Scared of Insulin - Medication Trial and Error

Hi everyone!
My name is Leah, I’m a 42 year old Type 2.
My journey with diabetes started 16 years ago while pregnant with child #3, and it was a real shock to me. Before then, I was slim, healthy (I thought?) and that pregnancy definitely did a weird number on me and I’ve never been the same. My metabolism got all messed up and I’ve been very overweight ever since. Got GD again with my next child, and unfortunately didn’t take it seriously enough to maintain the lifestyle changes I adhered to during pregnancy. I was in denial that diabetes could actually apply to me. No one in my family or extended family is diabetic.
Fast forward a few years and my HBA1C kept creeping up… but denial mode prevented me from addressing it. As did fear of diabetes medication.
10 years ago I was also diagnosed with Celiac, which was another shocker because I had no symptoms nor does anyone in my family have it.
I couldn’t really hide from my diabetes forever, and about 5 years ago I started medication. First, Metformin which have me nasty side effects and the doctor recommended I reduce to half a pill, which I tolerated fine but didn’t do anything for my blood sugar. Next was a very short stint on Januvia, which again, I couldn’t tolerate. Then came Amaryl (Glimepiride) which I actually did fine on, but didn’t control my blood sugar well enough and I got hypos a lot. Doctor added Jardiance, which was great for the year and a half I was on it, but after getting some recurring UTIs and thrush, he told me to stop taking the Jardiance. So… my HBA1C creeped up from 7.3 to 8.6 over 8 months, and then my insurance approved Trulicity. Two weeks before I started Trulicity, I got a Libre to get a better idea of what’s going on (my insurance doesn’t cover the Libre for type 2s, so I pay out of pocket, ouch).
Trulicity was a nightmare on so many levels. Between being needle-phobic and the horrible side effects, I sure haven’t been happy. I am on week 10 of Trulicity, and finally have overcome the actual injection anxiety. However I still get nasty side effects.
I saw my endocrinologist on Friday. My latest bloods were unimpressive, HBA1C at 8.4, which he believes is not good enough to warrant the side effects. He wants me to move to Xultophy, which is a combo of the same stuff as the Trulicity but in a lower dosage, and a low dose of insulin. It is a daily injection.
I found this forum while googling “I’m scared of insulin” because I am! I don’t know why, it’s not the injections themselves, (although I admit, that’s also a thing) but actually moving to insulin makes me feel like a failure and that I’m so sick. :frowning:. I hoping to find some insights and encouragement here.
I have been a vegetarian my entire life (born to vegetarian parents), I recently transitioned to vegan to try and control my blood sugars. I don’t eat any sugar, any sweet drinks, no coffee tea etc. and I’m 100% gluten free and the only non gluten “substitute” I eat is the occasional rice cake. I envy those who have transitioned to a vegetarian/ vegan diet or just stop drinking soda and the pounds fall off them and they attain great Blood sugar results!
Sigh :pensive: I’m feeling kinda down and frustrated.

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Hi, @Leah10! Welcome to TuDiabetes!

I moved your comment to a new discussion hoping to get it more visibility!

I’m sorry about your trials with medications. I believe other members will have some great experience to share that may be helpful. I know how scary it was when my son was diagnosed with type 1 to think of injecting insulin multiple times a day. He was three, and it wasn’t always easy, but it’s amazing how quickly we (he) can adjust when you have no other choice! Nevertheless, it can be discouraging when your body needs help bc it’s not doing exactly what it’s meant to.

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Thank you! And also for your encouraging words :slight_smile: happy to join the community.

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Hi @Leah10! Welcome to the site :slight_smile:

Getting the Libre was a fantastic idea.

I understand why you’re using the word “failure” here, but I wholeheartedly disagree with the application. Diabetes is one of those conditions in which the outcomes rely so heavily upon the actions of the person with the condition. Unfortunately, this means that a blame game is really all too easy. In reality though, it’s a complex condition and we’re all just imperfect humans. Shame or feeling like a failure doesn’t help anyone… most especially you!

The situation remains the same whether you begin taking insulin or not. However, it sounds like taking insulin may help you lower your A1c and reduce your chances of complications. The feeling of failing doesn’t help anyone, but taking the steps you need to stay healthy will most definitely help you!

I’m not sure what the doctor will start you on, but I absolutely love taking Tresiba as my long-acting insulin. I take it once a day in the morning. It’s very long acting, lasting several days. You’re essentially layering several days of insulin. That seems to create a really strong, steady, stable basal for me. I love it. I’ve also spoken with others who really like Toujeo, but I’ve never tried that one.

In any case, I’m glad you joined the crew here :slight_smile: We’re all just trying our best, but none of us are perfect. Having had diabetes for over 20 years, I’ve found that the perception of failure never seems to help. Instead, just get up tomorrow and tweak things a bit to see if you can get better results going forward.

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I too second the welcome! Great group of people here.

I’m T2 diagnosed around a 9 several years ago. I tried all kinds of meds including Victoza and was finally put on insulin. Just this past week I went from a 6.3% 3 months ago to a 6.0 and am very pleased! What worked the most for me was eating lower carb (40-60 per meal) and walking! I too was afraid of needles, but you will get used to it.

My work insurance is very good, so I"m on a Dexcom G6 and a Medtronic 630G pump so I don’t have to stick myself quite so often. I love the freedom the pump gives.

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Whenever I hear a type2 say that they feel like a failure because insulin has been mentioned or prescribed I feel I have to speak up.

No you have not failed, type 2 is a progressive disease, there is no way to completely stop it. The best that we can do is slow it down and maybe even push it back for a while but for most it will eventually continue to progress., It is the nature of the beast.

Insulin is not a sign of failure, it is a tool. You have been fighting the good fight for 16 years now and your doctor has given you increasingly better tools depending on your needs at the time. Insulin is the next tool in line.

I started insulin therapy in 2011, Insulin has helped me continue the fight against diabetes. Have I failed, No, I will not have failed until I give up the fight.

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You’ll be amazed at how effective insulin is for managing glucose levels!

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Are you sure that you are type 2, and not adult onset type 1? Might be something to ask your endocrinologist.

Confirming if you are type 1 involves testing for antibodies and also checking insulin levels.

I am asking because you also have celiac, and frequently type 1 diabetes can be found in combination with other autoimmune conditions. also, it seems that you are not getting decent response with first line type 2 meds.

There is no failure in diabetes. There is only appropriate management. You can do this!

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Thank you. I don’t even know exactly what it is about insulin that scares me. My doctor wants to put me on Xultophy, which contains degludec and liraglutide (the latter being basically what I’m taking now in Trulicity).

Thanks, Brad. I don’t think I need to look into pumps yet, as this will be my first try on any kind of insulin. Will be a daily injection.

I agree about having a sensor! She much better than finger pricking :slight_smile:

Thanks Gary, I appreciate your input. Thinking of insulin as just another tool for diabetes management sounds like a good way of looking at it.
I keeping saying I’ve been doing my best, but maybe I haven’t… maybe if I were doing something different I wouldn’t be at this stage :neutral_face:

I sure hope so! I’m encouraged by hearing how people feel so much better after starting insulin.

Interesting thought. I didn’t know there could even be adult onset of type 1. I’ll mention it to my doctor next time I see him.

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@Leah10 -

This is probably not what you expected to hear, but you should know that if you’re eating a standard vegan diet, it’s loaded with carbs. Which is exactly what you should avoid.

Suggest you look into switching to a low-carb or even keto-vegan diet.
Jim

Hi Jim!

That’s definitely a concern, however being celiac “helps”, and I do try and eat fairly low carb. My Trulicity “helps” with avoiding that too… :neutral_face:
I looked into a few keto vegan meal plans. Seems like a lot of ingredients that are not available where I live. But aside from that, I don’t really do well on soy, and avoiding beans and legumes, which are really the base of my protein intake, may be too harsh for me.

Hi Leah,
First of all, you are not a failure. I was diagnosed type as a type 2 fifteen years ago and did really well for about three years behavior-wise. I did everything that was expected, and then I reached burn out. No one in my family on either side has diabetes, and I assumed I was immune. No such luck. I guess anyone can become “patient zero” when they least expect it. After burn out I was in denial and ate whatever I wanted, and as much of it too. A year ago I got my first real scare and it was enough to rattle my denial and so for the last year I have been compliant, managed to get my A1C down to great numbers, and have lost weight. I gave up my beloved diet soda and now only drink seltzer water, which is actually fine as it was the bubbles that I love, and it is widely available with flavoring. I became very reactive to sugar alcohols, so I now have to avoid a lot of products that are labelled for diabetics, because the diarrhea is not worth the momentary enjoyment. I am not vegan, although I wish I was, but have eaten a vegetarian diet for over twenty years. That is slippery though because it is too easy to eat high fat dairy, so now I only use almond milk, which actually tastes very good. I don’t have any advice on medications. I take metformin 2X a day, but managed to get off the glypizide when I lost some weight. Anyway, you are not a failure, but your pancreas is giving you a run for the money. Not the same thing at all.

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I am in complete agreement with you on this one. While I am type 1, I know many, many people with type 2 and many who ended up on insulin and felt like a failure. No such thing!!! There is no failure here. It’s just the way the dismay progress. For some the pancreas just can’t keep up anymore.
And as scared as many are about starting insulin, everyone of them has told me, they are sorry they waited so long. Once they started insulin they felt so much better.
So while it is a major learning curve, it is very beneficial. Good luck with whatever treatment plan you end up using, keeping in mind this disease never stands pat, it’s always changing.

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Hi;
I’ve been T2 for about 25 years. I went on Glyburide first and it did well for me for several years (about 4) and then suddenly my A1c sky rocketed. While not over weight or an unhealthy eater there is family history. Then my endo tried me on several meds (actos, etc) and none really worked. Then a year or two later she put me on injected Lantos at night and Humolog U100 before meals. I had to learn how to count carbs. My first A1c was 5.7. Ten years later I got tired of 4 injections a day and went to an insulin pump using only Humolog. Now I insert a new infusion set every three days. Counting carbs is not easy. Sometimes I make mistakes and end up going low, but my A1c is running 6.5. Don’t be afraid of insulin, it will give you better control of your blood glucose.

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I skipped the sulfa drugs because they interact with Warfarin and cause life-threatening hypoglycemic events. I have to read about every medication I take because Warfarin interacts with just about everything. I went from Metformin straight to mealtime insulin. Insulin is as close to a cure for diabetes that you will find. It has lowered my A1C from 7.1 to 5.4. It is not fun injecting, but BD makes some needles that are ultra-thin. You will eventually get used to using insulin and once you see you A1C drop, you will wonder why you didn’t start using insulin sooner. If you are afraid of the small amount of pain from the needle, you can use an ice cube to numb the area before you inject. It will take you a while to get to know what doses of insulin you need to control your blood sugar, so please always have a lot of fast acting carbs on hand in case you go into hypo. I rotate the same couple of meals every day and know exactly how many units to use for each meal and how much to lower my units on a work day. Insulin works better when you have been active. So sometimes you need less insulin after you work out, or in my case my job is very physical and is almost like working out. You really need to bring that A1C down in order to prevent future complications. I hope you are feeling better today.

J

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Welcome, I am a type 2 ,25 years. I have been taking .lantus and trulicity for years. I also exercise. You say. You are afraid of taking insulin. So it is not the shot, just insulin? I look at medication as a tool. We need it to be healthy. Keeping exercise,diet and medication in our tool box. So work on changing your mind set, no more “fear of insulin” . “ insulin is a tool for us to use to keep us well”. Good luck to you! Nancy50

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