Looking to learn how to support friend with diabetes

[SpikeUK]

Hello,

I'm new.

I am here to learn more about diabetes and to find out how to better support a friend.

Spike

 

[Leadinglights]

Hello,

I'm new.

I am here to learn more about diabetes and to find out how to better support a friend.

Spike

To give the best support is to know what Type of diabetes they have and how they normally manage it. But also ask them what support they would like as many people are quite private about their condition.
Once you find out that information then the Learning Zone may be useful but also the sections on the main DUK site explaining the difference between the Types of diabetes.
You also have to remember people manage their condition in many different ways as no one size fits all.

 

[SpikeUK]

To give the best support is to know what Type of diabetes they have and how they normally manage it. But also ask them what support they would like as many people are quite private about their condition.
Once you find out that information then the Learning Zone may be useful but also the sections on the main DUK site explaining the difference between the Types of diabetes.
You also have to remember people manage their condition in many different ways as no one size fits all.

All good points, thank you.
My friend is open about her condition and I am already monitoring her Dexcom CGM on my 'phone. When we go out (I am a volunteer driver with a local charity) my pockets are loaded with spare needles and glucose drinks ;-)
Thanks again

 

[Docb]

Hi @SpikeUK. Good to see you are keeping an eye on your friend. Are they Type 1 or some other Type? The glucose drinks are fine, but I am a bit cautious about the needles. You really need to know what you are doing before you think about injecting things.

 

[SpikeUK]

Hi @SpikeUK. Good to see you are keeping an eye on your friend. Are they Type 1 or some other Type? The glucose drinks are fine, but I am a bit cautious about the needles. You really need to know what you are doing before you think about injecting things.

Thank you for the reply.
My friend has "brittle" diabetes. This is something I am trying to find out more about.
Absolutely right to be cautious about the untrained carrying needles, these are for her use - they are easy to find in my pocket when needed.

 

[Docb]

"Brittle" diabetes is an odd term which I heard on a TV programme recently where it was used to describe diabetes brought on by trauma, either by disease or surgery, to the pancreas. It what we would normally refer to as Type 3c diabetes. Has your friend been in hospital recently for pancreatic problems?

If that is right then she will be taking insulin and the best help you can be to your friend is to be aware if she begins to behave oddly. You can then encourage her to test her blood glucose level, or check her monitoring device if she has one, so that she can deal with things herself whilst she is able to so. Most likely her blood glucose will be low and she will be grateful for the fruit juice.

 

[Proud to be erratic]

Hello @SpikeUK, welcome to the forum.

Well done to you for taking an interest on behalf of your friend. I have an unusual form of Diabetes because I surrendered my pancreas todefeat Pancreatic Cancer. As a result I have what I consider to be 'brittle' diabetes and while my Consultant has never recorded that in any written correspondence, she also has never contradicted me in any meeting. So I think this 'brittleness' is probably subjective and not comprehensively defined.

One UK website (and I advise caveat any Google searches to be for UK, because diabetes as a topic is confusing and contradictory in it's own right, without being deflected by so called experts from elsewhere in the world) says

Brittle diabetes - London Diabetes Centre

Brittle diabetes is a term used to describe type 1 diabetes that is particularly difficult to control. If you have brittle diabetes you’re likely to experience frequent, dramatic swings in blood glucose levels and are at risk of dangerous periods of hypoglycaemia and hyperglycaemia.

londondiabetes.com

Brittle diabetes is a term used to describe type 1 diabetes that is particularly difficult to control. If you have brittle diabetes you’re likely to experience frequent, dramatic swings in blood glucose levels and are at risk of dangerous periods of hypoglycaemia and hyperglycaemia.

Brittle diabetes is not just frustrating, it can have serious implications for your current and future health.
I have selectively curtailed this cut and paste, stepping away from that site promoting how brilliant they might be! But significant for me is that the above definition specifically says for Type 1 - I am as if T1, but definitely not T1. Yet I seem to have brittle diabetes and certainly have to manage my D from that start point.

Diabetes UK (DUK) [Note this is the site that sponsors this forum and is the official point of reference for the NHS - diabetes.org.uk/...; with blue headings not the red topped site diabetes.co.uk, which is commercially sponsored from USA] have a useful intro to what is diabetes :

About diabetes

Diabetes (otherwise known by the scientific name diabetes mellitus) is a complicated condition and there are many different types of diabetes. Here we'll take you through everything you need to know. What is diabetes? Diabetes is a serious condition where your blood glucose level is too high. It...

www.diabetes.org.uk

If you scroll down a bit you arrive at their definitions of different types of D, all of which gives you some insight into the overlying complexity of Diabetes.

About diabetes

Diabetes (otherwise known by the scientific name diabetes mellitus) is a complicated condition and there are many different types of diabetes. Here we'll take you through everything you need to know. What is diabetes? Diabetes is a serious condition where your blood glucose level is too high. It...

www.diabetes.org.uk

Note DUK don't specifically refer to brittle D as a type of D in its own right.

So, I would suggest you be sure that you clarify if your friend's diabetes is formally categorised as brittle. This is solely just in case you end up involved in helping her gain emergency medical help; under that circumstance you can confidently say your friend is T1 with brittle D, or is T1 and with what seems to be brittle D.

Moving on, it is really good that your friend has a Dexcom CGM; does she also have a lancing device and associated BG test meter? The CGM is very helpful in providing alerts (or alarms) to tell the patient as soon as their BG is changing, particularly when BG is falling. What model of Dexcom specifically: Dex One, One+, G6 or G7. Each has their differences both in the details they display to the user and the potential alert settings. I am a strong believer in making full use of Dexcom's alerts: tell me when there is a problem coming, is way more preferable to sounding an alarm when it is too late to do anything about it. What setting does your friend have their Low alert set at?

There are limitations to the use of CGMs and it is important that your friend is aware of these limitations. It would be sensible if you also had some awareness of these. A link to a thread on this site is below.
https://forum.diabetes.org.uk/boards/threads/cgm-limitations-and-precautions.108188/

I think that is enough for the moment. While I've been writing this @Docb has snuck in, also highlighting that the term brittle can be ambiguous. If you can provide a little more detail about your friend's diabetes type and origins, including how long she has been managing her diagnosis - then we can provide comments that are more focussed and pertinent, with an understanding of how much your friend already knows and is happy about. Do keep asking questions, no question is stupid; we all started as newcomers to D.

 

[Inka]

Brittle diabetes is usually used to describe Type 1 with erratic blood sugars. It’s not a term used much now.

@SpikeUK Finding out if they do actually have Type 1 is your first step. They’ve obviously given you permission to monitor their Dexcom, so having glucose for them is ok. You wouldn’t need needles though unless the friend can’t carry their own for special reasons.

 

[helli]

@SpikeUK I think it is great that you want to understand more about your friend's condition and support them.
Like others, I am confused about why you are carrying needles - they are of no use unless you have something to inject which, in this case, would be insulin. As insulin has a limited lifespan, it is not something you can carry around in your pockets just in case it is needed.
Does your friend have a tendency to forget to carry needles with their insulin pens?
(I am assume the needles you have are the ones that screw onto the pens rather than syringes or ... something for sewing 🙄 ).
As you are also watching their BG through your Dexcom app, it is useful to understand the limitations of CGMs and when finger pricking is necessary.
CGM limitations and precautions

 

[everydayupsanddowns]

Good on you for being a supportive friend and wanting to know more.

You might find this Diabetes Etiquette Card a helpful reminder for ways to have positive conversations about your friend’s diabetes, and some things to be careful about.

https://behavioraldiabetes.org/xwp/wp-content/uploads/2015/12/BDIAdultEtiquetteCard.pdf

Welcome to the forum 🙂

 

[SpikeUK]

Hello @SpikeUK, welcome to the forum.

Well done to you for taking an interest on behalf of your friend. I have an unusual form of Diabetes because I surrendered my pancreas todefeat Pancreatic Cancer. As a result I have what I consider to be 'brittle' diabetes and while my Consultant has never recorded that in any written correspondence, she also has never contradicted me in any meeting. So I think this 'brittleness' is probably subjective and not comprehensively defined.

One UK website (and I advise caveat any Google searches to be for UK, because diabetes as a topic is confusing and contradictory in it's own right, without being deflected by so called experts from elsewhere in the world) says

Brittle diabetes - London Diabetes Centre

Brittle diabetes is a term used to describe type 1 diabetes that is particularly difficult to control. If you have brittle diabetes you’re likely to experience frequent, dramatic swings in blood glucose levels and are at risk of dangerous periods of hypoglycaemia and hyperglycaemia.

londondiabetes.com

Brittle diabetes is a term used to describe type 1 diabetes that is particularly difficult to control. If you have brittle diabetes you’re likely to experience frequent, dramatic swings in blood glucose levels and are at risk of dangerous periods of hypoglycaemia and hyperglycaemia.

Brittle diabetes is not just frustrating, it can have serious implications for your current and future health.
I have selectively curtailed this cut and paste, stepping away from that site promoting how brilliant they might be! But significant for me is that the above definition specifically says for Type 1 - I am as if T1, but definitely not T1. Yet I seem to have brittle diabetes and certainly have to manage my D from that start point.

Diabetes UK (DUK) [Note this is the site that sponsors this forum and is the official point of reference for the NHS - diabetes.org.uk/...; with blue headings not the red topped site diabetes.co.uk, which is commercially sponsored from USA] have a useful intro to what is diabetes :

About diabetes

Diabetes (otherwise known by the scientific name diabetes mellitus) is a complicated condition and there are many different types of diabetes. Here we'll take you through everything you need to know. What is diabetes? Diabetes is a serious condition where your blood glucose level is too high. It...

www.diabetes.org.uk

If you scroll down a bit you arrive at their definitions of different types of D, all of which gives you some insight into the overlying complexity of Diabetes.

About diabetes

Diabetes (otherwise known by the scientific name diabetes mellitus) is a complicated condition and there are many different types of diabetes. Here we'll take you through everything you need to know. What is diabetes? Diabetes is a serious condition where your blood glucose level is too high. It...

www.diabetes.org.uk

Note DUK don't specifically refer to brittle D as a type of D in its own right.

So, I would suggest you be sure that you clarify if your friend's diabetes is formally categorised as brittle. This is solely just in case you end up involved in helping her gain emergency medical help; under that circumstance you can confidently say your friend is T1 with brittle D, or is T1 and with what seems to be brittle D.

Moving on, it is really good that your friend has a Dexcom CGM; does she also have a lancing device and associated BG test meter? The CGM is very helpful in providing alerts (or alarms) to tell the patient as soon as their BG is changing, particularly when BG is falling. What model of Dexcom specifically: Dex One, One+, G6 or G7. Each has their differences both in the details they display to the user and the potential alert settings. I am a strong believer in making full use of Dexcom's alerts: tell me when there is a problem coming, is way more preferable to sounding an alarm when it is too late to do anything about it. What setting does your friend have their Low alert set at?

There are limitations to the use of CGMs and it is important that your friend is aware of these limitations. It would be sensible if you also had some awareness of these. A link to a thread on this site is below.
https://forum.diabetes.org.uk/boards/threads/cgm-limitations-and-precautions.108188/

I think that is enough for the moment. While I've been writing this @Docb has snuck in, also highlighting that the term brittle can be ambiguous. If you can provide a little more detail about your friend's diabetes type and origins, including how long she has been managing her diagnosis - then we can provide comments that are more focussed and pertinent, with an understanding of how much your friend already knows and is happy about. Do keep asking questions, no question is stupid; we all started as newcomers to D.

Many thanks for all of the above.
The "brittle" description is the one my friend uses - along with "(expletive deleted) uncontrolled". She uses Dexcom G7 system linked to her 'phone and I can see last 24h of readings on mine.
I have become aware of the shortcomings of the CGM systems although these have never been mentioned to my friend by health care professionals. The talking BG meter is used to verify CGM readings.
Not sure when my friend's low alert kicks in but mine is set to trigger at 3.1 mmol/L.
My friend has had diabetes since she was about 4 and is now in her 40s. She pretty much knows what her body is doing and I am learning to recognise the signs of hyper/hypo.
Thanks again for the welcome and information.

 

[SpikeUK]

Brittle diabetes is usually used to describe Type 1 with erratic blood sugars. It’s not a term used much now.

@SpikeUK Finding out if they do actually have Type 1 is your first step. They’ve obviously given you permission to monitor their Dexcom, so having glucose for them is ok. You wouldn’t need needles though unless the friend can’t carry their own for special reasons.

It is T1 and is pretty unpredictable.
I have the needles for when we are out - I can generally find them quicker in my pocket than she can in the bottom of her bag ;-)

 

[Leadinglights]

It is T1 and is pretty unpredictable.
I have the needles for when we are out - I can generally find them quicker in my pocket than she can in the bottom of her bag ;-)

Perhaps a good present for her would be a small pouch or bag in which she can keep ALL her diabetes stuff in one place readily to hand so she does not have to rummage in the bottom of a bag.

 

[SpikeUK]

@SpikeUK I think it is great that you want to understand more about your friend's condition and support them.
Like others, I am confused about why you are carrying needles - they are of no use unless you have something to inject which, in this case, would be insulin. As insulin has a limited lifespan, it is not something you can carry around in your pockets just in case it is needed.
Does your friend have a tendency to forget to carry needles with their insulin pens?
(I am assume the needles you have are the ones that screw onto the pens rather than syringes or ... something for sewing 🙄 ).
As you are also watching their BG through your Dexcom app, it is useful to understand the limitations of CGMs and when finger pricking is necessary.
CGM limitations and precautions

Thank you for the welcome.
Thank you also for the link to the "CGM limitations" thread.
I only have needles for when we are out - I can generally find them quicker in my pocket than she can in her bag ;-)
Agree about Insulin. My friend has one out of the fridge at a time. My jacket pocket would not be a good environment.

 

[SpikeUK]

Perhaps a good present for her would be a small pouch or bag in which she can keep ALL her diabetes stuff in one place readily to hand so she does not have to rummage in the bottom of a bag.

True. I would love to help organise but I do not wish to interfere with her autonomy.

 

[Inka]

It is T1 and is pretty unpredictable.
I have the needles for when we are out - I can generally find them quicker in my pocket than she can in the bottom of her bag ;-)

I keep needles in my pen case, which means no scrabbling around 🙂 You mention that you have an alert when she’s at 3.1. I have the Dexcom G7 too and that’s the pre-set level of the Urgent Low alarm. She should also have a Low Alert (not sure if you’d be able to see this on your phone) which alerts her prior to that. She’ll be able to set this at a level that’s helpful for her. As she has brittle diabetes, this level should be higher eg in the 5s. She can then check and assess, looking at the arrows.

Has she always had brittle diabetes or is it a more recent thing that it’s being unpredictable?

 

[Proud to be erratic]

Thanks for clarifying. I also have G7, read by both my android phone and a seperate hand held Receiver. They each display the same info, ie are not doing any interpreting of sensor data. What the sensor says is what it is detecting. I find the 2 devices helpful; I don't have any other computer, so when my phone is working hard eg on a secure site, such as my bank, I can just look at the Receiver without having to leave that secure site.

True. I would love to help organise but I do not wish to interfere with her autonomy.

It is so good that you want to improve your understanding of your friends D, particularly the brittleness factor. But also very astute in not wanting to interfere with her autonomy. This can be very dangerous territory.

The US author Gary Scheiner, in his book Think Like a Pancreas, tells his readers that "Diabetes is Complicated, Confusing and Contradictory". This is so true. Pretty well every day something bubbles up that ties back into that summary. One thing that leaps out to me is that we are all different and metabolic responses for people with D exemplify just that. What works for one person can be very different for the next person. It is also true for this phenomenon of brittleness.

No doubt there are clever medical explanations about brittleness, probably for both why it occurs for some, but not so much for others. My explanation to myself is that with having absolutely no pancreas I have none of the other hormones and enzymes that help provide the safety net that non-diabetic folk have; also that true T1s probably have some of those hormones that provide a degree of safety net.

I'm still very much learning, particularly about my brittleness. My default low alert is 6, but I vary it according to how closely I am monitoring. If I am busy and/or distracted by some activity 6 is helpful for me: high enough to make me check the trend as well as the actual reading when the alert occurs and providing enough lead time to intercept a potential crash. Even from that 6mmol/L start I can go sufficiently rapidly down to make the sensor say I'm in high 3s, but sometimes that is over anticipation and then held back by interstitial lag. In practice high 3s for me are infrequent, actual hypos (below 3.5) are very rare for me - because I am keenly aware that lows can be cumulatively damaging to cognitive Impairment and in my mid 70s that is a real worry for me. So I blatantly keep myself close to 6.

I have found in the last 12 months or so, that working on reducing Glycaemic Variability (GV) has given me noticeably less brittleness. Thanks to my G7 I get not just the graph to give me a picture of how variable my BG is but also some statistical data telling me how much Time in Range (TIR) [between 4 and 10] I spend per 3, 7, 14, 30 or 90 days. This gives me a measure of my GV and a target to strive for and (irritatingly) to see being blitzed when I too rapidly and not fully explainably get very high, or go lower than I want to be. Those "excursions" out of range can stress me and that stress becomes a factor in its own right to further elevate my BG! [ Did I mention that D is Complicated ... or Contradictory ...?].

So if my BG is rapidly changing, I want to try to slow and stop that change. BUT it is sometimes challenging to take appropriate action when around visitors - either needing me to shift my attention from them or ignore tha alert and take the hit. My wife and immediate family know and accept this has to happen, but the tradesman needing something clarified ... or the incoming phone caller ... or the delivery at the door ... Real moments needing some attention, potentially interfering my need to make a D decision.

These decisions are often semi-automatic, but sometimes need time to review: how much insulin do I still have on board from a recent meal, hence how much corrective insulin is appropriate. Or is the change real, rather than a momentary blip? Should I wait 5 mins for the next CGM reading or take a finger prick and a meter reading - which still needs time ... None of this is overly difficult, most of the time. But all too often stressful. However, this is my D response and I repeat we are all different.

Since the Dexcom G7 sensor is relatively new to the UK market, I deduce that your friend is well supported by a Hospital based D team; G7 comes from a Consultant's recommendation and the repeat prescriptions are handled automatically by that Hospital. It isn't prescribed unthinkly! It is, I think, an excellent system and I imagine a most useful step forward for your friend since she had the G7. Plenty of different "Alert" (= alarm) settings and choices of different sounds for the wearer.