Hi, 22 years as type 1 and something has changed?

[chrisbug]

Hi,
So I'm new here, new to sharing about my diabetes control! I'm 48 yo and had type 1 for 22 years.
My control has always been ok, my HbA1c in 2019 was 44 and I was told to 'loosen my grip on my BS'. No other advice or education given.
I have never needed 3rd party medical assistance with a hypo but after a hypo a few weeks back that left me terrified and knocked all confidence out of me.
I increased my (finger prick) testing upto 20 times a day, and record all my results (plus carbs etc.)
Which has shown that I am now needing considerably less insulin than previously!
Any physical exertion will create a hypo fairly soon. There seems to be zero consistency. I'm on Humalog and
Humalin I.
Life is on hold!
My GP has referred me to the diabetes team at the hospital and I'm still waiting for some form of communication.
Has anyone else experienced anything similar?

 

[ert]

Every six months, I've experienced a sudden, unexplained drop in BS overnight, for no reason within 5 minutes, and it's not picked up on an alarm as MM does moving averages. I wake up sweating profusely. I normally can catch hypos (before they go below 3.5) as the blood sugars changes are very slow. I just put it down to one of the problems of taking insulin. Maybe my body started producing insulin? Or I had some injected insulin in fat, which wasn't released until hours later? I'm on Levemir and Fiasp.

I manage exercise by only exercising on long-acting. I don't run until 3 to 4 hours after taking short-acting. I take less basal overnight on days doing a lot exercise. I'm on a split dose Levemir.

 

[hh1]

Hi Chris, I was diagnosed when I was 31. Allowing for honeymoon etc etc my insulin needs were lower then than when I was in my forties or fifties (hard to remember!) but have decreased a bit this summer rising agin now. I've put that down to the very hot weather plus using injection sites I've never used before. I have a libre on prescription which was revolutionary for me; with your current level of testing I think you defo need one and would qualify.

I have no explanation for your consistently lower insulin needs unless you're using brand new sites or perhaps storing your insulin more effectively? And I'm assuming you haven't changed insulin. In your shoes I'd ring the hospital diabetes team and ask if they can see you quickly as it sounds as though you feel you're living on a tightrope at the moment. Good luck and let us know how you get on.

 

[chrisbug]

Many thanks for all of your replies.
It's really frustrating not knowing why this has suddenly begun.
The nurse from the hospital mentioned that the Humalin I is probably not suited to my needs.
I had jacket potato and beans last night and I would have taken 12-14 units of Humalog in the past. Last night I took 7 units, 2 hours later I'm treating a hypo!
And this is happening a lot of the time.
I have found that I'm relearning everything I thought I knew.

Some days are good! As long as I do nothing too strenuous, and continue to eat the same sort of foods!

I'm reluctant to continue getting up at 02:30 to test my BS if I'm on the wrong long acting insulin! Especially as the results are all over the place.

All I want is to go over my records with a specialist, for them to answer my questions and go over my recent blood test results. I've been told that I'm a good candidate for freestyle libre, so hopefully that will improve things.

My wife has been really amazing, and I'm now less ashamed or embarrassed about a high or low blood sugar thanks to her support and encouragement.
My aim is to be back in control of "my diabetes".

Thanks again,
It's good to share.

 

[Daibell]

Hi. Humulin is not that commonly used. I think you will find Levemir is the first choice mentioned by NICE and is know to be fairly predictable. I'm not saying it will be better but is now one of the most commonly prescribed long-acting insulins?

 

[chrisbug]

Hi, thanks for your comment.
On the phone I'm pretty sure the nurse suggested that Tresiba would be more suitable.
I started on Insulatard, I guess during the honeymoon period.
Then was put on Humalog and Humalin I, so quite a long time I've been on these.
I try to inject humalog in the abdomen and rotate the sites, tricky!
I wear overalls at work, so it's easier to go for abdomen.
Humalin in the buttocks at bed time.
During the summer wearing shorts and t-shirts it's easier to inject in thighs and upper arms.
Although I've misjudged a recent thigh injection into muscle and that insulin moved very fast.

 

[chrisbug]

So, I've had a meeting with the diabetes nurse at the hospital. (I had been previously under the care of my surgery nurse).
The nurse was fantastic, she went through my blood glucose test results (upto 20x a day finger pricks), my current regime and generally reassured me.
I am now on the list to get a freestyle libre, and as soon as that starts to shed some light on my nightime blood sugars, adjustments or a change in long acting insulin can begin.
I'm now feeling much more positive after a period of despair and anxiety.

I'll probably post a question about most suitable android phone to use with freestyle libre (and eventually miao miao?)
as my current phone is not compatible.
Unless these questions have been dealt with previously?

 

[NicoleC1971]

So, I've had a meeting with the diabetes nurse at the hospital. (I had been previously under the care of my surgery nurse).
The nurse was fantastic, she went through my blood glucose test results (upto 20x a day finger pricks), my current regime and generally reassured me.
I am now on the list to get a freestyle libre, and as soon as that starts to shed some light on my nightime blood sugars, adjustments or a change in long acting insulin can begin.
I'm now feeling much more positive after a period of despair and anxiety.

I'll probably post a question about most suitable android phone to use with freestyle libre (and eventually miao miao?)
as my current phone is not compatible.
Unless these questions have been dealt with previously?

Good luck with getting your libre as your fingers must be pretty sore by now!
A phone with NEC connectivity is what you need. Mine's a Samsung Galaxy A70 but pretty much any new ish smart phone should work.
As for dropping insulin needs, in a way that is good since too much insulin is generally a bad thing even for type 1s.
Your consistently lower needs indicate you've become more insulin sensitive and that can be due to less body fat, resolution of an underlying infection, coming off steroid drugs.
Be interesting to calculate your current carbs to insulin ratio for your humalog/tresiba dosing.
1u for 10g carbs is thought to be normal and when I heard the dose for your jacket spud and beans it sounded like your old 'normal' was higher than I'd expect (unless it was a massive portion!).
Glad to hear you've had some specialist help and I hope your cconfidence returns soon.

 

[hh1]

So, I've had a meeting with the diabetes nurse at the hospital. (I had been previously under the care of my surgery nurse).
The nurse was fantastic, she went through my blood glucose test results (upto 20x a day finger pricks), my current regime and generally reassured me.
I am now on the list to get a freestyle libre, and as soon as that starts to shed some light on my nightime blood sugars, adjustments or a change in long acting insulin can begin.
I'm now feeling much more positive after a period of despair and anxiety.

I'll probably post a question about most suitable android phone to use with freestyle libre (and eventually miao miao?)
as my current phone is not compatible.
Unless these questions have been dealt with previously?

Glad to hear you're now on the list for a Libre, though I'm not sure why you're not getting one straight away. I don't necessarily think your Android has to be that new; I think @Jaylee's isn't and he also use miao miao I think. Keep us posted on updates and fingers crossed for you.

 

[chrisbug]

Good luck with getting your libre as your fingers must be pretty sore by now!
A phone with NEC connectivity is what you need. Mine's a Samsung Galaxy A70 but pretty much any new ish smart phone should work.
As for dropping insulin needs, in a way that is good since too much insulin is generally a bad thing even for type 1s.
Your consistently lower needs indicate you've become more insulin sensitive and that can be due to less body fat, resolution of an underlying infection, coming off steroid drugs.
Be interesting to calculate your current carbs to insulin ratio for your humalog/tresiba dosing.
1u for 10g carbs is thought to be normal and when I heard the dose for your jacket spud and beans it sounded like your old 'normal' was higher than I'd expect (unless it was a massive portion!).
Glad to hear you've had some specialist help and I hope your cconfidence returns soon.

Hi,
Many years ago I was told to improve my HBA1C as it was mid 50's , a couple of years ago told to loosen my grip on my HbA1c as it was nearer to early 40's.
I guess I found it easier to take more insulin and run my b/s closer to 4 mmol/L. And this has probably been a huge part of my problem, complacency.
Also I was instructed to take my long acting insulin at bed time, I never questioned such decisions and as things were just ticking along okay, I didn't challenge it.

Just looking at my comprehensive blood sugar/carb records that I started 1 month ago I can definitely see a pattern that has caused me grief.
Like seeing a rise in b/s post meal and not allowing enough time before taking correction doses.
But I'm no longer just going through the motions, I'm learning masses just by recording b/s readings, time, doses etc. So under the care of the hospital now, being part of this forum, it's starting to look a lot brighter!