Type 1 Rather desperate - any help appreciated

Aloha1816

Member
Messages
10
Thanks for clicking on my post first of all.

Hello to all of you,

I was wondering if anyone is experiencing autonomic neuropathy symptoms like irregular bowel habits, bladder problems (started self catherization recently) , feet/Hand quickly going numb when sitting down etc., and how you are managing it?

I got officially diagnosed a few months ago via an urodynamics test after I kept insisting on it as doctors just could not/still cannot believe it that it is possible with my hba1c to get it.

I have been T1 for soon 15 ys (age 29 nowadays) and my Hba1c has been around the 6,5 mark for the first 10 and for the last 5 around the 6 mark with the last 5.8.
During this time I was checking my levels 8-12 times a day. 6 months ago i got my first pump and for last 12 with libre. I started getting stomach problems 4 ys ago followed by bladder problems around 2 years ago.

Admittedly I always had a bit of a too tight control with lows 2,3 times a day and highs up to 14. I always hated It when my sugars went above 8 therefore over corrected quite a bit.
Through the libre I could clearly see that for lunch and dinner, after around 2 1/2 hs after food intake, I almost have to inject same insulin amount as originally injected to avoid another spike which for sure cost me 1000s of highs.
E.g inject 6 units at 2 pm eat at 2 30, 72 cabs, at 5 pm have a nice 6 and if I do not inject any insulin will go up to 12 or more within an hour with sugars peaking at around 16-18.
Also could see what impact a mackerel salad or so has, worst pizza, where I get like spikes after 2 1/2 and 5 hs.

Thanks for your suggestions as it is having quite an effect on life quality and therefore appreciate all your input.

Cheers,
Raphi
 

tim2000s

Expert
Retired Moderator
Messages
8,936
Type of diabetes
Type 1
Treatment type
Other
Hi @Aloha1816 - I'll bump your post up, as I'm afraid that I don't have any experience of what you describe. I hope someone can help.
 

Aloha1816

Member
Messages
10
Sorry can anybody help here with their experiences about auto-neuropathy?

Fast forward to 2025 - my symptoms have deteriorated over the last few years and nowadays have my sugar almost 100% between 3.5 & 6.5 and gastro & bladder symptoms are pretty ****. Any advice?
 

Tony337

Well-Known Member
Messages
872
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Not being on holiday....
Good morning @Aloha1816

I'm sorry to hear of your woes.

Type 1 of 50 years here aged 56.
I have tight control which got better once i got the libre around 7 years ago ..last hba1c was 39 or 5.7.

I started with bad guts around 15 years ago and had a camera both ends and was diagnozed with coeliacs disease.
Followed a gf diet but the bad guts persisted.
Then had a sehcat scan and was diagnozed with bile acid malabsorption.BAM

I still suffer with it but use loperamide to manage it.

I don't suffer with my bladder.

I hope this helps you and do feel free to ask any further questions although my GP pointed out recently patients can now talk freely about mental health but still don't like talking about bowel movements!

Bring on the bristol stool scale thats what i say.....lol

I wish you well

Tony