Taking less insulin to avoid weight gain....HELP!

Hi , my name is Jackie and I could really use some support right now.   Here is a little background, I was mis diagnosed with type 2 when I was 24.  As my honeymoon phase dwindled, my doctor realized I was a type 1.  This revelation occurred a couple months before my wedding.  I went to a new, highly recommend endo who put me on insulin right away (lantus and novolog on a sliding scale, I still don't know how to count carbs!!)  I previously was on meteformin and byetta and my sugars were not that out of control.  To make a long story short, I gained almost 20 pounds in the two weeks since I started insulin.  This sent me into a total panic.  I was already working harder than usual to look fabulous for my wedding day so this was a huge setback!  not to mention that I purchased a very expensive gown that I was not going be able to fit into!  I informed my endo and he started me on symlin and sent me to a nutritionist.  I started at 1100 calorie diet and was doing cardio for a minimum of an hour every day!  Still no results.   Here is the part that I am embarrassed to admit....in a desperate plea to get rid of the extra weight, I stopped taking my lantus and novolog!  I used the maximum amount of symlin every time I ate and stopped testing!  (wow I have never told anyone this)  I very rarely had any lows and I am scared to think how high my sugars reached!  Yes, I did lose the weight but was still very angry about my diabetes since I was at my break even weight rather than the 10 pounds less I hoped to be at my wedding.  I know it must seem like I am very vain and/or have an eating disorder.  Truthfully, I have a pretty good body image and have always been very confident.  I have never taken extreme actions to lose weight in the past.  I think the timing of the new diagnosis and insulin treatment brought out all my anger about being diabetic.  When I was first diagnosed, I was a model diabetic, did everything I was supposed to and MORE.  

The wedding has passed and it was everything I dreamed of.  However, I just can't seem to get my diabetes under control.  My sugars are constantly VERY high, but I am so scared to take insulin and gain weight!  I know that my health is suffering, but I can't seem to get out of my own way!

I really want to get my diabetes back on track and hope to start a family.  We have met with our high risk doctor and she informed us how important super tight sugar control is for at least three months before we even try. Being a mother is the most important thing in the world to me, yet even that can't get me to get my diabetes in check! Help!  has anyone else felt this way?  any advice? thanks for letting me share!  

First of all, congratulations on your marriage!  Second and maybe more important, is you need to be taking insulin!  If you want to continue to be able to enjoy your marriage, you need to get back on track!!  Did the nutritionist teach you about counting carbs?  The less carbs you eat, the less insulin you will need to take.  But you need to have a minimum amount of carbs to be healthy!  I have struggled with weight for a few years.  My BMI tells me that I am obese, but I don't consider myself to be.  I would like to lose 20 pound or so.....and I am doing that by eating as much fiber as I can and just trying to make healthy food decisions!  Fruits and vegetables are my favorite. 

Please talk to someone about this.  If you aren't taking insulin, you are not doing your body any good.  I don't think I was much help, but you need to get the help you need right away!  I wish you all the best!

Thanks Angela!  I have started taking insulin here and there but definitely need to gain better control.  I do not know how to count carbs and need to learn, any tips?

I meeting with a new endo (my last one was very very acclaimed, but not as accessible!) next monday and hope to turn things around.  I am pretty educated about the basics of diabetes which makes me all the more anxietal about my poor control.  My BMI is only 1 point above normal for my size (I am 5'4") but I am so scared this is going to go way up as soon as I start the insulin my body really needs! ahhhh

thanks for responding....it really helps to hear that I have to get my butt in gear from an actual diabetic verses non diabetics that don't understand!


Ok ya congrats on your marriage. About taking less insulin becuase your afriad youll gain some wait isnt a wise choice. I know i shouldnt be speaking cuz im so young but still. I think that ur health is more important than jus a couple pounds. If your husband truley loves you he will accept who you are on the outside and the inside and why should you care what other people think of you. You look pretty just the way you are and if they cant accept it well then why should you care!!!

Hi Jackie, you looked great in your wedding gown, I know that meant very much to you. It will mean even more to get good control of your blood sugar levels. Running highs over a long period of time can lead to very bad complications. I assume you know that.

I hope you will read my new discussion that I am starting today. It is called "Double Diabetes".

and on counting carbs its pretty easy all you have to do really is look at labels look for Total Carbohydrate and see what it says. For eating out though, there is alot of websites like calorieking.com you can just type in something and it shows you an amount of carb and calories and all the nutriton facts. You can type in stuff even like mashed potatoes and it will give u an amount

Hi Jackie,

What you've described is something others struggle with, too.  The term generally used for it is Diabulimia - you can find a thread about it in the Young Adults section under "Groups":  http://juvenation.org/groups/youngadults/forum/t/6537.aspx 

As for carb counting - there are a few ways you can learn.  The American Diabetes Association website has some good information on it:  http://www.diabetes.org/food-and-fitness/food/planning-meals/carb-counting/  , and this article on Diabetes Network has some ideas on how to get started:  http://www.diabetesnet.com/diabetes_food_diet/countcarbs.php#axzz0tP1l9pWG   Read the labels on your food - get out the measuring cups, buy a food scale, etc., to help you learn.  After a while, it will be second nature and you won't have to look up the nutritional information on everything anymore.  Some also buy a Calorie King book to take with them to restauraunts - something you might benefit from as well.

What I will say next is not intended to be mean, or derogatory; it comes from a place of empathy and concern, and I hope that's how you take it.  I would encourage you to be brutally honest about this with your new endo.  What you're doing is extremely dangerous - I think you realize that, to some extent.  The decision to not take insulin is what leads to diabetic ketoacidosis, and diabetic complications down the road.  People die from what you're doing, Jackie.  Your medical team is there to help you - but only when you're willing to take the help.  Your endo may be able to refer you to someone you can talk to, to work out some of the issues you mentioned. 

All of us here at Juvenation are here for you, and rooting for you.  If you need someone to listen, someone to give you advice, whatever... we're here.  I hope that someone who has gone through the same situation will reach out to you here. 

Best wishes.  You are in my thoughts.


Thank you all so much for responding!!!  I am new here, and it's great to hear from people who understand!

Shannon, you are more than right about health being more important that a few pounds.  My husband is great and I know he will not only love me and think I am beautiful even if I gain weight.  He is wonderfully supportive and feel very blessed for that.  I do not care as much bout what others think of me, it's more that I don't feel good about myself when I am overweight.  I workout and eat well, but having diabetes makes it harder, I'm sure you know :)  I love to hear that you are wise beyond your years!

Richard, thank you for the compliment!  I am very aware of the scary complications, I think that is what pushed me to make it public and reach out today through my post.  I look forward to reading your discussion.

Kim,  wow, thanks a million for all the information.  I have noticed that you respond to a lot of the posts that I have read on here.  You are a wealth of information and I'm sure have made such a great impact on so many people on this site.  I have heard of diabullima, very scary stuff.  It terrifies me to think of the young teens with diabetes that could so easily fall into that.  It really scares me that I am an educated and well-loved woman surrounded by great people and I still neglected my health to look good.  Although, maybe I am in denial, but I do not think I fit that full diagnosis.  I guess I do, since I did stop my insulin to loose weight.  However, I did not know I was going to lose weight by doing that, I just couldn't afford to gain any more before the wedding.  Either way, I want to be healthy and somewhat know what I need to do....Just have to do it! I plan to be very open with my new endo.  I am actually meeting with the diabetes educator first and am looking forward to it.  Since it was thought that I has type 2 in the past, I did not have an active relationship with my endo, just regular check ups and med updates.  When I became type 1 my family got me into one of the best endos in my area.  While I'm sure he knows what he is doing, he didn't offer the one on one attention I think I need.  The new DE that I am going to works at the same hospital as my high risk gyno, I figured I needed a fresh start and this way I will have a fantastic medical team that work together when (and if ) I get pregnant down the road.


CARB COUNTING.....I haven't been on insulin too long and currently take lantus at night based on what my BG is and the novolog before each meal, again based on my BG.  I have a diabetes food scale (eat smart nutrition scale) that counts carbs, the ADA Carb book, calorie king, etc.  I am also very educated on reading food labels (when I was first dx with type 2 I completely changed ALL my eating habits and became very healthy)  my question is.....I don't know what that means in relationship to insulin!  I try to eat a low carb diet but never learned how much insulin to take to cover carbs.  Is there an equation or does it differ from person to person?

THANKS AGAIN!!! sorry for my rambling! I just read back what I wrote and realized I went off on a few tangents.  It really feels good to share, sorry if I get a little too personal!

The relationship of insulin to carbs (I:C ratio) is something your new medical team will help you determine.  It's different for everyone.  It can even be different depending on the type of food you're eating, and can especially differ with the time of day you are eating.  For example, I take more insulin per gram of carb at breakfast than I do any other time of day, because I tend to, like many, be more insulin resistant in the morning.

"I know what to do, I just have to do it" is the hardest part - you're right.  Reaching out to other T1s is a good first step in figuring out how to do that - we've "been there", so to speak, and we help keep each other accountable.  Good luck.  :)

Thanks again! I will keep you posted!

Kim offers excellent advice.  There are also many carbohydrate counting books that you can purchase at any bookstore or even online.  The best thing to do is to talk to a dietician/nutritionist and he/she can help set you up on a diet/meal plan that you can manage and keep your weight in check!  When I stress, I eat!  Don't know if you are the same or not.  Please keep us posted!

I went to Johns Hopkins but the endocrinologist there was never able to get back to me or send me my results so I am switching. I also used to go days and weeks without testing (bad idea) and now I am on the sensor and getting tested 12 times a day so I can't even imagine being as crazy as I once was in college. I responded on your wall with a longer response but then I saw this post and I thought I would just add this in!

I went to Dr. Chris Saudek out of Hopkins, is that who you were seeing??He was very good but I didn't get to work with him very much.....twice I had an appointment that I made months in advance and the apoointment setter would call a week before and cancel  and suggest I reschedule with the NP/DE.  I also had appointments with the NP/DE cancelled at the last minute. I know he is an excellent endocrinologist but I need more face time.  I am switching to someone at Georgetown University Hospital since my OG/GYN and high risk doc are out of there.  Open to endo suggestions though.  I was seeing someone in Rockville in the past.

Carb counting is easy just add up the carbs for what you are eating and divide it by well your ratio. My daughter is 9 counts her own carbs she weighs out her own food and looks up the carbs in the cal king book or looks at the package per serving for the carbs. We started at 1 unit of insulin for every 25 carbs now she is down to 1 unit for every 12 carbs.

There is not an Endo alive that can help you if you do not give them info and cooperation.  Your comments: "I eat well" without insulin, what you "eat" doesn't count. It is what your body can use of what you eat that matters. Without insulin, all the carbs  (that includes whole grains, and no such thing as "good carbs/bad carbs without the insulin to process for body use) all carbs will stay in your blood, then be excreated through your kidneys.  Your body will only use fat without insullin, then will use your muscle tissue.

Why are you adjusting lantus based on your BG at night?

For a long time I would not count my carb's But I am getting better...I am on the pump too that halps alot...My carb ratio is 1 unit for every 8 carbs...And u really should try Jackie ur husband can help u too if u want him too...And he should help u

I went to Dr. Annabelle Rodriguez at Hopkins, so I guess they are not very attentive there. They treated me like I knew nothing even though I have had diabetes for over 17 years so I think I have a pretty good idea of what's going on! I'm trying a local doctor next month, so I'll have to see how that goes.


Just have to mention that the initial weight gain after diagnosis would not normally continue -- My son gained a ton in the first two weeks...because he had been starving from the inability to utilize the food, once he got back to where he should have been all along he leveled off.  My son gained 15 pounds in the first couple weeks of dx - yet now he is off the charts LOW in weight / height ration.  SO if you are afraid of continuing to gain weight  that isnt really the case. Try it - you will see that the weight will level off.    I also would like to suggest that  some of your issues and concerns could be well addressed with the diabetes educator -- the endo is probably not going to sit down and talk through the carb counting and all with you -- but the educators wil.    Congrats on the wedding  & please take care of yourself.

thank you all for your input!!!  I was obsessive (in a good way) about my insulin yesterday and my sugars last night and today have been lower than they have in weeks.  I am headed in the right direction and just hope to stay on track.  Sharing with you all yesterday was huge in helping me motivate to get healthier.  I will keep you posted!  Thanks again!

Glad to hear this, Jackie - keep it up!  :)