I can’t imagine the frustration and indignation you feel from the lack of knowledge and indifference from health care providers. I live in a rural area too, but I work in a major city (80 mile one-way drive). I am very fortunate to have a professional relationship with the endo team where I work. My endo was not accepting new patients, but I guess she found room. When my PCP told me I had T2 and to come back in a year, I had to request a referral to endo. The endo fellow walked in the room, took one look at me and said “we’ll need to figure out what type of diabetes this is”. She got the ball rolling and with a GAD of >500, they advised immediate insulin therapy based on research showing it could slow the demise of the pancreas.
Is there anyway you can see an endo in a nearby city? Before getting in to see endo, I had been trying to manage with diet but my sugars were 300-400. The PCP told me to eat more whole grains and exercise more. I was already a health nut so refined foods were not part of my diet. Breakfast of rough cut oatmeal put me at 300. I had to push the PCP to rx a glucose meter and strips because she said “we don’t look at blood sugars. We look at A1c”. My answer was "how can I manage my A1c if I don’t know what my blood sugar is? She very sweetly prescribed a meter and strips that my insurance didn’t cover so I spent upwards of $250 on this gear. Exercise was also routine lifestyle.
Prior to D dx I was very ill with lyme’s disease that went undiagnosed for way too long. I kept telling the doctors that I live in the woods and that dogs that visited my property came down with lymes and another tick-borne illness. No one listened. After the spinal tap for meningitis, I called the MD and insisted they run that blood for Lymes. They ran the test. No one bothered to look at the result. Two weeks later, when I was in for another visit for exacerbated symptoms, that positive test result slapped me and the care provider in the face. By that time, Lymes had done it’s magic on my pancreas. From what I understand, I carried the propensity for T1D. An illness can push you over the edge. My point in this information is that I have no trust in physicians or our present health care industry. It is sad to call “health care” an “industry”.
LADA is T1D. Why does an endocrinologist not know that!? You and I know that. I don’t know about you, but my salary is not equal an edocrinologist salary.
I have to tell you, most GPs are not competent enough with diabetes to diagnose T1 and initiate insulin therapy. This is particularly true if they were educated more than two decades ago and have not done any continuing education on diabetes. I would note a couple of things. Young doctors right out of school are probably the best ones to understand T1 diagnosis and insulin treatment, so choose a young doctor. Second, understand that doctors avoid risks that may make them liable. The decision to initiate insulin is one such situation. In the end I decided that starting insulin was “MY DECISION.” Having a doctor unwilling to make the decision was an obstacle, but they don’t have the final say. So, here it is, seven years after I started insulin and I am doing great. You can read about how I started insulin by buying NPH and R off-the-shelf at Walmart and then when I returned to the GP already using insulin they had absolutely no problem prescribing it for me.
Say Lauri, that backyard rink sounds like a fantastic way to get the youngster skating! Good luck, can’t wait to hear more about it. I’ll be hoping 2018 brings you a nice cold winter and ice like glass.
Once you retire (congrats!) and quit that long commute drive I expect you’ll spend less time behind the wheel. I’m curious whether you see BG rises when driving. I do. If I am flat or rising when I get behind the wheel I usually need a pre emptive bolus to prevent a spike within about 60-90 minutes or else I have to pull over and take a correction bolus plus a 10 min stroll. Curious if you use Afrezza to knock down those spikes while driving and does Afrezza work just as well sitting or is a short walk or jog needed to kick it off?
Regarding people’s struggles to get decent service from PCP or endo, all I can say is those appointments are so short that it pays to be prepared before you go in. I might be naive but I think most doctors will respond well if one goes in with notes about different lows/highs, CGM plots printed off, and ideas to bounce off the professional. If they won’t respond to that kind of discussion it’s best to move on and find one who will.
I have to tailor my insulin dose exactly to my meals, and a difference of a single unit can determine whether I have a hypoglycemic seizure or whether my control is perfect. So I wonder how people using Afreeza can deal with the clumsiness of having their dosage restricted to such huge increments?
Perhaps you’re trying to function within a much smaller range than others. I’m quite happy to maintain an average BG of 110-120 at this point. However, it’s also been pointed out that Afrezza operates differently with your liver, allowing more liver control of low BG’s as would occur in a non-D.
You don’t understand, that is the beauty of Afrezza, there is much more leeway with dosing, it doesn’t need to be precise. To understand how Afrezza works you should watch this video below by Matt Bendall its extremely helpful in understanding why it’s so different from injectable insulin. I would also highly recommend that you check out the Afrezza Group on Facebook as it has many Users discussing challenges converting to it, and how they’ve done it successfully.
When I’m biking or doing other exercise and need carbs to maintain blood sugar, I don’t take insulin to cover the carbs. Usually I try to have a blood sugar around 160 when I start exercise so I have room for the predictive fall. Once the CGM shows down arrows around 110-100 I consume part of a Cliff bar. I like the fast action of Afrezza because I don’t have to worry about insulin-on-board that will lower sugar even faster. I can eat and Afrezza will be out of my system in under 90 minutes. Then I can exercise and not worry about IOB.
Too late for “ice like glass”. The weather here in Western Wisconsin has been volatile and the ice is cruddy. I’ll have to flood, but that’s ok.
The long commute is tough on blood sugar. Fortunately, I work from home 3 out of 5 days each week. The two days I drive are killer. And thanks to technology, most of my work consists of sitting in front of a computer… yaaay. I haven’t used Afrezza long enough to understand how it will react to sedentary versus strenuous activity. I have not noticed a difference in sedentary versus moderate activity. I have inhaled while driving and it works similar to when I am up and moving about.
Insurance has degraded medical care so terribly. Physicians are allowed 15 minutes to see a patient. That 15 minutes includes dictating notes and whatever else is required. So no wonder they can’t give proper patient care. NPR had a program about physicians who accepted only cash payments. An office visit was $20 and home visit $40. This was in NW Minnesota. Something to look in to.
The PCP who messed up my care when I had Lymes was seriously not a good physician. But I had a fabulous PCP for 6 months, and then she left my clinic. I haven 't seen a PCP since. My endo is amazing. They are allowed 30 minutes for patient follow-up visits and 60 minutes for a new patient. She always takes plenty of time with me and I’ve never felt rushed. They download from my pump/meter/CGM so I don’t need to be prepared with those things. It was irritating to be put off when I wanted to try Afrezza. I may have mentioned that I am the only patient in this endo group’s care who is using Afrezza. I can’t understand why any endocrinologist would not be up on the latest treatment available for PWD.
I know that the phasing of Afreeza’s action is different from that in normal insulin, but I still don’t like the inexactitude of being able to dose only in increments of four units, rather than in continuous gradations, as in injected insulin.
It is interesting to see all the folks (me included) saying “no thanks” to inhaled insulin for any number of reasons.
I remember a lot of haters and doubters on the subject of home bg testing back in the early 1980’s too. Including me! I was just a kid and somehow I had grown used to just doing urine tests and hated hated the thought of poking myself to test bg. I faked so many bg test sheets back then.
Tim are you trying to draw a comparison between attitudes toward blood glucose testing and using an inhaled insulin? Personally I don’t see the connection
That’s how I read it too. Reminded of when recombinant DNA insulin came out, how there was this scare-mongering about how GMO insulin would give us cancer or do other weird things to us. “Safer to stay with pork insulin!” people warned.
I don’t know how long you’ve been around, but I started off in the urine-test only era and that data was nearly useless compared to bg testing. Yet it was far from instant adoption. By the late 80’s the snowball was really rolling in home of home bg testing at least for T1’s, it probably wasn’t until at least a decade later that the snowball was also rolling for T2’s doing the same.
I think I see some similar things going on with inhaled insulin. Those who use it know how fast it’s in and out, but those of us who have never used it just don’t appreciate what they’re trying to tell us.
Four units of Afrezza does not equal four units of rapid acting analog (RAA) insulin. Afrezza’a onset, peak, and duration are all different.
I and many other Afrezza users find that the blood glucose lowering effect of Afrezza is unit-for-unit less than the RAA insulin. This point has been often made in online discussion fora since Afrezza’s early 2015 introduction in the US.
I think it’s unfortunate that Afrezza is labelled in 4, 8, and 12 unit cartridges. Afrezza doses are not as precise as RAA insulin. The only way to appreciate how it works is to try it. It’s not for everyone but its incremental dose choices is not a good reason to write it off.
It makes no sense to compare concerns about Afrezza with previous fears about improvements in diabetes therapy which are now known to be irrational, such as the reluctance of some patients to switch to blood tests from urine tests, since Afrezza is now known to carry serious risks. First, it clearly diminishes lung capacity, which could have severe effects on patients with established cases of asthma or a predisposition to it. Second and more importantly, insulin is a mild carcinogen, and since lung cells are much more susceptible to developing cancer than other cells, it is playing with fire to be pumping a carcinogen into the most cancer-susceptible part of the body you can find.
And what advantages does it have for a patient who has already adjusted to injecting insulin, which is to say everyone who has required insulin for more than a week? Well, it is available only in clumsy, non-specific, gross gradations of dose, and it would be dangerous to take in the large proportion of diabetics who have gastroparesis, since in the case of those patients it would act too fast for their delayed stomach emptying.
Edit (On the off chance that the following post was in reply to this - again - feel free to provide proof for whatever nonsense was being stated previously.)
