Thank you for the information I really appreciate it
My pancreas produced too much insulin when I was born and I died many times. I had a pancreatectomy to remove 95%. I’ve not heard of the term “honeymoon period” what does that mean? When I’m low I do sometimes check with my bg meter to double check. I do think the heat may have something to do with it however I’ve had lows today after it cooling down- I wasn’t aware your insulin sensitivity could even alter.
I’m pretty sure I knew her as I recognise her mums name also. I used to go to GOSH with her I’m pretty sure. Thank you for the infoI’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
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
Yes! I have exactly the same problem. I’ll do the insulin I’m meant to with food, corrects etc and always seem to drop too much at the moment. I was diagnosed with type one when I was 6 but I’ve heard from many people I might not actually have type one.
The last heatwave I was okay- but this one I’m having one every time I do insulin.
I’ve been using a pump since I was 12 or 13 (2014)and i used injections from 6 years old(2008). I’ve been shown how to bolus, put on a temp basal, I know how to get to things eg carb ratio but I have no idea how to change it the correct way. That’s something my diabetic nurse or family would do but I don’t have my family close to me and I’m waiting to get into a hospital so I don’t have anyone to help me haha.
The "honeymoon period" is what happens in the early part of a Type 1 diagnosis, when some but not all of the Beta cells which produce insulin have been killed off by the immune system. The remaining insulin producing cells havce become overwhelmed by the constant need to make up the deficit in insulin and struggle to cope but once you start injecting insulin and take a bit of the strain off them, they start to recover a bit sometimes nicely rounding off the edges of your diabetes management and making it easier but for others it is very much in fits and starts which can catch you unawares because you calculate what you need and then your body chips in with a bit of it's own when you don't expect it and causes a hypo.
That is so much useful information. Thank you so much, helps me understand a lot more what my body is doing. Yes I take creon and have done since a baby. I’m definitely type 3c then, I don’t know why the hospital never corrected me and told me. I do always try to finger prick if I’m low- my libre is super accurate though every fifer prick test I’ve done has matched exactly what my sensor has said. Again thank you so much
The reason was mainly that my family sheltered me a lot and didn’t want me to do it myself so I never learnt and then left home in 2020 and I haven’t seen a diabetic team or spoken to them since march 2020. So I didn’t have the opportunity to learn. I’ve recently moved which is why I’m waiting to get an appointment with a diabetic team so I’m hoping they can teach me and my partner how to use it to it’s full potential. I’ve tried the Medtronic sensor that can adjust the insulin settings depending on my bloods but I didn’t like them at all. I ended up pricking more than I was previously- and it was constantly alarming.I would suggest you do the basic basal test over a few days so you can see exactly what your blood sugars are doing then any adjustments to your basal can be made 2 hours before you have started to drop.
Is there any reason why you haven't learnt to adjust your pump settings yourself? If you haven't got the manual to change the settings then download it and follow exactly what it says.
I do think most of your problems are not using your pump correctly
If you can learn how to use it correctly there are so many options available to you as in either Dexcom or Medtronic sensors to go with a pump that adjusts your basal automatically depending on sensor readings.
There is also a setting on your pump which allows the pump to stop automatically if no buttons have been pressed for X amount of hours. Have a look at your settings to see what it is set at so you have more reassurance as well.
Ah ok, hopefully having a manual https://www.medtronicdiabetes.com/download-library/minimed-670g-system will help you to start having a better life.
Brilliant thank you again- I’ll start a forum and then hopefully I’ll get some more pointers. I know how to change it but I don’t know by how much or if I need to go up or down haha. You’ve all been so lovely and it’s nice to get info from people that know what it’s like.
If you have too low in a time slot then you need to reduce your basal if too high then increase it. A very small amount will make one heck of a difference. If not enough then lower or higher it a bit more a couple of days later.
I think some of my low bloods have been down to the heat, but I wouldn’t have known as I’ve NEVER tested my bloods this much. I would test 2 times a day max. I went through a phase where I didn’t bother. However now I’m keeping an eye and testing all the time so for the next few days I’m keeping an extra eye to see if it needs adjusting. Thank you again ☺️
Type 3 is a relatively new descriptor and I can understand why you were discharged from hospital as Type 1 some 20 years ago. In some respects it is of little concern, T1 at least ensures that your medical records always show you as insulin dependent and you get medical support as if a T1 in accordance with the NICE Guidance Note 17, recently updated.
Delighted your Libre serves you well and with accuracy. My body seems to rebel a bit against the sensor - but despite this I wouldn't choose to be without the extra overview that Libre 2 provides. I have my alarm set relatively high, close to the upper limit of 5.6; my D is categorised as brittle and I certainly can crash quickly if I'm not paying attention. So once the alarm sounds I look at the number and the trend arrow and get ready to scan more frequently if necessary. I now rarely get into hypo territory; by monitoring and responding with modest snacks, eg a 6 CHO gm biscuit, I seem to successfully head off hypos.
Wow!! I’ve just learnt so much- I had no idea your brain couldn’t communicate with your liver without a pancreas! Thank you so much for all the info- it’s been really helpful. I’m pretty sure I have the book somewhere I started to read it but put it down and forgot to pick it back up so I’ll have to go give it a read. Yeh I seem to crash quickly tooHello @Faith_exx ,
Type 3 is a relatively new descriptor and I can understand why you were discharged from hospital as Type 1 some 20 years ago. In some respects it is of little concern, T1 at least ensures that your medical records always show you as insulin dependent and you get medical support as if a T1 in accordance with the NICE Guidance Note 17, recently updated.
Regrettably T2 diabetics don't get such strong support, so better to be recognised as T1 than T2. The proportion of T3cs is, indeed, very small; less than 1% of all diabetics in UK, but it does seem to (gradually) becoming recognised a little more as a distinct Type and the significance is the other things that one's pancreas might provide. So apart from no (or minimal) insulin production and no digestive enzymes there is probably no glucagon - the hormone that should tell your liver to open the glucose store when your brain recognises that your BG is low (the brain can only communicate with your liver through the pancreas!); also no hormone somatostatin that plays a co-ordination role between insulin and glucose. You've been doing these tasks manually, ever since your pancreatectomy.
If you haven't come across it to date, there is a book called "Think Like a Pancreas" by the author Gary Scheiner. Although he is from the US he has made a lot of effort to provide European units as well as US units with virtually every numerical example he's provided. I've found it very helpful; Scheiner is himself T1 and the book is focused on insulin dependent diabetics.
Delighted your Libre serves you well and with accuracy. My body seems to rebel a bit against the sensor - but despite this I wouldn't choose to be without the extra overview that Libre 2 provides. I have my alarm set relatively high, close to the upper limit of 5.6; my D is categorised as brittle and I certainly can crash quickly if I'm not paying attention. So once the alarm sounds I look at the number and the trend arrow and get ready to scan more frequently if necessary. I now rarely get into hypo territory; by monitoring and responding with modest snacks, eg a 6 CHO gm biscuit, I seem to successfully head off hypos.
