Great HbA1c result but got told off for it...

[ringi]

Remember that @Mel dCP

• Lost weight to get near an ideal BMI
• Reduced number of hypos
• Felt a lot better
• Reduced peaks of BG
• Refused how much inslin she uses
• And reduce A1c to a very low level for type1

No one who looks at the at the complete picture can't failed to be impressed with the result. However without all the other improvement the reduced A1c may have been harmful.

Also remember that about 50% of people with type1 now have type2 (inslin restiance) and hence a lower A1c due to using a lot more inslin is unlikley to be of benfit to them unless their A1c was high to start with.

Hence don't just focus on one number....

 

[LooperCat]

Remember that @Mel dCP

• Lost weight to get near an ideal BMI
• Reduced number of hypos
• Felt a lot better
• Reduced peaks of BG
• Refused how much inslin she uses
• And reduce A1c to a very low level for type1

No one who looks at the at the complete picture can't failed to be impressed with the result. However without all the other improvement the reduced A1c may have been harmful.

Also remember that about 50% of people with type1 now have type2 (inslin restiance) and hence a lower A1c due to using a lot more inslin is unlikley to be of benfit to them unless their A1c was high to start with.

Hence don't just focus on one number....

It’s also had the benefit of my frozen shoulder being much better, the the trigeminal neuralgia that I was days away from having surgery for has now pretty much gone.

 

[ickihun]

Rant alert

I had a raft of blood tests last Friday to investigate why I’ve been getting blood pressure drops when I stand up, and the nurse asked if I’d like her to take an HbA1c while she was at it - I jumped at it because my last one covered one month of no Libre and lots of carbs (and Christmas) plus two with Libre and keto, so didn’t really give me an accurate picture of how things have improved since I got it.

Phone rang this afternoon, it was the practice nurse. She just said that they’d got my results and my HbA1c was 43. And then silence. I assumed it was to give me time to gush, and I said how thrilled I was with such a good result. More silence.

They want me to drop my insulin and get it back up to 50.

I said no way, that 43 comes under “excellent control” on the chart they have on their wall, and that I was delighted. Cue a lecture about hypos, and I tried to explain that I don’t really have any, maybe one mild one a week (never at night), and that I never drop below 3mmol. She actually said she didn’t believe me! And wants me to come in so I can have hypos explained to me. I explained that having had T1 for 20 years, I was very experienced at having hypos, but I’m now managing it in such a way with my Libre as to make sure I don’t get them, and explained the “sugar surfing” methods of a glucose tab here, half a unit there to nudge my sugars into range if they’re drifting off. Apparently I must be having night hypos! I’m going to have to go in armed with printouts of my Libre traces to prove that I’m not - I haven’t had a night hypo since flippin’ January! We had the driving conversation and I explained that I run my sugars a little higher (6-7mmol) to drive, and she said I should be aiming for TEN

So that’s rather taken the shine off a result I’ve been working so hard to accomplish.



I also got cholesterol numbers, but I’m not quite sure how to interpret them, can the hive mind help? She didn’t seem too happy about those either.

Total 6.2; HDL 4.2; LDL 3.7; Trigs 1.2

Anyway, I’m seeing my GP at the end of the month to discuss it all, looks like I’ll have to go armed with my lever arch file of results and dig out the battle handbag again

/rant

I think due to so many deaths lately the nhs are being a tad over cautious here.
Is she aware you're low carbing? Is low carbing safe for type1s?
We are burying our friend next week who was living alone and suffered one too many hypos. We are all very very sad. He was in his 40s. One of his parents cannot make the funeral due to health logistics. They were just happy he was enjoying his life but wished he'd lived longer on less hypos.
Any dn worth her/his salt will be wanting to keep hypos out of your management.
Many don't get any.

 

[LooperCat]

I think due to so many deaths lately the nhs are being a tad over cautious here.
Is she aware you're low carbing? Is low carbing safe for type1s?
We are burying our friend next week who was living alone and suffered one too many hypos. We are all very very sad. He was in his 40s. One of his parents cannot make the funeral due to health logistics. They were just happy he was enjoying his life but wished he'd lived longer on less hypos.
Any dn worth her/his salt will be wanting to keep hypos out of your management.
Many don't get any.

So sorry to hear about your friend, that’s just so sad.

Just to clarify, this wasn’t the DN making the call, just the practice nurse at my GP surgery calling me. My diabetes care is taken care of at the diabetes clinic at my regional hospital, I’m under consultant care there - it’s just that I have to get my bloods taken at the surgery. My consultant and hospital dietician are both aware that I’m keto, and they are quite happy with that - and that I know safe levels of ketones etc. They’ve made sure I’ve got plenty of blood ketone sticks so I can monitor my levels closely. So no, the practice nurse doesn’t know, and there wasn’t chance to tell her before she finished the call.

I don’t really get hypos any more since getting the Libre and going keto - I’ve not dropped below 3.5mmol for over two months (I had a few in the very early days while I was getting my basal insulin doses correct), and I’ve not had a night hypo since early January, again this was in about the first week after dropping carbs. And if I do drop a little below range, I’ll have just one or two dextrose tabs to bring it back into line, no need to eat tons of them - so I’m non over treating and then having to correct. Falls are much slower than when I’m eating carbs, and much easier to deal with. My Libre trace is flat and even all through the night, I wake within about 0.5mmol from when I went to bed, unless I sleep through the dawn liver dump, and then it’s a little higher. I suspect they’re not yet used to seeing the massively improved management that Libre gives to type ones, and just assume that you’re only able to get such low results by swinging around all over the place and having a hypo every five minutes.

 

[NewTD2]

To prevent diabetic complications, the target HBA1C is 48 and below.

I don’t understand why some doctors are advising Type 1s to aim for minimum 50-53 ?

Is it to prevent hypos?

What about preventing diabetic complications ie amputations, blindness, kidney failure, stroke etc?

 

[jlarsson]

The problem with averages is that it can be deceiving, you can have roller coaster values but still have a great average, or you can have outstanding almost constant values with a few highs/lows that sway the average in the wrong direction. Yours look very good to me.

 

[EllieM]

Is it to prevent hypos?

What about preventing diabetic complications ie amputations, blindness, kidney failure, stroke etc?

Hypos can kill you now (plus others if you're driving at the time). Complications are more likely but by no means certain with higher hbA1Cs. So if you're not getting hypos it's fine to go for lower hbA1Cs but if you are it's less risk to run a bit higher. I can understand why people are told to run higher, it's just a shame that cgms aren't more freely available so that people can run lower safely.

I was ordered (at threat of driving license removal) to run higher by my diabetes specialist (last HbA1C was 6.9). I can see her point, as I had an ambulance inducing hypo when I was out on the street and I just don't get hypos like that when I run a bit higher. 48 years of T1, mostly running that little bit higher (hbA1C in 7s), and my only complication is on again off again mild background retinopathy that has been monitored for ages with no need for treatment. Plus my specialist told me that bad hypos cause brain damage. My brain is my most valued body part . She also promised me that with my history I wasn't going to go blind, have an amputation, renal failure etc etc, (which I mostly believe, as long as I keep that little bit higher not too much higher).

 

[NoKindOfSusie]

my only complication is on again off again mild background retinopathy that has been monitored for ages with no need for treatment

I don't want to be nasty but that is not a great advertisement for whatever your approach is.

 

[kev-w]

I don't want to be nasty but that is not a great advertisement for whatever your approach is.

On the other hand only having mild background retinopathy after 48 T1 years is an achievement, 8 years plus is the starting point for most T1s....

 

[ickihun]

To prevent diabetic complications, the target HBA1C is 48 and below.

I don’t understand why some doctors are advising Type 1s to aim for minimum 50-53 ?

Is it to prevent hypos?

What about preventing diabetic complications ie amputations, blindness, kidney failure, stroke etc?

Yes. Hypos can kill. More common now, even in type2s. I guess the more type2s the more deaths.... worldwide.
Its sad to think some people walking around not even diagnosed will die of it early. Very scary.
I feel lucky to be aware and able to do what I do.
Thankful many scientists are working hard to prevent deaths.

 

[ickihun]

On the other hand only having mild background retinopathy after 48 T1 years is an achievement, 8 years plus is the starting point for most T1s....

I agree @kev-w. Many fairly new to diabetes unestimate how much hard work we long term diagnosed diabetics have put in. And continue to.
It definitely is a marathon not a sprint!

 

[NewTD2]

Yes. Hypos can kill. More common now, even in type2s. I guess the more type2s the more deaths.... worldwide.
Its sad to think some people walking around not even diagnosed will die of it early. Very scary.
I feel lucky to be aware and able to do what I do.
Thankful many scientists are working hard to prevent deaths.

Type 2s do not suffer from hypos unless they are insulin dependent T2s.

Weakness due to low carb diet, yes. But not usually hypos experienced by T1s.

 

[ickihun]

Hypos can kill you now (plus others if you're driving at the time). Complications are more likely but by no means certain with higher hbA1Cs. So if you're not getting hypos it's fine to go for lower hbA1Cs but if you are it's less risk to run a bit higher. I can understand why people are told to run higher, it's just a shame that cgms aren't more freely available so that people can run lower safely.

I was ordered (at threat of driving license removal) to run higher by my diabetes specialist (last HbA1C was 6.9). I can see her point, as I had an ambulance inducing hypo when I was out on the street and I just don't get hypos like that when I run a bit higher. 48 years of T1, mostly running that little bit higher (hbA1C in 7s), and my only complication is on again off again mild background retinopathy that has been monitored for ages with no need for treatment. Plus my specialist told me that bad hypos cause brain damage. My brain is my most valued body part . She also promised me that with my history I wasn't going to go blind, have an amputation, renal failure etc etc, (which I mostly believe, as long as I keep that little bit higher not too much higher).

Totally agree @EllieM Well done.
I know a few type1s in my life who haven't been so vigilant. One due to bad advice and a very very long teenage rebelling. She has had a transplant but still having kidney dialysis due to kidneys rejected. She has been left with very very little sight but no worse since transplant. She can see her son grow up. Partially.
She wasn't aware of carb damage.

 

[ickihun]

Type 2s do not suffer from hypos unless they are insulin dependent T2s.

Weakness due to low carb diet, yes. But not usually hypos experienced by T1s.

Thats right. Well any medication which lowers the bg. Sulphonylureas are a drug which also lowers bgs. Some are saying metformin has caused hypos for them too. Not all metformin takers thou.
Alcohol mixed with insulin is a big risk increaser.
Some are using alcohol to lower their fbg results (hence hba1c result too).
Modern living includes alcohol, for many.

Risks are still evident in type2s even those not on insulin. Just less risk but still a risk.

 

[Brunneria]

Type 2s do not suffer from hypos unless they are insulin dependent T2s.

Weakness due to low carb diet, yes. But not usually hypos experienced by T1s.

This is factually incorrect.

There are other drugs than insulin which cause hypos, and some of them are drugs routinely prescribed to T2s.

In addition, there are medical conditions which can cause hypos, whether that person has diabetes or not. These conditions include, but are not restricted to, insulinoma, reactive hypoglycaemia, and as complications of bariatric surgery.
https://academic.oup.com/jcem/article/98/10/39A/2833336

I realise that these conditions are comparatively rare, but they are common enough that stating 'only insulin dependents get hypos' is misleading and potentially dangerous.

 

[NoKindOfSusie]

8 years plus is the starting point for most T1s....

Sorry what?

What is going to happen to me in 8 years? Well seven and a quarter?

 

[Engineer88]

Sorry what?

What is going to happen to me in 8 years? Well seven and a quarter?

There's never any guarantee.

 

[LooperCat]

On the other hand only having mild background retinopathy after 48 T1 years is an achievement, 8 years plus is the starting point for most T1s....

I’ve been at it for twenty years now (next week, perhaps I’ll have a keto tea and cake party to celebrate not being dead), I had a bit of numbness in my toes which has mostly gone since getting Libre and dropping carbs (ie getting my HbA1c down), the three small bleeds I had in my eyes have healed, my frozen shoulder has almost sorted itself out, and the crippling trigeminal neuralgia has virtually gone - I was on the verge of having some very nasty surgery on my jaw which could have left me permanently with a numb cheek and tongue and impaired sense of taste. I had no idea that could be a diabetes neuropathy, and my maxillofacial consultant is so gobsmacked by this that he wants to write it up in a journal. Very little research has been done on this condition with relation to diabetes, I think one type two chap in India was the subject of a paper on it.

All these improvements to my health have happened since I dropped the HbA1c from 89-94 down to 50, and now 43.

I don’t think that the GP surgery level HCPs have quite realised the significance of CGM yet - and just how tightly and evenly you can control T1 if you combine it with a lower carb diet (or get really clever with pre-bolusing for carbs). Microdosing and microcarbing (thanks to the “Sugar Surfing” book) can nudge sugars into line before they go out of range - I know that a dextrose tablet will raise me by ~0.6mmol and that a unit of Novorapid will drop me by 3 (2 in the morning). I’ve got my basal spot on - went to bed at 6 and woke up at 6.1mmol - the trace shows no sign of a hypo. I think once I show her the data I collect that she’ll get off my back.

My consultant is absolutely thrilled with the improvements I’ve made, especially as I’d been in total burnout for many years. I’m hoping I’ve got away with it - all the test on my liver, kidneys, heart etc show that they are in perfect condition, and the noticeable neuropathies like my toes and eyes (and the trigeminal neuralgia - who knew?) have almost resolved themselves.

I know I bang on about it a lot, but Libre is an absolute game changer, and I feel it really has saved my life.

 

[ickihun]

I’ve been at it for twenty years now (next week, perhaps I’ll have a keto tea and cake party to celebrate), I had a bit of numbness in my toes which has mostly gone since getting Libre and dropping carbs (ie getting my HbA1c down), the three small bleeds I had in my eyes have healed, my frozen shoulder has almost sorted itself out, and the crippling trigeminal neuralgia has virtually gone - I was on the verge of having some very nasty surgery on my jaw which could have left me permanently with a numb cheek and tongue and impaired sense of taste. I had no idea that could be a diabetes neuropathy, and my maxillofacial consultant is so gobsmacked by this that he wants to write it up in a journal. Very little research has been done on this condition with relation to diabetes, I think one type two chap in India was the subject of a paper on it.

All these improvements to my health have happened since I dropped the HbA1c from 89-94 down to 50, and now 43.

I don’t think that the GP surgery level HCPs have quite realised the significance of CGM yet - and just how tightly and evenly you can control T1 if you combine it with a lower carb diet (or get really clever with pre-bolusing for carbs). Microdosing and microcarbing (thanks to the “Sugar Surfing” book) can nudge sugars into line before they go out of range - I know that a dextrose tablet will raise me by ~0.6mmol and that a unit of Novorapid will drop me by 3 (2 in the morning). I’ve got my basal spot on - went to bed at 6 and woke up at 6.1mmol - the trace shows no sign of a hypo. I think once I show her the data I collect that she’ll get off my back.

My consultant is absolutely thrilled with the improvements I’ve made, especially as I’d been in total burnout for many years. I’m hoping I’ve got away with it - all the test on my liver, kidneys, heart etc show that they are in perfect condition, and the noticeable neuropathies like my toes and eyes (and the trigeminal neuralgia - who knew?) have almost resolved themselves.

I know I bang on about it a lot, but Libre is an absolute game changer, and I feel it really has saved my life.

I bet a few type2s would like the libre too.
How often do you still use regular testing strips now then?

 

[ickihun]

@Mel dCP I remember when I was in burn out a few years ago and I got scatica then this inflammation in my jaw, it was horrendous. I couldn't open my mouth wide. I blamed it on needing to book a dentist. It went once house move stress settled down. Occasionally I get lock jaw for a few seconds. Is this the same as you experience?