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kona0197

At the end of my rope...

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kona0197

So I have type 2. I eat a good meal once a day, and use low carb snacks to fill out the rest since I usually sleep all day becuase I work graveyards. I take my meds, as prescribed, religiously. I exercise on my bike daily including long 30 miles rides once a week. 

 

And yet...

 

My A1C is still near 15. My blood sugar readings are always 250 to 500. I've had this since 2014. 2015,2016, and 2017 were fine. No matter what I do now does no good. Doctor has increased my long acting insulin to 100x2 a day. I take my short acting insulin every time I eat. I'm on Metformin. 

 

And none of it helps. I'm scared to eat, I'm dizzy all the time, sometimes the Metformin gives me the craps, my feet tingle, and honestly I'm just done with it all. 

 

...Not sure what to do here...

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meyery2k

One possibility may be that you are a type 1.5 or misdiagnosed type 1.  Have you had the antibody tests done?  I have seen other posts of similar content where this was the case.  

 

From what I understand, it is very frustrating trying to treat 1.5 with Type 2 strategy since the underlying problem is different.

 

Has the doctor considered or discussed the possibility of this?

 

I am certain someone that uses insulin might be able to offer some advice.  Maybe a different approach will help.

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Kit

Hi Kona, welcome to the group.

 

I was just thinking the same as Mike.  Have your doctor's given you a c-peptide test and tested for antibodies?  Those numbers are really high, especially with Metformin and insulin.

 

Now that said, could you give an example of what you mean by low carb.  The "low carb" diet that I was given at diagnosis kept me in the 200s.  An example of the types of things you are eating will give us a better idea on where you might be able to make tweaks to in your diet to improve things.

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kona0197

I have been given no tests of any kind. None.

 

As for my diet, like I said I sit down to usually one meal a day. I'm not really hungry for the rest of the day as I deal with depression a lot. My meals are usually are small, like a bowl of chili with cheese and crackers, a bowl of beef stew, a bowl of soup, maybe a few of those little burritos you get in packs of 8. I work at a fast food place, while there I will have a lettuce wrapped burger with cheese once or twice a week. My snacks are mixed nuts, raw almonds, popcorn with no butter, handful of cheerios. I only drink water or one cup of coffee at home, and nothing but diet coke or diet Dr. Pepper at work, and very little of either of those. 

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meyery2k

Why would the doctor refuse?  Would you consider seeing a different doctor?  If my doctor did that, I would be out the door.  With diabetes, the unfortunate thing is that we often have to take the bull by the horns.

 

So many doctors give the line that diabetes is progressive and there is not much one can do.  It astounds me how there is a lack of open minded thinking in the face of practical evidence.  Some doctors and dieticians will tell us we need to eat more carbs when the simple truth is that we do not need to eat ANY carbs.  Obviously that would be a boring and largely unsustainable diet so we limit them as best we can.

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kona0197

I'm on the State insurance plan. My options are really, really limited. For example they had to pull in favors just to get my CPAP machine and that was years ago. :/

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meyery2k

Many of us, whether we use insulin or not, find that if we avoid the simple starches and sugar, have a much easier time controlling this.

 

Try to cut back, or eliminate, rice, grains, bread, and pasta.  Root vegetables like potatoes also have a lot of simple starch.  These are readily converted into glucose.  Beans can also introduce a lot of starch.  Popcorn and cereal also prove troublesome for many of us.

 

Burritos - I miss those.  I was going to be the diabetic that would eat tortillas.  I found that was not going to work for me.  I now make a burrito salad.  I find I don't miss the tortilla at all anymore.

 

Stews and chili  - If they come from a can, they are probably thickened with starch or have sugar added for flavoring.  It takes a little adjustment and time, but homemade not only tastes much better but it is also better for you.

 

Non-root vegetables are great.  Zucchini, mushrooms, cauliflower, broccoli, kale, leafy lettuce, and so on can be used in so many different ways and with so many different spices, they are not boring.

 

Skipping meals is generally not a good idea.  This can cause your liver to dump glucose.

 

It does take some discipline, no lies there, but it can be done.

 

Here is my idea.

 

Today - Keep track of how many grams of carbohydrates your meals have.  Total up for the day.  Going forward, try to start cutting back to 100g per day if you are over this.  Eat to your meter.  Take note of what your BG is before you eat.  Measure 2 hours later.  If something causes a large spike then avoid it.  No matter what type of diabetes you have, this will help you control it.  It is a mistaken belief that insulin just magically counteracts whatever glucose you have.  People that use it regularly will tell you differently.  Log your results.  Be patient.  It takes time to rein this in.

 

Check out the recipes.

 

Ask us anything, we are here to HELP. ~ Mike

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kona0197

I have counted my daily carbs for a day before. I rarely go over 100. Today all 3 of my meter readings - spaced 2 hours apart each - have been 500 to 600. And I haven't had anything to eat and the 200 units of Levemir isn't doing anything. This has been going on for a year now. I'm close to just saying screw it all and let it kill me. Because taking the meds is doing nothing.

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Kit

Well it seems the forums yet again are not allowing me to post.  I have no clue why this happens on just about every welcome post I make.

 

To simplify and see if this will take.

 

Check out our Dieting and Nutrition section.  There are a lot of good information such as recipes, eating out, low carb products, and similar.

 

I recommend checking out Dr Bernstein's The Diabetes Solution.  He is  T1 diabetic who specializes in treating other diabetics.


https://www.diabetesforums.com/forums/forum/8-dieting-and-nutrition-for-diabetes/

A lot of the book is available for free on his web site.

 

Using Insulin by John Walsh and Think Like a Pancreas by Gary Scheiner are considered the bibles when it comes to properly using and dosing insulin.  And this is especially a vital subject when dealing with T1 or T1.5.
Edited by Kit

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Kit

Lets see if I can add more information now.

 

Doctors can be so frustrating when they get stubborn and refuse to look into issues further. I wish I had some suggestions for you there other than switching doctors or paying for your own lab tests.  It can be expensive because insurance won't pay for it, but many places have walk in labs where you can actually order your own tests to be done.  C-peptide (showing how much insulin you make) and GAD65 (one of the antibodies found with T1 diabetes) are the most common, though there are other antibodies that can be found as well.  But again, you would have to pay out of pocket here.

 

When I was first diagnosed, I was told to eat 30g of carbs per meal and 15g of carbs per snack (3 snacks a day).  I skipped the snacks pretty quickly, but it was still keeping me up in the 200s.

 

I now average under 30g of carbs per day instead of meal.

 

Lettuce wrapped burger is a good selection.  Pair it with a small side salad if available, and its a pretty good choice.  Be careful of dressings though.  Most of them are pretty packed with sugar.

 

Cheerios is 20g of carbs per 1 cup serving.

A frozen bean and cheese burrito (El Monteray) comes in at 44g of carbs
1 cup of Hormel's Chili with beans comes in at 34g of carbs
Popcorn (I miss popcorn) comes in at around 22g carbs per ounce.
 
 

Metformin can cause digestive issues.  From what I understand, those side affects are usually worse the more carbs you eat.
 
 
Now Metformin doesn't actively lower your BG levels.  It instead helps with insulin resistance.  Insulin should very directly lower your BG numbers.  I don't take insulin myself, so I can't comment with specifics on dosing, but most primary care doctors are totally clueless on how to properly dose insulin.  Slow acting insulin is used to counter the glucose our bodies manufacture, store, and release.  Fast acting insulin is used to counter the carbs you eat during meals.  Those doses should NOT be static but instead based upon the meal you are eating.
 
<giving up here trying to get the forum to accept the rest of my post>
Edited by Kit

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steel

I am new here, so I hope I am not speaking out of turn. I was doing some research on antibodies. As @Kit said, the most common are GAD antibodies. The second most common in T1.5 are ICA. Some t1.5 test negative for GAD but positive for ICA or another antibody. I am sorry your doctor is so incompetent. :( Antibody testing is expensive but absolutely valid in your case. I've read a lot of people have had to pay out of pocket for antibody testing. ARUP Laboratories offers all five of these tests, but they require a health professional's (I am thinking doctor Nurse Practitoner) referral. I am sure there are other labs out there, but they were the first ones that came up in my searches, so I mentioned them. Can your doctor provide a referral, if/when you are able to self pay?

 

You may very well be Type 2, but as other members said, a lot of T1.5s report similar trajectories hence the caution and suggestions for testing. Even GAD and ICA tests might be helpful, if the full panel isn't possible at this time.

 

The following are commonly tested (with the exception of ZnT8 as it's a newer test).

 

GAD: glutamic acid decarboxylase autoantibodies

ICA: islet cell cytoplasmic autoantibodies

IA-2: insulinoma-associated 2 autoantibodies (IA-2)

ZnT8: zinc transporter 8 autoantibodies

IAA: Insulin autoantibodies

 

 

https://adultt1diabetes.blogspot.com/p/blog-page.html

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Hammer

Kona, with readings in the 500's and 600's, I would think that you are no longer a type 2 diabetic, and most likely, a type 1.5.  I am a type 2 who uses both a basal insulin (Lantus) and a bolus insulin (Novolog), and I have never had readings that high since I started using insulin.

 

You said that you use Levemir, and I use Lantus.  When using a basal insulin like these two, you need to adjust the dose on your own to get the desired fasting BG levels.  When you have been fasting for at least 4 hours, your glucose levels should be below 100 (I like mine to be in the 70's, but that's just me).  If your fasting levels are above 100 (or whatever you feel is right for you), then you need to increase your Levemir dose until you begin to see BG levels where you want them to be.  Keep in mind that whatever dose you arrive at that gives you good fasting BG numbers, will be constantly changing.  By testing every day, you will find that your fasting BG levels will be constantly changing, and in my case, if I see that my fasting BG levels are too high or too low for three days in a row, then I'll adjust my Lantus dose. 

 

When I first started taking Lantus, I tested my fasting glucose levels every day, saw how high they were, and increased my Lantus dose until I was finally able to get my fasting BG levels down into the 70's.  The dose that I finally arrived at was 156 units of Lantus every night at 11 PM.  Since then, my Lantus dose has been as low as 48 units a night, back up to 92 units a night, and now it's at 57 units a night, so it's constantly changing, based on what my fasting glucose levels are.

 

You didn't mention what your rapid acting insulin is, but it's probably Novolog (which is what I take) or Humalog.  In order to determine how much of the rapid acting insulin you need to take before a meal, you need to determine your insulin to carb ratio....in other words, how much insulin to take when eating "X" amount of carbs.  To determine that, you need to start off by counting the carbs in the food you are about to eat (if you aren't sure, Google the food and add the word "nutrition" after the name of the food.)  Use your meter to do a glucose test.  You then take 1 unit of the rapid acting insulin for every 20 carbs the food contains.  Wait a few hours, then take another BG reading with your meter.  If your after meal reading is a lot higher than your before meal reading, then you know that you didn't take enough insulin.  At your next meal, take 1 unit of rapid acting insulin for every 18 carbs that the food contains.  Check your BG levels before you eat the food and two hours after you've eaten.  If your after meal BG levels are still higher than your before meal BG levels, then at the next meal, take 1 unit of insulin for every 16 carbs in the food you are about to eat.

 

You keep doing that....taking 1 unit of rapid acting insulin for a lessor number of carbs in the food you are about to eat until you find that your after meal BG levels are close to your before meal BG levels.  Keep in mind that you don't want your after meal BG levels to be LOWER than your before meal BG levels, because that would mean that you took too much of the rapid acting insulin.  If your fasting BG levels were, say, 100, and your after meal BG levels were, say, 90, then that's not good.  Sure, a 90 looks good, but your fasting BG level was at 100.  If you were to increase your basal insulin, the Levemir, until you got your fasting BG levels down to say, the 70's like I prefer, then your before meal reading would be, say, 75, and your after meal BG would be 10 points lower than that, or at 65, so you don't want your after meal BG levels to be lower than your before meal BG levels.

 

Yes, it does take a bit of experimenting to arrive at the correct doses for both insulins, but once you get there, it makes maintaining good BG levels a lot easier.:)

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kona0197

My Doctor ordered a C-peptide test and serum insulin level test to determine if I am a type 1.5 or 2. Anyone have any idea what needle size they use for thee? Needles scare me...

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dowling gram

Needles shouldn't scare you. Most people who are afraid of needles were scared of them as children and as a result got them with tense muscles which made them hurt far more than if given with  relaxed muscles. While you are waiting to be called in for your test sit in a comfortable position. Close your eyes and try to relax your muscles. Breathe deeply through your mouth and exhale slowly from your nose. Empty your mind, if a stray thought creeps in push it away and concentrate on listening to your breaths. That's meditation and it will relax you-- maybe so much you won't even feel the needle

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Kit
45 minutes ago, kona0197 said:

My Doctor ordered a C-peptide test and serum insulin level test to determine if I am a type 1.5 or 2. Anyone have any idea what needle size they use for thee? Needles scare me...

 

Well that is a start.  Those tests won't say if you have antibodies, but will at least let you know how much insulin you are making.

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Dave_KC

That's a great start.  Any news on the results?  

 

BTW, I totally recommend what @Kit suggests on diet.  I aim for 30 grams or less per day, which has hugely helped my numbers.  

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kona0197

Bit of an update...

 

My fasting sugars remain high at 300+, my normal day to day sugars are around 250 to 400. Taking 160 units of levemir daily now. Just got back on my meds after not using them for a month. Been forgetting to use my short acting during work where I snack a lot. Been eating once or twice a day, trying to stick to low carb. Also been trying to cut soda out of my diet completely with little success. I mostly drink diet powerade. Been losing around 5 to 10 pound every three months, doc says it's high blood sugar effects. Feet are OK, they tingle sometimes. Been tired a lot but I think that's related to my sleep apnea. I've been getting plenty of exercise every week, around 30 miles on my mountain bike. Just rolling with it right now. Hopefully being back on my meds solves this all before I die from it...

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IrinaHarr

Hi Kona0197,

Lack of water and some kind of infection could raise blood glucose really high and then it is hard to get it back down.

When I was diagnosed I had 490 blood glucose, I became diabetic after I contracted rocky mountain red fever spread by a tick. And it was hot Summer, I was dehydrated, and it was going on and on till I noticed something wrong. Then I could not get my BG below 200 on recommended diet, I found this forum and went low carb. For example, check out what ShottleBop eats daily - his situation is different of course from yours - in low carb daily diet thread.

 

Dr. Bernstein's Diabetes Solutions helped me a lot, the science of small numbers states that it is much more manageable to control blood glucose when carbs intake is 6g morning and 12g at dinner and 12g at lunch. You can join his teleseminar or ask for help , he has one January 30th evening I believe. His way helped me a lot as well. 

 

Your blood glucose so high, I would go to hospital and perhaps fluids and insulin would help to get it under control. Something is going on, like you had bad cold or flu and levels keep climbing. But that's just me I freak out and run to see a doctor. 

Of course you are depressed, you feel like you cannot control this but there must be a way.

 

Hope your tests will help to figure out what's happening in your body.

Looking forward to hear from you!

 

 

 

 

Edited by IrinaHarr

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