Diagnosis Trouble

[LittleWolf]

Ugh. Obviously no one WANTS to be diabetic but I'm having trouble being take seriously. I am going to sound like a hypochondriac, just letting you know...

5ft, 105-110lbs, 20 years old, Caribbean.

I have a long history of repeated skin infections/fungal infections/rashes, digestive problems etc. Used to be anorexic and had hypoglycaemia, 'managed' by eating lots of sweets to stay awake/relatively sane. Since I've reached a normal weight suddenly my PCOS became apparent and I feel weird after eating. Makes me so frustrated and I'm so scared of becoming obese like typical PCOS sufferers I feel like just going back to bloody starving myself.

Seeing as T2 runs in my family, first my grandma would test me periodically and now I have my own meter.

The hot flushes, headaches, episodes of pissing buckets, dizziness and episodes of waking up shaking, sweating and puking everywhere, falling asleep after meals and extreme mood swings/anxiety etc etc seem to correlate with readings I'm getting that I think aren't quite right. On top of that I'm dealing with pain from Endo for which I'm STILL waiting for a laparoscopy, get horrible muscle aches, pins and needles at random times and I'm self conscious of Acanthosis Nigricans which just looks like I haven't washed myself properly...

So basically fasting readings aren't all that bad. Usually 5.7-6.7

What bothers me is post meal readings usually 8-10.4 2 hours after meals (I don't usually test at 1 hour but often its around 11) but lately I've had spikes of up to 15.4 like today a while after having a cup of sparkling grape juice.

What's confusing is I can also have extreme lows, like one night I woke up feeling like I was dying, had some toast and sweet tea and I was starting to feel better at the point I tested 3.1 so god knows what it was before. I'd been puking all night and my test strips only arrived early that morning after the toast...

So I've got highs AND lows. It's affecting my moods, my study, my already conflicting feelings about food/weight, my already low self esteem and my already screwed up sleeping pattern from depression.

Every time I call the doctor about the symptoms they never get to the bottom of it and shrug their shoulders 'You're 20, you /should/be fine.' Well I'm clearly not. When I finally did outright ask they check my levels (because of the genetic disposition etc) they blew me off. Last time they said they've requested a test but god knows how many month's time that will be.

I'm in and out of hospital several times a month because I've collapsed or thrown up or just drifted off on the way to/from school (like on a busy train station platform-scary) Just hoping if they actually diagnose me a good number of those problems will go away with treatment, because I've had them for many years without a **** decent explanation and I'm already WAY behind on my studies....

My T1 friend has better numbers than me >_< And he eats so much junk food!

Sorry. That was a half-rant, half asking people with any experience of doctors ignoring a young, slim woman and/or the long term effects of PCOS or eating disorders on blood sugar regulation.

My T1 friend has better numbers than me >_< And he eats so much junk food!

Thanks for your time, anyone who read all of that... *frustration*


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[Daibell]

Hi. One possible thing to consider is the MODY variant of diabetes. It isn't very common but does result in great blood sugar swings. Perhaps you could suggest this to the doc?

 

[LittleWolf]

A few people have suggested MODY. I did not realise it causes swing so I will attempt to mention that as a possibility without sounding crazy at my next appointment.

Well the highs combined with lows were perplexing me so it's good to know it happens and there must be ways to manage both the high and low end right? High is uncomfortable. Low is... Ugh. Intolerable and scary.



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[Geocacher]

What you've described if typical of PCOS. You can manage PCOS successfully, but you will probably have to insist on appropriate treatment. Unfortunately, most GPs seem to think that it's self inflicted just like T2. It definitely is not.

Metformin is one of the best treatments, make sure you get the slow release version. Stick with it, the side effects go away in a few weeks. It tempers the highs and lows and makes regulating your blood sugar much easier. Acanthosis Nigricans should fade, hair problems should get better, and your periods should become regular and easier. Ask if you can also take finasteride, it's normally only prescribed to men for a completely different reason, and you cannot take it if you are at risk of becomming pregnant or trying for a baby, but for some it really helps with PCOS symptoms and you can stop taking it if you do want to have children.

Ask your GP for a referral to an endocrinologist to help sort out your problems, an endocrinologist is going to be better informed about PCOS, and various other endocrin problems that could complicate it, and also about diabetes.

You can find more information on this forum:

http://www.soulcysters.net/

 

[LittleWolf]

Thanks so much for the information! I will ask my GP to consider those medications and I'm filling out a HC1 form being a poor student lol

Just want to nip this in the bud/ don't want to put on weight OR become completely scared of eating again. Nice to know Im not going crazy with the swings. Have not heard of that second drug so I'll look it up.,


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[jennyleach]

Ugh. Obviously no one WANTS to be diabetic but I'm having trouble being take seriously. I am going to sound like a hypochondriac, just letting you know...

5ft, 105-110lbs, 20 years old, Caribbean.

I have a long history of repeated skin infections/fungal infections/rashes, digestive problems etc. Used to be anorexic and had hypoglycaemia, 'managed' by eating lots of sweets to stay awake/relatively sane. Since I've reached a normal weight suddenly my PCOS became apparent and I feel weird after eating. Makes me so frustrated and I'm so scared of becoming obese like typical PCOS sufferers I feel like just going back to bloody starving myself.

Seeing as T2 runs in my family, first my grandma would test me periodically and now I have my own meter.

The hot flushes, headaches, episodes of pissing buckets, dizziness and episodes of waking up shaking, sweating and puking everywhere, falling asleep after meals and extreme mood swings/anxiety etc etc seem to correlate with readings I'm getting that I think aren't quite right. On top of that I'm dealing with pain from Endo for which I'm STILL waiting for a laparoscopy, get horrible muscle aches, pins and needles at random times and I'm self conscious of Acanthosis Nigricans which just looks like I haven't washed myself properly...

So basically fasting readings aren't all that bad. Usually 5.7-6.7

What bothers me is post meal readings usually 8-10.4 2 hours after meals (I don't usually test at 1 hour but often its around 11) but lately I've had spikes of up to 15.4 like today a while after having a cup of sparkling grape juice.

What's confusing is I can also have extreme lows, like one night I woke up feeling like I was dying, had some toast and sweet tea and I was starting to feel better at the point I tested 3.1 so god knows what it was before. I'd been puking all night and my test strips only arrived early that morning after the toast...

So I've got highs AND lows. It's affecting my moods, my study, my already conflicting feelings about food/weight, my already low self esteem and my already screwed up sleeping pattern from depression.

Every time I call the doctor about the symptoms they never get to the bottom of it and shrug their shoulders 'You're 20, you /should/be fine.' Well I'm clearly not. When I finally did outright ask they check my levels (because of the genetic disposition etc) they blew me off. Last time they said they've requested a test but god knows how many month's time that will be.

I'm in and out of hospital several times a month because I've collapsed or thrown up or just drifted off on the way to/from school (like on a busy train station platform-scary) Just hoping if they actually diagnose me a good number of those problems will go away with treatment, because I've had them for many years without a **** decent explanation and I'm already WAY behind on my studies....

My T1 friend has better numbers than me >_< And he eats so much junk food!

Sorry. That was a half-rant, half asking people with any experience of doctors ignoring a young, slim woman and/or the long term effects of PCOS or eating disorders on blood sugar regulation.

My T1 friend has better numbers than me >_< And he eats so much junk food!

Thanks for your time, anyone who read all of that... *frustration


Some of my children and grandchildren have the MODY gene of diabetes and it sounds very much like you describe. Definitely you should ask your doctor BUT don't be surprised if they don't know what it is. My diabetic nurses didn't. Read as much info as you can on the internet and books and take into the doctors as much printed info as you can! Best of luck

 

[LittleWolf]

Thanks very much for your experience and input

Another suggestion of MODY.. I wonder if other slim girls with PCOS and prediabetes/diabetes who dont fit the T2 profile (overweight, older etc) have MODY

I've heard a lot from them of having both highs and occasional sudden lows. I was asking my T1 friend and he doesn't really know much about other types and thought my number fluctuations make no sense. It seems is is not that uncommon at all (thus relatively easy to fix, right?)

I'm frequently between 10 and 16 now after meals but it goes back down to 7 by the 3 hour mark. I'm going to ring the Doctor's office AGAIN and ask what they think. My worry is that those numbers will get worse and Im 'tiring my pancreas out'. I find hyperglycemia very uncomfortable now, it's 10, 20, 30 years from now I don't want this to be even problematic beyond the bunch of symptoms listed above... RantRantRant

Instead of ranting about blood sugar or the hyper/hypo symptoms I will try asking why no one has discussed my PCOS diagnosis with me or any kind of treatment. Maybe once they're reminded they will make a connection between insulin response and how ****** I've been feeling after food.


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[PhilT]

I should step away from the grape juice if you're experiencing uncomfortable highs.

 

[LittleWolf]

The drama over this grape juice.

The funny thing is I never usually buy grape juice (or grapes, there isn't much fruit in the household) because it's so expensive!

My T1 friend and I both have a thing for it, we both hadn't had it in at least a year and suddenly got an itch. Like 'God, it's been so long since I had that yummy stuff'.

So I had that high reading and spent most of the night throwing up. I hadn't heard from him on Skype and it turned out he'd also had an episode vomiting ad high BG (forgot to take his insulin) after having been to McDonalds and he got his grape juice fix. THAT MAN EATS SO MUCH JUNK FOOD BUT STAYS SO **** SKINNY. He's always trying to get me to eat more of his carby poison because I'm apparently too skinny >_> The embarrassing thing is also when I have high BG I sweat like crazy. I cant cuddle up and watch movies with him without running to the bathroom a) to pee and b) to keep washing my underarms/apply antiperspirant at least. Not very ladylike.

@_@

It was just yesterday I realized that grapes are basically just sugar and water without much fiber in them... I'm actually really really ****** off. Like I'm really craving it Just a taste and I want more >_<

Ugh, but we love it so much >_<

Sorry for further ranting... Suppose I'll have to find a sugar free cordial that doesn't taste so obviously like artificial sweeteners...

 

[Geocacher]

Here's a little trick I use with sugar free squash --

I keep a bottle of lime juice in the fridge and add a splash to a glass of sugar free squash when I make it -- Cherries & Berries from Tesco is one that tastes reasonably good. Mix it a little weaker than the label says and the lime juice gives the squash a fresh flavour and counteracts the overly sweet taste of artifucial sweetner.

I also love grape juice, can't touch the stuff anymore, way too much fruit sugar in it.

 

[LittleWolf]

Thanks for the tip!

I was just fantasizing over the thought of the (discontinued) cherry and lime Mountain Dew and how awesome a combination of berry flavor and lime would be. If it cuts the nasty aspartame aftertaste I will definitely give that a try. Never tried Tescos squash.

I still want to try the fancy stuff like Welche's... but I shall resist. I guess I should stop hating on my T1 friend. He might eat atrociously but the implications are worse for him if he doesn't take his insulin. He's the last person I should ***** to about how sick I am..

Maybe I've been just a bit self-absorbed with my problems 'MeMeMe' lately. 15mmol isn't going to kill me and I should be acting more sensible.

Thanks guys.. Going to try to be a better person.