New type 2 diabetic frustrated and confused

Type 2 New to Type 2 diabetes
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Hi there. I was diagnosed with type 2 diabetes on 4/28 with an a1c of 11.7 and a blood sugar reading of 298 after going to the ER with tachycardia after a round of prednisone for an allergic reaction. They started me on Metformin 500mg twice a day with the goal of increasing it, and starting an aggressive diet and exercise plan. This wasn’t an issue for me because I had been walking or hiking daily for the past two years, and for the past 8 months I had been doing crossfit multiple times a week. My diet just needed to change.

I made the change to my diet, and started on the Metformin. Lower in carbs, and being mindful about pairing carbs with proteins and fiber. I instantly started feeling better, and my appetite was greatly decreased. When I saw the diabetic educator for the first time 5/18, and she tested my a1c and it was a 9.0. I felt so good about that! I thought this meant that the treatment was working, and that we could just proceed with it.

However, I talked to my clinical pharmacist two days ago, and she said that I still needed to go up to 1000mg of Metformin 2x a day, and if 90 days later I was under an a1c of 7.0 I wouldn’t need to add an additional medication. I’m totally confused. It hadn’t even been a month, and my blood sugar readings are trending downward still. Over the last week I haven’t gotten a blood sugar reading over 170, and most of them are closer to 115-125.

I’m so confused. I felt like things were getting better, and the diabetic educator was really happy about my a1c reading. I get that it’s still not a good a1c, but it’s heading that way.

Does anyone else have health care providers that have different opinions, and what do you do? My gut says that my current dose of Metformin is fine with my aggressive diet and exercise plan. But I have also read a lot of other posts here that say that someone with an a1c as high as mine at diagnosis and with symptoms should be starting on a lot more and using insulin to get their blood sugar into a normal range.

It feels like there’s so much information out there and I can’t figure out what to do or what is right. I trust my health care professionals, but two of them don’t seem to agree.

Please help,
Beth

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Hi Beth.
The only thing I can suggest to you is be in charge of your own care. If your doctors plan doesn’t feel right, get a second opinion.

As for your a1c, red blood cells live for 3 months. They become glycated when they are first made and then slowly die off.

So checking your a1c more often than every 3 months is not going to give you a clear picture.

If your day to day numbers are good, then you can decide to wait before increasing your meds.
Just because your doctor decides something doesn’t mean you need to do it.
You can say “ hey can we wait until 3 months before we increase my meds because my daily numbers are good”
A decent doctor will take your lead.
That being said, if after 3 months of your new meds and new diet and you are over 7% a1c, then you should probably increase your metformin.

Also know that insulin causes you to be hungry. That’s why metformin is a good choice, it reduces your need for insulin so your body needs less and therefore produces less. And you will be less hungry.

The more you exercise the better it will all work out because exercise is a natural reducer of insulin resistance.

So instead of dreading it, you can celebrate your reduction and keep working at being healthy and see what happens at the 3 month mark. Then reassess.

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Are you still on the prednisone? Since prednisone is a steroid it can raise blood glucose (BG) by quite a bit. If you are still on it then you may need the extra help from the metformin to reach your goals. BTW, metformin is the mildest diabetic medication and unless you are having stomach issues with it then there is no shame or harm in needing more or needing to go to a different medication or insulin.

You are doing great! Your Dr. just wants you to get to the goalpost faster. Keep up the good work.

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@Timothy Thank you. I think I needed to hear this. Ever since the beginning of April even before my diagnosis, I have felt like my health was completely out of my control. I have an appointment with my regular doctor a week from today, and maybe I should take a deep breath, keep doing what I’m doing, and talk it out with them at that appointment.

@Firenza I stopped taking the prednisone before my diagnosis. I was really upset about what happened with the prednisone sending me to the ER, but my doctors have told me that prednisone can raise blood sugar, and what was happening is my blood sugar was probably already significantly elevated, but I didn’t know until the prednisone elevated it enough for me to experience symptoms. They said I could have gone a lot longer without knowing.

I think when I first started taking Metformin, I felt shame. I had been working so hard to turn my health around and be healthy and strong. I’d lost weight recently and built a ton of muscle, and it just felt like what I’d been doing wasn’t helping or working. But I let go of that shame after I started taking Metformin. I stopped waking up in the middle of the night to go to the bathroom. I started waking up before my alarm feeling well rested when I normally snoozed my alarm for 30 min. I can actually focus on work without having to be extremely disciplined and force it. My energy levels have exponentially increased. It has helped me so much. I had very mild stomach symptoms the first couple days, but haven’t had any other issues since then.

I know that all of my providers want me to succeed, and they’re cheering me on. I know that they wouldn’t do something that they didn’t feel was in my best interest. However, they’ve said that the dose of Metformin I’m on is not enough to significantly improve my a1c, but it changed so much how could it not have affected it? Also, the clinical pharmacist had told me before that if I got my a1c below a 10, then that took out the need for a second medication. But then the other day, they said I needed to increase my Metformin dosage, and if my a1c was below a 7 in 90 days I wouldn’t need to add in Ozempic (both the doctor and clinical pharmacist have suggested I start Ozempic when I get ramped up on Metformin). To be honest, I haven’t decided how I feel about adding in Ozempic or not after a changing goalpost. I think that’s a big part of what’s confusing me.

My husband has suggested that I could start by adding one more 500mg pill, and if it effects me too much or in a way that I’m not comfortable with, I can take the dosage back down. He’s not wrong. Idk why this feels like an all or nothing thing to me.

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Your recent bgs indicate the current dose is working well. The higher bgs may have been higher carb meals, and you will learn how different foods impact you. Are you doing 1-2 hr post meal bg checks ? Highs after meals would indicate different food choices or more meds.

Some follow the method of “eat to your meter”.

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I was checking every 1 and 2 hours after meals at first, and in the morning, but two of my health care providers suggested that was a little much… It ended up being like 8 times a day some days. So, I’m testing in the morning, and after one of my meal times per their advice. I pick a meal where the combination of foods or portions are different than something I’ve had before and tested after, or if I eat something new. I always test after I’ve eaten at a restaurant. I also test if I’m not feeling well to make sure it isn’t blood sugar related, or if I feel any hypoglycemic symptoms. Which is weird because I seem to get those sometimes when I’m just having a ‘low-to-me’ blood sugar reading, but it isn’t a reading that would be considered low. I’ve been told by one provider to treat it as if it’s an actual low blood sugar, but another provider told me I just need to power through it if my blood sugar isn’t actually low.

The advice you’re giving to eat to your meter is definitely great advice because I have found some meals that I thought were healthy ended up spiking my blood sugar, and then I can take that information and modify the meal, or just avoid it in the future. I’ve also read that I shouldn’t eat watermelon or potatoes, or sushi (or insert other potentially non diabetic friendly food here). However, if I structure the meal correctly, I can stay in my target range and still have these foods. Just maybe not in the ways that I used to. There’s still a lot I feel like I can’t have, but I feel like I’m trying to work things in when I can because this is a long haul not a sprint.

The AM blood sugar reading is the most confusing one for me. It doesn’t seem to relate to anything, but I have noticed as my post meal readings get lower, the AM reading is starting to follow it.

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Great!!!

Another option is to use cgm, probably Libre, occasionally, or when your schedules, meals are more hectic or changing. It helps with seeing how fast your bg changes, with the variation of meal mix of carbs, fats and proteins. Also helps see impact of exercise, stress, and the fact that sometimes BG rises for reasons that aren’t obvious.

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Hi @Heybeth

A very similar situation happened to me last year, when I discovered I was a type 2 too :slight_smile:

First, be proud you are changing. As a disease that requires sometimes big lifestyle adjustments, we need to be mindful of what we eat and do.

Just as I discovered my diagnosis, I looked for a nutritionist to follow my endo appointments and I started doing exercise. Light exercise. I walk four times a week for half an hour and do Pilates once or twice a week. I also radically changed my diet - do not eat any sugar, white flour or white rice and do not eat junk or fried food in general.

During this year, my treatment has changed. In the beginning, I needed insulin as well something similar to Ozempic, called Victoza. I was very confused at what was happening with my body and what was being given to me and why. I took a lot more medications last year and take a fourth of what I used to today because I increased my insulin sensitivity due to all these changes. I only take the minimum dose for Victoza now and my endo already suggested I could stop that too, but I politely said no :stuck_out_tongue_winking_eye:

What I’m saying is it is ok to be confused and disappointed - it’s part of package with life - and maybe you’ll need to adjust somethings over time to have better health. Talk to your endo, If you do not have one, try to find one. And if you can’t get to one, know that things take time and they don’t necessarily happen over a month or so. Developing more insulin sensitivity may take a while (and that’s ok!).

If you are checking your blood sugar every day a couple of times a day, you will learn how your body responds to food and stimuli - whether exercise or sleep, moods, other medications, etc. If you are running a bit high (and that constitutes a somewhat subjective issue), you can adjust your next meal and focus veggies and protein and fewer/no carbs. And perhaps this medication will not be enough for now, maybe it will. There is no one size fits all, (un)fortunately. It’s important to have a good doctor who you can trust.

My life is so much better today. I am (maybe?) glad this happened to me as I could learn to prioritize myself a bit more. You found people who you can talk here so that’s already a good thing :wink: To try to make you feel a bit better, it’s also ok if you add one more med as well. It’s part of an ever-changing treatment that you will learn to understand and embrace.

ps: sushi rice is seasoned with sugar. I also love Japanese food! today I eat sashimi, miso soup, and some non-starchy salads my favorite restaurant has.

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I don’t think I considered that the increase in medication could be temporary, and that I could come back down off of the medication once I reached my goals. I also really appreciate that you listened to your doctor, but told them no because of what you feel works better for you. Sometimes that doesn’t feel like an option to me.

I don’t have an endo, but I thought type 2 diabetics potentially don’t need one? I’ll talk to my regular doctor about that when I see them next week.

I did not know that, but I knew it wasn’t great. I’m trying to figure out how to work in the things I love into this new normal. The first time I had sushi after diagnosis, it did spike my blood sugar, but the next time I had it, I split one roll with a friend instead of us sharing multiple rolls, and I paired my half a roll with a salad (dressing on the side), and my blood sugar was fine after. It could have been better, but it was within my targets. If I have to give it up all together, I will, but for now, it has been okay.

It feels like there’s so much I have to give up.

I feel this, and some days I feel like this, and other days I’m overwhelmed, and wish I didn’t have to deal with this.

Thank you.

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Oh, you have no idea how much I relate to all these feelings.

But I will say we also need an endo. The myriad of treatment possibilities may be too much for a general doctor to understand. We may use all that a type 1 uses, basically. An endocrinologist will certainly help you navigate this. The sooner you go, the better. Maybe the first you see will not be a great one, but finding a doctor you can trust will make you feel much better about yourself and diabetes too.

I also feel like I have given up on everything I like sometimes. I’m very into bread, so what I do is have full wheat. I eat healthy today, I don’t have a restrictive diet. But that’s what I think. People sometimes say 'but you don’t /can’t have this or that either?" and I just say thank you and we move forward. I chose to have a healthy life and never come back to where I was when I found out.

On your end, you’re doing all you can. Start going for walks or choose some kind of exercise that you can keep as a routine at least 3 times a week. This is so important. With that and a balanced diet, everything else falls into place. If you have to take this or that medication, it’ll just be a part of your life.

And don’t forget that diabetes is now one little (maybe big?) thing of who you are, not everything.

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@Heybeth I’m a bit late to the discussion, but as a long time type 2 I thought I would chime in. First the thing about sushi rice and added sugar, for me to eat rice, I may as well eat a equal amount of glucose. Rice quickly spikes blood glucose levels in me.

If I understood correctly you were diagnosed recently (4/28) with an HbA1c of 11.7% and less than one month (5/18) 9.0%. It may be the prednisone that causes your elevated blood glucose levels. All corticosteroids, whether naturally secreted or from drugs will cause elevated BG in everyone, diabetic or not.

Having a nearly 3% drop in HbA1c in 20 days is remarkable. Metformin does not stimulate the Beta cells to secrete more insulin. It works in 3 ways, 1. Slightly limits the amount of glucose released from the liver. 2. Slows the digestive system a bit. And 3. Increases cellular insulin sensitivity a small amount.

I see where your meter readings are 115 to 125mg/dl. When are you testing? Fasting BG is under 100mg/dl, while postprandial BG is in the range of those numbers for non-diabetics. Some people just do random testing, but that is rather confusing.

My suggestion is to continue with the Metformin dose as it won’t harm, unless you get GI symptoms, they are common. I have them, but continue to take it and have for about 15 years. Don’t beat yourself up.

It is quite possible that you were misdiagnosed with type 2 diabetes mellitus. Prednisone on top of the stress of tachycardia and hospitalization are enough to elevate anyones blood glucose levels. Give it time, see what a 90 day and 180 day HbA1c shows.

If there is no real improvement or it ramps up, then seek a referral to an endo.

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@Heybeth I do want to reiterate some things other people have already said.

A1c is a 3 month average and while the past 30 days before influence it more than what is going on for the full 90 days before, it is an average still of the 90 days. If you have managed to drop that much that quick, your Bg levels have to be much lower for those past 20 days already. If it was possible to have an A1c of only 30 days I’m sure it would be much much lower.

For example an 11.7 is a 230 average for the 3 months. 20 days later it had already dropped to an average of 182. While up front that represents already a 50 point drop in average level, it actually represents a lot more to get that as an average for 90 days when you had only been trying to correct it for 20 days… It sure seems like you were getting pretty close to normal.

So stop being hard on yourself, it was too early to test your A1c again. Go by your meter readings.

Another thing we all are familiar with, there is a huge variation in treatment of diabetes and some doctors and endos are jerks. Go with your gut. The first endo and GP both said I couldn’t be a type 1 when I asked. And I asked a few times because I had an uncle that was a type 1, but neither ever tested me. I changed GP’s who sent me to a new endo who tested me without me even asking and I was finally properly diagnosed right. And the DE probably knows a lot more about diabetes than the clinical pharmacist.

The other thing I want to tell you is how much steroids can raise your blood sugar levels, it has even been known to cause diabetes. There are some type 1 diabetics that are only diabetics because steroids caused so much damage to the pancreas. Sometimes people can recover over time, in your case it might have been a very temporary huge increase of blood sugar levels. But it also could have exacerbated something that was just starting to happen too.

So test, first thing in the am, before you eat, 2 hours after, before bedtime. I would do that for a couple of days…then maybe wait a few days of doing a morning reading so you still keep some kind of eye on it. Then maybe repeat the all day testing. And judge how you are doing. But it sure seems like you are doing great. Keep in mind you might have a huge reaction to steroids, I do, I avoid them, but if it’s an emergency they can’t be beat for what they can do. I always tell my doctors I won’t take them…unless it’s an emergency.

Give everything 90 days and get a new A1c test done then.

.

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You need to be your own advocate - that being said - I was misdiagnosed as type 2 and I really am a LADA. I have no idea what your medical history is, and comorbidities you may have - but just something to think about.

What you can see from the forum is how individualized everyone’s care is. Your journey will be that way too. Educate yourself and ask questions. If you need to, change doctors. Get a cgm. The data a cgm gives is so valuable and can give you lots of insight into your body patterns.

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hi Beth, I was diagnosed type 2 in Nov 18’ after 5 Strokes. I was already aware of how to treat Diabetes from growing up with my mom who was a type 1 Diabetic. my A1c was at 12.4 and I weighed 215. I didn’t take mine seriously and ended up in the hospital with a high blood sugar up 435 after I decided to shock my system with a low blood sugar of 40 by eating a whole bag of Swedish Fish. This was the wake up call I needed. Since Jan 20’ to Feb. 22’ I dropped it to 6.4 and lost 65lbs. I believed it was all me :smiley:…But 3 months later I found out I have type 1.5(LADA) and it assisted my weight loss. I have now regrouped and began a new journey. I was blessed too find so many helpful responses to questions I had in this forum. Don’t feel scared there are many doctors that will give many opinions on diagnosis. Always remember its your body you know how you feel during different situations. If your in tune with body it will follow your guidance. Good luck, and God Bless :pray: :pray:

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Wow. I just want to say thank you for all the responses and everyone sharing your stories. This has given me a lot to think about. I hadn’t considered just how much the steroids could have affected me. I have wondered how they knew it was type 2 and not something else. How do I find out if it’s another type? I know I have more questions, but I’m going to try to just sit with all that information and digest it.

Seriously. Thank you for being vulnerable and sharing your stories with me. I have felt really alone and like my friends and family don’t get it. I am nearly in tears with gratitude.

Someone did ask when I’m testing, and I test in the AM and 2 hours post meal, but only one meal a day unless I eat something new or when I eat at a restaurant. I always test after restaurants. I also test when I don’t feel well to make sure it isn’t blood sugar related.

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There is a suite of autoimmune testing that can be done to determine whether or not you have type 1 or 2 along with c-peptide testing which falls in step with your body’s own insulin production. High c-peptide means insulin resistance (ie. type 2) low or low normal c-peptide indicates type 1.

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@Firenza Thank you. I have an appointment with my primary doctor on Friday. I’ll ask about this.

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While not incorrect, I wanted to give a add some information regarding c-peptide test.

A healthy persons pancreas makes a molecule called pro insulin.
That breaks into two molecules. Insulin and C-peptide.
Because many of us inject insulin it’s very difficult to figure out weather the insulin in our bodies is our own or injected.

So we measure c-peptide which is made in equal amounts to insulin.

This way we know how much of the insulin in your body has been produced instead of injected.

So C-peptide test indicates how much insulin your pancreas is making.
If it is high and your blood sugars are high, then it indicates insulin resistance.

If C-peptide is low, and you have high sugar, it suggests you have some loss of beta cell function( usually type1) but also trauma to your pancreas could do that.

If your C- peptide is zero, you have no insulin production. This can happen with type 1 or type 2 who have lost their beta cell function by overworking their pancreas. Or removal of your pancreas.
If your c-peptide is high and your blood sugar is running low, and you are not injecting insulin, that suggests pancreatic cancer as a possibility.

There are also antibody tests that can really narrow it down.

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Yes, usually for a type 1 diagnosis you get the Antibody tests and a C-peptide test. But if it’s steroid related an antibody test probably would be negative unless you were already on the way to getting type 1. But a C-peptide test tells you, at the time of the test, if your pancreas is making insulin. And how much helps tell what is going on. Low or low normal is a sign of type 1, high or high normal is a sign of type 2.

Permanent or longer term damage can come from steroids, or some other drugs, or even in some cases certain viruses have temporarily caused type 1 and type 2. For example like the sars virus and maybe covid. But in these cases antibodies for type 1 aren’t necessarily present.

And I have a feeling that damage from cases like that, it can cause a variety of C-peptide results, depending on how much the pancreas was traumatized. I had a dog develop type 1 after being put on steroids for a stomach condition. Her sugars could be all over the place sometimes, even with the same food and the same amount of exercise. I always thought that maybe sometimes her pancreas was still trying to work and make some insulin off and on.

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For anyone wanting an update, I saw my primary doctor yesterday. I showed them my meter with my readings for that day and the 7 day (122), 14 day (133), and 30 day (148) averages. They still are highly suggesting that I up my Metformin dose. Something I realized though is that all my blood sugar readings are in the target ranges for a diabetic. My AM readings are in the 120s, readings 2 hours post meal have been 105 - 130ish, and I get a rare reading in the 150-165 range 2 hours after a meal if I ate something that had more carbs than I realized or something. He still wanted me to increase my medication. His reasoning was that when I was diagnosed and had an a1c of 11.7 that he really should have put me on insulin, and that I should consider other countries’ standards for blood sugar as well. I’m not against considering other countries’ standards, and I do hope to get my blood sugar into non-diabetic ranges, but I also feel like my blood sugars have improved enough that we don’t have to treat this like an emergency, and we should be happy with the progress. This doesn’t mean I’m content with my readings. It means I’m content with my current treatment plan, and I feel like this is a marathon and not a sprint.

I told him to pause for a second and have a collaborative conversation with me. I told him I’m not against taking medication, but I am for data driven decisions… I’m a software engineer, I love data. I asked him how he thought my current treatment plan was working, and he said as good as he could expect. I asked him what was the basis for the decision to double my Metformin, and he said ‘the guidelines’. I said that all my tests were in my target range, but also my blood sugar averages were clearly showing a downward trend.

I asked him how he felt about waiting until my next a1c test before we made a decision to increase medication, and he finally agreed to that. I asked him if there were any red flags or any dangers he saw to waiting, and he said none.

So, I’m just completely confused as to why they’re pushing the extra medications. Doesn’t make any sense, but I did get the outcome I was hoping for.

He also said that I didn’t need an endocrinologist because he could prescribe anything I needed for my diabetes management. But it kind of sounds like based on what I’ve read here that I should still consider seeing one. He also didn’t seem very interested in entertaining the possibility that it was anything other than type 2 diabetes.

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