Hello! I really need some opinions as my parents and I are desperate.
I'm 18, and I have a pituitary microadenoma & adrenal insufficency, which has been treated with steroids for the past 6 years.
My thyroid levels have been a consistent normal-low for 6 years as well. (T4 at 0.9 and TSH 0.3) There doesn't seem to be a decline, and my endo does not feel the need to treat it at this time.
However, for the past 4 years, I have been having increasingly progressive muscle weakness. (?)
At first, I would go to school as normal and have to stay home after 4-5 days of activity because I couldn't get out of bed.
Now, I can barely shower without being completely bedbound. My parents have to feed me, help me to the bathroom, etc. It gets better if I rest, but as soon as I do anything, it flares back up again.
I also have muscle twitches all over my body and tingling. My muscles don't seem to physically be stiff because my parents can move me around; I just can't move myself. It has recently been affecting my jaw to the point where chewing is difficult, and I am having some trouble using my bladder.
I don't feel 'weak'... My joints just feel heavy and take a lot of effort to try and move. Pain used to be severe during these flare ups, but is now controlled with etodolac, low dose naltrexone, and cymbalta. At worst I get a little sore, but I'm usually in no pain at all.
I have had bloodwork done for multiple autoimmune diseases; all came back normal. MRI's of my brain and spine are normal except for the adenoma. We have seen a surgeron about removing the tumor as I have been having bad headaches that worsen with movement & am very fatigued, and he agreed... but he has been dragging his feet and won't call us back despite us contacting his nurse multiple times. He isn't convinced it's the source of my symptoms because it is very small. (I don't fit the 'typical' patient; I'm not overweight, my other hormones are within range/borderline, and my eyesight has not been affected. He has treated many pituitary adenoma patients.)
Could this be related to my thyroid, or is that a stretch? We read that myopathy can be a symptom of hypo, but as my symptoms are extreme with borderline labs, could this even be a possibility? I'm completely reliant on my parents and we are stuck as to what to do because no doctor seems to want to touch us.
We are also looking at mitochondial disorders.... Trying to get a referral to a mobility specialist + a new neruosurgeon for a second opinion. Thanks.