I have cross-posted this from the Adrenal Disorders board on this site. Sorry it is so long but I hope someone will be patient enough to read it and share their thoughts.
Hello. I'm a 22 year old female and I'd like to share my story. The bulk of my symptoms started about two years ago, although it is hard to tell when many of them came on since it all feels so gradual.
Previous medical history: I had my gallbladder removed at age 16. Sometimes I have tested as slightly anemic (e.g. I have been turned away from blood banks for being too anemic to donate). Whenever my blood pressure is tested it's always on the low end of normal. I have no family history of diabetes or cancer. My mother has hypothyroidism, rheumatoid arthritis and fibromyalgia.
The first symptom was severe fatigue and hypersomnia. Randomly, for a few months at a time, I'd have these "sleeping attacks" where my body feels the need to sleep like a rock for up to 14 hours at a time. It is extremely difficult and a long process to get out of bed on these days; my muscles feel like they are full of lead and I can barely move until I've spent an hour or two laying there and "waking up". It happens whether I take sleeping pills or not. Throughout the day I never feel like I truly wake up, I feel very foggy and braindead. Sometimes I'll even take a 2-3 hour nap later in the day.
In July 2011 I had some bloodwork done (CBC, CMP, thyroid) and everything was in normal range except my blood glucose was 61. I was not fasting when the blood was taken; I can't remember but I think it was about 3 hours after breakfast.
In spring 2012 I was still feeling crappy when several other symptoms began to onset:
-Chronic itchy skin all over body, no rash or marks at all, mostly happens late at night
-Orthostatic hypotension (I've had this since I was a kid, but it got worse)
-Shortness of breath for no apparent reason, or on mild physical exertion
-General dizziness, muscle weakness
-Aches and pains all over, especially joint pain
-Extreme cold intolerance, some heat intolerance
-Random numbness in limbs; they also "fall asleep" extremely easily and intensely
-Losing head hair, not in chunks or anything, but I feel like I'm shedding excessive amounts. I naturally have very thick wavy hair, and it definitely feels a lot thinner than it did a few years ago.
-Upper abdominal pain - occurs daily but in random spots below the ribs and on the sides.
-Lots of new freckles despite wearing sunscreen regularly. My hands and knuckles are noticeably darker than the rest of my skin. Weird patchy areas of tanning on my legs and arms, mixed with small "white freckles" (vitiligo?) Small scratches on my skin turn into brown scars. My elbow creases are brown to the point where it kinda looks like I have bruises there.
The abdominal pain really concerned me, because although it was not very intense, I could pretty much feel it all the time. So I went to urgent care in August 2012 and the doctor there ran a ton of bloodwork and referred me for an ultrasound.
Again the bloodwork showed my glucose was low at 56. My blood was drawn 2 hours after eating a breakfast of Kashi cereal and raw mango. The only other thing of note on the blood results was my calcium was borderline high (10.0). My ultrasound was "completely normal."
Oddly, after this, my abdominal pain lessened a bit. I still feel it every day, although it is not a constant low-grade ache, it tends to come in bursts where it comes on for a few minutes, goes away, comes back a bit later. It is sometimes dull and sometimes more sharp. It is not really associated with gas pain, or eating, or being in a particular posture. The only thing I can possibly associate it with is that it tends to hurt worse when I am anxious or stressed. I still have all my other symptoms.
I was still worried so I went to see a gastroenterologist. He was concerned about the hypoglycemia, and agreed with me that two instances of low-glucose probably isn't a fluke. He wanted to rule out celiac disease so he scheduled me for an endoscopy. The endoscopy was normal and proved I don't have celiac disease. His conclusion was that he had no more imaging/GI work to recommend, and that I should see an internal medicine doctor next. He said my symptoms may hint at a "systemic or neurological disease".
Well, here I am now, trying to get an appointment with a regular internal medicine doctor/PCP, but in this town they are all booked up for 2+ months, just for a simple physical! I have an appointment scheduled for the end of December but I hate waiting so long.
I recently bought a glucose monitor. Figured it'd be good data to have while I wait to see the doctor. After doing it semi-regularly the past week or two, so far my fasting (morning) BG is low 70s to mid 80s, and post-meals (either one or two hours after) is mid 70s to as high as 120. Even one hour after eating a sugary dessert, it's never been higher than 120, so I can probably rule out diabetes, right?
Anyway, I'd like to compare my symptoms with those of you who have adrenal insufficiency. Did any of you have abdominal pain like mine before you were diagnosed? If you have had an adrenal crisis, can you describe in detail how it onset? In case I do have this, I want to know what to look out for. Also, if it is not adrenal-related, what are some other diseases that match my symptoms? Thanks for reading and for your time!
Hi there. I definitely think that you should see an internal med dr. and maybe a rheumatologist.
Have you ever had any bloodwork for autoimmune diseases? I have had very similar symptoms over the past 4 years and they think I have an autoimmune disease - probably lupus and/or ankylosing spondylitis. Definitely look into the low blood sugar - I had major problems with it 2 years ago and I just ignored it beyond having it retested and it was still low, but I had had protein also in my urine and it went away. Now that I have been severely sick for 9 months I wished I had listened to my body before when it was giving me hints!
Definitely see if they can do some antibody tests - such as ANA, RF, CCP, ENA panel, ESR, hsCRP, and maybe ask them to check an insulin level? There are things like an insulinoma that can make you have low blood sugar in spurts.
I really don't know what could be causing the abdominal pain. I hope you find some answers and get some guidance and feel better soon!