Friday, March 18, 2011

Filling In The Gaps

It has been over a month now since my last entry.
Life has been pretty challenging between then and now, but not all bad.
My Porphyria calmed a bit and we traveled to see friends and family...
Being with the ones you love is like food for the soul!

Then after returning home a respiratory virus took over our home and local community.
The curious connection I noted was that as I "cranked up" the juicer with fruits and vegetables I was able to "crank up" my immune system!
I never got the full-blown illness everyone else did, which was great!


As my immune system was going "full tilt" my Auto-Immune Thyroiditis became a big swollen issue of dysfunction... super tired...super weak...severe endurance...significant neck/ throat discomfort...then after about a week of this my Liver began to feel irritable and swollen...I began retaining fluid...especially in the abdominal area... Thankfully, I never developed any Porphyria issues this episode.

It appears that when my immune system is turned protects me from illness, but attacks my Thyroid too.
Then my Thyroid in its dysfunctional state forms an "unhealthy relationship" with my already burdened Liver causing increased malfunction.
The "Up Side" to all of this is that as my immune system gears down after the threat of illness is removed... my Thyroid reduces in size and improves functioning.
As the Thyroid does its "relationship" with my liver...
then my Liver begins to return to baseline... the fluid stops accumulating... and I can re-engage in a semi-normal!
Some might ask...why didn't you go to the doctor???
I have... thus the complete Thyroid "testing / work-up"..several times.

Chronic Auto-Immune Thyroiditis with benign nodules...
intermittent episodes of Hypo-Thyroidism and even occasional Thyroid Storm if manipulated/ palpated (physically touched)

Tried Synthroid...did not tolerate... migraine headaches, increased "storming" (firing erratically... too high...then too low)and a whole-body sensation of being "squeezed"... these issues persisted for about three weeks after discontinuing the medication.

Final Medical Advice:
"Learn to cope with the episodes and monitor Thyroid/ nodules with regular testing"

So...I have been coping with these intermittent episodes for four years now.
My liver function has only been impacted during these "Thyroid Episodes" for about a year now.

My new proactive plan:
I found a Hepatologist and have an initial appointment next month.
I found a Thyroid Specialist and am in the process of setting up a new patient appointment.
I joined a Long Term Clinical Study: Acute Porphyria... my initial appointment is in about three weeks.

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