Do I have diabetes or not?

[rosserk]

Yes I've worked all my life, I've never claimed any benefits, I pay for my prescriptions, but that doesn't seem to matter. Because I'm not on insulin I can't get the strips

Best not get sick then eh?

 

[rosserk]

Hi everyone, I still haven't been diagnosed as being diabetic. I'm still keeping an eye on my blood sugars and I have managed to bring them down slightly by lowering my carbs. However from what I'm reading they are still not within what is defined as the 'normal' range for a non diabetic, which is what my doctor insists I am based on my A1c results. My doctor has told me not to test and because I'm not overweight he's advised me to carry on as normal and not bother making any changes to my diet. From what I have read and all the advice I've been given a normal person will never or seldom have postprandial readings above 7.8 and the body will regulate the blood sugars in a very short space of time back to within what is defined as the normal range (not sure what is defined as short space of time) This isn't the case with my blood sugars which always rise after eating and at two hours are seldom below 10 - 12.5, although they start to come back down by three hours they are still well above 'normal' after three hours. Can this be classed as normal for a non diabetic? I'm sorry to appear dumb and I realise that to some of you that may be a stupid question but if the A1c test measures average blood sugars over a previous three months then my blood sugars would only be above the normal range for perhaps 6 hours a day (for two hours after each meal). I'm concerned that when my blood sugars are elevated that damage is occurring to organs within the body but my doctor is insistent it isn't in my case.
I have been diagnosed as having peripheral neuropathy in both my hands but my consultant is not sure of the cause, both my thumbs are sublaxed and dislocate during normal movement and I have muscle wasting of the Thenar and Hyperthenar muscles as well as muscle wasting in both my forearms. Neither my doctor or my Consultant have ever made any connection to high blood sugars being a possible cause. What I don't understand is why I can't find any information on 'non diabetic' blood sugar ranges climbing above 10 after every meal and still being classed as normal for a non diabetic. Could my high numbers be pre-diabetic ranges and if so shouldn't I be eligible for help and guidance from the NHS to prevent future problems? I have a Contour Next USB meter, which comes with approved software and according to the analysis of my readings my blood sugars are above normal 43% of the time, which is obviously causing me some worry.

 

[Rillum]

The problem is that hba1c has superseded all the old tests in the minds of doctors. It's not supposed to be the only way to be diagnosed as diabetic, but de facto it is. If you can, you should pay yourself for an oral glucose tolerance test. It would surely class you as diabetic.

 

[tim2000s]

In my opinion you are wing let down by your GP. Your post prandial glucose levels are consistently way higher than a non-diabetic and if they are taking more than 3hours to return to normal I'm surprised your hba1c is showing as normal!
I agree with the opinion regarding getting an oral glucose test done.

 

[Bluetit1802]

I also think you should have an oral glucose test, or at least another HbA1c. I am a type 2 diabetic but even soon after diagnosis and before I stated a low carb diet properly I rarely saw anything much above 9 after an hour, or 8 after 2 hours, and always back in the 6's at 2.5 hours. Your post meal levels do indicate a problem somewhere.

 

[Eurobuff]

I also think you should have an oral glucose test, or at least another HbA1c. I am a type 2 diabetic but even soon after diagnosis and before I stated a low carb diet properly I rarely saw anything much above 9 after an hour, or 8 after 2 hours, and always back in the 6's at 2.5 hours. Your post meal levels do indicate a problem somewhere.

Before I was officially diabetic (had healthy heart check and was told they needed to redo a blood test-turned out to be another hba1C) I tested my BG 2 hours after my tea/dinner and it was 12.9 - I had eaten apple pie & ice cream for dessert though! My pre meal BG was 6. My hba1c came back as 7.8 (first one was 7.9) which I was told was established diabetic (not pre). I think there is something wrong, but I would have thought you hba1c would have come back higher as your BG trend seems to be similar to how mine was.

 

[NoCrbs4Me]

Unfortunately, one could have non-diabetic results in 2 of the 3 tests, but just one positive result of the three means you are diabetic. i.e. even with normal fasting and normal HbA1c, one could still be type 2 diabetic, although I think this is uncommon.

 

[rosserk]

Thank you everyone for taking the time to respond to my post. I do however need to correct my previous post which didn't occur to me until my husband pointed it out. I don't usually eat three meals a day, only occasionally will I ever eat at lunch time, I usually only eat twice a day. I typically eat between 10 and 11 when I have breakfast and then again at 6 when I have my evening meal, sometimes I will have a snack in the afternoons but rarely. I do eat sometimes because I feel nauseous, really hot and clammy and get really bad headaches and only seem to recover if I eat a snack and lay down for a while. Is it possible that only eating twice a day could be impacting on the HbA1c test? My Blood sugars 'are' elevated for up to 6 hours a day because they usually always take up to three hours to come down after I eat but I expect if I started eating lunch as well that might bring the average up? Today I had dinner at 6:00pm and one hour later at 7pm my BS was 10.7, at 8:15pm they were 9.2 which is pretty typical.

 

[rosserk]

I also think you should have an oral glucose test, or at least another HbA1c. I am a type 2 diabetic but even soon after diagnosis and before I stated a low carb diet properly I rarely saw anything much above 9 after an hour, or 8 after 2 hours, and always back in the 6's at 2.5 hours. Your post meal levels do indicate a problem somewhere.

I am opposite to you I rarely ever see a 9 one hour after eating mine are always higher than that which makes absolutely no sense to me, because I have started cutting down on the carbs and I am very disciplined. I was expecting people diagnosed as having diabetes to be quoting highs of way above 12 after an hour. I really don't understand what's happening but I am extremely worried about it. The thing that's really getting me down at the moment is I have started waking in the early hours of the morning between 3 and 4 am. I am drenched in sweat and have an unbelievable thirst, I nearly always wake with a headache the following day. This has started happening more frequently and is now almost every night and I always need the loo! I'm also not very steady on my feet and generally feel really poorly and completely drained of energy a bit like being drunk if that makes sense? Have you ever experienced anything similar?

 

[rosserk]

The problem is that hba1c has superseded all the old tests in the minds of doctors. It's not supposed to be the only way to be diagnosed as diabetic, but de facto it is. If you can, you should pay yourself for an oral glucose tolerance test. It would surely class you as diabetic.

Hi, I have had to pay to see a private consultant about the neuropathy in my hands and forearms and I'm currently out of work so not sure I can fund it at the moment. I am seeing the consultant on Thursday and I'm going to take a printout of the readings with me and specifically ask if there is a possibility that my high blood sugars could have caused or could make the neuropathy worse. What exactly do you have to drink for this test, is it lucazade?

 

[Eurobuff]

Thank you everyone for taking the time to respond to my post. I do however need to correct my previous post which didn't occur to me until my husband pointed it out. I don't usually eat three meals a day, only occasionally will I ever eat at lunch time, I usually only eat twice a day. I typically eat between 10 and 11 when I have breakfast and then again at 6 when I have my evening meal, sometimes I will have a snack in the afternoons but rarely. I do eat sometimes because I feel nauseous, really hot and clammy and get really bad headaches and only seem to recover if I eat a snack and lay down for a while. Is it possible that only eating twice a day could be impacting on the HbA1c test? My Blood sugars 'are' elevated for up to 6 hours a day because they usually always take up to three hours to come down after I eat but I expect if I started eating lunch as well that might bring the average up? Today I had dinner at 6:00pm and one hour later at 7pm my BS was 10.7, at 8:15pm they were 9.2 which is pretty typical.

I would think that because of the way you're eating (eg eating fewer meals) that could be why your hba1c is not showing as diabetic. I would think if you were to eat 3 or 4 meals a day your hba1c would go up and may show as diabetic?

 

[Eurobuff]

I am opposite to you I rarely ever see a 9 one hour after eating mine are always higher than that which makes absolutely no sense to me, because I have started cutting down on the carbs and I am very disciplined. I was expecting people diagnosed as having diabetes to be quoting highs of way above 12 after an hour. I really don't understand what's happening but I am extremely worried about it. The thing that's really getting me down at the moment is I have started waking in the early hours of the morning between 3 and 4 am. I am drenched in sweat and have an unbelievable thirst, I nearly always wake with a headache the following day. This has started happening more frequently and is now almost every night and I always need the loo! I'm also not very steady on my feet and generally feel really poorly and completely drained of energy a bit like being drunk if that makes sense? Have you ever experienced anything similar?

That sounds like high blood sugar symptoms, not sure about the sweating though? You do sweat if you're in Ketosis (not to be confused with ketoacidosis) which if you've cut the carbs out drastically could be possible, I went through that but after about an hour or two of the sweats I then felt fantastically healthy and on top of the world.

 

[rosserk]

That sounds like high blood sugar symptoms, not sure about the sweating though? You do sweat if you're in Ketosis (not to be confused with ketoacidosis) which if you've cut the carbs out drastically could be possible, I went through that but after about an hour or two of the sweats I then felt fantastically healthy and on top of the world.

That makes sense! I also have periods of feeling fantastic afterwards and my energy levels are through the roof, which makes me think there can't be anything wrong because I feel so well, but then it happens again the following night. I find it very confusing because I seem to be surviving on very little sleep. I don't tend to fall asleep until the early hours 1 or 2 am some times later and then I'm awake early in the mornings. I have gone from someone who once needed 8 - 9 hours sleep to someone who exists on 4-5. When I wake in the early hours (between 3-4 am) I feel completely exhausted, I fall back asleep and I'm awake again between 6 and 8 full of energy. The problem is I keep convincing myself there's nothing wrong with me then I get a new symptom and I'm worrying all over again. I have read about something called the Dawn Phenomenon which mentions blood sugars rising in response to them dropping too low. I have tested mine before bed and they are always higher in the mornings than the night before, which is confusing. What makes your blood sugar drop when your sleeping surely if it's 4.3 when you go to sleep it should remain at that level until you wake? Sorry if that's a daft question I'm just trying to understand it, from what I've read BS don't drop unless you're on medication or insulin?

 

[rosserk]

I would think that because of the way you're eating (eg eating fewer meals) that could be why your hba1c is not showing as diabetic. I would think if you were to eat 3 or 4 meals a day your hba1c would go up and may show as diabetic?

Why would someone eat 4 meals a day, I could never do that, I'm not a big eater but I'm not under weight or anything, I would say I was a good eater though, I like my meat and veg, not really into eating sweet things, chocolate, biscuits or cakes though and I would never eat chocolate I don't like it! Although I have cut down on the carbs, fries and potatoes I'm not going without completely.

 

[Indy51]

As mentioned previously, there are reasons that the A1c does not work accurately for some people:

http://chriskresser.com/why-hemoglobin-a1c-is-not-a-reliable-marker/

You would be wise to request a fructosamine test instead of an A1c:

https://labtestsonline.org/understanding/analytes/fructosamine/tab/test/

 

[ladybird64]

I'm going to go out on a complete limb here and hope you see that I'm coming at this from a caring standpoint. And before anybody shoots me down, I don't come here much nowadays but posted regularly in the past, and I'm also someone that has anxiety issues.

Rosserk, I can see that you have been through a very bad trauma. This is often the trigger for something that, although I don't have myself, know a good bit about it - it's called Health Anxiety. I can't give a reason for the high levels of your readings but my guess is a fault on the meter somewhere. Nor am I saying that the HbA1c is the be all and end all of tests, it isn't. But I know many, many people with health anxiety and the one thing they all do is fixate on physical "symptoms" and obsess over them, reading up every little detail on the internet and often trying to make their symptoms fit whatever illness they think they have. Constant reassurance doesn't help, in fact it makes things much worse as it feeds the anxiety - there is also a very real reluctance or sometimes complete refusal to accept that they don't have the particular illness they are worried about.

I don't confess to know about Pancreatitis or some of the other, rarer blood sugar issues that some here have but having read this right through, it looks familiar to me. That you have got it into your mind that diabetes has to be a certain way, ie blood sugars over 12, and you are struggling when people are telling you that's not the case. Also the advice you have been given, which for the majority of us, is what makes the biggest difference to our sugar levels ie change to diet, you are reluctant to really take on board, placing the most emphasis on a "official" diagnosis. Metformin does not drop sugar levels dramatically, it doesn't work that way but you seem to have grabbed onto that, insisting that they made the big difference which is another pointer towards you feeling you need to be diagnosed.

I am aware I could well be wrong and I'm prepared to take the flak for that as my intentions are good but I think it's important that both you, and those advising you, realise that it's a very real possibility. And if anything I have said has resonated with you, maybe you spend all the spare time you have looking up Diabetes related info, googling symptoms, ie the unusual sleeping pattern and night sweats, the exhaustion - this could be just as much the symptoms of Health Anxiety as it could diabetes. I'm not saying you're making it up but most of these symptoms are very typical of a highly agitated and anxious state too. Maybe give some thought to what I've written and if any of it hits a nerve, then maybe think about how to tackle it, for instance getting a test done at your pharmacy- and if that says no diabetes, then work on getting help for anxiety. HA is really an awful thing to have to live with and I have seen many people, of all ages, caught in it's grip- for years on end. Diabetes is not easy either but you have had plenty of good advice as to what you need to do if you do happen to have it. And I'm sure you could get that pharmacy test if you really wanted to.

Wishing you good luck with everything.

 

[rosserk]

As mentioned previously, there are reasons that the A1c does not work accurately for some people:

http://chriskresser.com/why-hemoglobin-a1c-is-not-a-reliable-marker/

You would be wise to request a fructosamine test instead of an A1c:

https://labtestsonline.org/understanding/analytes/fructosamine/tab/test/

Hi, thank you, I've read the link and I'm sorry I'm going over old ground I'm just at a total loss what to do. My Doctor has refused me any alternative tests, he has categorically stated the A1c test was normal and he won't request any further tests. He even wrote on my notes that he has told me I do not have diabetes and that I remain unconvinced. He absolutely refused to look at the printouts of my blood sugar readings. I can't make him order any tests and if I go to another Doctor in the practice the first thing they will see is that comment on my notes. I feel like I'm going nuts! I take on board everything people on the forum have told me and I'm not ignoring anyones advice, it's just not that easy to force a Doctor to change an opinion he's absolutely convinced is correct. In the area I live in its difficult to get into a practice. If I try and change practices I could find myself without a Doctor and left using the local drop in centres where they definately won't order any tests. I'm in a no win scenario waiting to get sicker so someone will actually do something to help me and at the moment the only people I can ask for advice are on this forum. I've lowered my carbs as advised but though that worked for a while I'm now seeing higher post meal readings than I was before so I can only assume I'm getting worse. I'm conscious people are getting frustrated with me but not sure anyone could honestly say they've had a similar experience. For example my Doctor told me that if you eat cereal for breakfast it's no wonder your blood sugars spike afterwards, but then I read that if you're a non diabetic blood sugars will never exceed 7.8 no matter how many carbs you eat and the body will restore them to normal range in a very short space of time. I told my Doctor what I had read and he said stop reading things on the Internet because what I had read was wrong! I'm stuck between the Rock and the Hard Place going out of my mind...

 

[rosserk]

I'm going to go out on a complete limb here and hope you see that I'm coming at this from a caring standpoint. And before anybody shoots me down, I don't come here much nowadays but posted regularly in the past, and I'm also someone that has anxiety issues.

Rosserk, I can see that you have been through a very bad trauma. This is often the trigger for something that, although I don't have myself, know a good bit about it - it's called Health Anxiety. I can't give a reason for the high levels of your readings but my guess is a fault on the meter somewhere. Nor am I saying that the HbA1c is the be all and end all of tests, it isn't. But I know many, many people with health anxiety and the one thing they all do is fixate on physical "symptoms" and obsess over them, reading up every little detail on the internet and often trying to make their symptoms fit whatever illness they think they have. Constant reassurance doesn't help, in fact it makes things much worse as it feeds the anxiety - there is also a very real reluctance or sometimes complete refusal to accept that they don't have the particular illness they are worried about.

I don't confess to know about Pancreatitis or some of the other, rarer blood sugar issues that some here have but having read this right through, it looks familiar to me. That you have got it into your mind that diabetes has to be a certain way, ie blood sugars over 12, and you are struggling when people are telling you that's not the case. Also the advice you have been given, which for the majority of us, is what makes the biggest difference to our sugar levels ie change to diet, you are reluctant to really take on board, placing the most emphasis on a "official" diagnosis. Metformin does not drop sugar levels dramatically, it doesn't work that way but you seem to have grabbed onto that, insisting that they made the big difference which is another pointer towards you feeling you need to be diagnosed.

I am aware I could well be wrong and I'm prepared to take the flak for that as my intentions are good but I think it's important that both you, and those advising you, realise that it's a very real possibility. And if anything I have said has resonated with you, maybe you spend all the spare time you have looking up Diabetes related info, googling symptoms, ie the unusual sleeping pattern and night sweats, the exhaustion - this could be just as much the symptoms of Health Anxiety as it could diabetes. I'm not saying you're making it up but most of these symptoms are very typical of a highly agitated and anxious state too. Maybe give some thought to what I've written and if any of it hits a nerve, then maybe think about how to tackle it, for instance getting a test done at your pharmacy- and if that says no diabetes, then work on getting help for anxiety. HA is really an awful thing to have to live with and I have seen many people, of all ages, caught in it's grip- for years on end. Diabetes is not easy either but you have had plenty of good advice as to what you need to do if you do happen to have it. And I'm sure you could get that pharmacy test if you really wanted to.

Wishing you good luck with everything.

Hi thank you and I'm not offended and you absolutely have the anxiety thing right! I am totally fixated and read absolutely everything I can find on the Internet. You may be right and when and if I ever get things sorted I will let you know if you were right. Not sure your response won't stop me posting again though, it's precisly the reason why I think my Doctor won't order any more tests, because he thinks as you do. Which means I will have no where to go for help and I really will be alone.

I bought the Accu Chek meter and someone else suggested the meter could be wrong so I now have the Contour Next USB which is reportedly one of the most accurate meters on the market. I should have stuck with the Accu Chek because the readings were marginally better. I can publish the readings off the meter if you'd like to see them? I don't know if you've read the entire thread but in case you haven't my sister died in January from pancreatic cancer, she was type one before she died. Her Consultant told her she had likely been a diabetic for a number of years without realising it. I don't want to have diabetes and yes I'm still traumatised but the readings are not a figment of my imagination and I certainly haven't made them up. I am also fully aware of everything you have said and I've told myself the same a 100 times over, hence the long delay in my posts aware that others were thinking the same. I also think my doctor thinks exactly the same as you, I'm traumatised by the death of my sister and this is all in my imagination. If someone can tell me 100% my readings are normal I promise you I'm done I have lots of other things I can worry about. Do normal people have post meal readings above 10 one hour after every meal, if so then I absolutely apologise for wasting people's time.

 

[rosserk]

I'm going to go out on a complete limb here and hope you see that I'm coming at this from a caring standpoint. And before anybody shoots me down, I don't come here much nowadays but posted regularly in the past, and I'm also someone that has anxiety issues.

Rosserk, I can see that you have been through a very bad trauma. This is often the trigger for something that, although I don't have myself, know a good bit about it - it's called Health Anxiety. I can't give a reason for the high levels of your readings but my guess is a fault on the meter somewhere. Nor am I saying that the HbA1c is the be all and end all of tests, it isn't. But I know many, many people with health anxiety and the one thing they all do is fixate on physical "symptoms" and obsess over them, reading up every little detail on the internet and often trying to make their symptoms fit whatever illness they think they have. Constant reassurance doesn't help, in fact it makes things much worse as it feeds the anxiety - there is also a very real reluctance or sometimes complete refusal to accept that they don't have the particular illness they are worried about.

I don't confess to know about Pancreatitis or some of the other, rarer blood sugar issues that some here have but having read this right through, it looks familiar to me. That you have got it into your mind that diabetes has to be a certain way, ie blood sugars over 12, and you are struggling when people are telling you that's not the case. Also the advice you have been given, which for the majority of us, is what makes the biggest difference to our sugar levels ie change to diet, you are reluctant to really take on board, placing the most emphasis on a "official" diagnosis. Metformin does not drop sugar levels dramatically, it doesn't work that way but you seem to have grabbed onto that, insisting that they made the big difference which is another pointer towards you feeling you need to be diagnosed.

I am aware I could well be wrong and I'm prepared to take the flak for that as my intentions are good but I think it's important that both you, and those advising you, realise that it's a very real possibility. And if anything I have said has resonated with you, maybe you spend all the spare time you have looking up Diabetes related info, googling symptoms, ie the unusual sleeping pattern and night sweats, the exhaustion - this could be just as much the symptoms of Health Anxiety as it could diabetes. I'm not saying you're making it up but most of these symptoms are very typical of a highly agitated and anxious state too. Maybe give some thought to what I've written and if any of it hits a nerve, then maybe think about how to tackle it, for instance getting a test done at your pharmacy- and if that says no diabetes, then work on getting help for anxiety. HA is really an awful thing to have to live with and I have seen many people, of all ages, caught in it's grip- for years on end. Diabetes is not easy either but you have had plenty of good advice as to what you need to do if you do happen to have it. And I'm sure you could get that pharmacy test if you really wanted to.

Wishing you good luck with everything.

Sorry I forgot to say I went to my pharmacy, they said they don't test and to go back to my doctor. I have done everything I've been advised to do by the forum members.

 

[Bluetit1802]

Just to cover the point about meters. All meters have to pass a test before they can be marketed, and have to fall within a certain tolerance level for accuracy, which in the UK is currently plus or minus 15%. Some meters are better than others for the things you can do with them, for convenience, etc. but there is very little difference between them as far as accuracy is concerned. With the testing strips you will always find the odd rogue ones, and you will always see an odd rogue reading. You will also see rogue readings through human error, such as not washing and drying your hands properly, or keeping the meter and strips in an unsuitable environment such as a bathroom (too much humidity), but on the whole these rogue readings are rare. As long as they are within 15% of the true reading, they are acceptable.