Friday, November 9, 2012

HYPERTHYROIDISM... is HYPER =p

So lets take some time to discuss HYPERTHYROIDISM...

but wait thought you said u lost ur thyroid gland... wont u be underactive aka HYPOthyroid?

Good question-- I am on Synthroid (and for u people with thyroid issues ALWAYS TAKE SYNTHROID ... there are no substitutes!!)  A very high dose actually. To help explain what the thyroid does... i will google a nice picture...   ah  there we go...

                                   
That says that the brain tells the thyroid to make thyroid hormone... it travels in the body and ...

  • REGULATES METABOLISM-- needs to be in a delicate balance... too low and ur tired and not enough energy is produced; too high and to make ur body work in overdrive and over produce energy ur body has no use for 
  • As children it is necessary for proper GROWTH of all tissues and ESP THE BRAIN... must have thyroid hormone in a delicate balance for the brain to function and develop normally!!
  • Acts on the cardiovascular system to increase cadiac output (how much blood the heart squeezes per beat), heart rate, and contractility of the heart (how much force the heart squeezes with). Finally it aids in peripheral vasodilation improving blood flow to the internal organs
  • Central nervous system: works in a BALANCE to stabilize mood, anxiety and nervousness
  • Fertility- need to have normal thyroid levels to ovulation
You can see every cell in the human body responds to thyroid levels... pretty damn important for a tiny little thing huh?

BACK TO THE CANCER

When my body is without my synthroid my brain will tell the absent thyroid to produce more hormone (using a chemical called TSH - thyroid STIMULATING hormone... this is bad... dont want my cancer to be STIMULATED... dont want to encourage ANY thyroid growth... so they keep me at a pretty high dose of hormone - much more so than most... basically inducing HYPERthryoidism to keep the cancer from coming back...


Wait too fast what is this Hyper/Hypo thyroidism u speak of?
                       Image:Hypohyper.jpg
Basically that above... and for me...

   neither was/is fun.. HYPO is the WORST cause u get this fog... u cant think... u cant remember words and u talk really slow... takes A LOT of effort to stand and walk... its like being demented but having enough brain left to know ur head and body is messed up!  U are too tired to breathe... u just want to sleep... Being hyper is no picnic either.  My Heart Rate (HR) went up to 100-120 bpm (beats per min)... no bueno... that will make my heart work very hard- making my blood pressure (BP) go up... that angers my kidneys and heart even more sending me into early onset heart disease = no bueno.  U lose weight maybe- but its muscle weight.  U talk real fast... if u thought i was bad before u should see me now LOL


SO about 3 days or so post op i started to feel VERY HYPER... oh so bad...

  • i was shaking, jittery and felt constant waves of adrenalin... that wouldnt shut off
  • my heart rate skyrocketed to round 110s to 130s on avg and i could feel it
  • My hands would shake a lot
  • wont go into detail but the bowel problems... no bueno... 
  • very irritable and cranky (poor husband!)
  • ironically i was very cold still... if it dropped below 78 i would wear long sleeves and sweat pants... for some reason i am always cold now... 
  • I N S O M N I A... for going on 3 weeks now... yup cant sleep.  HR was way way too fast... body not calming down long enough... i was wide awake until round 7 am slept til 10-12pm waking up every 1/2 hr or so as i cant stay asleep nor get comfortable given my messed up numb back/rash/pain and leg and neck issues =\
  • I quit eating.  Didnt really lose weight that i can tell on the scale anyway but also would go with one meal maybe  2 a day and not eat much ... i thought i was hungry but when i had food i just didnt want it.


THEN
post op day 6 my leg looked way more swollen like it had edema (fluid) around my op site.  I had a mild fever that didnt go away with tylenol and whats worse i couldnt walk on my leg anymore... it hurt A LOT...

so yes all u medical buddies i went to the ER around 10pm at night... when i was triaged my HR was 150s my bp was 180/110... still had a fever.  They said u have high blood pressure ? i said NO never... post op i was discharged with BP 120s/80s (my normal).

What happened??

Well i think i was so uncomfortable due to back/arm/numbness/rash/leg issues it over stiumlated my hyper state and kicked it into overdrive. when those chemicals are created- they dont go away fast.  And i was in constant pain.  I tried to take meds but 2 pills every 4 hrs did NOTHING... i was foggy headed, nauseated but back hurt like hell still... SO i was observed overnight they gave me IV pain meds and fluids and antibiotics for what looked like a cellulitis

HOWEVER
turns out the rash doesnt fit any particular reaction.  It doesnt fully represent shingles, or some wierd dermatits or ulcer.  When i saw the nerve surgeon he was pretty sure i had a drug reaction!!  well the only drug i got that could be to blame was Ancef (related to the penicillin class)... SO they are gonna test me for that later but the going theory for the moment is that i had a drug reaction that didnt help the hyper state either IN ADDITION to the issues i had from bad table placement for WAY too long =(

I saw my PCP and  begged him for BETA BLOCKERS... YEA ... 

I was so hyper - in every sense of the word... it was so EXHAUSTING...  think of how u felt when ur scared - i mean really scared or traumatized... then picture it never ending.  =( no bueno

so he gave me a medium dose of pills to BLUNT the effects of the adrenalin type hormones.

This week

  • I can get round 4hrs sleep at a time which is much better
  • My HR is down to the 80s-90s, blood pressure still up though 130s/100s (should be back down to 120s/80s
  • The adrenalin is LESS... i dont feel jittery and shaky and anxious... I even talk less... 
  • I can relax at least once a day which is great... by that i mean i feel calm... 
    • to put in perspective: getting up from a chair to pee is enough for a flood of adrenalin to pump into my body that lasts hours!!! so yea being able to walk around, do normal activities of daily living and NOT feel so AHHHH all the time is so refreshing
  • My rash is red but less angry, no more pustules
  • My back still numb and most of top of arm feels dead- leathery dead
  • My skin in neck and chest and ear is waking up YEA
    • didnt help hyper state either.  Put a battery to ur tongue and hold it there... 24hrs a day... WAVE after WAVE of electrical shocks just like the panels on ur heart zissst zissst ALL THE TIME... doesnt help me sleep or relax or keep my BP and HR down
    • on the up shot YEA if skin is waking up then nerves are healing.  And its annoying to jam the telephone in my right ear cause i cant feel where its at... 
  • I CAN WALK =)
    • I know they said i had some drug reaction but that leg looked awfully angry and after 7 days of clindamycin it cleared right up and i could walk on it without a cane
  • MY VOICE... 
    • well i dont know.  It recovers faster when its tired.  At some times i sound really normal and then i cough... i cough alot... then i wake up and i could be a whisper so i dont know i think its still healing?  will keep an eye on it but overall im going with better
WHATS NEXT?

I do bloodwork again in 2 weeks.  They will check my tumor marker and my TSH level.  They did reduce the dose of synthroid but i dont have much wiggle room as i need to be supressed to keep the cancer from persisting.  Also when the dose changes... takes my body 8 weeks to really feel that difference.  So cant wait for that to happen! I see the PCP again also in a little over a week and im guessing this beta blocker will have to come up a bit higher as i still struggle to sleep and have hyper symptoms.

For first time i do feel like im mending and things are getting better.  GOD WILLING i will be back at work right round thanksgiving and PRAISE GOD be DONE WITH THIS... 

Again they will check me in 6mo -- this time probably ONLY with ultrasound and bloodwork... remember my iodine scan was negative... it said cured.  and i wasnt.  a little less than half the lymph nodes removed were positive for cancer.  means im resistent to the radiation.  It can happen when the dose is that high.  kinda transforms the cells so they can survive it somehow... so at this point the only treatments available to me are surgery, experimental chemotherapies and external radiation -- NONE of which work well.  but he thinks he got it all and i feel satisfied with that.  my thryoglobulin level was pretty low to start so i really have good feelings that this test will come out GREAT... 

then i get checked every 6 mo x 2 or 3 times then it goes out to a year x2 then they extend it to every 2-3 yrs etc... 

and that is my life... and im thankful i have it.  Several other people get cancers that spread and dont hang around 6 months to blog about it... so i am blessed to have all of u and to be mending... and moving on

I heart u all ... its 3am and time for me to try to sleep ;P

take care and good night!

Thursday, November 8, 2012

6 months later....

Sorry for those who havent heard from me in a LONG TIME... over the last few months was adjusting back to work, then making up for lost time, then started the scanning process all over and well here we are...

To back up...

When i left u guys last- i had right vocal chord paralysis post op from my total thyroidectomy (removal of thyroid gland) as well as 22 positive lymph nodes.  I also had a really high dose of Radioactive Iodine in hopes of ablating (destroying) any left over microscopic tissue... in order to resume working i had a vocal chord injection, using similar material they use to fill lips n wrinkles to physically move the vocal cord over.  (its called Radiesse voice if i remember)... that injection lasted about a month, then the coughing , breathyness and difficulty doing my job ensued.  So in Aug i had injection #2.  That one made my voice almost perfect for bout 2.5 weeks. I was in bliss.  Didnt feel broken.  Then i started coughing a lot.  When they did injection #2 the ENT (ear nose throat doc) said the top of the vocal chords were making contact but the bottoms were not =( so he aimed hard to get to the back of the chord to move it into a better position

see pic below
  paralysis

the process looked like this

injectionThe needle is placed just to the side of the paralyzed vocal cord.injectionWith injection of a biologically compatible substance, the vocal cord is pushed to the midline.
Those injections are very uncomfortable i wont lie, but they gave me better quality of life and i was able to do my job with less stress as i could be heard and function without sounding like i had the plague


SO what happened between Aug and now??

First in September I had my first 6 mo post op ultrasound.  They will scan me every 6 months to follow the cancer persistence or recurrence until i have 2 or 3 that are clean... Mine was evil looking- had 2 places that they were concerned about.  Before u say it - the surgeon didnt miss anything- he couldnt see it... Turns out there was a lymph node hiding right inbetween my carotid artery and internal jugular vein (upper middle neck) as well as another one right under my clavicle in between my subclavian artery and vein.  Well these are very trickly places to get to with a needle to biopsy.  After the ultrasound a week or so later i had another radioactive iodine whole body scan.  THANK GOD they did NOT have to take away my medicine... I love synthroid... think everyone would be a little happier on doses of it HEHEHE but i digress

So the whole body scan said i was CURED... YEA ... but wait... hmmm my ultrasound still showed concerning nodes ... and my blood still had an elevated tumor marker.  Thyroglobulin antibody (my body trying to kill the cancer)... My level pre op was like 36 or so came down to 13 post op day 1 then went back up to 23 or so around my radioactive treatment then stabalized around 11... none of that is 0 which is what i needed.  SO they sent me for fine needle biopsy again...

HOWEVER they couldnt do that- the doc tried but those two spots were in such a BAD BAD dangerous place that it wasnt a good idea to try... SO

BACK TO THE OR I WENT... on OCTOBER 17th 2012...

my second operation was a modified radical neck dissection with lymphadenectomy (in other words they are going hunting for ANY lymph nodes in the right side of my neck)... This was for a cure (hopefully)... take out those two bad spots and any others that may grow in future and i ll be DONE...

as i was getting ready for that the oncology surgeon offered me a way to try to improve my voice as i do struggle with it daily... NERVE GRAFTING... =)

Basically they take a motor nerve from my leg ( those are nerves that makes muscles move) and implant it in my neck much like u connect two cables that are freyed... Why u ask would they do this?  Cause this time he was going to sever and remove a good chunk of my recurrent laryngeal nerve... so if i had hopes that it would heal after Oct 17th... NO CHANCE...
                      Basically this pic helps explain it except the nerve they took from me was in my thigh =)
                                               Illustration of a nerve graft from the lower leg


I saw a Plastics Hand Surgeon from UMH (yes plastics and yes hands... why cause they are SOOOOOO GOOOD at attaching and fixing tiny nerves in the hand which makes them a specialist at nerve grafting which is what i need... there isnt really a doctor that ONLY does voice nerve grafting) anyhew

He said i was a great canidate (young, non smoker and 6 mo out post op)... So i signed the consent praying insurance would cover it... a few days later got the notice that it was PAID IN FULL ... =)

March 1st i went into the OR at 745am and i woke up at round 5pm... =(

first thing i saw was my BACK HURT LIKE HELL... it burned so bad my instinct was to raise up but when i tried to move my arm--- it wouldnt really move... could barely lift it... turns out i had been on that table bout 2-3 hrs longer than i should have and it was a long surgery to begin with.  I am a heavy lady and unlike everyone else when my arm and or back falls asleep my body couldnt wake me up to tell me to move off it.

My skin was numb from my right ear down most of the way to my left breast.  My arm was numb from my chest half way down to my elbow.  My back was numb from between my shoulder blades about 4-6 inches down all the way across.  My back burned so bad hurt WAY WAY more than anything else.  Turns out i had this narly rash.

When i woke up the next day started to look more like this ...


Because i couldnt walk, move much or stand and i was SOOO WEAK i stayed 2 days in the hosp.  I was discharged with pain meds and the recovery process started... I had a little over a foot long incision in my right thigh where they went after the motor nerve, surgeon put about 4.5 cm spliced into what was left of my recurrent laryngeal nerve.  Good news is i felt like i had a louder voice almost immed post op.  For those that dont know- it takes MONTHS before i should see results... dont know why i was  and continue to be louder than b4 and my voice recovers faster... BUT I LL TAKE IT =)  and be THANKFUL...

ok this is long enough stay tuned to find out how AWESOME HYPERTHYROIDISM IS... =)

Part 2 To Be Continued...

Much love and many blessings to you all =) and thank you as always for the happy thoughts prayers and to those who have to make up for my absence at work... this has not been an easy road for anyone! and without great amazing people moving in my life i dont know where i d be =)