Update to my previous post requesting advice

[Maj]

I messaged before as I was concerned about my readings being all over the place
and being lower after I ate than when I fasted!?
I was even more confused when I finally got my most recent HBA1C results back and they are 46 which I am told is pre diabetic range.........last reading was 59!
I was advised unless I am on specific medication I should not be using home test meter as it is not accurate or helpful unless on specific tablet or insulin.
I was so shocked I rang DIABETES UK to double check this and apparently it’s correct and was given same advice HBA1C is best/most accurate test for my situation!
So now I am hyper confused how can I be pre diabetic with only head of pancreas and not taking CReon (a medication for pancreatic insufficiency which I was offered as I had to have pancreas resected due to metastatic cancer but refused as it’s made of animal product)
So not only have I magically reduced my glucose levels in three months but I also appear to have pancreas that works ok despite only the head remaining.
I unfortunately still have no idea why I was and still am (but not as often) suffering from bouts of feeling extremely unwell - which I was attributing to high glucose readings‍♀️ But I guess all in all it’s good news for me despite confusing my brain so much it ached.....

 

[Drummer]

Well - it might be the policy of the NHS - but as home test meters are how type one diabetics ensure they inject the right amount of insulin for their own safety and that of others - you are at liberty to make your own decision about the information you were given.
I believe that your diabetes type is 3c, not type 2, and should not have the same treatment or advice as for a type 2.
Maybe you do not have only the head of the pancreas left, but a little more - enough to get by on, it seems, at a guess.
Maybe other type 3cs can throw more light on your situation.

 

[rebrascora]

My two thoughts are ....

1. It is relatively early days since your surgery and a combination of Metformin and perhaps reduced carb intake and also perhaps a little increased exercise are all helping your remaining pancreas to cope at the moment.... I think for @eggyg it was 3 years after resection before diabetes diagnosis and longer still before insulin was required. I am sure it is an individual thing and will depend on the distribution of beta cells remaining in the head of the pancreas or indeed how much pancreas is left.

2. It is possible that you may be suffering Reactive Hypoglycaemia where your levels are dropping below 4 on occasion. Someone recently posted on the forum about having this problem after a resectioned pancreas if I remember rightly. They had a Freestyle Libre so the hypos were clearly shown, whereas with you, if you are not testing regularly then apart from feeling like you are wobbly and need to eat something, you might not be aware. The hypos will then counteract the spikes in BG meaning that the HbA1c will not reflect the problems which are occurring and in this situation, home testing would be very advantageous to see what is really happening.

Unfortunately there are a lot of Health Care Professionals who are old school and think they know best but things move forward and they are left behind and they want to keep their patients there with them. If Diabetes UK is also supporting this myth that home testing for Type 2 diabetes is not helpful, then shame on them too!

Knowledge is power and the person who needs that power is the person who is managing their diabetes day by day, and meal by meal, not a health care professional who might see them once every 3 or 6 months if they are lucky and interprets their results from a single blood test (HbA1c) which is known to possibly be hiding problems.... Type 1 diabetics have often had great HbA1c results but suffered repeated and damaging hypos and hypers in achieving that result..

If I sound angry, it is because I am!!

 

[Maj]

I

Hi Barbara
Thanks for replying
You sound well informed not angry
Yes I said to @eggye it all appears individual for post op patients (she lasted a long time post op before requiring medication and is doing well while me I needed medication sooner and feel like a blob)
I was on insulin for nine days post op (but I think that’s routine while pancreas readjusting)
I was psyching myself up for needing insulin hence the contact with forum (really bad when it comes to needles and the administering of insulin, it all sounds complicated to my mushy brain)
I have learnt to take what is said to me with a pinch of salt as the old saying goes
So many times told something that later turns out to be inaccurate.
I actually found it comforting to be told home readers are not accurate in my specific situation because in back of my mind readings were scary while at front of my mind confusing -(worried bit of pancreas left was failing wondering what was next for me to get my head around as my “new normal”)
My team are a Neuroendocrine cancer team they know all about type 3c diabetes or pancreatic diabetes which I believe is old term for it.
It’s not that medical professionals are not listening it’s that I don’t meet threshold for diagnosis at this time........ if they added medication when not needed would probably put more pressure on pancreas hat is left I guess. But I am now wondering why I don’t get to see endocrinologist/diabetic consultant even though I have one on my multidisciplinary team - I will make a note to ask at my next appointment (but guess they will only look at blood test results)
If I can go from hba1c 59 to 46 in blink of an eye then I am sure it’s possible to go high just as quick which is sad/scary..........
Personally I doubt it’s to do with diet and exercise maybe more to do with metformin working on supporting pancreas
My bloods were never below 6.7 on waking/fasting - were lower 1 to 2 hours after eating usually in 5-6.4 range- random bloods lowest was always 7 going as high as 15.8 taken over two hours after eating
I was told by diabetic nurse range for me personally is 5 fasting and 7 up to two hours after eating maybe that needs to reassessed

 

[Maj]

Well - it might be the policy of the NHS - but as home test meters are how type one diabetics ensure they inject the right amount of insulin for their own safety and that of others - you are at liberty to make your own decision about the information you were given.
I believe that your diabetes type is 3c, not type 2, and should not have the same treatment or advice as for a type 2.
Maybe you do not have only the head of the pancreas left, but a little more - enough to get by on, it seems, at a guess.
Maybe other type 3cs can throw more light on your situation.

Hi Drummer
Thanks for reply
They said home testing not suitable/helpful for me personally not anyone else’s situation, they said I would get readings that are all over the place and make no sense again my personal situation not that no one should use home test meters.....
I had body and tail of pancreas removed as they had tumours spreading across them,
so unfortunately only head remains.
I have been assessed for type 3c diabetes and been told I don’t meet threshold for diagnosis as apparently it’s to do with pancreatic insufficiency causing inability to regulate insulin
they monitor lipases, protease and amylase levels, regular scans and occasional monoclonal fecal elastase-1 tests along with liver enzyme tests which apparently would help diagnose type 3c.
Treatment for type 3c is same as type 2 or usually start with metformin then other meds if metformin not working - I guess there are only specific medications out there to help with regulating insulin.
It is frustrating at times as although my bloods are showing one thing my body feels another but until I start “failing”
tests then here I am still trying to get my head around things

 

[Drummer]

But you are exactly the person who needs to test - I am a totally uninteresting standard type two who could see exactly what my response to diet was within a week of getting a meter.
I'm not a betting man, but I would take odds on type 3c being totally unlike type 2.
I was overproducing insulin until my pancreas stopped being hysterical after all the carbs I was supposed to eat.
You need to know what your blood glucose is doing - I'd have thought - and the only way to tell is to test.

 

[DaveB]

The advice from Diabetes UK was not the best. Everyone who has diabetes or is marginal should have a meter as they are low-cost and easy to use. The important thing is not to become obsessive about them unless you need to e.g. when on insulin. They are not a substitute for the accurate and important HBA1C but can guide you along the way. The meter accuracy is +/- 15% maximum.

 

[adrian1der]

They are not a substitute for the accurate and important HBA1C but can guide you along the way.

Well, I would say they measure different things. The HbA1c remember is a 3 month average while the finger prick test is a measure at a moment in time. You could have a good HbA1c but have massive spikes which as I understand it can cause complications. We are looking for a set of rolling hills rather than a set of rugged mountains and deep valleys even though the HbA1c would be the same in the two cases. Or am I missing something?

 

[Maj]

The advice from Diabetes UK was not the best. Everyone who has diabetes or is marginal should have a meter as they are low-cost and easy to use. The important thing is not to become obsessive about them unless you need to e.g. when on insulin. They are not a substitute for the accurate and important HBA1C but can guide you along the way. The meter accuracy is +/- 15% maximum.

I don’t usually check my bloods but was looking for a explanation for how I was feeling obviously blood glucose was first thing I thought of and sure enough when I started testing my bloods were high but also all over the place with no pattern associated with fasting/eating ect. I will see if I can speak to an endocrinologist when I next speak to my cancer team as I have one but have never spoken to them directly.
I am just happy I don’t need to use needles daily and be competent enough to monitor and administer my own insulin the idea terrifies me if I am honest

 

[Maj]

Well, I would say they measure different things. The HbA1c remember is a 3 month average while the finger prick test is a measure at a moment in time. You could have a good HbA1c but have massive spikes which as I understand it can cause complications. We are looking for a set of rolling hills rather than a set of rugged mountains and deep valleys even though the HbA1c would be the same in the two cases. Or am I missing something?

I feel overwhelmed it all sounds so complicated - I will speak to my team and try get advice from endocrinologist, I am on statins for borderline cholesterol and there is a history of heart disease and stroke in family have you any thoughts if diabetes put me at higher risk of heart disease?

 

[ColinUK]

My two thoughts are ....

1. It is relatively early days since your surgery and a combination of Metformin and perhaps reduced carb intake and also perhaps a little increased exercise are all helping your remaining pancreas to cope at the moment.... I think for @eggyg it was 3 years after resection before diabetes diagnosis and longer still before insulin was required. I am sure it is an individual thing and will depend on the distribution of beta cells remaining in the head of the pancreas or indeed how much pancreas is left.

2. It is possible that you may be suffering Reactive Hypoglycaemia where your levels are dropping below 4 on occasion. Someone recently posted on the forum about having this problem after a resectioned pancreas if I remember rightly. They had a Freestyle Libre so the hypos were clearly shown, whereas with you, if you are not testing regularly then apart from feeling like you are wobbly and need to eat something, you might not be aware. The hypos will then counteract the spikes in BG meaning that the HbA1c will not reflect the problems which are occurring and in this situation, home testing would be very advantageous to see what is really happening.

Unfortunately there are a lot of Health Care Professionals who are old school and think they know best but things move forward and they are left behind and they want to keep their patients there with them. If Diabetes UK is also supporting this myth that home testing for Type 2 diabetes is not helpful, then shame on them too!

Knowledge is power and the person who needs that power is the person who is managing their diabetes day by day, and meal by meal, not a health care professional who might see them once every 3 or 6 months if they are lucky and interprets their results from a single blood test (HbA1c) which is known to possibly be hiding problems.... Type 1 diabetics have often had great HbA1c results but suffered repeated and damaging hypos and hypers in achieving that result..

If I sound angry, it is because I am!!

To second this, my cousin, who happens to be head of emergency medicine for half of a whole country, said “there’s no point you testing BG every day as all it’ll do is give you incorrect figures and stress you out”.
I disagreed with their opinion.

 

[Maj]

But you are exactly the person who needs to test - I am a totally uninteresting standard type two who could see exactly what my response to diet was within a week of getting a meter.
I'm not a betting man, but I would take odds on type 3c being totally unlike type 2.
I was overproducing insulin until my pancreas stopped being hysterical after all the carbs I was supposed to eat.
You need to know what your blood glucose is doing - I'd have thought - and the only way to tell is to test.

But my bloods are hysterical all over the place with finger prick and perfectly fine with hba1c which I joke is a bit like kids naughty at home and well behaved in public so no one understand why I am exhausted and nauseated!
I will see if I can speak to endocrinologist when I spoke to a diabetic education nurse she told me whomever “removed parts of your pancreas should be monitoring and advising you” hospital and GP think my glucose levels are good “considering all I’ve been through” also I only eat veg/fruit all of which contain sugar and most of which are carbs so there is that (dietician told me I should try eat milk, eggs, fish at least - if I won’t take medication made of animal products why would I eat animal products it’s like banging your head on a brick wall)

 

[rebrascora]

But my bloods are hysterical all over the place with finger prick and perfectly fine with hba1c

It is normal for blood glucose readings to be all over the place, even non diabetic people have quite a significant level of variation and can go less than 4 and higher than 10 on occasions. That does worry some people and unless you have a system for testing rather than just random readings here and there, then I agree you will not see any benefit from home BG testing except on occasions when you feel unwell, then spot testing will usually tell you if it is a problem with your BG levels or to look elsewhere for the cause.
HBa1c is just like an average of 3 months worth of constant BG monitoring... So if you took a BG reading every minute, day and night for 3 months and averaged them it would give you a good indication of your HbA1c (This is how the Freestyle Libre sensors work.... sampling your levels every few minutes constantly.... but as with all averages, the highs and lows cancel each other out, so it doesn't always tell you the whole story either which is why medical professionals are starting to be more interested in Time in Range rather than HbA1c.

 

[DaveB]

Well, I would say they measure different things. The HbA1c remember is a 3 month average while the finger prick test is a measure at a moment in time. You could have a good HbA1c but have massive spikes which as I understand it can cause complications. We are looking for a set of rolling hills rather than a set of rugged mountains and deep valleys even though the HbA1c would be the same in the two cases. Or am I missing something?

Hi. I agree with you. Both tests have their value.

 

[adrian1der]

I think we would all agree that random finger prick tests don't tell us anything meaningful. However, if you test every day on waking for example, and record your results, it will show you a trend - upwards, downwards or flat. That's what makes it worthwhile. It was good, in the weeks after my diagnosis, to see the graph of my fasting BG on a downward trend as it showed that what I was doing was working and that I was on track. These days it's pretty flat and the fasting line only wavers slightly either side of mid-5.

Couldn't agree more @Anitram

I also found testing before and two hours after eating an essential tool in understanding which foods I can tolerate and equally importantly which I couldn't

 

[Maj]

It is normal for blood glucose readings to be all over the place, even non diabetic people have quite a significant level of variation and can go less than 4 and higher than 10 on occasions. That does worry some people and unless you have a system for testing rather than just random readings here and there, then I agree you will not see any benefit from home BG testing except on occasions when you feel unwell, then spot testing will usually tell you if it is a problem with your BG levels or to look elsewhere for the cause.
HBa1c is just like an average of 3 months worth of constant BG monitoring... So if you took a BG reading every minute, day and night for 3 months and averaged them it would give you a good indication of your HbA1c (This is how the Freestyle Libre sensors work.... sampling your levels every few minutes constantly.... but as with all averages, the highs and lows cancel each other out, so it doesn't always tell you the whole story either which is why medical professionals are starting to be more interested in Time in Range rather than HbA1c.

I was testing first thing in morning/fasting and 1/2 hours after meals as well as one random test a day
Mornings were usually above six after food was at times lower than some fasting readings and ransoms were usually high
All very confusing I was trying to find a pattern to see if my diet was issue (probably is)
Will look into freestyle libre thanks