Hb Variants

S

Sous123

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Relationship to Diabetes
Type 2
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Hi
Apologies for the long post!
Diagnosed with type 2 diabetes from two Hb1ca tests 4 weeks apart, first 58 and 53 no symptoms. Last test prior to this test was 18 months ago and was 36, previous tests in the 20’s apparently. Not overweight nor eat badly and dog walking etc.
Bought a blood glucose monitor 3 weeks prior to the 2nd test, usual testing, morning, some before lunch two hours after, some before tea and two hours after and occasional before bed. No readings have been beyond 7.5 (7.5 was only once) and normally are between 4.5 and 6. Got a free trial of libre 2 plus and was in range 100% between 3.9 and 8.5. Tried to get a private test that was sent to an nhs laboratory (ukas accredited) and they couldn’t separate the glycated haemoglobin from the rest of the rest of the haemoglobin due to a Hb variant and said because of this they couldn’t give an accurate result.
There was a note on my results from my gp test saying that I had a possible Hb variant but not mentioned by the nurse. Their note said
“Laboratory comment
Assay not UKAS accredited
HbA1c result may not be accurate due to the presence of a possible Hb variant. HbA1c result is NOT valid for diagnosis of diabetes, please send fasting plasma
glucose for diagnostic purposes.
Result can be used for
monitoring trends in glycaemic control but recommended
HbA1c targets may not apply.
A definitive diagnosis of Diabetes
Mellitus can be made
if two levels of HbA1c (greater than 4 weeks apart) are
>47 mmol/mol Hb.”
(which seems somewhat contradictory) doctors office said possible variant, other nhs hospital says I do have a variant.
Has anyone been diagnosed with a Hb variant and had strange Hb1ca results that don’t match their blood glucose monitoring results?
 
Sorry should mention first Hb1ca test was late June second test late July, blood glucose monitoring from early July til present day
 
Sous123 said:
Sorry should mention first Hb1ca test was late June second test late July, blood glucose monitoring from early July til present day
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I wonder if the fructosamine test would be suitable as it does not use glycosylated haemoglobin. It should be used when people have any haemoglobinopathies. You could ask your GP
 
Thank you for your response it’s very much appreciated. Not due back for another text until late January (was given 6months to “turn things around”) so will see what the results are then, if still high, then I will have no choice but to ask for alternative testing
 
Sous123 said:
Thank you for your response it’s very much appreciated. Not due back for another text until late January (was given 6months to “turn things around”) so will see what the results are then, if still high, then I will have no choice but to ask for alternative testing
Click to expand...
When there is a test that would give more reliable result then it would be a good idea to get it sooner rather than later as basing what you do on something which is either an underestimate or overestimate may mean you are making unneeded changes or not doing enough and that in itself may cause other problems.
 
I'm surprised that, if they are suspecting a haemaglobinopathy or anaemia, that they are just giving 6 months to turn it around. I think you are entitled to know what haemaglobinopathy was suspected and what your Hb was. If your serum or stored iron levels are low, you might need treatment to resolve that. If your iron levels are very low, they aren't just going to 'turn around' by January without a minimum of advice and possibly some supplementation. Plus, if they suspect anaemia related to an HBO (such as a sickle cell or thalassemia variant), you definitely need specialist support. Otherwise, another hba1c is going to be confounded and unclear.
It sounds very frustrating for you to be in this limbo with regards to both the possible diabetes and the other variable. I hope you are able get to speak to someone for more clarity about your results.
 
Sous123 said:
Thank you for your response it’s very much appreciated. Not due back for another text until late January (was given 6months to “turn things around”) so will see what the results are then, if still high, then I will have no choice but to ask for alternative testing
Click to expand...
This outlines the policy adopted by NHS Scotland for cases of reported haemoglobin variants.

HbA1c & Haemoglobin variants - RefHelp

HbA1c analysers & Detection of Haemoglobin variants HbA1c provides a measure of the amount of glucose attached to haemoglobin. The lab analysers that measure this will sometimes detect the presence of a possible haemoglobin variant. Variants may impact on HbA1c measurement by altering red cell...
apps.nhslothian.scot apps.nhslothian.scot
I do urge you to go back to your GP to get your result clarified and ask for the alternative tests without waiting until January.
 
Sorry to hear about the confusion you have been subject to with your lab results @Sous123

It does sound like there's something potentially unusual going on from the text quoted in the lab report.

Hope you can get to the bottom of it without too much faff. Sometimes you have to be quite assertive and persistent when your results are just a little outside the 'norm' (as people do when they have a rarer form of diabetes which HCPs may be less familiar with).

As @Leadinglights has said, Fructosamine always used to be the fallback method of examining longer-term glucose variation where differences in haemoglobin rendered HbA1c less reliable.

Would be handy if the different hospitals/labs could at least agree on whether or not there was a Haemoglobin Variant in play in your case though eh?!
 
BobbleHat said:
I'm surprised that, if they are suspecting a haemaglobinopathy or anaemia, that they are just giving 6 months to turn it around. I think you are entitled to know what haemaglobinopathy was suspected and what your Hb was. If your serum or stored iron levels are low, you might need treatment to resolve that. If your iron levels are very low, they aren't just going to 'turn around' by January without a minimum of advice and possibly some supplementation. Plus, if they suspect anaemia related to an HBO (such as a sickle cell or thalassemia variant), you definitely need specialist support. Otherwise, another hba1c is going to be confounded and unclear.
It sounds very frustrating for you to be in this limbo with regards to both the possible diabetes and the other variable. I hope you are able get to speak to someone for more clarity about your results.
Click to expand...
Had full bloods done at the same time and all results were fine
 
Sous123 said:
Had full bloods done at the same time and all results were fine
Click to expand...
I didn’t realise at the time of the 2nd that the note about the possible hb variant was meant about me I just thought that note was just a standard note put all all tests as this is the first time this year that my “tests” have been open to me on the nhs app. Although I did mention and show my readings in the 2nd appointment I got the standard response of “yes but that’s just a moment in time” I did try to argue but surely if all the “moments in time” are good surely that means something. Feels like they are just reading off a script and not really listening. When I questioned why it had gone up so much in that short time with no warning of pre-diabetes she just shrugged her shoulders and said it’s idiopathic (as in no explanation!) So for now, I keep testing (not all the time, some mornings, some before lunch and 2 hrs later, or before tea and 2 hours later) will continue gather all this information (and more “moments in time) so I can push things further if the next results haven’t changed. Although my weight wasn’t bad I had gain a couple of midlife pounds which I have lost, same with diet (not bad but always room for improvement) so that’s not a bad thing as can only make me healthier in other areas. Din’t worry i don’t have sickle cell or thalassemia, there are lots of very innocent variants that don’t cause any problems, but thanks for your concern.
I will get to the bottom of it.
This morning’s reading was 4.9, and I’m not on any medications as overall I’m perfectly healthy.
Also should mention there is no family history of diabetes either
 
Sous123 said:
I didn’t realise at the time of the 2nd that the note about the possible hb variant was meant about me I just thought that note was just a standard note put all all tests as this is the first time this year that my “tests” have been open to me on the nhs app. Although I did mention and show my readings in the 2nd appointment I got the standard response of “yes but that’s just a moment in time” I did try to argue but surely if all the “moments in time” are good surely that means something. Feels like they are just reading off a script and not really listening. When I questioned why it had gone up so much in that short time with no warning of pre-diabetes she just shrugged her shoulders and said it’s idiopathic (as in no explanation!) So for now, I keep testing (not all the time, some mornings, some before lunch and 2 hrs later, or before tea and 2 hours later) will continue gather all this information (and more “moments in time) so I can push things further if the next results haven’t changed. Although my weight wasn’t bad I had gain a couple of midlife pounds which I have lost, same with diet (not bad but always room for improvement) so that’s not a bad thing as can only make me healthier in other areas. Din’t worry i don’t have sickle cell or thalassemia, there are lots of very innocent variants that don’t cause any problems, but thanks for your concern.
I will get to the bottom of it.
This morning’s reading was 4.9, and I’m not on any medications as overall I’m perfectly healthy.
Also should mention there is no family history of diabetes either
Click to expand...
The 'variant' may not be clinically significant but may affect the accuracy of an HbA1C test.
 
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