Newly Diagnosed - 11.6 A1C

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.

My interpretation for the test is this.

C-Peptide - if its low could be do to T1D immune killing off beta cells.

Antibodies (GAD65, IA-2)
If you have either or both that is much stronger evidence you have Autoimmune type 1. Not all type 1’s will have antibodies but t seems like the majority do have them.

Links to Test. (mostly posting to give you the test ID number but also an option if you want to get your own test).

C-Peptide (#372) - C-Peptide | Ulta Lab Tests

Antibodies Test (#10584) - Glutamic Acid Decarboxylase-65 (GAD-65), IA2, and Insulin Au | Ulta Lab Tests

Best wishes to you getting answers soon. This forum is really great for advice and sharing information.

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Misdiagnosis is still way to common, the latest stats said that 30% of type 1’s will be misdiagnosed as type 2’s. 50% of type 1’s won’t get it until after they are 30.

I was misdiagnosed for over 9 years, And I even asked if I could be type 1 because my uncle had died from type 1. The first pcp and then endo just dismissed my question if I could be type 1 and said you’re not type 1 and never tested me. When I finally switched my pcp who sent me to a new endo they hired, I was finally diagnosed right. Luckily I had been put on insulin fairly early because medications made me sick…

The misinformation by the medical community unfortunately is still high. I believe because while I wasn’t drastically overweight but not skinny that one look at my age of 46 and weight said you have to be a type 2.

Type 1/LADA is a slower developing form of type 1 and can take years to fully develop. It means you still make some insulin until you don’t. There is just a lot of medical personal that don’t seem to know about it. And a lot of pcp it’s said will only run across one or two type 1 diabetics in their practice.

Metformin only blocks the glucose your liver makes but doesn’t bring down your sugars, your own insulin production has to do that. It certainly sounds suspicious that you might be a type 1 not a type 2. Especially with the weight loss.

Those ketones can be very dangerous, it can rise to a level that’s life threatening. You need to look up DKA for the symptoms and watch for it. If you are a type 1 the odds are you will slowly get sicker until you get some insulin. Even urgent care will usually give you an insulin shot to bring down your levels. Both urgent care and emergency can make you referrals usually faster? Emergency has more ability to probably run more tests.

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Well, I have a lot of those as things are uncontrolled right now, The newest thing is I am having stomach pain, but I thought it was just the metformin giving me issues.

Thank you everyone for your suggestions and help. I’ve called several Endo’s and explained the situation. They all required a referral and the earliest is the last week of October. Obviously I don’t feel I can wait that long so I will be heading up to the ER after work to hopefully get some legitimate help. Thank you all again!

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You might check with your insurance to understand what cost they would cover in the emergency room. It could be better if they would recommend you go to the emergency room. I don’t know how your insurance works. But the emergency room could be necessary

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You’ve been given great advice here by many. Go to the ER! After reading your symptoms, I think there’s a significant chance that you are a type 1 diabetic with an absolute need for insulin.

Your description of feeling no energy in the shower strongly reminds me of when I was diagnosed. At one point I was so out of energy that I couldn’t even make it to a chair when I entered the front door of my house. I just laid down on the floor!

I wouldn’t wait til after work to go to the ER. I would go now! I’m hoping this level of concern for your safety is wrong but we have good reasons to be concerned, even at this remote perspective.

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Okay, this is scary that @mohe0001 just posted on a different thread

It just goes to show you what a difference it can be doctor to doctor and hospital to hospital. It’s best that you are informed as much as possible so you can get the help you need.

mohe0001

6h

That diabetic educator was using ‘fighting words.’ Shouldn’t be tolerated.

Check out this post, Marilyn: Insulin at the hospital

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I agree with the others: you may very well be a T1 and in immediate need of insulin. Get another opinion right away. Keep us posted, please. Good luck!

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Stomach distress is a DKA indicator and given your numbers and symptoms I would treat it that way until proven otherwise. Please go to an ER stat.

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Let us know how you are doing.

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I have a suggestion. My health insurance plans have always included access to an Advice Nurse. If you call and talk to one, and given them the numbers and symptoms you are telling us, they may advise you go to the emergency room. Then you should be covered.

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I agree with everyone else. The fact that you have such high ketones, combined with the high glucose levels, is definitely an emergency situation, regardless of which type you actually are. I, too, suspect you may be misdiagnosed but, either way, this cannot wait for metformin to kick in, even if you are definitely a T2.

Please post back as soon as you’re able to and let us know if you’re okay and getting the help you need.

Ruth

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I went to the ER after work and I’m being admitted. They are going to do additional testing to determine what type I am as well as work to get my levels down. :frowning:

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Yay! You’re where you need to be!

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Well done, Adiina!!! You may have just saved your own life.

When you have time to breathe, consider writing a note to the previous provider to teach them what you learned. They need to learn too so no one gets hurt.

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Although being admitted isn’t fun it is for the best in this situation. The fact that they are running the tests to find out what type you are should save you a lot of frustration and possible ill effects from everything to insurance and medications to preventing complications. Now you will be safe from going into DKA tonight and you will be out sooner than if (like me) you went into a coma and were in the ICU for a week. Keep us posted :smile:.

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@Adiina That’s wonderful that you are being taken care of!!! I’m so glad to hear it!

Thanks for letting us know!

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Yay, thanks so much for checking back in—we were worried about you (could you tell?). Get those levels down, then worry about Type!

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So glad to hear you are in the hospital and getting the level of treatment warranted! Let us know how it goes! Once you get steady insulin in you, you should start feeling much better soon, although keep in mind, without enough insulin, your body has functionally been starving no matter how much you ate, so it will be a little while before you’re completely back to full energy etc, but you’re on your way.

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