Recent diagnosis of Type 3 ‘Secondary’ D. Struggling with Persistent Hypo’s.

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MandyAlex

MandyAlex

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Relationship to Diabetes
Type 3c
Hi. I’m a brand new member currently completely floored by persistent hypo’s, which I’m finding more than a bit scarey. Had half my pancreas removed last December due to a secondary cancer. Have felt gradually more and more unwell since the op and am finding now that no matter what I do (eg by following recommendations of quick acting followed by slow release carbs) my blood sugar just keeps plummeting (with readings of 1 both prior and 2 hours after eating).
I’m awaiting referral to Diabetic team and have requested phone call with GP today. Started Metformin 500g per day last Friday. GP surgery generally very helpful but seem a bit confused because they’re unfamiliar with my Type 3c diagnosis. My concern is how to manage these sugar lows in the ‘here and now’ - am very familiar with low carb diet but I’m finding constantly stuffing myself with carbs more than challenging.
Any advice would be most gratefully received.
Many thanks in advance.
 
Welcome to the Type 3c club that no one wants to join.
Can I firstly ask, are you on insulin and if so what are they? Did you really mean your meter said 1? That’s in coma territory or at the very least falling over. Without injecting insulin that would be pretty impossible I would think. But I’m not a medical professional. What do you feel prior to these hypos?
I’m Type 3c, 2/3 pancreas removed 16 years ago, on insulin ( basal and bolus).
 
Hi there, thanks so much for getting back to me. Bless your heart, sounds like you’ve really been through the mill.
I agree about the very low reading, I’m a bit sceptical too as I’m struggling to get much blood flow to take the reading with. However, I am fairly confident that the symptoms I am experiencing are recurring very low blood sugar symptoms: clammy, nauseous, headache, feeling faint. Any time I try to ‘draw’ on energy reserves it makes my symptoms worse.
(I can’t quite understand why I’m experiencing low blood sugar rather than the ‘high’ more associated with diabetes?)
Have run out of test strips at present, so can’t check for now.
Not on insulin at present, just started Metformin.
 
MandyAlex said:
Hi there, thanks so much for getting back to me. Bless your heart, sounds like you’ve really been through the mill.
I agree about the very low reading, I’m a bit sceptical too as I’m struggling to get much blood flow to take the reading with. However, I am fairly confident that the symptoms I am experiencing are recurring very low blood sugar symptoms: clammy, nauseous, headache, feeling faint. Any time I try to ‘draw’ on energy reserves it makes my symptoms worse.
(I can’t quite understand why I’m experiencing low blood sugar rather than the ‘high’ more associated with diabetes?)
Have run out of test strips at present, so can’t check for now.
Not on insulin at present, just started Metformin.
Click to expand...
I think you might benefit from the trial of the Libre sensors, to track what might be happening with your blood sugars, without constant finger pricking.

Do you know what your blood sugars were doing when you were diagnosed? If you were running high, and have now modified your diet, it could be you are experiencing false hypos. Those are all the horrid hypo symptoms, without actually being incredibly low. It is not uncommon where diet/treatments have change, causing a marked change in blood sugar levels.

It feels important that you should be testing, one way or another.
 
Some meters give an error message with too little blood but others just give a very low reading, unhelpful and quite alarming to see!
 
Your treatment plan does not sound to be appropriate for your condition as if diagnosed as Type 3c you should be receiving the support and treatment as if Type 1 and be seen by the diabetic clinic rather than the GP
Are you taking Creon to replace your pancreatic enzymes.
I am surprised that your blood glucose is not high rather than low.
What monitor are you using.
A few Type 3cs here so hopefully they will be along but if in doubt about how you feel with those very low blood glucose levels then you should phone 111
 
MandyAlex said:
Hi there, thanks so much for getting back to me. Bless your heart, sounds like you’ve really been through the mill.
I agree about the very low reading, I’m a bit sceptical too as I’m struggling to get much blood flow to take the reading with. However, I am fairly confident that the symptoms I am experiencing are recurring very low blood sugar symptoms: clammy, nauseous, headache, feeling faint. Any time I try to ‘draw’ on energy reserves it makes my symptoms worse.
(I can’t quite understand why I’m experiencing low blood sugar rather than the ‘high’ more associated with diabetes?)
Have run out of test strips at present, so can’t check for now.
Not on insulin at present, just started Metformin.
Click to expand...
If you’re hands were wet it could dilute the reading. But I agree with @AndBreathe if you’re not on insulin and your BGs were very high to start with it could definitely be false hypos. Try warming your hands up before testing, swing them about to get the blood flowing. Also worth getting the Freestyle Libre trial. I am hoping as a Type 3c with only half a pancreas your strips are on prescription. If not demand they are. It’s not easy but a weirdo diabetic, it took me 8 years before they took me seriously. You’ll have to fight every step of the way. Any questions fire away. Elaine.
 
If you are struggling to get a blood sample then try this technique, wash you hands in warm water and dry well, hold your hand below your heart and gently massage your finger towards the end. I find the middle finger the easiest, if you place your thumb on the pad of the finger and prick just to the side of there, you can press gently with your thumb and collect the drop with your strip. I hope that helps.
 
@MandyAlex - picking up on @eggyg 's comment about the reading you are reporting. Should not be anywhere near 1 if you are not on insulin.

Any chance of getting a spot check done either at your surgery or a pharmacy to see whether they agree with the reading you get?
 
The lowest I have ever known any meter to read is 1.8, below which they just show LO - and highest 33ish, above which HI.

Hence - first thing I'd do is get a different meter and strips, cos there's definitely summat wrong with the one you have.

If you really are getting lows and are not injecting insulin - that means your own pancreas, what's left of it, must be still producing it since there is no other way on earth your body can produce it. Now - of course I don't know any clinical details of your body - so have no clue whether that's possible - depends on exactly how much of your pancreas they needed to remove. However clearly 'they' thought your insulin production would be affected, hence why they've referred you to the D clinic.

Was it the hospital though, or the GP since the op?
 
Hi MandyAlex, I've lived without a pancreas since 2010. If your operation was December 2022 you are only 7 months into recovery so you should (unfortunately) expect blood sugars to be variable - possibly for another 12-18 months. I have said on here and on the support site for my cancer, that anyone going through pancreatic surgery should be given a Dexcom G6 continuous glucose monitor, no one can predict how your pancreas will react to the surgery. You need to push the GP / Diabetes Clinic for this especially if you are seeing such low levels at night and are not recognising hypo symptoms whilst your blood sugars are between 4 and 5. The fatigue and stress you are facing on top of the operation recovery can become a vicious circle, with a CGM at least you can set your own action level and take additional carbs before it gets too low.
 
Thank you *all* for your kind and very helpful suggestions and techniques - I’ll most definitely take them all on board. I was feeling a bit lost and alone out there for a bit. I’m incredibly relieved to have your community support and experience to lean on.
Just as an update, I’d also spoken to my Nurse Specialist this morning who said she’d refer me to the D Clinic. Incredibly, they have just rung me and offered me an appointment tomorrow afternoon to check my levels - and my weird machine - and we’ll take it from there.
Thanks so much again, I’ll let you know how it goes.
 
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