Type 1 four months in.

[Mattiboy]

Hi everyone,
I was diagnosed with type 1 on Christmas Eve 2021 at the age of 46. I was quite ill at the point I walked into the doctors surgery. Numb feet, marks in my eyes that wouldn't go away, terrible vision, weight loss and feeling absolutely exhausted.
Doc took blood and said, "no news is good news with blood" They called me first thing in the morning! Then it all started, trips to the hospital and doctors and I was injecting from the following day.
It was so much to take in as I'm sure you all know and have experienced.
Since then I have really struggled, mainly by myself with adjusting to living with type 1. I have feelings of being isolated and controlled by diabetes, that high sugar levels are guilt making me inject too much and hypo. I'm having 2 to 4 hypo's a day most days some quite deep in low 2's. I come home from work exhausted after a few of these.
I don't know anybody who has type 1 so can't really share any experiences with them.
So that's how I find myself here. Has anyone else gone through these feelings? Is it just a stage I have to live through before I become a pro? Or am I doing it wrong?!

 

[Jacen017]

Hi Mattiboy,

I was also diagnosed with T1 on Christmas Eve and have been going through those same feelings that you mentioned above and have only just started to feel like I'm starting to adjust mentally in the last week or so.

This forum was a great lifeline to myself, just reading some of the other posts helped me to not feel so alone and when I ask any questions everyone is very supportive and helpful.

My DSN also put me in touch with the Clinical Psychology team at the hospital. Whilst not directly helpful, it was helpful to just have someone to talk to who was removed from the situation - I was struggling to speak to family about any problems I was going through as they would worry more and then I would feel very guilty and a burden.

Hang in there, it does start to get better!

 

[Ian68]

Hi Mattiboy welcome to the forum. It’s perfectly normal to freak out when first being diagnosed. I know I did which was also in December.

I am prone to over compensate when low then be ashamed of the resulting high.

You will soon know lots of other T1’s on here who are a very friendly and helpful.

 

[Mattiboy]

@Jacen017 thanks for replying. Glad it's not just me feeling like this then. What a Christmas gift we both got!!
I'll have a look through the forum then and see what goes on here, thanks for your help!

 

[Mattiboy]

Hi Mattiboy welcome to the forum. It’s perfectly normal to freak out when first being diagnosed. I know I did which was also in December.

I am prone to over compensate when low then be ashamed of the resulting high.

You will soon know lots of other T1’s on here who are a very friendly and helpful.

Thanks for your reply @Ian68 I was also over compensating for lows and having massive spikes. It's only this week, where I have managed to remember not to panic and have just what I need.
I'm so glad to have found this forum!

 

[Inka]

Very normal @Mattiboy I remember being angry, scared, upset and totally consumed by the Type 1. It does gradually get easier. I found I felt a bit better around 6 months, better again around 12 months, and pretty much normal and accepting around 2 years. Be kind to yourself and give yourself time to mentally process it.

Those hypos will be making you feel worse. Quite apart from the physical effects, they also affect your mood. If you can give a few examples of your highs, your corrections and your hypo pattern, we can make suggestions eg when do you spike, how long after spotting the spike do you correct, etc, etc.

It’s best to correct infrequently in the early days because you’ll still be making some of your own insulin, and this will come in late and contribute to the hypos.

 

[Jacen017]

@Jacen017 thanks for replying. Glad it's not just me feeling like this then. What a Christmas gift we both got!!
I'll have a look through the forum then and see what goes on here, thanks for your help!

It's the gift that keeps on giving🙄

I've never been more terrified as I was when Christmas Dinner was put in front of me

I also had problems with overcompensating for lows and highs, that stopped after some experimenting with my Basal Insulin to get the right dose for me.

Now I only have a couple of hypos a month which I put down to my pancreas sometimes waking up a bit more.

I always imagine it being really pleased with itself when I'm scoffing Jelly Babies being like "LOL! I helped!"

Ask anything that's on your mind or just have a rant if you need.

 

[Jacen017]

It’s best to correct infrequently in the early days because you’ll still be making some of your own insulin, and this will come in late and contribute to the hypos.

This is exactly what I meant, worded much better by Inka 😉

 

[Mattiboy]

Very normal @Mattiboy I remember being angry, scared, upset and totally consumed by the Type 1. It does gradually get easier. I found I felt a bit better around 6 months, better again around 12 months, and pretty much normal and accepting around 2 years. Be kind to yourself and give yourself time to mentally process it.

Those hypos will be making you feel worse. Quite apart from the physical effects, they also affect your mood. If you can give a few examples of your highs, your corrections and your hypo pattern, we can make suggestions eg when do you spike, how long after spotting the spike do you correct, etc, etc.

It’s best to correct infrequently in the early days because you’ll still be making some of your own insulin, and this will come in late and contribute to the hypos.

Thank you for taking the time to respond. It's encouraging to read how your feelings changed over time. I think I will feel better in time but only as I start to master this condition.
I am now very lucky to have Libre, which has changed the way I can monitor my levels. I have been using it for about a month and that has lead to me being able to dose before eating to combat my highs. If I'm low before eating I inject just before eating and if I'm high, I might inject 15 to 20 minutes before eating to give my dose time to kick in. Don't know if this is good practice or not, but it seems to help me?
I tend to eat breakfast at 9am rise to 13mmol then drop quickly to a low by about 10:30. Same happens at lunch time, but my evening meal tends to stop me from having the low afterwards. It's only in the last three weeks where I have been making adjustments after eating. If I'm high and my dose with my meal didn't bring me down I will dose a small amount again to come back down. During the night I am generally fine and within range all night.

 

[Mattiboy]

It's the gift that keeps on giving🙄

I've never been more terrified as I was when Christmas Dinner was put in front of me

I also had problems with overcompensating for lows and highs, that stopped after some experimenting with my Basal Insulin to get the right dose for me.

Now I only have a couple of hypos a month which I put down to my pancreas sometimes waking up a bit more.

I always imagine it being really pleased with itself when I'm scoffing Jelly Babies being like "LOL! I helped!"

Ask anything that's on your mind or just have a rant if you need.

It's really interesting that you only have a couple of hypos a month. I WILL get to that point eventually, hopefully soon. This Libre system is gonna help get me there I think. It's so good to be able to watch what's happening as it happens and what causes highs and lows...

 

[Jacen017]

It's really interesting that you only have a couple of hypos a month. I WILL get to that point eventually, hopefully soon. This Libre system is gonna help get me there I think. It's so good to be able to watch what's happening as it happens and what causes highs and lows...

For sure!

I still note down exactly what I'm eating in addition to the carbs and insulin on the libre.

I'll also do a scan and a note if I'm about to exercise etc so when I look back on the graph it helps me to figure out what's happened and allows me to adjust if I need to.

 

[nonethewiser]

It's really interesting that you only have a couple of hypos a month. I WILL get to that point eventually, hopefully soon. This Libre system is gonna help get me there I think. It's so good to be able to watch what's happening as it happens and what causes highs and lows...

Set low alarm bit higher to avoid hypos, have mine set at 4.8 but always check which direction arrow is pointing, that plus taking into account previous bolus dose.

 

[Mattiboy]

For sure!

I still note down exactly what I'm eating in addition to the carbs and insulin on the libre.

I'll also do a scan and a note if I'm about to exercise etc so when I look back on the graph it helps me to figure out what's happened and allows me to adjust if I need to.

Nice! I'm going to start doing that from now on then. I guess the health care team can see those notes too if they are connected to your app??
I connected my app to my care team. They didn't really tell me to take notes tho, just showed me that you could.
Thanks for all your and everyone else's help, it's much appreciated!!

 

[nonethewiser]

Nice! I'm going to start doing that from now on then. I guess the health care team can see those notes too if they are connected to your app??
I connected my app to my care team. They didn't really tell me to take notes tho, just showed me that you could.
Thanks for all your and everyone else's help, it's much appreciated!!

Yes share data with clinic, so even if not attending in person they can see libre data & discuss over phone if need be. You will get there mate.

 

[Mattiboy]

Set low alarm bit higher to avoid hypos, have mine set at 4.8 but always check which direction arrow is pointing, that plus taking into account previous bolus dose.

Thanks for this. My setting is at 3.9 currently. I turned the high alarm off two days ago as it was too annoying.
I'll have a play with the low setting today and find a good spot for me over the next week. This forum is so good. Thank you people!

 

[Mattiboy]

Yes share data with clinic, so even if not attending in person they can see libre data & discuss over phone if need be. You will get there mate.

And just as I was typing the alarm went off. 3.8

 

[nonethewiser]

Thanks for this. My setting is at 3.9 currently. I turned the high alarm off two days ago as it was too annoying.
I'll have a play with the low setting today and find a good spot for me over the next week. This forum is so good. Thank you people!

Good your finding forum useful. Having set higher gives you time to react as libre is wee bit behind bg reading, so in my opinion 3.9 is to low for alarm, others might disagree but it's what I do & have very few hypos nowadays.

 

[Proud to be erratic]

Hello @Mattiboy ,
Welcome to the forum and the club no one really wants to be part of.

You've already stumbled into several aspects of diabetes that will regularly reappear. One is that D affects us all quite differently; you have lots of hypos someone else doesn't. Another is that your insulin dependency is permanent and so this is a long haul journey, not a sprint; there will be frequent occasions when something goes awry and the best solution is to learn what might be "learnable" then move on and make tomorrow a fresh start. Also that at this stage D is complicated, confusing and contradictory; I used to find it frightening, but as I've learnt more about myself and about D management that knowledge has helped dispel the fear.

2 books I (and others) have found very helpful are: "Think Like a Pancreas", by Gary Scheiner; and "T1 Diabetes in children, adolescents and young adults" by Dr Ragnar Hanas. Despite the title for the 2nd book, its very informative in general and fine for adults as well. Each book is (I think) very readable; and each is rather different in content and style.

Glad you've got the Libre it is really helpful in knowing what is going on with your BG. But there are limitations with Libre and, like all technology really, it is important to be aware of those limitations. The main thing probably for you at this stage is to not react too immediately to what you are seeing. You can get a reading that initially seems urgent (high or low) and 20 seconds later you 'might' get a reading that contradicts what you've just seen. If Libre tells you that you are hypo, always finger prick to confirm that, then respond accordingly. Because Libre is reading interstitial BG it lags actual BG; so it might be telling you that you were hypo (but already recovering) and you just need to monitor with perhaps only a very modest response. I have the low alarm set at 5.6 and use that to forewarn me that I'm dropping; then I respond accordingly with slower carbs, such as a small biscuit - keeping my jelly babies for when I am close to 4 and so need a faster response. The trick is to head off the hypos before they become a hypo.

There are a huge no of factors that can affect your BG. Two that I think are important, but not necessarily immediately obvious, are stress and staying well hydrated. Stress in all its forms (emotional, medical or traditional worries of daily life) triggers adrenaline and cortisol hormones that cause a release of glucose from various stores in your body - with consequent elevated BG. Staying fully hydrated helps dilute and flush out excess glucose.

The overlying message here is that managing and gaining control of your D does improve. Lots of experience within this forum. Ask whatever you like; no question is stupid, we've all been in your place. Good luck.

 

[Mattiboy]

Thank you Roland. I am very quickly realising that we really are all different. Reading some of the responses here has opened my eyes to how diabetes affects other people differently to me.
I tend to rise and drop extremely quickly. I can go from 12 to 4mmol in 20 minutes making it really hard to control.
Before my diagnosis, for years, I was super fit, cycling 40 miles a day commuteing and between 60 to 130 miles at weekends. I stopped all of this when I was diagnosed as it scared the life out of me that something will happen when I'm out miles from home. When I get control of this my target is to start riding again and regain my fitness. Just very light exercise at the moment...

 

[Inka]

Thank you for taking the time to respond. It's encouraging to read how your feelings changed over time. I think I will feel better in time but only as I start to master this condition.
I am now very lucky to have Libre, which has changed the way I can monitor my levels. I have been using it for about a month and that has lead to me being able to dose before eating to combat my highs. If I'm low before eating I inject just before eating and if I'm high, I might inject 15 to 20 minutes before eating to give my dose time to kick in. Don't know if this is good practice or not, but it seems to help me?
I tend to eat breakfast at 9am rise to 13mmol then drop quickly to a low by about 10:30. Same happens at lunch time, but my evening meal tends to stop me from having the low afterwards. It's only in the last three weeks where I have been making adjustments after eating. If I'm high and my dose with my meal didn't bring me down I will dose a small amount again to come back down. During the night I am generally fine and within range all night.

You could try reducing your mealtime bolus (injection) and having it slightly earlier before you eat. That worked for me. I moved my breakfast bolus more in advance of my breakfast and was able to then reduce my bolus. Less spike, reduced risk of going low later.

If you want to experiment with having your bolus earlier, move it gradually 5 minutes at a time. Keep it at that time for 3 days, then move another 5 mins if necessary. Always err on the side of caution.

Personally i’d be extremely wary about correcting after meals. It’s more than likely you’ll come down anyway. The Type 1 target is to be back in range by the next meal. That target is particularly sensible for the recently diagnosed. If you use corrections too much or when not really needed, you get on to the most horrible rollercoaster of blood glucose, and it’s unpleasant and makes you feel rough. If you spike to 13 but come down by the next meal, then I’d not correct. Try the bolus moving, as detailed above, or just leave things.