Confused and a New T2

Hi all!

I was just diagnosed last week as a T2. I’m 31, lead a very active lifestyle and am not overweight. I have 0 clue how this even happens. I just had frequent nights off waking up to pee and drinking any and everything I could get my hands on for weeks. I thought I had a UTI however my results showed ketones in my urinalysis and after a finger stick I was 316 and on my way to the ER. The thing is I felt perfectly fine, besides the thirst. I’m currently on 15 units of lantus in the morning and 5 units of humolog with each meal. My BGs haven’t budged a bit. My fastings are still 170-225 sometimes and during the day I stay in the 200s. Rarely making into 175 range. How long does it take for the BGs to get back to normal? I eat a low carb diet but there’s been no real reflection of the all the meds and needle sticks I’m doing.

My endo also isn’t convinced that I’m a true T2. She says that some people my age and profile, present as T2 upfront then become T1.5. Her goal now is to get my numbers in range. Any thoughts? Has anyone been diagnosed as a T2 then had it changed?

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@TC5683
Have you had antibody tests run? If not, my suggestion is to tell your Endo that you want them run immediately. If you Endo gives you a hard time then go to your GP and ask them to order the lab work for you. It makes no sense for your Endo to be debating your diagnosis without running these tests.

IAA
ICA
GAD65
IA2
ZnT8

Don’t let them only order some of these. Demand that all of them be ordered. Including the ZnT8 - make sure that is on the list.

It would be reasonable to get at the same time:
CBC w/ diff
CMP

The CBC / CMP are just general tests not related to diabetes diagnosis and often times ordered as part of an annual physical but I kind of like to glance at those to see if anything unusual jumps out. Plus the CBC and CMP are super cheap so why not.

EDIT: These tests are all resulted fairly quick. You should have the results back in a couple days. If they say anything like 4~6 weeks - then just ask for the lab orders to be written for either Quest Diagnostics or Lab Corp and get the blood draw at either of those places (assuming you have them around you). They both will do the job properly and quickly.

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One of our members is @Melitta. She has written extensively about type 1 diabetes misdiagnosed as type 2 inaccurately based only on an adult age of presentation and obesity. Do a search on “@Melitta” for links to what she has written about that topic. It’s my understanding that 10% of all T2D diagnoses are really T1D.

Your doctor seems to be aware of this possibility. I agree with @Tim35, aggressively push your doctor for all the antibody tests. Also get a c-peptide blood test if your doctor has not already ordered it. It’s an accurate marker of just how much insulin your body is currently making.

In the meantime, here is a March 2018 article on the topic published in Slate. @Melitta was a resource for the article’s author.

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Thanks so much! I see my endo on the 14th and I’ll be sure to ask for more tests.

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I’m another originally diagnosed as T2 and mostly reasonably controlled with metformin for many years. A little older than you at diagnosis and quite slim, with none of the usual T2 metabolic issues. After more than 10 years, with gradually poorer control, a new endo looked at me and said I must be T1 even without added insulin for all that time. We ran the antibody tests, and sure enough it showed positive results.

Perhaps you would also benefit from a T2 drug like metformin. But it’s also quite possible you fall into the T1 or LADA camp.

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@TC5683
BTW - For us, it takes about 3~5 hours to get a high BG back to normal.
** IF ** the proper amount of Humalog is used. On the other hand, if we under-dose then we can not get the BG back down. Sometimes we find that we have to over-dose to KNOCK the high BG down and then test the BG with a meter maybe in about 2 hrs and often times CATCH the BG at the lower end with maybe 12 (relatively) fast carbs to get the BG to level out in our target range.

The reality is that it is not trivial and (for us) no magic bullet.

Point being - Although you do have an appt with your Doc coming up in a week or so, perhaps you could call in to the Doc and discuss if it would be appropriate for you to increase the amount of insulin? However without you having gone through any diabetes education yet perhaps the Doc is more comfortable having you (more or less) just tread water until they can get more in depth on how treatment should be?

Bottom line - I would put a call in to the Doc and not wait another week.

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Thanks so much! It’s been quite a whirlwind trying to understand and remember all of these things, that I never had to think about a week and a half ago… I’m hopeful that I’ll have some clearer answers and plan moving forward.

Hi TC: I am the person that @Terry4 mentioned has written extensively on misdiagnosis (Type 1 misdiagnosed as Type 2 diabetes, based on age not etiology). You didn’t really “present as Type 2 upfront” and Type 2 doesn’t become Type 1 (but many if not most adults are misdiagnosed as Type 2). I agree with Tim35, best to get the full suite of autoantibody tests run–if you are positive for any one autoantibody, you have Type 1 autoimmune diabetes. Best of luck to you!

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Also, TC, here is my updated blog of my top ten tips for the newly diagnosed that I hope you find useful.

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FYI - I’m another that was similar (though a bit older at diagnosis at 50). I was diagnosed as T2, but response to orals was not good, so went on insulin early. I was active, not overweight, etc. at diagnosis. Eventually my Dx was changed to T1, (though some still are unconvinced - though it has no impact on my treatment plan).

Get the testing as above and good luck!

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Thanks so much!!! I appreciate all the feedback…I’m still having trouble adjusting…but am doing my best.

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Yes, lots and lots of us have misdiagnosed as T2 when in fact we were T1 (LADA or T 1.5- is kind of a stupid label if you ask me but they use it to describe an adult whose pancreas shuts down in adulthood). Please keep up updated. This place is a great resource!

Any tips on getting through the airport and international travel? I go to Japan for work next week, and it’ll be my first trip through TSA and trying to manage my injections with time change/foreign country fun…lol

http://www.travelinsurancereview.net/tips-and-advice/travel-safety-tips/safe-overseas-travel-type-1-diabetes/ http://www.diabetes.org/living-with-diabetes/know-your-rights/discrimination/public-accommodations/air-travel-and-diabetes/ and make sure you get a drs note for aney and all meds and make sure you have the dr give a note abot your diabetes and that u need the meds you have for it

Yes I have my doctors note! and it includes all my supplies, meds, food/drink stuff as well…Just trying to figure out the logistics of it all…

thats good and i want to wish you good luck on your trip and i hope it gose ok

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