosis, it was made by my first endo and confirmed by Dr. Bernstein, my current endo. I'm not sure where your conclusion "clearly indicates insulin resistance" comes from, but both T1's and T2's can experience different levels of insulin sensitivity throughout the day.
I've experimented with Victoza and Byetta for it's "off label" benefit in managing between meal cravings, as per my endo's (Dr. Bernstein) recommendation, which he also writes about in his book. Byetta also provided me with surprising BG control benefits several months after starting it, which I can only surmise is due to having some remaining endogenous insulin production.
By no means do I mean to suggest I achieved this through diet and exercise alone. In fact, I share my very personal journey over the last year in great detail in my other post in the hopes of gaining advice from a wonderful community that I have found to be extremely helpful, as well as to share some of my experiences in the hope that I can help others too.
The intent of this post was just to share my progress a year from diagnosis and to highlight the positives. This is a horrible disease that regularly throws all of us curve balls, but the one positive thing it does for me is that it forces me to be hyper-aware of my metabolic state at all times and live healthier than before, because the consequences of not doing so are immediate and potentially dire.
I wish you all the best, Sarah.
Christopher