Newly diagnosed

[Spudmum]

Good morning
I just wanted to say hello, and to say how pleased I am to have joined this group. I was diagnosed two weeks ago with type 1, brought about by cancer treatment. I have had two hypos already, including one this morning before I’d even got out of bed! I’ll be looking at others posts to see if there’s anything I can do to help myself.

 

[rebrascora]

Hi and welcome.

Sorry to hear you have developed Type 1 as a result of cancer treatment. There have been one or two others who have joined the forum in similar circumstances but I don't think they post regularly and I can't remember their user names as a result.
Also sorry to hear you are experiencing hypos so soon into your journey with Type 1 but can you just clarify that they are genuine hypos? The reason I ask is that many people are now using a Constant Glucose Monitor like Libre from the start of their journey and whilst this tech can be a real game changer, it isn't always reliable and can occasionally give false low alarms. It is therefore always important to double check any lows with a finger prick unless you feel very obviously hypo. Times when this is most likely to happen are through the night when you perhaps roll over and all your weight presses on the sensor. We call this a "compression low" and there will usually be a sudden dip on the graph about 20 mins after rolling onto it and it will then return to it's previous level and 30 mins after you roll off it again. The sensors can also give false lows if they are starting to lift where the adhesive is failing and this can lead to the filament getting kinked.
If they are genuine hypos then have you been given good advice about how to treat them.... perhaps something called the "rule of 15"? Again, during a hypo it is not recommended to rely on your CGM to check recovery but to finger prick 15 mins after treating it with a finger prick to make sure you are back above 4 and the treatment has worked. If you are not above 4 at that point, you take a second (15g) hypo treatment and wait another 15 mins and retest with another finger prick.
What is your chosen hypo treatment and do you keep them with you at all times?

If you can expalin the circumstances of how/when the hypo happened we can perhaps guide you as to what might have caused it.

 

[Spudmum]

I do wear a Libre sensor, so was really surprised that I haven’t been warned about rolling over causing a false alarm. I did a finger prick test, and it confirmed my blood sugar had dropped to 3.7. I had a small glass of orange juice, and sat still for 15 minutes, and watched to see that my level was increasing above 5. The only symptom I had was trembling , but not externally. I could feel my body trembling inside, which was a bit strange. I am only on a once a day dose of Lantus.

 

[rebrascora]

Ah OK. Well at least we know which insulin is responsible if you only use one. When do you take your Lantus and what time did the hypo happen?

None of us were warned about compression lows. It was something we discovered from sharing our collective experiences here on the forum. In fact we have a thread about the Limitations and Precautions of using CGM which I will link below. Understanding their "quirks" helps you know when you can rely on them and when to be sceptical and double check.

H

Thread 'CGM limitations and precautions'

Sep 8, 2023

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.

If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...

• helli
• Replies: 23
• Forum: Pumping and Technology

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[Spudmum]

Ah OK. Well at least we know which insulin is responsible if you only use one. When do you take your Lantus and what time did the hypo happen?

None of us were warned about compression lows. It was something we discovered from sharing our collective experiences here on the forum. In fact we have a thread about the Limitations and Precautions of using CGM which I will link below. Understanding their "quirks" helps you know when you can rely on them and when to be sceptical and double check.

H

Thread 'CGM limitations and precautions'

Sep 8, 2023

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.

If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...

• helli
• Replies: 23
• Forum: Pumping and Technology

• 
• 
• 

 

[Spudmum]

I administer my insulin around 6am, and the hypo was around 5.30.

 

[HayleyR]

Hi @Spudmum and a very warm welcome from me. 🙂. Sorry you are now having to contend with Diabetes after everything you've been through but hopefully you'll find this Forum a great source of help and support.

 

[everydayupsanddowns]

Welcome to the forum @Spudmum

There is a form of diabetes which is relatively newly defined, and still not very well known even among specialists, called Type 3c. We have a few T3cs on the forum, and my understanding is that diabetes which comes from pancreatic cancer treatment (rather than autoimmune attack) is often T3c, rather than T1?

There’s an overview of type 3c here which may be interesting.

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

 

[rebrascora]

Wow! That is surprising! So you hypoed just as your Lantus was running out first thing in the morning! Normally Lantus doesn't last a full 24 hours but has a peak of activity about 5 hours after injecting, so really surprising that you hypoed when it was pretty well run out, especially as most of us would find our levels naturally rising at that time of the morning due to Dawn Phenomenon. I wonder if your dose is larger than your basal needs (liver output) in order to cover the food that you eat as well as that liver output and as a result it is dropping you low overnight.
How much is your dose?

Have you contacted your DSN to let them know you are experiencing hypos?

@everydayupsanddowns I didn't see any mention of pancreatic cancer so assumed it was the immunotherapy drugs used to treat some cancers which had caused the immune attack on the beta cells, as some other cancer fighting patients have experienced, hence making it Type 1 but obviously if it is pancreatic cancer, that would likely make it Type 3c.

 

[everydayupsanddowns]

@everydayupsanddowns I didn't see any mention of pancreatic cancer so assumed it was the immunotherapy drugs used to treat some cancers which had caused the immune attack on the beta cells, as some other cancer fighting patients have experienced, hence making it Type 1 but obviously if it is pancreatic cancer, that would likely make it Type 3c.

Ah true. I have a close friend currently facing pancreatic cancer (which was also what Jane died from), so it’s a bit all-consuming in my head at the moment.

 

[rebrascora]

@everydayupsanddowns So sorry hear about your friend and can totally understand how that would slant your take on it especially after your late wife's battle with it. Pancreatic cancer does seem to be very topical (newspaper articles and celebrity diagnoses) and much more common than it previously seemed to be and maybe your assumption is correct in this case but just wanted to clarify in case it is some other type of cancer and your comment confused the OP.

 

[Proud to be erratic]

I also wondered if the T1 diagnosis was really a T3c variant. At this stage it's probably more important to ensure that @Spudmum is perceived everywhere as if T1 and gets the right support, eg CGM, without quibbles [incidentally I was discharged after my Whipples in Feb 20 as T1]. It's later on when the distinction has more relevance; my GP failed to appreciate that having no pancreas made several other issues much more challenging - she clearly didn't have her medical mind in its right place! Luckily I was still firmly under the Surgical Hospital Team at Oxford and they overtook the Bucks GP and Hospital nonsenses. Also my Macmillan Chemo nurses were wonderful and breezed over difficulties in those first 6 months; even their dietician brought more sense and quality to my care than the Bucks dietician ever did.

Welcome @Spudmum, sorry you need to be here at all - but we're a friendly crowd. Could you possibly please satisfy my curiosity - was your T1 diagnosis arrived at after specific tests such as for C peptides? At what point in your cancer treatment did you present diabetes symptoms? Has anyone indicated if your basal insulin might need to be increased with a faster acting bolus insulin in due course, putting you eventually on Multiple Daily Injections (MDI). A little more info could help us share more relevant experiences. Don't worry if this is too intrusive or overwhelming to recall and analyse just now.

You have enough going on with being insulin dependent AND trying to stay calm and relaxed in the face of your cancer treatment is vital. Is that treatment still ongoing or are you now being periodically monitored?

My pancreatic cancer (PC) presented clear symptoms in late 2019 and thus my panc'y was removed in Feb '20. Throughout 2020 I had major interaction with my Surgical and Oncology teams, then my Diabetes team steadily became a 3rd major part of my life; frustratingly that took 11 months after my pancreas removal for Endocrinology to be fully put in place. Surgical folk signed me off eventually. In the background I had Gastroenterology interventions, Diatetic advice and now Urolgy has returned to the mix of Consultants. I'm anticipating getting my Oncology signed off as clear this month! Of course I'm very grateful for all that's happened - but there have been some confusions along the way. The Type of diabetes that we get diagnosed with is fundamentally because of the cause of our D. One big component of the T3c diagnosis has been that "some other" cause has brought about my D. I'm neither T2 nor T1, but I am largely "as if T1". Removing my panc'y is at the extreme end of panc'y damage, from medical intervention - hence T3c. Steroids can be a different aspect of (necessary) medical intervention causing panc'y damage - and hence diabetes. Enough waffle from here, welcome to the Forum