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Hello... Another confused one :/

L

LittleWolf

Well-Known Member
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677
You've had 1000 of these posts I'm sure, so bear with me. Or just skip to the lower end of my intro...

My name is Eboni, I have aspergers syndrome, I'm into animals and all areas of the arts. Lots of random freelance jobs. PM me to get to know me in detail

I have a complex medical history and a shed load of symptoms from unexplained skin conditions to flu like muscle pains that may or may not be related. I'm kind of sick of going to the doctor trying to look at all of them one at a time, with months between referrals or going between a doctor and the hospital and they have forgotten everything in my notes or they are missing or they have no record of me ever being admitted and I have to explain everything all over again @_@

I'll only spill what seems to be relevant from this discussion so I don't bombard you all, but I will say the stuff to do with blood sugar.

I have PCOS. Type 2 diabetes runs in my family on both sides. Most recently my uncle first lost his leg 3 years ago, then I lost him.

I used to be bulimorexic (from about 13) and would go between 12 and 48 hours without eating, or purge if I ate one or two normal meals a day. I cut out carbs and dairy to lose 30lbs in 6 months. I have a history of depression, anxiety and panic attacks and my psychologist said she thought some of my extreme swings were to do with hypoglycemia.

I kind of kept myself awake with sugary things as Id fall asleep/get dizzy in class or on public transport. Not good, I know.

So friends and family (including a type 1 diabetic who likes to stuff me) have been telling me to eat, eat, eat. You need carbs! My grandma has been watching my levels as she is diabetic.

The confusing thing is my fasting BS is often on the high side (7s) if I have actually been eating that week, or sometimes when I haven't eaten in 12-24 hours. After a meal like a slice of toast my BS will be around 10-11 at 2 hours later and back towards 8-7s 4 hours later. Doesnt sound like i need more carbs. Between 10 minutes and 4 hours after starting a large or naughty meal (a quarter pounder or a bar of chocolate) I feel like **** where this used to be a pick-me-up and test 2-3.1 @_@

So basically most of the time high-ish, with occasional dips into low and crashes where I'm a shaking, puking, half-blind wreck after a big meal. I've been told my fasting and pre meal levels make me sound more on the Type 2 side, but the horrible, frightening low after a meal sounds like reactive hypoglycemia from the little I know. Mixed opinions on whether it's possible to have both?

I'm probably floating in some unclassified category but I don't really know what to do. Terrified of weight gain with PCOS if I eat, scared of Hypos if I dont eat, scared of hypos if I do eat! @_@

Oh yeah, I'm 20 years old, 5ft 1, 107lbs. I used to do horseback riding, trekking gymnastics, ballet, ice skating, badminton and a lot of cycling until endometriosis pain and lethargy kicked in 0_0 Now I do slow barre exercises before bed and walk a lot to travel to/from classes. Another reason I am terrified of how squishy I get around the waist the second I eat.

Thanks for your time, company and help x I know I should really just go to a doctor AGAIN and ask specific questions in other sub forums, but it'll be a big help to keep anything looking at the whole picture in one thread for now. Hope that isn't a problem :3



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Hi little wolf wow u have a lot to deal with!

Welcome to the forum first of all. Second of all, based on my own personal experience and research you don't fit the bill of a typical type 2 diabetic. That's not a diagnosis that's just from the research I've done you seem both too young and too slim to fit the type 2 typical criteria although type 2 is said to be genetic and it's not a condition where one criteria fits all!

There is a genetic form of diabetes called MODY (you can search this to get more info and look around the forum) which is said to be hereditary and has to do with a certain gene or genes and there is also type 1.5 which is where I am. Type 1.5 is basically late or slow onset type 1 where, for some reason allegedly stress or illness, your immune system attacks your insulin producing cells and kills them leaving you with not enough insulin production.

Both of these types can be diagnosed with more in depth blood tests, has your doctor mentioned that they are running further blood tests on u? Usually when a young, non-obese patient has a diabetic BG they do the full blood tests but this might not be the same in all locations. If they haven't then it may be worth your while writing down a few questions such as these for your next appointment :-)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Hi LittleWolf and welcome to the forum, Elaine is right that you dont fit the normal criteria for a T2 but she may be unaware of the effect that PCOS has on the human body, I too am absolutely no expert on PCOS either but I do know that it causes insulin resistance which is a primary symptom of T2 diabetes.

Your T1 relative is correct that you do need to eat regular meals but no T2 needs lots of carbs and I'm sure that PCOS sufferers are no different if you have insulin resistance then a reduced carb diet will do you no harm and will almost certainly help but you will probably need to eat some carbs as a very low carb diet is extremely hard to stick with long term, something very few manage.

I feel you really need to talk to someone who understands both conditions and I'm sure they are related as PCOS causes insulin resistance which leads directly to T2 diabetes, just as my own diabetes was caused by long term Prednisolone (steroid) use.

Hopefully someone else who knows more about PCOS will answer your request for help and may be able to offer some useful advice based on first hand knowledge but until then all I can offer you is my sympathy and support. This is a great forum and I hope you get the help you need :D

Good luck Littlewolf I genuinely hope you get some useful answers from someone more knowledgeable than me.
 
Thanks alot for your responses guys x

I'm still kind of confused as there is also relatively little information on LADA, MODY, T1.5 etc... My dear friend is T1 but the journey towards it he described sounds almost exactly like how I've been this year. I worry with the insulin resistance my pancreas will eventually do what his did and say 'screw this' altogether. @_@

It's frustrating that he has a voracious appetite (As can I when I get cravings) but this skinny man somehow eats mountains of sweet, sweet Mcdonalds and takeout, takes a shot and is cool, whereas I can't stomach it. If I do eat half his portions I'll have a crippling low a couple hours later. It's actually caused alot of fights because he wants me to get over my fear of fat, but I know too many people with PCOS who got really fat and their symptoms worsened etc etc. He just loves pigging out and stuffing me...

No one 'wants' to be a diabetic but it might explain a whole bunch of things I have gone back and forth complaining of and I never got to the root of the cause between 5 GPs and 4 hospitals, a rheumatologist, psychologist, dietician, urologist and many gynos

Instead of looking at everything individually it might be worth pressing for full bloodwork and presenting ALL this stuff at once.

Acanthosis nigricans
Tingling/burning lips
Mysterious rashes everywhere
Recurring tinea versicolor, thrush, lichen planus and infected spots/cuts that don't want to heal :/ Unsightly. I had a deep infection under my arms for about 3 years, patches that just kept bleeding and weeping pus...
Pins and needles feeling in my hands and feet
Blurry eyes sometimes
Bout of extreme fatigue, nausea, muscle aches, joint pain
Mood swings
Headaches
Palpitations and shakiness
Dizziness intensifying on standing
Confusion
Waking up feeling like the above at some retarded time in the morning and throwing up.
Weird nerve pain in some places and loss of sensation in others in my pelvis... and 'down there'. Kind of ruining my relationship and I've only just started dating at this age >_< Could be endo
Twitchy leg muscles and painful spasms in intercostal muscles that make you want to die rather than breathe
Needing to pee alot, but I have endo on my bladder so the 'toilet signal' is just PAIN
Swollen glands... or something is swollen just about all the time

Just a few fun things.. but if a number of those are related to my blood sugar control (or lack) then that means a number of things can be fixed at once... which is a positive right?

I'm still not exactly sure what's going on, as I'm sure my BS does funny things in the night, too. 'Odd' feelings have woken me up before... Thinking of testing at more regular intervals and finding out exactly how the hi-lo rollercoaster is moving and reducing carbs. As much as I hate the though. I spent years not touching them, then I get back to a healthy weight, then the PCOS symptoms and these hypos start. *shakesfist* It was nice enjoying bread again for a year or two, but I guess what has to be done, has to be done.

Just got to not go crazy and end up back at my tendency to obsessively calorie count and starve myself, but not snap and binge on them after that either. Balance, balance, balance... I never thought of a hypo as a reaction to too much sugar/carbs, but looks like that's the case.

I'd better get looking for someone who knows more about PCOS. I didn't get much direction other than 'oh, by the way, you have Polycystic Ovary Syndrome.'

Thanks a bunch guys. I'm sure this forum will be a great resource and I'll make some friends who get how I feel too. There's a real emotional side to this stuff and it is a huge help knowing someone understands x
 
Hi,

Sid is right, I'm no expert on PCOS other than that my sister was diagnosed with it when she was 15 due to struggling with her weight and producing too much testosterone....that's about all I know, very limited.

However, although I am type 1.5 I am currently taking Metformin which is a known type 2 medication and my diabetic nurse told me that type 1.5 patients can have lack of insulin as well as some resistance....that being said, Metformin just helps your body use ur insulin better so it could just be that it's maximising on the insulin I am producing, which is enough to cope with my current diet... Good idea to ask for full bloods though as ur right and a lot of the problems you described are symptoms of uncontrolled diabetes (any type!) and hopefully getting it in control will help you feel better :-)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Thank a lot for the help. I did recently stumble upon that article but my doctor thinks I'm a hypochondriac because I'm too young and slim to have anything wrong with me. Let alone be diagnosed T2 and hypoglycemia that's considered anomalous on top of that 0_o

I will show her the article if/when she will actually book me in for those bloods. I mean I'm at risk by at least 3 factors and have so many symptoms. If its not diabetes you'd think they'd want to work out what IS wrong....


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Also, I'm not on insulin.

I found another article about someone newly diagnosed with T2 but she had hypos, but I can't find it. Maybe the borderline phase is where people see fluctuations then just highs unless they take too much insulin or something. These hypos happen when I eat like a normal person, after a couple years of no postprandial symptoms after years of not eating... Ever. At least the hypos made sense then. Of course my blood sugar would be low, I wouldnt eat for like 3 days. Arrg...

I'm sorry you guys are probably sick of my moaning now...


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