That’s actually not a lot of insulin. You suggest that she is Type 1.5, but this is basically just slow onset T1 and given her numbers, sounds more like full blown T1D. How did they come up with Type 1.5? More than half of all new T1D diagnoses are in people over the age of 20, but sadly the misapprehension that it is confined to children and young people persists even with some in the medical profession. The “rule of thumb” for Total Daily Dose of insulin is 0.5 to 1.0 units for every Kilogram of body weight. This is a very rough guide, but it sounds like she is taking a lot less.
There are some GPs out there that understand T1. IMO, very many are hopeless and not to be trusted. Seeing an Endo is your No.1 priority. Regard it as URGENT (Do not pass GO do not collect $200)
“since this is just the beginning we are still seeing a general practitioner”
The GP, is definitely outside of his/her area of expertise and definitely into the area of poor ethics. I would ask for a referral to a good endo immediately.
As long as she isn’t taking enough insulin, she will remain high. After a few weeks of gradually increasing insulin, the Dr. should be able to make an educated guess as to how much her Total Daily Dose should be.
I would respectfully disagree with this comment. The primary difference between management via insulin pump vs. MDI is the increased ability to fine-tune insulin delivery. In fact, I’ve seen an endo put a two-year-old directly on insulin pump. It was the only way to deliver the doses in fine enough units for his little body.
As for learning how to deliver via MDI, I did MDI for almost 20 years and Insulin Pump for the past 12 years. On a vacation last year, my pump failed and I didn’t have a back-up. I had to revert back to using long-acting (NPH) and was challenged to find the correct dosing,
Alex, glad you’ve come here looking for help! There is a ton of knowledge here, and you’re getting a lot of good, sound advice. It sounds like your wife is in a very bad place, and I want to emphasize that diet isn’t a solution to Type 1 but can help manage BG in the short and long terms.
Just a note on what is a “healthy diet” for diabetics. “Healthy American Eating” is usually not healthy for most of us diabetics, in the long or short run. I’ll go on at length below, but for now, please consider having your wife dramatically cut carbohydrate intake until you can see a doctor. How dramatically? Like almost all of it not from green veggies (no breads, no sugar, no potatoes, no turnips, no carrots, no rice, no corn, no starch). If she’s worried about micronutrients, get some supplements (multivitamin). Ok, now…
No matter how you cut the pie, so to speak, the average American has no idea what a healthy diet for diabetics actually is. It’s not “sugary indulgences” in small quantities that do damage (although they certainly can for us Type 1s). It’s the steady barrage of “healthy carbs” we’ve been trained to eat. Is whole wheat bread bad for a human being? Definitely not, unless you happen to have one of a few disorders which makes metabolizing wheat proteins or starches complicated.
We diabetics have the latter type of issue: we do not metabolize digestible carbohydrate efficiently due to beta cell failure in Type 1s (and some Type 2s) and insulin resistance in Type 2s (and many Type 1s). Most diabetics have to become something between a chemist and a dietitian to figure out how to help manage their BG with diet, medication, and exercise. While others are absolutely right about your wife’s insulin regimen clearly being insufficient, slightly reducing carbs and eating a bit more protein is probably not as useful as you might be thinking it is.
Just for reference, I was diagnosed last May with LADA (actually, originally Type 2 and then was re-diagnosed after further labwork). It took a few months to get my BG under control, but the single most effective non-medical intervention I made (after googling religiously) was cutting my carbohydrate intake dramatically. I’m not the only person to have come to this conclusion. Bernstein, Type 1 Grit (on Facebook), and many, many Type 1s here follow low or very-low carbohydrate diets. Simply enough, if you don’t produce enough insulin, reducing the amount of carbohydrate (which is what your body needs insulin for) can help to an extent.
IT isn’t a cure for Type 1. Your wife will absolutely still need basal and bolus insulin, in some quantity. But restricting carbohydrate (or balancing it with exercise and insulin) is necessary to achieve “good” control of blood sugar. Start reading labels and counting all the carbohydrate in meals. It’s a pain, but it is necessary to calculate bolus doses. It also makes one aware how much digestible carbohydrate is in things that don’t qualify as “sugary indulgences.”
I’ve learned to cut potatoes, pasta, rice, bread, noodles of any type, sweet potatoes, beans, tapioca, and most sources of sugars from my diets. What’s left? Green veggies, certain kinds of high-fiber foods, meat, eggs, cheese, butter, seeds, nuts, and oils. If it sounds horrible, it is horrible a bit. But it is worth it to reduce cardiovascular risk, onset of complications, and live a long healthy life with my family (despite having diabetes).
Sorry if that is overwhelming (sometimes it is), but you’re describing an emergency situation for your wife. BG over 300, constant fatigue, those are really dangerous conditions to be in. For reference, I eat about 80-100g of carbohydrate per day, 30-40g of which is dietary fiber. That puts my average digestible carb consumption at ~50 +/- 10g per day. That is borderline too much for my body to handle safely. Some people can deal with more, some people eat far less (“keto” diets often have less than 25g total carbs per day). It all works with a little effort and trial and error. Contrary to popular belief and what it feels like initially, you can’t die from lack of carbs. You can die from high blood sugar, lack of protein, and lack of fats in your diet (see diabetes, wasting diseases, and “rabbit starvation” for more info).
Anyways, I just thought I’d add a small note that you and your wife might need to reassess what is “healthy” when it comes to eating. Most of us have, in one way or another.
The book you and your wife should read FIRST is “Think Like a Pancreas” by Gary Scheiner. It gives you good explanations of what’s going on and principles of treatment.
Of special note, it shows you how to figure out your basal insulin (and your bolus insulin too) and how to adjust it. Gary is a Type 1 himself, so he knows what it’s like.
Type 1 is the strangest chronic condition. We are responsible for giving ourselves our treatment every day and hour-- and adjusting it, too. The more info you have about how to do it, the better you’ll do.
Timbeak48’s recommendation on Gary Scheiner’s “Think Like a Pancreas” is a great one. Jenny Ruhl’s Blood Sugar 101 is another good basic book. Gary also has a great book on carb counting.
Dr Steve Edelman has a series of youtubes called the Edelman Report. Dr Edelman is a T1 and is the founder of TCOYD which hold educational events around the country which are worth attending.
I don’t think you mentioned which “insulins” she is using. Most “insulins” currently used are analogs. Which means the insulin molecule has been modified and will react differently with different people. Some people are finding great basal results with Tresiba but not all. I believe Dr. Edelman is now using Tresiba himself. She may need to try and find the best for her.
For meal time the rapid analogs as Gary Schiener says are not really rapid. They do not mimic the profile of a healthy pancreas and they do not provide the first phase insulin response needed to signal the liver to shut off glucose production. This is a big problem trying to control meal time spikes. This is where the low carb approach really helps. The new afrezza which is a monomer human insulin provides this near natural profile and if properly dosed will completely blunt the spike. Now, if she goes with afrezza the low carb/high fat diet approach is not the best but rather moderate carbs and go lower fat.
Also nothing is better than afrezza for correcting highs. Even if she is using other “insulins” its a great tool for corrections.
If she does not have a CGM I would highly recommend she gets one to learn her profile. To properly titrate will take a lot of finger pokes without one. My personal favorite because of cost is the Abbot Libre which is not officially approved in the U.S. yet but should be any day. Its EU approved. The sensors last 2 weeks, cost about $70 and are available on a number of internet sites including ebay. If you have an android there are a number of apps available to read the sensor and there is an official Abbott app available for download www.librelink.com if your country code is set to UK.
Sure, the entire idea behind a low carb/high fat diet is to not spike your sugar level. However, the fat will slow down how fast the carbs get turned into blood glucose. Pizza is a good example, high fat, high carbs but BG may not spike for hours. Take the pizza carbs without the fat and it would hit the blood in minutes. afrezza is so fast that in 2 hours its out off the blood. This is great for hypos but not great to control delayed sugar spikes.
This is when afrezza needs the follow-up dosing to replicate second phase insulin release for the delayed spikes. Not a big deal if you have a CGM to remind you, just take another puff. To keep a really tight range Gary Scheiner mentioned a second puff is needed 40% of the time. If you cut down the fats and dose higher on the first puff the 40% is high. Some experienced afrezza users seldom do follow-up doses and keep very tight ranges. They provide a big first bolus and thats it. As Gary says, think like a pancreas.
As I mentioned every T1 should have this in their tool box for corrections. It is not only fast its very predictable for two reasons. Gary mentions hydration level. The second is because its monomer human insulin which the body is naturally tuned to use and not an analog.
Ok, I gotcha. Sounds to me that low-carb, high fat might be alright, if you time the dosage right. It’s high-carb high-fat (i.e., the “typical” American diet) that sounds like it would be fiddly to deal with.
What I’m hoping to do next week, since I’m very early in the LADA progression and not yet on insulin, is to start a low-dose basal and have afrezza for corrections and carby meals. I eat a low-moderate-carb diet myself, with a ton of exercise, high protein intake, and probably a “moderate” amount of fat given my caloric needs.
I’m pretty sure pizza is out no matter how I cut the pie, so to speak… I’ve settled on fathead pizza as a more-than-sufficient substitute. The digestible carb load is so low that it barely spikes my BG now.
Hopefully you know your 24 hr. BG profile. If you don’t I would map this out for at least 2 weeks keeping a log of what you are eating. Based on the profile you and your doctor can start making some informed decisions. Prior to CGMs treating diabetes was a mystical art. Over the last several years CGMs have turned treating diabetes into knowing your numbers. Now with the Libre its easier than ever, you don’t need a prescription and for the cost of a sensor or two is pretty inexpensive. If you already have a Dexcom or other CGM thats super. If not Libre sensors are on Amazon and ebay. Several apps are available to read the sensors. They are NFC not bluetooth.
With LADA you have probably lost a true first phase insulin release but until you know your profile who knows and you have no idea how you are responding to different foods. Additionally, a basal is not going to directly address the meal time spikes. You could be spiking 200+ after meals. The key to reducing the stress on the pancreas is getting you back to a fasting BG level asap. A non-diabetic will generally be 80-90 within 3 hours.
There is some evidence the autoimmune attack characteristic of LADA may be stimulated by the production of insulin by the beta cells. The harder the beta cells are working to deal with the meal time spike the worse the attack becomes.
I’ve settled on fathead pizza as a more-than-sufficient substitute. The digestible carb load is so low that it barely spikes my BG now.