Flipping cheek UPDATE oops when I originally wrote my post I said that my Hba1c is 65 - I missed out the decimal point...it’s actually 6.5

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AJLang

AJLang

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Type 1
UPDATE oops when I originally wrote my post I said that my Hba1c is 65 - I missed out the decimal point...it’s actually 6.5
I just had a review with my surgery DSN which I have to have every year. She is lovely but she has written on my record “poor control” because I have some mild hypos and go up to 12 most nights (because of the gastroparesis) and same reason (Gastroparesis) several micro boluses a day.
BUT my HBA1C is 65 and more than 70% of my range is between 4 and 10 and less than 5% below 4. Less than 25% are above 10. so I meet all of the targets and my diabetic consultant said last month how brilliantly I’m doing.
I can’t be bothered to contact the DSN about what she wrote But it was a bit demotivating.
 
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Don’t be disheartened Amanda, your surgery DSN deals most of the time with T2 patients, where her comments might be more valid. You are doing well in your circumstances, so just accept it as ignorance of the trials of gastroparesis and T1, and carry on.

Just keep going, nobody is perfect, and the DSN should realise that. You do🙂
 
You’ve done a really great job of managing things so I wouldn’t take it to heart.

As you mentioned, the mild hypos are explainable in context and as long as you’re seeing steady improvements then you’re on the right track.
 
I think you’re doing absolutely brilliantly @AJLang I didn’t fully understand gastroparesis until I read your posts. It sounds very hard.

I would ignore the nurse, however lovely she is, and focus on your consultant’s opinion as that’s far more accurate.
 
I'd say that most practice nurses "who see the diabetics" don't have a clue about gastroparesis, if they've ever heard of it (or know much about T1 for that matter). Don't take it to heart. It sounds like you are doing fabulously well.
 
Sounds like ignorance on the part of the DSN. Looks like you ard managing really well.

Never give up. Never surrender. !
 
Thank you very much everyone. She is lovely but did say that I’m a complex case which must make it difficult for her.
 
UPDATE oops when I originally wrote my post I said that my Hba1c is 65 - I missed out the decimal point...it’s actually 6.5
 
AJLang said:
UPDATE oops when I originally wrote my post I said that my Hba1c is 65 - I missed out the decimal point...it’s actually 6.5
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An HbA1c of 6.5% equates to about 48mmols/mol (according to the conversion table I found) which is absolutely brilliant for a Type 1 without gastroparesis let alone with, so she clearly has no idea.
Many congratulations on an ab fab result!!

A registrar that I once saw at clinic wrote down on my records that my Levemir doses were 14 on a morning and 78 on an evening when in reality I said 7 to 8 units on an evening. Surely she should have queried such a massive evening dose! I didn't find out about it until months later when I say the practice nurse and she went to confirm it with me. I wondered what would have happened if I had had an accident and been carted off to hospital unconscious and some ward doctor had read my notes and authorized that dose 😱😳.
 
You know how well you are doing, so well done to you.
 
AJLang said:
UPDATE oops when I originally wrote my post I said that my Hba1c is 65 - I missed out the decimal point...it’s actually 6.5
I just had a review with my surgery DSN which I have to have every year. She is lovely but she has written on my record “poor control” because I have some mild hypos and go up to 12 most nights (because of the gastroparesis) and same reason (Gastroparesis) several micro boluses a day.
BUT my HBA1C is 65 and more than 70% of my range is between 4 and 10 and less than 5% below 4. Less than 25% are above 10. so I meet all of the targets and my diabetic consultant said last month how brilliantly I’m doing.
I can’t be bothered to contact the DSN about what she wrote But it was a bit demotivating.
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Perhaps it was a clumsy way of saying you could use your sensor and pump in a more proactive way and knock out the highs. I would suspect it's more concern for your sight than anything else, hence she wants the 12's not to be there.
If you have your sensor to alarm at 5 and then have a JB or two to keep it steady then that will solve the low problems.
Same with highs set the alarm for 10 so you can treat the impending high before it gets there.
 
Thank you everyone.
@Pumper_Sue great suggestions and basically what I’m doing except I set them at 4.3 because my Libre tends to read 1.0 higher, and 9. Unfortunately at night it doesn’t matter where I put my Libre on my arm I get compressions lows so it can say 4.3 when it’s actually 6.5.
The higher numbers are more difficult because I have a multiwave over 6 hours for the evening and irrespective of what I eat I may get straight line, or it shooting up at any point during the night or it can go down so corrections are difficult. If I get it wrong then any corrections, however small, have the potential to make me have hypos that can take 1-2 hours to correct even with bolus suspensions and sugary coke. For example Two nights it could go up to 12 at any point but then the third night crash down and need 45 carbs to get to normal levels. There is no way of predicting how quickly or slowly my food is digesting - it can vary from 2-12 hours and there is no way of knowing advance what it will do. That’s the essence of gastroparesis causing erratic blood sugars. During the day isn’t so bad because I don’t eat much at all. My diabetic consultant, who has had an article on diabetic gastroparesis published in the British Medical Journal thinks I’m doing brilliantly.
 
These photos show the differences in two consecutive days where I’ve eaten broadly similar food. The range I’ve set on here is 4-9.
 

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AJLang said:
@Pumper_Sue great suggestions and basically what I’m doing except I set them at 4.3 because my Libre tends to read 1.0 higher, and 9. Unfortunately at night it doesn’t matter where I put my Libre on my arm I get compressions lows so it can say 4.3 when it’s actually 6.5.
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Simple solution is to have your sensor where there is no compression, I found it causes no problem having the sensor level with the bend at my elbow and a hands width above the bend. Problem solved.
I know you are not going to like the suggestion but if it were me I would be writing down all the alcohol you drink and see what difference your control makes to the amount you drink. I suspect from reading your posts in the past you drink a lot more than you realise. I'm no medic but suspect things would improve no end for you if you took some basic steps by writing down all you drink and eat and being very honest with yourself. Look at pasta, rice meal etc and perhaps avoid those as they take so long to digest. Extended and combi boluses are a god send so make good use of them.
Def change your alarm to 5 rather than 4.3, it does make a massive difference.

For at least 3 years I never knew what my bloods were going to do as had no idea if I was absorbing food or not I had an undiagnosed cyst on my pancreas so control was trying to say the least. Pump and sensors were and are made good use of. So it can be done yes it's hard work and very frustrating. Having the right treatment and diet has made a massive difference.
 
Thank you @Pumper_Sue I appreciate what you're saying. I'm glad that you managed to get everything under control with your condition. I do know what I eat and I carefully track it. With regard to alcohol I do know how much I drink and, for example, on those two days I showed in the photo I hadn't had any alcohol at all and I had eaten exactly the same food for the two consecutive days. With my condition I have to focus on low fat and low fibre which is what I do. Ironically, one of my more regular meals is mainly rice based and with that I tend to have my smoothest nights. I've just realised that I haven't eaten that for a while. I know that it doesn't make sense but that is how it works for me. I agree with you about extended and combi (multiwave) and I do make the most of them as well as temporary basal rates. I genuinely do appreciate what you're saying but please also appreciate that I am doing most of what you've already suggested, including different positions of the sensor, and I am always looking at ways to improve things. Coincidentally my sensor is where you've suggested and they have been there for a few months but I still get compression lows.
Ironically the night time peaks I've been having are because on some meals my food is digesting much more quickly than it has for the past ten years or hasn't sufficiently digested the food that I've eaten earlier in the day. That's why it's shooting up, but in the past if I'd done the amount of upfront insulin to cover that I would have had bad hypos. The problem is that I don't know which nights it will shoot up and when it will go down/up and if it goes down when there is food in my stomach it is a very scary experience trying to get even something liquid to digest when my stomach isn't processing the food.
I have worked very hard to defeat the odds with the gastroparesis through an amazing amount of trying different things. Seven years ago one of the main diabetic gastroparesis consultants in the country said that I would soon be on pureed food due to how gastroparesis progresses but I've made sure that it hasn't reached that stage. I am very proud of myself that my average HBA1C is around 6.5 because I know that I have worked extremely hard to achieve that and that my Time in Range is well within the recommended levels.
The point of my original post was that a nurse had said that my control is poor when the diabetic consultant thinks that I'm doing brilliantly and often comments on how amazed she is at my results. And part of that is because I listen to all advice that I've been given on forums etc and applied it as appropriate.
 
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AJLang said:
The point of my original post was that a nurse had said that my control is poor when the diabetic consultant thinks that I'm doing brilliantly and often comments on how amazed she is at my results.
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My point was that the nurse could see the numbers in black and white and was commenting on them. I always have good A1c's but as no one ever looked at the numbers and how it was achieved it a tad pointless. Many consultants just look at the A1c and say very good and well done.
You occasionally come across one who wants to see the black and white as to how you achieved said A1c.
So obviously you know which category you fit in and can work on things as you see fit.
 
Thanks @Pumper_Sue now I understand why you thought the nurse had better information. It was a telephone appointment. She hadn’t got any data at all, apart from the HBA1C, and didn’t even ask me for figures. It was just me mentioning the 12’s at the end of the call.
My consultant has the full data up-to-date from my Libre loaded onto her computer and focuses on that more than the HBA1C.
 
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