Might not be diabetic, but am definitely very confused

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ANeutralName

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Hi!

First off, an apology.

I have to point out that, according to my doctor, I'm not diabetic.

I apologise because I reckon someone in my situation (worried and confused, but possibly not actually diabetic) might be a bit annoying to anyone who undeniably has the condition and is struggling with definite symptoms.

The thing is that I am certainly at high-risk of diabetes, as even my GP agrees (have many risk factors, including a family history of it). And I seem to have multiple symptoms that I don't at the moment have any other explanation for. But they might be something else entirely.

My GP says I don't have it. But that is purely on the basis of an A1c result of 5.7. Which he says means I don't have it, and am perfectly fine, by definition (as, apparently, its now _defined_ by the a1c test score, which, I gather, is itself a change). Though I note that if I were in the US that would constitute pre-diabetes so its not that good a result, it seems to me, no matter what the GP says.

I want to ask a lot of questions, but will try and stick to the main one...

What I most have difficulty with making sense of, is that it seems, from reading, its possible for people who _do_ have diabetes to get their measured blood glucose levels down by means of being extremely careful about exercise and diet. I have heard a few people claim this as a 'cure', but I'm guessing that its more a case of it just being well-managed and under control but still there?

But does that not undermine the whole basis of diagnosis (and definition) via the A1c test? What's the difference, from the point-of-view of the A1c test, between not having diabetes, and having diabetes that you are currently, or at least for the last few months the test covers, controlling well by means of diet and exercise?

Because in recent years I've been extremely physically-active and had a pretty good diet. But some of my symptoms pre-date that, going back to when I was much, much less physically active (and very overweight). Essentially l had chronic fatigue for many years and so put on lots of weight, then it went away and I went quite mad on exercise for many years and lost it all again. But recently, I seem to have developed some new problems, including a frozen shoulder that really crippled me for many months, and a horribly, chronically, dry mouth and eyes.

What I struggle to understand is how can the GP be so certain the test result means I don't have the condition, rather than having it but just that its been well-controlled lately?

I just don't get how the A1c test can be a definitive diagnostic test when it can be affected by current diet and activity levels.

(Again, apologies if I'm worrying about nothing and shouldn't even be on this forum,but I really couldn't get any sense out of my GP about the topic - his attitude was just to repeatedly invoke the test result and basically say "computer says no, now go away". But I am still a bit worried, especially as I have symptoms and I'm the same age my dad was when he developed it).
 
Welcome to the forum! I can understand your GP saying you don't have diabetes with an HbA1c of 5.7, which is in non-diabetic range. However that does not help if you are worried. Do any of your family members have a blood glucose meter (where they prick their finger and take a reading of their blood glucose level at that time)? If so, perhaps you could put your mind at ease by testing your fasting blood sugar level first thing in the morning, you would look for it to be between 3.5 - 6.7. Also you could try testing 2 hours after eating something really full of carbohydrates, say a nice big piece of cake. You would then hope your blood glucose would be under 8 after 2 hours. If you don't have access to a meter, some chemists will do you a test for free.
This will not give you a diagnosis (or not) of diabetes, but will perhaps give you some more data to reflect on.
Best of luck and let us know how you get on. 🙂
 
ANeutralName said:
Hi!

First off, an apology.

I have to point out that, according to my doctor, I'm not diabetic.

I apologise because I reckon someone in my situation (worried and confused, but possibly not actually diabetic) might be a bit annoying to anyone who undeniably has the condition and is struggling with definite symptoms.

The thing is that I am certainly at high-risk of diabetes, as even my GP agrees (have many risk factors, including a family history of it). And I seem to have multiple symptoms that I don't at the moment have any other explanation for. But they might be something else entirely.

My GP says I don't have it. But that is purely on the basis of an A1c result of 5.7. Which he says means I don't have it, and am perfectly fine, by definition (as, apparently, its now _defined_ by the a1c test score, which, I gather, is itself a change). Though I note that if I were in the US that would constitute pre-diabetes so its not that good a result, it seems to me, no matter what the GP says.

I want to ask a lot of questions, but will try and stick to the main one...

What I most have difficulty with making sense of, is that it seems, from reading, its possible for people who _do_ have diabetes to get their measured blood glucose levels down by means of being extremely careful about exercise and diet. I have heard a few people claim this as a 'cure', but I'm guessing that its more a case of it just being well-managed and under control but still there?

But does that not undermine the whole basis of diagnosis (and definition) via the A1c test? What's the difference, from the point-of-view of the A1c test, between not having diabetes, and having diabetes that you are currently, or at least for the last few months the test covers, controlling well by means of diet and exercise?

Because in recent years I've been extremely physically-active and had a pretty good diet. But some of my symptoms pre-date that, going back to when I was much, much less physically active (and very overweight). Essentially l had chronic fatigue for many years and so put on lots of weight, then it went away and I went quite mad on exercise for many years and lost it all again. But recently, I seem to have developed some new problems, including a frozen shoulder that really crippled me for many months, and a horribly, chronically, dry mouth and eyes.

What I struggle to understand is how can the GP be so certain the test result means I don't have the condition, rather than having it but just that its been well-controlled lately?

I just don't get how the A1c test can be a definitive diagnostic test when it can be affected by current diet and activity levels.

(Again, apologies if I'm worrying about nothing and shouldn't even be on this forum,but I really couldn't get any sense out of my GP about the topic - his attitude was just to repeatedly invoke the test result and basically say "computer says no, now go away". But I am still a bit worried, especially as I have symptoms and I'm the same age my dad was when he developed it).
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Hi A neutral name,

I was diagnosed in Feb last year with a hba1c of 6.9 (52) and after a period of diet and admittedly only a bit more exercise, I got it down to 5.9 (41). However, having once past the threshold I'm deemed as a 'well controlled diabetic'. The issue is that without considerable extra effort, my levels would deteriorate because I've clearly got some degree of insulin impairment. A non diabetic wouldn't need to keep making these efforts because their body could cope and regulate.
I understand your confusion about this because I've felt it myself. Truth is, it seems that once you hit the magic 48 level (6.5), you're deemed to be officially diabetic though some doctors continue to test.
The prevailing attitude on this site seems to be that whilst the Hba1c test is a reliable indicator of an average glycated haemoglobin level over the past 3 months, it cannot accurately reflect day to day peaks, spikes and troughs. Which is why regular home testing is a more reliable indicator. Even people on this site who are struggling with very high BG's at times throughout the day, particularly mornings, can somehow register a Hb result under diabetic levels.

My view, for what it's worth, is that following a diabetic diet (within limits) is a wise option for anyone near the borderline, with a genetic disposition, overweight or other factors that predispose them to the type 2 condition.
It really sounds to me that the lifestyle choices you wisely made could have staved off a full diabetic diagnosis at that stage. Who knows in fact whether you'd have registered diabetic at that time? The important thing is you addressed it and continue to be mindful of the dangers. It's a fluid thing and predisposition to me is the key issue not definitive numbers that fluctuate.

Just a thought and it's only that. You mention a frozen shoulder and chronically dry eyes and mouth. Has the doctor ever considered Sjogrens Syndrome? (It's pronounced Showgrens) I have similar symptoms and it's an auto-immune condition that my Opthamologist feels is connected with diabetes. It's not a curable but is a treatable condition and causes other symptoms including joint pain and salivary impairment and dry eyes.

The only way you could know and satisfy your own curiosity and concerns about the diabeties is to home test and keep records for your doctor. They rely heavily on the Hba1c test I'm afraid and don't encourage home testing. However it's your life and you have the right to monitor as long as it doesn't become a preoccupation.

Hope this helps a little. Good luck.
 
Welcome A N N. If I were in you situation I would do my best to try not to become diabetic. T2 your pancreas my work 20% or 80&. Can you imagine if someone was 30st your pancreas & other organs would get surrounded with fat- reducing how they work. Try a keep as active as you can & good luck with things 🙂 Keep asking !
 
Thanks for the quick and supportive/helpful responses. Actually could say a lot more but will come back later!

I actually already bought a meter (don't think they had such things in my dad's day, and I do wonder if he would have managed things better if they had) but didn't have enough test-strips and made a bit of a botch of most of the few I did have, due to trouble getting any blood.

Problem is I've kind-of acquired a low-carb low-fat habit and actually have recently seriously lost appetite (due to worry, possibly) as well, so don't currently feel like eating anything 'bad' so the couple of results I managed to get I don't believe prove anything either way.

Need to try one when I next fall off the wagon and binge on crisps or something, I suppose? Another question I had was what's a suitable kind-of meal to provide a good self-test with post-prandial glucose?)
 
ANeutralName said:
Thanks for the quick and supportive/helpful responses. Actually could say a lot more but will come back later!

I actually already bought a meter (don't think they had such things in my dad's day, and I do wonder if he would have managed things better if they had) but didn't have enough test-strips and made a bit of a botch of most of the few I did have, due to trouble getting any blood.

Problem is I've kind-of acquired a low-carb low-fat habit and actually have recently seriously lost appetite (due to worry, possibly) as well, so don't currently feel like eating anything 'bad' so the couple of results I managed to get I don't believe prove anything either way.

Need to try one when I next fall off the wagon and binge on crisps or something, I suppose? Another question I had was what's a suitable kind-of meal to provide a good self-test with post-prandial glucose?)
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Anything high carb...pizza and chips would certainly do it followed by a piece of cake! I can dream! Lol
 
What everyone needs to avoid are things that make your blood sugar spike. Sweets etc. Things like porridge takes a long time to digest so are better(slow release of energy). Good luck 🙂
 
Well first of all the HbA1c doesn't measure your blood glucose 'now' - it measures how much of it has stuck to your red blood cells over the last 12-ish weeks - if you eat eg a jam doughnut OK the glucose hits your bloodstream, but if your body is working as it should, then the glucose won't stay there long enough to stick to anything - so it's only what your body can't deal with in a timely fashion, that the test can measure.

As you say, it is indeed possible that you have actually been 'managing your diabetes with just diet and exercise' - so none did manage to stick. However if the frozen shoulder only lasted around 6 months, then it's exceedingly unlikely you are either diabetic or pre-diabetic!

There is another test that they used to do, an OGTT (still do sometimes) and you can DIY that, with a meter, 2 or 3 strips, a measured amount of glucose drink (eg Lucozade) and two hours to spare to sit and twiddle your thumbs. Test before, drink the drink over 5-10 mins, sit still, test if you want to after an hour to see what might be happening, sit still for another hour, test again. How different are the before and after tests?
 
Hi, welcome to the group..... I think you have a justified concern, with D being in the family so I think it's wise to give yourself a check every so often (just to make sure), in my family My Grandfather was T2, one of my brothers is pre-D & I'm T2.... My other brother is an ultrarunner so, if he were to be D, then it would be definitely controlled by diet & exercise. My nieces have been warned that they may have a genetic predisposition to T2
 
Am going to get more test-strips and at some point try a test after a high-carb meal. I've only had results of 6.0 post-meal, and it goes down to 5.1 or so after a couple of hours. But that's with just green veg and chicken, so I'm not at all sure it proves anything about what would happen/has happened in the past when munching crisps or pizza! Am disappointed that fasting level seems to come out around 5.1 or so, but I suppose that's not necessarily bad??

Main worry really (apart from the fact I've put on weight again since the frozen shoulder reduced my activity level, so absolutely have to lose that again) is the dry mouth (and nasal passages, and eyes). It's really quite bad, its been driving me crazy for a month and a half now. Unfortunately it takes an _age_ to get a GP appointment and the last one didn't get me anywhere.

@Amigo, yes, Google turned up Sjorgens as the next suggestion after diabetes, and I do get bouts of geographic tongue (which I think is an autoimmune thing?) - so its possible, but I don't have much confidence my GP will have anything to say about it.

There are several other 'symptoms' but for those I really can't tell whether I'm just noticing commonplace and unrelated bodily glitches because I'm worrying about it. The dry mouth is the main thing that is worryingly unusual for me.

@trophywench thanks for suggestion, might just try that with lucozade or something, guess that would allow a fairly precise test.
 
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Let us know how you get on after a high carb meal. All your readings seem normal so far, but as you say, you haven't eaten the carbs. I don't remember dry nasal passages and eyes or mouth, although I did feel thirsty. Everyone is different though. All the best 🙂
 
ANeutralName said:
Am going to get more test-strips and at some point try a test after a high-carb meal. I've only had results of 6.0 post-meal, and it goes down to 5.1 or so after a couple of hours. But that's with just green veg and chicken, so I'm not at all sure it proves anything about what would happen/has happened in the past when munching crisps or pizza! Am disappointed that fasting level seems to come out around 5.1 or so, but I suppose that's not necessarily bad??

Main worry really (apart from the fact I've put on weight again since the frozen shoulder reduced my activity level, so absolutely have to lose that again) is the dry mouth (and nasal passages, and eyes). It's really quite bad, its been driving me crazy for a month and a half now. Unfortunately it takes an _age_ to get a GP appointment and the last one didn't get me anywhere.

@Amigo, yes, Google turned up Sjorgens as the next suggestion after diabetes, and I do get bouts of geographic tongue (which I think is an autoimmune thing?) - so its possible, but I don't have much confidence my GP will have anything to say about it.

There are several other 'symptoms' but for those I really can't tell whether I'm just noticing commonplace and unrelated bodily glitches because I'm worrying about it. The dry mouth is the main thing that is worryingly unusual for me.

@trophywench thanks for suggestion, might just try that with lucozade or something, guess that would allow a fairly precise test.
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Hi, yes Sjogrens is an incredibly difficult diagnosis to have confirmed and on average takes over 2 years. Medics don't seem to appreciate the possible systemic implications of it. I was referred to both a maxiofacial surgeon and an Opthamologist but in truth, that only happened because I have leukaemia. Your GP can give you a mouth moisture/salivary supplement which is truly disgusting but keep an eye on your teeth and gums and try to keep your mouth moist with drinks etc. The only way to confirm it would be through a biopsy and if things got really bad, your dentist could refer you to a maxiofacial surgeon without reference to your GP.

I think your BG levels sound very reasonable and as you're onto things, I really wouldn't stress too much. Some occasional home testing and your own glucose tolerance test would help reassure you I think.

All the best 🙂
 
OK, I'm back!
It's been a very long time since I posted here, I realise. Apologies for not replying to the most recent replies. But a lot has happened in that time, and, ironically enough, I'm sort-of back where I started - worrying about diabetes.
Not sure how to go through it all...this is the short version, I guess.

I got myself a blood sugar meter, and periodically tested my own blood sugar on a rather random basis for many months. I was reassured to find it never went out of the appropriate range for the time of the test relative to eating. Seemed a bit on the high end of normal, but eventually I concluded I didn't have diabetes. Carried on looking for other explanations, as unfortunately my symptoms continued to get worse.

The search for other explanations led to multiple referrals to different specialists (and, increasingly, to suggestions of depression or anxiety and offers of various psychiatric meds...plus a very unsatisfactory experience of CBT - which I have to say I have conceived a strong dislike of). Eventually I saw an ENT consultant due to my increasingly bad night-time and morning headaches, dry mouth (did I mention that already?) and possible apnoea at night. They sent me for a barium swallow to check for acid reflux, which was negative, then discharged me.
After several further goes round the medical-merry-go-round - including a rheumatologist who concluded I didn't have Sjogren's - I got referred to a second ENT specialist, and this one sent me for a CT-scan to look at my sinuses.

The CT scan entirely unexpectedly revealed a large (but non-cancerous) brain tumour, which was causing hydrocephalus. I had almost immediate brain surgery to remove it (it happened within 24 hours of being told about it). I don't really know if this happened so quickly because it was considered life-threatening or just because the COVID lockdown meant they didn't have many other patients and so had nothing else to do! I'm kind of used to waiting 6 months to a year for NHS treatment, so having this happen so quickly was a bit of a shock.

Since being discharged (after they drilled through my brain!) I have been disheartened to find my symptoms have continued, even worsened.

Worryingly, having started again checking my own blood sugar, I now find I'm getting much higher figures than when I tested it shortly after the time I registered here. Then I was rarely getting anything higher than 5.9, The two-hour post meal figure today for example was 9.1, and fasting I often get over 6.0. Those are substantially higher numbers than I was getting a couple of years ago when I first tried testing.

What disturbs me particularly is reading that hydrocephalus itself is a major risk factor for diabetes (because it apparently messes up your hormonal systems). And I really don't know how long I have had hydrocephalus, undiagnosed. The tumour (or, rather, cyst) causing it is congenital so would have been there my whole life, and nobody can tell me at what point it would have started obstructing CSF flow.
 
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ANeutralName said:
OK, I'm back!
It's been a very long time since I posted here, I realise. Apologies for not replying to the most recent replies. But a lot has happened in that time, and, ironically enough, I'm sort-of back where I started - worrying about diabetes.
Not sure how to go through it all...this is the short version, I guess.

I got myself a blood sugar meter, and periodically tested my own blood sugar on a rather random basis for many months. I was reassured to find it never went out of the appropriate range for the time of the test relative to eating. Seemed a bit on the high end of normal, but eventually I concluded I didn't have diabetes. Carried on looking for other explanations, as unfortunately my symptoms continued to get worse.

The search for other explanations led to multiple referrals to different specialists (and, increasingly, to suggestions of depression or anxiety and offers of various psychiatric meds...plus a very unsatisfactory experience of CBT - which I have to say I have conceived a strong dislike of). Eventually I saw an ENT consultant due to my increasingly bad night-time and morning headaches, dry mouth (did I mention that already?) and possible apnoea at night. They sent me for a barium swallow to check for acid reflux, which was negative, then discharged me.
After several further goes round the medical-merry-go-round - including a rheumatologist who concluded I didn't have Sjogren's - I got referred to a second ENT specialist, and this one sent me for a CT-scan to look at my sinuses.

The CT scan entirely unexpectedly revealed a large (but non-cancerous) brain tumour, which was causing hydrocephalus. I had almost immediate brain surgery to remove it (it happened within 24 hours of being told about it). I don't really know if this happened so quickly because it was considered life-threatening or just because the COVID lockdown meant they didn't have many other patients and so had nothing else to do! I'm kind of used to waiting 6 months to a year for NHS treatment, so having this happen so quickly was a bit of a shock.

Since being discharged (after they drilled through my brain!) I have been disheartened to find my symptoms have continued, even worsened.

Worryingly, having started again checking my own blood sugar, I now find I'm getting much higher figures than when I tested it shortly after the time I registered here. Then I was rarely getting anything higher than 5.9, The two-hour post meal figure today for example was 9.1, and fasting I often get over 6.0. Those are substantially higher numbers than I was getting a couple of years ago when I first tried testing.

What disturbs me particularly is reading that hydrocephalus itself is a major risk factor for diabetes (because it apparently messes up your hormonal systems). And I really don't know how long I have had hydrocephalus, undiagnosed. The tumour (or, rather, cyst) causing it is congenital so would have been there my whole life, and nobody can tell me at what point it would have started obstructing CSF flow.
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Have you been on any medications following your operation?
 
Wow - so glad they found and removed your benign tumour! I hope you’re recovering ok.

The old test for diabetes used to be two random blood sugars over 11.1. You haven’t had that. I suggest you give your body time to recover - ie a few months - and then possibly request another HbA1C. That is the diagnostic test now, as said above.

Any major life event can mess with your hormones - hence why I suggest waiting. In the meantime, concentrate on good health - good food, exercise and relaxation.

The blood glucose meters you can buy are not for diagnostic purposes. They’re for people who already have diabetes so that they can check their control. The meters have a 15% margin of error and are purposely not used for diagnosis. Only an HbA1C will tell you the answer.

Re your dry mouth, if everything else has been ruled out, it sounds like a nasal/throat issue or mouth-breathing. I suffer from occasional mild sinus issues and often have a dry mouth. It seems to be in my throat somehow. It’s irritating but something I’ve learned to live with.
 
Only medication I've been on was an occasional anti-histamine as a kind of ersatz-sleeping pill/sedative to help with sleep.

Very relieved/happy to hear that the figures I've been getting since the op are not high enough to meet the (earlier) criteria for diabetes. I guess that's the information I was hoping to hear here (though I hadn't really thought it through). That seems to mean one less thing to worry about.
My anxiety about it keeps waxing-and-waning, depending on how high my most recent test result has been (I have to be sparing with them as I don't have many test strips left). I haven't had one over 11, though I've had some of 8 or 9, which is much higher than anything I was getting before (when I concluded I didn't have diabetes).

I think the dry mouth may well be to do with some sort of apnoea and hence night-time mouth-breathing - I wake up most mornings feeling downright brain-damaged (which, technically, I am, I suppose), concussed and dizzy to the point of nausea, and basically not breathing. Confusingly I have read there's a connection bettween apneoa and hydrocephalus - they exacerbate each other, or something.

Thank you both for the replies (which are somewhat reassuring).

Edit - apparently this kind of tumour can be fatal, I've read that some studies state that in 10% of cases the first "presenting symptom" is "sudden death". So I guess things could be worse!
 
ANeutralName said:
Only medication I've been on was an occasional anti-histamine as a kind of ersatz-sleeping pill/sedative to help with sleep.

Very relieved/happy to hear that the figures I've been getting since the op are not high enough to meet the (earlier) criteria for diabetes. I guess that's the information I was hoping to hear here (though I hadn't really thought it through). That seems to mean one less thing to worry about.
My anxiety about it keeps waxing-and-waning, depending on how high my most recent test result has been (I have to be sparing with them as I don't have many test strips left). I haven't had one over 11, though I've had some of 8 or 9, which is much higher than anything I was getting before (when I concluded I didn't have diabetes).

I think the dry mouth may well be to do with some sort of apnoea and hence night-time mouth-breathing - I wake up most mornings feeling downright brain-damaged (which, technically, I am, I suppose), concussed and dizzy to the point of nausea, and basically not breathing. Confusingly I have read there's a connection bettween apneoa and hydrocephalus - they exacerbate each other, or something.

Thank you both for the replies (which are somewhat reassuring).

Edit - apparently this kind of tumour can be fatal, I've read that some studies state that in 10% of cases the first "presenting symptom" is "sudden death". So I guess things could be worse!
Click to expand...

I’m sorry to hear this and wondered if you’ve had a sleep study done to assess the extent of the sleep apnoea? It could be you need a CPAP mask for sleeping to try and reduce your symptoms. Dry mouth is also associated with stress and anxiety which understandably you experience. Anti histamines are also associated with dry mouth symptoms.
Try not to stress about your BG’s, sometimes we can only deal with health issues a bite size at a time. Do the best you can with carb control and don’t obsess over them because you sound ok presently. I’ve had to accept that other issues sometimes push the blood glucose higher than we’d hope despite our efforts.

The important thing is getting yourself stronger physically and emotionally after a very rough time. Best wishes.
 
Really sorry to hear of the medical events you have been through. That must have been really traumatic.
Can I just mention that test strips have a finite lifespan and can degrade, particularly once the pot is opened. Just wondering if you have had these test strips since your original post then the reason for your higher readings may be to do with them being old rather than your readings increased. However stress and anxiety also increase BG levels.
I wonder if it may also help you to see the trace of an extremely fit and healthy non diabetic person's BG levels, so that you have a bit more appreciation for how much BG levels vary even in non diabetic individuals.... Someone posted a link to a Freestyle Libre trace of an extreme marathon runner who was not diabetic and it was really fascinating to see.... particularly for those of us trying to balance our levels with insulin.... but may help you to understand how much variation is normal.... will try to find it and post a link
 
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