• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Genuinely confused

J

Jlewis

Well-Known Member
Messages
53
Type of diabetes
Prefer not to say
Treatment type
Tablets (oral)
So went for an appointment today and have been told they will be putting me on insulin because. One my overall blood test result went up and I've been losing weight...well I've been losing weight because I've been training a lot. I've been jogging to work and working out every night which I told them but they ignored and my blood glucose levels are totally fine. Heck at times they've been to low. Since testing I've never seen a number higher than 8 in my tests and that includes sickness and Christmas, birthdays etc. my problem is if they put me on insulin that could cause me serious problems because even right mow at nights after my training I've been getting readings of 3s and at the very extreme 2. So if I start taking insulin on top of that I'm in trouble. I of course told them exactly this but they dismissed it saying that those readings can be inaccurate and maybe it's higher when I'm not checking it...genuinely don't understand this. I have no symptoms I'm not going to the toilet me I've got loads of energy and feel great.
 
So what was your HbA1c? And what was the previous one? (The "overall" blood test result)

What medications are you currently on?

Are you T1 or T2?
 
Bluetit1802 said:
So what was your HbA1c? And what was the previous one? (The "overall" blood test result)

What medications are you currently on?

Are you T1 or T2?
Click to expand...
It was 7.9 now 8.1

No medication and well before hand neither as I had onset but it'll be type 1
 
Jlewis said:
It was 7.9 now 8.1

No medication and well before hand neither as I had onset but it'll be type 1
Click to expand...

Your HbA1c of 8.1% converts to 10.3mmol/l. This means that if your HbA1c is accurate, your average blood sugars over the past 2 to 3 months have been 10.3mmol/l.

My thoughts:

Either:
your HbA1c is inaccurate
Or
You are not catching your peaks when you test your own blood sugars, and/or post meal you are staying up higher for longer than you think.
Or
Your meter is wildly inaccurate

Have you considered trying a Libre sensor? That would help you discover what is happening 24/7 and would be something very useful to show your nurse/doctor.
 
if your type 1 you have no choice you need insulin. if type 2 they clearly are worried. getting fitter and losing weight should have resulted in a lower level so yes some thing needs doing. its a big jump from nowt to insulin if your type 2. basically if your type 2 your not necessary on insulin permanently im off it at the moment but i suspect i will need it again. you really need to know what you are so your mind can settle on the best route for you.
 
Frankly it's ridiculous. I'm now testing 4 times a day and every single one is under 6. Tonight after a jiu jitsu session they wrtr 3.2, the highest it has been is 5.3 and they want me to be on medication it's ridiculous
 
A hba1c of 8.1 is equivalent to an average blood sugar of 10.3. The target is to have a hba1c under 6.5, considerably lower than your, apparently rising, hba1c. It's completely reasonably that medication would be considered.

You're only testing 4 times a day? There's an awful lot of scope for you to be missing highs.

Your metre might be innaccurate, or you could have especially long lived red blood cells.

But before investigating either of those possibilities, I'd be getting a libre sensor to check if your missing highs. Because if you are, then knowing when that's happening will help with your insulin doses and timing.
 
Jlewis said:
Frankly it's ridiculous. I'm now testing 4 times a day and every single one is under 6. Tonight after a jiu jitsu session they wrtr 3.2, the highest it has been is 5.3 and they want me to be on medication it's ridiculous
Click to expand...

It is glaringly obvious that your meter readings are wildly different from the HbA1c results. Of the two, the HbA1c is much more likely to be accurate.

I would beg, borrow or steal another meter as a matter of urgency so that you can cross check your results.

The surgery blood tests are from equipment that is far more accurate than your meter.

Look at your readings again; they are completely at odds with your HbA1c. The readings you have given are also very low for a diabetic who is not on any medication.

Don't blame the surgery. Stop believing your very low readings from your meter until you have cross checked with another meter (preferably a different brand).
 
When you had 3s on your meter are you having very bad hypos? I would be. Of course you can get used to higher bgs but a contrasting hypo should be felt. Do you not have hypo awareness?
 
I gave my thoughts in post #4 and stand by them, but will add that testing 4 times a day is nowhere near enough to catch your peaks, some of which may be lasting a long time.

Either you have wonky red blood cells that skew your HbA1c, or your meter is defunct, or you are spending a lot of time high. To help with your investigations you need to test 1, 2 and 3 hours after meals, or buy a Libre sensor which will give you 24/7 readings. I agree that if you are going so low at times, insulin will be tricky to manage, so it all needs sorting.
 
LittleGreyCat said:
It is glaringly obvious that your meter readings are wildly different from the HbA1c results. Of the two, the HbA1c is much more likely to be accurate.

I would beg, borrow or steal another meter as a matter of urgency so that you can cross check your results.

The surgery blood tests are from equipment that is far more accurate than your meter.

Look at your readings again; they are completely at odds with your HbA1c. The readings you have given are also very low for a diabetic who is not on any medication.

Don't blame the surgery. Stop believing your very low readings from your meter until you have cross checked with another meter (preferably a different brand).
Click to expand...
I have and it's exactly the same
 
Jlewis said:
I have and it's exactly the same
Click to expand...

That only leaves the distinct possibility that your HbA1c is skewed due to wonky red blood cells - or you are misleading yourself with your testing times. I estimate my own HbA1c levels are between 3 and 6 mmol/mol's too high - which is why I mostly ignore them.

This is what NICE has to say about measuring HbA1c's when there are wonky red blood cells (this applies to T2s. No idea about T1s)

1.6.2 Use methods to measure HbA1c that have been calibrated according to International Federation of Clinical Chemistry (IFCC) standardisation. [new 2015]

1.6.3 If HbA1c monitoring is invalid because of disturbed erythrocyte turnover or abnormal haemoglobin type, estimate trends in blood glucose control using one of the following:

  • quality-controlled plasma glucose profiles

  • total glycated haemoglobin estimation (if abnormal haemoglobins)

  • fructosamine estimation. [2015]
1.6.4 Investigate unexplained discrepancies between HbA1c and other glucose measurements. Seek advice from a team with specialist expertise in diabetes or clinical biochemistry. [2015]

https://www.nice.org.uk/guidance/ng28/chapter/1-Recommendations#blood-glucose-management-2

 
Jlewis said:
I have and it's exactly the same
Click to expand...

O.K. - would have helped if you had stated that up front.

So - when are you testing?

Very first thing in the morning (fasting)?

Before a meal, one and two hours after first bite?

Very last thing at night?

If you are running such low BG levels then what symptoms did you have which caused you to be investigated for diabetes and the diagnosed as potentially T1? Or was this a routine screening?

Have you had any other tests (such as GAD) to confirm a T1 diagnosis.

All we have from you so far is a list of extremely low BG readings and the statement that you are not on any medication. You also haven't replied to the question about symptoms (or lack of them) when you have readings which equate to a serious hypo. It is difficult to suggest stuff if you keep holding back information.
 
If your running at BG of 2-3 then I would be surprised if you could take a measurement. Ok so I would advice you to ask for a frusodamine (think that’s how it’s spelt) test as it will indicate what your BS has been like over the previous three weeks.
The fact that your not on insulin and were on a diet/lifestyle control and now they are talking about insulin is very very weird. If you were ill enough to be considered type 1 then they would have put you on medication straight off and if you are type 2 then there are many oral agents that they could have tried. Sorry but the threads are not matching enough to make a scarf.
 
LittleGreyCat said:
O.K. - would have helped if you had stated that up front.

So - when are you testing?

Very first thing in the morning (fasting)?

Before a meal, one and two hours after first bite?

Very last thing at night?

If you are running such low BG levels then what symptoms did you have which caused you to be investigated for diabetes and the diagnosed as potentially T1? Or was this a routine screening?

Have you had any other tests (such as GAD) to confirm a T1 diagnosis.

All we have from you so far is a list of extremely low BG readings and the statement that you are not on any medication. You also haven't replied to the question about symptoms (or lack of them) when you have readings which equate to a serious hypo. It is difficult to suggest stuff if you keep holding back information.
Click to expand...
Geez relax sorry if I didn't mention every single thing. And yes I am testing all of those. I didn't have any symptoms it was picked up on a test for something else. Ive had 0 symptoms
 
How much weight have you lost? At the moment you've got two symptoms of T1: weight loss and high HbA1C. I agree the HbA1C could be wonky because you have a weird metabolism, so getting a fructosamine test sounds like a good idea (it measures average glucose over last 3 weeks).

However, if you're not getting hypo symptoms at a bs of 2 to 3 that is also weird...

I'd suggest make a concerted effort to put on a couple of kgs before going back to the clinic with your queries and evidence, just to remove that thread in the T1 argument. Having said that, if you are T1 it's only a matter of time till you go on insulin.

Good luck.
 
Jlewis said:
So went for an appointment today and have been told they will be putting me on insulin because. One my overall blood test result went up and I've been losing weight...well I've been losing weight because I've been training a lot. I've been jogging to work and working out every night which I told them but they ignored and my blood glucose levels are totally fine. Heck at times they've been to low. Since testing I've never seen a number higher than 8 in my tests and that includes sickness and Christmas, birthdays etc. my problem is if they put me on insulin that could cause me serious problems because even right mow at nights after my training I've been getting readings of 3s and at the very extreme 2. So if I start taking insulin on top of that I'm in trouble. I of course told them exactly this but they dismissed it saying that those readings can be inaccurate and maybe it's higher when I'm not checking it...genuinely don't understand this. I have no symptoms I'm not going to the toilet me I've got loads of energy and feel great.
Click to expand...

Gauging by your profile pic, you look very lean. I don't know if this was taken before the weight loss or not, but if you are losing weight (Based on your photo) it doesn't seem like it would be a good idea. It doesn't look like you have much fat to lose, so that more then likely means you are losing muscle mass. If you are type 1 that would make sense, so insulin would be prescribed anyway, regardless.

Maybe I missed it, but what are you are training for exactly? Get fitter, sport? You're jogging to work, in the gym everyday. It just seems like you are way over doing it and running yourself into the ground. So, either your diet doesn't match the training to maintain or you lack insulin and are losing mass because you're type 1. Your body is just breaking down muscle to get the protein it needs. Or it's both.

I just find it unlikely to be a bad HBA1c and it would be pretty unlikely to be a red blood cell issue, but certainly not impossible. The fact you test 4 times a day, leaves a lot of room for highs to go unnoticed. I guess you could ask to have the HBA1c done again, but they probably won't. 7.9 and 8.1 are pretty close together. That's seems reliable to me, or you have some other issue no one knows about that is causing odd levels?

I'd go with what caterpillar said about the libre sensor, this I think would probably sort out your bg level and conflicting HBA1c problem. And find out if you are type 1

Good luck
 
Back
Top