From Regina, Saskatchewan, Canada:
I have type 1 diabetes (diagnosed at age two), Hashimoto's Thyroiditis (diagnosed at age 10) and celiac disease (diagnosed at age 22). I am a 24 year old female. I do not take any medications, just hormone replacement therapy in the form of insulin via a pump, and Synthroid.
Over the years, my control has been adequate, with an A1c around 7.0 after puberty and until present, although it is slowly increasing due to severe fluctuations in my blood sugars. I have been having severe control issues (periods of extreme insulin sensitivity) and severe fluctuations in both dosing needs and blood sugar levels themselves. I will often have my blood sugar increase or decrease in a matter of minutes, by large amounts. I am on a strict gluten free diet and tested negative for Addison's. Supposedly, my thyroid levels are "normal," although my TSH is very slightly elevated. I am not pregnant. I have no retinopathy or nephropathy.
As a result, I feel quite sick and have had various symptoms that cause my quality of life to be very poor. I regularly feel like I am going to pass out, as I feel lightheaded and nauseous. I also experience ringing in the ears, hearing loss, joint/leg pain, pain behind eye one eye at a time, seeing "bright orange spots", seeing black spots and dizziness upon standing, palpitations and racing heart (although sometimes my heart rate is slower than normal), headaches, weakness, and difficulty in what seems to be regulating my body temperature. I often will go from extreme hot and cold feelings, when no one else in the room is affected. I also find it hard to focus my vision.
I have had episodes where I have to go to the doctor, because I feel like I am going to keel over. My blood pressure appears to swing between high and low, for no apparent reason. It will be 90/60 one day, and on another day where I had to go to the Emergency Room, it was 170/109, RHR 160 BPM. Another time it was 130/54. What would cause such fluctuations? I can't see this as normal.
Previous results have revealed a continuously elevated bilirubin level (but all liver enzymes normal), elevated SED rate, and high CPK level.
What could I have? Is this autonomic neuropathy? Or, is this a specific neurological disorder? Is it stress related? What can I do and what options are available to me? Who should I see?
Please help. It is getting VERY hard to control my blood sugars and I feel very ill. Some days, I cannot get out of bed and I am often dizzy. I am young and don't want to live like this and suffer any more.
I would speak with your diabetes doctor and ask him to evaluate you for the presence of autonomic neuropathy. This includes orthostatic hypotension and gastroparesis. Also, have your hearing and vestibular system checked out. There are more symptoms than can be attributed to just one answer. Therefore, it may be a process of several problems under one heading. Neuropathy makes sense, but the diagnosis may require you seeing a neurologist and having some special tests performed.
I think your doctor has been correct in evaluating you for Addison's disease. I am glad that test was okay. However, a negative test does not leave you with an answer.
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