Numbers Near 300 Most of the Time

Type 1 and LADA
41

Well, I have to comment, what’s “too much insulin”, if that’s what it takes to keep your numbers in range?

Honestly… and I don’t mind saying this under my login - some doctors and DEs can be really stupid. You’re not taking too much insulin if you’re numbers are hanging around the 300s… you’re just not taking the right amount for YOU. There’s a difference.

Just wondering whether you are over-correcting when you have hypos? I was told the normal thing - get 15g of glucose into me and follow with some long-acting carb. It just didn’t work for me - it was a huge over-correction, FOR ME. If I have insulin still active in my body, I will have some longer-acting carb. If not, I may not or I may have a very small amount.

When you correct your hypos, are you swinging way off into high numbers again? Maybe your Diabetes Educator or doctor could guide you in this (then again, maybe not! LOL)

42

I went “half” Bernstein - between 60-100g per day and yeah it does work! And it works well for me. Some days I go less and some a bit more but the average is what I stated. I’m actually doing a bit less at the moment, but I choose not to do the 30g a day, which I’ve done before and didn’t like. But the principles work for me.

I must say however, that I almost never eat pizza or pasta, only occasional fruit (maybe 1or two per week in summer), and never oatmeal or granola unless it also with lots of fibre. These are foods that don’t like me. Food does different things to different people.

43

I don’t have diabetes, but I sympathize with you and want to be “part of the cure”. Keep your chin up and hang in there. If you come to NYC, you might check the Gerald G. Friedman Diabetes Institute at Beth Israel Medical Center. Also, Tufts University Gerald G. and Dorothy R. Friendman Diabetes Institute may have someone who can help you. http://nutrition.tufts.edu/1177953852933/Nutrition-Page-nl2w_1178308939279.html

44

Thank you so much April. You are very kind to take the time to offer your support.

45

I do agree with another poster that you may be insulin resistant. Which is why I am telling you what we were advised to do… to give her the amount of insulin she needs. Teens ARE insulin resistant, so I figured you could use a teen as a model and see if it works. You can’t stay in the 300s all day that’s for sure. In addition, you shoudl get your thyroid checked; hypothyroid causes very high doseages of insulin to be used initially; followed at the very end by steeply dropping insulin needs. A Synthroid pill once a day will take care of that. If you do have “double diabetes” or are very insulin resistant, I’m puzzled as to why the endo did not prescribe other drugs, such as Symlin? I was thinking your ICR will go up, once you test your basals and give yourself what you need on an hour by hour basis. Look up how to test basals in depth in “Using Insulin.” If it is not in “Using Insulin” it will be in “Pumping Insulin” by John Walsh. Our endo had us do basal tests when niece was started on Lantus and Novolog,: You do the basals first. Get them exact. Then, and only then, do you change the ICRs. If the basals go up; the ICRs often also go up (needing more basal/less bolus). You must get medical advice though, if you are insulin resistant or have double diabetes. You may need other drugs in addition to insulin. You will be no carbing it during the basal test. Once you have your basals figured out, if I were you I would eat a low carb diet for a while and see if that helps with the insulin resistance. But, bottom line re insulin: you need what you need.

46

Re Type 2s on insulin: Sis is an RN who has 30 diabetic patients (not a CDE), they are in a resident setting. She was surprised at the amount of Lantus some of these patients need. One is on 70 units of Lantus (that’s basal only) each day. It is possible to need a lot of insulin and the Lantus for this patient is prescribed by an endo. What other people need is of no significance; your body needs what it needs and basal tests for all time periods of the day, repeated if necessary, will tell you what that is on an hour by hour basis. Now if an endo wants to give another drug so you can cut the amount of insulin down, that might be a great idea. But you can’t walk around with BGs in the 300s. So if it were me, I would give the insulin needed to cover my BGs.

47

I have been asking for Symlin for the last 3 months since reading about it, but I was told by 2 different endos that I shouldn’t take it until I get more stable as it causes lows.

Having gotten so many new ideas from members of this forum, I will begin applying them as I proceed on my path. I 'll be seeing my endo in about 3 weeks and I will bring to her attention some of the things learned here asking for her help in trying new treatments.

48

I am very careful not to over correct a hypo. I take 3 glucose tablets and find that I’m good to go. In the beginning I felt like I could eat everyting in my refrigerator, but acting on that impulse taught me a good lesson early on and I don’t take that route anymore no matter how hungry I feel.

50

Interestingly enough, today is day 4 of the change I made to increase my split Lantus doses. I made this change before I began this discussion. I am having a much better day today - numbers down quite a bit and feeling more alive. I’m glad I trusted my own insticts to do it. My prayer is that this is where things will begin to turn around. We’ll see - a day at a time. Thanks so much for your input.

51

BB, maybe I’m a bit of a numpty, but I’ve found that exercise is the key pillar of my disease management.

Relying on meds alone feels like walking a tightrope, but when I add exercise, especially consistent exercise, everything gets better - mood, cardiovascular health, T1D control. It impacts my sensitivity, my levels are more level and the amount of insulin needed drops. Instead of a tightrope, I’m walking a plank.

I would look into a CGM. I came to rely on them when I drove for UPS. I couldn’t have done that job without my Dexcom - I tried it and passed out after three days when Caremark screwed up my order. Yep, at home, walking the trashcans out to the street and face planted. I called in, told them I had the flu and spent the next four days war dialing Caremark.

It rough out here, but as long as you’re experimenting with meds, toss in the exercise and see if that helps sensitivity? I’m pretty sure whoever wrote those cautions against exercise just hated to get sweaty.

53

Marie,

Thanks for your response.

I’ve lost all faith in the US medical system. It’s not here for health, but wealth.

If I can hit my target numbers using 25.00 per vial 30 year old tech insulin, why would I increase my yearly spend on “Wealthcare” by 1500%? or 15000%? Why would I do that???

I don’t need validation or pats on the back, I need to survive until something other than complications takes me out.

I can guarantee that if you see an Endo for your care, you will be pushed onto a therapy that will exponentially increase your spend. If you’re of the cadre who bleats the refrain, “Insurance will cover it, all you need to spend is your copay”. Then you are part of the reason that Insurance is about to dump all of us out on our collective butts.

I have a friend, covered by State of Georgia employee insurance who got hit with this.

Her therapy - which was cutting edge - was no longer covered. Her QUARTERLY bill is now 10k.

She came to me to try to figure out how to manage on my system. My spend without insurance is 1k.

So, yeah, no Endo for me. All they do is push Tech and high priced Insulin.

55

We all have our initial locus points through which we view the world. It’s the lense that shapes how we see everything. Everyone has one, each one is unique.

It seems as though ours are polar opposites.

Mine is shaped by poor medical care over a half century. Either ■■■■■■ doctors, ■■■■■■ insurance, ■■■■■■ access, ■■■■■■ prices for devices, it’s added up to a profound distrust of the medical system and all of the players in it. I can’t NOT see the profiteering on every level.

I’m an Iatrophobe because of my experience with the medical system. I have full blown white coat syndrome. If you test my blood pressure in an office, it will be high, if you test it again, it will be higher. This continues until after I leave the building. I’ve gotten as high as 200/100 in one instance. It’s fight or flight when you can do neither, so your body readies you for both. At home, I’m generally well within normal limits, sometimes low.

When your earliest memories are of medical interventions and all of them were painful and this pattern continues throughout life, it shapes the lense through which you see the world. When you’re eight and the guy who has hurt you regularly since you were able to remember tells you that what you have is going to kill you before you get to 30 and when death finds you, you will beg for relief, you both believe him and hate him for it. Mostly hate him.

I guess you will interject that not all doctors are the same, that some Endos are wonderful people who only want to help. I would counter that you’re in the same position as someone arguing that most priests don’t rape children to a kid who was repeatedly raped while bent over an altar. We’re not going to believe you and then we’re going to view you as someone who enables priests to rape more kids. It’s just the way this lense works.

I’m not saying that you’re a bad person, just that I view you as one, which doesn’t make it true. I’m damaged, so my viewpoint doesn’t count for much, but I think we would all be much happier if you and I don’t interact much anymore.

56

You’re in a lucky place; you’ve dodged a bullet. It may not seem like that being an IDD but you have. Your C-peptide of “0.3”, I assume 0.3ng/mL, is one third of the accepted range for a fasting C-peptide but that is still a lot of insulin. The accepted high level for a T1 is 0.15ng/mL and at that level the insulin we produce makes things a whole lot easier.

You also have a near keto diet. Most people can’t hack that; I can, but show me food prepared by someone else and I suddenly can’t (sucky cooking helps.)

You can DIY. It used to be cheap to get BG test strips on Amazon but since Amazon got into the US healthcare business no longer. Walmart has taken Amazon’s place; the Relion test strips work and aren’t that expensive. A few months ago I heard a customer giving a hard time to the guy on point about how he couldn’t afford that much for the test strips and the guy said that the ones on his immediate left were cheaper. The dude took no notice.

Belatedly CGM manufacturers are looking at their bleeding feet and wondering why they did that. The Abbott Lingo and the Dexcom Stellar are available for around $50 a month; a lot less than an insurance policy for an otherwise healthy person who doesn’t file a US tax return and a lot more functional for an IDD.

The scariest thing that has ever happened in my diabetes life was when I ran out of test strips, I used a lot. Scariest thing that ever happened in my life too; the other things were just interesting until the impact then just painful.

You are well set. Just use the tools that are available and they will work. You responded to a “sticky high” post. It’s a big deal; I rage bolus. I would never tell anyone else to do that, it’s just what I do. I’m kinda DIY too; I will certainly die someday and it will almost certainly be my fault.

57

It’s always toughest while your body is still making some insulin. This causes reactive hypoglycemia and this rollercoaster effect. I went through this too but since I was young, my insulin production dropped to zero within a few months.

After that my sugars were much easier to dose and keep track of.

One of the things I did many years ago was food testing.

Wake up with steady sugar. Good time to test foods. So eat what ever you eat for breakfast, but a small prortion.

So if you eat toast, have a half a piece and figure out how much you jump from it.

Same with any food, you find out what it does and then scale it up.

Then you know what your insulin sensetivity is in regard to food.

You can do something similar with basal testing. You just need to fast and take readings to figure out how much basal insulin you really need.

Most of all exercise is very important. I know some say don’t exercise if your sugar is over 200, but I think if you have long acting insulin on board you can and should.

Your sugar will come down faster even from a simple walk around the block.

I was flying today so sedentary almost all day and my insulin requirements Trippled

I think metformin is a good thing to take because it will reduce your insulin needs if you are also insulin resistant however it takes weeks of consistently to get the benefit
I tried it on a whim to see if I could reduce my total insulin, and it did that a little but not enough, and if I didn’t take it one day, my sugars skyrocketed, so for me it wasn’t working
I’m sorry to say this disease is horrible, especially when it is new and you haven’t learned your body.

It will get better with practice and patience

58

You BB are one good reason why the TuDiabetes forum needs to remain in place (threatening with Beyond Type 1 website replacement)…….I joined over a year ago but for some reason could not post, comment until 5 months ago. I have gotten more help from the forum than 4 years of medical professionals that sound like your bad experiences with them. You, to your credit have tried to self-educate on Type 1 more than I have, hoping the doctors would guide me. On the forum I have learned of many T1D who have little to no help from their endos.

Your cruise story is shocking in that you got care but contradictory care and direction. I too was misdiganosed Type 2 for 2 years taking 2000mg Medtformin and others not needed when I found out I was T1D. Many of the meds gave me a yeast infection (Farxiga, Jardiance,) and were replaced by insulin. I also had many lows (very uncomfortable as you know)….have a CGM Libre 3 and charted 47 lows in a 90 DAY PERIOD. Have never gone below 55 but darn uncomfortable!!! One of my 4 endos used the doc slogan..”high alive, low dead” to remember the different dangers of high and low glucose. I was switched from Lantus 55 mg to Tresiba as a long-acting insulin…….which has reduced my hypoglycemias considerably but now I am high often…..especially at night before bed, after taking insulin……can be 350 or more. I then take the fast-acting insulin which puts me at risk of low BG. So far taking up to 10 units (correction dose) at 11 pm because I hate to go to sleep with a 350 BG………..Have still not gone too low, in fact can be over 240 upon awakening and when I look at my CGM graph was high for the first three hours of sleep!! Still have not found and answers or solutions for these highs……Have a Twiist pump maybe ordered and don’t know how it will affect me or how I will tolerate it.

I was guided by a dietician almost 3 years ago to get the Libre 3 plus CGM system and would go crazy testing, and in fact would not test as often as I look at my BG reading. I am grateful for that guidance as I get sore fingers even when i have to test with a needle in-between sensors. I would have no idea except when really low with the horrible symptoms. You are trying real hard to know yourself and getting the run-around from the endos like I did. Some of the forum people have had good endo experiences.
I was referred to TCOYD podcast and website……..watched a link to a T1D conference held in San Diego by these two endos, who are Type 1 D themselves and it was very informative and I saved it and took photos of the topic displays. Dr. Steve Edelman and Dr. Jeremy Pettus run the TCOYD podcast and website……lots of information there……Wish I could have some semblance of those endos in my area. I wouldn’t be complaining as much then. At least they share their knowledge and a forum member linked me to them. Good luck you are motivated and way farther along than I am at 3 1/2 years.