New T2- Wrong Diagnosis?

Hi guys, I posted a while ago on a separate thread about the current situation I was having with my possible diabetes.

I am 24, a weight lifter who is not overweight and do not fulfil any of the risk factors for T2. My first HbA1C result was 55 and then 72 on the next test. My BMs have never been over 7, in fact, have very rarely been a high 6. My GP this week has officially diagnosed me with type 2 diabetes, however, I am concerned that with this diagnosis due to my finger prick BM never being high. Am I just clueless about diabetes, or is there a possibility that he may have misdiagnosed me/should have done further investigation? He got a second opinion from another Dr who said he didn't think I was T2 due to my age but to continue with metformin and review.

I have been put on 4 Metformin tablets a day (which I am struggling with due to the effect it's having on my digestive system) and have been told to lose weight, which I feel I will struggle with. I have been told I won't have a diabetes team or nurse and feel as though I have just been given this diagnosis and then left completely alone to try to figure this out!

Is it possible to get a second opinion or based on your experience, is having a high HbA1C and normal BMs a normal thing for type 2? I am seeing people say to see how much their BM rise when they eat carbs to see where they should be cutting food, but mine just don't rise for me to see this, so I am struggling and stressed with what to do! Sorry, this isn't very well articulated but I just feel very confused at the moment!

SaskiaKC said:

What do you mean by BM? (I know what it means where I live but I doubt that's how you're using it here!) lol

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Hi sorry, by BM I mean my finger prick tests

EllieM said:

Hi @LondonC24
Hmm, just reread your previous thread.

An hba1c of 72 corresponds to an average blood sugar of 11.3mmol/L, and at that point you'd expect to have sugar spilling into your urine,

First of all, a disclaimer, I'm not a doctor and nothing I say is a diagnosis.

I would have thought that if your blood sugars are normal (maybe consider getting a trial of the freestyle libre to see if they are going high at night or when you aren't testing?), then you shouldn't be diabetic, and something else is pushing your hba1c up (eg anaemia, certain blood types). You could ask your doctor for a fructosamine test as an alternative to an hba1c test.

Here's a link to some possible (non diabetic) reasons for high hba1c.
Reasons for Elevated A1C Without Diabetes | Lymphatic & Endocrine system articles | Body & Health Conditions center | SteadyHealth.com

The thing that is puzzling me is your ketone levels. Were you eating low carb at the time? Was it just one reading? (Nutritional ketosis is common if you fast or eat very low carb and is usually only a concern if accompanied by high blood glucose.) If your blood sugars are truly normal I would push your GP to either refer you to an endocrinologist or do some further tests, because hba1c is only used as a diagnostic tool because it reflects blood sugars.

And my other thought is to ask whether you've changed your diet or any medications since the diagnosis. A reduction in carbs might well have reduced your blood sugar levels.... (Or a change in medication? eg Steroids are renowned for raising bgs).

Good luck.

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Hi, thanks so much for your reply. The Dr has checked my bloods for anything else and they’re all fine, but I shall ask for the fructosamine test.

I wasn’t eating low carb or fasting and haven’t been on any medication. I feel in a catch 22 as they sent my situation to the endocrinologist dr who said I was too young and *healthy* for type 2 but to put me on metformin? I keep questioning why if I have diabetes are my blood sugars normal and all the drs seem to keep telling me that they’re irrelevant because my hba1c is high and that that’s the indicator.
I have been stressing for months about this, as I have been sent to the hospital, a&e, Diabetes clinic and gp and keep getting mixed answers as to whether or not I’m diabetic!

EllieM said:

And one more thought. How confident are you that your blood testing monitor is accurate? Are the strips in date?

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I bought the blood monitor and strips new, and also use the monitor at my ward sometimes to check. My blood sugars carried out at a&e, the gp and diabetes clinic have all been below 7 too.

Goonergal said:

Do you have any other symptoms? I ask because certain conditions such as iron deficiency anaemia can falsely elevate HbA1c.

As well as @EllieM ’s suggestions, I’d highly recommend you take advantage of the 14 day freestyle Libre free trial - that would give you 2 weeks of 24 hour data which could form the basis for an informed second opinion.

You can order the trial here: https://www.freestylelibre.co.uk/libre/free-trial.html

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Hi, I had all the symptoms of diabetes! I have just ordered a free trial but it looks like they may be out of stock so I’ll wait and see if I receive it, thank you!

EllieM said:

So did you do any blood tests while you had the symptoms? Do you have the symptoms now?

Have you had covid? (Trying to think outside the box as to why your levels may have been high enough to get that hba1c but are now lower?)

Also, did you have the low levels before you started taking the metformin?

There are other types of diabetes than T2 and T1, eg MODY, T3c. I'm wondering if any of those can be temporary, or at least on/off. T1 diabetics sometimes get a honeymoon period when they start insulin and don't need it for a while...

Do you know what tests you've had done other than the hba1cs?

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Hey, so I did the bloods when I had symptoms and still continue to have symptoms now- in all honesty, I never went to the dr with my symptoms because I thought I was just overworked as I am a student nurse, so have uni, placement, work, gym etc.

I have never tested positive for covid but believe I had it during the first lockdown before the tests were available as I worked in community services- I have had all 3 of my vaccines. My vaccines were way before my HbA1c.

They did a full blood test so have done my hormones (my sister has hypothyroidism and mum has close levels), blood count, etc. Had the ketone test at the drs which also showed ketones in my urine. My levels were low before taking metformin, I haven't seen a change in my finger prick tests because they were never high to begin with. Which is also making it hard for me to know what carbs to cut etc because I don't see high readings after eating!

My other worry is that they tested the my hba1c in may and I have only now just received this diagnosis 3 months later after hearing nothing from my gp so I'm worried about how my bloods have been affected in the meantime without any treatment if I do actually have diabetes.

HSSS said:

When are you taking the readings

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When I wake up, before meals, 2 hours after meals and before I go to sleep

EllieM said:

That's a pretty comprehensive testing regime. My suggestion would be to go back to your GP, show him/her your readings and ask if they have considered that you have a condition that makes your hba1c inaccurate? How can you have an average bg of 11 if you haven't managed to achieve any readings over 7? (I guess you could set your alarm to do one 3am reading to demonstrate that it's not going high overnight).

Alternatively, if you are a nurse, I don't suppose you have any medical colleagues you can consult? (I appreciate this may be an option you may not want to take up. )

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Thanks Ellie, I showed my GP my readings for the last 2 weeks and he said them being low is irrelevant because the hba1c indicates diabetes! I think I will start testing at 3am until my free libre arrives. I work within mental health so our patients have other teams that advise them on their diabetes so there isn't anyone I can talk to unfortunately