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carzy · 09-09-2012, 01:20 PM

Hi everyone,

I have had weird issues lately: I am a 24 y/o female.
recurrent infections (weird bugs like Group B strep - usually only infect ppl with diabetes, cancer or during pregnancy), I can't sleep past 4 or 5 am (EVERY day for at least 2 months!), wake up extremely thirsty, very nauseous and sometimes dry heave, with a weird taste in my mouth and smell in my nose, I pee tons during the day and night, mild ankle edema at the end of the day, and I have lost 9 kg of weight over 6 months very unintentionally, I feel starving but eating makes me feel sick so I am probably eating the exact same amount as before, joint swelling and 2 week late menstrual periods.

About a year ago I was getting a bad fever and passed out in school and the nurse found my glucose to be 1.9 mmol (REALLY LOW!!) I can't believe she sent me back to class, I didn't really remember anything and I couldn't hear or see much. I somehow took the train to my parents and my mom took me to the hospital, I had blood in my urine and a fever of 38.3 but no bacteria or anything in my urine but they put me on antibiotics anyways. I had almost reactive hypoglycemia for some months after that. I did a fasting glucose and 2-hour PC at a lab March 2011 and my fasting measurement was 3.9 and my 2 hour PC was 3.5, and I was quite shaky, dizzy, cold, etc. after eating during this time. They did think that it was weird because usually people with fevers get high blood sugar. That all sort of sorted itself out last year and when I feel normal my fasting glucose will be around 4.5.

I started getting sick in February 2012. It started with a weird sinus infection I think might have been fungal. In my blood work since February my fasting glucose has always been around 5.5 now. I have had several ER visits where my blood glucose is around 5.5 and I have a lot of ketones in my urine, but it seems like the ketones are randomly there. I have also had hypokalemia (low potassium) pretty much every time I feel bad enough to go to the ER. They have tentatively diagnosed me with incomplete lupus, but they are really not sure but are not looking into anything else. I have been suspecting that I have some sort of endocrine dysfunction but I am having a hard time getting doctors to investigate anything beyond lupus. I once had a low TSH, otherwise is is pretty consistently at 0.4.

I bought a blood glucose monitor and it seems like I have a lot higher glucose in the morning and it goes down continually all day no matter what I eat. I feel absolutely awful in the morning when it is high and then okay around 11am, and then progressively more awful over the day when it is low.

Do you think that this could be the "honeymoon" stage of autoimmune diabetes? I really want my doctor to test my cortisol and aldosterone as I have read that they can cause similar problems and problems with insulin as well, but I can't seem to convince her to do any more tests, she would probably be mad that I bought a glucose meter. I don't know how to get help for what I have been going through so if anyone has any suggestions on how I could try to effectively communicate with my doctor that would also be appreciated.

Anyways thanks a bunch if anyone has any insight !!

I just wish I knew what was going on with my body, endocrine issues are so complex as are autoimmune conditions

ladybud · 09-09-2012, 02:15 PM

My intial thought would be to get a referral to an endocrinologist, so you can get your blood sugars and adrenal function sorted out. People with hypoglycemia often develop diabetes. The weight loss, starving, peeing a lot and thrist are all symptoms of diabetes. I would ask your Dr to check a hemoglobin A1C, which will give you a better overall picture of your sugars. The fact that you are showing ketones goes with diabetes. The blood in urine could be from lupus, and if you have protein in urine, could relate to lupus and cause swelling. I would see a rheum for eval of the lupus. I find it distressing that your Dr refuses to test for things you request, and that she would be mad about you getting a glucometer. Can you find a new Dr? In Canada, can you see a specialist without a referral? I hope so.

carzy · 09-09-2012, 06:34 PM

Thank you for your reply! I just got the glucometer this morning as a nurse the other day suggested I graph the trends in my bloodwork. I feel useless and like I want to be doing something to try to figure this all out, so it seemed like a good idea.

I also find it a bit disturbing that my GP refuses to test me for things I suggest, it leaves me stuck, with so little options. I used to really like her before I got sick - but I think that my illness has scared her and confused her and now she is really not working either for me or with me. She doesn't believe that any of my symptoms and illnesses are related for some reason. She would probably view the glucometer as me being too worried about my symptoms, I feel like it is helping me to be more empowered in my healthcare and my symptoms probably worry me more when there is nothing I can do. I think that most doctors assume that young people are automatically healthy, and they have a hard time understanding when we are not. I do have a rheumatologist that I saw a couple months ago that was helpful - but she was in a different city. I saw one in my city a couple weeks ago, lupus unfortunately takes a long time to diagnose and I find they only cared about the "lupus" type symptoms. I have been on plaquenil for 2 months and I find my joints are a lot better but these other things are slowly getting worse and are impacting my life more than my sore joints were.

I have to wait 6 weeks to go see the rheumatologists again. I have even been going to a psychiatrist weekly since my illness started just to prove to my family doctor that I am not too anxious and my symptoms are real. My psychiatrist told me to go to an urgent care centre once because I was pale as a ghost and felt awful and my GP got mad that the psych had suggested that! At urgent care that day they diagnosed me with a bowel obstruction! My GP recently talked to my psychiatrist and told me that the psychiatrist was not helpful - probably because my psychiatrist believes that I have a physical illness and likely/hopefully told my GP to her to do her job.

I agree that an endocrinologist referral would hopefully be helpful. My glucometer saves my readings and has a function that averages them - the website for the glucometer says that the average provided is similar to an A1C level - I might just take it in once I get enough readings and a copy of all of my blood work from the past few months to a walk-in clinic and ask them if they can refer me to an endocrinologist if my GP won't. I will try suggesting an A1C to my doc. I have seriously considered going to the US for diagnostics. It really sucks how much power doctors have in Canada, they are so protected and get paid no matter if they do anything to help you or not.

Canadian healthcare really sucks sometimes - it is hard to find a family doctor at all (millions do not even have access to one) and then wait lists for specialists, tests and procedures are ridiculously long. My GP only works 3 half days a week, but I still feel lucky to have one at all. We do need referrals to all specialists which is unfortunate.

Hopefully tomorrow I can test and find out if I am waking up very early and feeling sick and nauseous from my sugars. Thanks a bunch! I will maybe bring someone for support when I go back to the doctor.

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