Hba1c and other conditions that effect blood sugar..

[becca19962014]

I'm wondering if the Hba1c takes into account other reasons for high blood sugar or is it literally just based on glucose in the blood over three months regardless (my understanding of this might be wrong!)

I've been told today that my hyperglaecemia attacks can be attributed to the UTIs I get - it's nothing to do with food as that's not changed at all. My diet is very bland and boring. Low carb made me feel really unwell as did the recommended diet (no sugar of any kind and no carbs) so I've done my own within reason and kept my BS at a level whereby I can function of about 6 (4 is what I was told to aim for but I feel very unwell and it drops rapidly if at 4). I'm being investigated for cushings as well which also causes blood sugar problems and another condition I have can effect it as well.

My concern is being given meds to lower blood sugar to 4 which will end up making me feel constantly ill. I've no one to help me and I wouldn't qualify for any kind of support given my readings when not ill with these conditions are within the range for "normal".

 

[Sally71]

HbA1c is glycated haemoglobin, which is basically a measure of how much glucose is stuck to your red blood cells, basically the higher your blood sugar has been on average over the last 3 months the more glucose will be stuck to your red blood cells and the higher the HbA1c. It makes no difference what caused the high blood sugar, and isn't a perfect measure because someone with blood sugars at an almost constant level could come out with the same HbA1c as someone who is swinging wildly between low and high.

Infections can indeed affect blood sugar levels, as can many other things, a level of 6 is perfectly within range though so I don't understand why you are being told that you need to be 4? Who has told you this? 4 is the very bottom of the acceptable range and if you are normally higher then you will probably feel hypo symptoms at this level (although your body would adjust and get used to it if you stayed at that level long enough). To be honest if I could keep my daughter's levels near 6 all the time I'd be doing cartwheels! (I hate the summer holidays, have to fight all the time to keep her in single figures and seem to get through gallons of insulin in the process )

 

[becca19962014]

Thanks sally that was what I thought about the test.

It was the diabetic nurse who told me the highest should be 4 after telling me I could easily get myself within the well range and not have diabetes anymore. However, I found even with the effort it took of getting it around 4 I felt really dizzy and unwell and my blood pressure would shoot up until it was higher - I did it for a few days but my other conditions went haywire meaning loss of consiousness amongst other things. It would get higher supposedly by itself but if I ate anything at all (e.g. A cracker it would shoot up). At the moment I'm getting 11 and 12 though NHS direct and the gp yesterday said that's fine, nowhere near enough to cause symptoms and shouldn't make me feel ill (even thought it did) and after being told it should be 4 I was really worried.

I'm wondering now though about my other conditions effecting my blood sugar, as obviously when unwell and I have been really unwell due to the weather, though my diet has been the same, maybe if they were better controlled I'd feel a lot better generally with my blood sugar.

Along with everything else I cannot face another lecture about being disgusting and not trying right now. It may have the opposite effect and I'll stop trying. It's costing me a fortune as I don't have the option of home shopping or a big supermarket and affordable foods tend to be very high in sugar, or as I'm not finding artificial sweeteners (which I've found make my blood sugars go very high). I've also got andrenal problems which causes artificially raised blood sugars but I don't know how extra meds would sort that out without making me unwell. They're assuming I'm eating sweets and chocolate and cakes which I'm not and it's very upsetting, I'm wondering if these conditions are why.

 

[Radders]

Thanks sally that was what I thought about the test.

It was the diabetic nurse who told me the highest should be 4 after telling me I could easily get myself within the well range and not have diabetes anymore. However, I found even with the effort it took of getting it around 4 I felt really dizzy and unwell and my blood pressure would shoot up until it was higher - I did it for a few days but my other conditions went haywire meaning loss of consiousness amongst other things. It would get higher supposedly by itself but if I ate anything at all (e.g. A cracker it would shoot up). At the moment I'm getting 11 and 12 though NHS direct and the gp yesterday said that's fine, nowhere near enough to cause symptoms and shouldn't make me feel ill (even thought it did) and after being told it should be 4 I was really worried.

I'm wondering now though about my other conditions effecting my blood sugar, as obviously when unwell and I have been really unwell due to the weather, though my diet has been the same, maybe if they were better controlled I'd feel a lot better generally with my blood sugar.

Along with everything else I cannot face another lecture about being disgusting and not trying right now. It may have the opposite effect and I'll stop trying. It's costing me a fortune as I don't have the option of home shopping or a big supermarket and affordable foods tend to be very high in sugar, or as I'm not finding artificial sweeteners (which I've found make my blood sugars go very high). I've also got andrenal problems which causes artificially raised blood sugars but I don't know how extra meds would sort that out without making me unwell. They're assuming I'm eating sweets and chocolate and cakes which I'm not and it's very upsetting, I'm wondering if these conditions are why.

I am really shocked that anyone would tell you that 4 is the highest you should be. That’s just rubbish. I would ignore that and carry on as you were.
I’m also annoyed on your behalf that they are not believing you when you tell them what you eat and if I could I would be looking for a new team. Is this a nurse at a gp surgery by any chance? If so and she is still making you feel that it’s your fault then I suggest a formal letter of complaint might be in order. They need to know the impact of their behaviour on patients.
I hope you are able to find the help you need.

 

[ukjohn]

I am beginning to lose all faith in the medical profession when it comes to diabetic advice, I think they make up their own standards. My Hba1c came in at 43 (6.1%) and I got a phone call from the nurse practitioner telling me it was to low and I must be using to much insulin.

John.

 

[Radders]

I am beginning to lose all faith in the medical profession when it comes to diabetic advice, I think they make up their own standards. My Hba1c came in at 43 (6.1%) and I got a phone call from the nurse practitioner telling me it was to low and I must be using to much insulin.

John.

That’s mad! I thought the NHS guidelines said between 6 and 7?

 

[Sally71]

I agree with @Radders - no properly trained diabetic nurse would ever tell you that the highest you should be would be 4 - that would mean that you would be permanently hypoglycaemic which is not good for you either! Getting a low HbA1c by being hypo all the time is not how to do it, especially if you have other medical issues which might be making it harder for you. Some people try everything and can't get down to normal levels no matter how hard they try, as long as you know you have done your absolute best and can't possibly do any more then there is nothing to be ashamed of. If you can keep your levels around 6 most of the time then you are doing pretty well in my book! Keep going as you are, and start looking for a new diabetes team, you don't have to stick with the one you have, especially as they seem to not have much clue about it!

 

[becca19962014]

Thankyou all for being so lovely!

It was the diabetic nurse in the hospital. The one in the GP practice also told me it was all my fault and I wasn't trying hard enough and the diet was not only almost impossible to keep to but made me really unwell, she claimed that meant it was working - it was no carbs and no sugar (including fruit) and my BS was in hypo it was actually people here who helped me to work out my own diet within my needs and that sugar wasn't the enemy (within reason obviously!)

I do my best with the needs I have but obviously now have other challenges to my BS as well as food which I cannot control.

I can't change nurses because there aren't any other options. The attitude is definitely one of type 2 = patients fault and easily curable with effort. It's very hurtful and I'm struggling to get another test done as I can't cope with the "it's your fault" attitude. I've even had newspaper articles given to me proving I can cure myself if I try hard enough to control my eating. My disability effects my hands so cooking from fresh is very hard - but that's ignored by diabetes team as they say it's not part of what they do,

 

[becca19962014]

I was told hypos don't do any damage.

 

[Radders]

Thankyou all for being so lovely!

It was the diabetic nurse in the hospital. The one in the GP practice also told me it was all my fault and I wasn't trying hard enough and the diet was not only almost impossible to keep to but made me really unwell, she claimed that meant it was working - it was no carbs and no sugar (including fruit) and my BS was in hypo it was actually people here who helped me to work out my own diet within my needs and that sugar wasn't the enemy (within reason obviously!)

I do my best with the needs I have but obviously now have other challenges to my BS as well as food which I cannot control.

I can't change nurses because there aren't any other options. The attitude is definitely one of type 2 = patients fault and easily curable with effort. It's very hurtful and I'm struggling to get another test done as I can't cope with the "it's your fault" attitude. I've even had newspaper articles given to me proving I can cure myself if I try hard enough to control my eating. My disability effects my hands so cooking from fresh is very hard - but that's ignored by diabetes team as they say it's not part of what they do,

In that case I think they need to be told how the way they are speaking to you is making you feel. Can you either write a letter or make an appointment and take someone with you to support you in doing this? They should be working in partnership with you not talking down to you or lecturing you.
I would also definitely bring up this business of the less than 4 comment as it’s dangerous.

 

[Radders]

I was told hypos don't do any damage.

What meds are you on? It depends a bit on how hypo you mean. If it’s the symptoms of what’s called a false hypo then I believe that it’s true that these are not dangerous but a full blown hypo certainly can be especially if you’re doing something that requires full concentration at the time!

 

[becca19962014]

I'm on metformin and was told it's impossible to have low blood sugars on it but I have, especially when I was on their recommended diet. my lowest reading was 2.5 and I felt very ill - it really impacted my other conditions as well, one of which is losing consiousness. 4 means I'm sweaty and struggling to function - so concentrate/seeing properly (though I've discovered I've sight problems due to another condition anyway).

I live alone and have no way to get help when in serious difficulty with hypos or hyper problems like yesterday i was really struggling with the reading I had yet was told it didn't matter and wasn't really a hyper reading as those are usually much much higher.

I don't know anything about a false hypo but the symptoms I get around 4 I need to take action to prevent loss of consiousness and it possibly getting worse.

 

[becca19962014]

I did complain about how I was treated in hospital but the hospital ignored me and the ombudsman said I didn't have a witness so they couldn't make them look into it. Same thing happened with the practice. I've no one to go with me - the two who offered work.

 

[Eddy Edson]

I'm just a newbie here but it sounds like you're getting *really* bad advice from yr health providers.

Can Diabetes UK do anything about getting these people spanked & (more urgently) getting you access to better people?

 

[Radders]

I did complain about how I was treated in hospital but the hospital ignored me and the ombudsman said I didn't have a witness so they couldn't make them look into it. Same thing happened with the practice. I've no one to go with me - the two who offered work.

It’s good that your complaint is on file though as it should raise the alarm if anyone else complains. I’m sorry to hear you haven’t got anyone but maybe one of the two people wouldn’t mind taking a half day for a friend?

 

[becca19962014]

Unfortunately it's not as simple as sounds due to their circumstances. If there was a way to guarantee I'd be seen on time and by someone knowledgable about all my conditions then it would be ok but of course that's not possible and clinics here can run two plus hours over (rural, practices closing whilst more and more people are moving here) and anyone I see needs to speak to others who say also be late... We have tried in the past but they've needed to leave before I was seen. Totally not their fault and I felt awful for them wasting half a days leave on me they may need for other things - they didn't blame me and I got them a thankyou card for trying.

Today i found out a good friend who has type 2 (and is housebound) has decided to abandon her treatment after seeing the diabetic team who had a go at her for not trying hard enough and all the things that are going to happen if she doesn't try so now she's back drinking orange juice by the litre and eating haribo and all her other bad habits - everything she spent a year stopping and helping herself (I know her daily sugars went from 25 down to 15) she's now back doing them all simply because of that appointment. I don't see how they thought that would help her. It helps anyone, surely that attitude will make people more likely to turn around and go "where's the point if it'll happen anyway" why not say well done and encourage? Am I missing something??

 

[trophywench]

Well to be fair - 25 for any length of time will kill you, whereas 15 is still going to kill you but slower.

I cannot believe a medically trained person has told you that hypos - proper hypos below 4 - will not do any damage. It is true that the lowest you can 'normally' go is 3.3 but it is completely proven that anything under that exact number absolutely affects the person's brain and spend any time down at that level will cause brain damage. These are medical facts and you can't argue with facts !

 

[Brando77]

I am beginning to lose all faith in the medical profession when it comes to diabetic advice, I think they make up their own standards. My Hba1c came in at 43 (6.1%) and I got a phone call from the nurse practitioner telling me it was to low and I must be using to much insulin.

John.

The Nurse must be getting high on her own supply to say that. What's going on with these people? Seems like they haven't had any further education since 1978.

 

[becca19962014]

Jenny whilst that's true, the fact is she'd begun to get a handle on it and was (with the odd exception) consistently bringing her numbers down - she was really proud. That was what I meant not that 15 was acceptable. I don't understand why they couldn't be encouraging her afterall that required major changes instead of telling her she wasn't trying hard enough - because she struggled so much with it. I'm sure even a little recognition of that work (she's had t2 for almost 30 years and not changed her diet) she could have got it down lower.

Now she's not bothering because it's not worth the effort so they're back where they were because she says it not worth the effort to just die/lose limbs anyway. For some context - her daughter died recently and shes fighting cancer that recently spread so to have done that with her blood sugars for her was a massive deal, but now she doesn't see any point, it's sad.

Regarding the hypos yes I've been told there's no such thing as a dangerous low level, I was given breathing techniques to do as they said the side effects were just me being panicky. Luckily I registered here and got some good advice and have used the helpline as well. But I wonder how many people they say that to and it's wrong. The diet was what caused it - telling me not to eat anything except main meals four hours apart was really bad advice as well as the food. Likewise that metformin means you cannot have hypos and I shouldn't test my blood sugar on it - I do and that's been really helpful for me, I wonder how many would take that advice though.

 

[becca19962014]

Brando, I'm wondering if some have had any training never mind 1978!!