Might not be diabetic, but am definitely very confused

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Welcome back @ANeutralName

Goodness what a lot you’ve been through!

So pleased you had your cyst detected and operated on so speedily. Hope your recovery continues, and that you find a solution for your dry mouth, and that your anxiety abates.
 
Amigo said:
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.
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I seem to have problems getting one of these 'sleep studies'. It's a long story. Decades ago I was having really bad sinus problems (the maxillary sinsues I think, the ones behind your cheek bones kept flaring up and blocking up completely, plus glowing so hot that people could feel the heat coming off my face) which coincided with start of a chronic fatigue problem. I tried back then to get referred for such a test, but all they did was some skin tests for allergies to the most common allergens, find they were negative, and then discharge me. It seemed very hard to get an actual sleep study via the NHS.

Those sinus problems eventually went away, possibly because of changing where I was living (maybe escaping whatever it was I was allergic to?). After a very long time (over a decade) the fatigue eventually got better as well. Since then, however, firstly the fatigue returned, quite suddenly, and secondly so has what feels like even worse sinus problems (though different sinuses this time, I think the spheroid sinuses, or maybe it's just my nasal passages?).

However the CT scan that found the cyst/tumour also apparently showed my sinuses to be clear - which I don't understand as something in there blocks up constantly, especially at night when it feels like it fills with rock-hard concrete. I usually wake up dizzy as hell with a mouth that feels like it's burning. I'd say I feel 'concussed' in the mornings - though since they removed the cyst the headaches have maybe reduced in intensity.

I no longer understand at all what is going on. I thought the bad headaches I was getting at night and the dizzyness in the morning were due to some sinus problem and apnoea, but they didn't find anything in my sinuses, instead - entirely unexpectedly to me - they found this cyst (which, from what I read on the web, was actually quite large) and the hydrocephalus it was causing - which they considered to be the cause of the headaches.

The complication is that the cyst/hydrocephalus could potentially explain anything and everything, as it can cause brain-damage. So now I wonder about every symptom in relation to that.

I'm trying not to stress too much about the blood sugar issue - I daren't test it again in case it gets me worried again - but I am trying to be very careful about what I eat now.
 
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rebrascora said:
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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The test strips are certainly a bit old (I wondered about that myself), though they've been in the sealed pot the whole time.
 
ANeutralName said:
The test strips are certainly a bit old (I wondered about that myself), though they've been in the sealed pot the whole time.
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Test strips usally have a short shelf life ,unopened most only have a year to expire date.
I have long term Allergic Rhinitis, I get nasal polyps, have they ruled these out in you?
 
grovesy said:
Test strips usally have a short shelf life ,unopened most only have a year to expire date.
I have long term Allergic Rhinitis, I get nasal polyps, have they ruled these out in you?
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Heh, having looked at the pot they're in, the expiration date is over a year ago! Would that tend to make readings come out too high or low, though? Or just randomly wrong?

I saw two different ENT people, who peered up my nose and didn't see much other than 'mild inflammation'. It really drives me crazy (not only does my nose block up completely at nights, since the brain surgery I've had quite bad tinnitus - am getting nervous I might actually lose my hearing). It does seem like a severe allergy, but neither skin tests nor blood tests have showed any response to the allergens they test for, and repeated changes of bedding hasn't made any difference.
 
If the test strips are expired they can't be relied upon. I have never used out of date strips so don't know, but have the odd strip that have had errors, and once contacted the company of the strips I had a problem with they sent replacement and I had to return the batch to them for them to look at. They said at the time if they are not stored correctly including anywhere in the supply chain there can be problems.
If you have had ENT doctors examine your nose then I would expect they have ruled out polyps. I definitely have allergies as I have been tested a couple of times and even after having nearly 50 years ago had a course of desensitizing injections, still have allergies but I live them. I breathe through my mouth so I have been told.
 
grovesy said:
If the test strips are expired they can't be relied upon. I have never used out of date strips so don't know, but have the odd strip that have had errors, and once contacted the company of the strips I had a problem with they sent replacement and I had to return the batch to them for them to look at. They said at the time if they are not stored correctly including anywhere in the supply chain there can be problems.
If you have had ENT doctors examine your nose then I would expect they have ruled out polyps. I definitely have allergies as I have been tested a couple of times and even after having nearly 50 years ago had a course of desensitizing injections, still have allergies but I live them. I breathe through my mouth so I have been told.
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I am pretty sure I have an allergy of some sort, but have no idea what it is to! They tested for the 'common' allergens and found nothing.

My nights are pretty hellish, to be honest, getting through them is like an ordeal - headaches, constantly waking to pee (like, ten times a night), dizzyness, nausea, nose blocks up with what feels like dry crusty glue, painfully sore and dry mouth, even my throat and chest muscles feel oddly 'paralysed' so I struggle to breath. Plus quite bad tinnitus. Some of this continues during the day, but is always much worse when I sleep.

Finding the brain cyst was a complete surprise, but I had really hoped it would turn out to be the explanation for everything. Not least because the scan showed it was already causing hydrocephalus - which, apparently, from what I've read, in turn can cause progressive brain damage (which potentially, it seems, could explain almost any symptom...but something that explains everything, explains nothing, if you see what I mean?). And because one of the symptoms has always been a feeling as if some pressure in my head was cutting off the blood supply to my brain, making me fatigued and dizzy and as if my brain was collapsing in on itself. Though I feel like that's almost _too_ literal a manifestation of hydrocephalus, and that the condition probably doesn't actually feel like that. It always felt more as if the pressure was in my sinuses, but the same scan that revealed the cyst showed no problem in them.

But since they removed the cyst and alleviated the hydrocephalus by removing the excess fluid with an external drain, the symptoms have if anything been worse.
I've at least gotten another referral to have the HbA1c blood test again, and if that is negative I will stop worrying about diabetes at least (and stop testing with my possibly-useless out-of-date test strips!). The trouble is the lockdown means accessing health-care is rather difficult at the moment, hence I end up googling for information and/or posting on forums like this!

(What makes me wonder about diabetes now are papers like this: https://pubmed.ncbi.nlm.nih.gov/874510/)
 
_Finally_ managed to get another (HbA1c) diabetes test, despite the lockdown. Honestly, these are difficult times (for everyone, I assume, certainly anyone with existing ongoing health problems). GP surgery has been closed for a year now and even getting a telephone consultation is a huge palaver. To get the blood samples taken required walking 4 miles to the hospital as they don't do it at the GP's surgery even in normal times, and I've been feeling so ill it took me a month before I managed to get there to get the blood samples done (first two attempts to walk there I arrived too late). Plus felt nervous about going there before I got at least the first vaccine jab. On top of that the letter from the GP asking me to make a phone appointment to 'discuss the results' took nearly 2 weeks to reach me.

Also my last follow-up phone appointment with the neurologist didn't happen as they didn't call, and when I phoned the hospital it turned out the consultant who was dealing with me has left and no longer works there. My impression is that everything non-COVID in the NHS has ground to a halt.

Tomorrow morning I should get a phone call from the GP to find out the result. Very anxious that it might be positive for diabetes - find it hard to imagine how I can feel this bad and _not_ have it (utter exhaustion, nausea, headaches, tinnitus...). The fact that the hydrocephalus I had (for who knows how many years?) is apparently a big risk factor for the condition is worrying. Really hoping the test didn't come back positive...but at the same time, if it didn't I'm left not knowing why I feel so ill.
 
Glad to hear you’ve had another A1c check @ANeutralName

Hope the result provided reassurance and shed some light on what has been going-on
 
Well, two-and-a-half-years on my symptoms (bouts of severe dizziness and vertigo, feelings of pressure/concussion in my head - that seem to move around my head depending on whether I'm lying down or standing up, generally I'd describe it as my head "ringing", as if I'd recently been too close to an explosion - general exhaustion, very frequent need to pee, constantly dry, sore mouth, obstruction in my nose/sinuses, tinnitus, stinging pain in my scalp, a weirdly weak left leg and arm...) still continue. They might even be worse.

Still don't really know how they relate to the hydrocephalus (which supposedly has now been resolved with the removal of the tumour/cyst, but I gather my brain is _probably_ still irreversibly 'squashed'...though I don't really know as nobody has told me anything since the surgery...my usual GP quit the job during the pandemic and the new ones I've seen since have been annoyingly dismissive, just muttering something about 'medically unexplained symptoms' and insisting the chronic hydrocephalus diagnosis was 'incidental').

In the intervening time I've been further diagnosed with hypothyroidism and am now on levothyroxin. I also finally got an apnoea/sleep test, which apparently found no sign of apnoea (even though I wake up extremely dizzy and not-breathing as well as needing to pee, repeatedly during the nights, it seems the finger pulsometer thing found no sign of oxygen deficit...though I do wonder how reliable those things are).

I still have no idea what is going on. Having spent the pandemic reading every neurology paper I could find about my brain condition, the gist of them seemed to be that "we've barely studied this condition and it's both very rare and seems to present with a vast variety of different symptoms so we don't really know much about it"

But, just to complicate things and bring it full circle, the latest A1C test (I pestered them for yet another one!) apparently came out in the pre-diabetes range, so I've now been referred to a 'diabetes avoidance' course. Anyone had experience of those things? I worry that I'm going to struggle with anything exercise-related, because of the exhaustion and other symptoms, plus getting anything close to a decent night's sleep is out of the question.
 
ANeutralName said:
Well, two-and-a-half-years on my symptoms (bouts of severe dizziness and vertigo, feelings of pressure/concussion in my head - that seem to move around my head depending on whether I'm lying down or standing up, generally I'd describe it as my head "ringing", as if I'd recently been too close to an explosion - general exhaustion, very frequent need to pee, constantly dry, sore mouth, obstruction in my nose/sinuses, tinnitus, stinging pain in my scalp, a weirdly weak left leg and arm...) still continue. They might even be worse.

Still don't really know how they relate to the hydrocephalus (which supposedly has now been resolved with the removal of the tumour/cyst, but I gather my brain is _probably_ still irreversibly 'squashed'...though I don't really know as nobody has told me anything since the surgery...my usual GP quit the job during the pandemic and the new ones I've seen since have been annoyingly dismissive, just muttering something about 'medically unexplained symptoms' and insisting the chronic hydrocephalus diagnosis was 'incidental').

In the intervening time I've been further diagnosed with hypothyroidism and am now on levothyroxin. I also finally got an apnoea/sleep test, which apparently found no sign of apnoea (even though I wake up extremely dizzy and not-breathing as well as needing to pee, repeatedly during the nights, it seems the finger pulsometer thing found no sign of oxygen deficit...though I do wonder how reliable those things are).

I still have no idea what is going on. Having spent the pandemic reading every neurology paper I could find about my brain condition, the gist of them seemed to be that "we've barely studied this condition and it's both very rare and seems to present with a vast variety of different symptoms so we don't really know much about it"

But, just to complicate things and bring it full circle, the latest A1C test (I pestered them for yet another one!) apparently came out in the pre-diabetes range, so I've now been referred to a 'diabetes avoidance' course. Anyone had experience of those things? I worry that I'm going to struggle with anything exercise-related, because of the exhaustion and other symptoms, plus getting anything close to a decent night's sleep is out of the question.
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Oh my goodness what a traumatic few years you have had. If you are in prediabetes zone then yes exercise will help but not as much as some modest changes to your diet. Small changes in your meals by reducing the amount of carbohydrates having extra veg and basing meals on protein and healthy fats.
This link has good explanation but is for those with a diabetes diagnosis but there may be some ideas you could adopt for reducing your carbs https://lowcarbfreshwell.com/
 
Hi @ANeutralName, I just finished reading through your whole thread and my goodness, you have been through such a lot! Sorry to hear about your latest HbA1c. I’m sure you’ll get lots of good advice on that here.

I wanted to share that I went a diabetes prevention course when I first got diagnosed with pre-diabetes back in 2019. My memory is that it was, in my opinion, very basic, general advice on making dietary changes and losing weight. There was a section on exercise and I wasn’t able to exercise at the time (also due to fatigue). The only awkward thing with that was they went round at the end and asked us what our exercise goals were (not in front of the whole group). I think I just said trying to build up to walking for ten minutes in one go. They didn’t really know what to do with me as I didn’t need to lose weight and couldn’t exercise.

I personally felt like almost none of the information was relevant to me, but I recently found out that I actually have type 1 diabetes, so perhaps that explains that one. Keep checking in here because there’s lots of great advice, and I don’t personally think you can beat learning from others who are actually managing these conditions every day.
 
Thanks for the update @ANeutralName

Hope the course provides you with some helpful information 🙂
 
TwilightMidna said:
Hi @ANeutralName, I just finished reading through your whole thread and my goodness, you have been through such a lot! Sorry to hear about your latest HbA1c. I’m sure you’ll get lots of good advice on that here.

I wanted to share that I went a diabetes prevention course when I first got diagnosed with pre-diabetes back in 2019. My memory is that it was, in my opinion, very basic, general advice on making dietary changes and losing weight. There was a section on exercise and I wasn’t able to exercise at the time (also due to fatigue). The only awkward thing with that was they went round at the end and asked us what our exercise goals were (not in front of the whole group). I think I just said trying to build up to walking for ten minutes in one go. They didn’t really know what to do with me as I didn’t need to lose weight and couldn’t exercise.

I personally felt like almost none of the information was relevant to me, but I recently found out that I actually have type 1 diabetes, so perhaps that explains that one. Keep checking in here because there’s lots of great advice, and I don’t personally think you can beat learning from others who are actually managing these conditions every day.
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Sounds pretty close to what I was imagining it would be. I doubt I'll learn much in factual terms from it, but I'm hoping there will be some degree of support involved, as I feel I have a lot I need to talk about after the last few years (actually, the last few decades, as the symptoms have been going on for a long time). I've spent the years since the surgery reading every single neurology paper I could find about the brain condition I had, and it seems as if it _might_ explain much of my history of symptoms, but it seems that nobody can really say for sure as it's had so little research (I found one paper reporting a 'pilot study' to determine what the typical presenting symptoms of it are, that was only published in 2021, and which seemed to conclude with the classic "more research is needed").

And I do need to lose weight (again). It's quite frustrating that up until the fatigue suddenly resumed at the end of 2013 I was not overweight at all and was very physically active, but seems I've since put on a couple of stone and I guess I have to start all over again if I'm to avoid this progressing to full diabetes. Just hoping this course will help me do that.
 
@ANeutralName I can totally understand wanting to find some support. You’ve been through so much! I’m the same as you - I tend to read up about everything going on with my health. I think it helps me feel like I have some sense of control which is often sorely absent.

I hope the course will help you too! I liked chatting with other pre-diabetics and hearing about their experiences. Let us know how it goes? Your comment reminded me that I was actually offered a follow-up one-to-one session because I didn’t quite fit the information they were offering. It never happened (presumably because of the pandemic) but maybe you could ask if that’s an option for you?

I think weight gain is something that understandably happens to a lot of people who suffer with fatigue. Dealing with fatigue is so frustrating because it’s like your mind is willing but your body is just not playing ball. If you ever want to chat about the fatigue, please feel free to reach out. I’ve found over the years that most people truly don’t understand the extent of it and how it affects our lives, unless they’ve been through it themselves. Hang in there and keep us updated if you can!
 
I've started this course. Though I opted for the 'on-line with individual support' option, as I was nervous about meeting up with a group because of COVID (plus, as the groups are local, I wasn't very keen on possibly ending up having to talk about my medical issues with people who might turn out to know my neighbours).

In all honestly, all the on-line stuff seems pretty obvious so far. It's not as if I don't know how to read a food label, or know that too much saturated fat is bad and exercise is good for you, or know that food is cheaper from a large supermarket than a corner shop. It doesn't really help with the terrible sleep, though, as that is due to the long list of physical symptoms that massively disrupt it.

And, disappointingly, the individual support seems to be just one phone call a month, with someone who doesn't seem to know much more about diabetes than I already do, and certainly knows nothing about my specific health issues. And so far it's turned out to be with a new person each time, as each time the previous person seems to quit the job after talking to me!

Been three calls with three different people, each one had to be 'rescheduled', the first time because they called the wrong number, the second two times due to the previous person leaving, so it's been more like a call every 6 weeks. I assume it's not me driving them away, and that it's more that they are people on low pay and casual contracts who have been through some quick training course themselves - hence the high turnover.

The whole on-line lessons thing seems a mite patronising, frankly. Sometimes extremely so. E.g. the 'healthy eating on a budget' lesson, which includes such gems as "buy food from a large supermarket, not a corner shop, as the latter tend to be more expensive" and "own-brand labels tend to be cheaper".

On the upside I have managed to lose a few Kg just by clambering back onto the 'healthy eating' wagon (that I fell off a few years ago). But it's very slow progress, and the icy temperatures don't help.

I'm still feeling neurotically worried about a whole host of issues, though. E.g. am still suspicious that I might have Sjorgren's. The dry mouth continues, as do a whole host of weird and unpleasant sensations in my head (like a chronic feeling of concussion with nausea and strange feelings of pressure, but also including occasional bouts of vertigo where it feels like the room is spinning or gravity has flipped 90 degrees)... and I read that there's a form of auto-immune meningitis associated with Sjorgren's that might cause such symptoms.

Or perhaps it's an after-effect of the hydrocephalus and the brain surgery? Doesn't seem as if the diabetes avoidance people really can tell me much about these issues. Alternatively I worry that maybe the pre-diabetes has already developed into full diabetes (and that that is causing the dry mouth?). The fact that a close relative was just diagnosed with actual diabetes (with an HbA1c score well into the diabetic range) at the same age I was when I started this thread!) isn't very reassuring.
 
Sorry to hear that the online and one-to-one support has been a little patchy and uninspiring @ANeutralName :(

You’ve been living with these symptoms for a long time, and it must be exhausting for you not to have much in the way of definitive answers yet :(

Do you get your HbA1c checked regularly? Is there a mechanism for you to request a new check at your surgery - just to put your mind at rest about that if nothing else!
 
Thanks for the reply.

I'm trying to summon up the energy to see the GP again. I have a long list of things I want to ask, but the last three appointments I had were not very helpful (the GP I had pre-pandemic, who made the referral that led to finding the brain cyst, was the first one I'd seen in years who actually made an effort, and they apparently then quit the job as a result of the stress of the pandemic. I have seen three different new ones since, and they were all rather dismissive and even noticably tetchy and bad-tempered - two of them then left the practice as well...I seem to have a superpower of inducing people to quit their jobs!).

Seeing if my blood sugar has improved at all is one thing I want to ask about, but I'm rather pessimistic that I can avoid getting diabetes. It's a real struggle to lose weight while feeling so unwell.

Also, I'm still suspicious that there's something else wrong. The sensation of chronic 'concussion' is seriously unpleasant. It feels like I've recently been bashed over the head with a hammer, and though the brain surgery was over 3 years ago now, it seems to be getting worse rather than better.

Perversely, some part of me kind of hopes things will get worse, such that it will become obvious what the problem is and I might get a diagnosis. I really don't want to end up developing diabetes on top of everything else, though.
 
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