not my thyroid

[illinwithoutacause]

i went to see the rheumatologist earlier today and didn't get the news i had hoped for.  although my thyroid ultrasound did show some abnormalities, my bloodwork was negative for autoimmune thyroid disease.  she wants me to see an endocrinologist to follow up on my thyroid, but that is not an explanation for what is going on with me.

the best thing she said to me is that she really believes there is something going on, which was a relief.  she is now pursuing additional bloodwork to test for autoimmune processes on a cellular level as opposed to the other testing i had which checked for antibodies.  she is also putting me on plaquenil, a medication used to treat the inflammatory processes involved in lupus and rheumatoid arthritis, to see if it helps.  i am a little scared of that medication, but we'll see how it goes.

i tried really hard not to get my hopes up about all of this being the result of a treatable thyroid disorder, but there was a part of me that saw the light at the end of the tunnel.  i am feeling pretty disappointed and pretty numb right now.

binx

[silkcut]

Uh ho, binx - I so understand your disappointment and numb-out.

It really does feel like one step forward and a hop and a skip back a lot of the time (or maybe that should be a shuffle and a clonic jerk....? ;-). When I read 'plaquenil', my few remaining brain cells went straight to lupus (my sis has it and has taken this med - sparingly).

Thyroid would have been soooo much easier in many respects. The saving grace, I guess, is that your specialist is certainly intent on getting to the root cause/s.

bestest
samx

[illinwithoutacause]

thank you for your note, theresa.  you know, i used the square one term with my doc last night and she tried to reassure me that in spite of still not knowing precisely what is at issue, we have truly made progress.  i can kind of see her point, since we have a longer list of knowing what is NOT wrong with me that we did even 4 months ago, but it is still maddening to be in this boat, as you well know.

i haven't explained this yet, but one of the reasons why she wants me to take the plaquenil is due to what she referred to as "vasculopathy" or vascular irritability that has presented in my neuro-optho exams.  the vasculopathy is actually one of the only things all the doctors have been able to find wrong with me, besides my c-spine problems.  at any rate, she said the plaquenil could help to arrest or possibly even reverse the vascular issues which is important because it puts me at risk of stroke.

(gosh, it feels scary to articulate that.)

sooooo, that's the only reason why i'm willing to try the plaquenil.  i am really sensitive to meds, and normally avoid them at all costs, so i am anticipating some rough sledding ahead.  she said if i hate it, to call and let her know right away.

anyway, just thought i'd fill in some blanks.

i hope you are staying warm and safe in the face of all the wacky weather!
best wishes,
binx

[StormyRenee]

Hi binx,
Well atleast the docs still trying...This autoimmune crap is soooo dificult. I'm sorry you are back at square one too.
I have to be honest, I dont know if I would take plaquenil without knowing whats going on.
I do hope you get some answers.....
Please Take good care of yourself and keep us posted....
xxxxxx Theresa