New to this

[mummyange]

Hi I'm Angie and my son was diagnosed with type 1 diabetes when he was 15. He is now 17 and up until recently he was doing great but something changed and he has really bad anxiety and checks his levels constantly. His libre is never accurate so he checks his finger so they are a mess and sore! Just tonight his libre said 6.7 dropping quickly so he checked his finger and it was 11.3!! I am at a total loss of how to help and the doctors and hospital are actually useless and sometimes abrupt with him. He hasn't been fully taught how to manage anything and getting appointments is hard. It's causing my mental health to get worse and I hate watching him panic. Everything is on hold as there is no way he can start college until he gets this under control and I'm stuck because I am the only one he comes to for guidance and I really don't have a clue what to tell him half the time, it's making me sick with worry and just need help. Sorry for rambling on I just needed to get that out

 

[MrDaibetes]

Hi and welcome to the forum. This must be a frustrating situation to be in at the moment.

Type 1 diabetes, isn't easy and isn't controllable but is manageable. I understand you're having difficulty with the team at the moment when was the last time that you reached out? is your son on a pump or injections?

Libre can be funny sometimes when high & low so always check with finger pricks, if you think it is not accurate, have you spoken with your diabetes team about the accuracy if it's persistent?

Is your son on an insulin pump or injections?

 

[Inka]

Welcome @mummyange Sorry to hear about your son’s anxiety. Sometimes tech can be as much of a stress as a help. Is it hypos he’s worried about? Or is it just ‘bad’ results, high or low?

If he has hypo anxiety, he could ask if he’d qualify for funding for a Dexcom G7. I’ve found mine a million times more accurate than the Libre. It also has really good alarm options. It’s reduced my anxiety a lot. I only fingerprick if I have to now as the G7 is so accurate.

 

[SB2015]

Welcome to the forum @mummyange . I am pleased that you have found us.

I am sorry to read about the change in your son’s management, but it is totally understandable. Having more data available can be very helpful, but can also cause stress, especially when our diabetes doesn’t behave. I know that I checked very regularly at the start. The sensors are not totally reliable especially when we are high or low, but he might find that Dexcom is more reliable, and this should be available on NHS in place of Libre.

Is your son able to identify any change that is causing him increased stress? From his age has he started college this term? Is he doing applications for uni/college? At these times of transition it create additional pressure for all youngsters, and managing diabetes in addition is not easy, especially if he is concerned about managing this later.

I know that it has been difficult for people to get appointments With Health Care Professionals, but I think that if you can get a message through to the paediatric team at your local hospital, and explain the change it would be useful to at least get some email communication.

There are many resources targeted at teenagers with T1 which are very good. I cannot remember the names of them so will flag @everydayupsanddowns and @Josh DUK who will be able to direct you to these.

Do contact your own GP or self refer for some support and also use the
Diabetes UK helpline (0345 123 2399) Mon -Fri 9:00 am - 6:00 pm where there are trained counsellors that can help you and signpost you to other sources of help.

 

[mummyange]

Hi and welcome to the forum. This must be a frustrating situation to be in at the moment.

Type 1 diabetes, isn't easy and isn't controllable but is manageable. I understand you're having difficulty with the team at the moment when was the last time that you reached out? is your son on a pump or injections?

Libre can be funny sometimes when high & low so always check with finger pricks, if you think it is not accurate, have you spoken with your diabetes team about the accuracy if it's persistent?

Is your son on an insulin pump or injections?

He injects, we had the hospital last Monday and he was told to recalibrate his libre but it doesn't have that! He has been put on a waiting list for a pump but that won't be till at least next year.

 

[mummyange]

Welcome @mummyange Sorry to hear about your son’s anxiety. Sometimes tech can be as much of a stress as a help. Is it hypos he’s worried about? Or is it just ‘bad’ results, high or low?

If he has hypo anxiety, he could ask if he’d qualify for funding for a Dexcom G7. I’ve found mine a million times more accurate than the Libre. It also has really good alarm options. It’s reduced my anxiety a lot. I only fingerprick if I have to now as the G7 is so accurate.

His anxiety seems to be about everything. It's at a point where he isn't eating properly because he is afraid to inject incase they go either way. If his levels drop he has something to bring them up then they take a few hours to come up and by that point he has had too much and they go high!

 

[mummyange]

Welcome to the forum @mummyange . I am pleased that you have found us.

I am sorry to read about the change in your son’s management, but it is totally understandable. Having more data available can be very helpful, but can also cause stress, especially when our diabetes doesn’t behave. I know that I checked very regularly at the start. The sensors are not totally reliable especially when we are high or low, but he might find that Dexcom is more reliable, and this should be available on NHS in place of Libre.

Is your son able to identify any change that is causing him increased stress? From his age has he started college this term? Is he doing applications for uni/college? At these times of transition it create additional pressure for all youngsters, and managing diabetes in addition is not easy, especially if he is concerned about managing this later.

I know that it has been difficult for people to get appointments With Health Care Professionals, but I think that if you can get a message through to the paediatric team at your local hospital, and explain the change it would be useful to at least get some email communication.

There are many resources targeted at teenagers with T1 which are very good. I cannot remember the names of them so will flag @everydayupsanddowns and @Josh DUK who will be able to direct you to these.

Do contact your own GP or self refer for some support and also use the
Diabetes UK helpline (0345 123 2399) Mon -Fri 9:00 am - 6:00 pm where there are trained counsellors that can help you and signpost you to other sources of help.

He has not started college or even applied yet. It's hard to get in contact with doctors or the hospital as they refuse to speak to me as he is over 16 and i get that but he doesn't like talking to people. When he was with the kids diabetes team they were good but since moving up its so much harder to get anyone.

 

[Inka]

His anxiety seems to be about everything. It's at a point where he isn't eating properly because he is afraid to inject incase they go either way. If his levels drop he has something to bring them up then they take a few hours to come up and by that point he has had too much and they go high!

It’s easy to get into that kind of mental space @mummyange Type 1 can be hard. He’s having to take on the job of a pancreas and it’s far from easy.

The first thing I’d check is that his expectations are realistic. The important thing to remember is that perfection is impossible. The second thing to remember is that the Libre is his servant not his master. It’s there to provide him with information not sit in judgement on him. 70% Time in Range counts as very good control. Is he close to that?

Interestingly, you say he goes low, eats, then has to wait ages until his blood sugar goes up but then it goes to high. Importantly, is he fingerpricking when low? The Libre is less accurate at lower numbers and can lag behind. That is, it might look like he’s still dropping when his blood sugar is actually on the rise. This can mean people overtreat the low sugar. What’s he treating his lows/hypos with? If he’s taking glucose and it’s taking hours for his blood sugar to come up, then that might suggest his basal dose is too high and/or he took more bolus (meal) insulin than he needed.

Has he done a recent basal test?

Also, in your first post you said that “something changed”. Did he have a bad hypo or something that frightened him and has contributed to this anxiety?

 

[everydayupsanddowns]

So sorry to hear what a tough time your son is having, and the impact it is having on you both. It’s natural for Mum’s to worry, and this is a big change for all of you to adapt to. Plus diabetes can be fickle and contrary at the best of times, but especially in the beginning, and it’s a really steep learning curve.

Sorry to hear his clinic doesn’t seem to have been very supportive or approachable. And them not knowing that Libre cannot be calibrated must hardly inspire confidence!

Hang in there… Diabetes can be serious, but it can be managed well (especially these days), and things will get easier.

Have you had much information about fine tuning insulin management, carb counting, different dosing strategies, adjusting for exercise and activity etc? For all the apparent simplicity of food+insulin = stable BG levels, there are so many other factors that affect how doses work (or sometimes don’t!)

I wonder of it might help to have a book to refer to, to give you a good grounding while he waits for a structured education course like DAFNE. Two that are often recommended here are:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes. And

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

Good luck and keep us posted. Ask away with any questions, confusion, or diabetes randomness that he is struggling with - the forum hive mind has most likely faced the same thing!

 

[Tdm]

If he has lost confidence in his libre its worth moving over a dexcom. You need tools you can trust, especially if anxious. With a good cgm you can 'outsource' some of your diabtes watchfullness, and finger pricking too much does lead to hurty fingers

 

[helli]

finger pricking too much does lead to hurty fingers

What would you consider to be "too much"?
I ask because Libre and co often promote their CGMs as an end to "painful" finger pricks which has always annoyed me.
Prior to self funding the Libre a number of years ago, I was finger pricking an average of 12 times a day for years. It was inconvenient but not painful because I was taught how to avoid "hurty fingers" with the right techniques.

Sadly, people with Type 2 are still rarely able to have access to CGMs. Constantly reading about painful finger pricks is going to discourage them from learning valuable information about their condition and their body

Sorry this is a slight distraction from the original topic of the thread but the problem with not trusting a CGM is not "hurty fingers".

 

[Tom1982]

Hello Angie, hope you’re all doing okay? Can definitely sympathise with the mental side of things as it ain’t easy at all is it! There is no off switch!! Had some great help from people on here for our 6 year old daughter which sorted us right out so your on the right place! Has his basal dose been looked at? Getting that right really steadied things for Josie.

 

[Proud to be erratic]

Hello @mummyange,

I've been hesitant to add further comment: I'm T3c rather than T1 after a total pancreatectomy, I'm a relative newcomer to this D malarkey (less than 4 yrs in) and I'm the wrong side of 70 so not well placed to offer advice to a 17yr old. But ... a number of things keep catching my attention in this thread. So here goes:

I didn't get Libre until a full 12 months after my surgery and instant entry to this "D club". That did at least give me confidence in managing solely with finger pricking and recognising my own warning signals. That has subsequently helped me since I found, laboriously, that my body and Libre are not great friends! My Libre readings were frequently seriously adrift of actual finger prick readings. Initially I blamed the tech, somewhat unfairly as it transpired, but had my own confidence in my own recognition of my bg status. Also, despite watching each of the Abbott Freestyle videos about getting the best from Libre they DID NOT tell me much about the limitations of using CGM. Have you and perhaps much more importantly your son seen and understood these? I'm attaching a link below to these in case you haven't - because without understanding g those limitations one can expect too much from this tech and then get frustrated when it seems to not be delivering satisfactorily.

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...

forum.diabetes.org.uk

I can't defend any Diabetes Nurse erroneously telling a young and inexperienced Patient to calibrate Libre 2. But wonder if there was a slight misunderstanding on your son's part? During a conversation with my Consultant, who clearly knew about the capabilities and limitations of L2, we talked about a "mental" calibration by me of the differential between L2 interstitial readings and actual BG from finger pricks. I did spend a full 12 months working with Libre providing readings that were adrift because the trend arrows for direction of BG movement were reliable and bexause even poor L2 readings were still much better than no readings. BUT I am a retired Engineer and comfortable with such mental arithmetic; I also frequently sought replacement Sensors from Abbott when the differential reached 4 and they always sent a replacement. I also insisted on a replacement when the sensor would start by reading high (or low) and then over a few days reversed into being low (or high). By this stage I felt the sensor was unfit for purpose and I simply had to finger prick whether very low, very high or somewhere mid range - before taking any bolus because I couldn't trust any sort of reading to be sure whether I was actually high or low. I had over 50% of all sensors replaced, without any quibbling by Abbott; but its still a hassle and inconvenient to request replacements. I also persuaded my GP to prescribe an extra 2 sensors to give me a buffer for these frequent changes, after explaining the 50% failure rate.

In mid 2022 NICE published a significant revision to their Guidelines for all Health Care Practicioners (HCPs) (ie GP Surgeries and Hospitals). This Guidance widened the availability of CGMs to all T1s and importantly for me increased the choices of CGMs for both basic level entry as well as for those with more specialised needs. So Libre 2 now sits amidst 4 systems at pretty much the same cost to Libre 2. One of those 4 is now the Dexcom One system - a new product from Dexcom priced to compete with Libre 2. Getting Dexcom One was a bit of a hassle during 2022, but I understand is now pretty widely available across England and Wales within the NHS. It can also be purchased direct from Dexcom should someone choose to self fund that option. Recently Dex One has been upgraded to make it possible to calibrate it, a capability I didn't experience. PERHAPS your son needs to move to a different CGM in order to regain some trust in the tech. Knowing what is available simply from a change of prescription is a great help when dealing with HCPs who are resisting!

At the more expensive level of CGMs there are further options, including Libre 3, Dexcom G6 and Dexcom G7. These are only authorised by Hospital based Diabetes Specialised Teams and from my limited experience seem to need formal approval from within that Hospital Team - with the consequence that once approved they are provided under a contract between a Hospital and the Manufacturer, are delivered quarterly by the Manufacturer direct to the User and are NOT part of a GP's repeat prescriptions. The Hospital is picking up the cost, not the GP Surgery - which is then passed back to the NHS. I found that by getting a change from very unsatisfactory Libre 2 to a still unsatisfactory (but less so) Dexcom One - I'd got the door wedged slightly open for my request (plea) for Dexcom G7; I did self-fund G7 initially and that allowed me to demonstrate that G7 worked well, when Dex One and L2 didn't. I shared my Libre data from Libre 2 and my Dex One and G7 data from Dexcom's equivalent web-based system of Clarity - which helped reinforce the point that G7 was clearly doing the right thing - when L2 and Dex One weren't. I also made sure I documented each time a sensor had failed prematurely and added comments to highlight when I was getting clearly erroneous readings.

I particularly agree with @helli that finger pricking shouldn't be particularly hurtful. I also finger pricked over 10 times daily before I had CGM. There are a number of You Tube videos demonstrating techniques and there could also be one from the manufacturer of your son's lancet and meter system. At the very least a review of his fp techniques ought to be helpful. There might also be scope to get his fp system changed for something a bit kinder.

Finally I also understand that because your son is over 16 there is a reluctance for medical folk to keep you at arm's length. But if your son specifically asks that you accompany him I think there is an obligation to allow that. But you would have to be careful to not "take over" and unwittingly devalue your son's views; its a tricky balance for any parent. I hope some of this helps.

 

[mummyange]

It’s easy to get into that kind of mental space @mummyange Type 1 can be hard. He’s having to take on the job of a pancreas and it’s far from easy.

The first thing I’d check is that his expectations are realistic. The important thing to remember is that perfection is impossible. The second thing to remember is that the Libre is his servant not his master. It’s there to provide him with information not sit in judgement on him. 70% Time in Range counts as very good control. Is he close to that?

Interestingly, you say he goes low, eats, then has to wait ages until his blood sugar goes up but then it goes to high. Importantly, is he fingerpricking when low? The Libre is less accurate at lower numbers and can lag behind. That is, it might look like he’s still dropping when his blood sugar is actually on the rise. This can mean people overtreat the low sugar. What’s he treating his lows/hypos with? If he’s taking glucose and it’s taking hours for his blood sugar to come up, then that might suggest his basal dose is too high and/or he took more bolus (meal) insulin than he needed.

Has he done a recent basal test?

Also, in your first post you said that “something changed”. Did he have a bad hypo or something that frightened him and has contributed to this anxiety?

He seems to panic when his levels go below 9 which is where we want them but it doesn't help, his anxiety kicks in! If they drop he has some irn bru and a couple of gummy bears. We were at the hospital recently and they told him to up his basal and to start with it was fine but then recently his levels started going low. This seemed to start when he wasn't feeling good and a nurse said it was probably a virus and ever since he worries about everything. When he was first diagnosed and until then he was doing great, just took it in his stride. He doesn't go by his libre, he would rather pricking his finger. Its so frustrating to watch him go from a happy ,funny boy looking forward to going to college and getting the career he wants to panicking constantly

 

[rebrascora]

I wonder if a better strategy for dealing with lows would give him some confidence. Having "some Iron Bru and a couple of gummies" just seems a bit imprecise. Does he measure how much Iron Bru he drinks for a hypo. I imagine it will be too easy to end up drinking too much and going high as I don't believe Iron Bru comes in small cans like Coke etc

I know I used to fear hypos until I gained confidence in dealing with them. Would it be possible to set aside some time with him to do some experimenting, so that he can gain some confidence in his hypo treatment working faster than he thinks it is. Libre makes it look like your levels take much longer to come up than they actually do, so the temptation is to have more carbs than you need and also it is frightening when it looks like your levels are not coming up fast enough.
Having a good disciplined strategy for dealing with lows and developing a confidence in my hypo treatment to work fast has given me so much confidence in managing lows myself that now, even with nocturnal ones I can be back to sleep in minutes.

I am not suggesting you deliberately cause a hypo but perhaps choose a time when his levels are stable and there is no active bolus insulin in his system and you both have plenty of time at least 3 hours to do the experiment, maybe one morning perhaps at the weekend when you can be in the house together for a few hours. Skip breakfast but inject enough insulin (ie a correction dose) as soon as he wakes up to bring his levels down to about 6 and then don't eat any breakfast but just watch and wait and have a measured 10g of fast acting carbs handy. 10g carbs will push his levels up by about 3mmols, so from 6 that will take him back up to about 9mmols where you say he is currently comfortable. Ma
I personally like Jelly Babies because they are small, light and convenient to carry and they are about 5g carbs each. I divide them into 2JB portions in little bags, so I am not temped to overtreat. Maybe 3 Lift Glucose tablets might be a good option for your son. The important thing to understand with hypos is that whatever you use absorbs quickest through the cells inside your mouth so if it is something chewy, chew it really well and keep rolling the bits around inside your mouth for a while to help it to absorb quicker. If it is liquid, swill it round inside your mouth rather than just gulping it straight down.

Anyway, once you have injected the right amount of insulin to bring him down to about 6, monitor his levels via Libre until he maybe gets to 7 if he doesn't trust Libre and then switch to finger pricks at that point. When he gets to 6 (or 6.5 if he is very nervous), eat the 10g of fast acting carbs, chewing well and then wait 15 minutes and finger prick again. Set a timer if need be, so that he is not tempted to test sooner. He is still in a very safe range at 6 so he will not suddenly go hypo in that 15 mins. Ignore Libre as it will almost certainly show his levels continuing to drop due to the nature of how it works. This is one of the main times when it is not reliable so if he is nervous, don't look at it. When he finger pricks after 15 mins he will almost certainly see his levels have come back up a bit and in another 15 mins I would expect that those 10g carbs will have taken him back up to about 9, if you have calculated the insulin dose correctly. Be aware that you may need 2-3 hours to carry out this experiment and it is important for him not to eat of drink anything during that time which will impact his levels. A chunk of cheese or a scrambled egg should be reasonably ok if he is starving! You do have to be quite disciplined with this. Experimenting with your body and your insulin and your food, is key to gaining the confidence to manage your diabetes well. Make sure he has plenty to keep him occupied during the experiment but nothing too physical as that can cause levels to drop faster and that is an experiment for when he is more confident with the basics.

I am making an assumption here that you understand correction doses and know his correction factor, so for example 1unit of fast acting insulin lowers his levels by 3mmols or 2mmols or whatever and then calculate how many units he needs to bring his levels down to 6 from his waking level.... assuming he is above 6 when he wakes up.

 

[Inka]

It sounds like he’s afraid of a nasty drop @mummyange so panicking when he sees the arrow going down. Hypo anxiety is a real thing. There’s no fast cure as you/he needs to gradually rebuild his confidence. This can take some time. Having similar meals helps, eg the same breakfast and lunch, because things are more predictable then.

He can gradually and cautiously lower the level he’s happy at. I did this by slightly reducing my boluses, then slowly getting them back to the right amount. What I found really helpful was having a Dexcom G7. It allows the Low alarm to be set higher, a Falling Fast alarm to be set, etc, but most importantly it’s amazingly accurate so you can trust it (unlike the Libre, i found).

For hypos, I suggest Dextro tablets - quick and easy, and simple to adjust the dose. Irn Bru isn’t a great choice because like most soft drinks it’s now full of sweeteners (thanks, stupid sugar tax).Regular Coke (ie the proper branded one) still has a proper amount of sugar, so if he prefers a drink, he can get 150ml cans of that.

 

[SB2015]

but then recently his levels started going low.

If your son’s definition of going low is going below 9 then it will be difficult for him to get the confidence in dealing with levels in range. Just read through @Inka ’s suggestions about developing confidence with dealing with hypos and also measured responses to these should help him to get a more accurate measure on managing his levels.

It is very understandable to fear hypos, but difficult to avoid Wobbliness without measuring his responses. I hope that Inka’s suggestions help with this.