Anomalous HbA1c Results

[silky1]

Good grief, what an awful time you have had! Do you think you are on the way back up now? Good luck!

Thank you - Sometimes I feel like I am - other times no - I'm completely devoid of energy. I have Fibromyalgia and my B12 is overdue - it's been a long time since I felt this wiped out (excluding my hospital ping pong in January) - I'm in a wheelchair for out and about - but mooch around the house and atm frequently getting spells of pain and weakness like I did when my Potassium levels were at their peak. Unfortunately, when you feel like this, it can be a vicious circle and not for the better

 

[silky1]

Wow! That sounds very scary indeed. Hope you can get it back down and wish you a speedy recovery x

It's down now - those numbers were when I was first diagnosed (after years of fighting the doctors) - more recently has been the Sepsis and Hyperkalemia (dangerously excess Potassium levels) - which occured because of the antibiotics I came home with (having had 3 IV as an inpatient) - they told me to just start taking my other meds and I had a really dangerous reaction - a consultant rang me at 9pm telling me to get to the hospital NOW - I said no - and he threatened to send an ambulance to get me - GULP - I now realise how dangerous it was.

My HbA1c has been steady at around 45 for three years - but I suspect it will be a fair bit higher this time as I've been on something of a self destruct

 

[Melgar]

Yes that sounds familiar. The Diabetes Nurse that I spoke to on the phone couldn't suggest anything other than attending the Diabetes Prevention programme but my Dad went on that for a year and although he did very well (lost 10kg and got his HbA1c out of the pre-diabetic range) I knew they would only tell me to eat sensibly and follow "the plate" which I've already been doing for several years. My Dad cut out cakes, biscuits, pork pies and cheese but I didn't eat any of those to begin with! I've never had a sweet tooth, don't eat between meals and only eat deserts on the rare occasion that we have a meal out. My Husband can't have Cow's milk or fruits (due to high salicylates) so we don't even have deserts in the house. I have an average of 14-20 units of alcohol a week, which I don't consider excessive, but as soon as I said that of course the DN leapt on it and told me that must be where I'm going wrong. It's literally the only "treat" I have in my life (1 glass of Wine with Dinner 5 nights a week and maybe 2 on a Saturday). If everyone that drank that much was diabetic, I think we'd all be diabetic!! It's very frustrating but I agree with you that they just want to put you in a "box" and won't hear that there could be another explanation. In my case, I think something must be causing the extreme discrepancies between the results, but they can't explain it and I think they'd rather I just accepted their results and kept quiet If my latest set of results are right though, all I've done is give up 1 sugar in tea once a day and that's brought it down from 44 to 37 but I'm sure that can't be right. Edit: typos and emoticons came out wrong!

To be honest I 'fired' my DN. Fired sounds dramatic I just stopped attending. I found them less than useful. They didn't listen. I fully expected them to suggest I should eat fewer parsnips after I tell them I am on less than 35 grams of carbs. That never happened of course, but once you tell them you are doing all the things they suggest and more they have nothing to say or suggest.

I do not drink, only because it causes me to have serious hypos. I definitely do have a sweet tooth. That has been the most painful thing to abstain from. I do have fruit, berries mainly with a blob of cream, but it's not the same. I have coeliac so I don't have breads, pastas and all those wonderful pastries. I miss those too. I am not at ease with my diet to be honest. It hasn't made much of a difference to my blood sugars, unlike abstaining from gluten which dramatically had a positive effect on my coeliac symptoms. My blood sugars are a different matter. Ed spelling.

 

[RayCox]

Dee, look like your eating a lot off carbohydrates I am down to pre diabetic readings. Cut the carbohydrates and Increase the fat in you diet. Give it a try?

 

[Dee_UK]

I finally got a call from the Hospital yesterday, telling me that the result of the Hba1c test I had in April was indeed unsound because of a faulty piece of equipment. I knew it had to be wrong but they insisted for months that I was pre-diabetic and that the lab met the highest quality standards, etc. etc. They offered me a repeat test but, since I had the one in May, which came back at 34 and 37, from 2 different labs, I don't want another unnecessary test, especially when I have zero confidence that the result will be accurate.

The problem goes further back than April though because my first NHS test was in February and that gave a reading of 43 vs the private test just 10 days later, which gave a reading of 35, which I now understand from many medical professionals simply cannot happen, so one of them was obviously wrong.

Then, the one I had in April came back at 45 and that's the one they're saying was faulty, so it's obvious the reading in February was incorrect as well.

So, if anyone on this forum has had an Hba1c result that surprised them on the NHS in the Bedfordshire area between February and May this year (could be even earlier), please ask to have a repeat test because they are now known to have been faulty. I believe the Hospital should be getting in touch with patients but they may only have contacted me because I complained.

I finally have closure to this episode but it has taught me that I know my own body and if you think something isn't right, stick to your guns and advocate for yourself, as they will otherwise fob you off and put you in their neat little box until proven otherwise. I have complained to the Hospital and written to my local GP surgery and MP demanding a full investigation as to how it can have happened. I dread to think how many people will have been told they're pre-diabetic or even diabetic on the basis of these dodgy tests.

Please do let me know if anyone here has had a similar experience, as it would be interesting to know how widespread and for how long the problem has been going on.

 

[Dee_UK]

I had an over 40 health check in Feb and was told I had high cholesterol. This was a shock because I have a BMI of 20.5, do regular cardio exercise and believe I follow a good diet. I therefore opted for a venous blood test, which also included HbA1c and was told my cholesterol was actually fine but that I had an HbA1c of 43, making me pre-diabetic.

This was also a shock so I decided to seek a 2nd opinion from a private GP a week later and got a result of 35! My local GP suggested a repeat test, which I had 6 weeks ago, but that came out even higher than the first one at 44!

The private GP then suggested sending identical samples taken from the same blood draw to both laboratories and his lab came back with 34 and the NHS lab 37, which are statistically not significantly different, but neither Doctor can explain the previous results, as I understand HbA1c can't fluctuate from 43 to 35 in one week and then from 44 to 34 or even 37 in the space of 6 weeks.

I'm wondering how common it is for HbA1c readings to be so inconsistent and if others have been given results that surprised them, but may not have been detected as anomalous because the repeat test was done by the same lab?

I'm guessing I'm fairly unusual in that I chose to have two samples analysed by two different labs within such a short timescale, so worry I could be the tip of the iceberg of patients being given unknowingly inaccurate results?

Has anyone else had a similar experience?

Apparently the issue at Luton & Dunstable Hospital is now well known and quite widespread. What I don't understand though is that they're saying the issue started in April but I had my first anomalous result on 23 February, which was contradicted by the private test I had 10 days later on 10 March... So I now know the NHS one in April was wrong, but that means the result in Feb was also wrong so the problem goes back further either than they realise or that they're admitting to

HbA1c testing information - Bedfordshire Hospitals NHS Trust

Updated 3 September 2024 We are currently contacting a number of patients in the Luton, South Bedfordshire and Hertfordshire areas to ask them to attend for a repeat blood test. […]

www.bedfordshirehospitals.nhs.uk