Numbers Near 300 Most of the Time

Type 1 and LADA
1

I am a new member. 6 months ago at the age of 62, I was diagnosed with

type1 diabetes while touring the middle East on a cruise ship. I was

perfectly fine when I boarded the ship but 5 days later I had diabetes.

I spent a good part of the 18-day cruise in the ship’s infirmary

receiving insulin drips and when the numbers just wouldn’t stay under

control despite taking the recommended small dose of 70/30 Novolin, I

was taken off the ship and brought to a hospital in Suez City, Egypt.

The “hospital” was a tiny facility located in a store front - dark and

dingy with crumbling plaster falling off the walls in the exam rooms.

As scary as it was, the doctors were excellent and took very good care

of me. After 4 hours, I was sent back to the ship with a combination of

Metformin and Amyril. These drugs were to be added to the insulin I had been
prescribed by the ship’s doctor.



Although our trip was to continue for an additional 10 days during which

we were to be traveling around Europe, when we disembarked the ship, I

was just too ill, with numbers reaching 400 and above, to continue our

travels. We boarded a plane and came home to Florida. The next day my

blood sugar level was over 500 and I was admitted to our local hospital

where I stayed for 4 days. Despite levels still at around 375 and an

HbA1C of 9.5, I was released. So began my roller coaster of highs, lows

and treatment with now 4 different Endocrinologists.



As soon as I got home from the hospital, I started my in-depth study of

my disease, combing the internet and forums for information, voraciously

reading books such as “Using Insulin” and “Think Like a Pancreas” as

well as those by Dr. Bernstein. I began for me what is to be considered a

low carb diet of under 75 carbs a day, keeping charts of everything I

put in my mouth using “MyFoodDiary.com” and charting my blood glucose

levels on “SugarStats.com”. I was spending 12-16 hours a day for the

first 3 months carefully charting, learning - and practicing everything I

was learning. I tested 10-15 times a day during those first months, in

order to learn what my body did with food vs. insulin and trying to get

my Insulin to carb ratio tightly established. I was assured by everyone, if I

just followed all the expert advice I was given, that in a few weeks I

would surely get my disease under control.



When the first Endo I saw gave me advice that went against everything I

was reading and learning, I switched to another. When the insulin

regimen which he put me on did nothing to provide any decent

control of my seesawing numbers, I switched again. The third Endo

lowered the total insulin I was taking and advised me that I was not

eating enough carbs. She did this because I was experiencing too many

lows. However, the new regimen raised my numbers to over 200 most of the

time. She experimented with different basal rates of Lantus and

sliding scale doses of Humalog for meals. After a couple of weeks, I took
things into my own hands and experimented with different combinations,
giving each new tweak a week or 10 days before trying a different combination.
I was always either too high or too, low - fluctuating wildly, and mostly felt like
someone had put a straw into me and sucked out all my energy.



I have always been a very upbeat person - centered spiritually and

looking at the bright side of situations. People tell me they

admire me for these qualities. I stayed very optimistic until very

recently - which is the 6 month anniversary of my diagnosis. I am now

beginning to lose hope especially since 3 weeks ago, I saw one of the

top doctors at the University of Miami’s Diabetes Research Institute and

he has not been able to help me obtain better control. Since he saw

that I was experiencing lows every day and that the HbA1C he took in his

office showed 5.75, he cut back my insulin intake again telling me that I

was paying too high a price for getting my A1C to such a low level. So now the

highs are worse with my numbers staying in the 300 range most of the

time. First the huge swings and now these consistently high numbers have

really taken their toll on me. I have hardly left my house in the last 3

weeks.


Here is where I stand today: Lantus - 18U before breakfast and 12U
12 hours later/ Humalog ratio of 1U to 5carbs with no correction doses
between meals. Total insulin intake approx. 52U. My weight is 167 lbs.
and I am 5’6" tall. Total daily carbs under 75, little to no exercise
due to constant high sugar levels.

I may be 63 but I look like 43 and I don’t want to feel that I am a

hopeless case, in fact I was hoping to get into one of the research

studies at Miami U, but 45 years old is the cut off age.


Any suggestions, advice, hope or just commiseration will be

appreciated. Thanks for providing a place for me to be able to tell my

story.














































2

I’m so sorry to hear that you are having such a hard time. I was diagnosed at 58, so close in age, only I was initially misdiagnosed as Type 2. (I’m LADA so was able to do fine on oral meds for 15 months). It sounds like you have been shipped from pillar to post looking for help, both in your original (mis)adventure onboard, in Egypt and then at home. I wince when I read some of your endo experiences: “eat more carbs” “sliding scale for meals”. Yikes! But we have all had similar experiences, you have just had more than your share!

I don’t have any magic answers for you, but you have definitely come to the right place! You will get lots of good advice, questions to clarify and support here from many diabetics who have years of experience. I just have some general comments. I suggest you find one Endo you feel good with, who seems to make sense in keeping with what you have learned, and who feels like he gets your individual needs, then stick with him. But beyond that, you are right, you will need to do your own tweaking. Don’t let anyone convince you to do sliding scales, take insulin mixes, eat high carb, or any other outdated regimen. Find your Insulin:Carb ratio by experimenting and seeing how the same food and dose affects your blood sugar two hours later. Many of us have different ratios for the different meals or times of day. Mine, for example are 1:7 for breakfast, 1:8 for lunch and 1:18 for dinner. But before you figure bolus, make sure your basal is right. The numbers that indicate your basal might be off would be your fasting, in between (or before) meals, and bedtime. You can also do basal testing by fasting for a meal - your numbers should stay stable even without eating.

One thing I learned that kept me from going up, up, up, then down, down, down, was to make changes slowly. Change your basal say by one unit and then sit with that for a few days before you change again. Don’t “react” by changing things every time you get a high or low because you’ll never get a clear picture.

Finally, 5.75 is an excellent A1C. How bad were the lows? Were they severe (30s/40s)? More than one a day? Easily recognized and treated with a couple glucose tablets? In other words, could you live with them? Doctors are notoriously worried about lows and some think decent A1Cs like that mean you are in danger - they overreact. How much did he lower your insulin by? If you are on small doses, like most type 1’s, a very small tweak can make a difference. Did he make a drastic change? For some of us, we are less stable and we always hover on that balance between too high or too low, and we have to make our own choices about what is “acceptable risk” and where we want to be on that balance. (Between tolerable occasional lows and always in the 300s I’d choose the former - but hopefully you can find somewhere more in the center.

I’m truly sorry you’re struggling, all I can say is it will get better. I’m glad you’re here.

Btw you don’t need to leave all that space between paragraphs, it makes it hard to read!
Zoe

3

1st off WELCOME!!! 2nd I was told by my dr that this is an indiviual desiese affecting each person differently. You sound like your really trying here but (maybe I shouldn’t say this but here goes anyway) My dr let me do the dosages that would work for me. LOVE HIM FOR THAT!!! I found if I try and do it their way I usually wind up in the ER.

Have u ask any dr about the pump? It has helped me GREATLY in getting my bs somewhere near. Just a suggestion.

1 Like
4

It sounds like you have Type 1, not LADA. Buy the book “Using Insulin” by John Walsh. Insulin dose is individual but for true Type 1s you can get a general, basic idea (it must be tweaked for each person) by looking at the insulin dose in relation to body weight. I don’t think you are getting enough insulin for your weight of 167 pounds. And I think the 1 to 5 insulin to carb ratio is high, masking your need for more Lantus (or basal insulin). My niece is 100 pounds, and her TDD is usually 50 units. She can go up to 65 units during a growth spurt when she has insulin resistance. So if you also suffer from insulin resistance your dose can go up higher than what would be the norm for your weight. Teens use more insulin than they will at any time in their life, doses often cut in half in adulthood, but you can use them as a reference for insulin resistance. You can use more insulin if you need to. 50 units is a good starting point, but clearly you need more. You can reduce carbs and exercise more. I think you were on the right track when your A1c was 5.7. You suffered too many lows. So you should tweak your insulin doses up, maybe at first to get to an A1c of 6.3 or so. I would concentrate on the basals, the Lantus, adusting upwards slightly, eating no carb until a late lunch of 1 or 2pm. So you will be testing the overnight period and on into a late lunch. If you are dropping, your Lantus dose is too high. If you are still high (in the absence of carbs) it will be easy to see you need more Lantus. Once your numbers are holding steady on the Lantus, adust your ICR for the breakfast and lunch hours (you may need to come way up on the ICRs; I think you will). Lastly check the evening basals. Eat no carb/low fat (chicken and green veggies, maybe chicken veggie soup) from 2pm until midnight. If you drop on the basals, the shot that effects this time period will have to be adjusted. But buy the book. There is a lot of information in “Using Insulin.”

5

Just read other’s comments… my son was diagnosed 11/14/09 and MDI was tough… love the pump… you can do temp. basal increases and decreases as needed and it keeps track of your IOB. (insulin on board) You don’t have to eat at certain times and you can choose to extend your doses… like 50% up front and the rest over a time period. These are just a few of the advantages of a pump. You can be even more incontrol if you can do these things… Wishing you the best and as many good days as you can get!

6

Hi and welcome!



I second what Zoe says. I gave up long ago following conflicting advice. The more you learn, the more you’ll be able to manage it yourself, with confidence. Sounds like you’re already doing that.



Also search these forums for TAG Bolusing - taking into account the “Total Available Glucose” in the protein and fat you are eating.



Think about an insulin pump. It has helped me enormously, when before, I was struggling to say level through 24 hours. I have several different basal rates (equals your Lantus) and different insulin to carb ratios for different times of the day. (I had those different I:C ratios even on shots.) Might be something for you to look at down the line.



One of the big things for me with an insulin pump is doing what they call a combo bolus, which is a meal bolus but given over time. Hard to do with injections, but not totally impossible. It is based on the fact that different carbs, and different combinations thereof, will take a varied amount of time to hit your bloodstream. So one dose given at the same time, for different types of meals doesn’t always fit.



I wonder if there’s something else going on for you - something you may not be aware of. Inflammation? Stress? Varied activity? So many possibilities! I hope you get to the bottom of it.



There are instances where people are actually allergic to the insulin they take so have to change. You can have “brittle diabetes” for a many different reasons, and sometimes it’s really difficult to find out what the problem is.



The books you’ve bought are the very best! Don’t lose heart! I’m LADA like Zoe and have had Diabetes since 1978, and I’m still learning - tweaking here and there, learning a new tidbit. It’s all worth it!



It’s a relentless disease and the amount you have to do when you going through the first steps, can be pretty horrendous.



I’m just wondering why you’re not doing correction boluses? I always did them when I was on injections and it not only sets you up for a decent BGL for the next meal, but helps stop an extended time exposed to high blood glucose.



Sounds like you’re doing everything possible to find answers! I’m sure being here will help.

7

Man, I’m sorry you are having such a hard time. :frowning: It’s disappointing to know we’ve done so much hard work, and then see that we haven’t made much progress. I have to tell you though, I ADMIRE that you took matters into your own hands and looked up information about your own disease. One of the hard things about our illness is that no two diabetics are alike… and we have to diligently keep going, and reading, finding new information… and doing what we can. I can probably share a few things that I know for sure…


  1. Blood Sugar 101 (http://www.phlaunt.com/diabetes/index.php) is an excellent source of information and knowledge. The writer is herself a MODY Diabetic, and that’s a very rare form of D. She has helped me a lot through this journey, and also many other Diabetics.
  2. Sometimes, it’s not just the amount of carbohydrates we eat, but also… the type of carbohydrate that we are eating. And don’t get me wrong, with this, I am not meaning to give you some meaningless schpeel about “good carbs” vs “bad carbs.” I don’t truly believe there is such a thing. To me, bad carbs are merely the ones that mess up my postprandial numbers… And yes… that means that for me, oatmeal is a BAD BAD carb, and so are certain fruit, etc. Sometimes it isn’t even carbs! I can’t eat a plain hot dog, with no bun, without spiking, and those things usually just have 1 or 2 carbs in them, per label.
  3. Sliding scale methods of insulin dosing are obsolete and dangerous. It’s good on you that you found your insulin to carb ratio. Have you also learned your correction ratio? How many blood glucose points does it take for 1 unit of insulin to bring you down? Basal testing is also appropriate, as mentioned by Zoe.
  4. Stress also affects our blood sugars enormously. I know that your glucose is high, but try the best you can to take some time to unwind, and relax. Read a book, or do some yoga, or get a bubble bath in…
  5. Unless you have some insulin resistance issues, I don’t see why you are on Metmorfin or Amyril. Those are dangerous meds, and only meant for insulin resistance and Type 2 diabetes issues.
  6. Are you taking any other meds/supplements for anything else? Sometimes those can mess up numbers big time… Including, and not limited to: levothyroxine, steroids for asthma, statins, depression or bipolar medications, too much niacin, vitamin c or a, etc.
  7. Some people can’t eat as many carbs as you do, a day. Some people have to stick to Bernstein’s 36, and they do quite well. Gerri is one person to talk to about that. She’s got excellent recipes, and ideas, and has done it for 2 1/2 years or so, with great success. She also eats no grains, no breads, pastas, no starches. Just lots of lean meats, leafy greens and non-starchy veggies, nuts, Omega 3 fats, etc.
  8. Use your meter as a barometer… to investigate how what you ate, your stress levels, or your daily activities affect you. Not as the uncompromising enemy. It’s trying to tell you something. Hard as it is, I know you can figure it out.



    Welcome to our community… I know it seems so tough right now… but I know you will find yourself. We all have, and we will help you along the way as much as we can. :slight_smile:
8

Welcome BB! You have quite a tale to tell sounds familiar to a lot of us. I don’t have any magical answers but I can tell you theere are experienced guides who can help you find your path. I’ve lived with Diabetes for 51 years and it took me almost 40 years to find my path and what helped me was a CDE (Certified Diabetes Educator). When I was diagnosed in the 1950s there were no educators so I was happy to know that things had changed in the Diabetes field to help us to manage our disease. Anyway here is a link for a website where you can find an educator where you live. http://www.diabeteseducator.org/

9

Hi Zoe;

Thank you so much for your reply. I was on 32U of Lantus in the morning - was taking it at night but had too many lows. The Dr. At the Diabetes Research Institute in Miami changed my dose to 25U split 15U in the AM and 10U in the PM. I did that for 2 weeks and that’s when the numbers started climbing into the 300 range. So several days ago I went ahead on my own and increased the dose to 30U split into 18U AM and 12U PM. Having read what many of you are saying, I see now that the Dr. brought down my dose by 7U rapidly and he should have made the change in smaller increments. Following his lead, I did the same thing when I decided to raise the dose again, going from 25U to 30U. Had I known what I know today, I would have made the changes more slowly, adding 1 or 2 units and testing to find the correct amount for me.

I certainly would rather experience a low several times a week than to be at these sustained highs. The lows were mostly around 58 although a couple of times they went into the high 30’s. I have been hypoglycemic unaware on and off which is why the Dr. was concerned about my knowing when I had a low. However, that being said, I do test just about every 2 hours during the daytime and make sure I never go to bed below 140 just in case.

As for my I:C ratios, I started out at 1:5 for breakfast and 1:10 for other meals, but seeing how that doesn’t work, I changed to 1:5 for all meals, which since it still seems incorrect, probably should be1:4.

I fixed the spaces between paragraphs which happened when I copied and pasted my post from Microsoft Word and the formatting got screwed up. Hope it reads better now.

10

Hi Doris;

I am more and more becoming my own Dr. for just the reasons you point out. As for the pump - I have no insurance so paying $6500 out-of-pocket and $350 per month is out of the question. In less than 2 years I will qualify for Medicare and I fully intend at that time to make the switch. I take up to 6 shots a day right now, so that will be a welcome change.

11

I’m sorry about the insurance thing. PLEASE do take advantage of it as soon as you can!!! Yep the pump & supplys COST! THANK GOD for insurance!!

12

Hi Jan;

Thanks so much for your very thoughtful reply. This is the first time I’ve been told that my TDD is too low based on my weight. The Dr. I saw at the Diabetes Research Institute told me that according to the weight to insulin formula in use today, I was taking too much insulin and therefore had “overinsulinization”. This was his explanation for the fact that I had become hypoglycemia unaware. However, since the dose I am on now still doesn’t seem to working, I wouldn’t doubt that you could very well be correct. I would be happy enough with an A1C of 6.3.

I also feel that my I:C ratio should be 1:4 or even 1:3 and will begin trying out those levels. I will also do the fasting starting tonight and carrying it into tomorrow as you have suggested here. Then I will tweak my basal dose accordingly. Thank you so much for all of the information you have provided. I’ll keep you posted.

13

Yup, can’t wait to have the opportunity to try out the pump in 22 months when I am eligible for Medicare. Right now with no insurance it’s too much money to pay out-of-pocket.

Thanks for taking the time to reply.

14

Hi Susi;

Thanks for your reply. I am retired and lead a pretty stress-free life - really the only thing stressful is this darn disease. As far as activity varying, no that’s not it as I lead a pretty sedentary life since having numbers over 250 most of the time. Just go for walks several times a week. No inflammation that I am aware of - no aches and pains, excellent digestion, good blood pressure and good lipids.

The only reason I’m not taking correction doses between meals is that the Dr. at the Diabetes Research Institute told me not to since he felt I was already taking too much insulin and at times have been experiencing hypoglycemia unawareness. I was taking insulin correction doses based on 1 unit bringing me down 15 points.

I’m very glad to have become a member of this wonderful site and thank everyone for their replies.

15

Hi and thank you for your very informative and thoughtful reply. Let me supply a few answers to your questions and make a few more comments.

First, I was put on Metformin and Amyril on the cruise ship because the Dr.on board assumed I had type2. Since none of the testing could be done on the ship, when I was hospitalized in Florida, and was found to have type1, I was taken off the oral meds which were not working at all, and switched to insulin injections.

I know what you mean about the “good carbs/bad carbs” thing. I have the same experience eating less than 5 carbs and spiking. 1/2 an apple and 1/4 cup of granola will do me in. As for the other meds I take, you hit the nail on the head. I currently take Levothyroxin the dose of which has been pushed up due to my changing thyroid levels. I also take daily doses of Simvastatin 80mg, Losinopril/HCTZ 20/12.5 (for blood pressure) and 20 mg of Prozac (over 20 years). All of my Drs. have known about my other meds, but not one of them has expressed the possibility of them affecting my blood sugar. I assume that is because they can’t really do anything about it as I need these medications.

I discovered bloodsugar101 several months ago and agree that it is a very helpful website. I haven’t resorted to the 36 carbs a day regimen of Dr. Bernstein because I honestly think the deprivation I would feel could turn out to be the straw that broke the camel’s back. I will try everything else I know of and resort to that only when and if I am ever ready to admit defeat. I have given up cereal, bread, white potatoes, rice and pasta (except Dreamfields).
I occasionally eat 1/3 of a sweet potato and Dr. Krackers very low carb seeded crackers. That is the full extent of the “starches” I will allow myself.

So glad I found this wonderful place to communicate with like-minded kindred souls. Thanks to all of you.

16

Thanks Betty. I have already been to see a CDE/Nutritionist and used that same website to find her. Wish that her information and advice was all that I had needed to find my path, but my case seems to be more complicated for now. I will try to stay positive and having the support of the people in this network, will make it a little easier.

17

Looking at your numbers, bb, it sounds like you have a fair degree of insulin resistance. For a new type 1 you are taking a fairly large dose of insulin and you have a very low insulin:carb ratio. That would bring me to two possibilities: The first is the possibility that you are actually a type 2. Have you had c-peptide and antibody testing to confirm your type 1? The second (more likely) is that you are one of the unlucky ones that have both insulin deficiency and insulin resistance. That definitely can make life hard.



There are some things that can be done to reduce insulin resistance such as adding an oral medication to your regimen, and/or losing weight. If you lower your insulin resistance you will be able to take less insulin and that will make your diabetes easier to manage. Something you might want to talk with your endo about.

Btw I’m partly retired too and I am so thankful that I didn’t get my diabetes diagnosis until middle age. (I was diagnosed a month before retirement). I have nothing but awe for those diabetics who manage this condition at the same time as working fulltime, raising a family, etc. Especially during the early stages the learning curve is so high that everyone should automatically be given a month or two off! You say your life is not stressful, but don’t underestimate the stress of trying to figure out your diabetes…it’s huge!

18

bb,

I think you did a tremendous job of getting those books and learning how it all works! I agree with all these great people around here. I’m glad you’re going to check about the basal doses first. Along the way you’ll find there may be a peak in your Lantus, and you’ll want to take that into consideration when bolusing.

I looked up in my charts for 167 lbs. TDD is 41.75 units. That doesn’t mean it’s absolute. That means that without any resistance, you may hover around there. I also looked up the regimen by Kilograms, and it would be around 38 units total long acting and short acting daily. Again if there’s no resistance. Most take 50-60% of that TDD in boluses.

I like tweaking UP, rather than DOWN, once you have a near-your-goal basal dose. My own basal is only 33% of my TDD. So you can see how far one can get away from what they say “should be”. Nothing is “should be”.

I’m glad DWQ asked about your sensitivity: it’s something to test when you get a bit more stable. How far does 1 unit of short acting insulin reduce your mg/dl? Then you will be able to determine what insulin is on board and you will be ready to do corrective shots. All of this helps the body to stabilize at a near normal.

DO raise your target and center into 120 mg/dl for awhile to get rid of your hypoglycemic unawareness. As you eat small amounts more frequently, say 4 meals a day, you’ll find it easier to handle smaller amounts of insulin, too.

Test about 4-5 hours after Dreamfields. I have tested at 3 hours and all was well. Between that and 5 hours my glucose skyrockets!
Best wishes! We’re all hugging you.

19

Not sure, what you mean exactly by “you can’t go half Bernstein” but many of us do use somewhat more carbs than Bernstein but less than the typical diet and do quite well. I totally admire people who follow Bernstein completely and am impressed with their results. For various reasons it isn’t what I choose to do, but I own his book and utilize many of his principals (such as the law of small numbers) while eating more carbs than he recommends (I stay under 100 a day). YMMV

20

BB,
I forgot to mention that at 167 lbs, 2.5 grams will raise you 10 mg/dl. You can take it from there and see that 25 grams raises you 100 mg/dl. And all the points in between usually hold true, too. 5 grams will raise you 20 mg/dl.; 10 grams should raise you 40 mg/dl. 15 grams raises you 60 mg/dl, etc.