Hyperinsulism

How has the heatwave affected your blood glucose?

  • High bloods

    Votes: 0 0.0%

  • Low bloods

    Votes: 4 57.1%

  • Stayed the same

    Votes: 3 42.9%
  • Total voters
    7
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Faith_exx

Active Member
Relationship to Diabetes
Type 3c
Hi everyone,
I’m new to posting to this group and I’ve not been in a forum before. I’m just looking for someone who has the same condition as me.
I have hyperinsulism and type one diabetes. I have 5% of my pancreas left which still overproduces. I still have to test, carb count etc just have the added issue that my pancreas likes to make me hypo sometimes by giving me a bit extra. If you have the same condition please let me know, thank you for reading.
 
Hello @Faith_exx and welcome to the forum. I've heard of the condition but never come across anyone with it before.

Can you explain to everyone how you manage your diabetes as it sounds like a nightmare :(
 
Pumper_Sue said:
Hello @Faith_exx and welcome to the forum. I've heard of the condition but never come across anyone with it before.

Can you explain to everyone how you manage your diabetes as it sounds like a nightmare :(
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I manage like a normal diabetic really, i carb count, test (at the moment I have libre 2 sensor), do insulin before meals etc. I have a Medtronic 670G pump, My basal rate is super low for my age along with my carb ratio. Overall I just get less insulin than what most people with type one would get I only know as my diabetic nurse told me. I’ve been really struggling with a lot of hypos at the moment though and wanted to see if anyone had any tips to help me manage them as it’s getting quite overwhelming☺️
 
I would suspect your only redress is to make very good use of your temp basal rates and perhaps instead of treating a hypo when you have reached hypo, treat at 5 so you don't go lower if you see what I mean.
 
Have you ever discussed a hybrid closed loop with your clinic? i think this would do away with basal rates and adjust insulin based on the readings from a cgm Which would g help with hypos
 
You say you have been experiencing more hypos recently. How recently?
I ask because the heat wave is causing havoc for some of us. I am definitely seeing more lows and faster acting insulin. I wondered if this is making your hyperinsulinism worse.
I am not sure I can provide any suggestions beyond hoping the heatwave ends soon. It is forecast to be cooler from tomorrow.
 
Saoirse said:
Have you ever discussed a hybrid closed loop with your clinic? i think this would do away with basal rates and adjust insulin based on the readings from a cgm Which would g help with hypos
Click to expand...
I have tried the Medtronic ones that connect to my 670G but I didn’t get on with them at all. I’m going to speak about it to my diabetic team when I get in to see them about it to see if there’s been any developments though. Thank you
 
Inka said:
Apologies if this is a stupid question, but would having the remaining bit of pancreas removed help, or just cause worse problems? Hyperinsulinism sounds very difficult. I’m sorry I can’t suggest anything to help, but I’ve done a Search for you so you can look at threads on the forum that mention it:

https://forum.diabetes.org.uk/boards/search/146013/?q=Hyperinsulinism&o=date

.
Click to expand...
Inka said:
Apologies if this is a stupid question, but would having the remaining bit of pancreas removed help, or just cause worse problems? Hyperinsulinism sounds very difficult. I’m sorry I can’t suggest anything to help, but I’ve done a Search for you so you can look at threads on the forum that mention it:

https://forum.diabetes.org.uk/boards/search/146013/?q=Hyperinsulinism&o=date

.
Click to expand...
Not a stupid question at all. I honestly don’t know and have thought about it a lot in my time but it’s never been something the hospital have ever suggested to me or spoken about. Thank you for taking the time out your day to some research for me and reply I really appreciate it. It is hard at times but nothing more difficult than anyone else here deals with ☺️
 
helli said:
You say you have been experiencing more hypos recently. How recently?
I ask because the heat wave is causing havoc for some of us. I am definitely seeing more lows and faster acting insulin. I wondered if this is making your hyperinsulinism worse.
I am not sure I can provide any suggestions beyond hoping the heatwave ends soon. It is forecast to be cooler from tomorrow.
Click to expand...
Before it was about once every 2 weeks but I’m going multiple times a day. However saying that I was only testing once maybe twice a day so now I’m on the libre 2 I’m testing so much more. I have heard that the heat is affecting people Im just not sure if it’s heat or if I am normally dropping this much without realising. Thank you for the bit of advice you’ve been able to give me
 
Pumper_Sue said:
I would suspect your only redress is to make very good use of your temp basal rates and perhaps instead of treating a hypo when you have reached hypo, treat at 5 so you don't go lower if you see what I mean.
Click to expand...
I totally get what your saying. I’ve got a temp basal on at the moment. Thank you for your reply
 
Faith_exx said:
Before it was about once every 2 weeks but I’m going multiple times a day. However saying that I was only testing once maybe twice a day so now I’m on the libre 2 I’m testing so much more. I have heard that the heat is affecting people Im just not sure if it’s heat or if I am normally dropping this much without realising. Thank you for the bit of advice you’ve been able to give me
Click to expand...
How often do you basal test? I'm like you and go through stages of running low so either turn my pump off or eat until the cows come home.
Once I start to run low I just do a basal test and adjust things as needed, then wait until the numbers go up so increase the basal again.

My Dexcom alarms at 5 so I treat then so I don't end up hypo to often.
 
Pumper_Sue said:
How often do you basal test? I'm like you and go through stages of running low so either turn my pump off or eat until the cows come home.
Once I start to run low I just do a basal test and adjust things as needed, then wait until the numbers go up so increase the basal again.

My Dexcom alarms at 5 so I treat then so I don't end up hypo to often.
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What do you mean by basal test? I’ve literally never heard of that term before. I normally just eat whenever I want and either not do carbs or a lot of suspending. But being low all the time just makes me feel sick so it’s a catch 22 I don’t want to eat because I feel sick but then I can’t come up unless I do. So I’m sure I’ve been a pain for my partner at the moment.
 
Faith_exx said:
What do you mean by basal test? I’ve literally never heard of that term before. I normally just eat whenever I want and either not do carbs or a lot of suspending. But being low all the time just makes me feel sick so it’s a catch 22 I don’t want to eat because I feel sick but then I can’t come up unless I do. So I’m sure I’ve been a pain for my partner at the moment.
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pop into the pump forum and read the sticky at the top of the page it explains how to do a basal test 🙂
 
I’ve known Jess for several years and have met her (and her mum who used to post here as @Adrienne many years ago).

Jess used to post on a blog here which may have some useful / interesting content for you

pancreasless.wordpress.com

Where I Am Now

This page is all about what current diagnoses I have, only including chronic medical conditions. Any acute conditions I have ever had such as sepsis, Cholangitis, blood clots etc are not included. …
pancreasless.wordpress.com pancreasless.wordpress.com
 
Hi and welcome.

I am curious as to how they diagnose hyperinsulinism and quantify it to 5% of over production. Or have you had surgery to remove most of your pancreas but you still have about 5% left which would make you Type 3c of course rather than Type 1.
Does this condition mean that you are basically in a permanent state of honeymoon period? That would be a bummer! 🙄

As regards hypos I average just over 1 a day according to Libre but it exaggerates 😡. Libre usually reads 1mmol lower than BG for me and a bad sensor can be up to 2mmols lower, so I don't worry to much about the number of hypos it reports and I double check most of them, unless it is the middle of the night and I know it isn't a compression low from lying on the sensor. I probably still average about 3 minor hypos a week. That said in the past week when I have been taking a break from Libre, the excessive heat has caused me to have multiple proper hypos almost every day despite repeatedly reducing my basal insulin day on day and using less bolus. I was down -9 units from my usual Levemir dose this morning and thankfully I have stayed out for the red today but levels have started to increased on an evening, so my night time dose is now needing increasing and brought forward. It's a constant challenge tweaking my basal doses but I love Levemir for it's flexibility in allowing me to do that.
I have probably had close to 15 hypos in the last week due to the heat and it making me much more sensitive to insulin.
 
everydayupsanddowns said:
I’ve known Jess for several years and have met her (and her mum who used to post here as @Adrienne many years ago).

Jess used to post on a blog here which may have some useful / interesting content for you

pancreasless.wordpress.com

Where I Am Now

This page is all about what current diagnoses I have, only including chronic medical conditions. Any acute conditions I have ever had such as sepsis, Cholangitis, blood clots etc are not included. …
pancreasless.wordpress.com pancreasless.wordpress.com
Click to expand...
How odd I was thinking of Adrienne the other day and wondering how she and her lovely daughter were.
 
Pumper_Sue said:
How odd I was thinking of Adrienne the other day and wondering how she and her lovely daughter were.
Click to expand...

Jess is now studying medicine I think. There was a thing I was invited to in September where we may have seen each other again, but unfortunately it clashed with a prior engagement so I couldn’t go.
 
everydayupsanddowns said:
Jess is now studying medicine I think. There was a thing I was invited to in September where we may have seen each other again, but unfortunately it clashed with a prior engagement so I couldn’t go.
Click to expand...
Wow that is fantastic news well done Jess.
 
Interestily the last heatwave I was have daily hypos depiste what I did to try to avoid. This one I have my normal 1 or 2 week.
 
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