Newly Diagnosed - 11.6 A1C

Welcome to TUD @Adiina! This really raises a few flags for me. Non specialists (and even some specialists) tend to assume that if you’re out of your teens, you must have Type 2, and that is not a correct assumption. In fact it flies in the face of the whole reason for adopting the “Type” nomenclature in the first place, which was intended to separate the age factor from diagnosis especially in the case of the auto-immune kind that used to go by the term “juvenile.” It is the case that Type 2 is more common among adults, but it is not the case that Type 1 is restricted tochildren and adolescents. That is an entirely outmoded idea that continues to persist decades past its sell-by date, with the result that there are any number of Type 1s (lots of them on this site) who were slotted into the Type 2 box and incorrectly treated for months and even years before being correctly diagnosed.

And frankly those numbers and symptoms look suspiciously Type 1-ish to me. The very high 500+ BG, the weight loss, the onset over a relatively short time, the vision and other symptoms—those all sound like what I went through, particularly the fast onset (about six weeks), when I was dx’d “juvenile” (as it was still called) at age 28. I was dx’d correctly, but many are not. Doctors can be very resistant to challenges and doing additional testing, but there are tests that can determine whether you have Type 1, and I would strongly urge you to have them done if only for peace of mind. You don’t say whether you were referred to a endocrinologist or diabetologist, but given how little assistance or aftercare you were given I’m guessing not. Even for Type 2, this is pretty shoddy, frankly, and if you actually have Type 1 it could be dangerous. I would highly recommend getting such a referral, and getting the antibody tests that can determine things much more reliably than just “Oh, you’re an adult, type 2!” if that has what happened.

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Trust your gut!

There are many things you can do in addition to meds.

I think most important is self blood testing, and also ketone testing since yours was high.
Test BGs before and after meals, and log it along with what you ate. Track how many grams of carbs is in the meal. Then look for patterns. Hopefully BG numbers start going down, and each meal results in less increase after meal.

Continue to check for urine ketones until clear. As your BGs go down, the ketones will go down.

If no improvement, you may want to consider referral to endo, and possibly need insulin at this stage. Your current doctors advice is typical, but not very aggressive.

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No, I was given no referrals. Just told to take the Metformin and come back in 1 -2 months.

Uggh. So here’s the thing: that’s a pretty high ketone level. High ketones running out of control lead to diabetic ketoacidosis (DKA). The threshold for DKA is 180, so >160 is nothing to mess with. Symptoms include nausea, panting breath, vomiting, and sweet/chemical smell on the breath (think acetone). If the Metformin seems to be working, fine, but I would test a lot, at least these first few days, to make sure. And if you find you’re having those kinds of symptoms, especially vomiting, you need to get to the ER. Really don’t want to panic you, but this is nothing to mess with so you should be aware of what it means if it happens.

Meanwhile, try to keep your carbs to a minimum until things stabilize. That includes starches (pasta), bread, potatoes and the like, not just cake and ice cream.

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If that happened to someone close to me, honestly I would take them to urgent care or the ER to get an immediate referral to an endocrinologist and possibly some insulin right away to get out of ketosis, because that sounds like you are at risk for DKA. You absolutely should not wait 1-2 months like that, and I’d be surprised if metformin is sufficient to treat someone in your situation. Like others, I would highly suspect Type 1.

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indeed. I’m pretty sure I remember TuD having some type 1s who were diagnosed in their 50s and even 60s.

please watch closely for those signs of DKA. It’s nothing to ignore. DKA kills.

let us know how you are doing.

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I mean, even if their dx is correct, how long is it going to take Metformin to bring down a BG that high (>500 usually meaning “Sorry, you’ve maxed out the meter”). Why in the world wouldn’t it be correct procedure to use insulin dose to bring it down to a reasonable number over the next several hours in any case? With those numbers this whole thing just seems like a classic case of running on Adult==Type 2 autopilot.

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Wow, I agree completely. My thought here is insulin! Doesn’t matter whether the diagnosis is type 1 or type 2, right now it is blood sugars and ketones that are emergency room high. How does anyone think a pill will bring those numbers back into a safe spot! I am appalled that this is still going on!

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Welcome @Adiina!
I say trust your gut! You know what is right or wrong with how your body is feeling. And with those numbers and those symptoms, I am surprised you are functioning well at all.
So my suggestion, trust your gut and get into see an endocrinologist. Age has nothing to do with what type you are. There are many youngsters with type 2 and many adults with type 1. I meet a 73 year old woman who was thankfully just diagnosed with type 1. Please get in soon, these numbers could spiral out of control quickly.
Please keep us up to date! I am hoping you can see someone now. This is when a good PCP comes in handy that can push to get you seen. Or another way is emergency room but wow, that is an expensive way to go. Good luck!

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Just to be clear, the >500 glucose is was what was spilling in my urine along with the >160 keytones. They didn’t even test my blood in office once they received those numbers.

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I was dx almost 11 years ago with an A1c of 12,0 FBG 360. Etc. age 63 not obese and active
But My doctor had me in for a 1 hour appointment to explain the situation.
Recommend an extensive diabetes education program, including eating and exercise. Concluded that because of age I was most likely T2 but also could be T1. Put on Metformin
(Note this was also 2009, so a lot of medication has changed including insulin pens. )
My doctor Gave me the option of oral medication, or insulin or in conjunction with the education program eat low carb eating and exercise. I chose to try diet and exercise. I would have had to have a substantial improvement in my BG numbers with in one month or she would recommend insulin and testing for T1
with starting on a less than 90 carb a day way of eating and exercise four days a week. I responded well and my FBG in one month was 130+ Today 50 carbs or less a day. Diet and exercise no meds. FBG range 95 to 120 My AIC has been 6.0 or under for almost 10 years.

This was me, we are all different, But I could have easily had a final diagnosis of T1 if I had not responded so well.

The point I really benefited by Doctor that Gave me an aggressive treatment plan.
I agree trust your gut reaction

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@DrBB put it very well. You might be type 1 and waiting 1-2 months before follow up could be dangerous. Ideally you would get a C-Peptide test and a Antibody test for GAD65 and IA-2 antibodies to help determine if you might be type 1.

I had similar symptoms to you and found out I’m a type 1. I lost 20 pounds in 2 weeks. I had keynotes an A1C of 13%.

In general I also felt really bad, no energy, just felt like I was being drained of life. Once I started taking insulin I started feeling better pretty quickly.

If you read enough on this site you will see time after time doctors labeling people as type 2 and finding out later they were really type 1.

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Well, first Endo I called said I need a referral and it would be late Dec/early Jan before I could get in as a new patient. Still have a couple to call as they were out to lunch, but this isn’t looking good.

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YES! The feeling bad and no energy is making it really hard to function.

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You probably need to go to the ER. There is no way you can wait months for treatment (I am not a medical doctor, but I would suspect you will be in life-threatening DKA by then based on what you are telling us). The ER may be able get you into an endo faster, or at least someone who can get you started on insulin, and they should be able to get some IV insulin into you right now. Do not agree to leave without insulin and a follow-up appt within the next week or so.

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@Adiina an Endocrinologist is going to know best how to treat/diagnose you. Make sure when you call them about an appointment make it very clear what your A1C and Ketones are. They may prioritize you more if they have more background.

Something like half of all type ones are diagnosed as adults but it seems many doctors are still behind in knowing this. Also if a person is overweight they may be less likely to consider they could have type 1.

When I first called the Endocrinologist they told me 2 months. I called back and explained in more detail and they got me in about 3 days later.

I recommend getting your self some Keytone strips to test daily, they are cheap. I would say if you get anything above a low you should consider going to an ER. I’ve never had DKA but that is the type of thing that can and does kill diabetics new and old.

If your body is barely making any insulin then the metformin won’t help at all. The other thing is if you are a type 1 starting insulin sooner can prolong your bodies ability to make its own insulin. I’ve been taking insulin for about 15 months now but my body still makes a little insulin. When your body makes even a little it makes controlling blood sugar easier.

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I did explain the situation. She said the only thing that could get me in sooner is a doctor to doctor call requesting the sooner appointment. I have a few others I am going to try when they return from lunch. And yes, I’m overweight, so I’m sure that’s not helping me plead my case.

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I’m preparing for the possibility that I may be going there after work…

Well its good your on it and being persistent. It was scary for me to every morning get on the scale and lose 1 to 1.5 pounds per-day. I would eat extra to see if I would stop losing weight and it didn’t work.

I felt drained of life (not really tired, and not a feeling I’ve ever had before). I knew something was very wrong but it never occurred to me to be diabetes. I assumed I had cancer or something like that. I remember telling my wife at the rate I was losing weight I won’t be around very long. Luckily my doctor figured it out after my first round of blood test and now I’m on the life long path of baby sitting my sugar but at least I feel good :slight_smile:

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Yes, it’s scary for sure and it’s amped up recently. From 09/11 - 09/18 it was a 10 pound total loss. I tried to explain to my husband the tired feeling but like you said, not a feeling I’ve had before. Just taking a shower yesterday took everything I had. And thank you for the names of the tests I need to request. I feel better informed being able to specifically ask to make sure that those are included.