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

[Juicyj]

Background retinopathy can be reversed by the way - I reversed mine which appeared 2 years after diagnosis, I stabilised my BG levels and the next test came back as normal and has been so since, so nothing much to worry about there.

 

[LooperCat]

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

I only use them when I drive now. I’ve done a few comparison tests - a blood followed by a scan at 5, 10, 15 &20 minutes intervals, and when it’s in the range of 4-8mmol it’s spot on for me. So I rely on it quite happily to bolus and correct, but as I’m very low carb my doses and corrections are tiny, so the risk of overcompensating is very small. Half units, quite often.

@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?

No, trigeminal neuralgia is very different. When you bite, or chew, or in my case (because it’s more complicated than most, of course it flippin’ is!) even salivate, you get an electric shock in the jaw like you’ve had a shock from the 240v mains. The pain is regarded as a 10/10 on the standard NHS pain scale, up there with gallstones (and I had those just after my son was born, so completely agree). It’s had me on the floor screaming in agony - and the treatment for it are harsh, and often don’t work. It’s known as ‘suicide disease” because it’s so awful to live with. It’s a short circuit in the big trigeminal nerve that runs along the jaw, in my case the problem is in the branch that controls the salivary gland. The pain is very short, just a second or two, but is so intense that it’s life altering. Anything that made my mouth water would trigger it - my worst nightmare was having a hypo and being forced to eat glucose tablets, as they always triggered the pain.

I just get the odd mild twinge now, which I can live with completely unmedicated. And I’ve not had one of those for days now, they’re getting less and less.

 

[NoKindOfSusie]

There's never any guarantee.

Oh great. That's OK then.

 

[ickihun]

I only use them when I drive now. I’ve done a few comparison tests - a blood followed by a scan at 5, 10, 15 &20 minutes intervals, and when it’s in the range of 4-8mmol it’s spot on for me. So I rely on it quite happily to bolus and correct, but as I’m very low carb my doses and corrections are tiny, so the risk of overcompensating is very small. Half units, quite often.

No, trigeminal neuralgia is very different. When you bite, or chew, or in my case (because it’s more complicated than most, of course it flippin’ is!) even salivate, you get an electric shock in the jaw like you’ve had a shock from the 240v mains. The pain is regarded as a 10/10 on the standard NHS pain scale, up there with gallstones (and I had those just after my son was born, so completely agree). It’s had me on the floor screaming in agony - and the treatment for it are harsh, and often don’t work. It’s known as ‘suicide disease” because it’s so awful to live with. It’s a short circuit in the big trigeminal nerve that runs along the jaw, in my case the problem is in the branch that controls the salivary gland. The pain is very short, just a second or two, but is so intense that it’s life altering. Anything that made my mouth water would trigger it - my worst nightmare was having a hypo and being forced to eat glucose tablets, as they always triggered the pain.

I just get the odd mild twinge now, which I can live with completely unmedicated. And I’ve not had one of those for days now, they’re getting less and less.

Wow. Its fascinating but I bet down right uncomfortable and occasionally worrying. Sounds like specialist in on the ball for you thou.
Yes, very unusual complication, I'd thought?

 

[Jaylee]

Sorry what?

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

You'll be surprised how fast 87 months go with no "boxes" ticked along the way....

 

[ickihun]

Oh great. That's OK then.

We are expected to do our best to avoid any complication. You have educated yourself here so now your forearmed. More than most people I know in real life.
You do your best..... it's more than good enough!
Those who ignore their needs are the ones who cannot moan. Right?

 

[Jaylee]

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.

"50%."
Do you have any links to this statistic?

You could mean 'lipos' (lipohypertrophy).? They can occur with folk who inject insulin, not rotating the sites on a regular basis. The fatty deposits build up on a site habitually used, & inhibits the "localized" absorption of insulin from the jab.
But technically not the same as T2.

 

[LooperCat]

Wow. Its fascinating but I bet down right uncomfortable and occasionally worrying. Sounds like specialist in on the ball for you thou.
Yes, very unusual complication, I'd thought?

It’s the worst pain I’ve ever been in, and I’ve had gallstones Its never been thought of as a neuropathic complication of T1, but it’s a remarkable coincidence how mine has gone along with my other neuropathies in the last few months. At its height I was on the verge of taking an overdose. My specialist is so intrigued by my recovery that he’s going to be working with the diabetes team to see if lowering HbA1c scores for his other diabetic patients can help. The surgery I escaped is complicated, expensive, often doesn’t work and runs a huge risk of damaging feeling to the cheek and tongue, as well as the sense of taste. He’s certainly going to see if there is a correlation between high BG and the pain levels in diabetics.

 

[Edge]

That is a really good result. Since I went on Libre, my control has been similar, where 6mmol has become normal and hypos are mostly a thing of the past.

Trouble is the cost of Libre is killing me, and this weekend my last sensor ends and I have just had to go back to pure blood tests. I said to the consultant last week, look the NHS pays £35 and I am saving NHS money on test strips so why cannot you at least sell them to be at £25 until you eventually decide if I can have Libre on NHS. The cost of treating complications has to be high, so I really don't understand why it has to take so long for approval and why there cannot be a cost-neutral option in the meantime.

Most of us know what we need to do to look after ourselves. Cannot believe your nurse thinks you might be lying - why, what would be the point! Anyway, super well done.

 

[Bill_St]

You are on Libre. Use the data. Libre software has a great set of reports. On the Create Reports page, you can set the preferences for the Glucose Pattern insights. Edit median goal to 7mmol/L; edit Low glucose allowance to Large and save them.
Select the Glucose Pattern insights report - that or Page 4 of the full report is the one you need.
This single page gives an excellent summary of your history. In particular it provides a simple traffic lights system that even your nurse can understand.
It shows the likelihood of Low Glucose and the times you have approached the low threshold you have set (I use 3.9)

Your nurse will be a lot happier if you provide her with some documentary evidence that you are not at risk.
Take copies into your surgery and clinic and ask for them to be placed on your file.

 

[shirleyannco]

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

This is unbelievable she should be praising you not moaning well done you

 

[tom58]

Well done Mel. Well controlled insulin dependent diabetics can suffer criticism for keeping their long term blood sugar low. This can even happen on this forum where you may be told that you must have become hypo unaware! From your various posts it seems to me that you have a much better understanding of your own condition than many so-called medical professionals. Ignore them and only pay attention to your diabetic consultant.

 

[ringi]

"50%."
Do you have any links to this statistic?

The numbers I have seen are from the USA and based on the level of inslin resistance that would give someone type2 if they did not have type1. Sorry I don't have a link to hand.

No one can drink as much full suger soda as is common without getting lots of health problems....

 

[Vonnelene]

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

Well done! Don’t be put off by this nurse. She clearly does not have a clue what she’s talking about!

 

[Scott-C]

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.

My thoughts exactly. Their view is based on an a1c, which is a blunt tool, a simple number.

We've now got much more useful information, like AGP graphs, which show how the a1c is constructed.

This is all as new to them as it is to us, so I think that, seeing as we basically do know more about it than them, seeing as we continously wear these things for months on end, as opposed to hcps, who've, well, just read about them, there's scope for being patient with them, and saying, look, I know you're just looking at the a1c number, but let me show you how to interpret it through this here AGP, and then we'll drill down a bit into dailies if there's some areas of concern.

If they don't go for that, you've then got free rein to f***ing handbag them...

 

[Jaylee]

The numbers I have seen are from the USA and based on the level of inslin resistance that would give someone type2 if they did not have type1. Sorry I don't have a link to hand.

No one can drink as much full suger soda as is common without getting lots of health problems....

Sorry, was the demographic IDT2s?? Or weight gained T1..? Fascinating. Please find the link.

Was the correlation with the soda due to wrong insulin dosage ratios causing BS swings..???

Throw me a bone here.. Go on? I won't need to bolus for it.

 

[Gates]

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

 

[RAPS_od]

I would mention to the nurse that you find it very difficult to trust her. Any "professional" that gives such obviously incorrect (and inconsiderate) diabetes advice needs to find a new vocation.

 

[nickm]

It is not only nurses who give this sort of advice. My GP used to tell me the same thing. 20 years on and he died young and I’m retired and tripping around the world skiing.
Actually there is some research to support higher HbA1cs in some situations, even in the absence of hypos. But the diabetes community is not interested in inconvenient details.

 

[bamba]

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?

I think it explicity states that the higher target is for those on hypo inducing medication eg Glicazide.