Inaccurate Hba1C tests

SuperRob · Apr 13, 2016

Only in the last year have i found out that my seemingly normal Hba1c tests have been giving me totally wrong readings (after having Type 1 for 16 years at the time). I was referred to a blood doctor and he diagnosed me with Well compensated Haemolysis and haemolytic anaemia. In normal terms, basically my liver destroys young blood cells before they are old enough but to counter this my bone marrow produces them at the same rate, So instead of lasting 90 days they were being killed off every 30-40 days, therefore the Hba1c test (carried out every 90 days) will always seem ok. Instead I have to get a Fructosamine test which isn't done in Scotland. I vaguely remember being told something about Oxford or Cardiff or something.

My question is this:
Has anyone else experienced higher blood sugars whilst having a seemingly normal HBA1c??

Brunneria · Apr 13, 2016

Hi and welcome!

Can you guestimate the inaccuracy, based on your meter averages over the last 90 days or so?

AndBreathe · Apr 14, 2016

SuperRob said:
Only in the last year have i found out that my seemingly normal Hba1c tests have been giving me totally wrong readings (after having diabetes for 16 years at the time). I was referred to a blood doctor and he diagnosed me with Well compensated Haemolysis. In normal terms, basically my liver destroys young blood cells before they are old enough but to counter this my bone marrow produces them at the same rate, So instead of lasting 90 days they were being killed off every 30-40 days, therefore the Hba1c test (carried out every 90 days) will always seem ok. Instead I have to get a Fructosamine test which isn't done in Scotland. I vaguely remember being told something about Oxford or Cardiff or something.

My question is this:
Has anyone else experienced higher blood sugars whilst having a seemingly normal HBA1c??

My finger prick testing HbA1c estimations and lab HbA1c levels are rarely close. I find it frustrating, but it seems consistent. I did look at the fructosamine test some time ago, but would have to do that privately, or overseas. I'm overseas currently, but it appears to be a particularly specialised test, and so would be done in a different country to where I am now.

On that basis, I shelved the idea and am just reconciled to things never really closely marrying up. My finger prick tests suggest my HbA1c would be lower than the lab results show, so it's in the safer direction, in my view.

Good luck with the test. I'd be fascinated to hear how you get on.

SuperRob · Apr 14, 2016

AndBreathe said:
My finger prick testing HbA1c estimations and lab HbA1c levels are rarely close. I find it frustrating, but it seems consistent. I did look at the fructosamine test some time ago, but would have to do that privately, or overseas. I'm overseas currently, but it appears to be a particularly specialised test, and so would be done in a different country to where I am now.

On that basis, I shelved the idea and am just reconciled to things never really closely marrying up. My finger prick tests suggest my HbA1c would be lower than the lab results show, so it's in the safer direction, in my view.

Good luck with the test. I'd be fascinated to hear how you get on.

I get the test done frequently now instead of the Hba1c test. I'm in scotland and its done throught the NHS and my diabetic clinic because of the incorrect Hba1c tests they said it was necessary.

SuperRob · Apr 14, 2016

Galja said:
Yes, but in my case it was a malfunctioning meter that had been in the sun in Florida.

It would be interesting to see how much a fructosamine test is out of pocket

Evidently, some things can skew the results of this test. Read

https://labtestsonline.org/understanding/analytes/fructosamine/tab/test/

Article states that you can't do the test by mailing it since 2002 but the article states th necessity for your condition

This Hba1c test was carried out with a proper analysis machine at my clinic every 3 months, therefore an inaccurate meter isnt possible for me. I dont have to pay for the test thankfully

SuperRob · Apr 14, 2016

Brunneria said:
Hi and welcome!

Can you guestimate the inaccuracy, based on your meter averages over the last 90 days or so?

Not really, I dont know the calculations or anything. But my average blood sugar is probably around 14-20 and my Hba1c was that of an average of 4-5

Bluetit1802 · Apr 14, 2016

I did once ask about a fructosamine test at my Health Centre as my HbA1c tests are nothing like my finger prick averages (and I average all my tests throughout the day, between 8 and 10 per day). I was told categorically they do not do them. I am now relying on my own finger pricks rather than my HbA1c, which is always a lot higher, even after using the conversion table from whole blood to plasma blood.

SuperRob · Apr 21, 2016

Bluetit1802 said:
I did once ask about a fructosamine test at my Health Centre as my HbA1c tests are nothing like my finger prick averages (and I average all my tests throughout the day, between 8 and 10 per day). I was told categorically they do not do them. I am now relying on my own finger pricks rather than my HbA1c, which is always a lot higher, even after using the conversion table from whole blood to plasma blood.

I was told the same, apparently it isn't done in Scotland and the blood sample is sent off to England? don't quote me on that but I kinda remember being told something along those lines

SuperRob · Apr 21, 2016

Galja said:
And you are absolutely on the money that the fructosamine test is more accurate with your condition. I am wondering in a way whether we all should occasionally have this test even without your condition as it tests for the past couple weeks so if we have had an infection or some radical dietary change or some other reason for a dip or spike in the bloodsugars, it seems this test might be more accurate as to the sources of changes.

Thank you for bringing this subject to everyone's attention

That's quite alright I do know that it is quite a peculiar test and not done on a regular basis for the majority of diabetics. My paediatric doctor is still trying really hard to get in analysed in Scotland as she thinks others maybe in the same position as me. It would be an interesting test to carry out, maybe on a selection of diabetics to get a general view of how to interpret data?

SuperRob · Apr 21, 2016

Galja said:
Yes, but in my case it was a malfunctioning meter that had been in the sun in Florida.

It would be interesting to see how much a fructosamine test is out of pocket

Evidently, some things can skew the results of this test. Read

https://labtestsonline.org/understanding/analytes/fructosamine/tab/test/

Article states that you can't do the test by mailing it since 2002 but the article states th necessity for your condition

yes I can relate to the haemolytic anaemia, there was a few others things he told me they noticed which may or may not be something to do with the problem.

Diabetic Krissy · Apr 21, 2016

SuperRob said:
Only in the last year have i found out that my seemingly normal Hba1c tests have been giving me totally wrong readings (after having Type 1 for 16 years at the time). I was referred to a blood doctor and he diagnosed me with Well compensated Haemolysis and haemolytic anaemia. In normal terms, basically my liver destroys young blood cells before they are old enough but to counter this my bone marrow produces them at the same rate, So instead of lasting 90 days they were being killed off every 30-40 days, therefore the Hba1c test (carried out every 90 days) will always seem ok. Instead I have to get a Fructosamine test which isn't done in Scotland. I vaguely remember being told something about Oxford or Cardiff or something.

My question is this:
Has anyone else experienced higher blood sugars whilst having a seemingly normal HBA1c??

I have to have fructosemine test as I have a variant of hemoglobin.. I only found this out a couple of weeks ago after 2 years of being told to re do Hba1c as they couldn't get a result. I wouldn't know if my readings are higher than the Hba1c as I never actually got those results... I wonder how many people are getting their Hba1c's done when they actually need the fructosemine test?!

Bluetit1802 · Apr 21, 2016

Diabetic Krissy said:
I wonder how many people are getting their Hba1c's done when they actually need the fructosemine test?!

Well certainly all the anaemic Type 2s at my Health Centre, plus anyone else with abnormal haemoglobin.

Diabetic Krissy · Apr 21, 2016

Bluetit1802 said:
Well certainly all the anaemic Type 2s at my Health Centre, plus anyone else with abnormal haemoglobin.

This makes me sad... I thought it was bad me having 2 years of no test but it looks like a lot of people are having the wrong test alltogether!! Grumble Grumble...

BeccyB · Apr 21, 2016

If the NHS can't provide you with a suitable test I would consider asking them to fund a CGM as otherwise you have no way of telling if your tests are missing big swings in BS? Don't know if anyone else has any idea whether this would stand a chance?? If it does then everyone will be praying for abnormal haemoglobin

ronialive · Apr 21, 2016

Hi, I live in Bristol. wHEN I WAS PREGNANT I HAD FRUCTOSAMINE TESTS DONE THROUGHOUT THE OREGANANCY WHICH THEY SAID WAS NORMAL PRACTISE ACROSS THE COUNTRY AS AN hbaIC TAKE TOO LONG FOR A REUSLT AND THEY NEED A MUCH SHORTER DURATION. sorry for caps but don't want to retype

Diabetic Krissy · Apr 22, 2016

ronialive said:
Hi, I live in Bristol. wHEN I WAS PREGNANT I HAD FRUCTOSAMINE TESTS DONE THROUGHOUT THE OREGANANCY WHICH THEY SAID WAS NORMAL PRACTISE ACROSS THE COUNTRY AS AN hbaIC TAKE TOO LONG FOR A REUSLT AND THEY NEED A MUCH SHORTER DURATION. sorry for caps but don't want to retype

That's strange. I was told a Hba1c takes 2-3 days to get results but a fructosemine test takes 3 weeks... that's why I'm still waiting for my results.

BeccyB · May 3, 2016

ronialive said:
Hi, I live in Bristol. wHEN I WAS PREGNANT I HAD FRUCTOSAMINE TESTS DONE THROUGHOUT THE OREGANANCY WHICH THEY SAID WAS NORMAL PRACTISE ACROSS THE COUNTRY AS AN hbaIC TAKE TOO LONG FOR A REUSLT AND THEY NEED A MUCH SHORTER DURATION. sorry for caps but don't want to retype

Diabetic Krissy said:
That's strange. I was told a Hba1c takes 2-3 days to get results but a fructosemine test takes 3 weeks... that's why I'm still waiting for my results.

I think when they said "shorter duration" they meant it tests over a shorter duration, ie 30 days vs 90 for Hba1c, rather than it's quicker to get a result.

Bluetit1802 · May 3, 2016

Yes, indeed, the fructo test averages glucose over a much shorter duration than the HbA1c does.
I get my HbA1c results (over the phone) within 2 days.

Diabetic Krissy · May 3, 2016

Ah!! I get it now haha.. sorry I can be a bit dim sometimes haha... I got my results... need to half it as the fructosemine is 517 which is about 13% Hba1c wise... oops... but am working with my nurse to sort it out!!! it has depressed me though.. knew it would be bad but having it confirmed sucks haha.

AndBreathe · May 3, 2016

Diabetic Krissy said:
Ah!! I get it now haha.. sorry I can be a bit dim sometimes haha... I got my results... need to half it as the fructosemine is 517 which is about 13% Hba1c wise... oops... but am working with my nurse to sort it out!!! it has depressed me though.. knew it would be bad but having it confirmed sucks haha.

Is it fair to assume the 13% is considered the HbA1c equivalent?

Assuming the foregoing is correct, at least you now have a starting point from which you can work and have some confidence. Do you and your team have any ideas for moving forward?

Good luck with it all.

Inaccurate Hba1C tests

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