Unusable hba1c

[NatalieH]

Hi everyone,
New to this forum! I was diagnosed with type 2 in July. Problem is, I have something with my blood that means the hba1c is not able to be used diagnostically. So was diagnosed with glucose tolerance test.
My doctor suggested keto diet which I have followed and lost 2.5 stone, now with a healthy bmi.
When I was first diagnosed my morning fasting was around 4.6….since then it has crept up to around 6.7…..
I am not getting much support from my GP and have to wait until February to see the specialist team.
I thought that the numbers would go down with under 30 grams of carbs a day and losing the weight.
All other numbers seem to be ok. I’m just a bit stuck and don’t know what to do. Maybe I’m worrying too much. I’m 34 and just a bit lost.
Working really hard to try and put it into remission but I don’t know how to find out if I’ve succeeded when they can’t use my hba1c. Anyone else in a similar situation?
Thanks in advance!

 

[HSSS]

Usually hba1c is unreliable if you have other conditions that affect red blood cells or their turnover. Eg some forms of anemia. There is also a test called fructosamine that can be used, more commonly used in pregnancy.

the rise in morning fasting could be due to something called adaptive glucose sparing (or physiological insulin resistance) seen sometimes in keto and not considered a problem by those that understand it. Your dr sounds on the ball to suggest keto and hopefully won’t be too concerned. What specialism are they as it’s unusual for a type 2 not on insulin to get one in the U.K. 4.6 before the diet sounds unusually low for someone diabetic.

 

[NatalieH]

Usually hba1c is unreliable if you have other conditions that affect red blood cells or their turnover. Eg some forms of anemia. There is also a test called fructosamine that can be used, more commonly used in pregnancy.

the rise in morning fasting could be due to something called adaptive glucose sparing (or physiological insulin resistance) seen sometimes in keto and not considered a problem by those that understand it. Your dr sounds on the ball to suggest keto and hopefully won’t be too concerned. What specialism are they as it’s unusual for a type 2 not on insulin to get one in the U.K. 4.6 before the diet sounds unusually low for someone diabetic.

Thanks for your reply! Interesting regarding the glucose sparing! I would really like to find out then if I’ve perhaps been misdiagnosed.
I have a hererozygote D in my blood which means (I think) that only a percentage of my blood glucose shows up on the hba1c and therefor they don’t know what the actual level is. I was diagnosed with an oral glucose test which was 11.2 after 2 hours. And that was it.
I think they’ve sent me to the endocrinologist because of the issue with hba1c and how to monitor me long term. If keto can cause slight raised morning levels then I guess nothing to worry about. The only other question is if I go off keto I will probably end up on medication. I guess those are my choices

 

[ianf0ster]

Hi @NatalieH and welcome to the forum.
Don't worry about a fasting BG reading of 6.7, if you stay on Keto it will probably slowly drop down a little.
I'm actually in remission from Type 2 meaning my HbA1C is valid and has dropped down to 'normal # levels for about 2 yrs now, yet my morning pre-breakfast readings are still a little raised, however they don't go up much when I eat (I'm eating between 20gms and 40gms of carbs 0per day).

 

[EllieM]

The only other question is if I go off keto I will probably end up on medication. I guess those are my choices

Not necessarily at all. If I were in your position (and I'm not as I'm T1 and on insulin for life) I'd look to see what my bgs do 2 hours after a meal. If they go up by less than 2mmol/L they are probably fine? The weight loss should hopefully have helped ease any insulin resistance so it may be that long term you can tolerate more carbs, you won't know without a meter.

And I second @HSSS suggestion of a fructosamine test to see how your bgs are going. It's pretty standard for pregnant women because it reflects the last 2 or 3 weeks of blood glucose instead of 3 months....

Edited to add, and welcome to the forum

 

[NatalieH]

Not necessarily at all. If I were in your position (and I'm not as I'm T1 and on insulin for life) I'd look to see what my bgs do 2 hours after a meal. If they go up by less than 2mmol/L they are probably fine? The weight loss should hopefully have helped ease any insulin resistance so it may be that long term you can tolerate more carbs, you won't know without a meter.

And I second @HSSS suggestion of a fructosamine test to see how your bgs are going. It's pretty standard for pregnant women because it reflects the last 2 or 3 weeks of blood glucose instead of 3 months....

Edited to add, and welcome to the forum

Thanks for your reply! Perhaps the best thing to do is slowly introduce some more Carbs and take my post meal readings and see how I go. I’m getting a little bit unhealthily obsessed with eating and for my own anxiety I need to see if I can loosen the reigns a little. Many people in my family had poorly controlled type 1 and I’ve watched some pretty horrible things happen to them so I’m incredibly determined to be healthy but I need to find a better balance in my life.

 

[NatalieH]

Not necessarily at all. If I were in your position (and I'm not as I'm T1 and on insulin for life) I'd look to see what my bgs do 2 hours after a meal. If they go up by less than 2mmol/L they are probably fine? The weight loss should hopefully have helped ease any insulin resistance so it may be that long term you can tolerate more carbs, you won't know without a meter.

And I second @HSSS suggestion of a fructosamine test to see how your bgs are going. It's pretty standard for pregnant women because it reflects the last 2 or 3 weeks of blood glucose instead of 3 months....

Edited to add, and welcome to the forum

Thanks so much for replying this is wonderful forum! I will speak with my doctor about the fructosamine test. Haven’t heard of that before!
May I ask how long you’ve been eating such low carb? And if you find you can exercise ok on it? I’ve noticed I’m really struggling energy wise to workout which is a new thing for me and I hate it. Super type A personality here and hate finding my limitations!

 

[Antje77]

I’ve noticed I’m really struggling energy wise to workout

Are you eating enough?

 

[NatalieH]

Are you eating enough?

Honestly I suspect not. I have a terrible problem with “control” which is why I’m looking for some advice. I feel I’m getting perhaps a borderline eating disorder and am so scared to mess up my levels that I eat very little. Probably counterproductive.

 

[HSSS]

Honestly I suspect not. I have a terrible problem with “control” which is why I’m looking for some advice. I feel I’m getting perhaps a borderline eating disorder and am so scared to mess up my levels that I eat very little. Probably counterproductive.

Once you are adapted to low carb low energy shouldn’t be an issue. (A few weeks maybe) It’s important to still get enough food/energy from somewhere. It’s not about reducing carbs and keeping everything else low. That’s hunger and depravation. Add enough naturally occurring fats and protein to keep you going.