Not yet properly diagnosed

I’m not sure if i have Type 1 yet. I am a 35 yr old and have been overly active most of my life and healthy ( BMI just over 25 :)). 5 months ago i started my usual summer biking and started eating a bit healthier and started losing weight rapidly ( 2-3 lbs a week)… in june my blood work showed i was diabetic with FBG over 275 and Aic at 12.3 - i realized i had been thirsty and urinating a lot but not a lot more than usual summer dehydration from being outside all the time. Other than that i felt the healthiest ive ever been.

After a few days of denial, i doubled down on my healthy eating and exercise and have been reading a lot - which all points to me likely having T1. Diabetes is in my family and most of them went on insulin shortly after diagnosis - but were never classified as type 1 or 2.

My PCP assured me i had T2 - put me on MF and referred me to an endo - he did humor me and agreed to write a script for c peptide testing before next visit in oct. endo doubled my MF dose and added trulicity. After much argument he did agree to add GAD65 to my test script for oct also. The meds have made me feel the unhealthiest in all my life with sever GI issues and FBG levels going even higher while i’m barely eating any carbs. So i stopped MF and things improved - both with GI and FBG levels - mostly because, i can do some exercise without GI issues. I got the tests my endo ordered early and found out that i was positive for GAD65 antibodies but C peptide is not terribly low.

I had thought the result would make my endo order more antibody tests or change medication course, but he is insisting i should continue on the same meds and add more oral meds and retest 2 months later as planned.

I’ve made an appt with a different endo, but earliest appointment is 6 weeks away. I’ve read a few misdiagnosis stories and feel like i’m in the middle of one.

Any advise on things i should be asking my doctors to help me get on the right treatment path?


Hi @pady87 welcome to Type One Nation. No one is a doctor here and as a general rule we can’t give medical advice. In my opinion, the most important thing you can do is strive for communication with your doctor. Do they know the severity of the side effects of your medication? Do they know about you not feeling well enough to exercise? Then, and also in my opinion, there is information you can ask… why the current medication strategy, what is the game and what parameters change the course of action?

Antibody tests are not always conclusive. C-peptide tests measure how much insulin you are making. A good question is if c-peptide is low, or very low, what are drugs that affect your insulin sensitivity going to do? Classic type 2 symptoms are high blood glucose and high c-peptide.

Get another opinion. You may need even a third.

The truth is that if you are type 1, then your c peptide will (sometimes slowly) go to zero and you will need to inject insulin. But none of this is happening yet. Insulin is a dangerous drug and you can hurt yourself using it, which is why I am guessing your current doc will be a little slow to agree to. Do keep testing and recording blood sugar. Work on communicating with your current doctor and try your best to get additional opinion from other doctors. Good luck.

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Hi @pady87 and welcome to the forum. You are seeing am endo now and we associate them with diabetes but the speciallty also treats osteoporosis, thyroid disease, fertility, and menopause to make just a few other conditions. Your doctor may specialize in an another area, or they may not be specifically trained in Type1 (relatively few endos are).
Whether you need insulin is not something anyone on the forum can say, but since the oral med your doctor prescribed has you feeling worse rather than better you need to let them know. There are others they can try as they work to determine what form of diabetes you have.

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@joe @wadawabbit thanks for all the insights!!! the 2nd endo I’ve made appt with seems to have a lot of relevant research on both T1 n T2 so hopeful they’ll be better…

Will work on communicating with the current doctor while I wait for the 2nd opinion… I’m also new to dealing with dr’s offices, insurance, etc in this country which is adding to the frustration of having to depend on internet more for answers than my doctors…

Hello @pady87 ! This diagnosis journey you’re describing sounds terribly exhausting and stressful, I’m sorry you’re going through this and I hope you have people around to support you. Reading through your post makes me think of my own diagnosis story where my PCP told me I was type 2 and prescribed MF which caused me similar issues you’re describing. I managed to get an Endo appointment 2 weeks after starting MF where the course of action was to get me off MF, diagnose me as type 1, and start insulin because of how I was negatively responding to MF. A few weeks later, I saw a nurse practitioner specializing in diabetes management and she asked me about genetic testing for something called MODY (Maturity-onset diabetes of the young). Apparently, there is more than just type 1 and 2 diabetes, there’s a whole lot of other types out there. In my independent research, however, the treatment options remain relatively similar to treatment for T1 and T2. It might be worth researching other types of diabetes to ask your medical team about and provide you with additional knowledge in general as you navigate this new reality. Wishing you the best of luck!

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@taldrich Thanks!! I did read about MODY and LADA(my results point to this), but there’s even less info for those that type1…

My diagnosis was 2 days before a week long biking event I trained for all year and have done before with less training… i didn’t understand MF side effects properly, so struggled with managing my food and electrolytes in the middle of a heat wave… ended up biking only 40-50 miles a day instead of 80-100… also had BM issues and butt pain which I thought was regular biking issues, but they all worsened the week after… 2 weeks later at endo appt, he told me it was all prob due to MF, but doubled dose anyway… when I asked if it could be something other than type2 because my symptoms weren’t matching everything I was reading about T2, he dismissed it but added GAD65 and c peptide tests for follow up in 3 months which is when I looked into other possibilities…

Having seen lots of family members with diabetes on my dad’s side, I thought I was prepared for this… but it’s been harder now that im experiencing it… at diagnosis most of my family members (in India) had fbg in high 200s that didn’t get controlled with oral meds and were put on mealtime insulin - and scary hypo incidents… they were and are all treated as type2s and told to work on their diet and exercise despite being all overly active ppl on healthy diets…

I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has diabetes and works in the field so has a unique personal perspective that is particularly helpful. While it won’t lead you to a diagnosis the insights might be helpful.

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@joe if antibody tests are not conclusive, are there any other conclusive tests I can ask for ? I’m guessing if my c peptide levels at next test may indicate if I’m heading towards T1 also.

Hi @pady87 [the following is only my opinion] there simply isn’t a fully conclusive pass/fail type 1 diabetes test. There is only evidence based next step type information. Your current situation is high fasting bs. You’ve got a doctor reluctant to prescribe insulin. You are presenting with c-peptide so you are, for the time being, making insulin. There is nothing to do except treat symptoms, using the least impact/least dangerous drugs available, until such time that the strategy fails (or the patient cannot tolerate the medication prescribed) and then select other drugs up to and including insulin.

I’m just a mechanic, please don’t take what I say as actual medical information.

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Has anyone told you about the honeymoon phase? It’s possible for you to have rye 1 or LADA which was diagnosed early and doesn’t yet need insulin. That is what happened to me 8 years ago. My internist diagnosed me as type 2 after a routine blood test. I had no symptoms until he put me on Metformin. Like you, I had a terrible reaction to that drug. After 2 weeks I stopped taking Metformin, cut my daily carb count to 80 grams and found a good endocrinologist who discovered GAD antibodies and regularly checked for c-peptide. I managed that way without insulin for 2 and a half years. Eventually I was started on a once-daily shot of basal insulin and gradually added bolus shots. I’m now fully type 1, with a pump.

I just want you to know that everyone’s diabetic journey has its own timeline and the honeymoon phase can be brief or long. I hope you can find a more simpatico endocrinologist, one who is willing to share information and navigate this journey with you.

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@kilupx Thanks!!! Have a lot riding on the next endo… no pressure on them at all!! :grinning:

I’ve read about the honeymoon phase and Lada in this and other forums… but my pcp and 1st endo decidedly didn’t want to talk abt anything other than type 2 even after the positive gad65 result… are false positives a concern with those tests?

I’m currently on a low dose of trulicity and maintaining carbs at abt 60-80g per day, don’t have any symptoms other than losing abt 2 lbs a week with just average workouts - 40 lbs overall… fbg hasnt improved or gotten worse since this initial diagnosis…

I tried to get my pcp to order other antibody tests tdy so I have results beforehand, but he refused… not sure what else I can do until I meet the new endo.

Hi again. A thought that came to my mind is this: I don’t know very much about Type2 except that even if you are Type2 you may need to take insulin at least temporarily. I’m wondering how your numbers have been (that’s a rhetorical question), and that leads to a question you might ask your doctor: given my numbers, would it be beneficial to go on insulin for the time being, while we are waiting to see what type of diabetes I do have? They might prescribe it with caution and supervision.
Also, Metformin is not the only oral med out there - given the side effects you describe you could ask about alternatives. I hope things go well with the endo you will be seeing in future. Then and in the meantime remember to be your own advocate.
Are you keeping a log off your meds, meals, exercise , etc? It will be helpful for your visits. There are a number of electronic trackers - MyNetDiary was my favorite (it has an annual subscription). I’m using Glooko now - it’s free, as are MySugr and SugarMate - to name just a few.

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Hi, thanks so much for taking the time to follow up…

yeah, I’ve been keeping a log of everything I eat, exercise, and meds since aug1… the 2 weeks I was on highest MF dose, fasting levels went crazy high, close to 400 once despite a pretty low carb diet (I wasn’t eating much of anything n barely working out)… it has been steadily between 230-280 since stopping oral meds - eating low carb + 5-6 hours of exercise a week + 30 mins a day of stressful phone time with insurance company and dr office.

Existing endo has prescribed gilizipide + lower dose of MF… gonna start them one at a time starting next week to see how I react to each one…

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Update - I’m now properly newly diagnosed type 1… i got a definitive diagnosis 3 weeks ago thru an employer provided service . The service made recommendations to my PCP to get me started on insulin and cgm… but my PCP refused to take that recommendation and insisted i continue on oral meds for type 2.
So, i found a new PCP who read everything and started me on insulin and CGM until i see the new endo. i had signed up for a home test of antibodies through trialnet while fighting with my previous doctors. Got the results this morning - i’m “overwhelmingly positive” for 4 auto antibodies confirming i was definitely type 1.
Thanks to all that responded here - i did get and read the book “think like a pancreas” and will likely be re reading a lot.

Thanks for the update @pady87 ! It’s not the news anyone wants to hear, but now you know and can take control. And I’m so glad you found a primary care doctor who listened to you!
When do you see your endo? At initial visits I’ve found they will ask you to keep a log of meals, insulin and exercise for a few weeks, then come back so they can gauge how your current regimen is working. You might get a head start by starting one in advance. Of course you can use pen and paper but there are lots of apps available - most of them free.
I don’t know if you’re interested yet in a pump but don’t feel pressured to get one if you would rather not. Many people do well or even better on shots but it is a personal choice.

Thanks!! As bad as the diagnosis is, I’m more relieved than dealing with the wrong diagnosis for longer…

I see the endo on the 23rd. Tracking food exercise and insulin dosage on the freestyle libre2 app so its all in one place - it has been very helpful for me to see it all together and understand things i’m doing wrong.
Definitely not enjoying the injections and open to trying a pump, after i understand all this a little better,

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Seems the mantra needs to be “Follow the science!” Similar to other topics “Follow the Money!” Sorry about the diagnosis @pady87, but glad you have a correct determination for appropriate treatment! Now the fun begins to sort out which and how much. Here’s hoping for a quicker resolution with good advice from smart people!

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Pady welcome to the club and sorry you are here. You have a great attitude about your situation, hold on to that.

Not all needles are created equal. Did you get vials and syringes or pens and pen needles? Are you in the US?

@spdif Thanks! yes, I’m in the US… I got flex pens and 6mm pen needles…

Definitely take a written list of questions to your first endo appointment. At the bottom, ask if the 4mm pen needles would be okay for you. In my experience the Novo Nordisk NovoFine Plus 32G pen needles are close to painless with the BD Nano 2nd Gen 32G a close second. Ask your endo to prescribe one of these. When you fill the prescription, let your pharmacy know you won’t accept substitutions.

Type 1 Diabetes is expensive to treat. Next time open enrollment happens you will want to evaluate all the insurance plans your employer offers. For right now you need to read up on what your current insurance plan offers specific to diabetes to have some info ready for your endo appointment. Log on to your insurance website and get the latest Evidence of Coverage document. You are looking for what supplies, CGM, glucose meter, test strips, pump, pen needles, etc. are covered as Durable Medical Equipment (DME is a product category filled with things that aren’t durable) or under your pharmacy benefit. Some items might be covered under both with wildly different copays… If you aren’t already overloaded reading about T1D I also suggest looking at your insurance plan’s formulary and be familiar with which insulins and glucagon are covered. Also check for CGMs in the formulary.

JDRF has great resources on health insurance. Type 1 Diabetes Health Insurance Guide