rocketing HBa1c and total pancreatectomy

[Dunagree]

Hi

My daughter had a whipple and TP in 2018 and became a diabetic - 3c type. She got the metronic 640G pump last year and her HBAIC has gone from 54 to 75 in 4 months. She doesn’t have lots of hypos and allows herself to ‘run high’ but she was thinking she had reasonable control - She looks after her diet, hasn’t gained weight, exercises and takes creon. She’s struggled with fatigue from the outset but can’t think what would be causing the HBAIC to rise so quickly and it is worrying.

Any other pump users who have faced a similar problem?

Prior to getting the pump she had 6-7 injections a day and used a libre.. so the pump was a game changer is so many ways.

Keen to hear from anyone - the GP has referred her to the hospital diabetes clinic as they’re not sure! The diabetic clinic has a backlog and she has been waiting 2 years to see the team!! Hoping for for some advice here

 

[rebrascora]

She doesn’t have lots of hypos and allows herself to ‘run high’

Hi. Sorry to hear your daughter needed a Whipple but sounds like she has been really lucky to get a pump. Has she had support with adjusting that or is that the problem. Allowing herself to run high will cause her hbA1c to increase. I wonder if her basal rates need amending. It is often the case that basal needs increase during the first year or two. Also some of us have found that our basal needs changed after our Covid Vaccine.... might be coincidence, may not be.
Monitoring your levels and adjusting your basal doses is key to good diabetes management in my opinion, so that would be what I would look at in her situation. Does she still have the Libre and if so, what is that predicting her HbA1c to be? Normally Libre reports it a few mmols lower than the actual result but it shouldn't be too far out so that might give her an indication of whether the HbA1c is an accurate reflection of her control.

Something else to consider is anaemia, particularly as she is feeling fatigued. Anaemia can inflate the HbA1c because there are less red blood cells for the blood glucose to stick to (and HbA1c is a measure of this), so more glucose gets attached to individual cells, making HbA1c look worse that the BG levels would account for. It might be worth her GP testing her for anaemia if that hasn't been looked at.

Let us know how she gets on and any further info from Libre if she still has it.

 

[Inka]

Hi @Dunagree I find with a pump any slight relaxation of targets can cause an increase. The pump is quite precisely balanced unlike MDI where you can ‘cheat’ a bit more, ie have a nibble of something and your basal will mop it up.

As you say this is a recent change, perhaps it’s simply that her basal rate and ratios need reviewing? I have to change mine a fair bit over the year. Weather, stress, weight, etc etc - so much an affect it. Often I don’t even know what’s caused it. I just tweak my basal and try to get back on track.

 

[Pumper_Sue]

Hi

My daughter had a whipple and TP in 2018 and became a diabetic - 3c type. She got the metronic 640G pump last year and her HBAIC has gone from 54 to 75 in 4 months. She doesn’t have lots of hypos and allows herself to ‘run high’ but she was thinking she had reasonable control - She looks after her diet, hasn’t gained weight, exercises and takes creon. She’s struggled with fatigue from the outset but can’t think what would be causing the HBAIC to rise so quickly and it is worrying.

Any other pump users who have faced a similar problem?

Prior to getting the pump she had 6-7 injections a day and used a libre.. so the pump was a game changer is so many ways.

Keen to hear from anyone - the GP has referred her to the hospital diabetes clinic as they’re not sure! The diabetic clinic has a backlog and she has been waiting 2 years to see the team!! Hoping for for some advice here

Your daughter should be under the pump clinic and seen yearly at the very least. Pumps do not come under GP care.

The reason your daughter is tired is because she has high blood sugars. So she needs to basal test adjust her basal so it's correct then check her carb ratio.

Does she have the book pumping insulin by John Walsh? If not that would also be a good start.

As she has only been pumping for a short time why has there been no contact with the pump team DSN to review her management? There must be contact details to reach the DSN.

 

[everydayupsanddowns]

Sorry to hear about your daughter’s increased HbA1c.

It‘s not hugely unusual to have a bit of rise and fall with A1c over the years, as circumstances change, and life ebbs and flows.

Is she aware of rising levels? Does her BG meter give averages over 7, 30, 90 days etc?

I used the MM640 successfully for several years and it was very effective at protecting me from lows, but it doesn’t add insulin if BGs are above target.

Do you know what her target range is set at? I found it better to set the upper and lower values as the same number, because the Medtronic bolus wizard aims up to the lower level and down to the upper level - where I would prefer to aim mid-range.

Hope she can find a way to tweak doses and strategies to gently bring that A1c back to a place she is happier with.

 

[martindt1606]

Hi. Sorry to hear your daughter needed a Whipple but sounds like she has been really lucky to get a pump. Has she had support with adjusting that or is that the problem. Allowing herself to run high will cause her hbA1c to increase. I wonder if her basal rates need amending. It is often the case that basal needs increase during the first year or two. Also some of us have found that our basal needs changed after our Covid Vaccine.... might be coincidence, may not be.
Monitoring your levels and adjusting your basal doses is key to good diabetes management in my opinion, so that would be what I would look at in her situation. Does she still have the Libre and if so, what is that predicting her HbA1c to be? Normally Libre reports it a few mmols lower than the actual result but it shouldn't be too far out so that might give her an indication of whether the HbA1c is an accurate reflection of her control.

Something else to consider is anaemia, particularly as she is feeling fatigued. Anaemia can inflate the HbA1c because there are less red blood cells for the blood glucose to stick to (and HbA1c is a measure of this), so more glucose gets attached to individual cells, making HbA1c look worse that the BG levels would account for. It might be worth her GP testing her for anaemia if that hasn't been looked at.

Let us know how she gets on and any further info from Libre if she still has it.

Anybody that has had a total pancreatectomy should be given a pump once they have built up a short period of experience of living with insulin dependency and have completed DAFNE. It should not depend on luck.

 

[Pumper_Sue]

Rereading the post by OP it just appears to imply his daughter thinks the pump is plug and play.
Bottom line is the pump only does what you tell it. So if you haven't done any basal testing or increased insulin to counter act the high blood sugars the end result is a high A1c.

Anybody that has had a total pancreatectomy should be given a pump once they have built up a short period of experience of living with insulin dependency and have completed DAFNE. It should not depend on luck.

Unfortunately some people are not capable of using a pump so it's not an option.

If OP's daughter doesn't seek help to address her problems then the pump will be taken away as it's not cost effective and someone else can have the funding instead.

 

[martindt1606]

Hi

My daughter had a whipple and TP in 2018 and became a diabetic - 3c type. She got the metronic 640G pump last year and her HBAIC has gone from 54 to 75 in 4 months. She doesn’t have lots of hypos and allows herself to ‘run high’ but she was thinking she had reasonable control - She looks after her diet, hasn’t gained weight, exercises and takes creon. She’s struggled with fatigue from the outset but can’t think what would be causing the HBAIC to rise so quickly and it is worrying.

Any other pump users who have faced a similar problem?

Prior to getting the pump she had 6-7 injections a day and used a libre.. so the pump was a game changer is so many ways.

Keen to hear from anyone - the GP has referred her to the hospital diabetes clinic as they’re not sure! The diabetic clinic has a backlog and she has been waiting 2 years to see the team!! Hoping for for some advice here

Hi I had a Total Pancreatectomy in 2010 and started on the Animas pump in 2014. I now have the Tandem tslim and Dexcom G6 (2019). The tslim has Control IQ which has made a significant impact on my blood sugar control, especially overnight,
I am no longer judged against an HbA1c Target (it used to be 55 - 65), we now operate based on Time in Range.
My target ranges are:
06:00 - 22:00 3.9 to 10.0
22:00 - 06:00 4.4 to 8.3
Current Target is to be within these ranges at least 65% of the day.
The last week I have hit 85% each day.
In the last 90 days I have failed to hit target 13 times but have been told not to worry about the odd day or two. There are so many variables that can impact - bad carb counting, bad infusion site, last insulin from vial, under / over dosing Creon, stress, exercise, side effects from the whipple / TP.
Following my TP I was referred straight away to the Type 1 clinic - I had a nightmare start to insulin dependency (post TP no one on the ward seemed to realise i needed insulin and I ended up back in ICU).
Happy to try and provide assistance / support if needed, there are not many Total Pancreatectomy Pumpers around.

 

[martindt1606]

Rereading the post by OP it just appears to imply his daughter thinks the pump is plug and play.
Bottom line is the pump only does what you tell it. So if you haven't done any basal testing or increased insulin to counter act the high blood sugars the end result is a high A1c.


Unfortunately some people are not capable of using a pump so it's not an option.

If OP's daughter doesn't seek help to address her problems then the pump will be taken away as it's not cost effective and someone else can have the funding instead.

Pumper_Sue Living without a Pancreas is a complex 24*7 challenge which Dungarees daughter seems to be aware of. There are times where you need to be creative and let your blood sugars run high and there are also times when you need to recognise the rising trend, analyse why, and consider what you have planned for the next few hours, if necessary you have to be brave and take an additional bolus. Sounds like Dungarees daughter would benefit from a DAFNE course or spending a little time with other pump users to gain additional experience and confidence. In the 12 years since my total pancreatectomy the only time i have sat in a room and talked to other diabetics was when i did DAFNE.

 

[trophywench]

Well that last bit is common to most people ! - absolutely not special to folk with total pancreatectomies. With there being less if any DAFNE courses these days, those of us who've benefitted from them in the past will get fewer as time goes on I suppose.

 

[Pumper_Sue]

Pumper_Sue Living without a Pancreas is a complex 24*7 challenge which Dungarees daughter seems to be aware of. There are times where you need to be creative and let your blood sugars run high and there are also times when you need to recognise the rising trend, analyse why, and consider what you have planned for the next few hours, if necessary you have to be brave and take an additional bolus. Sounds like Dungarees daughter would benefit from a DAFNE course or spending a little time with other pump users to gain additional experience and confidence. In the 12 years since my total pancreatectomy the only time i have sat in a room and talked to other diabetics was when i did DAFNE.

With respect,
I have Type1 diabetes, Addison's disease, MS, Coeliac disease, and a cyst on my pancreas. Funny enough this takes a lot of management and hard work.
A pump is not plug and play you change the setting as needed, no matter what condition/s you have.
So it boils down to lack of education or lack of doing anything to help ones self.
OP's daughter must ask for help as she isn't managing for what ever reason because if she doesn't the pump will be taken away as it will be classed as no benefit and a waste of money.