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kona0197

I'm super worried...

25 posts in this topic

So I've been having a LOT of issues with both my A1C and blood sugar levels. I was diagnosed with type 2 a few years ago, and I went from a A1C of almost 15 down to a 4.9 in about three months thanks to a lot of persistent and regular exercise along with eating right. I was doing so well that I was taken off my insulin. I've managed to have an A1C of 4.5 to 5.9 these last few years. Problem is the last few months. The A1C has jumped to 9. I've been back on my insulin. I'm still exercising. I'm eating as well as can be expected, I am a manager at a local fast food place so I get free meals there, and I mostly eat low carb chicken offerings or a salad. What has me on edge is my blood sugar levels. They used to be anywhere from 90 to 160. Now they are anywhere from 250 to 425. And it seems I am more thirsty all the time and have to use the bathroom like every hour.

 

I am a bit scared, I was curious what everyone thinks. I can't get in to see my Doc till next month, and this is not quite emergency room or urgent care stuff. I just don't want to lose my legs or have my kidneys explode cuz they are working too hard. I'll be damned if this is the way I go out, lol. 

 

Thanks in advance. 

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Few questions to help with people giving you ideas/answers..

 

Are you taking basal or bolus insulin?  How long has this been going on?

 

A basal insulin which is what most T2's seem to take really does very little to help bring down spikes like that.  You really need a bolus insulin to bring it down quickly.  If this is only a few days, I'd point to sickness or some short term issue that should clear up.  If its been a couple weeks then I would get myself some bolus insulin ASAP.

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Kona - Many of us here have found diet and exercise to have profound effects on management.  If you would care to share with us what you are eating in more depth we may be able to offer pointers.

 

Eating right can be defined so many different ways.  If you are eating right by the standards of the American Diabetes Association, you are likely consuming too many carbohydrates which will make management difficult with or without insulin.  If you are looking for "low fat", many of these use carbs to improve taste and texture.

 

One surprising source of carbs are actually the salads at the fast food place.  While the salad and the grilled protein is great, ALL the dressings including the ranch dressings have an unexpectedly large number of carbs. 

 

Perhaps this can be brought under some control in the short term until you can see your doctor.

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Hey guys, I forgot to add that I am taking 40 units of Levemir a day, along with 12 units of Novolog per meal when I can have a decent meal at home. Lately it's been just the fast food offerings. I'm also on 1000 Mg of Metformin a day.

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Kona, don't worry about your unusually high BG readings for now, the thing is, try to determine what it is you are eating that might be causing those high readings.  Also, what insulins are you taking, and how are you determining the proper dose to take?  I am a type 2 on both a basal insulin, and a bolus insulin.  My goal is to find the correct dose of my basal insulin, meaning that, when I haven't eaten for a long period of time (usually four or more hours), I want that basal or base glucose level to be in the 70-80 range....this is what my basal insulin, Lantus, does for me.  Once I have been able to determine what my basal insulin dose should be, then I concentrate on my bolus, or before a meal insulin dose should be.

 

My basal insulin, Lantus, has no effect on my after meal spikes....for that, I need a bolus insulin (a rapid acting insulin) like my Novolog.  By taking the correct amount of a bolus insulin, you can keep your after meal spikes from spiking too high.  While we each have different goals for our BG numbers, I want my fasting BG levels to be in the 70's, which they usually are.  I want my after meal spikes to be under 120, which they usually are.  While my BG levels may sometimes exceed what I want them to be, that's okay, since I can adjust my insulins to correct it.

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You might also look into the availability of U200 insulin if you are using Levimir pens.  With U200, you still take 40 "units", but it is twice as concentrated so you are injecting half the amount.  I found when you start hitting 30 units or more that is quite the volume to be injecting into yourself on a regular basis.

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Have you been tested for antibodies?  I may not be correct, but your behavior is sounding like a late onset T1 (LADA) or type 1.5.

 

Its a slow onset and you started using insulin.  That can give things a break enough that external insulin needs drop significantly, often called honeymoon period.

 

My main concern is how very high your numbers have become.  Unless your diet has significantly hanges since you were at more normal levels, I have a lot of trouble believing that the same diet would send you so high.

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That is correct. My diet has been the same for the last 3 or 4 years, no major changes. I was pulling low numbers, no insulin needed. Now I'm having very high numbers and it seems the insulin does not help. I am also noticing tingling in my feet. My main questions are if this is gonna kill me even though I'm trying hard to prevent it, and if it's gonna wear out my kidneys. 

 

(I can really become a type 1?)

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It's not surprising that you are feeling a tingling in your feet, that is a sign of early neuropathy.  I had that feeling in my feet also, but once I started on insulin and got my BG levels down to a more normal level, that tingling feeling was replaced with pain...pain due to the fact that the nerves in my feet were being repaired.  Once the pain stopped, I was fine.

 

I am not a doctor, so what I say can be taken with a grain of salt, but if you are having high BG levels, you might be a type 1.5 or even a type 1....it can happen.  What insulin/s are you taking?  If you are using a basal insulin like Lantus or Levemir, then what are your morning wake up readings?  If you are taking the correct amount of Lantus or Levemir, then your morning wake up readings should be below 100.  If they aren't, then you are not taking the correct amount of your basal insulin....you might want to think about increasing the dose until you get a fasting BG below 100.( I like to have a fasting BG in the 70's, but that's just me.)

 

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That is correct. My diet has been the same for the last 3 or 4 years, no major changes. I was pulling low numbers, no insulin needed. Now I'm having very high numbers and it seems the insulin does not help. I am also noticing tingling in my feet. My main questions are if this is gonna kill me even though I'm trying hard to prevent it, and if it's gonna wear out my kidneys. 

 

(I can really become a type 1?)

 

 

Not so much become a T1, but have always been a T1.  It is very common for a LADA (T 1.5) to be misdiagnosed for a number of years because it rarely comes on as obviously as it does for someone much younger.

 

In your situation, I would pester my doctor for a c-peptide and antibody tests.  Last I looked there are 5 total antibodies, though I believe gad65 is the most common seen in LADA.

 

The C-peptide test measures how much insulin your body is making.

Edited by Kit
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I am supposed to take 20 units of Levemir in the morning and at bedtime, and I do so as directed. Even since I have been dianosed I have NEVER had a fasting blood sugar level under 100. This morning it was 335. My last few testings have been 358, 179, 309, 359, 304, 469, 374, 485, 403, 378, and 305. Those readings were for the 16th through today. I used 2 different meters to make sure my main one was not giving false readings. Last year I was anywhere from 80 to 200. This new stuff scares me. 

 

Not sure I want to take more than 40 a day, the Levemir just to sting after injecting about half. 

 

Would a insulin pump be a better way to go?

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With those numbers I would listen to kit, you need to determine if you are T1 or T2 .

That will determine how you can control your diabetes.

The best diagnosis is the correct diagnosis

Edited by Fraser
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I was already diagnosed 2 years ago as a type 2 by my Doctor. Had no trouble controling it till now and almost nothing has changed in my life. 

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Except your BG is very high.

Just talk with doctor double check the diagnosis

In my opinion there are only two two options just ignore it,

Or accept what you need to do to control diabetes

Edited by Fraser
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I was already diagnosed 2 years ago as a type 2 by my Doctor. Had no trouble controling it till now and almost nothing has changed in my life. 

 

Yes, and I was diagnosed at age 70 as a type 2 by my doctor also. She treated me as a type 2 for a year and a half while I struggled on pills designed for type 2s. When she finally referred me to an endocrinologist, he put me on insulin right away before he even got back the results of the antibody tests. And yes, I tested positive to two of the antibodies. I should have been on insulin and treated as a type 1 all along. There is a very high proportion of type 1.5 LADA (latent autoimmune diabetes of adults) on this board who were initially misdiagnosed.

 

"Type 2" is basically a diagnosis that indicates "it doesn't fit any other category." But most of the time individuals have never been tested for the antibodies.

 

Edited to add:  I'm not pretending to diagnose you. But your symptoms would certainly suggest the need to explore the possibility that you might have also been misdiagnosed.

Edited by Uff Da
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I visited the Emergency Room tonight as I was feeling horrible and my sugars were in the 400s. The Doctor there did all sorts of tests. My A1C is at 9.7. He confirmed that I was a type 2 from all the tests. He tested for ketoacidosis and I don't have that. They gave me an IV of fluids because I was dehydrated I guess, even after all the water I drank. He also upped my insulin to 50 units a day and my Metformin to 2000mg a day. Not sure if all this is gonna help. 

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Kona - Did they run the antibodies tests?  Emergency room care is good but the primary purpose is to stabilize you and get you out of there.  If I may be frank, the goal now is to determine what is going on.  If you can, get a copy of any labs that were done and see if those antibody tests were run.

 

If you are a T1 or T1.5 and treating this like a T2 you will find yourself beating your head against the wall with control.  It is my understanding that there can be a sort of "honeymoon" period where control is relatively easy and then, suddenly, as enough beta cells have been destroyed control becomes much more difficult to manage.

 

You may also, indeed, be a T2 and just need more insulin now as that happens too.

 

We keep harping on this because there is a lot of misinformation about diabetes and sometimes even the doctors are not informed.  With diabetes, we find that we have to be in charge of our treatment.  No one else have a vested interest in doing this for us so we need to do it for ourselves.  If we listened exclusively to the ADA and 40 year old advice we would not be doing so well.  This forum strongly challenges the conventional thinking but backs it up with actual results.

 

In an earlier post Hammer has provided some excellent advice regarding basal readings and adjusting your insulin to get that dialed in.  The basal is important since that is your "running" rate during the day.

 

Believe me, we want to help you and not be argumentative.  There are many here that have experienced what you are going through and they have been able to get things managed.  It is going to take some work and persistence on your part but it can be done.

Edited by meyery2k
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Kona, just to let you know, when I first started on a basal insulin, I use Lantus, which is similar to Levemir, I was told to start off with 8 units every night at about 11pm.  I did that, but it had no effect on my morning wake up readings.  I called my doctor and was told to increase my nightly Lantus dose by 2 units, wait three days, and if there was still no effect, to keep increasing my dose by 2 units until I began to see a noticeable drop in my wake up readings.  After doing this for a while and not seeing a drop in my wake up readings, I decided to increase my nightly dose by 5 units.  I did this for a short period, then I began to see my wake up readings drop significantly.  Once I saw that drop, I went back to increasing my Lantus dose by only 2 units until my wake up readings were at 100.  Once I hit 100, I would only increase my Lantus dose by 1 unit, until I woke up to readings in the 70's.  At that point, I was taking 156 units of Lantus every night.  I was extremely overweight at that time, and once I switched to a low carb diet, I began to lose weight.  As I lost weight, my Lantus dose needed to be decreased.  Now I take 43 units of Lantus every night, but that dose changes from day to day, as does my Novolog dose.  My BG meter tells me what I need to know in order to determine my correct dose.  If I gain or lose just one pound, I need to adjust my insulin dose, so my insulin dose is never fixed, it's always changing.

 

My way of thinking is that, if the doctor recommends adjusting my insulin dose to a certain level, then I will, but if that adjustment doesn't lower my glucose levels, then I will adjust my insulin dose on my own until I see good results.  I don't need my doctor's permission to increase my dose, because I am the one who is reading my meter and seeing what my glucose levels are, so if I see that my glucose levels are too high, I know that I need to increase my insulin dose.

 

One thing that could also be a factor....your insulin might be bad.  I have had this to me happen numerous times.  I use the insulin one day, and it's fine.  The next day when I use it, it does nothing.  It went bad overnight  When insulin goes bad, it basically becomes inert....it does nothing.  It's almost as if you are injecting water.  What you might want to do is to ask your doctor for a sample of that insulin, typically an insulin pen, and use that to see if there is any difference in your BG readings.  That will let you know if your insulin is bad.

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Here is a list of the tests the ER preformed last night:

 

Basic metabolic panel

Blood gas, venous

CBC auto differential

CBC with differential

Hemoglobin A1C

Troponin T

UA w/ microscope and/or CAS

Unine microscope UCIF

 

I did ask the Doctor, out of curiosity, if a T2 can develop into a T1, and he said no, that does not happen.

 

I have a weird work schedule so I am taking my morning meds and injections most days around 5 PM, then my evening meds and injections around 9PM before I go to work so that may be a factor. And I usually get out for a 20 mile ride on the bike twice a week but due to horrible weather here in Oregon, I have not been able to get out. That might be it. But my weight has remained constant at 270 for years, so I don't understand that part. And I still use the bike for communing and errands so I'm doing around 5 miles a day. 

 

I'm just as confused as everyone else...

 

Ii just got up and my sugars are at 301. A little bit better than they were last night at 400+

 

As for my insulin being bad, that might be the truth of the matter, I've had this Levemir for a month now. I get a new bottle on Monday. I do have some Lantus here as well, it's been chilling in the fridge for about 2 weeks. 

 

BTW if anyone is curious about my diet, I mostly eat at work, and that's fast food. I'll have a burger maybe 2 or 3 times a week, but other than that I'm snacking on fries, nuggets, veggies, bacon, cheese, hamburger or chicken patties, and every now and then chocolate. I'm also drinking soda, I know it's bad for me. Been trying to limit myself to water, Powerade, and vitamin water, but I so love Coke. At home I eat what I can, I don't have much here except noodles and other high carb foods. Not much I can do on a $40 dollar food budget for a month. 

Edited by kona0197

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Here is a list of the tests the ER preformed last night:

 

Basic metabolic panel

Blood gas, venous

CBC auto differential

CBC with differential

Hemoglobin A1C

Troponin T

UA w/ microscope and/or CAS

Unine microscope UCIF

 

I did ask the Doctor, out of curiosity, if a T2 can develop into a T1, and he said no, that does not happen.

 

None of those tests are autoantibody tests. None of them differentiate between type 1 and type 2 diabetes.

 

And methinks you phrased the question in a way that would automatically get a "no" answer. It is not that a real type 2 becomes a type 1. It is that they were never tested for autoantibodies in the first place, so the original diagnosis was wrong. They were misdiagnosed. Some doctors seem to think that anyone who gets diabetes as an adult is automatically a type 2, and especially so if they are overweight. But even overweight adults can get type 1 as an adult. It is estimated that as many as 10% of adults diagnosed with type 2 are actually misdiagnosed type 1s.  See the following link:

 

https://www.diabeticlifestyle.com/type-2-diabetes/6-signs-your-type-2-diabetes-might-really-be-type-1-0

 

Now, since you are already on insulin, your treatment probably wouldn't change a lot, even if you are actually type 1. But be aware in the future, if you have reason to think you might be type 1, there can be some advantages to a type 1 diagnosis in some situations. Insurance programs and government programs sometimes provide better benefits to those with type 1 than those with type 2. (Test stips, CGMs and insulin pumps, for example.) So you might want to request those antibody tests.

 

Now to the immediate problem. I'd strongly recommend you read either Using Insulin by John Walsh or Think Like a Pancreas by Gary Scheiner. If your doctor is a bit behind the times like mine was, the information in these books may help you determine what questions you ought to be asking and also if you need to find a different doctor. Your public library may have a copy or you can order them online. I used the first one I listed as basically my "insulin bible" to get my doses set after my endo set starting doses and was then going to turn me over to my PCP.  Based upon my previous experience with her, I knew she was outdated in her approach to insulin, so I used the info in that book to get my correct doses calculated before I even went back to her.

 

From your comments above, it appears that you may be on basal insulin only - your Levemir. I suspect with the numbers you are showing, whether you are a type 1 or a type 2, that your condition has progressed to the point you will need to be on meal time insulin, as well. It may be tough to do so, but I'd sure cut the bread, rice, pasta, fruit, etc in my diet way down if I were running high numbers like that and still had weeks to go before my doctor appointment

 

You might want to try to get in earlier. See if they'll call you in the event of a cancellation, for example.

 

And please keep us informed as to how you are doing. We care.

Edited by Uff Da
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No, I have Novolog for short acting as well. Just no time at work to go back and inject myself every two hours as I eat all the time I'm there. And while I can cut the carbs at work, nothing I can do at home due to budgets. 

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Kona

I am impressed of your understanding of what you rare eating.

The rest is one step at a time. If you are drinking real Coke try Diet Coke yes I know yuck

But I finally made the trasition.

You are doing great job!

Edited by Fraser
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Kona - It can be tough to change but it can be done.  Small changes can lead to big ones.  I have found that once I got my LC diet dialed in, I really end up spending about the same amount of money every week.  While it is true that I get less quantity of food, I certainly get better quality and I get to eat enough to be full.

 

Look for sales.  Many times great meat can be had cheaply because the store has to sell it that day.  It can be frozen and used later.  I picked up a choice NY steak, 12 ounces, for $6 today.  That will be 2 meals for me along with vegetable sides.

 

We would love to see you live with this so I do hope you will join us. ~ Mike

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Well I managed to have sugars around 120 at work. I stayed away from any sodas with carbs and did my best to eat stuff with little or no carbs. I also used 12 units of short acting insulin when I started work, and 12 more after about 6 hours. I am also taking my 2000mg of metfomin twice a day. The only issue I am having is tingling in my feet. I does not hurt, just mildly annoying. I woke up to a sugar level of 268. Better than 300 or 400. 

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Kona- Great! Keep it up! When I was first diagnosed, I was waking up at 275 +. Doing low carb seriously has gotten me to fasting in the 80s and being taken off Metformin. It would be great to see how far you can take this.

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