Told to raise HbA1c

[ann34+]

Had my HbA1c a few weeks ago and mine was 53 (7%) and the hospital doctor said that is exactly where you want it to be. I though to myself it's not really as I would like it nearer 48 (6.5%).
I told him I try to manage my BG as tight as possible and tend to be a little obsessive about the numbers, to which he replied "most people with diabetes just get on with their lives". Do they??

Agree with others - this is a very irritating comment. Do not let it get to you. Doctor can suggest 7.0% without ignorant comments - keeping at 7% is almost as difficult as keeping at 5.5%, or 6% when there are wide variations of insulin need - i had years and years of keeping to these and now have to keep to 7.0%. I had numerous such comments over 30 -35 years ago, no pump, 4 tests a day, and using , at that time, due to hormones, anything from 17 units to 44 units a day, and trying to swim regularly. Told i was obsessive by some docs, and by nurses only to test at all every other day etc. Unfortunately, at that time, obsessive was the only way to be - not nice but no one suggested any alternative at all - with that sort of variation there was no choice - i do not think anyone really heard me. Now a lot of testing is ok, and hopefully soon CGM, and smart pumps - all really necessary especially as studies show that blood glucose varies more than was realised, and that very large numbers of Type ones will unknowingly go hypo sometime during at least some nights of the week.
Hypos are not good, ok at first but over time you may - it took me very little time at all - become hypo unaware, which is what your doctors are worried about. Then even so called non serious ones can take days for your brain to recover from and get out of brain fog. If you have no evening basal dance nights, and CHO as well, not sure where your insulin is coming from - maybe you still produce a bit - ask for a C-Peptide test to start with if you have not had one.. the problem with newish diagnosis is, in my experience, it might be that exercise stimulates virtually negligible insulin production or makes it work better. Though i cut insulin and had a lot of CHO before a swim, with no basal at all, i passed out in the pool and nearly drowned within a couple of years of diagnosis, and also regularly had night hypos after swims, and the following night, with no basal - so maybe your doctors are aware of possible dangers?

 

[ann34+]

I thought that might be the case. I only get hypos during the night after I've been dancing. Even if I eat a fair amount of carbs with no insulin (and no evening basal) I still have a hypo. This is twice a week at the moment as that's how often I'm teaching dance at the moment.

Hi, Charlie, i have just noticed that I posted my reply to Birchy66, then got your reply (the 2nd paragraph) stuck on also, instead of it going separately. Apologies. just to summarise, the doctors are probably worried that your HbA1c is lower as it includes the hypos which bring down the average, and that generally it is best to avoid hypos - they are potentially dangerous and also induce temporary insulin resistance, or may do, so you could swing up as well, so getting caught in a cycle. Though as mentioned in the other reply, i would first ask for a C peptide test. If you do have none of your own insulin and no night basal on dance nights, surely you are at serious risk of ketones by morning, hypos during the night notwithstanding? (unless your morning basal is acting as a 24 hour one with the added exercise?) Ann

 

[ann34+]

Had my HbA1c a few weeks ago and mine was 53 (7%) and the hospital doctor said that is exactly where you want it to be. I though to myself it's not really as I would like it nearer 48 (6.5%).
I told him I try to manage my BG as tight as possible and tend to be a little obsessive about the numbers, to which he replied "most people with diabetes just get on with their lives". Do they??

Hi, Birchy66, Apologies for the extra paragraph in your reply - as explained above, i got replies muddled, i think i just got so annoyed when i read your post, realising that some doctors were apparently still making such stupid comments. These can be hurtful and are completely pointless and sap motivation. Next time remind him or her that type one diabetes still leads to a lot more hospital admissions, more ill health, more costs to the NHS treating various complications etc, (and that if comprehensive studies regarding adults were done even more problems and costs might be uncovered - see the recent unsettling study by Bristol university concerning children - http://www.bristol.ac.uk/news/2015/april/type-1-diabetes.html. ) Surely your doctor should be welcoming the fact that you that you are a bit obsessive about your numbers - and appreciating that by being that way you are probably helping to save NHS costs. At the very least, the more you watch your numbers the less likely you are to be admitted to hospital with DKA or serious hypos. Ann

 

[Charlie Tudgay]

Hi, Charlie, i have just noticed that I posted my reply to Birchy66, then got your reply (the 2nd paragraph) stuck on also, instead of it going separately. Apologies. just to summarise, the doctors are probably worried that your HbA1c is lower as it includes the hypos which bring down the average, and that generally it is best to avoid hypos - they are potentially dangerous and also induce temporary insulin resistance, or may do, so you could swing up as well, so getting caught in a cycle. Though as mentioned in the other reply, i would first ask for a C peptide test. If you do have none of your own insulin and no night basal on dance nights, surely you are at serious risk of ketones by morning, hypos during the night notwithstanding? (unless your morning basal is acting as a 24 hour one with the added exercise?) Ann

Yes I am on a 24hr basal (Levemir) so I do still have some insulin on board, I have also never had a ketone level above 0.8 so don't know if that's because I must be producing some of my own insulin still.
The doctors have told me I have to wait till three years diagnosis before a C peptide test.
And I had slow onset symptoms for 5 months before I finally admitted to myself I had diabetes and must get checked at that point my ketones were 0.6.

 

[iHs]

I became type 1 in 1966 so next year it will be 50yrs for me. Since being 20yrs old, my hba1c was always about 7% every 6 months when I saw a consultant. Apsrt from the odd hypo now and again, my life was good with very little going wrong that could not be fixrd, such as csrpal tunnel and frozen shoulders when I was 45yrs. I only developed background retinopathy in one eye when I was 52yrs and that was when I was just under GP csre, didnt know a thing about carb rstios etc and had an a1c of 7.4%. Once I reduced my bg levels down a bit with more insulin, my background retinopathy went, my a1c dropped to 6.4% but this came with the price tag of experiencing the hypo feeling every day. It was because of the tight control that I got myself referred to see a consultant again with a view to getting a pump. The consutant gave me a firm telling off and would not apply for me to have a funded pump until my a1c was at least at 7% and to take the NICE bg tsrget of 6.5% with a pinch of salt as it might be ok for some but not for everyone esp if a low a1c means having low bg levels that eventually could lead to the bofy just getting used to them and losing some degree of awsreness.

 

[ann34+]

Yes I am on a 24hr basal (Levemir) so I do still have some insulin on board, I have also never had a ketone level above 0.8 so don't know if that's because I must be producing some of my own insulin still.
The doctors have told me I have to wait till three years diagnosis before a C peptide test.
And I had slow onset symptoms for 5 months before I finally admitted to myself I had diabetes and must get checked at that point my ketones were 0.6.

i would have a longer discussion with the doctor and ask why you need to wait 3 years for the C peptide test - perhaps he or she is already sure you are still producing some insulin. If so, you would need to find out what impact this might have on the exercise rules. Those rules that Jack412 posted are very good - i wish they had been around years ago - the main problem is learning how you and your insulin react to various amounts of exercise overall and at different times - when i have discussed this with doctors i have been told that everyone is different.

 

[darrenh04]

3 year for a c peptide test seems a long wait. I have had one and it was less than a year from diagnosis.
I tested negative for GAD anti bodies though, so this was a follow up to that to confirm if I was T1.

 

[smidge]

I've had the same too! I guess it's protocol really...better to be safe than sorry from their behalf. I'm nowhere near experience enough but if you can get away with a low hba with minimum hypos then why not.

It's strange how a single number can alter your mood though, ha.

Safe from being sued on their behalf - sorry on our behalf - blind, amputee, kidney failure, heart disease, neuropathy .......

Our health, our decision!!!

 

[Scardoc]

Got my HbA1c back the other day and it was 46 (6.4) which I am really happy with and would like to stay at this if not reduce it slightly, but the nurse has said to try and get it up to around 53. Is there a reason for this?
I've only been diagnosed about 13 months was 109 at diagnosis.

Thank you

This is a common topic and in your shoes I would be very happy and content with 6.4%. The target is 6.5% but my specialist who I have a lot of respect for, and who sadly left not long ago, told me that in future he expected 6.7% to become new the 6.5% as more studies are completed.

On a personal level, I know the majority of my hypo’s are caused when exercising and when I’ve had periods of inactivity through injury etc my Hba1C is in the high 6’s as opposed to the low to mid 6’s. The main concern is, however, hypo awareness and the importance of good hypo awareness cannot be stated enough. If, for example, I am driving along at 60/70mph I would like to know in advance if my blood sugars are getting too low. Yes, we all check before driving but what if our last insulin dose was a little high? What if I’m our running and some variable factor has caused my BG level to drop faster than anticipated? It is vital.

I used to crave a normal HbA1c but over time I have come to accept that I don’t need one because I am not normal anymore. Mr. Normal Pancreas has long since left the building. It’s also always worth remembering that the HbA1C is not effected by low or normal blood sugar levels, it is a measurement of glycated haemoglobin, so it really measuring prolonged periods of high blood glucose levels in the 6-8 weeks prior to the test.

 

[jrussell88]

HbA1c is a measure of your average blood glucose, but the out-of-normal-range highs and lows do the damage.

If your average is somewhere within the normal range then reducing the frequency and extent of highs and lows will improve your health, whereas a slightly higher or lower HbA1c is probably hiding more than it's revealing. However that can't be so easily measured in a clinic.

HbA1c has been a good tool to identify consistently high blood glucose levels; and it's easily checked, but to the man with a hammer every problem looks like a nail.

 

[LucySW]

HbA1c is a measure of your average blood glucose, but the out-of-normal-range highs and lows do the damage.

If your average is somewhere within the normal range then reducing the frequency and extent of highs and lows will improve your health, whereas a slightly higher or lower HbA1c is probably hiding more than it's revealing. However that can't be so easily measured in a clinic.

HbA1c has been a good tool to identify consistently high blood glucose levels; and it's easily checked, but to the man with a hammer every problem looks like a nail.

@jrussell88, really important - no, HbA1c *isn't* an average. It's an aggregate, a cumulative amount. Our blood hemoglobin becomes glycated at a threshold that is individual to each person. So HbA1c is a measure of how much excessive BG someone has experienced *over that threshold*.

The reason it's important that A1c isn't an average is that doctors (thinking that it is) see a low A1c as meaning a Type 1 is running too low and must be having hypos to 'balance out' the low A1c figure. So they push people to run their A1c higher. Which means complications damage.

But it's perfectly possible to have a low A1c and NOT have low blood sugars / risk hypos, if you work hard for good control and keep your BG consistent.

This matters very very much to T-1s' long-term health.

But your point that it's the out-of-range lows and highs that do the damage is completely bang-on. If people want to protect their future health, testing and recording highs and lows and then dealing with them is the way to go. That's why standard deviation is such a good tool, along with mean BG and A1c. It's on mySugr, which I use.

 

[June_C]

@jrussell88, really important: no, HbA1c *isn't* an average. It's an aggregate, a cumulative amount. Our blood hemoglobin becomes glycated at a threshold that is individual to each person. So HbA1c is a measure of how much excessive BG someone has experienced *over that threshold*.

The reason it's important that A1c isn't an average is that doctors (thinking that it is) see a low A1c as meaning a Type 1 is running too low and must be having hypos to 'balance out' the low A1c figure. So they push people to run their A1c higher. Which means complication damage.

But it's perfectly possible to have a low A1c and NOT have low blood sugars / risk hypos, if you work hard for good control and keep your BG consistent.

This matters very very much to T-1s' long-term health.

Well, I've learned something else today. I also thought HBA1c was an average rather than a cumulative amount. Thanks for the info Lucy.

 

[LucySW]

June, There's lots of threads discussing this. I'll post some links later. Have to get something to feed kiddiewinkies on school holiday. Maternal guilt too strong.

 

[Dillinger]

I thought that might be the case. I only get hypos during the night after I've been dancing. Even if I eat a fair amount of carbs with no insulin (and no evening basal) I still have a hypo. This is twice a week at the moment as that's how often I'm teaching dance at the moment.

What's your evening bolus like? Try reducing that as well on dance nights; also try to eat complex carbs or drink one of those protein/carb shakes which should cover you for a while.

It is so depressing when you hear HCP pushing to increase HbA1c's - every single diabetic complication comes from high blood sugars. If you can get low HbA1c's without hypos you are doing brilliantly. So you just need to work out how to lose these hypos and you will be fine.

 

[Dillinger]

@jrussell88, really important - no, HbA1c *isn't* an average. It's an aggregate, a cumulative amount. Our blood hemoglobin becomes glycated at a threshold that is individual to each person. So HbA1c is a measure of how much excessive BG someone has experienced *over that threshold*.

Lucy; where did you get that information from? It makes sense to me but when googling "HbA1c average aggregate" all the results I could see talk about HbA1c as being an average.

Is there a technical link you could share?

Best

Dillinger

 

[LucySW]

It was Smidge who first raised this, and Phoenix has clarified it a bit as you'd expect. There are some references to link, and I'll get them out later when I'm on my PC rather than phone. The whole subj is very controversial though. As you'd expect. As far as I can see - I'm just a generalist who knows how to read critically, not like Phoenix and some others who clearly have a science background - what I've said above is substantiated by technical papers. The arguing goes on and on, though, so at some level the subject isn't entirely clear.

Part of the reason for this is that everybody just does treat HbA1c as an average. They take it as given.

I'll post links this evening. In my view this is one of the most important Qs for us. Like you, I aim to keep my mean BG as low as I safely can (and my A1c, albeit they're not the same!).

 

[LucySW]

@jrussell88, really important - no, HbA1c *isn't* an average. It's an aggregate, a cumulative amount. Our blood hemoglobin becomes glycated at a threshold that is individual to each person. So HbA1c is a measure of how much excessive BG someone has experienced *over that threshold*.

The reason it's important that A1c isn't an average is that doctors (thinking that it is) see a low A1c as meaning a Type 1 is running too low and must be having hypos to 'balance out' the low A1c figure. So they push people to run their A1c higher. Which means complications damage.

But it's perfectly possible to have a low A1c and NOT have low blood sugars / risk hypos, if you work hard for good control and keep your BG consistent.

This matters very very much to T-1s' long-term health.

But your point that it's the out-of-range lows and highs that do the damage is completely bang-on. If people want to protect their future health, testing and recording highs and lows and then dealing with them is the way to go. That's why standard deviation is such a good tool, along with mean BG and A1c. It's on mySugr, which I use.

Both these factors - avoiding hypos, and avoiding wild up/down swings - are why Bernstein's approach is so brilliant and why he is blindingly, stunningly obviously right.
Consistency is the key. It's his Law of Small Numbers, and he is right.

That is distinct from HbA1cs, though. Hemoglobin can't be un-glycated once it's been glycated. Running low, or hypo-ing, won't affect that at all. Our HbA1cs improve with time because those hemoglobin cells have died and the test is sampling new ones. - As I understand it. @phoenix, correct me if I'm wrong.

 

[LucySW]

Lucy; where did you get that information from? It makes sense to me but when googling "HbA1c average aggregate" all the results I could see talk about HbA1c as being an average.

Is there a technical link you could share?

Best

Dillinger

Dillinger,

I can't find all my links. What I've found includes a discussion started by you. So I'll have to look again when internet things behaving.

Here's what I have:

http://www.diabetes.co.uk/forum/threads/can-hba1c-be-too-low.68973/

http://www.diabetes.co.uk/forum/threads/normal-hba1c-levels-what-should-we-be-aiming-for.61797/

Shall we ask @phoenix?

LSW

Edit: the kind of statement I keep seeing in the literature is this:

"When blood glucose levels are high, glucose molecules attach to the hemoglobin in red blood cells. The longer hyperglycemia occurs in blood, the more glucose binds to hemoglobin in the red blood cells and the higher the glycated hemoglobin. ...(A) Once a hemoglobin molecule is glycated, it remains that way. A buildup of glycated hemoglobin within the red cell, therefore, reflects the (B) average level of glucose to which the cell has been exposed during its life-cycle [my emphasis]."

But A and B contradict each other. If glycation is permanent, i.e. low blood sugars will not unbond the glucose molecules, how can this say anything about mean blood sugar over a three-month period? Glycation occurred during a much shorter time interval. A few hours have been mentioned in the discussion. Doesn't this mean it's the spikes that trigger the glycation, so we're talking about a threshold here.

 

[phoenix]

I don't think that it's a threshold. If that were the case then you would have people with almost no glycated haemoglobin and that isn't the case/

There are glucose molecules in everyones circulation If you have a high concentration of glucose molecules then more of the red blood cells will meet up with glucose molecules and become glycated ie stuck to the haemoglobin molecules in the red blood cell. Once permanently bound, they will never come off . If you have a low concentration of glucose molecules then fewer of the haemoglobin molecules will be glycated.
However the intial process of the chemical reaction (glycation) is reversible and the whole process takes some time. Does this mean that if the glucose is rapidly lowered ie a short sharp spike then the process doesn't become final ?. I don't know, I think that is the case but have never been able to find the answer


Edit! well maybe I have. at least this is what a lab that provides HbA1cs for dogs and cats says
"Hemoglobin A1c concentrations are not significantly altered by acute or transient hyperglycemia, however they are changed by chronic
hyper or hypo-glycemia."
http://avidlaboratories.com/frames/whatsnew06.pdf
For complicated see: http://www.medsci.org/v09p0665.htm#B32
simpler see http://t1dn.org.au/our-stuff/learn-about-type-1/hba1c-explained/



I've put this video before but I think it's the best one I've found

 

[Spiker]

Lucy; where did you get that information from? It makes sense to me but when googling "HbA1c average aggregate" all the results I could see talk about HbA1c as being an average.

Is there a technical link you could share?

Best

Dillinger

It's definitely not an average in the technical sense. It is not an *arithmetic mean*. Technically it is a logarithmically decaying function. This means that your blood glucose 90 days ago has less effect on the HBa1c result today than your blood glucose 89 days ago, which has less effect than 88 days ago, etc etc. If it was a true average, an arithmetic mean, each of the 90 or so days BG would have equal impact on the HBa1c. They don't.

The question of whether HBa1c fails to record lows and only records highs is a separate question.