I am confused.

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MalcBell

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Type 2
I am new to this forum and grateful that it exists. I was diagnosed with type 2 diabetes in December 2022 and I was given a score of 79? I went on a healthy eating campaign and upped my exercise to as many walks as I was able. I lost 17 kilos (almost 3 stone) and returned to see my nurse yesterday after having a blood test done last week. My new score was 138! I was placed on metformin in December and I've been taking 2 per day regularly.
When I do a glucose test at home in the morning I'm scoring around 15 - 16 mmol/l
The reason for my confusion is how do the NHS score the results. I cannot find any charts that match the scores I was provided. Is 138 high and what dangers is this causing me? Also, anybody have similar experience of such a sharp spike?
The nurse has provided me with an increased plan of medication. My diet has reduced carbs and sugary products.
I would really appreciate some feedback to help me understand my confusion.
Thank you in advance Malcolm
 
MalcBell said:
I am new to this forum and grateful that it exists. I was diagnosed with type 2 diabetes in December 2022 and I was given a score of 79? I went on a healthy eating campaign and upped my exercise to as many walks as I was able. I lost 17 kilos (almost 3 stone) and returned to see my nurse yesterday after having a blood test done last week. My new score was 138! I was placed on metformin in December and I've been taking 2 per day regularly.
When I do a glucose test at home in the morning I'm scoring around 15 - 16 mmol/l
The reason for my confusion is how do the NHS score the results. I cannot find any charts that match the scores I was provided. Is 138 high and what dangers is this causing me? Also, anybody have similar experience of such a sharp spike?
The nurse has provided me with an increased plan of medication. My diet has reduced carbs and sugary products.
I would really appreciate some feedback to help me understand my confusion.
Thank you in advance Malcolm
Click to expand...
The test you had done was most likely an HbA1C test which is an average of the blood glucose over the past 3 months and the result would be 79mmol/mol. I am very surprised that with the lifestyle changes you made that the level would have gone up to 138 mmol/mol which is extremely high and just metformin is probably not sufficient to bring it down. I wonder if the last result is erroneous as I would expect your fasting level to be a bit higher than it is. Note that the units that the result form the monitor is different from the HbA1C.
What foods are you having. About how may carbs per day?
Did you actually lose weight quite easily as with dietary changes not being effective that sends a red flag up that you may not be Type 2 but Type 1 or LADA.
 
I think there is a significant likelihood that you are Type 1 and not Type 2 from the information you have provided. That is a significant weight loss and whilst I appreciate that you were probably trying to lose weight, but to see your HbA1c increase so significantly despite your efforts and metformin and dramatic weight loss should be waving red flags at your nurse. You need to be asking why they think you are Type 2 and have they considered you might be Type 1??
Don't let them say that you are too old for type 1 or you are overweight so must be Type 2 because those are not valid reasons. Ask to be referred to a specialist diabetes clinic or at least be tested for Type 1. This would involve blood tests for GAD antibodies and C-peptide. Levels of 138 have been enough to get other people a trip to A&E so yes that is a dangerously high level and especially when it has gone up so significantly since diagnosis just a few months ago.

Have they given you some Ketostix to test your urine for Ketones, when your BG levels are persistently mid teens? Ketones are what make high BG levels really dangerous, because high levels of them can lead to your blood becoming toxic and causing organ damage if not treated and even coma and death in very extreme circumstances. I would hope that the nurse tested your urine for ketones at your appointment but she should also have given you a pot of strips for you to test at home. If not, you can often buy them over the counter at a pharmacy for about £5 for a pot of 50. They are not on the shelves so you would have to ask the pharmacist or ring around the local pharmacies to see if any have them rather than having to traipse around a few places before you source some.

Signs of Diabetic KetoAcidosis (DKA) caused by high BG levels and high ketones are the pear drop smell on your breath that you might have heard mentioned. Other symptoms are nausea/vomiting, abdominal pain or respiratory distress. If you have any of those symptoms, get yourself to A&E pronto.... ideally someone else driving you or ambulance. These are extreme circumstances and I am not saying this will happen to you but your high HbA1c suggests there is a risk of you developing DKA so being able to test ketone levels will help you to detect it early and get appropriate medical help.
 
Leadinglights said:
The test you had done was most likely an HbA1C test which is an average of the blood glucose over the past 3 months and the result would be 79mmol/mol. I am very surprised that with the lifestyle changes you made that the level would have gone up to 138 mmol/mol which is extremely high and just metformin is probably not sufficient to bring it down. I wonder if the last result is erroneous as I would expect your fasting level to be a bit higher than it is. Note that the units that the result form the monitor is different from the HbA1C.
What foods are you having. About how may carbs per day?
Did you actually lose weight quite easily as with dietary changes not being effective that sends a red flag up that you may not be Type 2 but Type 1 or LADA.
Click to expand...
Hi, Thank you for your response. I started a low carb diet and steadied my calorie intake to around 2000. The weight loss started simultaneously. I keep carbs to around 130 - 150g per day.
 
MalcBell said:
Hi, Thank you for your response. I started a low carb diet and steadied my calorie intake to around 2000. The weight loss started simultaneously. I keep carbs to around 130 - 150g per day.
Click to expand...
I do think you should consider the possibility of Type 1 or LADA. However you probably are on the upper end of what would be considered low carb which is suggested as being no more than 130g per day total carb not just sugar. So make sure you are looking at Total carbs in the nutritional information on packets etc.
May do find they need to go lower than the 130g. You could make use of your monitor and test your tolerance to the meals you are having by testing before you eat and after 2 hours aiming at no more than 2-3mmol/l increase.
 
rebrascora said:
I think there is a significant likelihood that you are Type 1 and not Type 2 from the information you have provided. That is a significant weight loss and whilst I appreciate that you were probably trying to lose weight, but to see your HbA1c increase so significantly despite your efforts and metformin and dramatic weight loss should be waving red flags at your nurse. You need to be asking why they think you are Type 2 and have they considered you might be Type 1??
Don't let them say that you are too old for type 1 or you are overweight so must be Type 2 because those are not valid reasons. Ask to be referred to a specialist diabetes clinic or at least be tested for Type 1. This would involve blood tests for GAD antibodies and C-peptide. Levels of 138 have been enough to get other people a trip to A&E so yes that is a dangerously high level and especially when it has gone up so significantly since diagnosis just a few months ago.

Have they given you some Ketostix to test your urine for Ketones, when your BG levels are persistently mid teens? Ketones are what make high BG levels really dangerous, because high levels of them can lead to your blood becoming toxic and causing organ damage if not treated and even coma and death in very extreme circumstances. I would hope that the nurse tested your urine for ketones at your appointment but she should also have given you a pot of strips for you to test at home. If not, you can often buy them over the counter at a pharmacy for about £5 for a pot of 50. They are not on the shelves so you would have to ask the pharmacist or ring around the local pharmacies to see if any have them rather than having to traipse around a few places before you source some.

Signs of Diabetic KetoAcidosis (DKA) caused by high BG levels and high ketones are the pear drop smell on your breath that you might have heard mentioned. Other symptoms are nausea/vomiting, abdominal pain or respiratory distress. If you have any of those symptoms, get yourself to A&E pronto.... ideally someone else driving you or ambulance. These are extreme circumstances and I am not saying this will happen to you but your high HbA1c suggests there is a risk of you developing DKA so being able to test ketone levels will help you to detect it early and get appropriate medical help.
Click to expand...
Thank you for your response. I do not have the symptoms you describe, thankfully. I will phone the nurse tomorrow and gain an understanding on how they are confident on the Type 2 diagnosis. They have requested a urine sample.
 
Hi @MalcBell and welcome to the forum. I agree with @rebrascora that it sounds as though you may have been misdiagnosed - adults with type 1 are often initially told they're type 2, especially if they are overweight when first diagnosed. You have done everything right for type 2 and though it is possible that you are type 2 and just need more type 2 meds and lower carbs, it sounds much more likely that you are type 1 - in which case the type 2 meds won't work and you need to be on insulin asap. The only way to find out is to get the tests done for type 1.

Here's a chart to give you an idea of how the HbA1c (the 138) relates to the results of 15 or 16 or so which you're getting at home. The top row in each section is the HbA1c, and the bottom rows show the equivalent in the type of results you're geting, which are in mmol/L (ignore the middle rows). As @Leadinglights says, the HbA1c shows what your blood sugar has been doing over the last 3 months - the results you're getting at home are spot tests which show what your blood sugar is doing at that precise moment.

Your results are right in the very dark red danger zone at the bottom - in fact this doesn't go up to 138 because it's so high it's off this chart. 15 or 16 mmol/L equate to an HbA1c over 100 though, which is much higher than you want. Mine was 103 when I was rushed to hospital with DKA.

The good news is that if it is type 1, with insulin you should be able to get it right back down again - mine's about 42 now, which is a bit higher than a non-diabetic but on the low side of healthy for a type 1. The bad news is you may have to push to get the tests done to find out, as most surgery nurses and GPs won't know much about type 1 as it's quite rare, so they do tend to assume type 2.

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Sorry to hear about your rapidly increased HbA1c @MalcBell - despite all the good work you have been putting in.

It does suggest there may be other things afoot, and perhaps you may not have straightforward T2.

Hope you can get a follow-up appointment and some further investigations like cPeptide or GAD antibody tests to try to shed some more light on things.
 
TheClockworkDodo said:
Hi @MalcBell and welcome to the forum. I agree with @rebrascora that it sounds as though you may have been misdiagnosed - adults with type 1 are often initially told they're type 2, especially if they are overweight when first diagnosed. You have done everything right for type 2 and though it is possible that you are type 2 and just need more type 2 meds and lower carbs, it sounds much more likely that you are type 1 - in which case the type 2 meds won't work and you need to be on insulin asap. The only way to find out is to get the tests done for type 1.

Here's a chart to give you an idea of how the HbA1c (the 138) relates to the results of 15 or 16 or so which you're getting at home. The top row in each section is the HbA1c, and the bottom rows show the equivalent in the type of results you're geting, which are in mmol/L (ignore the middle rows). As @Leadinglights says, the HbA1c shows what your blood sugar has been doing over the last 3 months - the results you're getting at home are spot tests which show what your blood sugar is doing at that precise moment.

Your results are right in the very dark red danger zone at the bottom - in fact this doesn't go up to 138 because it's so high it's off this chart. 15 or 16 mmol/L equate to an HbA1c over 100 though, which is much higher than you want. Mine was 103 when I was rushed to hospital with DKA.

The good news is that if it is type 1, with insulin you should be able to get it right back down again - mine's about 42 now, which is a bit higher than a non-diabetic but on the low side of healthy for a type 1. The bad news is you may have to push to get the tests done to find out, as most surgery nurses and GPs won't know much about type 1 as it's quite rare, so they do tend to assume type 2.
Click to expand...
Thank you for your detailed feedback. It is hugely appreciated and this chart was the elusive one and therefore I thank you again for posting it.
I contacted my doctor this morning and announced my fears of misdiagnosis and they jumped quickly and subsequently I have now provided them with a sample for testing for type 1.
 
Thank you all for your feedback and responses. They all mirrored each other pointing towards a misdiagnosis. I researched further into this and was shocked to read the high percentage of misdiagnosis of type 1 and 2.
I contacted my doctor this morning and have supplied a sample for testing to check further into the issue.
If this turns out to be type 1, all of you are worthy of my upmost respect and appreciation. If it is still type 2, I still retain the upmost respect and appreciation for your time and willingness to support and help others. Remarkable and humbling people. Xx
 
Glad the doctor is looking into it, @MalcBell and not just insisting you must be type 2.

When you say supplied a sample, do you mean urine or blood? They can test for ketones with urine, and that's the urgent thing, but to do the GAD antibody and/or C-Peptide tests for type 1 they'd need to do a blood test (and the results for those would take a while to get back so it would be worth your getting a pot of Ketostix and testing your own urine for ketones every now and then in the meanwhile).
 
TheClockworkDodo said:
Glad the doctor is looking into it, @MalcBell and not just insisting you must be type 2.

When you say supplied a sample, do you mean urine or blood? They can test for ketones with urine, and that's the urgent thing, but to do the GAD antibody and/or C-Peptide tests for type 1 they'd need to do a blood test (and the results for those would take a while to get back so it would be worth your getting a pot of Ketostix and testing your own urine for ketones every now and then in the meanwhile).
Click to expand...
Yes it was a urine test. OK so I need to make sure they do the other tests GAD antibody and /or C-Peptide. I will definitely take your advice. Thank you once again.
 
Yes, my concerns are the same as those of Juliet above. Yes it is important to check your urine for ketones and to keep testing them whilst your levels are high because ketones can develop quite suddenly, so please come away from the doctors with a pot of Ketostix so that you can continue to test at home. The absence of ketones in your urine at this time doesn't prove anything one way or another. You need specialist testing for GAD antibodies and a C-peptide to establish how much insulin you are able to make and ideally both should be done from blood tests. C-pep can be done on urine and is cheaper and easier but it is also not as reliable. Blood samples need to be taken at a hospital where the C-peptide samples can be frozen immediately and sent off to the lab frozen and most GP practices can't achieve that quick freezing and transit facility.
 
If you have ketones now at any sort of level they may send you straight off to hospital but if not then you need to push the GP to make an URGENT referral to consultant at the diabetes clinic so that the tests can be authorised there. Your GP does not have enough knowledge to sanction the tests and interpret the results.
 
PS. We only know this stuff because we have been there and got the T-shirt 🙄
 
Ideally i would be happier if you were sent home with some insulin and Ketostix since it is a weekend and a lot can happen in a couple of days or sent straight to hospital.
 
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