No Meds? No Insulin? Anybody out there doing Type 1.5 on diet and exercise alone like me?

Type 1 and LADA
1

OK I still can’t find a home, not on the ADA message boards and apparently not here either. I am 50 yrs old, 5’2, 115 lb woman diagnosed almost 5 years ago. I have always been this weight going on 30 years or so, except for two pregancies ( daughters now 25 and 19)
Almost 5 years ago when I had 2 bouts of pneumonia in a month, GPdid blood tests in office and fasting BG was at 357. Spent day in hospital on fluids and antibiotics, BG down to 110 and they sent me home with orders to see dietician and diabetes educator. Did that, put on too few calories and started losing weight. increased calories and allowed carbs and was doing OK except fotr the nightime crashes and waking up with BG of 52 most mornings. Off to endo, GTT and antibody testing, he says not type 2, really type 1.5 , NO meds, but also no insulin, lots of exercise to keep rest of body healthy and keep weight up with good muscle mass, since I am still making it at about 50 to 75% of normal and he thinks that we shouldn’t confuse the pancreas with outside stuff. He thinks given the level of insulin output I have 5 to 10 years to needing insulin injections

So, I have big post prandial spikes (180’s and higher) if I try to eat normal, but lower ( 130’s) if I control the carbs/ balance with protein. Fasting stays less 105 most of the time and A1c is always about 5.6 or so.

So here I am 5 years into the diagnosis, still doing the same thing: 3 meals and 2 snacks a day, bedtime snack if BG is less than 90, Total Gym 4 to 5 days a week.

Every once in awhile I think this is all a crock , I am in not that bad of shape compared to other diabetics I know and try to eat “normal” and find myself way up high and ready to crawl out of my skin from BG in the 200’s, Oh well back to the controlled intake of carbs and proteins anything is better than needles…

Biggest problem is trying to explain my diagnosis and control methods of keeping BG in check to other doctors. Had emergency surgery last fall and depite their
promise to NOT put a dextrose drip in my arm ( Had lact/ringers going into the operating room, they switched it to dextrose ( its S.O.P)
and sent me soaring up to 300’s where I stayed for about 48 hours. Chewed them out and made them send me home to keep them from killing me.

I tend to tell them Type 2/ insulin resistant because if i say Type 1 they ask me where is my insulin?

Are all you type 1.5’s on insulin? have you been this way since your diagnosis?

OK is there anybody out there like me or am I just a statistical anomaly?

2

Marie–

You sound just like me when I was first dx in 2004. I was frustrated w/ the ADA for not having US on their site but I started a discussion on that a month ago. You can search for it in the forum section. When I was first Dx I was only taking 1 .5mg of glipizide once a day. I controlled Type 1.5/LADA w/ diet, 1 pill and excerise…I had my daughter 2 years ago…After I gave birth to her I lost my prego wt and dropped back to 125. I was placed on a small dosage of thyroid meds, glipzide (2) bid and 2 500 mg of metformin…my A1c’s always in the 5’s. I know there are a few Type 1.5’s who’s Dr placed them on insulin right away and others who used oral meds when they were first DX.
I was frustrated because I was doing everything I could but my Antibodies started attacking my Pancreas…I could eat 15g of carbs and my prandail would spike to 250…I knew something was wrong and my PCP could not longer advise me so I went back to the Endo.

In January of this year my honeymoon phase ended and I was placed on insulin. Let me start by saying insulin isn’t a bad thing…don’t think that:) There are insulin pumps out there if you don’t like injecting yourself…You are not alone there are a few Type 1.5/LADA’s on this site…
Don’t give up on taking care of yourself and enjoy the honeymoon phase…

I tell people I am Type 1.5/LADA and answer questions as they come

Cherise

3

Hey Marie,

Your not doing too bad !!!, your weight is your savior, as what insulin your do make can be used and not sucked up by fat. Most of us T2’s start with low, then bounces and finally go on the needle. Diet and exercises can and will postpone the insulin injections. However it will come eventually, I am 50 too and it took ten years to finally catch up to me. We T2 are all like you, it is a progressive but manageable disease. Keep taking good care of yourself !

-Peter

4

What I don’t understand is that I don’t seem to get any worse, but I also don’t seem to get any better. I just keep doing the same thing, eating the same meals and snacks still avoiding the same things , still craving the same things, still with the same test results.

It all works pretty well until something bad a happens like an illness or infection or injury and then I have to keep explaining and explaining to keep them from making it worse with “standard operating procedure” No , please no dextrose drip, no please not the steroids for inflammation it makes my BG go and stay way up. I occasionally run into a doc who is really good like my orthopedic doc who said " OK , I would normally prescribe a week of steroids for the pinched nerve in your hand but let’s see if we can get the same results with 2 Alleve (Naproxin) everyday for 2 weeks , call me right away if you don’t have some relief within 48 hours and we’ll see what else we can do ( the Alleve worked!!!)

Or when I politely refuse a dessert or avoid the rice or accept the glass of wine, someone who is a type 1 will say “Oh just add some insulin and enjoy the dessert”, Or a type 2 will say “Should you really be drinking wine like that, doesn’t it interfere with your meds?”

“No, thank you so much for your concern. but I’ve got this under control” and they roll their eyes and you can see them thinking “Yeah, right…”

See I’m this diabetic without meds or insulin, " yeah, right…"

So’i’m just looking to see if there are any others like me out there not trying to lose weight , not trying to adjust their meds, or balance their insulin, just giving it a try with food and exercise and looking like it is going to stay this way since it HAS been this weay for 5 years now…

5

I have MODY which is the other form of Type 1.5. Your pattern doesn’t sound like the autoimmune form of Type 1.5 at all because that form usually deteriorates over 4 years. Did you have a test for GAD and islet antibodies that would have established that your diabetes was autoimmune in origin?

It is possible you were misdiagnosed, or that you have one of the milder forms of MODY.

I have written up MODY here: http://www.phlaunt.com/diabetes/14047009.php

I am very insulin sensitive. I controlled for 8 years with diet alone then my fasting blood sugar started to inch upwards and the amount my blood sugar rose after eating a low carb meal went over the 140 mg/dl I considered the highest acceptable limit.

If I ate a bagel without insulin, my blood sugar would shoot up to 275 or so.

I recently had surgery and yelled and screamed when they hooked me up to lactate and lectured them about my insulin sensitivity because I was terrified they’d give me a Type 2 dose of insulin if I went very high from the insulin. They did ask me my insulin carb ration and they told me they kept me around 140 so I guess they listened.

I currently use .75 unit of Levemir (which drops my fasting blood sugar to the low 90s) and 1 unit of Apidra or Novolog for every 20 grams of carbs I eat if I eat over 12 per meal. I am eating mostly low carb, though to help the surgery healing right now. This low dose insulin gives me very good readings and allows me to eat more normally. Without the tiny amounts of insulin my fasting blood sugar will creep up to 120 or so no matter how few grams of carbs I eat.

6

My endo seems to think that I’m walking a fine line here, but if it seems to be balancing without injections, let’s try it this way. He and I don’t know how much longer this will go on this way but all of the test results keep coming back the same way time after time. and it has been five years now…

I hold most postprandial spikes to less than 126 when I eat as I am supposed to and my fasting goes right back to 85 or 90 most days. If I get frustrated and eat cookies or such, it goes way up and the fasting holds higher for the rest of the day as though my pancreas says , “sorry that’s all I got right now”. I consume about 2300 calories including 225 g of carbs every day for my tiny frame. I have the metabolism of a hummingbird it seems and I have ALWAYS been this way. They even looked to see if I had some malabsorption disorder ( perhaps celiac?) but found nothing, I just need lots of calories but need to watch the carbs tightly and make sure that protein slows down the absorbtion ( I eat a lot of eggs and cheese). Of course a scotch and soda lowers the BG as well and is somehow more satisfying at a friday night out with my husband…

You gotta understand, I’m a so afraid of needles that the phlemotomist at the GP knows to keep me occupied while taking blood and GP charted me “NO injections” since I have passed out from every injection I ever got. I test BG on my arms 4 times a day and it makes me queasy if I think about it too much ( lets not even talk about fingers, I’m an architect and sketch and keyboard all day)

My biggest goal is to stay out of the hospital, because they are determined to ignore my explanations and make me sicker than when I came in. I am supposed to have some elective surgeries ( benign breast lumps keep recurring) but GP says “please delay a bit longer” because the hospital seems to keep making me worse and she has to be the one to mop up from their mistakes…

Not at all facetiously, my younger brother suggests pinning written medical directives and instructions to my hosital gown and pinning a malpractice attorney’s business card right next to it to get them to see that I am serious about my instructions being followed…

I’m glad the insulin works well for you, but the thought of “injections making me feel better” gives me that woozy feeling…

A type 1 friend of mine says to me “you are beyond “pre-diabetes” if you were a type 2 but most type 1’s would think of you as “barely diabetic” since you are making usable insulin, and not taking injections, but it must be pain to keep explaining and explaining…”

Marie

7

Antibody tests show islet cell antibodies and low level of the other kind of antibodies. Endo did the tests a couple of times over the last few years to see if they were changing but it has stayed the same. Before diagnosis the only symptoms I was having was, for about 10 months, the inability to wake up easily in the morning after years of being a morning person. My GP thinks the pneumonia was either the cause of the diabetes or the final push to diabetes resulting from an earlier bout of pneumonia a year or so earlier. Another theory is the chronic iron anemia that I had for years due to really heavy periods (from uterine polyps/ had D& C that also just about did me in from post-op nurse trying to send me home until I was BG stable) did some damage to pancreas and liver and that is the cause of it all.

8

let me tell ya something…I am the needlephobe from another world. I get panic attacks when I get the script for the bloodwork. To make matters worse, I am a very hard draw due to vien scarring from IVP’s before they did them via IV.

Anyway…when diagnosed I cried for days…me give myself a shot–me who passes out when she sees a needle…panic at the sight of a syringe…

Well I can do it…panic attack–somedays–the pump auto inserter ( i currently use quick-sets) makes it much easier. But i can mange the pen, even manage a syringe (much harder-even though I know the pen is just a syringe in diguise)

My biggest challenge to date–the CGMS sensor insertion…one down–next one Sat…

And yes I still pass out when they draw blood–thankfully I have found a good tech, been my tech for the last 2 years…she’s great (so guess its about timefor my lovely insurance company to change labs…diff rant)

But the difference in how much better you feel, and protection of long term health (eyes,kidneys, limbs) is so worth it in my book…

It is doable, you need a very patient CDE or doc, and my hubby was/is the best–but my girlfirend who has no sig other, even managed (type II terrified-but not phobic of needles)

9

Hello Marie,

First of all, I would like to say, that I know your fear about needles and injections. I tried to control my LADA pretty much the same way you did for 2 years. However, my fastings started to climb up, my post prandial readings (after meals) started to get higher and higher and eventually when I took an Oral Glucose Tolerance Test I was in the diabetic range, rather than the usual impaired glucose tolerance range I had been in for 2 years. I lost weight, I tried various type 2 drugs- prandin, metformin, januvia, but eventually I came to accept that the problem with all the things that I had been doing so far were that they were not replacing the actual thing that my body was lacking- insulin.

I was 3 antibody positive (GAD65, IA-2A and ICA) and had been for 2 years before I began lantus shots.

I almost did pass out when the doctor calmly pulled out an insulin pen and began explaining to me how to use it. I would have a mini panic attack everytime I thought about when my next injection was (and I was only injecting once a day initially). I would dread the hour and time of day and obsess over it constantly.

But then a strange thing happened:

I realized that while this wasn’t the most comfortable thing I have ever done, and it’s still really scary- it really isn’t that painful, and it really isn’t as big of a deal as I was making it into.

I got used to it. And it became less scary.

Now, I’m in a conversation about short acting insulin and when I should start taking it. I still have a good deal of residual insulin production left, but I also realize that ultimately, giving my body what it is lacking is the solution, not something to be avoided.

I do feel better when I have insulin in me- more energy and just a feeling that my body is working correctly. I cannot explain the exact feeling, but it is a good one.

All of us are suffering from the same thing- a horrible disease that will never go away, that throws us curve balls left and right, that is unpredictable and that scares the crap out of all of us.

But courageous people still have fear- they just do what they need to despite it.

There are 3,000+ people here on this website who are all dealing with this, too, and knowing that they exist and are dealing with what I am dealing with- has helped me tremendously; it has lent me some much needed courage.

I applaud your efforts to very carefully control your diabetes with diet and exercise alone. However, life will still continue to have unforseen events that will negatively affect your glycemic control- not the least of which are illness, hospital visits, steroids, unforseen carbs, or just randome days where blood sugars are inexplicably high.

Taking the insulin allows you a measure of control over these unforseen challenges. Realistically you cannot control everything with diet and exercise alone.

Courage- 3,000+ people have your back.

10

I am not trying to rant I am just trying to find people like me…because you see I AM controlling this with diet and exercise alone right now. I test 4 times a day first thing in a.m , last thing before bed and before and after dinner. My A1c is 5.4 to 5.7 EVERY TIME and I have the test every 3 months at doctors office. I also test if I start to feel funny since I can usually tell if I am going above 130 or so but sometimes its just indigestion not a high.

I don’t have the nighttime lows that I started with in the beginning because if my BG is below 85 at bedtime I have a 2 carb snack in bed and I wake up at 85 to 90. If I eat the right size portions and mix carbs with protein at all meals my postprandials never climb above 126-130 and fastings go right back down to 85 to 90.

I seem to have this down to a science and when I do intentionally go “off program” like for a hot fudge sundae to commemorate our exchange student going back to Germany, I know what I am going to feel like in about an hour or so and make plans to deal with it.

I am just trying to find out if there is anybody out there doing the same things and how they talk about it to health care people and “regular” people.

SOOOOO, I HAVE been doing this for about 5 years and I have no idea how much longer I will be doing this. Maybe insulin next year and maybe not for 5 more years, who knows.

I just want to find out if anybody else is doing the same thing and I dont want other people or the ADA or the drug companies ( when I am grumpy I tend to hold conspiracy theories about the ADA and the drug companies) telling me how much better I would be injecting insulin into my body before I have to…

11

Hi Marie
Welcome to the family. The first thing to remember is that there are about 24 million diabetics in the US alone. There is not one single one of us that is exactly like any other. What works for one does not work for another. Each of us is different. I am type 1.5 too. My A1C is 5.6 but I could not survive on your regimen…
Lane is correct. You are now part of a 3000+ family and no matter how you handle your diabetes, all of us will support you.
While we don’t do things exactly like each other, we all understand and share experiences and thoughts and feelings. Communication with “others” is a problem for all of us, even with family, spouses and significant others. There really isn’t anything that “always works” even if you had the patience of Job. I have a seven year old grandson who “gets it” better than many adults. So I offer my best wishes in dealing with medical personel and in times of crisis. It is the same thing we all go through. As far as friends and “regular” people are concerned, lotsa luck. Educating the public is a tough one.

12

Hi,l Marie,
You sound exactly like me. I have just Islet cell antibodies and can control easily with diet and exercise. I have chosen to take small amounts of insulin because it allows me to eat more carbs and maintain my weight- I am very thin and was losing too much weight on the extreme low carb diet. I still only eat 20-30 grams per meal for a total of about 100g a day. Without any insulin I couldn’t even eat this much without wild swings in BG. I only eat unprocessed food, and no potatoes, rice, pasta or baked goods. I fully expect to keep my insulin production for many more years because I believe it is possible so long as you keep your BG in the normal range. I think it is high BG that kills your pancreas, not the autoimmune attacks and hope it is not inevitable that LADA progresses to full insulin dependency. On a typical day, I do 4 units of basal insulin and sometimes 3 more of Novolog (fast acting) in the evening with dinner. Often I do only the basal. I have a supportive GP and an endo who lets me decide what I want to do. She thinks I am a little nuts- “extreme” is how she puts it because I was concerned when my A1C went up to 6.1. Since starting on the basal it has gone down to my lowest ever- 5.3. At diagnosis it was 7.2. My first endo told me I wasn’t even pre-diabetic because my fasting levels are so low and I rarely go over 180 even after meals since I still have a robust second phase response. In terms of what to tell other people, it is hard to expain. I usually say that I am Type 1 but am so early in the process that I am not yet insulin dependent. I am so happy to hear about someone who has not progressed to beta cell failure. You are an inspiration!

13

Hi Libby,

I just saw the message from your post 10 days ago, sorry I did not respond earlier.

Today I don’t feel like an inspiration; I ate this new cooked multigrain cereal and thought it woould affect my BG like oatmeal ( which for me is a pretty good slow absorb carb) but instead I am feeling yucky up at 184. It will come back down in the next hour or so but obviously this new cereal goes on my verboten list unless I’m eating eggs or something protein-ish to slow down the carbs.

I agree that the the high BG is what continues to damage the pancreas, so I try to keep the BG as close to normal range as possible.

I have found that I can tell when there starts to be a drop in insulin production because I start to put on a couple of pounds despite the food and exercise regimen and I then need to drop some carbs or step up the exercise. Sometimes it goes back to normal and sometimes it stays at the new lower level. This has happened about 6 times in the last five years.

I am seeing a new endo starting tomorrow. I like the one I have but he has started teaching at the university again and his office hours are more restricted, so I am starting with one a bit closer to home, fairly young, and a woman; since I prefer female doctors; they seem to listen better…

I assume she will run all the tests again and will give me a current update of my prognosis…

thanks for the support.

Marie

14

Hi, Marie,
I have had to adjust my insulin regime now that I am working in my garden. I was taking 5 U Levemir, but found that with all the exercise I was going low several times a day. I reduced to 4 U and took no fast acting Novolog for my meals and was under 130 after each meal, returning to low 80s within about an hour and a half. I had around 25g carbs at each meal so was very happy with those numbers. This morning my fasting was 80. You’re lucky that you can eat oatmeal. I go up at about 180, even when I eat it raw as muesli. I have developed an alternative as I don’t like eggs in the morning: I sprout whole grain oats, rye, barley and buckwheat (just to a small root, not till they get leaves) and eat that with berries, yogurt and toasted nuts. Another favorite breakfast is almond milk and berry smoothie. I recently moved into a new house and have discovered that my yard is full of wild blueberries, raspberries and strawberries so I can pick my breakfast in the summer. Good luck with the new endo. I see mine in a couple of weeks. She is very supportive, but I have to do my own research and let her know what I want to do since there are so few of us- (non-insulin dependent LADA folks).

15

I, too, will take my printed up research with me and get her take on the current routine and maybe redo the antibody testing to see where this is all going.

marie

16

I,m a newbie. Last Sept.(2007) I got pneumonia and seemed to recover okay.Then at the begining of Oct. I started to loses weight . Within 2wks. I loss 30lbs. I went from 150 to 120. At that time the doctor ordered blood work. My fasting BG at that time was 215.

The doctor told me I was T2 diabetic and started me on oral meds. However the meds made no differance one way or the other.

I can’t go on insulin because my sugar varries so much.I can eat the same things and have the same routine for several days and the BG will be greatly different.

ADA has been no help to me, and my doctor had hard time see anything other than type1 or type2

The thing that is working for me is a low glycemic diet and walking 3mi. a day and using the “power of ten” weight lifting program. By doing this my BG is avg.140 . Iv’e also been able to gain some weight back!!

I’m grateful to find others like me . I was begining to feel like I was the only one …

Any advice anyone can share will be greatly recieved!!!

17

Joe, what do you mean that you can’t go on insulin because your sugar varies so much? I would think that a small dose of basal insulin would help to stabilize your BG and prevent so much variability. You might be still producing your own insulin and this would mean that you might have some erratic results. I still have quite a bit of my own production but find that Levemir really smooths out my BG swings, and taking novolog with meals when I eat more than 15g carbs keeps my BG within the normal range. At diagnosis, my A1C was 7.2 and now my average is around 100 and my last A1C was 5.3. I’m not finding that adding a basal makes me go low, it seems to substitute for my own basal insulin and do a more efficient job. This also gives my pancreas a rest and helps prevent, or at least delay burn out of beta cells which eventually leads to insulin dependence.

18

Libby, The doctor told me this…She said ;"because there are days that I seem to produce close to “normal " insulin levels that insulin could cause the BG to go too low”.

I’m not totally sure she is right but until now ,I wasn’t all that sure why I wasn’t fitting in either T1 or T2.

I’m still looking for answers ;thats why I’m here. As I said I’m a newbie

19

Yes, that’s what my doctor thought also, but I think they are mistaken. For me, the basal insulin seems to work together with my natural insulin to give me better control. As long as you are testing frequently, and take only small amounts of insulin, there is no risk involved. I do find that if I exercise vigorously and forget to eat I might go a little low- down to 60-70- but I see this as an opportunity to have something sweet, so it’s not a problem. I do think that the best way to preserve your remaining function is to keep your BG completely normal. For me, this is easier to do when I take some supplemental insulin.

20

I’m with you on this… Now,how do I get my doctor to agree? Could you explain basal insulin to me?