Puzzling Diagnosis

Oh, where to begin! Recently, an endocrinologist diagnosed me as pre-diabetic, prescribed metformin, and told me to eat better (without telling me what “better” meant). The endo made the diagnosis after elevated HbA1C tests and the CGM indicated (1) my FBG was continuously over 100 and (2) post-meal BG was 140-160. My insulin levels were normal, but my aldosterone was high. Aside from that, everything else was normal.

Given the lack of communication from the endo, I assume he believes I am on my way to becoming a Type II. (I have an appointment with a new endo because my current one and his staff are seriously lacking in bed-side manner).

Anyhoo, all of this doesn’t make sense to me. Yes, I have a family history of Type II diabetes in my family. Both individuals developed Type II later in life, and both were seriously obese. My situation is completely the opposite. I am 31 yrs old and a size 2. (To be fair, I also have Hashimotos, Mitral Valve Prolapse, Fibromyalgia, and reoccurring shingles. If only there were a Lemon Law for bodies.)

Since the appointment, I have been taking the metformin diligently and overhauled my diet. I limit my carbs to 15-30 per meal although it is usually closer to 15. Despite all this, my BG is getting worse. Last night, I was 200+ within 30 minutes of eating. I have also lost 10 lbs in the last month or so.

I am puzzled with it all. I don’t seem to fit any type, and I don’t understand why things are getting worse instead of better with treatment. Is it possible that I am developing Type II even though my insulin is normal? And, I am younger than the average onset age and in decent shape? What is the average length of time for a person to go from pre-diabetic to diabetic? Any input/advice would really be appreciated.

Find a new doctor and see them ASAP. Your glucose tolerance is deteriorating and you have lost a decent amount of weight. Those are possible signs that you are on your way to Type I. Do you have other symptoms, such as drinking / peeing a lot? If so, then the urgency is that much greater and you should seek medical attention immediately. If you can, stop by the drug store and buy some ketostix (measure ketones in the urine). A positive result is another indicator of T1D (but a negative result does not mean that you aren’t going to be).

This isn’t to say that you may not be Type II. There are thin Type IIs, some of whom are found out later to be Type Is. But it’s not something to mess around with. You are absolute right in your instinct that something isn’t right!!!

I hope this isn’t so. Good luck!

I apologize if that sounded ridiculously almarmist. You’ll be ok:) But this is not one of those wait until the doctor has time to see you in a few weeks/months types of situations.

I am a Type 2 and Tom is right. The most important thing you can do no matter what Type is get your blood sugar under control with a good Endo with the proper tests and medications. The metformin will not help that much for spikes like that and from your post it sounds like you are insulin deficient.

Thank you for the quick response. My symptoms seems to be sporadic. Sometimes, I down a 1/4 of a gallon of water in 2 minutes, and recently, I’ve woken up in the middle of the night thirsty, which I never did before. However, most days I my thirst and urination are normal. (It seems so weird to discuss my peeing habits on the internet.)

My main symptoms seem to be moodiness. I have been very bummed lately with bouts of unwarranted anger. I am pretty sure my friends and co-workers think I am going nuts. I haven’t been able to tie the moods to spikes though.

Initially, I was a little concerned about the weight loss, but I think it is related to the new meds and diet changes. The weight loss appears to have leveled off for now. Should I see my PCP about this? I don’t get to see the new endo until February.

The thirst is tell tale of high blood sugars as your body is trying to eliminate the excess sugars which of course leads to more urination. Blood sugars can effect mood too. If you cant see the endo a push for a referral to the Endo for more tests from the PCP would be in order.


I agree, make an appointment with your PCP ASAP if you can’t get into the endo. They can order the relevant tests. Even if the symptoms are sporadic, I think urgency still applies. If you are going into insulin deficiency, then you risk going into diabetic ketoacidosis, a life-threatening condition if left untreated. At the very least, your metformin dose is insufficient and should be upped before February. I hope you get this worked out:)

I agree with the guys! You sound like you may be LADA (a slower onset of type 1) or just plain Type 1. Be sure the endo you see does antibody testing and c-peptide testing. You need to ascertain your type so you can get the right treatment. If you are in fact type 1 that would account for the weight loss. I lost 40 pounds before and in the year after diagnosis. The other things that make it look like you might be type 1 are your size, your age and the fact that you have another autoimmune condition (thyroid). February is a long time to wait. Unless you see some improvement soon I would either see your current endo and insist on testing or your PCP. If your numbers start staying over 300 and you feel flu-like symptoms you need to go to the ER. But it doesn’t sound like you are there yet.

Thank you for responding. It is nice to know there is a place for support and to get your questions answered.

The endo did test my ANA and C-peptide. Both came back normal. (I have another panel of tests scheduled January.) The fact that so many tests came up within normal range just adds to the confusion.

What is ANA? The definitive test for type is antibody testing. And “normal” is not a description of c-peptide. C-peptide is a specific number, which tells how much insulin you are making. True type 1’s make very little or no insulins; LADAs make a small amount, type 2’s make a fair amount as they are unable to use the insulin they produce very well. When you say "so many tests came up within the normal range just adds to the confusion"you are confusing testing to see where you are at with your blood sugars and testing for Type. The fact that the metformin is doing nothing for your blood sugar numbers and they are in fact rising even with eating low carb, in addition to your other risk factors, makes it more and more likely you are LADA or type 1. In addition to having poor bedside manner your current endo might be incompetent. You didn’t say how long it has been since he put you on the Met, but have you told him your numbers have risen significantly?

Sorry. ANA is antinuclear antibodies. I wish I knew the exact numbers of the tests. Unfortunately, the endo did not tell me, which is one of the many reasons why I am getting a new one. All he did say was that all the tests came back within normal range with the exception of the aldosterone (and glucose from the CGM).

I haven’t told the endo that the metformin isn’t working. I wasn’t sure how long you should be on it before the effects are fully realized (again, he didn’t tell me). I have been on it for about 6 weeks.

I’ve never heard of “antinuclear antibodies”. Someone may have the complete list, but the ones I’m familiar with and that are commonly tested are the ISA, islet antibodies and the GAD which indicates LADA. I’ve also never heard of aldosterone. Sorry if I sound annoyed, but I was misdiagnosed type 2 and had to figure out my correct diagnosis myself 15 months later. I am LADA so I was able to go that long with oral meds keeping my numbers stable. I was hoping that the occurance of Type 1 in adults was becoming more recognized. Even if you end up being a type 2, you have enough type 1 indicators to warrent full testing.

No worries about sounding annoyed. I am just thankful for the input. I probably sound like a pushover with the doctors. I’m not. It is just this one doctor.

They did not test ISA or GAD. That much I do know. :slight_smile:

If you don’t mind, would you tell me how you were initially diagnosed as Type 2 and how you learned it was LADA? From what I have read on the site, it is a common occurrence, but people generally don’t discuss the initial, incorrect diagnosis.

I am going to call my PCP on Monday. He’ll run the tests.

You don’t sound like a pushover, Belgienne, you sound very frustrated with this endo.

I was diagnosed as type 2, imho, solely based on age. I was 58 when diagnosed. I had been overweight but lost 40 pounds before and the year following diagnosis without trying (which does NOT happen to 58 year old women!). I was put on oral meds and that brought my numbers down and they stayed in range for about 15 months. Then my numbers started a steady rise and continued to do so despite my doctor adding/changing meds. I realized at that point I would have to go on insulin but was confused as to why; I had read that type 2’s can go for years, even decades before they need insulin. I started reading and realized I had several indicaters of LADA/Type 1: Weight loss, oral meds no longer working, another autoimmune disease (Graves Thyroid), and when my doctor started me on an insulin dose for a type 2 it was much too high, so insulin sensitivity and no insulin resistance to speak of. When I got my c-peptide it was very low (two different labs, one was .38 and the other .70), so I knew I was making very little of my own insulin. I couldn’t get a GAD antibody because I lived in Guatemala and they’d never heard of it. But my endo there took a look at me and the list I’d written and said, “You are Type 1”. (She hadn’t heard of LADA - endos here have heard of it but it is not recognized officially so they will just say Type 1.) About 20% of Type 2’s are misdiagnosed type 1’s. LADA is especially easy to misdiagnose as Type 2 meds do help for awhile. Many doctors and even endos are still stuck in the dichotomy of “Children = type 1, Middle aged people = type 2”. Btw just to take the other side of the coin, more and more younger people are being diagnosed with type 2, but yes, they are usually overweight.

Sounds like your PCP will be more helpful until you can get to another endo. Hang in there!

That sounds good! ANA is not good for diagnosing T1D. ANA are a sign of generalized B cell autoimmunity, used mostly to support the diagnosis of things like your Hashimoto’s, crohn’s and other B cell mediated diseases. D is mostly T cell mediated, so antibodies against the specific target (Beta cells) are usually present, but there will not necessarily be a sign of a more general problem with B cell regulation, so ANA may or may not be present. Anti-GAD, anti-insulin, and anti-IA2 are good for T1D. But even those aren’t 100% definitive (you can have them with no T1D, or lack them with T1D). Are you as confused as the rest of us yet? :slight_smile:

Dear Belgienne.

You could be a type 1 and your “honeymoon” period is ending and you may need to be on insulin. When I developed diabetes I was put on metformin and avandia for a year and they did nothing. Weight loss and metformin not working is a sign of type 1 or lada. You could be an insulin deficient type 2. The best you can do and it will need a co-operative doctor is to go on insulin ASAP get your blood sugar in the normal range as soon as possible and then try and figure out what is happening. Sometimes the pancreas can recover quite a bit and the “honeymoon” continues hopefully for a long time. A little bit of insulin in the beginning is a lot better than a lot of insulin later on.

Tom has given some good points on anti-bodie testing which I have never had done because here if you are older you are considered type 2 automatically sometimes even after you end up DKA.

Well, now I am even more frustrated. I went to my PCP. He doesn’t think my flu-like symptoms (over the last several months) are related to my BG because the numbers aren’t high enough. My BG is the only test showing up abnormal. What else could it be?

I did ask about the c-peptide. It was 2.2.

Hi Belgienne: Actually, from your description, you fit the picture for Type 1 diabetes (with a slightly slow onset) exactly: thin, weight loss, Hashimotos, blood glucose levels rising in spite of T2 meds. The gold standard for identifying if a person with diabetes has Type 1 autoimmune diabetes is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies). Medications for Type 2 diabetes will not do you any good if in fact you have Type 1 diabetes. I would push for a correct diagnosis and correct treatment, and as Tom T says you really need to do this SOON. If you have Type 1 diabetes you need to be on exogenous insulin NOW.

ANA is a test for LUPUS… and has nothing to do with diabetes!

I did push. My PCP doesn’t think my levels are severe enough to warrant the symptoms I feel. In addition, he told me that a 200+ bg within 30 minutes of eating wasn’t valid (I took my bg because I got very irritable after eating). It is sad, but at this point I have to wait until things get worse since the endo and PCP (for different reasons) don’t seem very concerned.