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pat593

Yup, really a Type 1.5!

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pat593

After trying every suggestion here from the Type 2’s and feeling defeated that I just couldn’t get my A1C under control (of course, my fault, must be doing something wrong!), I asked my primary to test me for GAD and C-Peptide. 

 

Humoring me, he ordered the tests. When they came back way out of range, he decided I needed to go see the Diabetes Group up at Yale.

 

Yup, I’m a Type 1.5 or Type 1 as the doctors at Yale confirm.  Just thought I’d share with you all because if people on this forum hadn’t suggested that I be tested for Type 1, I doubt I would have been.

               

Yale is great but they still use the standards set forth by the ADA.  They think I have great control because my A1C’s are coming down.  I know that’ a function of the Lantus making me go low in the late morning and the fact that I really limit carbs. I still spike to over 200 if I eat more than 20 grams.

 

Any opinions on the following?

 

                Metformin – I have been told to try decreasing the Met by half for a week and then stop taking it.  I’ve read so many recent articles suggesting Met may be of some benefit for Type 1.5’s? 

 

                Lantus - When I first was put on Lantus (as a Type 2), I was told to increase by 2 units every three days if I didn’t see my fasting down below 110.  Now I’m told to decrease my Lantus any day I go below 70.  My new fasting target is below 140. 

 

                No bolus & up my carbs – given an A1C under 7%, I’ve been told to just stay on the basal.   I’ve also been told to eat 50 grams of carbs with every meal, 15 grams for snacks, for a total of 150 to 200 a day.  Is this typical for a Type 1.5?  Seems strange after two years of under 50 grams a day. But the idea is that now that I’m on long acting insulin, I have to eat carbs so I won’t go low?

 

                Weight gain – up 10 pounds since being on insulin.  I feel like I’m cheating more now, but I’ve noticed I crave carbs more.  Will it level out or do you gain weight as you increase your insulin? Or was I losing all the weight because I was an undiagnosed Type 1?

 

Anyhow, I need to learn about being a Type 1.5 and how this new diagnosis will change how I manage my diabetes.  Love to learn!

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GAgirl

I don;t know anything about T 1.5 so all I want to do is congratulate you on sticking to your guns and making them do this testing for you!

post-55074-139628788222_thumb.jpg

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Lady Imp

After trying every suggestion here from the Type 2’s and feeling defeated that I just couldn’t get my A1C under control (of course, my fault, must be doing something wrong!), I asked my primary to test me for GAD and C-Peptide. 

 

Humoring me, he ordered the tests. When they came back way out of range, he decided I needed to go see the Diabetes Group up at Yale.

 

Yup, I’m a Type 1.5 or Type 1 as the doctors at Yale confirm.  Just thought I’d share with you all because if people on this forum hadn’t suggested that I be tested for Type 1, I doubt I would have been.

               

Yale is great but they still use the standards set forth by the ADA.  They think I have great control because my A1C’s are coming down.  I know that’ a function of the Lantus making me go low in the late morning and the fact that I really limit carbs. I still spike to over 200 if I eat more than 20 grams.

 

Any opinions on the following?

 

                Metformin – I have been told to try decreasing the Met by half for a week and then stop taking it.  I’ve read so many recent articles suggesting Met may be of some benefit for Type 1.5’s? 

 

                Lantus - When I first was put on Lantus (as a Type 2), I was told to increase by 2 units every three days if I didn’t see my fasting down below 110.  Now I’m told to decrease my Lantus any day I go below 70.  My new fasting target is below 140. 

 

                No bolus & up my carbs – given an A1C under 7%, I’ve been told to just stay on the basal.   I’ve also been told to eat 50 grams of carbs with every meal, 15 grams for snacks, for a total of 150 to 200 a day.  Is this typical for a Type 1.5?  Seems strange after two years of under 50 grams a day. But the idea is that now that I’m on long acting insulin, I have to eat carbs so I won’t go low?

 

                Weight gain – up 10 pounds since being on insulin.  I feel like I’m cheating more now, but I’ve noticed I crave carbs more.  Will it level out or do you gain weight as you increase your insulin? Or was I losing all the weight because I was an undiagnosed Type 1?

 

Anyhow, I need to learn about being a Type 1.5 and how this new diagnosis will change how I manage my diabetes.  Love to learn!

First off, good to hear that you finally got a correct diagnosis. You'll start feeling a lot better. :)

 

As for the diet recommendations though...to be honest, you're going to be in for more experimentation now that they've got you on insulin. Yes, the carb recommendations are typical from a doctor...but I honestly wouldn't recommend it. You will find much better control if you continue to limit your carb intake. Type 1s have a little more free reign in their diets, but you still don't have a free pass, and especially not with a Type 1.5 diagnosis...and their recommendations to me sound like a free pass. If you are able to keep control of your BGs eating that many carbs, then by all means go for it. If you feel more comfortable maintaining the 50g per day you've been eating the past two years, again, go for it. One thing I will not recommend doing though is waking up tomorrow and saying "you know what, I'm going to have a 200g carb day!" and eating everything in the kitchen, especially since you're not on a bolus insulin. If you're going to increase, do it gradually, and test test test. Food is going to affect you slightly differently now.

 

The point of long-acting insulin (specifically the kind that you're on) is to keep your basal blood sugars normal. A normally-functioning pancreas will shoot out little bits of insulin here and there when you're not eating to keep your BGs in line. A Type 1 doesn't have this capability anymore since the pancreas doesn't produce any insulin, but since you're a Type 1.5 there's a good chance your body is still making a little. This may be why they've advised you upping your carb intake. I am of the opinion, however, that if your BGs are dropping low on your basal insulin that the dosage needs adjusting, not your food intake. I find your recommended fasting BG to be high though, and I wonder if they're telling you that because they're being conservative and not trying to push you to the point where you're crashing all the time. Once you get used to the med and lifestyle change, if you feel comfortable shooting for a lower BG then by all means, do it. My endo wants my target range to be 100-120...I have my pump set to 90-100 because that's where I want it and it seems to be a good number so that I'm not too high, nor going too low. I've been doing this for long enough that I am confident in my management techniques, and you will eventually find yourself to that point as well, and you'll leave the doctor's office going "nope!" and tweaking however you want like I will occasionally find myself doing (I once went back to my car going "what on earth is she smoking?? My BGs were completely fine!!" and changed pump settings back to where I had them). :)

 

In reality, not too much is going to change for you. If I were you, I would keep the diet you've been eating. You're just going to have the added fun of lifetime insulin tweaking. The biggest piece of advice I can give you is to get comfortable making adjustments on your own. You're going to have to pay closer attention to BG numbers now that you've got insulin adjustments to worry about, and you're going to have to keep an eye out for the inevitable time when you will have to add that bolus insulin. Good luck!

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GrammaBear

After trying every suggestion here from the Type 2’s and feeling defeated that I just couldn’t get my A1C under control (of course, my fault, must be doing something wrong!), I asked my primary to test me for GAD and C-Peptide. 

 

Humoring me, he ordered the tests. When they came back way out of range, he decided I needed to go see the Diabetes Group up at Yale.

 

Yup, I’m a Type 1.5 or Type 1 as the doctors at Yale confirm.  Just thought I’d share with you all because if people on this forum hadn’t suggested that I be tested for Type 1, I doubt I would have been.

               

Yale is great but they still use the standards set forth by the ADA.  They think I have great control because my A1C’s are coming down.  I know that’ a function of the Lantus making me go low in the late morning and the fact that I really limit carbs. I still spike to over 200 if I eat more than 20 grams.

 

Any opinions on the following?

 

                Metformin – I have been told to try decreasing the Met by half for a week and then stop taking it.  I’ve read so many recent articles suggesting Met may be of some benefit for Type 1.5’s? 

 

                Lantus - When I first was put on Lantus (as a Type 2), I was told to increase by 2 units every three days if I didn’t see my fasting down below 110.  Now I’m told to decrease my Lantus any day I go below 70.  My new fasting target is below 140. 

 

                No bolus & up my carbs – given an A1C under 7%, I’ve been told to just stay on the basal.   I’ve also been told to eat 50 grams of carbs with every meal, 15 grams for snacks, for a total of 150 to 200 a day.  Is this typical for a Type 1.5?  Seems strange after two years of under 50 grams a day. But the idea is that now that I’m on long acting insulin, I have to eat carbs so I won’t go low?

 

                Weight gain – up 10 pounds since being on insulin.  I feel like I’m cheating more now, but I’ve noticed I crave carbs more.  Will it level out or do you gain weight as you increase your insulin? Or was I losing all the weight because I was an undiagnosed Type 1?

 

Anyhow, I need to learn about being a Type 1.5 and how this new diagnosis will change how I manage my diabetes.  Love to learn!

 

Kudos to you for insisting that your Doctor do the tests that ultimately discovered what type of diabetes you have.  I am not a health care professional so I can only share what works for me.  When I was first put on insulin I was given the same advice about carb consumption as you were.  The advice I received was 45-60 carbs per meal and two snacks of 15-30 carbs per snack.  It took me a while to realize that the advice I received was 'bogus'.  All those carbs caused me to gain weight as did the extra insulin to cover those carbs.

 

I am not a super low carber, but I do think that each of us has to find what works for us.  You sound like you have plenty of common sense and realize that the advice you were given just might not be working for you.  If you haven't already read the book "Using Insulin" by John Walsh - I would recommend that book.  It explains a lot of the 'adjustment' process that insulin requires.

 

 

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pat593

Thanks all.  I doubt I will up my carbs by much - I'm fine with the low carb plan and love all the recipes here. I do think the carbs make me gain weight but I am hopeful I can keep it under control.

 

Just finished Think like a Pancreas and will attempt to absorb Using Insulin as well - next on my must read list.

 

I think my high fasting is still a result of DP. I still wake up at 3 am drenched.  I wake high and then go low as the morning progresses.  I will keep testing and adjusting and asking you all for advice.

 

Thanks

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Hooterville

Wow, Pat, amazing.  Good job being your own advocate.

 

IMO, metformin would only be of benefit if you were insulin resistant.  

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Uff Da

Glad to hear you finally have a correct diagnosis.  I, too, was treated as a type 2 by my primary for a year and a half before she finally referred me to an endo, where I got a correct diagnosis and was put on insulin.  He gave me samples of both Lantus and a mealtime insulin and a starting I:C ratio, though.  So even though when he called a week later with the results of the antibody tests and we decided in the phone conversation that I could try staying on just the Lantus for a while, I had his prescription for the Novolog to proceed when I was ready. 

 

Again, about weight gain we are a bit different.  I was so bloomin' skinny at that point that I was scared to death to give myself four injections a day!  I just didn't have any territory in which to rotate the injections.  But after watching my BG after meals hit well over 200, I finally decided after five weeks that I just had to add the mealtime insulin. 

 

My endo started me on 8 units of Lantus a day.  But since that was enough to partially cover meals, too, it meant that I'd go low if I didn't get up and eat during the night.  That may be the case for you, too.  As soon as I decided to add the mealtime insulin, I reduced the basal, and my tests showed that 6 units kept me almost dead level through the night.

 

I dropped the Metformin, but part of my reason for doing so is that it has a mild appetite suppressant effect.  And I was trying like crazy to gain some weight.  (I was down to 105 at my lowest.)  Now that I'm up to my ideal weight again, I'm giving a little thought to the possibility of adding it back, as I seem to be getting more insulin resistant and I might be able to reduce my insulin dose a bit if I did take met.  But my endo had no problem with my having dropped it on my own, since I have good control without it.

 

When you say you wake at 3 am drenched, that makes me wonder if you went low enough in the night to cause a rebound high.  I think you need to do a basal test.  (Full description in the book Using Insulin.)  I know some people get rebounds - Tanikit is one.  I've never had one and from what I've read, that may be due to my age.  But then, you are still "just a kid" in comparison.   :)   So it possible that your liver would try to save you.

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pat593

Thanks Uff Da - so nice to hear I'm not alone in being a "Type 1.5."  From what I've read and, more importantly, from what I see from my own testing, I'm surprised I wasn't put on a bolus.  I take 20 or 22 units of Lantus every night and just don't seem to have any consistent results.  At 22 units, I wake up between 80 and 110 but go low too quickly in the morning and when I take 20 units, my fasting can be as high as 165!  I do think I should try splitting the dosage since I think it makes me go too low at night and then I'm high again in the morning due to DP.  I will start testing at night to see any patterns. 

 

I'm not too worried yet about the weight gain.  118 was a little too bony for my taste - I'm Italian! - but I'd like to stay where I am now.  I feel good and I think the extra weight gives me a little more strength.  I still have a poor appetite and am a little nervous about what will happen when I stop the Met.  I'd really like to know if there is any downside to stopping it - I feel it's helping since I've noticed slightly higher readings since I've halved the dose.  But it is hard to separate out what factor is causing a change in blood sugar readings, could be stress, slightly more carbs to cover lows (I tend to over correct) so I will see what happens without it before deciding.

 

Everyone is a sample of one in this game but it is so helpful to hear about different plans of attack.  I go back up to Yale in a couple of weeks so I hope to have a plan to present to the endo.  Keep posting and thanks. 

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Uff Da

One thing you might want to try to prevent overcorrecting those lows is to test just one glucose tab some time when you near the low end of normal, then test your BG 30, 45 and 60 minutes later to see exactly how much your BG is increased.  Calculate how many points per gram carb.  That way you'll know just how sensitive you are to carbs and can better make a decision for what to take when you have a low.  I'm so sensitive to carbs, 8-10 points BG increase per gram of carb, that I quickly made the decision to take just ONE tab for a low, unless I'm lower than 40!  And for a mild low, I sometimes only take half a tab.  I only see it as necessary to bring myself up to 70 with quick carbs.  Then when back to normal and thinking more clearly, I decide based upon circumstances whether or not to eat anything more.  But at that point I'd make it regular food.  The usual recommendation of "eat 15 to 20 grams of carb for a low" would send my BG near or over 200 almost every time!

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pat593

OK - need some opinions.  I must say, I am pretty amazed at the consistency of my one week random sample of counting carbs to blood sugar ratio and how quickly I drop from my morning highs.

 

Most mornings I still have absolutely no appetite but do try to nibble on something no carb, usually a scrambled egg or piece of cheese. 

 

I really can't eat carbs - seems to me if I eat the recommended ADA level of carbs, I will need more insulin. 

 

I know there are a lot of options - I want to stay on low carb and work a little harder on managing my Lantus. 

 

Sooooo - what would you do or have tried or suggest I ask my endo???  My instructions are to adjust my Lantus based on daily lows not on fasting. 

 

Also - I'm I looking at this the right way? 

 

 

 

Week of April 7th, 2014

 

Mon                       Fasting 117

 

                              After Lunch of 50 grams of carbs – 270

                                               One carb raises blood sugar 3 points

 

Tues                      Fasting 155 at 6 am, 133 two hours later, 106 four hours later  

                                                Drop about 12 points an hour

 

                              Before Bed, after snack, 137

                                                Injected 20 units of Lantus

 

Wed                       Fasting 130 at 6 am, 95 3 hours later

                                              Drop about 12 points an hour

 

                              After Lunch of under 20 carbs – 151

                                                One carb raises blood sugar 3 points

 

Thurs                     Fasting 151 at 6 am, 118 3 hours later, 91 five hours later

                      Drop about 12 points an hour

 

                  After Dinner, only carbs from greens, no bedtime snack - 136

                      Injected 21 units of Lantus

                      First day with no Metformin

 

Fri                          Fasting 59 at 6 am, ate a clementine to correct, 87 at 6:15 am

                                                One carb raises blood sugar 3 points

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Tribbles

Rising 3 points per gram is about right (there's a range and that's squarely in it).

 

You can stay on Metformin. My endo has always had his T1s on metformin because it lowers the amount of insulin they need by reducing the liver output as you have seen. The less insulin you take the less scope there is to get ot wrong. The theory used to be that you didn't want T1s on metformin because of the risk of lactic acidosis, his point was that he had been doing this for years and never seen a case. It's pretty much settle fact now that metformin doesn't cause lactic acidosis except iunder certain very clearly defined (and rare) situations.

 

If you are going low at lunch time you are probably taking to much basal. Your basal should hold you steady. Personally I have the same issue, I deal with it by having a coffee mid-morning with a couple of teaspoons of sugar - that gives the insulin some carbs to play with and holds off the low. I could reduce my basal (and probably should) but that causes my DP numbers to rise.

 

From memory your body is at it's slowest around 3AM so that's when you are most likely to go low. I use a CGM so I can look at the curve and see the dip. It recovers from that point onwards.

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stinastina

Pat, thanks for sharing your experience. What was happening that made you decide to ask for those tests ? 

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pat593

I intially responded well to the traditional Type 2 treatment - lost weight, ate HF/LC and took Met.  But after a very short honeymoon period, my A1C started to climb and I was exhausted all the time.  From everything I read, I should have been able to tolerate a few carbs now and then and when I read up on Type 1.5, it all made sense.  My body needed insulin. 

 

I wake up at 3 am but feel fine although still do get night sweats.  While I certainly see the benefit in a CGM, how do you use the data to manage the 3 am dip if you are only taking a basal? 

 

I did try upping my carbs this morning - a few slices of apple with some cream cheese - and I was only 94 after/before lunch - so I think your advice about having a few carbs before lunch will help prevent my late morning lows.  I figure if I keep it under 10 carbs, I'l be OK. I don't want to reduce my basal too much since my fasting numbers are still running high. 

 

So - either I reduce my basal and have a higher fasting but fewer lows or I manage my basal for my fasting and try to nibble on a few carbs here and there throughout the morning!  Gotta tell you - those apple slices were good! 

 

Thanks for confirming that my estimates of 3 bs rise for every gram of carb is within range - the stuff you have to figure out on your own.  I shutter to think what would be happening to my bs if I was following my recommended diet of 50 carbs per meal and 15 per snack.

 

I do think my sugars are worse without the Met but since I know it takes awhile to build up the Met in your system, I'm sure I still have some working.  I figure I'll have a better idea after a week or so when it is all out of my system.  I want to stay on it and will talk to my endo about it as soon as I have more data.

 

Thanks - so many variables! 

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Lady Imp

I intially responded well to the traditional Type 2 treatment - lost weight, ate HF/LC and took Met.  But after a very short honeymoon period, my A1C started to climb and I was exhausted all the time.  From everything I read, I should have been able to tolerate a few carbs now and then and when I read up on Type 1.5, it all made sense.  My body needed insulin. 

 

I wake up at 3 am but feel fine although still do get night sweats.  While I certainly see the benefit in a CGM, how do you use the data to manage the 3 am dip if you are only taking a basal? 

 

I did try upping my carbs this morning - a few slices of apple with some cream cheese - and I was only 94 after/before lunch - so I think your advice about having a few carbs before lunch will help prevent my late morning lows.  I figure if I keep it under 10 carbs, I'l be OK. I don't want to reduce my basal too much since my fasting numbers are still running high. 

 

So - either I reduce my basal and have a higher fasting but fewer lows or I manage my basal for my fasting and try to nibble on a few carbs here and there throughout the morning!  Gotta tell you - those apple slices were good! 

 

When I was on Levemir, I was able to prevent that overnight low and subsequent FBGs in the 250s by eating a snack before bed. I've heard that jerky works well. I was always all right with eating a hot dog and chips at around midnight and just bolusing for the meal (this was prior to reducing my carb intake, although I honestly never went truly low-carb...I was also pregnant at the time and EXTREMELY sensitive to insulin in the first trimester)...managed to keep myself from crashing in the overnight, and I would wake up with much better FBGs. I would recommend maybe a handful of nuts or celery sticks with nut butter (and maybe a raisin or two if you're ok with the extra carbs), just a little something to give the Lantus something to work on in the overnight.

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Tribbles

I wake up at 3 am but feel fine although still do get night sweats.  While I certainly see the benefit in a CGM, how do you use the data to manage the 3 am dip if you are only taking a basal?

There is only so much you can do. The CGM is useful to see what your levels look like through the night. The other thing is how much you drop so you can decide if you are high enough before you go to sleep.

 

For me the biggest thing the CGM gives me is whether I am rising or falling and how fast. The problem with a meter is that it just gives you a point so I know I am 120 but do I want to add an extra unit to the bolus to correct that? Usually the answer would be yes but if the CGM shows that I am on a down trend then the answer would be no because if I do I am probably going to be low later. Likewise if I am rising I may want to add an extra unit to the correction.

 

The final thing is that the CGM catches my lows before they become a problem which lets me correct more aggressively, especially at night, because that safety net is there.

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algarve7

I suddenly ended up with high blood sugars in the months just after removing 4 old mercury amalgam fillings in the space of 2 months. I'd done some regular blood tests in the months before having dental treatment and everything was very good. My fasting blood sugars were 94 mg/dl, and after they were at 126 mg/dl and were climbing each month to 141 mg/dl until I started to get some control with a high fat, low carb diet. I happened to check anti-GAD antibodies and found I had 358 U/ml (reference range < 1.5 U/ml) after the dental work.

 

Do you have any ideas about what caused the development of LADA (type 1.5)?

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pat593

Funny, a friend just told me she heard that they are rethinking root canals.  The idea is that drilling really can't get out every spec of bacteria and maybe bacteria sealed in a root canal is responsible for auto immune diseases down the road - cancer included.  Maybe you just need to flush out any bacteria that may have been stuck behind fillings - strange, huh?

 

My blood sugars went crazy after I recently had surgery to remove a cancerous growth on my shin.  Cooincidence?

 

I believe my LAPD can be linked to many things in my medical past - genetics, cancer, being thrust into early menopause from the chemo.  There are so many medical reports linking high sugars and a myriad of conditions - I've read about links between diabetes and my severe psorasis and RA.  

 

Just too many variables to know why I developed LAPD versus Type 2.  My CNP is also considering MODY - I'll find out what the endo says but that appointment is months away! 

 

Anyone out there have an idea of why one person develops LAPD in middle age versus Type 2?

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algarve7

I believe my LAPD can be linked to many things in my medical past - genetics, cancer, being thrust into early menopause from the chemo.

What's LAPD? Los Angeles Police Department? ;) Do you mean LADA (Latent autoimmune diabetes of adults)? Type 1.5, LADA, MODY...  the title doesn't matter so much. What's important is that we know it's autoimmune or not, and ideally look for the primary cause or trigger, and how to prevent or treat it.

 

Did you have chemotherapy? Chemotherapy drugs can destroy beta cells and cause diabetes. For example, common animal models for type 1 diabetes use a chemical called Streptozotocin, which works in a similar way to common chemotherapy drugs. Streptozotocin was originally identified in the late 1950s as an antibiotic.

 

Common chemotherapy drugs such as actinomycin, bleomycin, plicamycin, and mitomycin are also used as antibiotics. Notice they end in -mycin / -cin, a commonly used suffix for antibiotics.

 

Anyone out there have an idea of why one person develops LAPD in middle age versus Type 2?

Type 2 is a completely different disease. It's caused by lifestyle, in particular, I believe, a high carbohydrate diet. Type 1 and type 1.5 is autoimmune diabetes, where something, maybe bacterial related trigger or a chemical agent caused the destruction of pancreatic beta cells. Maybe after the destruction of beta cells, it's possible that the immune system picks that up and continues the destruction (i.e., the danger model theory of immunology proposed by Dr Polly Matzinger). For autoimmune diabetes, I think we need to be genetically susceptible in the first place, such as having immune deficiency. In my case, I have IgA and IgM deficiency. That makes me more susceptible to bacteria and virus infections in the lungs in particular. I recommend checking your total immunoglobulins for IgG, IgA and IgM. Apart from the possibility of IgA deficiency, you may find IgG elevated. If what you are doing calms down the immune disfunction, then this will decrease, but maybe not enough, unless what we do is very effective.

 

Surgery is very traumatic for the patient, in that it's very demanding on the immune system and infections are a significant risk. If you have some kind of immune deficiency, it's possible that surgery might be too much for those people and the infections trigger onset of diabetes symptoms.

 

It's not difficult to find evidence in the reseach on amalgam and autoimmune disease (as one example of a trigger):

 

Adverse immunological effects and autoimmunity induced by dental amalgam and alloy in mice.

http://www.fasebj.org/content/8/14/1183.short

 

Dental amalgam as one of the risk factors in autoimmune diseases

http://www.nel.edu/pdf_w/24_12/NEL241203A09_Bartova--Sterzl_wr.pdf

 

The beneficial effect of amalgam replacement on health in patients with autoimmunity

http://www.nel.edu/pdf_/25_3/NEL250304A07_Prochazkova_.pdf

 

 

There are so many medical reports linking high sugars and a myriad of conditions - I've read about links between diabetes and my severe psorasis and RA.

Keep in mind that diabetes is primarily a group of symptoms which have causes. Of course the individual symptoms themselves, such as high blood sugars, will lead to new symptoms. For example, high blood sugars causes wounds to heal more slowly and rashes to appear in some regions of the body as bacteria feed off the higher concentration of sugars in the sweat. In the case of Rheumatoid arthritis, the primary cause might not be the elevated blood sugars, although it will probably make the disease worse.

 

.

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algarve7

From what I've read and, more importantly, from what I see from my own testing, I'm surprised I wasn't put on a bolus.  I take 20 or 22 units of Lantus every night and just don't seem to have any consistent results.  At 22 units, I wake up between 80 and 110 but go low too quickly in the morning and when I take 20 units, my fasting can be as high as 165!  I do think I should try splitting the dosage since I think it makes me go too low at night and then I'm high again in the morning due to DP.  I will start testing at night to see any patterns.

I would start using a bolus insulin to cover your meals. Basal isn't effective at keeping your blood sugars under good control. I was doing exactly the same as you, and it wasn't working. You end up having to take a lot of Basal to try to keep some kinds of control.

 

The nondiabetic ordinarily maintains blood sugar immaculately within a narrow range-usually between 70 and 95 mg/dl (milligrams per deciliter), with most people hovering near 83 mg/dl. Some literature on diabetes, "normal" may be defined as 60-120 mg/dl, or even as high as 140 mg/dl. This "normal" is entirely relative. No nondiabetic will have blood sugar levels as high as 140 mg/dl except after consuming a lot of carbohydrate.

 

If you're on a low carb high fat diet, then the amount of insulin is probably only going to be at the low end, around 0.5 units/kg body weight daily. But this will depend on the amount and type of food you eat.

 

I would avoid any Bolus insulin that contains Protamine. It's rather unstable in the body.

 

Here's what Dr. Bernstein says about Protamine in Diabetes Solution:

 

The cloudiness is caused by an additive that combines with the insulin to form particles that slowly dissolve under the skin. The one remaining intermediate-acting insulin, called NPH, is modified with an animal protein called protamine. Insulins that contain protamine may stimulate the immune system to make antibodies to insulin. These antibodies can temporarily bind to some of the insulin, rendering it inactive. Then, unpredictably, they can release the insulin at a time when it's not necessarily needed.

This unpredictable behaviour is exactly what I was experiencing with Novolin 30R insulin. Once I switched to Novolog/Novorapid (Insulin Aspart) rapid insulin things really improved. Now I'm trying Humulin R regular rapid insulin which is biosynthetic but idential to human insulin. It has a much longer action than the analog, which might be better suited to a low carb high fat diet. I still sometimes use Novolog rapid when I want to lower BG quickly or want to take insulin just before eating. For Basal I'm using Levemir (Insulin Detemir). I don't recommend Lantus because it activates the IGF-1 (insulin-like growth factor 1) receptor and is linked to slight increases in cancer in a number of human studies.

 

Also, according to Dr. Bernstein Lantus (glargine) insulin may lose a significant amount of potency 30 days after you remove the first dose, even if it's stored in the refrigerator. Levemir (detemir) insulin also has a limited shelf life, about twice that of Lantus.

 

Here's what Dr. Bernstein says about Lantus in Diabetes Solution:

 

Some years ago, an internationally renowned diabetologist, Dr. Ernst Chantelau, pointed out the scientific likelihood that Lantus could cause a higher incidence of cancer than other insulins. The evidence lay in the high affinity of Lantus for the growth hormone (IGF-1) receptors on the surface of cancer cells. After receiving a confirmatory scientific study from Germany, the European Association for the Study of Diabetes contracted with investigators in Sweden, Scotland, and the UK to review the excellent records of insulin use and cancer occurrence kept by these nations. All but the UK study supported the German results. Why use an insulin that has even a very small risk of promoting cancer when an equally good and less costly one already exists?

.

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pat593

So many things to consider.  Thanks so much for the help. I do think I will be put on a bolus - I eat pretty much no carb all day and hover around 100 but go over 200 after dinner - sometimes after eating something like 20 carb grams of cauliflower!!! 

 

BTW - What's LAPD? Los Angeles Police Department? ;) Do you mean LADA (Latent autoimmune diabetes of adults)?

 

Yet another example of how I get to blame everything on Chemo brain (even 12 years out) -- and you guys thought brain fog from a low was bad!

 

When you guys talk about covering your meals with a bolus - how do you cover a no/very low carb meal?  For example, tonight I had prime rib with green beans.  Would you still bolus to cover the carbs in the green beans? I tested 158 after the meal! My CNP is OK with that - she's happy if I stay under 180 but I like to shoot for under 120 -- no pun intended!

 

I hadn't heard about the cancer link with Lantus - it will really make me rethink it now.  I also want to stay on Met for that reason - if it does no harm and can help reduce the risk of cancer, I don't see any downside to staying on it. 

 

I've been off Met for about a week now and have been seeing higher evening readings. 

Could also be because I take my Lantus before bed and it may be wearing off by dinner time. Another reason to try splitting my Lantus doses to twice a day. 

 

Or it could be that the Lantus I was using was not good - had a couple of days over 200 fasting - back to normal when I grabbed a new pen.  

 

 

Thanks for education!

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Uff Da

When you guys talk about covering your meals with a bolus - how do you cover a no/very low carb meal?  For example, tonight I had prime rib with green beans.  Would you still bolus to cover the carbs in the green beans? I tested 158 after the meal! My CNP is OK with that - she's happy if I stay under 180 but I like to shoot for under 120 -- no pun intended!

 

I usually eat enough carbs in each meal that I don't usually worry about having to bolus for protein.  But I took an online Coursera course on diabetes last fall and I believe the lecturer stated that for high protein, low carb meals one would count all the carbs, then for the protein count half the grams of protein over five grams as though they were carbs.  So if you had a meal with 10 grams carb and 55 grams protein, you'd bolus as though you were eating 35 grams carb.  Of course, as most things with diabetes, this is another YMMV, and those figures (assuming I'm remembering correctly from the course) need to be tested for the individual.

 

I failed to download the lecture with that information on it, so I hope I'm remembering correctly.  Tanikit also took the course and if she chimes in here could either confirm the above starting guidelines or correct me if I'm wrong.

 

I did eat one low carb, high protein meal and since I normally bolus only for carbs, discovered that my BG ended up too high.  When re-calculating my bolus with the above guidelines, I discovered that the formula given would have worked out pretty close to right.  But one would have to test it with far more than one meal before deciding if it was going to work for one's own circumstances.  I think the big question is to decide at what level of carbs one needs to make the switch between counting carbs only or counting both carbs and protein.

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Tanikit

Protein bolusing is a very complicated issue - even those guidelines do not always work for me. Also with high protein meals it will depend a large amount on how much fat was in the meal as this can slow the absorption. Yes, you should definitely still be bolusing for the carbs in beans and in all vegetables - sometimes there are enough carbs to offset the effect of the protein.

 

I think it also depends on a number of other things - like whether you are eating so few carbs that you land up slightly ketotic - then your body is much more likely to use the protein and convert it to glucose. Again protein is more slowly digested than carbohydrates and its digestion speed (including the speed at which it is converted to glucose) is more variable than for carbihydrates.

 

I struggle a lot with braais (barbeques) where I eat a lot of meat - the last time I tested through the night and the sugars peaked 6 hours post eating - which is 2 hours after any bolus would have stopped working. You can therefore inject the insulin at the time of the meal and then again about 3-4 hours later - similar to what you can do with a pump using a multi wave bolus.

 

All this you have to figure out for yourself and your own body by continually testing and trying a few things.

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algarve7

Yet another example of how I get to blame everything on Chemo brain (even 12 years out) -- and you guys thought brain fog from a low was bad!

Sorry to hear that. It must be hard living with the after effects from chemotherapy.

 

 

When you guys talk about covering your meals with a bolus - how do you cover a no/very low carb meal? For example, tonight I had prime rib with green beans. Would you still bolus to cover the carbs in the green beans? I tested 158 after the meal! My CNP is OK with that - she's happy if I stay under 180 but I like to shoot for under 120 -- no pun intended!

You would bolus for the carbs and the protein.

 

Dietary sources of blood sugar are carbohydrates and proteins. The body cannot convert fat into sugar.

 

Dietary protein gives us a much slower and smaller blood sugar effect, but you still need to bolus for this protein.

 

It takes longer for protein to digest, so the longer duration of regular human insulin might be better than the shorter duration analogs.

 

Dr Bernstein recommends splitting any doses of insulin over 7 units into 2 or more doses injected in the same region.

 

 

Personally I prefer not to be on medication, but metformin is one of the better ones. One of the mechanisms of metformin is that it reduces IGF-1. Intermittent fasting/high fat diet will do this also. It's a good idea to have IGF-1 blood level measured to see if your lifestyle leads to higher levels of IGF-1. Even within "normal" range, lower levels will be better to reduce cancer risk. IGF-1 tends to promote cancer growth.

 

- Increased cancer-related mortality for patients with type 2 diabetes who use sulfonylureas or insulin

- Metformin and reduced risk of cancer in diabetic patients

 

Recent clinical studies have revealed that metformin treatment has been associated with

reduced cancer risk. In a study of more than 10,000 diabetic patients being treated with

metformin or other sulfonylureas, those that were treated with sulfonylureas had an increased

risk of cancer-related mortality when compared to those patients on metformin [7]. In a second

study using a smaller cohort, it was observed that patients treated with metformin had a lower

incidence of cancer when compared to patients on other treatments

 

7. Bowker SL, Majumdar SR, Veugelers P, Johnson JA. Increased cancer-related mortality for patients

with type 2 diabetes who use sulfonylureas or insulin. Diabetes Care 2006;29:254–258. [PubMed:

16443869]

 

8. Evans JM, Donnelly LA, Emslie-Smith AM, Alessi DR, Morris AD. Metformin and reduced risk of

cancer in diabetic patients. Bmj 2005;330:1304–1305. [PubMed: 15849206]

.

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algarve7

I usually eat enough carbs in each meal that I don't usually worry about having to bolus for protein. But I took an online Coursera course on diabetes last fall and I believe the lecturer stated that for high protein, low carb meals one would count all the carbs, then for the protein count half the grams of protein over five grams as though they were carbs. So if you had a meal with 10 grams carb and 55 grams protein, you'd bolus as though you were eating 35 grams carb. Of course, as most things with diabetes, this is another YMMV, and those figures (assuming I'm remembering correctly from the course) need to be tested for the individual.

 

I failed to download the lecture with that information on it, so I hope I'm remembering correctly. Tanikit also took the course and if she chimes in here could either confirm the above starting guidelines or correct me if I'm wrong.

 

I did eat one low carb, high protein meal and since I normally bolus only for carbs, discovered that my BG ended up too high. When re-calculating my bolus with the above guidelines, I discovered that the formula given would have worked out pretty close to right. But one would have to test it with far more than one meal before deciding if it was going to work for one's own circumstances. I think the big question is to decide at what level of carbs one needs to make the switch between counting carbs only or counting both carbs and protein.

 

A basic rule like this for protein seems like a good way to estimate the amount of units to use.

 

 

Protein bolusing is a very complicated issue - even those guidelines do not always work for me. Also with high protein meals it will depend a large amount on how much fat was in the meal as this can slow the absorption. Yes, you should definitely still be bolusing for the carbs in beans and in all vegetables - sometimes there are enough carbs to offset the effect of the protein.

 

I think it also depends on a number of other things - like whether you are eating so few carbs that you land up slightly ketotic - then your body is much more likely to use the protein and convert it to glucose. Again protein is more slowly digested than carbohydrates and its digestion speed (including the speed at which it is converted to glucose) is more variable than for carbihydrates.

 

I struggle a lot with braais (barbeques) where I eat a lot of meat - the last time I tested through the night and the sugars peaked 6 hours post eating - which is 2 hours after any bolus would have stopped working. You can therefore inject the insulin at the time of the meal and then again about 3-4 hours later - similar to what you can do with a pump using a multi wave bolus.

 

All this you have to figure out for yourself and your own body by continually testing and trying a few things.

 

I normally eat meals mostly of protein (i.e., meat, which contains all the normal amount of fat too). When I used Novolog/Novorapid, I'd bolus for the meal with say about 4 units and then about 1.5 hours later another 3 or 4 units, depending on the quantity of food. I was thinking this would work better to bolus for protein because it takes longer to digest and breakdown into blood glucose. I'm not sure if this was a good way or not.

 

Recently I'm trying to use Humulin regular insulin which has a much longer duration of action (about 5 hours) than the Novolog/Novorapid to cover the same sort of meals.

 

With Humulin regular insulin we are supposed to bolus about 40-45 min before the meal, but if the meal doesn't really contain any carbohydrates, I wonder if we can bolus when we start eating, to cover the whole protein/fat meal?

 

In Diabetes Solution, Dr Bernstein writes:

By sheer coincidence, the 5-hour (assumed) action time of regular [human insulin] corresponds approximately to the time most of us require to digest fully a mixed meal of protein and carbohydrate, and to experience the final effect of the meal upon blood sugars.

 

Regular insulin should usually be injected 45 minutes before a meal, so that it starts to work just as we start to eat. This timing may vary from one meal to another or for different individuals.

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pat593

Ahhhhh. So much to consider and I will consider it all so Thanks.

 

Went up to Yale yesterday to meet once again with the CNP.  She doesn't want to see me again - I don't want to see her again.

 

Three times during our visit she chastised me with the quote - "We at Yale abide by the guidelines set forth by the ADA" - when I asked her about what I might try. 

 

The first time was when I asked her about any downside to being on Met as a Type 1 (Yale does not seem to like the term 1.5).  I've been off the Met for 3 weeks and have seen a gradual increase in my sugar readings.  I don't know if this is caused by the Met but if Met does no harm, why not stay on it?  The CPN sternly told me that Met has no benefit for a Type 1 and is NEVER prescribed for a Type 1.  The ADA does not recommend Met for Type 1.  Really? All those articles I read, my nephew who is 10 and Type 1 was just put on it, ???

 

The second stern order from her was of course, my carb intake.  She basically told me that if I didn't listen to her and eat 45 carbs per meal, 15 per snack, not to come back.  I asked her if a reduction in carbs would help me keep my insulin requirements lower and she yelled at me that I do not know better than the ADA, "We at Yale abide by the guidelines set forth by the ADA" and stressed the need for a balanced diet with fruits and grains.  She thinks my before meal numbers are fine and I can easily add a lot more carbs to stay under 180 post meal.  Do Type 1's have a much higher range than Type 2's?  I feel best when I start a meal around 100 and two hours later I'm no higher than 120.  I swear I get "heavy legs" when I'm high and she pooh poohed the fact that I feel bad with higher blood sugar levels.

 

Next she laughed at my suggestion that my very high (over 250) before bed numbers might be driven by the Lantus wearing off - maybe having only a 20 or 22 hour life. I asked if maybe a simple solution would be to spit the Lantus dose to twice a day. She implied that I was probably not correctly counting carbs (think I got that!!) and I'd better stop reading so much.   She smirked when I told her I was reading How to Think like a Pancreas  (which is quickly becoming my first go to) and thought I might need a bolus added to my regime.  She also roared when I asked her if maybe my pen was losing its efficacy after two weeks - twice I threw out the pen after getting high fastings and the new pen got me back to good readings.

 

I got yelled for not testing every night - my life is crazy so I tested as much as I could and believe I gave her a very good random sample to analyze.  She wouldn't look at my analysis - only commenting on the missing data points.  I suggested to her that since I mostly eat the same thing every day, patterns do evolve and I have been doing this for two years.  I know if I wake with normal fasting, what eating the same breakfast is going to do to me.

 

Anyhow, she did give me a script for Humalog with instructions to bolus if my before meal numbers are high.  She wants me to up my carbs, keep Lantus to once before bed and stay off the Met and do more testing at night to see if it is the DP (which I know I should be doing and will start). 

 

I will do as she says except for the upping of carbs.  But, I want to go back to taking 1000 Met at dinner, split my Lantus dose and see if that will help keep any evening bolus to a minimum. 

 

I wish I could find someone in the medical community who will work with me on figuring all this out.  They say to you over and over that everyone is different yet they continue to offer a one size fits all plan of attack. I've gotten yelled at for testing too much (my primary), for asking for more A1C's and GAD and C-Peptide tests, and for reading too much and trying to understand this disease! 

 

I would love to work with someone who can have a conversation with me and help me understand how to tweak a plan as I go - like you all on DF do.  It's the nuances of this disease that is so difficult.

 

Anyway, still haven't even met the endo at Yale - couldn't get an appointment till June - so I will keep reading what you kind people share - and hopefully, be able to develop a plan that works for me. 

 

Life as a Type 1.5 is different than life as a Type 2 - lots more to learn!

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