Oh, @Annette_13, I’m feeling this today! Before I saw your post I had called my doctor to ask for a bump up on my metformin to 1000 mg a day instead of 500 mg mainly because of the mornings. I’m going back in for a follow up in a month. I’m hoping for a good report, but if I don’t get it I’m going to first try much more carb restriction and talk to my doc about other options.
I got some good news. My liver enzymes are normal again and I don’t appear to have autoimmune hepatitis. I had a very bad virus in the summer that caused a huge three-day fever and I slammed ibuprofen and tylenol for a week straight, so the current theory is that I had some liver insult with that. I still haven’t had a Type 1 autoantibodies test, my doc is very reluctant to test for it. ¯_(ツ)_/¯
I have discovered I’m very iron deficient and it’s getting worse instead of better over the last three months despite taking iron. So I’ve stepped up my
Supplement game and I have an appointment with my GI next week. I suspect it will result in a colonoscopy and endoscopy.
I also just completed a diabetes education program through our local hospital and I was surprised at how “high” my standards for bg were compared to what the nurses were advising. I basically want the normal blood sugars of a non-diabetic person. One of the very nice nurses looked at my readings and heard me complaining about never getting below 100 and she gently told me I might never see those numbers again, but that my slightly more elevated numbers might still be fine. I don’t know exactly what to think, except BLERGH.
Ann - I may have missed you mentioning this but are you taking B12 with your metformin?
If you don’t consume enough vitamin B-12, usable folate can become low, slowing production of new red blood cells in your bone marrow. Eventually, this problem can lead to low levels of iron in your blood as old red cells wear out and die but aren’t effectively replaced. Metformin Affects Vitamin B12 - PCOS Nutrition Center
I am sorry the very nice nurses gave you that advice. They are wrong. However, if you continue to use metformin as your primary control they are probably right. A non-diabetic FBG three hours after eating should be about 83. A non-diabetic typically does not go over 130 at meals. Figure 1 in this paper is a nice representation http://www.seventhform.com/vdexdownloads/vdex-whitepaper-072817.pdf
Back in July the BeyondA1c forum was held. The goal of this forum is to try and change the thinking of the nice nurses you spoke with. Dr. Ralph DeFronzo who was one of the big sponsors 25 years ago to get metformin approved was there and he said “The most waste in type 2 diabetes is to continuously put people on metformin and sulfonylureas (glyburide, glimepiride, etc.). These drugs have no protective effect on the beta cell, and by the time you figure out what you’re doing, there are no beta cells left to save.” https://diatribe.org/the-diatribe-foundation-and-tcoyd-11th-annual-forum
This is part of the old traditional “wisdom” that is still deeply entrenched in medical education and thought. You’re quite right to reject it. Bernstein, one of the true pioneers in diabetes management, used to stand up at medical conferences and say that diabetics deserve to have normal blood sugars. It wasn’t uncommon for him to get booed by his colleagues for saying that.
Some attitudes change at the speed of a glacier. Or even slower.
Join the crowd! The standard for diabetes care in the US does not suggest keeping anywhere close to a “normal” BG profile (fasting BGs, postprandial BGs, or A1c). I’ve been told by an endo (who I won’t go back to) that I was endangering myself by having a “normal A1c” below 5.0%.
There are definitely medical professionals who encourage very tight blood sugar control, but they’re pretty rare in my experience. I have crafted my own control targets pretty much from others in the online diabetes community. And I do at least have a primary care physician who is happy and willing to support my (own) treatment plan, because she likes the results she’s seeing (i.e., my peripheral neuropathy went away, my lipid profile is outstanding, liver and kidney function is good, etc.).
@George44, I put myself on a B12 supplement, but I don’t believe I’ve been tested for it. Thanks for the tip. If my very aggressive oral therapy doesn’t yield and keep better results, I’m going to insist. Since I’m heading to my GI for a routine colonoscopy/endoscopy, he will be interested in the iron deficiency and looking for possible GI causes. I still suspect something autoimmune/inflammatory that’s keeping absorption from happening.
As for the inhalable insulin, I’ve read a lot about this and I’m intrigued. I was already planning to ask about the possibility of a basal insulin for me, but I suspect I won’t be able to get my doc and my insurance to go for a much more expensive treatment if the super cheap metformin seems to be getting them the results they desire.
@David_dns and @David49 I recently realized that I’m experiencing some serious guilt for not being more active and involved in my own weight and fitness before now, and I’ve been a little too accepting of lowered standards of medical care because I kind of don’t been I deserve it until I am thinner and more active.
I mean, I am a highly educated overweight 43 year old woman with a family history of diabetes and I didn’t take charge of my weight for years. Certainly I could have - with some moderate effort in the last 2.5 months I’ve lost 23 lbs. I don’t think I can keep that pace up necessarily, but I feel totally resolved now to losing an additional 75-80 lbs and being more active. I just have to do so, I have a little kid who needs me to live. The guilt/sense of not being deserving comes from the fact that it took this diagnosis to get me to this resolve.
But as much as I like my primary care physician, how do I even go about trying to find one that’s a bit more willing to experiment with me to try for tighter controls? How do I afford this if insurance balks? I asked about an endocrinologist and was basically told no way, they were reserved for difficult cases. If my average big readings are 118 2.5 months after diagnosis and I rarely get over 130 I am exceeding what my doctor expected - she told me she hoped for an A1C of 7 when I returned (I was 8.5).
Is there some list of docs in cities that are true believers that tighter control is better?
Hrmm, it is a bit of a quandary, and one I’ve found myself in. A lot of seems a crapshoot as to what doctors are available in your area. The only endocrinologist in my area just doesn’t believe that those with LADA should be on any insulin therapy until all orals are exhausted (so basically, she treats LADA as if its Type 2).
When I was initially diagnosed, I was diagnosed as Type 2, and so one of the doctors I started seeing was a metabolic specialist (since she specializes in Type 2 diabetes). She and my PCP know each other (small community), and unlike the endocrinologist, she is a strong proponent of aiming for “normal blood sugars” for all diabetics. So, between her and my primary care doctor, I’m pretty well taken care of, despite the lack of a competent endo here.
That being said, I fired my first PCP (the guy who diagnosed me) for the very reasons you’re talking about: he insisted I take a statin even though my lipids were good; he wanted my A1c to be between 6.0-6.5, and never lower than 6.0; he wanted me not to do any exercise other than walking. The guy was a well-meaning idiot, honestly. We tend to put doctors on pedestals in this country, and many of them don’t deserve such treatment.
So I went looking for new doctors, and I basically interviewed them. I made an appointment with the metabolic specialist and told her about my case. She suggested serious carb restriction and insisted I get tested for antibodies, so she was the main reason I found out I was LADA. I was so impressed with my wife’s OB (who is also a family doctor and now our son’s pediatrician) that I asked her if she would be my PCP, and she agreed. She freely admits to not knowing much about diabetes, but is happy with where I’m at and perfectly willing to support my treatment decisions.
I’m sorry it is so hard to get the “right” kind of doctors, but it really is important. So my suggestion is: start shopping and ask the tough questions. We pay doctors to help us; we don’t need to be obsequious or shy about our needs.
