Not diabetic but go below 3mmol BG?

Seanm1 said:

It's a long story: was diagnosed with type 2 diabetes after spikes to 11.5 bg in July, took Metformin and my H1ac was 5.5. Have now had diabetes 2 diagnosis retracted and have stopped medication. I have neuropathic symptoms: shaky weak hands, numb, cold feet, burning sensation in right thigh etc since May, have had CT scan on internal organs: all ok, had MRI on brain and all ok. I put a Libre monitor in my arm last week and my bg keeps dropping below 4 mmol, this morning it was 2,9. I have spoken with my doctor today and saw a diabetes nurse on Monday and they are both completely unconcerned. Isn't a bg below 3 dangerous? I feel stuck, I don't know what to do?

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Always worth checking by needleprick with the low ones as cgm not always as accurate. Mine goes down for example if I’ve been lying on that arm.

Seanm1 said:

this morning it was 2,9.

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If your actual glucose level was as low as 2.9 you would be feeling it, shaky, tired, confused.
No home testing method is particularly accurate ,the finger prick meters are only +/-15% accurate, I have no idea how accurate the sensors are but as its not actually blood they are testing and the advice is to check them with a finger prick, I wouldn't think they are much better.

Seanm1 said:

It's a long story: was diagnosed with type 2 diabetes after spikes to 11.5 bg in July, took Metformin and my H1ac was 5.5. Have now had diabetes 2 diagnosis retracted and have stopped medication. I have neuropathic symptoms: shaky weak hands, numb, cold feet, burning sensation in right thigh etc since May, have had CT scan on internal organs: all ok, had MRI on brain and all ok. I put a Libre monitor in my arm last week and my bg keeps dropping below 4 mmol, this morning it was 2,9. I have spoken with my doctor today and saw a diabetes nurse on Monday and they are both completely unconcerned. Isn't a bg below 3 dangerous? I feel stuck, I don't know what to do?

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You were diagnosed on the basis of a single blood glucose test? No hba1c? What do you mean retracted? Because it was always wrong or that you now have normal levels (not the same thing at all)? Diabetes is a disease of high glucose not low. The lows almost always come from medications dealing with the highs. Though there are a few other less common conditions that can cause lows. Do the lows follow a high? Or are they isolated in amongst normal levels?

4mmol is the level used for those on hypoglycaemic medication to avoid dangerous lows. Non medicated healthy people often dip into the 3’s if they’ve not eaten for a while or have exercised a fair bit. The libre isn’t totally accurate and should be checked by a meter (also not perfectly accurate) particularly if there’s a chance you were lying on the sensor at the time.

Have they checked things like b12 (U.K. minimum levels are only 160 yet japans are 500!) that can cause many neurological symptoms even if they claim they are low/normal. Same with vitamin d, iron and ferritin. Be highly suspicious of any of these if they aren’t close to the top of the (appallingly low) ranges. Many people are symptomatic below half way and improve when raised.

Seanm1 said:

It's a long story: was diagnosed with type 2 diabetes after spikes to 11.5 bg in July, took Metformin and my H1ac was 5.5. Have now had diabetes 2 diagnosis retracted and have stopped medication. I have neuropathic symptoms: shaky weak hands, numb, cold feet, burning sensation in right thigh etc since May, have had CT scan on internal organs: all ok, had MRI on brain and all ok. I put a Libre monitor in my arm last week and my bg keeps dropping below 4 mmol, this morning it was 2,9. I have spoken with my doctor today and saw a diabetes nurse on Monday and they are both completely unconcerned. Isn't a bg below 3 dangerous? I feel stuck, I don't know what to do?

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If your fasting, pre meal levels are non diabetic, then you are having spikes over 10mmols after food? Do you know what you ate?
Did you show, your doctor your graphs?
No c-peptide test?
No insulin tests?

I would ask your GP, not your dsn, for a referral to an endocrinologist who has experience with hypoglycaemia.

Have a read of the reactive hypoglycaemia forum.
I'm not saying you have hypoglycaemia, but there is a lot of knowledge similar to your situation.

Why this rings a bell of similarity to myself is that I was misdiagnosed T2, and I wasn't right and being told by GPs that I did, even though my hba1c was in normal levels, my fasting was normal but I was in diabetic high levels when I had a carb laden meal.

Hope this helps.

Hi and welcome!
other ppl have addressed your diagnosis, and your blood-glucose readings.

So I am going to talk about your neuropathy symptoms.
T2s can go years with high bgs before they get diagnosed. Consequently, it is perfectly possible for them to develop neuropathy comparatively early. However, it is not very common. It usually takes a few years.

There is another possible cause for neuropathy symptoms, and it is one that doctors often miss:
Vitamin B12 deficiency.
I will attach a couple of links below, if you want to learn more.
It is a fairly easy thing to treat (vit supplements or injections from doc) and the symptoms are usually reversable.

Seanm1 said:

It's a long story: was diagnosed with type 2 diabetes after spikes to 11.5 bg in July, took Metformin and my H1ac was 5.5. Have now had diabetes 2 diagnosis retracted and have stopped medication. I have neuropathic symptoms: shaky weak hands, numb, cold feet, burning sensation in right thigh etc since May, have had CT scan on internal organs: all ok, had MRI on brain and all ok. I put a Libre monitor in my arm last week and my bg keeps dropping below 4 mmol, this morning it was 2,9. I have spoken with my doctor today and saw a diabetes nurse on Monday and they are both completely unconcerned. Isn't a bg below 3 dangerous? I feel stuck, I don't know what to do?

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Hi Sean, when (roughly in the day) were your numbers very low?

I know when I use the Libre system, I can have compression lows. That is when the sensor loses the plot a bit when we lie on it, asleep.

The Libre always reads very low for me, with projected/estimated HbA1cs running around 10 below venous blood, lab analysed tests. There are conditions that can lead to low blood glucose, but certainly worth validating the Libre findings, before digging too deeply into other causes.