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Cystic fibrosis related question

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Revdeal

New Member
Relationship to Diabetes
Cystic Fibrosis Diabetes
Hi all I hope everyone is keeping well. I have last week been told by my CF team after having a CGM for 14 days that now require insulin injection with meals (tablets not an option). I used the Libre freestyle 2 my results after the 14 days were 92% within the target range of 3.9 to 10 and 8% where above 10. My CF team have said because I have CF the target range is actually 4.2 to 7.8 which lowers my averages My last HBA1C was 57 which is currently managed by diet and exercise. Has anyone else had similar circumstances and is anyone able to clarify what is the standard range? Many thanks for your assistance in the matter.
 
Target ranges are an individual thing. The target range given to you by your team of 4.2-7.8, after they've taken into consideration your other medical conditions, will be more relevant to you than whatever the target ranges are all of the forum users who aren't you and don't have your medical conditions.
 
There are a couple of people who may be able to help you @Sugarcoated who has experience of CF but otherwise your support team should be able to explain why you seem to have been given quite a tight target range.
There seems to be a new CF medication which has been reported as being like changing for people with the condition.
 
Hi all I hope everyone is keeping well. I have last week been told by my CF team after having a CGM for 14 days that now require insulin injection with meals (tablets not an option). I used the Libre freestyle 2 my results after the 14 days were 92% within the target range of 3.9 to 10 and 8% where above 10. My CF team have said because I have CF the target range is actually 4.2 to 7.8 which lowers my averages My last HBA1C was 57 which is currently managed by diet and exercise. Has anyone else had similar circumstances and is anyone able to clarify what is the standard range? Many thanks for your assistance in the matter.

Welcome @Revdeal 🙂 The Libre just contains an average target range. It’s not aimed at individuals, whose targets might differ. As an example, pregnant women with diabetes have stricter targets, so even if they got 100% in target on the Libre, they could still be out of their specific pregnancy target range. Insulin might sound scary but it can be a great tool too, so don’t fear it.

CF is similar to pregnancy and a few other conditions - stricter targets. I’m not sure of the reason for this but I found this online. You’ll see that higher blood sugars can affect the CF:

Why should my blood sugars be well-controlled?
Keeping your blood sugar levels within an acceptable range (remembering that the normal range is between 4-7mmol/L) is very important because:
Allowing your blood sugars to run too high may mean that it takes longer to get over an infection.
Poor diabetic control can lead to weight loss.
High blood sugars may cause your sputum to be more viscous (thicker)
than usual.

Keeping your blood sugars within the normal range (4-7 mmol/L) helps to prevent the symptoms of diabetes.
You may not have symptoms when your blood sugar levels are high so monitoring is essential.
Having poor diabetic control over a period of time can lead to complications, which may affect your eyes, kidneys, feet and circulatory system.
 
Hi all thank you for all of your posts so far. My CF side of things is excellent lung function best it’s been no weight loss etc no symptoms of CFRD apartment from some spikes. I am going for another HBA1C test at the beginning of June and gave my CF team the example of should my HBA1C come back below 48 (pre diabetic range) would this change their treatment plan to which they say no. Many thanks
 
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Hi all I hope everyone is keeping well. I have last week been told by my CF team after having a CGM for 14 days that now require insulin injection with meals (tablets not an option). I used the Libre freestyle 2 my results after the 14 days were 92% within the target range of 3.9 to 10 and 8% where above 10. My CF team have said because I have CF the target range is actually 4.2 to 7.8 which lowers my averages My last HBA1C was 57 which is currently managed by diet and exercise. Has anyone else had similar circumstances and is anyone able to clarify what is the standard range? Many thanks for your assistance in the matter.
Hi there and welcome to the online support forum! Thank you for sharing that you have Cystic Fibrosis. You can find information about Cystic Fibrosis Related Diabetes (CFRD) from the Cystic Fibrosis Trust by clicking here https://bit.ly/3sHKgpo. In terms of range, it might be appropriate to get back in touch with your Diabetes team to clarify that. You are also very welcome to speak to our helpline about this on 0345 123 2399 or helpline@diabetes.org.uk 9am-6pm Mon-Fri.
 
Hi all thank you for all of your posts so far. My CF side of things is excellent lung function best it’s been no weight loss etc no symptoms of CFRD apartment from some spikes. I am going for another HBA1C test at the beginning of June and gave my CF team the example of should my HBA1C come back below 48 (pre diabetic range) would this change their treatment plan to which they say no. Many thanks
An a1c in the pre-diabetic range means blood sugars are higher than the normal range, so above your target range. Perhaps if your a1c was below the prediabetic range and in the normal range, they’d be happy to delay the insulin?
 
Yeah but surely that pre diabetic state wouldn’t warrant tablets or insulin?
For a pre diabetic without CF, no, but the target range with CF that you’ve been given (4.2-7.8) is a non-diabetic blood sugar range, not a prediabetic range.
 
I would query what that range they have set you is? ie. Is it a pre meal reading range as for finger pricks or is it a range for Libre and if the latter what amount of time are they hoping you will maintain within that range? With the best will in the world, most of us struggle to keep our levels within 3.9-10 80-90% of the time. I am not sure I could achieve 70% TIR with a target of 4.2 - 7.8 Insulin is likely to cause hypos in someone who is trying to hit such a narrow range consistently in my opinion, especially if that person is already achieving almost normal readings without insulin. I wonder how much the CF clinicians understand about managing diabetes with insulin.
 
My time in target on
I would query what that range they have set you is? ie. Is it a pre meal reading range as for finger pricks or is it a range for Libre and if the latter what amount of time are they hoping you will maintain within that range? With the best will in the world, most of us struggle to keep our levels within 3.9-10 80-90% of the time. I am not sure I could achieve 70% TIR with a target of 4.2 - 7.8 Insulin is likely to cause hypos in someone who is trying to hit such a narrow range consistently in my opinion, especially if that person is already achieving almost normal readings without insulin. I wonder how much the CF clinicians understand about managing diabetes with insulin.
Hi many thanks for your post my TIR on the Libre sensor was pre set to 3.9 to 10 of which based on that range my overall TIR for the 14 days was 3.9 to 10 92% and over 10 8%. My CF have said the due to my CF my range is 4.2 to 7.8 of which I was TIR then 4.2 to 7.8 70% and 7.9 to 10 22%. My Libre sensor said that out of the 14 days that my average blood sugar each day was below 7.8 apart from 2 days which the average was 8.6 and 8.1 and my A1C estimate was 6.3% or 45 mmol on the actually app but on the Libre view PDF report 6.5% or 48 mmol.
 
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It’s similar to the pregnancy targets @rebrascora It is do-able, albeit hard work. At least the Libre helps watch for rises and drops. It’s hard work.

@Revdeal It might be easier to put the pre-diabetic/diabetic thing out of your head and think more of it being a personal blood sugar range for you because of the CF. That is, your situation is different, just as a pregnant women’s is different, and looking at random things like the Libre range or how people without CF are classified diabetes-wise is not as relevant to you as your own specific targets. You could ask your CF team for more detail about the targets eg are they focussing on the HbA1C, or minimising time above 7.8, or what.
 
Why does it actually need to be that tight with CF?

(I know the reasons when it's pregnancy)
 
Hi Jenny I don’t know yet when I ask that question they just say that this is an acceptable range and anything above this range is when the damage can be caused and complications may present themselves.
 
Why does it actually need to be that tight with CF?

(I know the reasons when it's pregnancy)

From my earlier post:

Why should my blood sugars be well-controlled?
Keeping your blood sugar levels within an acceptable range (remembering that the normal range is between 4-7mmol/L) is very important because:
Allowing your blood sugars to run too high may mean that it takes longer to get over an infection.
Poor diabetic control can lead to weight loss.
High blood sugars may cause your sputum to be more viscous (thicker)
than usual.
 
Hi Jenny I don’t know yet when I ask that question they just say that this is an acceptable range and anything above this range is when the damage can be caused and complications may present themselves.

The booklet about CF induced diabetes that I pasted from above explained why.
 
Well the Cystic Fibrosis Trust info on CF diabetes which @Dominic DUK doesn't say that - in fact it tells you if your BG is under 7 at night to have a carbohydrate snack before bed to ward off night time hypos.

I'm sure @Revdeal will be best guided by his own team anyway rather than people who haven't got both health issues themselves.
 
Dominic linked to exactly the same leaflet I quoted from! It’s on page 9 - an explanation of the need for tight control…
 
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Yes, tight control - but although it says aim for non diabetic normal numbers, it does not say you're likely to cause very great permanent harm to yourself if you don't hit them every single time, neither does it mention any actual numbers.

What I am wondering @Inka - and anyone else - is whether the good old fashioned T1 advice, whilst obviously avoiding post meal spikes into the teens and twenties as far as poss, to get the BG down to 4 to 5 before the next meal, is actually tight enough in this scenario. It's all very well saying oh it's just the same as pregnancy - but the time anyone spends pregnant is very limited in a whole life span. This IS for a whole life span.
 
Yes, it would be hard work. No-one can achieve perfect control 24/7 but the OP has been given a target range of 4.2-7.8, and insulin would help with any meal spikes, which are a large part of the issue when trying to achieve tight control. Insulin would also give more flexibility regarding diet and allow for corrections to deal with any spikes or higher sugars due to illness, which the booklet refers to, mentioning correcting at two hours post-prandial.

It would be for the OP to ask the details eg how much leeway there is, if brief spikes are ok, etc, etc. As with most things, it’s a balance between control/staying well and leading your life.

I took the OP as mainly querying their personal target range being different compared to the Libre TIR one. The target range that’s important is the personal one.
 
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