A1C Mystery Will not Come Down

I’m new to this forum and look forward to learning more from others.

Several years ago when I was due to get some travel vaccinations, the GP (filling in for my normal GP) asked how my diabetes management was going? This was news to me as I was not aware I had diabetes. She informed me that upon reviewing old blood work files that my A1C was 10.6. Two years laters and multiple tests including glucose tolerance tests, wearing blood sugar monitors, and an array of others tests (thyroid, hormone, etc) -all say things seems pretty normal. Two endocrinologists have not been able to provide a diagnosis. I have not been diagnosed with diabetes yet my A1C is still 10.5 after reducing my sugars to near zero and elimination most carbs and then moving to a low carb diet.

I now have persistent symptoms - dry mouth, tinging in fingers/toes after eating, gut ache (not bloated), lightheaded after eating most mornings, etc. Sometimes these are so bad I have to take some or most of the day off work.

So this has been a mystery and I’m wondering if anyone has any insight. Thank you.

1 Like

@Zack welcome to TuDiabetes! I’m sorry to read of your troubles, especially in getting a diagnosis and, more importantly, treatment.

You need to see another doctor. An A1C of 10.5 is way too high. It shows your average blood sugar is in the neighborhood of 250+. Not good.

Please, do yourself a favor and go to a different doctor and keep going to a different one until someone gives you the treatment you need.

6 Likes

Hi Zack, and welcome to the forums.

I totally agree with what Tapestry said. And, rather than going to another GP, you should definitely see an endocrinologist.

1 Like

Are they treating you at all, if they can’t diagnose you as T1 they should at least be treating you as T2 and after 2 years of that not working they should be considering T1 again.

Not every T1 can definitively tested to be T1, some have none of the antibodies that are clear markers of the disease, an absence of these antibodies does not rule out T1.

I don’t see how you can consider a 10.6 A1c anything but diabetes of some type. Getting your numbers down is the important thing. I looked at your profile page, it looks like you are doing your part, your doctors need to step up their game.

I suggest to get BG meter and log before and after meal bgs. Also log what you ate. Fasting bg may be normal, but after meal bgs will clearly show high if you have diabetes.

Here is a good chart.
https://www.diabetes.org/a1c/diagnosis

2 Likes

Thanks Gary. It’s been frustrating. I have seen two endocrinologists that have not diagnosed diabetes. They want to see my daily blood sugars (fasting, etc fluctuate which they don’t seem to be doing - keeping within normal ranges. I’ve had a lot of time on my hands and today and went as far as getting advice on Just Answer .com. I was connected with an endocrinologist (today on this website) in the US and had a quick call even and he said I should immediately go on metformin 500-2000 daily and watch for heart and kidney issues and consider other meds. He said I had diabetes without a doubt. I can’t understand why my Canadian doctors aren’t seeing the same issue. I do appreciate your comments so thank you.

3 Likes

Thank you. I do have a BG meter and did this some time ago when this started but will get to it again and pay attention more to the readings after meals. Maybe there has been changes. Thanks.

Thanks Tapestry. I wil do that. I spent a bit too much time working with my usual team but know I need to push it and work with others.

  1. You are full blown diabetic and that is what you will hear from anyone on this board as well as any doctor. If you drive your car 120mph(200kph) on the highway and get stopped by the police do you tell them that you had no idea you were speeding because nobody specifically told you you were speeding while driving? The GP asked you how you were managing your diabetes and that your A1C was 10.6. How much more specific do you expect a doctor to be?

  2. You don’t give much information beyond a few generalities but based on what you posted, I would guess that you most likely have may interrelated issues potentially including excess weight, high cholesterol, high blood pressure beyond your high blood glucose levels.

  3. You are rapidly headed to long term, non reversible issues based on your claim that your are in the initial stages of getting some. Being lightheaded may be a result of low carb eating (keto flu) if you are eating low carb without any research or medical follow-up.

  4. You say you have reduced your sugars to near zero and elimination of most carbs and then moving to low carb diet. These are all very relative statements. How many meals a day do you eat? How many carbohydrates per meal? How many total carbohydrates in a 24 hr period? Do you ever snack? If so, have you counted that in your daily carb count?

  5. You say you were on a blood sugar monitor. Which monitor were you on and for how long? A monitor reports every 5 minutes so anytime you eat, exercise or medicate you can evaluate the result in a very short period of time.

Diabetes is very much a DIY disease and how much effort you put into gaining knowledge and getting under control determines your outcome.

It sounds like you need a good endocrinologist at least to get you started on a proper road to control based on the number of issues you have listed here.

Welcome to the forum and a lot of people here that have gone through your symptoms and issues are ready to give you an idea of what they have done to conquer one or another aspect of this scourge as well as point you to the right professionals to work with your specific issues.

Best wishes and stay safe during these trying times.

This I do not understand, with an A1c of 10.6 there is no way your glucose levels are in the normal range. When have you been doing your testing. @MM1 has an excellent suggestion, do frequent testing for a while, including testing 1 to 2 hours after a meal.

1 Like

Thanks. I do understand that it is very much a DIY - at least I’m headed that way. My GP and two endocrinologists have indicated that it’s not debates. I wish I could show you all my numbers but other than my A1C - all my numbers related to this have been in the normal ranges. I wore the Libre (continuous BG monitor) for two months and all readings were in normal ranges. I also did the BG finger prick for three months and all readings were in normal ranges (morning, after meals, etc). Because there is not a correlation with other indicators these endocrinologists have hesitated to offer a diagnosis. I am a marathon runner, not overweight, blood pressure is normal ranges.

But I am committed to finding answers/suggestions elsewhere (as my most recent visit with an endocrinologist was not helpful). So appreciate your nudge to get things and gear and take charge of this issue more directly. Thanks.

1 Like

Will do. thanks.

Your situation is baffling, has anyone considered reasons that your A1c might be an error. I did a search and have learned that conditions that change the life span of red blood cells can cause inaccurate A1c readings.

We did look at other things or issues that would raise the A1C. I worked with a naturopath who thought it might relate to continuous high stress/constant flight/fight mode because of my work in special forces overseas. That was some time ago. While stress is a factor I don’t believe this is the culprit. Again - thanks for your thoughts. I appreciate the time you’ve taken.

1 Like

Led Astray by Hemoglobin A1c: A Case of Misdiagnosis of Diabetes by Falsely Elevated Hemoglobin A1c

Hemoglobin A1c (A1c) is used frequently to diagnose and treat diabetes mellitus. Therefore, it is important be aware of factors that may interfere with the accuracy of A1c measurements. This is a case of a rare hemoglobin variant that falsely elevated a nondiabetic patient’s A1c level and led to a misdiagnosis of diabetes. A 67-year-old male presented to endocrine clinic for further management after he was diagnosed with diabetes based on an elevated A1c of 10.7%, which is approximately equivalent to an average blood glucose of 260 mg/dL. Multiple repeat A1c levels remained >10%, but his home fasting and random glucose monitoring ranged from 92 to 130 mg/dL. Hemoglobin electrophoresis and subsequent genetic analysis diagnosed the patient with hemoglobin Wayne, a rare hemoglobin variant. This variant falsely elevates A1c levels when A1c is measured using cation-exchange high-performance liquid chromatography. When the boronate affinity method was applied instead, the patient’s A1c level was actually 4.7%. Though hemoglobin Wayne is clinically silent, this patient was erroneously diagnosed with diabetes and started on an antiglycemic medication.
https://journals.sagepub.com/doi/full/10.1177/2324709616628549
Another case of the hemoglobin Wayne

Here is another one to look up…
Hemoglobin (Hb) S-beta(+)-thalassemia is a relatively mild form of S-beta-thalassemia, but it may interfere with HbA1c (A1c) assay. (To be honest I have no clue what S-beta-thalassemia is).

These two things seem to be the most common reasons that come up…

7 Likes

@Zack and @MOOBM:

I’m no doctor, but it sound to me as if @MOOBM has come up with two rare, but identifiable, conditions that may explain the mystery you are seeing. I would give @MOOBM 10 gold stars, print this out, and find out if your team has considered or looked for these conditions. Clearly … and I did not know this … there are things other than diabetes that can elevate your A1C.

Best of luck in unraveling this mystery.

John

3 Likes

The A1C is an indirect measure of BGs, and is based on your blood cells living approx 3 months. When I had chemo, it killed off blood cells. My A1C was tested and was a 2+ points lower than normal. If your bgs are normal, but a1c high, then for some reason your blood cells may be living LONGER than normal. If that is the case, see a blood doctor specialist.

Your before and after meal BG and fasting BG are the most helpful evidence your body’s ability to make/use insulin when needed.

Note Type 2s often make too much insulin, but body does not use it correctly.

Find a better endocrinologist!

1 Like

Do you have a Joslin Diabetes Center in Canada? Might be worth a trip. Nancy50

There are other things, kidney issues such as erythropoietin and liver issues can be the cause, sickle cell disease and anemia disorders. I’m sure there are others.

Perhaps your medical team should focus on all your symptoms and not just your A1c.

No Joslin in Canada,sorry. Nancy50