Diagnosed with T1 last week - feeling overwhelmed!

Hi! I’m new to the site as of today, and this is my first time reaching out. It’s nice to have places like this to find people who have traveled this road way longer than I have!!! My story is kinda crazy, so sorry in advance for the long post!

I was told I had pre-diabetes (presumably type 2) and seemed to be doing great controlling my A1c with diet and exercise for almost 2 years, then my numbers went crazy last July! Having worked hard to successfully keep things under control without the medication, I attributed this spike to a steroid regimen for another issue, and ignored it for a while. But when the fatigue, blurry vision and frequent urination became almost too much this past January, I made an appointment with my doc. I saw him on Feb. 9th, he ran my A1c, and assumed it was type 2 and based on my history and symptoms, put me on metformin and Invokana. The day after my appointment was the first day with a blood glucose meter, and my fasting bg was 425–yikes!!! After 2 or 3 days on the meds, it had dropped down to under 200, but by day 4 I started getting really sick. After 2 days of severe nausea, cramping, extreme fatigue, throwing up and not being able to eat, I googled the side effects of the meds. I had been on metformin before for a brief period and had no issues so didn’t think it was that, but found that one side effect of Invokana is ketoacidosis. I had no clue what that was so googled it too. Seeing I had a lot of those symptoms, I asked my husband to run and get me some ketone strips. Well, my ketone level was extremely high, and as sick as I felt it was time to go to the ER–worst Valentine’s day EVER!!!

Diagnosis was DKA–spent 24 hours in the ICU, and 3 more days recovering in the hospital with IV fluids, insulin and electrolytes. My bg going in the hospital was about 160, which is not all that high so be careful those of you who are on invokana because apparently you can go into DKA on this drug without really high bg!!! My CO2 blood gas level was a 7, which I was told is really bad.

I believed it was the invokana that caused my DKA (which it may very well have been), and my regular doctor still thought I had type 2, or maybe 1.5, which he explained to me. He wanted to get my results from the ER and confirm the DKA diagnosis, which he did. It took until April 7th before I could get in to see an Endo, and last Friday they called me with the definite diagnosis of type 1 diabetes after running the necessary blood tests. Not only that, but my thyroid is acting up. I have Graves disease (diagnosed at 21), and they told me I’ll have to get back on my meds for that. They also said my vitamin D3 is low and to start a supplement.

For the diabetes I’m on 1000mg of metformin twice per day, and 26u levemir at night. From the time I was in the hospital to the time I saw the endo, my A1c had gone from 9.7 to 6.7, and I haven’t had a bg over 140 in over a month (mostly #'s stay between 100 and 120), with only one time dropping to 67 and I had to eat something. So good results so far since I got my insulin dose to where it needed to be. I have novolog, but my doc said only to take if my fasting bg is over 200, which it hasn’t been since leaving the hospital. I’ve also tried to be very good with counting carbs and eating smaller portions, though far from perfect. And, I’ve read a LOT about diabetes in the last 2 months, which is why I know some of these spiffy terms LOL. Having already lived with one autoimmune disease (Graves) for 13 years, I’ve learned how important it is to understand what’s going on with my body and how to deal with it.

The last month and a half has been nuts!!! I’m just wondering how this happened? How all this works? Will my insulin requirements creep up over time? Is there a way to reduce the daily dose? Is there any way to avoid eventually having to take the novolog (sliding scale) injections? How many times and when should I really check my sugar every day (I’ve been doing 2-3 times)? Some people I’ve seen on here check it way more than that. Was the first 2 years of “pre-diabetes” really what people call a honeymoon period? I’m just a little lost, and lot overwhelmed :frowning:

Thank you :slight_smile:


Hello and welcome!!!
First of all, take a deep breath! Everything is gonna be fine. Many of us on this page and elsewhere are living proof of that! Diabetes can get messy at times, but if you learn about it and your body, it is totally doable.

You have a lot of questions, and that’s great! Keep asking them! Learning is the best way of dealing with this condition.
First of all i allow myself to remark that the treatment you are receiving at the moment seems pretty weird to me. that is for a lot of reasons:

  1. you are on Metformin. While this is not totally off standard treatment and i understand you have been on it for a while, T1s usually are not treated with it, as it does not treat the source of the problem, which is no insulin production. it lowers the glucose production by the liver, and while this lowers your insulin requirements, there is actually not really a reason for you to want that. your insulin requirements are healthy, just the supply is off.
    does this make sense?

  2. you are on a sliding scale, which is pretty outdated in modern Diabetes treatment. Most people nowadays who are not on a pump are on MDI, which means Multiple Daily Injections. The word already says it, it calls for multiple injections a day, so no skipping that NovoLog. :wink: It calls for a basal insulin like Levemir once or usually twice a day, and a short acting insulin like NovoLog for meals (and corrections). So taking that NovoLog makes sense, and should not be prevented/avoided (unless you decide to start on a really low carb diet or dont eat carbs at all, the latter definitely not a good idea). I would definitely talk your insulin regimen over with your Endo, and see if he has similar opinions about that.

  3. while checking your BG 3 times a day was probably ok while you were still not on insulin, i would recommend you checking it more often now. i check mine between 5-8 times a day, and there are people who do it even more often. i would definitely start looking into post prandial numbers (BG taken 1-2hrs after a meal). i would suspect that those numbers with you could be quite elevated, another reason why maybe starting mealtime insulin (NovoLog) might be a good idea. Keep in touch with your Endo about that decision though.

Take your time, dont make your changes too drastic! what works now, might not work in the future and vice versa, and that’s fine!
Some resources i would recommend reading in the next few weeks/months (again, one thing after another):

  • Book called “Think Like a Pancreas” by Gary Scheiner (this really recommended!!!)
  • Book called “Using Insulin” by John Walsh
  • this discussion by our dear Member @Melitta, really good stuff in there!!

If you are looking for a specific topic, use the magnifying glass at the top right, there you can search for different key words and can find great discussions.

All the best and keep us updated with changes and other arising questions!
Hugs, Angela


Thank you swisschocolate! Lots of useful info, and things to think about. I also thought metformin was more for type 2 diabetes, but when I asked my endo said to keep doing what I’m doing since it seems to be working with my A1c coming down and bg looking ok. I will definitely talk to her at my follow up appointment about the MDI. The sliding scale came from my regular doc, so maybe he’s just not up to speed. Love the book suggestions…I’ll check those out :slight_smile: And will start checking my bg more to get a better picture of what’s happening overall. Thanks again!

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Metformin used to be prescribed almost exclusive for T2. In recent years it has been recognized that it can be helpful to T1 also, but only as an adjunct to more specific therapies, not all by itself. Metformin can reduce the amount ofglucose secreted by the liver. It cannot replace missing insulin.

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Welcome to The Club No One Wants to Join (T1) and also to TUD, which is actually a pretty wonderful place for members of that other club. @swisschocolate/Angela covers it really well, but I would second her on testing more often. You need more information than just a couple of tests a day to really know what’s going on with your post-prandials, and that information would have a bearing on deciding whether to learn how to do MDI with carb-counting. It may be that you’re in the “honeymoon” period now–i.e., still producing enough endogenous insulin to keep things even enough with your sliding-scale, but generally that goes away after a while so it’s good to get used to keeping an eye on it.

Metformin is not that unusual a choice for T1s–my endo put me on it because I was struggling with “dawn phenomenon” (this really common thing where your BG starts to go up toward waking time, in some cases enough to throw your control off for half the day) and it helps with that. I was upping my overnight insulin to rein it in, which is kind of dangerous. But if that’s not an issue for you, there may not be any reason to take it, especially if it causes you stomach problems (it doesn’t for me). This is another thing that doing some overnight tests might help to identify. No fun to get up at 3am to jab yourself in the finger, but it’s sometimes necessary to find out what’s going on overnight.

Hope you’ll keep us posted as to how you’re doing as you adjust to this. It’s kind of a pain, to be sure, but the tools are SO much better than they were 30 years ago when I was dx’d, emphatically including social network sites like this (I don’t think I even met another T1 for my first 20 years!) that you should be able to live the life you want without it driving you too crazy. Glad you found us!

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Sorry to hear it took a trip to the ER to get correctly diagnosed but it sounds like you are coping with this really well! I was put on a sliding scale at first too, I think it is just an easy thing to do until patients learn how to count carbs and figure out an insulin to carb ratio.

Some people on ketogenic diets work their way to only long-acting insulin but I would say that is not the norm. There are some good low-carb recipes posted in the Food category!

I usually test before and 2 hours after meals and at night, so around 7 per day. Sometimes more if I am driving, exercising, or just feeling weird!

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Hello there! Like you, I’m also a Type 1 (though my Endo is still unsure about it; & he is yet to recommend further tests to verify his Type 1 assumption) & Graves disease sufferer. I was initially diagnosed as Type 2 3 years ago & was initially put on Metformin. After a month of taking Metformin, my numbers didn’t improve (my blood glucose levels were always above normal) & the weight loss continued so my Endo put me on Glimepiride (Norizec 3mg), Glitaz, & Glumet XR 500. With meds, regular check up, plus diet & exercise, my numbers improved & eventually, my Endo removed Glitaz from my list of meds. After 3 mos though, I’ve fallen off the diet wagon & started skipping my scheduled check ups. As a result, my bg levels went up again & that trend went on for 2 years :frowning: During that time, I started getting bad skin infections.

Just recently, a month ago to be exact, I got hospitalized for a bad throat infection exacerbated by diabetes & Graves. :frowning: My new Endo put me on MDI (Humulin R 3x/day, Lantus at night) & so far, my bg levels are within the normal range most of the time (with the exception of severe hypo episodes). He had lessen my dose of insulin twice already because of frequent hypo episodes & so far, the latest adjustment is working well on me. With regards to blood glucose monitoring, my Endo advised me to do random testing (at least 1x a day), & even said that it is not necessary for me to test every now & then (but I check my bg at least 2-3x/day especially when I’m feeling kinda off ). Perhaps its because of the high cost of test strips here in the Philippines. :frowning:

Looking forward to spending some time here, reading through the posts & picking up some useful tips & coping skills that will help me handle day-to-day challenges brought about by this mind boggling disease. :slight_smile:

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Welcome to a wonderful, thoughtful community. Ask away and @swisschocolate 's advice is on point.


There is one thing here that makes lights flash and bells ring, at least for me.

If you are using insulin (4x/day, I think you said), testing once a day just doesn’t make sense. In fact it’s genuinely risky. There is an enormous number of variables that influence the body’s response to food, insulin, the environment, and everything else, with the result that BG levels can vary—either a little or a lot—even when food and insulin are exact and predictable. This is never more true than when a particular medication or pattern of management is new.

As an insulin user, especially a new one, you need to be testing more often than once a day. The fact that you were having “frequent hypo episodes” is a good illustration of why.


Wow! Another person with Type 1 + Graves! Thanks for commenting! :smile:

Personally, any shock to my body sends me into hyperthyroidism mode–so I’m pretty sure the DKA did it this time, seeing as how I was tested a month before being in the hospital and my T3/T4 and TSH were fine, and now are out of range. Different things in the past have triggered my Graves–pregnancy, stress, stopping certain medications, etc. Graves is definitely it’s own crazy roller coaster even without diabetes added into the mix!!!

Even thought I’m very new to this, I can see where David is coming from regarding testing bg more times per day. After getting the advice yesterday that testing 2-3 times/day was not enough, I’ve testing 3 times already today and it started at 101 this morning, then went up to 149 about 1 1/2 hours after breakfast, and back down to 94 as of a few minutes ago. The 149 was kind of surprising to me because I don’t normally see numbers that high (mainly because I don’t always test that soon after eating), which tells me I might need to talk to my doctor about taking some insulin with meals. Just my newbie take on that :wink:

Just curious–has your doctor said anything about how the diabetes and Graves interact?

Thanks for the comments!

Question–what kind of numbers should I be seeing at 1 1/2 - 2 hours after eating? I don’t normally test that, or if I do I forget and it’ll be more like 3-4 hours after I ate and numbers look good. Today I took my bg 1 1/2 after eating breakfast and it was 149, which is definitely on the high side compared to what I’ve been seeing (101 first thing this a.m., and 94 a few minutes ago, ~ 4 hours after breakfast).

Is the goal more for bg to stay the same, or is it ok to fluctuate within a certain range?

Thanks DrBB! I am wondering if you are right about this being my “honeymoon” period. I got a copy of my lab work yesterday, and the c-peptide level was out of range/low, but wasn’t 0, so maybe that means there’s still some insulin production going on in here?

Starting to test bg more today–going to try to get 5-8 readings per day so I have a better picture of what’s going on when I see my endo next.

I have noticed that after eating too much sugar I very quickly get in a horrible mood, and feel lethargic. Is that normal?

Hi Angela! So great tips! I did notice my bg spiking today to 149 about 1 1/2 hours after eating breakfast (101 before), so you may be right about needing some insulin with meals.

I read some of the discussion you sent me for @Melitta, which said it’s important to have the antibodies test done to determine a diagnosis. I called my endo and asked if they tested for that because on the copy of my lab work I didn’t see it. They said they test c-peptide levels, and that’s how the doctor makes her determination about the type of diabetes. She didn’t say they did the antibody test, or offer it as an option. I guess I’m getting mixed info about this, and want to make sure my endo is doing what she’s supposed to in diagnosing my diabetes.

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A non-diabetic individual’s blood glucose will usually peak somewhere between 60 and 90 minutes after eating. It will generally return to normal by the 2 hour mark. As with everything else in this insane disease, those numbers are approximate and can vary substantially from individual to individual and situation to situation. But they’re basic rules of thumb. Ideally, you want to be at or below 120 by 2 hours after eating. As far as actual numbers go, the specific peak isn’t as important as the fact that you are back down to something resembling normal around the 2 hour mark, That’s a good goal to aim for. Like everything else, it improves with practice and experience.

Entirely. Some people experience symptoms ranging from mild to severe when they are high. Sounds like you might be one. Nothing out of the ordinary about that. :smiley:


Concerning the right diagnosis i wouldn’t worry too much atm. I think she meant this more for t2 who could be t1, but havent made any tests at all yet. The dka you had a few weeks ago is already a big indication for t1, as well as the mentioned cpep test.
Plus: the diagnosis doesnt change much anyway in your treatment. If i were you i would even want to stay in that t1 category they put you in, as it is easier to get insurances paying for cgms and pumps later on when you are t1.
You can of course demand further testing, but that shouldnt be your number one priority atm.

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@swisschocolate makes a very good point about insurance. As an insulin-dependent T2, I cannot get an insulin pump or a CGM unless I pay for them out of pocket, and that just ain’t gonna happen. T1s have a much easier time in that one respect.

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Hi Kerland: You have a diagnosis of Type 1 diabetes, so you really don’t need to do the autoantibody testing (and as others say, it is good to have the T1D diagnosis to get things such as the CGM and insulin pump). I advocate autoantibody testing for those who were diagnosed as having Type 2 but question the diagnosis. I know it is overwhelming at first, but you are doing great! Welcome!


Great! Thanks so much for elaborating, and for the warm welcome :blush:

That will always be one of the most memorable days of my own life, and far less pleasant a memory than the other ones.

I spent a long time afterward hoping I wouldnt need very much insulin, considering it a victory when I was able to take less, a defeat when I needed to take more, etc. the reality is though that as a type 1 diabetic you will need insulin, and your requirements for it will likely go up as you lose the ability over time to produce your own… In hindsight I’d encourage you to view this as not a bad-thing, but just the reasonable expectations for how things will work out-- I think that would have been a more healthy mentality for me to have had in my own case. But things still do work out, I know exactly how overwhelming this feels but can also tell you that life will go on. This is not the end of the story of your life, it’s just an unexpected plot twist.


Welcome, we always love to see new people here, but are sorry to know another person is strapped with this disease.

The good news is that you are not alone! And you can be healthy and perfectly happy. Life has changed, but it doesn’t have to be bad.

Good luck to you and happy thoughts!