puzzled !

[jshire]

Hi,

hope you don't mind me asking this here. I'll try to be brief. I've had severe fatigue & odd buzzing sensations in my legs for a couple of years. Although my doc has sent me for liver scans & to other specialists to investigate possible ME / Fibromyalgia & i've had several blood tests over the months nothing as yet has been diagnosed. I've only had one fasting blood test right at the start of investigations. I've had to really push to get my doc to investigate & to be honest i've begun to get rather frustrated as he's basically said he doesn't know what else he can do. After doing lots of research I mentioned peripheral neuropathy to him & more or less demanded he refer me to see a neurologist. I know PN can be caused by diabetes but there's also a chance that for me it might have been caused (if I have it at all) by exposure to chemicals that i've used in my work over the years. Over the last few months i've done so much reading on the various possible causes & in doing so i've kept returning to the possibility of diabetes. My fatigue tends to be really tricky in the am & slightly improved as the day goes on. I'm not experienced or knowledgable enough to accurately work out whether this is caused by peeks & troughs in sugar levels etc. Anyway I saw my doctor again recently & I again asked if there's any chance I have diabetes or even prediabetes, especially after being advised to do so by folks involved in the peripheral neuropathy community. He was a bit frustrated (I assume because its a bit like i'm saying he's missed something etc) & told me that my HbA1c level was ok & was 36. I've looked online & it seems a bit confusing as some websites say that a score of 36 = 6 or 6.1% & then some also say that that indicates prediabetes whilst other websites say that 36 is a normal & nothing to worry about. So i'm rather confused. If anyone on here can shed any light on HbA1c levels for normal & for prediabetes it'd be appreciated.

Given the severity of my symptoms (have gone from being reasonably active to sofa bound for lots of the time in the space of a year - not for want of trying to keep active) I kind of feel like my doc should be more pro-active in exploring what's going on & on this HbA1c level thing i'm left wondering if he's really considering prediabetes or views the results as nothing to worry about incorrectly.

thanks.

 

[rosserk]

You could buy a blood monitoring system and test your levels before and after food to see the effects your food is having on your blood sugars. If they are high you can record them and take them to your doctor for an explaination if they are inside the normal ranges you can rule out diabetes and look at other causes of your symptoms.
Hope you start feeling better soon.

 

[Bluetit1802]

For an HbA1c test, the figures are:

Non-diabetic under 42.
Pre-diabetic 42 to 47
Diabetic 48 and over.

So you are well within the normal non-diabetic range.

 

[jshire]

For an HbA1c test, the figures are:

Non-diabetic under 42.
Pre-diabetic 42 to 47
Diabetic 48 and over.

So you are well within the normal non-diabetic range.

thanks - this is what I find puzzling: all the websites i've looked at do indeed say a score of 36 is in the normal non-diabetic range, however if you convert 36 into the % figure that some websites use it comes out at 6 or 6.1% which is in the pre-diabetes range ! its really confusing.

 

[Bluetit1802]

thanks - this is what I find puzzling: all the websites i've looked at do indeed say a score of 36 is in the normal non-diabetic range, however if you convert 36 into the % figure that some websites use it comes out at 6 or 6.1% which is in the pre-diabetes range ! its really confusing.

No. An HbA1c of 36 is equivalent to 5.4%, and equates to 6.1mmol/l. The 6.1mmol/l is a different type of measurement unit, and is the one used in the UK on finger prick tests and fasting blood glucose tests. You have to remember that an HbA1c is an AVERAGE of your blood glucose levels over the previous 2 to 3 months (weighted towards the end of that period) An average of 6.1mmol/l is excellent and most definitely not in the prediabetes range.

I think what you are thinking of is an on the spot fasting blood glucose test, either from your arm or by finger pricking, whereby pre-diabetes is indicated at 6.0mmol/l. However, these fasting BG tests are notoriously unreliable and not used in the UK for a diabetes diagnosis, and are simply a snap shot of your levels at the time the test was done..

 

[jshire]

No. An HbA1c of 36 is equivalent to 5.4%, and equates to 6.1mmol/l. The 6.1mmol/l is a different type of measurement unit, and is the one used in the UK on finger prick tests and fasting blood glucose tests. You have to remember that an HbA1c is an AVERAGE of your blood glucose levels over the previous 2 to 3 months (weighted towards the end of that period) An average of 6.1mmol/l is excellent and most definitely not in the prediabetes range.

I think what you are thinking of is an on the spot fasting blood glucose test, either from your arm or by finger pricking, whereby pre-diabetes is indicated at 6.0mmol/l. However, these fasting BG tests are notoriously unreliable and not used in the UK for a diabetes diagnosis, and are simply a snap shot of your levels at the time the test was done..

ah, ok - I got confused with the web conversion tools ! thanks !

as I mentioned i've only had one fasting test back in 2014 & since then have had several full blood tests (not finger prick ones). I've looked through all the result sheets from those & the only one I can find that has the glucose level / HbA1c results on is the 2014 one. I did feel I should be tested again but my doc didn't go for that.

 

[Bluetit1802]

I don't know how old you are, but in my Practice everyone over 60 had MOT's including a fasting blood glucose test. This has recently changed. Now the over 40's get one of these MOT's, with an HbA1c. It may be worth asking for another one, just to put your mind at rest, or I believe some pharmacies will do one, but of course you have to pay for that. Other than that, all you can do is use a home meter and test vigorously before and after meals, mornings and bedtimes, record the results, and take them to your doctor.

 

[jshire]

I don't know how old you are, but in my Practice everyone over 60 had MOT's including a fasting blood glucose test. This has recently changed. Now the over 40's get one of these MOT's, with an HbA1c. It may be worth asking for another one, just to put your mind at rest, or I believe some pharmacies will do one, but of course you have to pay for that. Other than that, all you can do is use a home meter and test vigorously before and after meals, mornings and bedtimes, record the results, and take them to your doctor.

thanks. i'm 50 & all the various tests started due to these fatigue & leg symptoms. I've done a bit of research on home monitors but there are such a lot ! I also have a fear of needles - which doesn't help ! ha.

 

[Bluetit1802]

Many of us type 2's on here go for the Codefree meter because the testing strips are by far the cheapest, and if we are to get the best information out of our meters whilst learning we need a lot of strips. Have a look here
http://www.homehealth-uk.com/medical/blood_glucose_monitor_testing.htm .

There is a discount code for ordering 5 or 10 boxes. (each box contains 50 strips)

5 packs 264086
10 packs 975833

Ordering 5 or 10 packs brings the cost down to £5.20 for 50 strips. Free postage.

 

[jshire]

Many of us type 2's on here go for the Codefree meter because the testing strips are by far the cheapest, and if we are to get the best information out of our meters whilst learning we need a lot of strips. Have a look here
http://www.homehealth-uk.com/medical/blood_glucose_monitor_testing.htm .

There is a discount code for ordering 5 or 10 boxes. (each box contains 50 strips)

5 packs 264086
10 packs 975833

Ordering 5 or 10 packs brings the cost down to £5.20 for 50 strips. Free postage.

thanks !

 

[mrspuddleduck]

Just an out of the blue thought. Fatigue and limb pain - I would be asking the doc for a vitamin B12 and vitamin D blood check. Sue xx

 

[Bluetit1802]

Are you on statins by any chance? Side effects can be the type of symptoms you have.

 

[Brunneria]

Ladies, you beat me to it.

Vit D, vit B12 and statins are my questions too.

 

[jshire]

Ladies, you beat me to it.

Vit D, vit B12 and statins are my questions too.

Hi, yes - I forget to say that I am getting B12 injections & a couple of months ago my doc also spotted my Vit D levels were low so prescribed some chewable tablets.

i'm not on any other medication - I was prescribed antidepressants as all of this + a car collision in march has got me down a fair bit, but after doing a lot of research I found that the anti-dp's I was prescribed (i'm limited to certain ones due to having right bundle branch block) do have a common side effect of weight gain (which I wanted to avoid due to possible risk re: diabetes) & more importantly another common side effect of having peripheral neuropathy like side effects ! As i'm still waiting to see a neurologist I thought it best to not complicate things so i've avoided the anti-dp's for now at least.

i've been having B12 injections for almost a year now & my symptoms have got worse in that time, so I don't think they've done much good. The Vit D tablets i've been taking for a month or so - again no sign of improvement so far.

thanks for your replies !

 

[ButtterflyLady]

Hi, yes - I forget to say that I am getting B12 injections & a couple of months ago my doc also spotted my Vit D levels were low so prescribed some chewable tablets.

i'm not on any other medication - I was prescribed antidepressants as all of this + a car collision in march has got me down a fair bit, but after doing a lot of research I found that the anti-dp's I was prescribed (i'm limited to certain ones due to having right bundle branch block) do have a common side effect of weight gain (which I wanted to avoid due to possible risk re: diabetes) & more importantly another common side effect of having peripheral neuropathy like side effects ! As i'm still waiting to see a neurologist I thought it best to not complicate things so i've avoided the anti-dp's for now at least.

i've been having B12 injections for almost a year now & my symptoms have got worse in that time, so I don't think they've done much good. The Vit D tablets i've been taking for a month or so - again no sign of improvement so far.

thanks for your replies !

Have you had your folic acid levels checked? Also have you had iron studies done? Iron overload can cause fatigue. It may be that you need to be on Vit D supplements for many months before you will see an improvement in symptoms. I suggest a repeat test at some stage to see if you are back into the normal range. Same with B12.

You say fibromyalgia was considered but not diagnosed. It's a diagnosis of exclusion, like ME/CFS, so if they can't find anything else wrong, then one or more of these conditions might be the problem. What is your sleep like? There are several sleep disorders that can lead to daytime fatigue, and a sleep study can sometimes help with the diagnostic puzzle.

As your HbA1c of 36 is at the higher end of normal (for example, my mother, with 25 years on you and a strong family history of diabetes, has an HbA1c of only 31)... I suggest you get it tested annually, or at the very least, every 2 years. There is no harm in eating like most of us T2 diabetics do anyway. Along with all these other tests, I hope your doctor has checked your blood pressure as that's just a general check that everyone over 45 should have.

If you are feeling like your GP is tired of trying to help you solve the mystery, is it possible to find a new GP? Sometimes fresh eyes can see new things, and you wouldn't have those exasperated eyes looking back at you. I've had some very hard to diagnose problems over the years and luckily my doctors never stopped trying on my behalf and tried hard not to take their frustration out on me. They had enough empathy and a healthy enough self esteem that they approached the problem on its merits without being condescending towards me. I wish the same for you.

 

[jshire]

Have you had your folic acid levels checked? Also have you had iron studies done? Iron overload can cause fatigue. It may be that you need to be on Vit D supplements for many months before you will see an improvement in symptoms. I suggest a repeat test at some stage to see if you are back into the normal range. Same with B12.

You say fibromyalgia was considered but not diagnosed. It's a diagnosis of exclusion, like ME/CFS, so if they can't find anything else wrong, then one or more of these conditions might be the problem. What is your sleep like? There are several sleep disorders that can lead to daytime fatigue, and a sleep study can sometimes help with the diagnostic puzzle.

As your HbA1c of 36 is at the higher end of normal (for example, my mother, with 25 years on you and a strong family history of diabetes, has an HbA1c of only 31)... I suggest you get it tested annually, or at the very least, every 2 years. There is no harm in eating like most of us T2 diabetics do anyway. Along with all these other tests, I hope your doctor has checked your blood pressure as that's just a general check that everyone over 45 should have.

If you are feeling like your GP is tired of trying to help you solve the mystery, is it possible to find a new GP? Sometimes fresh eyes can see new things, and you wouldn't have those exasperated eyes looking back at you. I've had some very hard to diagnose problems over the years and luckily my doctors never stopped trying on my behalf and tried hard not to take their frustration out on me. They had enough empathy and a healthy enough self esteem that they approached the problem on its merits without being condescending towards me. I wish the same for you.

well, its tricky to know what my doctor has looked at with the various blood tests - I have the sheets from them but after each one he's just said that he couldn't see anything wrong, except the b12 & Vit D levels. The specialist for Fibro / ME did more tests but he discharged me as he didn't think it was either of those - though again I didn't really get much of an explanation. I am considering changing gp's as I do feel that its me who's gone back & said 'could it be this' rather than the doc.

 

[ButtterflyLady]

well, its tricky to know what my doctor has looked at with the various blood tests - I have the sheets from them but after each one he's just said that he couldn't see anything wrong, except the b12 & Vit D levels. The specialist for Fibro / ME did more tests but he discharged me as he didn't think it was either of those - though again I didn't really get much of an explanation. I am considering changing gp's as I do feel that its me who's gone back & said 'could it be this' rather than the doc.

It's good that you've got the sheets from the blood tests. Sometimes they give you that response but the level is right near the top or bottom of the normal range and that's an issue. This is a good website for info about blood test results, or ask here and someone may know:
https://labtestsonline.org/understanding/

Also, a new doctor can review the blood test results and may pick something up.

 

[jshire]

It's good that you've got the sheets from the blood tests. Sometimes they give you that response but the level is right near the top or bottom of the normal range and that's an issue. This is a good website for info about blood test results, or ask here and someone may know:
https://labtestsonline.org/understanding/

Also, a new doctor can review the blood test results and may pick something up.

thanks - I might post some info from my test sheets here to see what folks think. For now i'll tell you a story about tests. I live in the Uk & after months of asking for tests, waiting weeks for a liver scan & then several weeks for the results & then only getting a formal 'your results appear to be normal' letter or comment from the doc in a 10 minute appointment I was frustrated somewhat. I then went to Iceland on a trip & on arriving felt really ill. I was there to teach a course & so it was decided I should go to the local hospital. In less than 40 minutes I was seen, scanned, results printed & the doc talked me through the results in detail. It cost £28 - well worth it ! I'm a big fan of the NHS & of course Iceland has a smaller number of folks, but all of this has given me a new perspective on the stress & worry that waiting for long periods can cause.

 

[mrspuddleduck]

Sorry @jshire but more questions. What is the dosage of your vitamin D tablets? If they are low dosage they may take longer than a month to kick in. And what did the Iceland doctors say? Also what's you diet like? Sue xxx

 

[jshire]

Sorry @jshire but more questions. What is the dosage of your vitamin D tablets? If they are low dosage they may take longer than a month to kick in. And what did the Iceland doctors say? Also what's you diet like? Sue xxx

Hi, it says 'equivalent to 10 micrograms of Vit D'. The Icelandic doctor highlighted a couple of results that were not in what they consider normal range but told me that it could be different in the UK & indeed it was. What they consider out of normal range in the uk isn't. My diet - I don't eat a lot or much junk food but I am overweight, largely because I can't drink water - never have been able to as it makes me feel sick. I also can't drink lots of other drinks that most people do & basically for a long time I drank Coca Cola (but much less fluid than I should have) & orange juice - oj still is my main drink though i try to dilute it as much as I can. I have an odd diet - I can't eat certain things or really don't like others that most people do. I have tried but lets just say i'm not exactly known for my green veg packed diet ! I've looked at various diabetes aware diets but quite a lot of it isn't stuff I eat (oily fish, cheese, milk etc.). I am 'awkward' I guess