Hello and thanks for taking my question.
I would wondering if you could tell me if I may possibly have an endocrine problem of any sort, thyroid, adrenal, or otherwise.
Since about May I've had a dull headache, attacks of terrible vertigo, and confusion that won't go away. The headache is very stubborn and unchanging and allways present.
I have had a huge workup, including about 25 blood tests for ANA, lyme, lupus, lyme, thyroid, hiv, hepatitis C, and on and on. Negative MRI and MRA and SPECT of the brain. (except for a 3 cm extra-axial lesion just adjacent to the left orbit, which all 3 of my doctors (primary, Neuro, and ENT) are deeming inconsequential). The SPECT report says that it is "most likely fibrous dysplasia"
Some remote possiblity that's crossed my mind is something that might not be being picked up by blood tests, since I've only been scanned from the neck and brain, such as an adrenal tumor or something totally different that isn't readily obvious.
As a final thought, is it a possibility that my doctors are hesitant to say the "fibrous dysplasia lesion" is causing my symptoms because they are afraid that if they do surgery and I don't improve that I will be angry, and that they are waiting on me to insist on surgery? Please tell me honestly if my thinking is screwed up here, because I am desperately searching for an answer to my symptoms with no luck. I just don't know where to turn to anymore, I have passed the point of desperation.
Did you mean 3mm or 3cm? - big difference in addressing brain masses (lesions). I am assuming 3mm based on the neuro and ENT input.
An adrenal tumor that has endocrine function needs first to be documented with labs then identified with imaging -- additional imaging at this point would not add to the endocrine evaluation.
I do not know much about fibrous dysplasia. If it is really 3cm (ie over an inch in size) then based on size alone I would recommend a consultation with a neurosurgeon. The symptoms seem to point more towards the central nervous system than the endocrine system based on what you've presented.
While it is always possible that there is an endocrine problem it seems less likely. Headaches may be due to adrenaline producing tumor and usually patients have palpitations, anxiety and high blood pressure -- screen for this with a blood test for plasma free metanephrines. There does not seem to be a pituitary tumor so would not necessarily order all the pituitary labs (ie, TSH, T4, IGF-1, Prolactin, ACTH, cortisol, LH and testosterone on an 8am blood draw).....
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