Late onset t1 here 10yrs in ....

[Abrae]

Good morning everyone, I’ve joined this community as I’m really struggling since having a baby (my fourth cherub ) and anxious about her developing t1....

Also I like talking!

please come say hi to me , tell me about about your journey.

Happy Monday!

 

[Inka]

Hi @Abrae 🙂 You beat me in the baby stakes - I only have three Yes, I was concerned when I had my first baby because of the risk of them getting Type 1 but my consultant explained that the risk is still low. So now, although obviously I watch their health for all things, I don’t worry too much about Type 1.

I’ve had Type 1 almost 30 years. I’ve had a pump for the last 17 or so of those years. I don’t have any other tech. Do you do injections or do you pump?

 

[everydayupsanddowns]

Welcome to the forum @Abrae

Yes I think worry is part and parcel of parenthood. And I’ve certainly had moments of T1 worry over the years about my two. I think it’s perfectly natural. Worry won’t change anything though - so it’s not worth feeding and maintaining 🙂

 

[SB2015]

Welcome to the forum @Abrae from another late starter. I was 53.

As @Inka has said there is a small chance of your child developing T1, but you will spot it if that happens and they would have an expert on hand. Also as you know already there is nothing that anyone can do to prevent it, although the most recent research in ways to slow it’s development is interesting.

How do you manage your T1. MDI or pumping? I switched to a pump eight years ago which made life a lot easier, especially once I got the Libre. I.am now on a closed loop system which certainly keeps me in range with a lot less effort.

This a good place for chat, so good to have you on board.

 

[Abrae]

Hi @Abrae 🙂 You beat me in the baby stakes - I only have three Yes, I was concerned when I had my first baby because of the risk of them getting Type 1 but my consultant explained that the risk is still low. So now, although obviously I watch their health for all things, I don’t worry too much about Type 1.

I’ve had Type 1 almost 30 years. I’ve had a pump for the last 17 or so of those years. I don’t have any other tech. Do you do injections or do you pump?

I just have injections, my encro told me I wouldn’t be offered a pump until my sugars were under control, they never have been, I’ve had 6 dka and two seizures, nearly resulting in loss of life twice...

 

[Abrae]

Welcome to the forum @Abrae

Yes I think worry is part and parcel of parenthood. And I’ve certainly had moments of T1 worry over the years about my two. I think it’s perfectly natural. Worry won’t change anything though - so it’s not worth feeding and maintaining 🙂

I’m desperately trying not to, but this child has turned me into a nervous wreck! I think it doesn’t help that I’m on my own all the time, apart from 4 kids and a grandson!

 

[Abrae]

Welcome to the forum @Abrae from another late starter. I was 53.

As @Inka has said there is a small chance of your child developing T1, but you will spot it if that happens and they would have an expert on hand. Also as you know already there is nothing that anyone can do to prevent it, although the most recent research in ways to slow it’s development is interesting.

How do you manage your T1. MDI or pumping? I switched to a pump eight years ago which made life a lot easier, especially once I got the Libre. I.am now on a closed loop system which certainly keeps me in range with a lot less effort.

This a good place for chat, so good to have you on board.

I have injections, not eligible for a pump! Apparently.... I have the libre now, I have to say I don’t like it much, I had the Dexcom which I loved but can’t afford anymore I am afraid I have no idea what a closed loop system is I may do a bit of researching , if I get a few moments! I don’t even get chance to eat anymore, how terrible is that for my diabetes!

 

[Inka]

I just have injections, my encro told me I wouldn’t be offered a pump until my sugars were under control, they never have been, I’ve had 6 dka and two seizures, nearly resulting in loss of life twice...

How awful for you! Have you had proper support to help you get control of your sugars? That sounds so horrible.

If you’re happy to explain a little more here, you’ll get some suggestions of things that might help you.

 

[rebrascora]

Hi and welcome from me too. I was a late starter 2 years ago at the age of 56. I am shocked that you aren't impressed with the LIbre but then I understand that Dexcom is a bit better system.
I am also just on Multiple Daily Injections (MDI) I use Fiasp and Levemir and follow a low carb diet to help me manage my levels. I would fight tooth and nail if they ever tried to change my Levemir but I may ask to try a different quick acting insulin next time I have an appointment. I have tried NovoRapid but it takes over an hour to get going for me on a morning and I get distracted and forget to eat breakfast because I am waiting so long for it to kick in. Fiasp is about 45mins on a morning and 15-20 prebolus time afternoon and evening which is better but sometimes correction doses just seem to vanish without any effect at all and sometimes they sit there and do nothing until 1 do some exercise 3-4 hours later and then hypo me. It is just a bit unpredictable.
Which insulins are you using? Has illness led to your DKAs? They must have been really scary. I am lucky that I haven't had one and hope never to. Do you suffer with hypos as well as going too high?

 

[SB2015]

I have injections, not eligible for a pump! Apparently.... I have the libre now, I have to say I don’t like it much, I had the Dexcom which I loved but can’t afford anymore I am afraid I have no idea what a closed loop system is I may do a bit of researching , if I get a few moments! I don’t even get chance to eat anymore, how terrible is that for my diabetes!

You have had a rough time with all the DKAs and seizures.

The Libre can help you to work out what is happening between meals, as the Dexcom did.
I found it most useful to work out the timing of my injections before meals. This enabled me to reduce my post meal spikes most of the time.

Are you able to identify the cause of your DKAs? It is often associated with illness, and I have always been surprised at what impact this has on my insulin needs. What advice have they given you around this? Are you happy with the sick day rules that you have been given?

Your team are asking you to get your levels sorted before they consider assessing you for a pump. What strategies have they suggested to enable you to do this? I know my management took a big leap forward when I did the Dose Adjustment For Normal Eating (DAFNE) course, which focused on carb counting, sick day rules and managing exercise.

(My closed loop is made up of a sensor and a pump that ‘talk to each other’ and make adjustments. )

 

[Abrae]

Hi and welcome from me too. I was a late starter 2 years ago at the age of 56. I am shocked that you aren't impressed with the LIbre but then I understand that Dexcom is a bit better system.
I am also just on Multiple Daily Injections (MDI) I use Fiasp and Levemir and follow a low carb diet to help me manage my levels. I would fight tooth and nail if they ever tried to change my Levemir but I may ask to try a different quick acting insulin next time I have an appointment. I have tried NovoRapid but it takes over an hour to get going for me on a morning and I get distracted and forget to eat breakfast because I am waiting so long for it to kick in. Fiasp is about 45mins on a morning and 15-20 prebolus time afternoon and evening which is better but sometimes correction doses just seem to vanish without any effect at all and sometimes they sit there and do nothing until 1 do some exercise 3-4 hours later and then hypo me. It is just a bit unpredictable.
Which insulins are you using? Has illness led to your DKAs? They must have been really scary. I am lucky that I haven't had one and hope never to. Do you suffer with hypos as well as going too high?

I have fiasp too but it works quite quickly for me, the novorapid did not! Same as you nearly and hour.... so much for rapid eh? Yes hypos are common, it was those that made me fit, and knocked out my hypo awareness, I have none, and I mean none, I can go to 2.5 and feel tickety boo!

 

[Abrae]

You have had a rough time with all the DKAs and seizures.

The Libre can help you to work out what is happening between meals, as the Dexcom did.
I found it most useful to work out the timing of my injections before meals. This enabled me to reduce my post meal spikes most of the time.

Are you able to identify the cause of your DKAs? It is often associated with illness, and I have always been surprised at what impact this has on my insulin needs. What advice have they given you around this? Are you happy with the sick day rules that you have been given?

Your team are asking you to get your levels sorted before they consider assessing you for a pump. What strategies have they suggested to enable you to do this? I know my management took a big leap forward when I did the Dose Adjustment For Normal Eating (DAFNE) course, which focused on carb counting, sick day rules and managing exercise.

(My closed loop is made up of a sensor and a pump that ‘talk to each other’ and make adjustments. )

Ah yes! I have heard of that, my nurse was telling about it, it not available here yet, or wasn’t a while ago, I haven’t done DAFNE I did KAT1E (Katie) Kent adult type 1 education (if I remember correctly, it was about 6-7 years ago!) I don’t like my encro much, he’s supposed the be the best in his field down here but, he suggested I skip a sandwich a day to lose weight , which would then help....it didn’t...
I have now lost weight , not enough yet but I’m 5.5 stone down in the last 6 months, big issue being I don’t have time to eat! (I know I’m messaging now, but I’m actually in the bathroom! ) I don’t mind as I needed to lose it but my team are really unhappy as I’m not even zapping my sensor let alone eating.... can’t seem to win

 

[Abrae]

How awful for you! Have you had proper support to help you get control of your sugars? That sounds so horrible.

If you’re happy to explain a little more here, you’ll get some suggestions of things that might help you.

Happy to explain, I guess they have given me support, I just don’t know anyone else who’s diabetic to compare notes with!

 

[Inka]

I have fiasp too but it works quite quickly for me, the novorapid did not! Same as you nearly and hour.... so much for rapid eh? Yes hypos are common, it was those that made me fit, and knocked out my hypo awareness, I have none, and I mean none, I can go to 2.5 and feel tickety boo!

If you’ve lost hypo awareness, you might be entitled to a Dexcom for free. I know of one person who got it for no awareness of hypos.

I had seizures from nocturnal hypos, and they were the reason I got my pump. No basal insulin could match my needs but the pump can (because the basal can vary hour by hour as needed). I had to fight for it but I got it in the end. It can make a big difference if your problems are caused by something the pump can sort out.

 

[rebrascora]

Reading your messages, I wonder if you are suffering from diabetic "burn out" if you are not scanning your levels or eating. I appreciate you say that you are busy, but I get the feeling that you have lost interest in self care with regard to your diabetes. This is not a criticism in any way as "burn out" is a well known problem and reaching out to the forum is a great first step in finding your motivation and a way to get back on track and improve your diabetes management, as we are all trying to do..... it is a constant work in progress.
I don't know how I would have survived without the input from experienced members here, so I hope you are able to come and visit often and get the support you need from people who live with it and face the same grinding day by day, meal by meal challenges and frustrations and share in each other's successes and celebrations too. You also need to reach out to your DSN and ask for more help or perhaps a referral for some talking therapy perhaps.

I can't begin to imagine how hectic your life must be with 4 children, but you need to be healthy to look after them so it is important that you make time to look after your own health first.

 

[Flower]

Hi @Abrae and welcome 🙂

I'm sorry you've been having such a frightening time with DKA and seizures. If you have no hypo awareness and have tried running your levels a bit higher for a while and tried out any advice your Diabetes team have given you (if they have?) then you could qualify for a funded cgm system, from my experience with no hypo awareness it really helps with a supportive Consultant and team - this is from Diabetes UK site on the NICE guidelines for CGM

What NICE say about CGM for adults:​

If you have type 1 diabetes and are pregnant you should be offered real-time continuous glucose monitoring (CGM) free on the NHS.

If you are pregnant, on insulin and have type 2 diabetes, gestational diabetes or another type of diabetes, CGM should be considered for you if you have severe hypos (regardless of your awareness) or if you have unstable blood sugar.

A CGM should also be considered for anyone with diabetes who has any of the following:

• more than one severe hypo a year with no obvious cause
• complete hypo unawareness
• more than 2 hypos a week, with no symptoms and which affect day to day life
• an extreme fear of hypos
• an HbA1c level of 75mmols/mol despite testing at least 10 times a day

You'll need to be prepared to use the CGM at least 70% of the time. And the CGM should be provided by a centre that are expert in using it, as part of strategies to improve your HbA1c level and reduce hypos.

Here's the full page https://www.diabetes.org.uk/guide-t...tes/testing/continuous-glucose-monitoring-cgm

 

[Abrae]

If you’ve lost hypo awareness, you might be entitled to a Dexcom for free. I know of one person who got it for no awareness of hypos.

I had seizures from nocturnal hypos, and they were the reason I got my pump. No basal insulin could match my needs but the pump can (because the basal can vary hour by hour as needed). I had to fight for it but I got it in the end. It can make a big difference if your problems are caused by something the pump can sort out.

I have asked about the Dexcom but they said because the new libre has alarms I could on have that, I don’t like them as the Dexcom is hidden out of sight and doesn’t come off... out of 22 libre sensors I’ve had , 18 have fallen off! And they’re ugly, I won’t wear short sleeves anymore...

 

[Abrae]

Hi @Abrae and welcome 🙂

I'm sorry you've been having such a frightening time with DKA and seizures. If you have no hypo awareness and have tried running your levels a bit higher for a while and tried out any advice your Diabetes team have given you (if they have?) then you could qualify for a funded cgm system, from my experience with no hypo awareness it really helps with a supportive Consultant and team - this is from Diabetes UK site on the NICE guidelines for CGM

What NICE say about CGM for adults:​

If you have type 1 diabetes and are pregnant you should be offered real-time continuous glucose monitoring (CGM) free on the NHS.

If you are pregnant, on insulin and have type 2 diabetes, gestational diabetes or another type of diabetes, CGM should be considered for you if you have severe hypos (regardless of your awareness) or if you have unstable blood sugar.

A CGM should also be considered for anyone with diabetes who has any of the following:

• more than one severe hypo a year with no obvious cause
• complete hypo unawareness
• more than 2 hypos a week, with no symptoms and which affect day to day life
• an extreme fear of hypos
• an HbA1c level of 75mmols/mol despite testing at least 10 times a day

You'll need to be prepared to use the CGM at least 70% of the time. And the CGM should be provided by a centre that are expert in using it, as part of strategies to improve your HbA1c level and reduce hypos.

Here's the full page https://www.diabetes.org.uk/guide-t...tes/testing/continuous-glucose-monitoring-cgm

Thank you I’ll have a read, unfortunately my senior specialist didn’t believe me when I said I have 0 symptoms of a hypo, he just said “what really none??” I guess until I have more hospital visits and or seizures, he will still not believe me ‍♀️

 

[Abrae]

Reading your messages, I wonder if you are suffering from diabetic "burn out" if you are not scanning your levels or eating. I appreciate you say that you are busy, but I get the feeling that you have lost interest in self care with regard to your diabetes. This is not a criticism in any way as "burn out" is a well known problem and reaching out to the forum is a great first step in finding your motivation and a way to get back on track and improve your diabetes management, as we are all trying to do..... it is a constant work in progress.
I don't know how I would have survived without the input from experienced members here, so I hope you are able to come and visit often and get the support you need from people who live with it and face the same grinding day by day, meal by meal challenges and frustrations and share in each other's successes and celebrations too. You also need to reach out to your DSN and ask for more help or perhaps a referral for some talking therapy perhaps.

I can't begin to imagine how hectic your life must be with 4 children, but you need to be healthy to look after them so it is important that you make time to look after your own health first.

Hi, yes it is very difficult, it’s been worse than usual due to the covid, not being able to have any friends or family come and help, so I can eat or have a shower etc.... I’m ok, the weight loss is a good thing, that’ll help the diabetes, it’s the night hypos that worry me most, I’ve got jelly babies , I just have got to remember to have a snack before going to bed! The memory loss doesn’t help there, funny enough during my pregnancy my bloods were absolutely amazing! I was 85 and dropped to 48 on the hba1c ! My doctors were amazed now.... they’re really poor, I’ve not seen my specialist for a long time, when I had my telephone appointment I couldn’t answer it! ‍♀️ I just need about 4-6 hours extra each day and I’ll be grand!

 

[rebrascora]

I imagine the effort needed to maintain really good control during pregnancy isn't sustainable longer term, just like a diet is for a set time scale and then when we hit our target weight we start to relapse, so I would imagine it is normal for control to loosen quite a lot after the baby is born, not only because you no longer need to be so strict, but also because you have so much more to do with a new baby to look after. It can't be easy. I know we have another member who is really struggling to get control back after having her baby nearly a year ago. I am sure it will be quite a common problem and Covid has definitely added to that in all sorts of ways.
Try to set yourself some very small achievable targets. It might just be to check your levels 3 or 4 times a day if that is something that you are struggling with.

Have to say I love my Libre and I am so grateful for it and I am actually really happy to display it publicly and show/explain to anyone who comments on it. I don't feel any stigma and I think we should be encouraged to be more open about our diabetes, just like any other condition because that helps it to be more socially accepted. I think the TV adverts for Libre and Dexcom really help and elite athletes like cyclists using them even makes them a bit trendy, so I am very proud to display mine when I have short sleeves. I haven't used the Dexcom and maybe if I had, I would find the Libre a little less "shiny" by comparison but I think we have to remember that this technology is a privilege and can be a huge benefit and we should make the most of it if we get prescribed it. There are a lot of people who would like it but can't get it. As regards them coming off, I lost one in the shower the other day but that was because I hadn't taped it and I was careless. I think if you are having as much of a problem with adhesion as you have, then taping it would be the answer. When it is a matter of life and death, which it clearly is for you with no hypo awareness, then doing everything you can to make sure it stays in place and works is a small price to pay in my opinion. That said, when you are stressed and struggling to think straight, I know that these small considerations can all just be another thing that you don't have time or motivation to address.