Hello!

[Stubby]

Hello. My first post on this forum. I have been type one since 2007 when I was in my early forties. I had no trouble with diabetes before that but in 2007 I got sepsis and after recovering from that, I was diagnosed with type one. Nobody said what could have caused it for years and then last year I found out that it could have been steroid induced as I was on high doses of prednisolone at the time. Anyway, thanks for letting me into the forum.

 

[SB2015]

Welcome to the forum @Stubby from another late starter with T1 (53)

With T1 the destruction of your beta cells will have started quite a while before diagnosis. It is often some other infection that triggers the crisis as an illness will increase our resistance to insulin, and so require the body to make more insulin, which our bodies just won’t be able to do. This then triggers the symptoms of T1 as our body starts to react to the lack of insulin. Whatever the cause, at that point we need more insulin and that is only going to come from our injections.

What insulin’s are you using? Are you using injections or a pump?
there is plenty of experience to tap into on here, so just ask any questions you have, or if you feel like a rant there are plenty on here who ‘get it’.

I look forward to hearing more from you.

 

[Stubby]

Welcome to the forum @Stubby from another late starter with T1 (53)

With T1 the destruction of your beta cells will have started quite a while before diagnosis. It is often some other infection that triggers the crisis as an illness will increase our resistance to insulin, and so require the body to make more insulin, which our bodies just won’t be able to do. This then triggers the symptoms of T1 as our body starts to react to the lack of insulin. Whatever the cause, at that point we need more insulin and that is only going to come from our injections.

What insulin’s are you using? Are you using injections or a pump?
there is plenty of experience to tap into on here, so just ask any questions you have, or if you feel like a rant there are plenty on here who ‘get it’.

I look forward to hearing more from you.

Yes, it probably did start sometime before as I was on high doses of steroids for a while before I was diagnosed. But it got really seriously bad after the sepsis. I never really had any symptoms of hyperglycaemia before that but after ward my eyesight started to rapidly deterorate and I kept losing weight (about 5 stones in total) and (as the nurse said) I was peeing for England. I use MDIs and I take Novorapid as my bolus and Levemir twice a day.

 

[rebrascora]

Hi and welcome from me too.

I was a late starter too, 2.5 years ago aged 56. Being a member of the forum has helped me enormously to understand and manage my diabetes and saved my sanity!
How do you find your Levemir and NovoRapid? I love the flexibility of Levemir but NR isn't as "rapid" as the name suggests for me, so I am now using Fiasp, which is a little quicker, but still takes about 20 mins min to kick in.

Do you have Freestyle Libre sensors or are you reliant on finger pricks for BG testing? Libre is brilliant if you haven't tried it... well worth a go and there is currently a free trial on.... Ask if you want more info.

Is there anything particular that you find difficult with managing your diabetes? The combined knowledge and experience of the forum means that there is always someone with a suggestion for you to try if you have a particular difficulty or problem.

Anyway, look forward to getting to know you better.

 

[everydayupsanddowns]

Welcome to the forum @Stubby

Sorry to hear about your run-in sepsis - must have been really grim

How have you found it over the past 15 years or so? Is there anything in particular that you find difficult or frustrating about living with T1?

Have you been offered a structured education course over the years (DAFNE, BERTIE or a local equivalent)? And have you been able to get access to a Libre or other sensor or do you rely on finger pricks?

Look forward to having you as part of our online community 🙂

 

[Stubby]

Welcome to the forum @Stubby

Sorry to hear about your run-in sepsis - must have been really grim

How have you found it over the past 15 years or so? Is there anything in particular that you find difficult or frustrating about living with T1?

Have you been offered a structured education course over the years (DAFNE, BERTIE or a local equivalent)? And have you been able to get access to a Libre or other sensor or do you rely on finger pricks?

Look forward to having you as part of our online community 🙂

Thanks. It's had its ups and downs. the care hasn't been the best from my GP surgery for my diabetes. I've found it frustrating having highs for no reason and then I recently found out that steroids cause insulin sensitivity and nobody ever told me that. Since I found that out I realised that my daily steroid tablets cause my insulin to not be very effective between 5-8 hours after taking the tablets and knowing that has helped me to get much better control of things. I've done a carb counting course but still waiting for BERTIEor DAFNE to be offered.
I have just been given finding for the libre sensor and got a miaomiao yesterday so I am playing with my new toys right now. I had a trial of the libre two and loved it but at the moment the GP is prescribing libre one. still great to have it and I hope that being able to continuously monitor my BG will let me get even better control.

 

[Stubby]

Hi and welcome from me too.

I was a late starter too, 2.5 years ago aged 56. Being a member of the forum has helped me enormously to understand and manage my diabetes and saved my sanity!
How do you find your Levemir and NovoRapid? I love the flexibility of Levemir but NR isn't as "rapid" as the name suggests for me, so I am now using Fiasp, which is a little quicker, but still takes about 20 mins min to kick in.

Do you have Freestyle Libre sensors or are you reliant on finger pricks for BG testing? Libre is brilliant if you haven't tried it... well worth a go and there is currently a free trial on.... Ask if you want more info.

Is there anything particular that you find difficult with managing your diabetes? The combined knowledge and experience of the forum means that there is always someone with a suggestion for you to try if you have a particular difficulty or problem.

Anyway, look forward to getting to know you better.

Thanks Levemir is ok and im ok with novorapid but I know i need to inject at least 30 minutes before eating. As long as I remember to do that then its fine. I just this month got the Libre sensors and I love them, knocked the first one off on the car door . The best thing about having it is having alarms at night to warn me of a low. I had the miaomiao on for the first time last night and it gave me a warning when I hit 4mmols at 2am. took a couple of glucose tabs and sitting nicely at 5.6 at 6am when I woke up.
The thing that I found difficult more than anything else was the general lack of support from the NHS and the lack of understanding of diabetes. There's things that I felt that they should have advised me on that I have had to find out for myself. For instance, I have been on Steroids since before I was diagnosed as diabetic but nobody ever told me that there is such a thing as steroid induced diabetes and, worse still, nobody explained that steroids cause insulin resistance. I found this out from the internet when trying to understand why I could have only about 12 grams of carbs at breakfast and see my BG go through the roof! I was the steroid tablet kicking in that were causing the problem. I could go on all day but this reply is already long enough and well done if you've had the patience to read this far.

 

[rebrascora]

Good to hear you have Libre. It really is a "game changer". Do be aware that it isn't 100% accurate though and you can get compression lows through the night if you lie on the sensor for any length of time, so always best to double check if you get a low alarm through the night with a finger prick. To be honest, you are supposed to check any low readings or high ones before you treat them as the Libre can be out by several mmols above and below range. I tend to do occasional checks when my levels are steady just to check the calibration and take any consistent discrepancy into account when I bolus etc.
The time in range function is a great feature and I find it much more helpful mentally in managing your diabetes than the premeal finger prick target ranges. I think the Time in Range/Target gives you much more achievable goals so it sets you up for success rather than feeling like you are failing if your pre meal readings aren't always in target. I treat my diabetes more like a long running computer game now with Libre and I am currently on a personal best of 96% TIR for the past 7 days and working hard for a possible 97, but knowing that at some point a spanner will drop into the works and I will drop into the 80s again but the goal is 70% so I am still winning even when I don't do quite so well.

Sorry to hear the steroids are causing you BG upheaval. It is common knowledge here on the forum, so it is a shame you didn't find us sooner. Not sure if you are also aware of Dawn Phenomenon (DP) or Foot on the Floor syndrome (FOTF) which is where your BG levels rise before you get breakfast as a result of the liver dumping glucose to give you energy for the day ahead. My liver is more sociable and waits until I get out of bed (FOTF), rather than starting the early hours (DP) so I inject some Fiasp to counter act it before I get out of bed. It usually takes 1.5-2 units to deal with it. I still have to wait 45 mins before breakfast with Fiasp but it was over an hour with Novo(not so)Rapid otherwise I spiked quite badly, so my breakfast bolus goes in at the same time before I get out of bed and then I have 3/4hr to potter on and have a coffee before I eat breakfast. Other times of the day it just takes 20 mins, but most people struggle with a bit of insulin resistance in the morning even without steroids.

Sorry to read that your diabetes support has not been great. Are you not under the care of a hospital clinic/team/consultant? Many GPs have little knowledge of Type 1 diabetes management and it is best to ask to be referred to clinic, particularly if you are having problems. The intensive education courses like DAFNE are fantastic so do push for that. Just spending 5 days with other Type 1diabetics is interesting and refreshing and a real eye opener as to how individual diabetes is. There will be a helpline number for the hospital clinic, so if your GP is not referring you, try using the helpline to see if you can circumvent them. The clinics tend to be really keen for people to be educated, so that they can keep themselves safer and improve their BG management.... they are so much more than just carb counting courses.

Anyway, I have wittered on far too much but hopefully you will find one or two snippets of useful info if you made it through to the end without falling asleep. 🙄

 

[Stubby]

Good to hear you have Libre. It really is a "game changer". Do be aware that it isn't 100% accurate though and you can get compression lows through the night if you lie on the sensor for any length of time, so always best to double check if you get a low alarm through the night with a finger prick. To be honest, you are supposed to check any low readings or high ones before you treat them as the Libre can be out by several mmols above and below range. I tend to do occasional checks when my levels are steady just to check the calibration and take any consistent discrepancy into account when I bolus etc.
The time in range function is a great feature and I find it much more helpful mentally in managing your diabetes than the premeal finger prick target ranges. I think the Time in Range/Target gives you much more achievable goals so it sets you up for success rather than feeling like you are failing if your pre meal readings aren't always in target. I treat my diabetes more like a long running computer game now with Libre and I am currently on a personal best of 96% TIR for the past 7 days and working hard for a possible 97, but knowing that at some point a spanner will drop into the works and I will drop into the 80s again but the goal is 70% so I am still winning even when I don't do quite so well.

Sorry to hear the steroids are causing you BG upheaval. It is common knowledge here on the forum, so it is a shame you didn't find us sooner. Not sure if you are also aware of Dawn Phenomenon (DP) or Foot on the Floor syndrome (FOTF) which is where your BG levels rise before you get breakfast as a result of the liver dumping glucose to give you energy for the day ahead. My liver is more sociable and waits until I get out of bed (FOTF), rather than starting the early hours (DP) so I inject some Fiasp to counter act it before I get out of bed. It usually takes 1.5-2 units to deal with it. I still have to wait 45 mins before breakfast with Fiasp but it was over an hour with Novo(not so)Rapid otherwise I spiked quite badly, so my breakfast bolus goes in at the same time before I get out of bed and then I have 3/4hr to potter on and have a coffee before I eat breakfast. Other times of the day it just takes 20 mins, but most people struggle with a bit of insulin resistance in the morning even without steroids.

Sorry to read that your diabetes support has not been great. Are you not under the care of a hospital clinic/team/consultant? Many GPs have little knowledge of Type 1 diabetes management and it is best to ask to be referred to clinic, particularly if you are having problems. The intensive education courses like DAFNE are fantastic so do push for that. Just spending 5 days with other Type 1diabetics is interesting and refreshing and a real eye opener as to how individual diabetes is. There will be a helpline number for the hospital clinic, so if your GP is not referring you, try using the helpline to see if you can circumvent them. The clinics tend to be really keen for people to be educated, so that they can keep themselves safer and improve their BG management.... they are so much more than just carb counting courses.

Anyway, I have wittered on far too much but hopefully you will find one or two snippets of useful info if you made it through to the end without falling asleep. 🙄

Thanks. That's actually very helpful. I have DP or FOTF but sometimes it doesn't happen at all and then other times it can spike quite high. for instance, yesterday I took 2 units of novorapid and it still shot up from 5.4 to 8.4 in the first hour after getting up. Today, 2 units again and perfectly stable even though I did exactly the same things. That's what is frustrating for me that I have to live with the fact that no two days will be the same for any number of reasons. But I am trying to see it as a challenge. I like the video game comparison . So I am going to try that, thanks for the idea.

 

[rebrascora]

If it is any consolation, my diabetes doesn't play by the rules very often either so I share your frustration. The Libre is brilliant for keeping tabs on it though!

 

[SB2015]

Hi @Stubby as you are finding out no one’s diabetes plays by the rules. All we can do is the best that we can to minimise the disruption that things cause, especially things like steroids. Whilst things can be a bit of a juggling act there are the general principles of dealing with DP, pre-bolusing and carb counting which you have clearly got your head round. Things will still wobble around but it gives us a good basis to work from. the DAFNE course is very good, not only for the info you but also for the chance to talk with others with T1.

I may have misunderstood, but am I right in thinking that you are in the care of your GP rather than the specialist team at the hospital? It might help you at this stage to ask for a referral to the hospital. It is not uncommon for those on injections to be cared for in primary care (GP) but the specialist teams draw on the experience of treating many more T1s . At our Practice there are only three of us With T1!!!! So the GPs don’t get to see many of us at all so lack the expertise.

It is great that you have got the Libre. So much more info than intermittent glucose tests, and it shows you the size of spikes and what is happening overnight. This enables us to make informed decisions.

This forum is great source of practical tips as you can tap into a vast store of experience with practical tips. Everyone manages in different ways but I find I learn so much from others, whether it be ‘I wouldn’t do that because … ‘ or that’s worth trying‘. Keep in touch and keep asking questions. No one will mind.

 

[TheClockworkDodo]

Hi Stubby and welcome to the forum 🙂

I was in my forties when I was diagnosed too, and the consultants were clueless about why I had diabetes when I had no family members with it ... but I have 3 other immune diseases and it's quite likely that steroids were the original cause of my immune system going haywire.

Thanks. That's actually very helpful. I have DP or FOTF but sometimes it doesn't happen at all and then other times it can spike quite high. for instance, yesterday I took 2 units of novorapid and it still shot up from 5.4 to 8.4 in the first hour after getting up. Today, 2 units again and perfectly stable even though I did exactly the same things. That's what is frustrating for me that I have to live with the fact that no two days will be the same for any number of reasons. But I am trying to see it as a challenge. I like the video game comparison . So I am going to try that, thanks for the idea.

That is my experience too! I will have a reading of 6 one day and the next day I'll do exactly the same thing and have a reading of 13. Or 3. Do you have a lot of hypos as well? Either I'm still in the honeymoon period, over 10 years after diagnosis, or my peculiar diabetes means my pancreas isn't ever going to quite stop working (I'm pretty sure it still puts out insulin from time to time, just to keep me on my toes). I'm aiming for no more than 1 hypo a day, but sometimes I have days when I have 3 or 4 hypos no matter what I do, even with the Libre.

I would definitely agree with @rebrascora and @SB2015 that it's worth asking to be referred to your hospital diabetes team for help rather than relying on your surgery - a hospital diabetes specialist nurse is much more likely to be knowledgeable about unusual diabetes than a GP or surgery nurse.

 

[trophywench]

Well there are still a lot of unanswered questions about diabetes - eg why some T1s still produce some insulin even 60 or 70 years after diagnosis. Not enough to rely on to be of any practical day to day use, but ...... Think about it - the world has ONLY been treating diabetes with injected exogenous insulin for 100 years even though the Ancient Greeks knew diabetes existed! (I avoid doing that very thing, when I can, cos it's a bit scary) So - the knowledge of 'what happens when and why' is a comparatively new science!

 

[TheClockworkDodo]

I'm sure in the long term they will discover it's a lot more complicated than "type 1" and "type 2" and so on - there are obviously different sub-groups, and it's daft when the NHS treats us as if we are all alike and then looks at us as if it's our fault when we don't all react to treatment in the same way.

 

[grovesy]

I'm sure in the long term they will discover it's a lot more complicated than "type 1" and "type 2" and so on - there are obviously different sub-groups, and it's daft when the NHS treats us as if we are all alike and then looks at us as if it's our fault when we don't all react to treatment in the same way.

The research reported on a couple of years ago, was saying they had identified over 50 differnt types.

 

[TheClockworkDodo]

Ooh, I didn't know that - thank you, @grovesy - I only knew of about 7 and it's obvious there are a lot more than that.