Looking for a little guidance...(this is a long one...sorry)

I’m relatively newly diagnosed (this just past August), at first they thought because of heredity it was type two, but blood work came back to the contrary and it was type one and I was started on insulin. First it was just levimir and metaformin, then levimir, novalog, metaformin, glyburide but in the end the levimir just didn’t last long enough or evenly in my system (it had a like a ten hour peak) and we switched to lantus, and I bottomed out every night, so then we moved it to the morning and presto… my blood sugars where wonderful and I gained 35lbs in 6 months. This was already on (what I still think ) is a very restricted diet, no more than 30 carbs a meal (3 meals) and 45grams of fat a day, no snacks. Then the last month or two I started having and issue with my morning blood sugars, I’d wake up and they’d be about 80-90 two hours later (having taking my medicine, but not having eaten yet—long commute) it would shoot up to 200 sometimes more. My doctor said to take some extra novalog in the morning with my lantus, it helped but it still happens… he says he doesn’t know what is going on.
Then the weight gain became an issue. He’s not sure whats going on with the diet, I stick to it religiously, I walk two miles a day, and the food I’m eating is very healthy food, high fiber and protien, low carb, low fat and mostly all natural and as I said the sugars are good but the weight keeps piling on. He now says it’s because of the insulin so we’re trying to devise ways to lower the amount of insulin. We first tried Bayetta w/insulin (off label use but he had patients it worked for) it failed miserably. And now I’m up to 120mcg of Symlin with Novalog (carb ratio of 1u per 5gram of carb) and I haven’t noticed a thing…my blood sugars are still fine, I still need the same amount of insulin, and my blood sugar still bottoms out at night and is screwy in the morning. 7-8 injections a day and I feel like I’m getting no where.
So I have some questions…maybe some of you really experienced people can help me.

  1. What’s going on with my blood sugars in the morning…and how do I avoid this?
  2. Have any Symlin users noticed a reduced need for meal time insulin and or weight loss… if so how long did it take to see results or lower blood sugars from it?
  3. I think I’m having some issues with my injection sites, they seem to form little tears stemming from the site, I rotate them daily, and the doctor says I just have to deal with them… but I don’t think that’s normal (I use novofine 31g pen needles)… anyone else have this experience? What do you do to make it more comfortable?
  4. Also how do you adjust insulin for stress, sickness, and the monthly cycle… those are things that my doctor just gives me very vague answers for?

I want to thank in advance anyone who takes the time to maybe point me in the right direction or clears some things up for me. This has been very hard and a very frustrating journey so far.

Here’s a wild and wacky thought. You’re diagnosed as a Type 1 but you are using a Type 2 carb/insulin ratio which may mean you are insulin resistant. This wouldn’t be a surprise, lots of people are with and without diabetes, and autoimmune attack can hit anyone including people who are IR.

So my suggestion would be to ask your doctor if you could try using Metformin WITH your insulin.

When I take Met my carb insulin ratio is 1/15-20 without it it drops to about 1/10-12. That’s 30% difference I’m not a type 2 and I am insulin sensitive, but still, what a difference that Met makes. It also improves the speed with which the insulin works.

But what really matters is this: when I’m taking Met I don’t gain weight. When I stop it, I do.

So it would be worth a try. Docs have this idea that Type 1s don’t need metformin, but if they are insulin resistant (as are a huge number of even normal people) they probably do.

Rejection site question: Tears as in “tearing paper” or as in “crying?” If the first, I wonder if you are having an allergy to the insulin which would also explain the apparent insulin resistance. If you are seeing little drops of insulin, try keeping the needle in longer. I get that sometimes.

Finally, how I adjust insulin (where the dose, for me, is always changing it seems) is testing every day, writing down my doses, writing what I ate (grams of carbs) and making very small, careful adjustments on my own based on the past couple days for the given time of day. Time of day makes a huge difference for me. In the morning I need more insulin than at lunch or dinner.

Hi my name is Beth and i have been diabetic for 5 1/2 years. well i can’t give you the answers for everything, but my experience with symlin wasn’t that great. It made me sick to my stomach. I didn’t need as much insulin because the medicine made me lose my appetite. I stopped taking it about 6 months after my doctor put me on it and now that my husband and i are trying to get pregnant i can’t take it anyways. If your doctor is not giving you enough information you should see if there is a nutritionist available to talk to. If not you may want to consult with another doctor. as a diabetic it has always been important to me to have a doctor that understood me and that i was comfortable with. I hope that helps. If you have anymore questions please let me know

Thanks for replying.
Me and my doctor talked about either possible allergy to the novalog (i thought I was allergic to the novalog because if it does leak out a little I get a red rashy spot) or insulin resistance, he wants and hopes it is just insulin resistance because my numbers and ac1 where so good he doesn’t want to change anything.
I’m still taking metaformin and the glyburide (in the form of Fortamet, 1,0000mg daily, originally when I started I was taking 2000mg daily but it upset my stomach and we reduced it ). There is some definite wierd things going on in my immune system right now we’re also doing tests for ms/lupus/fibro as I have a lot of other health issues) but that too is a long shaky process.
To clarify when I said tears I meant like paper tears they start in the injection site and in the process of a day turn into what looks like a little scratches.
I think I’ve actually been doing ok on the symlin. I haven’t had any stomache upset or anything else, It does make me not hungry and I have a hard time even eating my 30 carbs to be able to take it. I just haven’t seen the reduction in my meal time that I was hoping for and or even better numbers.

i’ve tried to set up the appointments with the diabetes group nutritionist but she was booked til the end of July! And I met once with a diabeties educator to see about an insulin pump (which I desperately want) obviously she didn’t look at my chart because she tore into me telling me I eat too much and not doing a good enough job with my diabetes and should be trying to get off insulin and not use a pump (literally made me cry). … I’ve been pretty traumatized since and she’s the only one that does the pump/cbm training in that group I am no closer too pumping. It’s ashame the endo himself is very very nice and knowledgeable, the rest of the team seams to be either just horrible or not available, but we’re on an HMO and this is the only diabetes center in our area they cover.

Hi Meg,
I am sorry for the problems with the diabetes educator. Please do not take to heart the really mean things she said. And do not go back to her or anyone who can not be supportive. It sounds like you have a really good relationship with your endo and should keep seeing him. The rest of this can get worked out.
I think your liver is dumping glycogen on you in the mornings before you eat. Maybe you could try taking in something that is easy to drink or eat out of your hand while on your long commute to work. Work with your doctor to make small changes at a time to your insulin and make sure you log everything. Absolutely everything. I am old fashioned in that I use a pen and notebooks, but whatever works for you so that you can look back over every little change you make and see where you get with each one. This will all take time, but you can make it. The weight you can work on when you get your meds worked out. As far as injection sites are concerned, be sure to rotate each time and see if this helps. Also when you bathe or shower use some nice lotion or light oil to gently massage all of your injection sites (and all of your skin if there is time)… At the present time i am using some pure almond oil. but whatever is acceptable to you. The purpose is to treat your skin and to help circulatiuon at each of the sites. I really wouldn’t worry about trying to get a pump right now. Especially if you have to deal with that horrible DE. What you need is what you are doing. You have asked for support. That was a great step and you will find it here. We will each have our own ideas what may help and that is fine. If one thing works for you, use it and it will make us all happy. Here you can do NO wrong. It is trial and error for us all and we all keep making small adjustments each day. Just don’t get discouraged. Hang in there. Here is a great big hug from me. Good luck.

Wow…you’re a type one and your pump educator actually told you that you should try to get off of insulin? Do they realize that as a type one diabetic, that isn’t a possibility?

If you’re really interested in getting a pump then I would suggest doing some research online about which pump you would be most interested in. I’ve been dealing with the pump sales people (who are extra interested in you getting a pump, since it benefits them! hee) directly lately and have had them act on my behalf for getting a pump and they have been actually been a big help! I feel like the pump processes has sped up since I’ve gotten in contact with them.

Try talking to your endo about your problems with the team. They’re supposed to be there to help you with your diabetes, not prolong you getting onto treatments that would help you in the long run. nod

Good luck! :slight_smile:

Thanks! Interestingly enough it was the endo who said I needed a pump (because of the ammount of injections I’m up to vs quality of life) and set up the appointment…I think she just didn’t look at my chart just saw what my numbers had been before insulin and that I’m by no means a little woman (I’m 6’ and not a waif but not grossly overweight either) and assumed I was type two. I talked to both my endo and the office manager about my incident with this DE and both agreed that I would never have to see her again and that they were sorry, also that since the practice had grown so much they were hireing another one that they thought I would like much better… alas she hasn’t started yet.
About the pumps (really I think they’d just make my life so much more comforatble and my sugars easier to manage) I have been in contact with both Animas about the 2020 and the omnipod, I’m not sure which would be better for me I swim advidly and have 5 boys to run after so durability is a must.
This is such a great community and so active, I’m really happy I found it, it’s made putting some of the pieces of treating my diabetes back together for me!

Hi there!!

Insulin can (does??) cause weight gain, and also, when your diabetes is undiagnosed, you may lose weight. So when your blood sugars level out and become more normal, you regain that weight. So that may be what is happening there…

To stop the little tear drops from forming, I just leave my needle in for a little while longer so that it can get absorbed before taking it out.

I definitely feel your pain with the CDE!!! For my own issues you can read my blog at thisismysos.blogspot.com. I completely do not understand how some people can be so harsh when all you are trying to do is get on track. Isn’t it scary enough???

Good luck with everything! You CAN do this! =:~)

Another suggestion about the blood sugars going up in the morning even though you haven’t eaten yet - are you a caffeine achiever like me? Coffee stimulates the endocrine system, so will make your blood sugar go up, even though you haven’t eaten anything. I work in a medical lab, and part of doing fasting labs is no caffeine, because of the effect on BG. Might not be the only reason, but could be part of it. It also sound like you might be a type 1.5 or LADA. Check the posts for that group, and do some searches on the internet for more info and see if it fits, it might explain some of the things that don’t seem to be quite like type 2, but exactly type 1 either. (For example, some of the oral meds help type 1.5’s, at least for a while, but don’t help a classic type 1.) Good luck!

I have unfortuneatly witnessed the caffine phenomenon. I used to LOVE love love my coffee… I’d drink it several times a day until I really saw what it did to my blood sugars, they went thru the roof! I gave it up aside from an occasional cup of decaf (even though there’s still some caffeine) seems to be ok as long as I use half and half or cream, not milk.
I’ve been waking myself up in the middle of the night to see what’s going on with my sugars then because I wake up feeling like I’ve been run over by a frieght train (which is often how I feel after a low) and my sugar was 40! Had I not set the alarm I would have no idea. I think my high morning sugars are from that rebound thing (I can’t spell the actuall term for it). Which I guess has to do with my Lantus rate, does it mean my dose need to be split or decreased? Which is even more confusing to me because on the Symlin my blood sugars after my meal are about the same as before but will start to go up 3-4 hours AFTER, which never used to happen before I started Symlin-- the doctor said that this means we would have to increase my Lantus. I’m confused.

Hi Meg - sorry to hear about the crap CDE. Hopefully you can find a good one that supports pumping. I love my pump so much that it will only be pried off of my cold, dead body.

Some suggestions for now -

  1. you should talk to your doctor about splitting your Lantus, or more to the point, going back to Levemir and splitting that into 2 doses. I found that Levemir worked for about 12-13 hours for me, but I had almost no peak so it wasn’t too bad. Supposedly Lantus has a definite peak, but it still doesn’t seem to last 24 hours for most people. The lows in the middle of the night are probably because you don’t need as much basal at that time. This is one of the places where a pump is fantastic - you set lower basals for when you need them.
  2. Your morning rise is most likely dawn phenomenon. Mine starts about 6am, for others it starts earlier or later. But once it starts, my basal needs go from 0.4 units/hr to 1.5 units/hr (that’s almost a 400% increase!). It stops either around 9am or when I eat. Again, you either need to take rapid-acting to cover it or eat as soon as you wake up.

Good luck with everything. Hope you get your pump soon. I was diagnosed in June last year and was pumping in September, so don’t let anyone tell you that it’s too early to pump.

Hello Meg,

Hang in there. This disease takes a lot of trial and error I have found. Stress is a funny thing. I have learned that certain stressful situations totally raise my BS, like job interviews for instance. The trick is knowing what situations are likely to cause you stress and how your body reacts. That can be different for everybody. Still today, after dealing with this for 25 years, stressful situations sneak up on me and it feels as if all I can do is damage control once my sugars get out of whack.

I hope you get on the pump. It makes stess and sickness that much easier to deal with. When I’m sick I don’t always want to eat, the pump helps with that.

I have been pumping for about a month and my blood sugars are almost always between 80 and 160. I no longer have to “feed” my lows. If I drop below 100 I just adjust my basal rate for a few hours to get myself back over 100. If I am over 160 I adjust again to give myself a little bit more insulin. If I decide I want a regular soda, I just adjust my basals again so that I don’t have to worry about going to high. I fought for over a year getting an insulin pump as my insurance didn’t want to cover at I was diagnosed with type 2, but have since found out I am type 1.5. Pump makes life a lot easier. I have found my Minimed 722 is pretty durable. I have gotten my tubing caught door knobs and more than once I have forgotten I have had it on and gotten out of bed without it being clipped to anything or in my pocket and it dangled and the infusion set hasn’t gotten pulled out.

Meg,

I had a problem with Lantus causing rebounds in the morning even with split doses. I’m much more sensitive to basal insulin than post-meal insulin (some weirdness of my particular kind of diabetes)

But I’m doing MUCH better with Levemir instead of Lantus, I do two shots with a slightly lower dose at night than in the morning, and for the very first time in my life when I cut way back on carbs, too, I am seeing fasting blood sugars in the mid 80s both waking and before meals. (before if I cut carbs, I would eliminate spikes but I would still have a fasting bg 110-120.)

I have been using insulin for a couple years now, and this is a first, as I get a very strong rebound if I go over the right dose.

I did NOT gain weight at all during the two years when I only used Regular Human Insulin. Then, very fast, I gained a bunch of weight when I switched to Lantus with Novolog.

I think it is because the swift drop in blood sugars caused by the faster insulin makes me hungry so I was eating more without really realizing it. Plus with the R, I had to plan what I ate, because I had to inject an hour before eating. With the Novolog, if I wanted to eat something I injected there and then, so I ate a lot more.

I developed an allergy to the R, thanks to being stupid and adding NPH to my regimen (the protamine in it causes antibodies!) So now the only way i can lose weight is to cut way down on the carbs and on the fast acting insulin.

I think in the end maybe my endo has been a little over zealous and changed to many things too fast at the same time, that it’s been hard to sort out what helps and what doesn’t. Like I was put on my 30carb meal (3 meals a day—the nutritionist at the hosipital seminar said I shouldn’t go much lower than that or I’ll start harming my lean muscle mass) 45g of fat per day the same time they switched my insulins and added glyburide (which I don’t even know why I’m on a drug to stimulate my pancreas when I have no function at all) and decreased my metaformin. My blood sugars have gotten so much better (when I was diagnosed my ac1 was 12.4 down to 6 this last month) but its hard to tell what’s really doing it and I take a lot of shots and a lot of insulin to get there, but in the mean time I have so may scary lows and swings (like the mornings) it makes life difficult, I would just like to get on an even keel even if it meant my ac1 go up a little bit… once again tomorrow calling the endo… see if we can’t simplify this any. You guys have been so helpful I have so many new questions for him now.