I was trying & I was asking for help. They have no clue what to do with gastroparesis so easier to take it out on me. When I first talked to the pump trainer, I told her I wasn’t looking for much help and told her why I felt that way - she said that is typical of doctors. They can’t help so it is easier for them to treat you like you are noncompliant.
I would rather have strategic conversations also. Now I just don’t give details but will say what my goals are. The endo I went in Dec didn’t have any other patients with their pump target set at 85!
I don’t blame you for not messing with the strip doctor!
jn - I enjoyed reading your extended commentary. It frustrates me that doctors don’t want to seek near normal blood glucose. They so fear the hypos that they probably prefer 120-160 as a target.
At one recent appointment I told my endo that I was using less insulin and had better control and lower averages. He asked how many hypos under 50. I told him 12, which I thought pretty damn good for 720 hours of T1! I had one ten day stretch with no excursions below 50. The Doc was unimpressed and fedback caution. I asked if he would support me with a goal of an A1c < 6%. I’ve been as low as 6 but never below. He didn’t think much of the goal.
The docs fail to realize that some of their patients are willing to do the work and get better numbers.
I like your goal of 85 before the next meal. It’s a good one.
I think that endos are pretty mathy? Both of the endos I’ve seen have astonished me with some brief whiffs of the their math skills which makes me think that if I don’t give them a bunch of numbers, they will be pretty useless? The current endo is angling for my MM password unfortunately I’ve used my “everything” password so I have to change it before I give it to her and I usually spend the minimum amount of time looking at it that I can.
Have you checked out the Glucosurfer.org? I am totally impressed by the interface there as it’s extremely easy to annotate and the visual depiction of your BG seems like a much more hauntingg reminder about how really permanent this ■■■■ is. Perhaps there’s some sort of limitations in the amount of stuff you can upload there but, at least so far, it goes on and on and on and on with the graph much more effectively than the pump software. My one GP expressed concern about my BG when it drifted up into the 7s a few years ago but the endos mostly pat me on my head and suggest I could turn my pump down so I don’t kill myself. I’ve tried that and hit the point, what I really need is .5U carb ratio increments though. I think that would give me what I’m looking for?
I know I have been researching it. I guess there are two different test because it is so difficult to determine and even then it may not show up. I also heard that gluten primarly used in American flours/wheat products other countries do not use it as much. So if you find yourself in Italy its safer to eat the pasta there…go figure, lol…I have already decided to go gluten free either way, its only eliminating like two more things off my list of foods anyways…lol
I haven’t met a mathy one yet. I used to try and give them numbers and they did nothing to help. I don’t look for help from them anymore. All I expect them to do for me is give me lab slips & prescriptions. I saw 2 different endos last year. The first one in Sep first complemented me on my A1c then turned around and started criticizing everything I did. She did not like I was using Apidra with gastroparesis – maybe I have decent numbers because of the Apidra but she couldn’t see that. The one in Dec was a pervert so even if he had offered help, I wouldn’t have gone back. When he saw I had my pump target at 85, he said he didn’t have anyone with that tight of a target. I doubt he was used to fine tuning things. I do know some people get help from their endos, but I have not met a good yet.
I have an appointment with yet another one next month. I am going because of my thyroid. I know he doesn’t look at numbers because in the packet they sent me, they said they expect for diabetes patients to meet with their CDE for a couple hours their first visit and make sure you bring logs. I called to make sure I did not have to do that. The person that gave me this doctor’s name said there are 2 CDEs there and one is pretty nasty so I am not going to take a chance I get her.
I looked at Glucosurfer and it does look neat but I didn’t try it. Are you able to go up by .5 for your carb ratios? You have to change in full units on the Ping. Being able to use half units would be nice.
I thought for me it was only eliminating bread but it is more than that because there is hidden gluten in everything. I started having some problems again and a friend mentioned hidden gluten in meds. One of the prescriptions I take is generic and the pharmacy switched companies (I knew because they put a note on that it might look different). After my friend told me that, I even called the company and they claimed no gluten. I stopped taking it for 2 weeks and although the problems did not go away 100%, they pretty much went away and then came back again after I started taking it again. Luckily my pharmacy was willing to change it out for another brand. This one apparently doesn’t have any. It is in stuff like toothpaste, mouthwash and all kinds of stuff so you really have to watch.
There was also a post on CWD recently about some chef at a restaurant that claimed to have gluten free meals. The chef had a posting on Facebook that he did not believe people had gluten problems & it was in their heads – he told them the food was gluten free but gave them regular flour and stuff. That post went viral on a lot of the gluten free sites.
It seems common that once you have a problem with one thing, others follow. I started having problems with peanut butter and had to stop using that. This last week, I stopped using dairy. I am starting to wonder what is left for me to eat!
I can see exactly where you’re coming from. I just don’t think that our medical system is designed to give patients individualized attention. The payment system is designed to force practices to make up for losses in volume. Quality of care is not really rewarded. No doctor gets a reward for helping patients achieve good blood sugar control, but they do get rewarded (financially) if they squeeze a lot of patients in over the course of a single day.
I do think, on some level, that we have to be our own docs. Diabetes is a complicated disease; so many factors affect blood sugar levels, whether that be exercise, stress, weather, the position of the moon…you know what I’m talking about. The only thing that has helped me thus far is to track things, critically look at the data, and make adjustments. Thankfully, my doctor is ok with me making adjustments, so long as I document everything. I personally am beginning to feel like I would prefer a doc who will just write prescriptions and let me manage things.
Honestly, the most help I have received thus far is from the book “Think Like a Pancreas.” It was the first place that I read about diabetes and really understood exactly how insulin works in the body, and how all these other factors influence insulin absorption. My endo told me NONE of this! So, at this point, I’m not really relying on what my endos tell me; I’m just reading as much as I can, reading posts on this site (another wealth of information) and making adjustments as necessary. So far, so good!!
I think the one good thing about diabetes is that it’s a really easy disease to monitor. The tools you need to monitor it are pretty easy to come by (assuming you have insurance) and the treatment (insulin) is also pretty easy to get. From there, you just need a bit of time, energy, and smarts. I do wish it was easier to obtain things like insulin pumps and CGMs. They seem like they could be really useful for a lot of people, but you have to jump through a lot of hoops sometimes to get them.
I find this discussion interesting. I am in an endo vacuum. I last saw an endo in Sept of last year. I sought out an endo to get a proper diagnosis and appropriate treatment. I was unsuccessful. My endo had his own agenda, unrelated to my issues, he seemed to just want to make money and avoid problems. It was certainly not about helping me achieve my goals. As many of you know, I went on insulin on my own last december. I told myself after leaving my last endo that I would get a new endo. But now I am not so sure. Given my experience with endos, is it even reasonable to expect that an endo would be helpful to me? If an endo is not helpful, then why bother seeing an endo?
Hi Kelly. Along with having Celiac, I can’t eat soy, corn and some nuts. You can bake with alternative flours, but it’s difficult to eat out. As for dairy, it seems to go along with the Celiac. I find that by taking a good probiotic I can drink a cup of milk with no problem. I had a terrible, horrible case of C-Difficile after taking antibiotics one time, but have never had it again since starting probiotics. Even if it doesn’t allow you to have dairy again, there a lot of benefits to having a healthier gut.
“If an endo is not helpful, then why bother seeing an endo?”
That is the million dollar question! If someone has a good PCP that is willing to least let them try different things, then you probably don’t need an endo. When I wanted to switch to Apidra, my PCP was leery because of the gastroparesis but at least let me try it.
Some insurance companies require you to see an endo to get things like a CGMS and a pump. Even if your insurance doesn’t require it, some PCPs are reluctant to sign paperwork for stuff like that.
The only reason I made another appointment with yet another one, is because of thyroid problems. I am not getting much help from my PCP. If it wasn’t for that, I really would not bother.
I avoid soy because of thyroid problems. I know people use the different flours - I am not much of a baker but I might try some. I did order some gluten free bread the other week - with shipping, it was about $10 a loaf and I got 2. It was horrible!
I do need to have a healthier gut because I have alot of stomach issues.
I have the BEST ENDO we discuss what we think we should do as far as treatment, gives me wide latitude on decisions that we make everyday. We have gone thru a lot of different plans some worked for a while(Byetta then Victoza) but when they became ineffective we moved on to MDI. When it looked like Lantus was not doing the job I suggested Levemir from what what I had read and he jumped on it.
I don’t think I have ever had a bad doctor. If they address me by my first name then I do the same with them. If they address me as Mr. Scott then I refer to them as Dr. -----------------
Kelly, if you have a bread machine, try Pamela’s Bread Mix. It’s really good, the best gluten free bread I’ve ever eaten. If almond flour is OK, there is also Pamela’s Pancake and Baking Mix, which is very versatile. Some carbs in these of course (actually, the bread’s not bad), but by freezing the results, you can have a treat now and again that tastes good. I think Gerri also has recipes using almond flour.
I don’t have a bread machine Trudy but it looks like I should invest in one! I was actually looking at Pamela’s stuff before I decided to order the other bread – now I could kick myself! Onesaint & I were actually talking about almond flour in the Flatliners group yesterday. I haven’t tried any yet so I am not sure if that is OK or not. I knew Gerri had posted different recipes and I saw her pancake one the other day in the pancake thread. I used Google to search for almond flour but limited the search to TuD and came up with a few of her recipes. I will have to order that also.
I’m going on 18 years w/ Type 1. In that time I’ve had awful endos and great endos, and it really does make all the difference. I realize most people don’t have a huge choice in what endo they see, but if you do have a choice, than I highly suggest shopping around for a good one. It might be annoying to try to find one you jive with, but it’s better than just sticking with one who is infuriating and not giving you what you want or need. Also, if you do end up leaving your current endo’s practice for another one, I’d be very frank with them about why your leaving. I recently did the endo switcheroo , and the old (crappy) endo’s practice manager called me to ask me about why I was leaving their practice, and I gave her an earful. I figure, at the least, nothing will change there, and at the best, maybe I’ll be influencing how they treat other diabetics at that office in the future.
Until we can write our on scrips, endo’s are a necessary evil. I’ve always thought that it’s ridiculous that we have to have a prescription and pay for what everybody else’s body naturally makes. Until things work differently, I think it’s perfectly OK to shop around for a better endo, if your insurance company will let you.
I like my endo. She’s young and flexible. When I explained why I didn’t want statins (PVCs anyone) she was sympathetic to that. Compared to my “I need to give you pills all the time” primary care, she’s a dream.
DogLady - You’re right. Insulin pumps and CGMs should be available to more diabetics. I have found both of these technologies essential to my treatment. I credit the CGM with dropping my A1c by 1%.
I figure, at the least, nothing will change there, and at the best, maybe I’ll be influencing how they treat other diabetics at that office in the future.