Symptoms & Bloodwork Results

I've been tired, cold (unusual for me) and have had trouble losing weight. I thought for sure my Tirosint at 100 mcg wasn't enough. I was wrong. TSH is right at 1.33. Free T3 is midrange. So, that's not it.

Maybe it's what my daughter says: "You are getting older."

I also have a lot of arthritis pain...especially in my hands and hips. My Vitamin D came back over 80! So I am cutting my daily supplement by half. My PTH is also elevated, but calcium is low normal. That's a conundrum. I'll supplement with more calcium. I'm not good about swallowing those darn horse pills! I try to get it from diet, but that's challenging too.

Hopefully cutting back on the Vitamin D will help cut back on the joint/bone pain.

I'm also headed in for an MRI of my cervical and thoracic spine due to some numbness. More on that when I get the results. 

I switched to Tirosint - again

So I've been hanging out on Reddit in the r/thryoidcancer subreddit. It's a great environment of newly diagnosed and others dealing with the thyroid cancer journey. Reddit is a bit unique in that it tends to attract a global community who really want answers. Anyways, someone on Reddit wanted to know more about Tirosint and since it comes up often, I figured let me blog about it rather than answer questions as they come up. So, here goes:

I learned about Tirosint years ago at a ThyCa conference - there's one coming up in September - the 16th to the 18th - sign up at www.ThyCa.org/conference - it's FREE. Anyways, the folks who make Tirosint where there exhibiting and I learned that this formulation of levothyroxine (T4) contains only 4 ingredients...the T4 itself, water, glycerin and gelatin. COOL! No dyes, no fillers, no lactose, no nothing! So, way back then, I switched to Tirosint. I think it was in or around 2012. I immediately liked it. I required less...I think I went from 137 mcg to 125 mcg. But my insurance didn't like it and I eventually switched back to Synthroid...then to generic levothyroxine...all driven by the insurance and my wallet!

Other things I liked about Tirosint - well, needing less was a big thing. But the brain fog was less and I had an easier time losing weight (when I tried...trying is key and I'm not good at it LOL).

So, fast forward to more recently. A friend of mine was put on Tirosint and let me know about a mail-order deal through the manufacturer themselves where it's only $50 per month. Whoa! I'd pay that out of pocket to get Tirosint...so I again switched. Relatively recently I was on 137 of generic levothyroxine. I was too hyper so we lowered it to 125...but I was still going hyper so we dropped even lower but with the switch to Tirosint, my endocrinologist suggested 100. Whoa! That's not much!! But I just did my bloodwork and my TSH was 0.9. I prefer 1.5 so it's still a bit "hyper" for me, but it's not technically hyper so it's all good.

So, that's my Tirosint story!

Some updates

 The visit with the ENT at Mayo had this to say in his follow-up notes:

ASSESSMENT / PLAN 

#1 Parotitis

 

It was a pleasure seeing Ms. Jerauld in clinic today. She is a 58-year-old female who had an episode of parotitis which was appropriately treated. There was concern for a parotid mass, but a CT scan performed did not demonstrate any masses or lesions. I did call Dr. N. to confirm because I did see a hypodensity in 1 of the axial slices, but he confirmed that this was artifact and was not seen any of the other slices. I told her that this is all good news. Should she have recurring symptoms, sialoendoscopy could be considered in the future but certainly not at this time. She can follow-up on an as-needed basis.

The results of the spinal X-Ray was as follows:

#2 Osteopenia

Have placed order for spinal x-ray given significant loss of height. If compression fractures are present would recommend treatment with bisphosphonate therapy. If negative, then recommend continuing conservative therapy. Will follow-up with her with those results on the portal. She was encouraged to continue with current calcium and vitamin D regimen as well as routine exercise.

ADDENDUM:

Vitamin D levels are adequate, with 25 Hydroxyvitamin D total 57 ng/mL. Spine x-ray demonstrates anterior wedging of several mid and upper thoracic vertebral bodies and compression of superior endplates of T4 and T5. Contacted patient by phone to discuss recommendation to initiate bisphosphonate therapy. Discussed risk/benefit of Alendronate therapy along with appropriate administration technique and she is agreeable to proceed. Prescription was sent to her local Walgreen's Pharmacy at her request. Placed order to repeat bone density in one year. Patient has requested that copy of this note be sent to her local spine surgeon n Joplin, MO.

#3 Cancer Thyroid Papillary Personal History

No worrisome features for recurrent or metastatic disease on thyroid ultrasound.

ADDENDUM: Patient notified via phone call that her Thyroglobulin level is undetectable. She is now 10 year cancer survivor. Recommend repeating thyroid ultrasound in 5 years unless abnormal physical exam or laboratory results.

The research into Alendronate now is underway and I will likely start that soon.

Most results are in...all good news

Turns out the mass in my parotid is gone. It was just an infection. No follow-up needed, unless the infection returns. 

In the meantime, since it's 2022 and my last thyroid cancer occurrence was in 2012, my next neck ultrasound is in 5 years. Wow! I'm part happy and part terrified. It seems like such a long time when I have had neck ultrasounds yearly, sometimes more than one a year, for 26 years. I only skipped 2021 due to the pandemic. 

I will rely on Tg testing (blood test for my cancer marker) and neck self-exams.

I am only waiting on the spinal x-ray results.

Time to celebrate!!

Quick Mayo Update, day 1

Day 2 is this coming Friday. In the meantime today was ultrasound, blood work, CT scan with contrast, and I met with my Endocrinologist's nurse practioner. 

Results:

Thyroglobulin cancer marker : Undetectable (yay).

TSH 0.5 so reducing dosage from .112 to .100 and switching from levothyroxine to Tirosint (yay).

Parathyroid hormone is elevated (darn it) but calcium is okay...so watchful waiting on that.

Neck ultrasound was clean (yay).

I don't have results from the CT of my parotids yet...that's on Friday.

An x-ray of my spine was ordered for Friday due to loss of height.

Stay tuned for more details...

Long overdue update

Well, just when things are running along smoothly, I hit a bump in the road. This note I just wrote to Mayo Clinic explains it:

Hi Doc and your nurse practitioner (whom I have not met yet, but will on March 22).

My left parotid [left saliva gland right in front of the ear] bubbled up 2 weeks ago. I was, and still am, traveling in New Jersey. I right away self treated with hot compresses, sour candy, massage. I found an in-network ENT nearby - Dr. L. of NJ. He prescribed a week of antibiotics, saw me in the office and ordered an ultrasound (U/S). He just called with the results and assures me everything has been faxed to Mayo.

He said the U/S shows it's not a stone, but instead a "complex lesion" which he described as partly fluid, partly solid. It's 7 mm. There were also reactive lymph nodes that he said did not show signs of pathology. He said the largest of these lymph nodes is 1.5 cm. [I didn't put this in the note to Mayo, but I did ask what he meant by no signs of pathology and that means the fatty hilum is present - this is a very imperfect test but certainly more good news than bad news].

From my vantage point things are much improved...what first felt like an almond, then like a chic pea, now feels like a pea. My face was visibly swollen, and now it's hard to see anything. So, I'm really, really hoping this is all just an infection, but Dr. L suggested a follow up ultrasound in 4 weeks and a biopsy if it's either the same or has grown. I have the CD with me and I will bring it to my appointment on March 22nd.

Dr. L also mentioned maybe needing a CT scan. Will you be able to let the U/S folks know that they need to check my parotids? I figure the rest we can figure out together when I'm there on the 22nd. Thank you kindly, and I look forward to seeing your NP when I get to Rochester!

Be safe, dj 

And so the waiting begins. I hate the waiting. Odds are this is an infection. But I can't seem to shake the fear of salivary gland cancer. A dear friend passed from his battle with it and another friend survived hers and is doing well. What did 150 millicuries of radiation do to my saliva glands back in 1996? Did it cause damage? Is this just an infection and I'm worried about nothing? Sigh.

Keeping me sane is Yoga. Yoga with Adriene. She's amazing and I do aim for daily time on the mat. I've been pleased with every other day as I pack up Dad to move him to Kansas to be near me. Also keeping me sane are the daily tasks of sorting, packing, sorting, packing.

I have a feeling the appointment at Mayo might grow to be lengthier than originally planned. The original plan is/was blood work, ultrasound, meet with the doc's NP later that day. Then go home. The way Mayo operates if they decide they want to do more, I'll stay longer and get it all done. So nothing changes other than pack some extra clothes and bring enough medication for an extended stay.

In the meantime - life goes on!

25 Year Cancerversary

It's hard to imagine that 25 years ago today, at just about this hour, I was in my hospital room at Genesis East in the Quad Cities, recovering from my total thyroidectomy and partial neck dissection. It was (and is) the Feast of St. Joseph. My surgeon's first name was Joseph - I felt that was a good omen.

I wish I could say that as of today I am 25 years cancer free...but that's not been my story. The thyroid cancer recurred later that same year, 1996, and I had surgery again on August 16th. From there I was never really out of the woods with a Thyroglobulin (Tg, cancer marker) that was always creeping upward...ever so slowly. Early on I recall blood work that would say I had undetectable Tg, but when it was stimulated (with a high TSH), it was detectable. So, there it lurked...waiting to wake up.

The cancer did wake up in 2012. Thanks to amazing doctors at Mayo Clinic, I benefited from Ethanol Ablation and since then, I have had N.E.D. (no evidence of disease). So, I guess I'm thyroid cancer "free" for 8 and a half years, while on this 25 year journey. Bottom line - I'M SILL HERE to fight!

I had my Mayo Clinic check up earlier this week. We did it virtually by using a blood draw kit that was mailed to me. I had blood drawn locally (in Joplin, MO because I like the medical facilities there) and I had a bone density test in Joplin as well. Here are the details:

Tg undetectable (YAY!) and Thyroglobulin Antibodies are less than 1.8 (YAY).

TSH = 0.4 - too low for my taste AND I managed to skip two pills the week prior (which almost never happens...but it did)...so my TSH might actually be even lower. I will re-test it in a few weeks (around 6-8 weeks from now) and we'll decide what to do with my levothyroxine. I would like to take less! Taking too much leads to bone loss and an increased chance of A-Fib.

A1C = 6.1 - pre-diabetic. I've been here before...more exercise, fewer carbs, take off some more weight and that will be OK. The doc said there was no need for medication.

Bone Density test - I've reversed the bone loss from the hyperparathyroidism (yet another whole story, read below if interested) and things look good!

Plan: Retest TSH in a few weeks and he'll retest Creatinine too since I was a bit dehydrated when I did the blood test and he wants to make sure this ever-so-slight elevation is not a big deal. Do a neck ultrasound in 1 year at Mayo Clinic. Do a bone density test in three years.

So here I am 25 years into this journey, and to celebrate, we are eating St. Joseph's pastry that I had shipped in from NYC. We'll also watch a movie tonight. It's a far cry from 2005 when we had the "life party" to celebrate 15 years...but COVID changes everything.

I wish my Mother were still alive to see me reach this milestone. She passed away on Easter Sunday, 2020 - April the 12th. I think this is a synchronicity - but I'll have my second Pfizer COVID vaccine soon and the day I achieve 95% immunity per the CDC is April 12th, 2021. Mom's smiling from Heaven.

Well dear friends and family - stay well, continue to mask up, continue to fight the good fight, stay healthy and reach out when you can! 

For more great resources on Thyroid Cancer, go to www.thyca.org and be sure to check out the 9th Edition of the Low Iodine Cookbook where I served as lead editor with two other wonderful volunteers. For questions about the diet and using it to prepare for thyroid scans or treatments with radioactive iodine, write to recipes@thyca.org.

Oct of 2018 Mayo visit

Mayo update: Doc said "This is your best visit since starting your care here in 2012." Reversed the fatty liver syndrome and dropped cholesterol and lipids significantly. Both due to 12 lb. weight loss on their scale. Cancer marker UNDETECTABLE and zero reactive lymph nodes in my neck (I think that's a first in 22 years). Fasting sugar still high at 112 but A1C is 5.9, so no meds for that.  Best news is the complete reversal of bone loss!! I gained back all bone loss in my spine thanks to Mayo removing the diseased parathyroid in 2016 and I increased bone mass in my hips due to walking more. I get to take half a synthroid on Sundays since I am far too overdosed (TSH 0.05...yikes...no wonder I am always warm). I get a whole year off for cancer scans and 2 years off for bone scans. Yay! He said to lose 8-10 more pounds before next October. I do best when he sets goals for me. :-D

01Dec16 Update

Lots has happened since my last post.  My spondylolisthesis got much worse and I lost the ability to walk independently on August 20th.  But, I've had back surgery and I'm doing great!  I chronicled that in a separate blog which I'll link here: My Spondy Blog

Time for an update

First things first.  Since removing the diseased parathyroid, the deep down in the bone aches are gone.  YAY!  I had blood drawn last week and have some results - but I do not have my PTH (parathyroid hormone) because - guess what - THEY PUT THE BLOOD IN THE WRONG COLORED VIAL.  So, I have to have it redrawn.  This is super annoying because my calcium came back below normal - not terribly below - but below - and that number is more meaningful to interpret along with PTH.  I'll pop in and have my PTH redrawn this week sometime while running to and from physical therapy (see update below) and the results will be helpful - but not has helpful as being from the same sample that showed low calcium.  UGH.  So, I'm being more disciplined about taking supplemental Ca on top of dietary Ca.  My scars have healed well from surgery so all is good on that front and I'll know more when PTH is available.
My TSH creeped up to 0.7 - figures since I stopped Tirosint and went back to Synthroid.  Tirosint is just plain better.  But Synthroid is good too.  I'm trying to decide if I should just stay on my current dosage or ask my endo who might up my dose and I prefer a TSH of 1.5...and I'm at 0.7 - already low - and more Synthroid will likely push it to the 0.4, 0.5 range.  I might just stall ;-)
I had my chiropractor X-Ray my back and my Spondylolisthesis (L4/L5 instability due to a pars defect and weakening bones, causing a half inch slip when I move, resulting in lots of pain) is ever so slightly worse.  I mentioned that to my PCP (primary care provider) and she ordered Physical Therapy (PT).  YAY!
Wait, why am I saying YAY to bootcamp??  Well, I guess because I know it's good for me.  My PTist said she could order water therapy - i.e. in a pool!! - which would be great.  That can get me into the local High School's pool in the winter months when my pool is closed.  So I'm looking forward to that game plan for next September/October when we close up our pool.
Basically the PTist says that I'm pitched forward for multiple reasons:  1.  My hip flexors are too tight and shortening - so we are working on stretching those.  2.  My back is unstable - we knew that - so we are working on core strength.  3.  My hamstrings and piriformis muscles are also tight - making it harder to stretch my hip flexors.  So the routine so far is 10 minutes warming up on a stationary bike, followed by about 50 minutes of stretching.  One hour.  Here's the kicker - I have to do this THREE TIMES A DAY.  So that means finding three hours each day to help myself stand up straighter and help avoid a back surgery.  So some changes are in order around here...like any TV time (I don't watch much but I do like to watch the news and a few shows) is now stretching time...and meals need to be easier to make.
Speaking of meals, my A1C came in at 6.3 - NOT COOL.  That's definitively pre-diabetes.  I've been here before.  Watch the carbs, take off 10 pounds (very hard to do, especially now with my daughter owning a restaurant 1.7 miles from my house), and more fruits and veggies (which my tummy doesn't like at all).
So, no more time to type - need to go stretch!!  In the meantime, there are many more folks out there with medical situations far worse than mine - so I offer up my chronic pain for all of them.

You can't make this STUFF up!!!!!

So...I'm still having symptoms of hypocalcemia - low calcium.  I wake with numb lips and tingles in my fingers.  I know it's minor hypocalcemia from the last blood test that came back below normal but not terrible.
First off, I was not taking enough calcium.  Mayo prescribes 5700 mg daily (or two 950 mg tablets, three times/day).  In the grogginess of post-surgery I miscalculated and was getting about half of that. It was my mistake.  So, I corrected that and was on the right dosage for a few days and thought I should re-check and Mayo suggested testing PTH (parathyroid hormone) as well.  So, one week ago today I went to the clinic and had blood drawn to test TSH, PTH and Ca.  Then the waiting started because this is not Mayo after all...
Monday, no results...Tuesday, no results but my TSH was 0.56 (that's good)...today they call me to tell me my Vitamin D3 results - 39.  Except they called me last week and told me that so I said "I don't need that result, I need Ca and PTH."  The reply "I have your Ca right here but can't give it to you over the phone and there's not PTH.  Let me check and call you back."  She calls back "Please don't shoot the messenger [never a good way to start a call] but your blood was compromised and they never tested your PTH."  I asked about the Ca - "I'm looking right at it but I can't give it to you over the phone.  But since you need to go to the hospital anyway to get PTH blood work done, you can sign a release there and they'll give you your Ca."
So, off to the hospital I went.  I had my blood drawn for PTH.  Everyone was super nice and knowledgeable.  I went to "medical records" and filled out paperwork to release my Ca results.  They hand me print outs of TSH and Vitamin D3.  "I am interested in knowing my Ca.  It was drawn on January 29th at the clinic."  They replied that they had no Ca in the system.  They walked me to the lab to see if the lab had the results and the lab showed me the order that was sent in:  PTH, Vitamin D3 (which was not to be tested) and TSH...no Calcium!!  Then they explained that they could not test my PTH because the blood had aged - after three days it's no good - the clinic left it there Friday, Saturday, Sunday, Monday and then the hospital lab got it and could not test it.
So, they suggested I have my blood drawn (second poke of the day - luckily I don't mind) right then and there and they'd hold it until the order for Ca got faxed over - saving me a return trip.  I thanked them, left my blood with the vampire lady and went off to the clinic.
I explained at the clinic that the hospital never got the order for the Calcium..."but we are looking at your Calcium results right here" was the reply.  I asked them to check the date.  "Oh, I didn't look at the date.  You are right, there's nothing from January 29th.  I'll fax the order right now."  I thanked them and left.
Now, my phone buzzes - I have an app on the phone that routes home voice mail to my cell.  I check it - it's a fax.  I open the fax - there's the order for the lab to test PTH and Ca - and they FAXED IT TO MY HOME PHONE!!!!!  Not to the hospital lab.  I downloaded it to my cell, called the hospital, asked for the nice folks in the lab...they shared their e-mail with me, I sent the order over and they acknowledged getting it.  By Monday, God-willing, I'll have PTH and Ca results.
So the clinic errors:  Drew blood left it sit 4 days.  Didn't order the right tests.  Looked at test results with the wrong date.  Faxed order to my home phone and not to the lab.  Geesh.
Now for the pharmacist rant...
950 mg of Ca times six tablets a day = 5700 mg.  The bottle they dispensed to me (Walgreens I might add) were tablets that contained 630 mg of Ca per dosage - two tablets in a dose.  So...my rudimentary math skills say that's 315 per tablet or needing to take 18 pills per day.  But alas no, the pharmacist tells the pharmacy tech to tell me (he would not talk to me, not even look at me) that I need to take 9 a day.  "You are off by half" was my reply.  Her reply back to me, holding up the prescription from Mayo "That's how your prescription was written."  OK, so by now I'm starting to get real Jersey if you know what I mean...forget Iowa nice or Southern charm..."Oh, I know exactly how it's written.  There's 315 milligrams of Calcium in each pill.  I need 5700 milligrams per day.  That's 18 pills.  You are off by half."  I said all this with my calculator app open on my phone, doing the math as I spoke.  She went back to the pharmacist who would not look at me, went to the shelf, grabbed another bottle and dispensed the calcium citrate.
I feel like I'm in some medical Twilight Zone where nothing happens properly.  I can't really get too mad at the pharmacist since I made the same error myself when looking at the Caltrate Petites and looked at dosage and not per pill.  However, I did that the day I got released from Mayo while still quite groggy - AND I'M NOT A PHARMACIST!!!  My math had me taking 15 petites a day and I should have been taking 30...it didn't seem possible.  But no excuses, I screwed up.  So did the pharmacist.  So did the clinic.
I guess I'm just happy the surgeon and the anesthesiologist did so great!!!
Enough ranting...count my blessings - offering it up for a brother named Steve in NJ who is dealing with some pain.

Calcium is too low!

The tell-tale signs of low calcium - tingles in the fingers and around the mouth.  I've had that for several days so I went to the local doctor for a blood draw.  My calcium had dipped to 8.4 (normal at the local lab here is 8.8 - 10.5).  So I called Mayo Clinic and they said it's low, not dangerously low, but must be addressed.  They asked if I was taking calcium.  Yes!  Lots of it!  But the source is calcium carbonate and they prefer I switch to calcium citrate which absorbs better.  The issue with the calcium citrate is I can't swallow the pills...even the "petites."  My neck is swollen from surgery and I got one of the pills stuck in my throat and had to hack it back up (sorry for the visual).  Mayo said I could grind them up.  So, I need to take just shy of 6000 milligrams of calcium a day - split up into three doses.  That translates into 15 Citrical Petites a day.  I ground up 5 of them and mixed it with applesauce and that was my appetizer before dinner.  I'll keep pushing the calcium.  If no change in symptoms, I'm to have the local doctor draw calcium and parathyroid hormone on Monday.  In the meantime, I'm feeling pretty well (except for the tingles).

Road map

The surgeon uses the ultrasound and sestamibi scan to make the surgery minimally invasive. Here's my road map images:

Details...

Wow! Mayo Clinic is a well run facility!

We reported for surgery at 7:30 a.m. Wednesday. Once in the pre-op room they had me put on a Bair Paw gown. We determined where 1960 hairdryer technology went! It gets hooked up to a vent system in the Bair Paw gown so you can keep cool or stay warm. It puffs up and I resembled Bebendum...the Michelin Man. I turned it off and opted for room temperature.

Next two IVs were started...flawlessly executed. We waited. The people in the room next to us were debating on Democrats for presidential nominee. We had our own debate on Republicans. Finally I was taken to another pre-operative area where I was on my own. Everyone I encountered was fantastic. I did my usual pass time of praying for the other patients around me...figuring my woes were minor compared to theirs.

My surgeon popped in and we chatted. The anesthesiologist came in and we reviewed his game plan. He had me swallow pain meds right then...never took them pre-op before.

Then it was off to the ER. There was an entourage of people. I met everyone. Next thing I knew I was drifting off to sleep.

I don't recall my time in the recovery room, nor my trip to my hospital room, nor my first nurse...whom Bob said was excellent. The surgery lasted about an hour. The diseased parathyroid was removed and a sliver of it auto-transplanted into my chest...an insurance policy if my healthy remaining parathyroids don't kick in. I had zero nausea...a first...the other 8 surgeries I was pretty sick. 

The second shift nurse was an amazing guy. I got to snack, then eat a light dinner, and the drug cocktails kept showing up...lots of Tylenol, Tramadol, Calcium, Vitamin D and some Oxycodne.  Bob left around 8pm. I rested and was up from 11-5...watched Wall-E on the Mayo movies on demand channel.

I checked my blood work results:

You can see that during surgery my PTH dropped from 78.8 to 19.6.  It fell further Thursday morning to 8.4. Cure is determined by normal calcium at 6 months...but it's normal now and I have a detectable PTH! The doctor was thrilled and she released me to go home Thursday.

We stopped for lunch on the way to dear Deere friends in Cedar Falls, Iowa where we spent the night...after a nutritious and delicious bowl of chicken soup!

We finished the drive home Friday... I slept a couple of hours in the vehicle, listened to David Bowie music, listened to post-debate coverage on the Sirius news channels, made a few phone calls, checked a few emails and chatted with Bob.

How do I feel? Pretty good, considering! My voice tires easily. My neck has some swelling and pain. My ears are ringing from the supplemental Calcium. I seem to have less muscle aches and little to no back pain...but that could be from the pain meds.

The window to rebuild my bone mass is the coming year...up to six years. I plan to reverse the osteopenia and fend off the osteoporosis. My pre-op visit also showed borderline pre-diabetes...so back to the Mayo Clinic Diet! I also need to supplement Calcium for a month then switch to dietary Calcium as I see fit...so long as I get 1500/day.

I saw the photo of my adenoma (the diseased parathyroid) while I was still at Mayo. It was 1 cm across. I'll post the photo when I see it appear in my patient portal.

Now a few days of rest and recovery. Life is good!! Thanks for the prayers!

Doing well!

Surgery was a success! I feel well and I'll post details later this week/weekend.

The night before...

Today was a busy day...the scariest part was the vocal cord exam. I started by doing blood work in the "sub-way" level of Hilton, where the tech told me that there's a tube that carries blood into "central processing" from both hospitals.  BOTH hospitals - remember that the Methodist Hospital is connected to the Mayo Clinic by the sub-way system (no trains for you Easterners - just an underground level you walk through to protect you from the cold).  But, St. Mary's Hospital is across town over a mile away!!  You could hear the tubes arriving - sounded a bit like the bowling alley when the system resets the pins.  My blood (and they took enough for several hungry Vampires) traveled via conveyor belt to central processing - the whole clinic is a smooth operating model (not operating as in operating room, but as in Operations Management 101).
Next was the pre-operative clearance where an EKG strip of the heart is needed.  Flat T-Waves - I knew that and my heart has always had flat T-Waves.  The doctors were not at all concerned since we chased that anomaly down a rat-hole years ago.
By this time I was starving, so I bought a fruit cup which I did not eat and went to the Vocal Cord exam on the 12th floor of Gonda.  I asked there if I could eat it and they advised not to, since I would be "scoped."  I was nervous about this scope - up the nose and down the throat - to look at my vocal cords.  Why look?  Because I'm a "re-operative" case - I've had prior neck surgery which can damage the nerves to the vocal cords.  The surgeon wants a baseline on how much damage I have - if any.  I told the doctor (she was lovely) that I was likely unnecessarily nervous - she said the entire procedure takes under one minute and that calmed me right down!  Plus they numb your nose and throat - the worst part is the stuff tastes awful!  Very bitter.  So they squirted the stuff in and I also said "by the way, I have a tendency to get nose bleeds."  Remember this magical statement should you ever need this done because she turned to her nurse and said "go get the pediatric scope."  YAY - the kiddo scope!!  Much thinner than the adult version.  She showed it to me and said "see it's like a strand of spaghetti."  Spaghetti MY ASS!  I'm Italian - there is no Spaghetti on the planet that is that thick!!  Bucatini maybe - but that was no Spaghetti.  She carefully inserted it up the nose - that part I could feel, but it was not painful in any way - just odd.  I could not feel it at all in the throat.  She had me make a high pitched "EEEEEE" sound and then "breath in slowly through your nose as if you are smelling flowers."  She said everything was working normally and looked good.  I'd say it took 45 seconds, if that!!  She recommended a few brand name items for nasal dryness:  Ponaris - Nasal moisturizer, natural decongestant and XLEAR - nasal cleanser that is moisturizing.  She prefers both to Saline and said the Ponaris has a pleasant Vicks-like smell.  I bought both at the Mayo Store after lunch.
I ate my fruit cup at 10 a.m. as I basked in the sun by the window - very warm, given it was about 2 degrees F outside (that's -17 degrees C for the Celsius crowd).  Off to the Endocrinologists office.  He reviewed everything and answered all my questions about the diseased parathyroid and talked glowingly about the surgeon.
After a walk through the sub-way and the sky-way system in search of lunch, it was time to meet the surgeon - she entered with her entourage.  My Endo arrived to introduce her, along with her resident, her visiting surgeon from Massachusetts and her nurse.  The room was crowded!!
Here's the game plan:

• Call the "hot-line" after 8:15 tonight (but before Midnight) to find out when surgery is tomorrow - yup - I have no idea when it will be until I call the "automated line to receive instructions." (Update: I called and have to report at 7:30 a.m.)
• Anesthesia will be general (yay!!)
• Surgical approach will be minimally invasive
• Location of incisions (two) will be just above my thyroidectomy scar and to the left, and on my upper chest (more on that later)
• No other glands will be observed (we have 4 parathyroids, she will enter, remove the diseased one and sew me up - no hunting around due to significant scar tissue in my neck - my case is known as a "reoperative" case)
• She'll provide a photo of the adenoma (YAY for the U.K. crowd)
• She uses a vocal cord nerve monitor during surgery (cool!)
• She will remove any reactive lymph nodes she observes due to my history with thyroid cancer

She will take a piece of the diseased parathyroid and auto-transplant it into my chest, near the surface of my body - the reason is fascinating:
There are two worst case scenarios - the first is that she can't find the adenoma at all and sews me back up and sends me home.  This is unlikely since we have it on a sestamibi scan and an ultrasound - so we have a "road map."
The second is that she removes my diseased parathyroid and we discover that it was the only working parathyroid I had...so, as an insurance policy she puts a small portion of it into my chest which will start to work in 4 weeks.  The other parathyroids should start working again sooner than that...hopefully right away...but just in case I'll have the one in my chest as insurance.  If that one, since it's diseased, continues to cause issues in the future, it can be removed in a clinic visit, right in the office.  Brilliant!
All in all I was super impressed with the surgeon and her game plan.  She answered my laundry list of questions before I even had a chance to ask them!!  She does thousands of these operations and is an expert in reoperative cases.
So the schedule:

• Wednesday - Surgery - time TBD later (7:30 a.m. check in)
• Wednesday night - stay in Methodist Hospital
• Thursday morning - monitor blood calcium and PTH hormone (which will also be monitored intra-operatively or ioPTH) - if both look good, I will be discharged to go home.  If I have any symptoms of low calcium, I am to stay in the area one more night and go home Friday.

I'll need to supplement with Vitamin D and Calcium to rebuild bone mass - the goal of this surgery is to reverse the incipient osteoporosis (as well as get rid of the bone pain and the ringing in my hears, etc.)
I'm ready!!

Rochester...it's cold here!!!!!!

Tomorrow:

Blood work at 7:30

EKG at 8:40

Vocal cord exam (dreading this) at 9:30

See endocrinologist at 10:30

Meet surgeon at 2:30...

Paratrooper

All of us who deal with parathyroid issues are paratroopers in the war on parathyroid related diseases. In preparation for surgery at Mayo Clinic next week, I've had to give up my Aleve...I take it twice daily and occasionally another one mid-day if the pain is really bad. Oh how I miss it!! It's hard to type - hand pain - like my hands are 80 years old. Other bone pain that's awful is leg, hip, rib cage, shoulders and upper arms. What's left? I guess I can honestly say that my right big toe does not hurt. :-)
THANKFULLY I have work to keep me busy. I can honestly say that when I'm working, I don't feel any pain. I'm not sure how that works - but the distraction of thinking about what I'm focused on (people on the team, spreadsheets, PowerPoints, the meetings I'm in, etc.) seems to block the pain rather well. It's an interesting phenomenon and one that I should learn more about. Nothing else really blocks the pain other than doing some small crafts. I did lots of painted snowmen and Santas for Christmas - made them out of clothespins. As I sat and painted, I really found that the focusing on the details of the artwork made me not feel the pain. The pain is still there - it's just muted.
The downside is the rest of the time...ugh. I'm thinking that many people who deal with chronic pain such as fibromyalgia, should get checked for hyperparathyroidism and elevated calcium levels. I also think anyone with chronic ear ringing (tinnitus) should get checked for elevated calcium levels. The more I learn about this illness the more I start connecting the dots to what lots of people are going through.
Changing subjects, my Endocrinologist called me personally today from Mayo Clinic to tell me that my insurance will no longer pay for my Tirosint. Boo insurance company! Tirosint competes with Synthroid and contains just four ingredients: T4, glycerin, gelatin and water.  Synthroid contains T4, acacia (a gum that emulsifies), confectioner's sugar (??), FD&C Color Number (varies with pill), lactose (milk sugar), magnesium stearate, povidone (synthetic polymer that's used for dispersing and suspending drugs), and talc (as in powder). I like Tirosint - it helped me lower my dosage and I am able to see the scale budge when I diet - never see that with Synthroid. So...I'm switching back to Synthroid and my Endocrinologist will go to bat for me if necessary - but I'm going to try with Synthroid again...it served me well for many years so I really can't complain too much.
I'll update as the date gets closer - likely after I've seen the Endo and surgeon the day before surgery...

Mayo Clinic Countdown

I've never liked having surgery. However, this time around I am really looking forward to my parathyroidectomy.  You can read more about HyperPARAthyroidism at http://hyperparathyroidukactionforchange.blogspot.com/.  I have 20 of the symptoms listed on the right hand side, with 7 of them being life altering.  I hope to reverse this disease progression with surgery - thus the anticipation!

I don't feel that I'm in the best of shape for surgery.  I'd like to be 30 pounds lighter and in better shape.  Exercise has been a challenge when it's painful to just walk.  But the weight part of it can be addressed.  I've been making my regular donation to Weight Watchers for years and I call it my "weight maintenance plan."  The scale does not budge on WW and it was time to switch things up.  So, for the first time in years I actually stopped making my monthly payment to WW, removed the app from my phone and I've lost 6 pounds!  I switched to the Mayo Clinic Diet.  I figured they have not failed me yet - so why not give their system a try?  I'm not wasting away - trust me - but at least the scale is going in the right direction...and in the weeks between Thanksgiving and Christmas - that's an accomplishment if I do say so myself ;-)

The HyperPARAthyroid UK Action for Change support group has been just that - SUPPORTIVE. I'm lucky to have found them and it's been very reinforcing and very inspiring.  The reinforcement is that so much of what I experience (especially the bone pain) is real and very much a symptom of this disease.  It's nice just to not feel alone in the process.  The inspiring part is reading the stories of others who had the surgery and their wonderful outcomes.  I can only hope and pray that I do as well.

Merry Christmas to all!!

Disease progression - headed to Mayo Clinic

Well, the symptoms of the hyperparathyroidism are worsening. Spending two days a couple of weekends ago not able to work or move without being in extreme agony really made me question Mayo's idea to "watch and wait." When I sent the list of worsening symptoms to the doctor (listed below), I had a reply within 6 hours with surgery scheduled for January. FINALLY! God willing it will be a quick surgery (should last about 30 minutes) with a quick recovery (should be about two weeks).
Symptoms:
· Fatigue
· Generalized muscle aches that sometimes are quite bad – I call those time periods “flares” for lack of a better term
· Bone pain – especially in the hips, rib cage, arms, shoulders
· Right side flank pain (kidney pain)
· Sudden development of micro-cavities in my teeth (I never get cavities!!)
· General weakness
· Slightly worsening mood – mostly because I’m in so much pain and can’t do the things I would like to do - most of the time I remain upbeat and positive...but it's frustrating
· Constipation (I know, too much information - but it's a reality for us with Hyperpara)
· Osteopenia (pre-curser to Osteoporosis - significant bone loss)
· Tinnitus - I just learned that elevated blood calcium causes ear ringing - and mine is severe and sometimes impacts my ability to hear and sleep (just ask Bob).


If the surgery is successful, it literally reverses the bone loss! I'm on a Facebook support group for Hyperpara out of the U.K. and so many have said they wake up from surgery with no bone pain. WOW. I've been living with thyroid cancer for nearly 20 years and the pain of hyperparathyroidism is 100 times worse than anything I have had from thyroid cancer.


For those of you wondering, the parathyroids and the thyroid are not at all the same thing - they just hang out in the same neighborhood - the neck. In my case, when my thyroid was removed, one parathyroid was removed also - the surgeon found it and reinstalled it into the muscle wall of my neck. So technically I still have all four parathyroids. One of them has grown an adenoma or a tumor on it which is pumping out excessive parathyroid hormone. My theory is that this is due to significant neck radiation so I do blame the thyroid cancer for this part of my life's journey.  Parathyroid hormone controls blood calcium levels - mine are elevated thanks to the little adenoma. Since a "bad signal" is being sent out into my body that I need more blood calcium, it's leeching calcium out of my bones and teeth to satisfy this need. Dietary calcium adds to the bone pain.

As with every medical adventure, this allows me to give back!  I'm getting more involved with the hyperpara group out of the U.K. (they are far ahead of us with this disease in the U.K. vs. the U.S.A.) and I hope to bring more awareness to it around the world!

For a great (one hour) seminar on hyperpara - click here: http://endocrinesurgery.ucla.edu/webcast.html 

There's much to be THANKFUL for - Happy Thanksgiving everyone - gobble gobble.

It doesn't get much better than this...

What a whirlwind two days up in Rochester, MN.  I arrived the night prior due to terrible weather predicted for the drive up on Monday - so glad I made that decision!
Got the blood work and neck ultrasound done right away...results trickled into my Mayo APP on my phone and everything looked good!
Tg (tumor marker) undetectable
TSH at 0.5 - just fine for me at the low end of normal
Free T3 at 1.6 - the top end of the scale is 1.7 so high normal
Cholesterol 180 (I celebrated with a cheeseburger)
Kidney function fine with creatinine at 1.0
Phosphorus good at 3.2
Vitamin D not as high as I'd like, but still good at 44
Hemoglobin A1c at 6.0 so just fine...although I'll work to get it back down to 5.8ish
Parathyroid Hormone elevated but stable with prior tests at 102
Calcium elevated but stable with prior tests at 10.3

So CANCER FREE and the doc wants to continue to do a neck ultrasound and tumor marker test once per year for 5 years from my last occurrence - so that would take me to 2017 or two more years. If things look OK, we go to every TWO YEARS - WOOHOO!!!!!

The neck ultrasound clearly found the diseased parathyroid.  But with stable parathyroid hormone and stable Calcium, there are only two things that would warrant surgery to remove it:
1. My age - I'm young enough that removal would mean not dealing with this for the rest of my life
2. My bone health - if bone loss is very significant, we would want to reverse it via surgery to remove the diseased parathyroid

The reasons that do not warrant surgery:
1. My neck - full of scar tissue from two prior surgeries and one ethanol ablation
2. My vocal cords - if damaged during surgery (higher risk due to number one) I could end up in pretty bad shape...where the vocal cords flop down and cover the wind pipe so they open a hole in your neck permanently (NO THANK YOU)
3. My bone loss is not bad enough yet and if it worsens, I could use medication to help that rather than surgery
4. My other parathyroids might not kick in and work, leaving me with hypoparathyroidism (opposite of what I have) and that is AWFUL.  Anyone with hypoparathyroidism would likely gladly switch to hyper...  One of my parathryoids on the left is diseased.  The other on the left was removed and inserted into the muscle wall of my neck in 1996 during my thyroidectomy.  The two on the right might be dormant due to the one on the left being diseased and overactive.

So, all in all the doctor cancelled the consult with the surgeon (who had added a vocal cord exam, which was also cancelled).  I was just fine with this!!  Instead he sent me for a bone density scan which showed osteopenia with a 5% risk of fracture in the next 10 years and a 0.7% chance of a hip fracture in the next 10 years...so not enough to warrant medication at this time (HOORAY).  He wants to repeat the bone density scan in two years.

His resident who saw me part of the time today said "keep doing what you are doing."

I have nothing to complain about - I am blessed with these results and with good doctors who are not anxious to cut people open.  I've found a supportive group on Facebook out of the UK who all face Hyperparathyroidism and I'm getting some good tips and ideas there on how to deal with the symptoms since I'll be living with them for a good long while, I hope!  I'd like to avoid surgery...since I've had 8 major ones already.  I do have to pay attention to Calcium levels since as it creeps upward (if it does - hope it does not) then surgery must happen due to symptoms such as kidney stones and other un-pleasantries.

God is good!

So Many Changes!!

I can't believe I have not updated my blog since July of last year!  So much has happened since then...for starters we moved from Iowa to Kansas (work related).  We lost our dear little Shiba Inu dog after 16.5 years of life.  We've had to start over with everything from grocery stores to doctors. But, I'm not giving up Mayo Clinic.  I head there 22-23 June for a long overdue check up...it will be worth the 10 hour drive.

The house we purchased in Kansas has a pool - that has been good for my back.  It needs to stop raining and the cicadas need to die so I can use it more.

The biggest change has been finding a new pain management routine since I can no longer use the pain clinic in Iowa.  I found a new pain clinic in a nearby major metro area with a satellite facility closer to home.  That meant starting over.  The new doc did not want to do the same injections as the prior doc so I got to be a guinea pig for a while and also had to manage a lot of pain since it took three tries to figure things out.  The good news is that he found injecting the left facet joints at L4/L5 provides more relief than injecting more on the mid-line of the spine.  The bad news it took a long time to figure things out.  He also works with a compound pharmacy that makes what I'm calling "magic cream."  It is a topical pain killer and I prefer that to popping a pill.  It's helped improve my sleep.
I'm listing the formula here in case it helps someone:

• Ketamine 15% - anesthetic
• Diclofenac 3% - NSAID like Ibuprofen
• Cyclobenzaprine 2% - muscle relaxant
• Baclofen 2% - muscle relaxant more for spasms
• Gabapentin 6% - nerve pain (I tried this orally and it's awful for me, but topically it's fine for me)
• Tetracaine 2% - topical local anesthetic, often used in the eyes.  Also known as amethocaine.
• Lipoderm base

Dosage is 2 pumps / 3-4 times per day.  I use about 1.5 pumps at night when I go to bed and maybe another half pump in the middle of the night if the pain wakes me up.  I don't use it daily, only when needed.

In general the symptoms of hyperparathyroidism are progressively worsening.  So far it's a slow progression, but this coming appointment at Mayo I need to meet with an Endocrine Surgeon per my Endocrinologist.  We need to put together a game plan if my Calcium rises and/or symptoms worsen. So with the Mayo visit coming closer, my stress level is rising.  I do an amazingly good job of keeping the thyroid cancer and hyperparathyroidism in the back of my brain but as these appointments approach - I start to worry. We'll do the usual blood work and this time a neck ultrasound.  I expect this visit to be "routine" with thyroid cancer and perhaps a bit more time spent on the benign tumor on one of my parathyroids that is causing the hyperparathyroidism.  Read my prior post to see what that's all about.

Shortly after my visit to Mayo, I'll update the blog with news...hopefully good news!

Moans, groans, stones, thrones and fatigue overtones. But my cancer marker is UNDETECTABLE!

So today at Mayo was awesome from a thyroid cancer perspective.  My Tg tumor marker has settled back down to undetectable.  Hooray.
However my hyperparathyroidism is showing symptoms and my Calcium is creeping upward, but ever so slightly.  Suffice it to say - it's complicated.
Surgery is warranted if you meet the following criteria:
Under 50. I'm almost 51.
Calcium over 11. Mine is 10.3.
Osteoporosis.  I'm 0.1 click away from that diagnosis.
A known diseased parathyroid.  One on the left side of my neck has a neoplasm growing on it.
Symptomatic...yup and worsening...especially the muscle pain,  fatigue, tummy issues, weakening bones.

So remove it and you'll be cured...but...I have a complicated neck from prior surgeries.  My endocrinologist wants to meet together next visit with a surgeon.  That will be in six months or sooner if calcium rises further or symptoms worsen.  For now it's watchful waiting.

I Cancelled my Back Surgery

I had a fusion scheduled for May 19th.  I cancelled it.  The physical therapy and swimming have reduced the pain in the back to a much lower level.  It still hurts, but I can handle it.  Now I have a new pain in what I think is my left sacroiliac joint.  It could be tailbone pain.  It's hard to tell, but I'm 80% sure it's the sacroiliac.  I would bet I have arthritis there too.  So, I'll see the local pain doctor this coming week and see what he suggests...maybe a cortical-steroid shot would help. We'll see.

A Body in Motion Stays in Motion...

Having learned that I'm dealing with Arthritis has somewhat changed my approach to pain relief. I'm now taking Aleve twice daily. I rarely use the Vicodin any more...not that I used it much before. The Rx says I can take it three to four times a day.  I was taking it maybe two to three times a week.  Now it just sits there in the pill drawer, along with the gabapentin (see prior post). I do my physical therapy exercises at least 6 times a week, sometimes more. I've been good about getting to the pool a few times per week. The more I move, the better I feel. The more I sit, the worse it is. So that presents a dilemma. I have two jobs - one serious one and one for fun (teaching). Both require sedentary time. So I'm working on adding movement to those jobs - and it's not easy due to being so computer dependent.
I'm also not using the back brace much at all. I'll use it for travel but otherwise my core strength is adequate to do what the brace was doing, and more.
Overall I'd say the pain has improved by at least 50%.  :-)  That trip to Mayo was so worth it!

Go Ask Alice...

Jefferson Airplane's song - White Rabbit describes being high on drugs.  Let's just say that my one dosage of 300 mg of gabapentin was a White Rabbit experience.  :-) and :-(
I'm not taking it anymore.  I'd rather feel nerve pain than feel stoned.
The titration schedule was to work my way up to 900 mg three times per day, perhaps higher. Imagine if one 300 mg dosage had me laughing, singing, walking wobbly and slightly slurred speech - what would 900 mg three times a day be like?!?
I slept it off and called Mayo later that morning (I had taken it the night before) and they said to stop and even if they said to continue, I would have stopped.
Now that I know I'm dealing with some arthritis, I'm thinking about anti-inflammatory medication. We'll see.  Movement is also key and I'll be in the pool later today for sure!

Mayo Visit Today - What I Learned...

Got checked in at 7:15 for a 7:30 appointment and was called back at 7:35 where I waited a long time.  I can only assume the doctor was reviewing my information.  She was very thorough.  She first asked a lot of questions, all of which I had answers to written out ahead of time for her.  She reviewed my document but did not keep it since I also had to fill out another form there with similar information.  After answering lots of questions about pain levels, history, what I've done thus far, complicating factors, etc. she went into a very thorough review of my films.  The X-Rays (where I bend forward and back) shows arthritis in my back.  I didn't know that!  The MRI shows that my discs are relatively healthy (plump, full, etc.) although L4/L5 is what she would describe as "stenosis" but she would not call it "severe degenerative disc disease" as it's been called locally.  When she switched views on the MRI from a side view to a cross section, she called the L4/L5 area "angry looking."  It is the source of all of my issues, including the slippage (spondylolisthesis) causing instability.  We then switched to a physical exam.  She did a neurological exam and tested strength.  She quickly found the "ouch" spots - the L4/L5 location as well as the tailbone.  She referred to both as "tender."
She explained that surgery is called for when you have three issues:

1. Weakness (I have none)
2. Loss of control of bladder and/or bowel (thankfully not)
3. Pain that is not resolved by other means (this is the category I fall into...but we've not yet exhausted other means)

Bottom line:  We are going to try gabapentin (Neurontin) because the pain that causes me the most issue is nerve pain.  The nerves are compressed at L4/L5.

Other stuff I learned:

She is OK with putting off surgery because my neurological exam was "reassuring."  She realizes that for me, one surgery is really two since I'd need to do neck surgery first to resolve the hyperparathyroidism.  She did say that most of her patients in my situation do opt for surgery and that planned elective surgery is much better than emergency surgery.  But for now, we will exhaust other options.

She is a big fan of Physical Therapy and is glad I did it and wants me to continue the exercises daily.

The epidural injections are "useful" from time to time and she said to continue doing that locally at the pain clinic as I see fit - not to exceed 3-4 injections per year.  I've only ever done two.  She suggested injecting at L5/S1 and letting the medicine "spread" from there.  I'll mention that to the pain clinic.  I'll plan an injection before vacation.

For tailbone pain she suggested a cushion with a cutout.  Mayo has a great store, so I bought one there for the ride home.  It did not help one bit.  Oh well.

The physical therapist has me doing a "nerve glide" or "nerve flossing" exercise.  She said "it can't hurt" but she doesn't know if they help any.  I'll keep doing it - it takes 1.5 minutes a day.

No chiropractor care allowed.

She said some of her patients get relief with acupuncture.  There is no literature to support that, but she said "it can't hurt" so I can try that if I want to.

She does not prescribe back braces that often.  I'm using one from the surgeon.  She said she prefers that I do core strengthening to create my own "corset" made of muscle, but if the brace reminds me to not bend at the middle, she is OK with it.  I sensed she really is not a fan, so we'll see if that's something I can minimize.

Stretching - she said to be careful as it can aggravate the nerves in the legs.  She noted that my hamstrings are very tight and said to "go easy" with stretching.

She said weight loss is always a good thing, so I need to keep at it...I fall on and off the Weight Watchers wagon several times a week...gotta get it in gear!

Swimming - she loves that I'm in the pool.  She said pool exercises are great and to keep that up.

Please pray that the gabapentin provides some relief without side effects.  Biggest side effect is sleepiness.  If that's only at night, this might be a good thing ;-)

As always, the pain gets lifted up in prayer as a reminder of how blessed I am.

DEXA scan results

So I'm heading to Mayo Clinic on Wednesday to be seen in their Spine Center. In preparation I have to hand carry all my test results. They have all of them there already since I brought them last time, but not the DEXA bone density scan I did on January 31. So I finally tracked those results down (that alone is yet another story) and I am in possession of the disk. Of course, I popped the disk into my laptop and read the results. The good news is no significant change from the last scan several years ago. The bad news is the percent bone loss is significant. I have a T score of -1.5 in my lumbar spine and -2.4 in my hips. -2.5 is osteoporosis, so I'm on the bubble. I'M TOO YOUNG FOR THIS! But, hey, it beats the alternatives. You multiply the T score times 10 to get % bone lost - so I've lost 15% of the bone mass in my lower spine and 24% in my hips. Risks for Osteoporosis (I have Osterpenia) and the risks I have or don't have:
Family history - yup
Hyperthyroidism - yup via overdosing on thyroid hormone replacement for 18 years
Hyperparathyroidism - yup
Menopause - yup thanks to surgery in 2006
Smoker - nope - at least I got something going for me ;-p
So, you add that all up and it's no wonder I am so osteopenic.

I'll be at the Spine Center at Mayo Clinic on Wednesday. I'll post after that with more results. In the meantime I'll continue to offer up the back and leg pain for others worse off. I'm giving up Facebook for Lent - I'd prefer to give up pain!

WE FOUND IT!!!

I'm in shock! The mibi scan today found the diseased (benign) parathyroid!  HOORAY!  Why didn't we find it in October of 2012? Doc says better scanning machines. WOW - Mayo really is AWESOME! The 4D CT for tomorrow is cancelled. The next step is to get referred by my PCP (primary care physician) to the Spine Center at Mayo to see if they agree with the local doctors that I do need a spinal fusion. Why? Because we won't do surgery to remove the diseased parathyroid unless I need to do the spinal fusion. Why? Because we don't remove diseased parathyroids unless the following criteria is met:

• Calcium of 11 or higher. Mine is hovering at 10.1.
• Onset of Osteoporosis.  I have Osteopenia.
• Kidney stones or impaired kidney function.  My kidneys are fine.
• Bone healing needs to be optimized as in a spinal surgery.  This is where I'm at now.

I am thrilled with the results today!  I thought for sure we would not find the diseased parathyroid. But we did!  To make matters even better - the neoplasm is on the left side of my neck.  The cancer was on the right, thus the scar tissue from the ethanol ablation is on the right.  If neck surgery is required, it will be that much less complicated.  The parathyroid that was removed accidentally during my total thyroidectomy and central neck dissection in 1996 was also on the left side (left upper).  It was removed, cleaned, minced and reinstalled in the muscle wall of my neck.  The doc does not think the diseased parathyroid is the one that was removed and reinstalled.  We reviewed the surgical notes together from 1996...first time I saw them.  The hospital faxed them straight to Mayo and I never got to read them.  It was fascinating and I always thought I had just a total thyroidectomy.  Apparently I also had a central neck dissection.  Surgeon did a great job because I've seen some pretty large scars when neck dissections are done.  My scar is barely visible anymore.  ;-)

So, home tomorrow and back to physical therapy, swimming and I'll update things when I know what's going on with the Spine Center.

Mayo tomorrow and the next day...

Tomorrow is the sestamibi scan for the parathyroids.  I'm expecting they won't find anything since we did this test about 1.5 years ago and it was negative.  The hunt for the benign growth on the parathyroid is to "solve" the hyperparathyroidism (elevated hormone level) which will then hopefully lead to healthier bones and improved bone growth.  The next day is a 4D CT scan of the neck...for the same purpose.  These tests are pretty benign...a small dose of radiation for the "mibi" scan - like a dental x-ray.  While the stress of doing these tests is low compared to others I've faced, I'm still offering up the worry and discomfort for those who really are in need of it.  I have two people in my life, one in my work life and one in my family, who are facing some pretty significant cancers.  They happen to share the same first name, so I'm doing double duty when I pray for one of them - the other is automatically mentioned.
In the meantime, physical therapy is really helping me a lot.  I'm a lot stronger.  Pain level is not less in terms of overall pain level - some of the exercises actually make it worse.  But the pain I can predict (e.g. before I move a certain way) is now mitigated by first tightening my abs.  That action forms a corset about the spine and helps the spondy (slipping vertebrae) not get aggravated.  So, I remain hopeful.
More updates as things unfold...in the meantime, if you are so inclined, please pray with me for those who are really suffering with cancer in their life.

Swimming

I'm going to swim today.  I could not make the morning swim due to the snow.  I've done research on-line about healing from bone fusions with elevated parathyroid hormone and can't find anything.  I need to correct an error in my prior posting.  The neoplasm on the parathyroid is likely a benign tumor, not cancer.  I'll update you on how things go Tuesday and Wednesday at Mayo.

Not what I expected...

Some day I'd like to go to the doctor and hear "you're doing great, go home."  Thyroid cancer wise, I'm doing fine.  My neck ultrasound was clean.  There is a new nodule that they found which appears typical and normal, but we'll have to look at it again in a year...just in case.  My Tg cancer marker was 0.2.  The bottom of the detectable scale is 0.1 so this is considered to be so low that it's not significant. (I would have preferred undetectable like last time).  It's only significant if it continues to climb, so we check that in six months.  All in all, not too bad for a ThyCa check up.  TSH is 0.8 so medication level is fine.
So the appointment was going well until I mentioned I need a back fusion for the spondy (see prior posting). My surgeon suggested I ask the endocrinologist if there are some medications he might want to prescribe to increase the chances of bone growth and healing post surgery.  The doctor at Mayo fears the opposite...that my hyperparathyroidism may hinder the healing of the bone fusion.  Ugh.  If I walk more than about 100 feet, my legs go numb.  It's getting progressively worse and I need the surgery...and now this.  I scheduled surgery for May, so I have time.
Doctor wants me back at Mayo next week.  Tuesday a Mibi scan to search for the diseased parathyroid.  If that scan comes up negative, then we will do a 4D CT scan of the neck the next day.  Beyond that I don't think we'll do more "hunting."  If we find the diseased parathyroid, it will need to come out.  Finding neoplasms of the parathyroid (a cancer, very tiny, usually easily managed, rarely spreads) can be challenging due to their size.  But the impact is compromised bone health.  Watching and waiting is OK until you need a back fusion...
So, all in all a decent visit to Mayo, but the primary hyperparathyroidism remains an issue.

The Count Down begins, yet again

Counting down to appointments at Mayo is always stressful.  Grandpa George used to say, when it came to doctor stuff, "Seek and ye shall find."  At the same time, I know that early detection is early cure.  I hope I am still clean from Thyroid Cancer.  I'll know more Wednesday and will post ASAP.  Wednesday a.m. I do fasting blood work.  An hour later I do a neck ultrasound.  In the mid-afternoon I see the doctor and get results.

I also go to see the back surgeon on Monday.  She's going to say the same thing she said last time - that I need to stabilize my back.  I did have a long chat with my PCP (primary care physician) last Wednesday about it and she agrees with the surgeon.  I asked how the back disease will progress...loss of bowel and urine control, inability to walk, wheelchair bound.  Great.  Fun.  Oh joy.  Note my sarcasm.

Mechanical issues don't worry me as much as cancer.  I figure I'm living long enough to have to deal with my back issues!  I don't feel I am in good enough shape to handle a 6 hour surgery and 3 month recovery.  So, I'm on a mission.  I will start physical therapy to get stronger and figure out how to exercise without hurting myself.  I'm back on Weight Watchers...well, I'm always on WW (at least I pay them every month) and I track what I eat...but now I'm eating within points range again.  It will come off slow, but hopefully I make some progress.  I'm going to investigate the new rec center in Waterloo - I'd like to be swimming or water walking - less stress on the bones.

As always, I'll keep my blog up to date.  Wishing all of you a happy and healthy New Year!

Spondylolisthesis

Known as "Spondy" for short - this is not a fun condition to have.  What it means is that I have a slipping vertebrae in my spine.  NOT a slipped disk (although I have that too).  L4 sitting on L5 slips 10 mm forward (towards my stomach) when I bend forward.  When I don't bend it's slipped by 3 mm.  Needless to say I now know why, when I bend forward or reach forward, it hurts like crazy.
Here's a photo of an X-Ray of me bending forward:

Here's the same photo showing how the vertebrae below this point are nicely lined up, then the slippage occurs:

It's taken 10 years to discover the diagnosis.  It started as sciatica.  I did physical therapy, lost 10 pounds, did T'ai Chi and it was manageable.  It started when I lived in Mexico (2003) and I recall the ride home being very painful and at times I could not walk.  About three years ago it got a lot worse.  I would just live with the pain and it would come and go - seemed I had good days and bad days, good weeks and bad weeks.  Last Fall it really was acting up but I was quite distracted with the Thyroid cancer recurrence.  So I didn't pay much attention to it.  Again, I just lived with the pain.  After suffering so much on a trip to Seattle I finally asked my doctor about her thoughts.  She said to go to the Allen Pain Clinic and get cortisone shots in my spine.  No way! was my reply.  She said "you can handle ethanol injections into your neck...I think you can handle cortisone shots into your back."  Okay, I'll give it a try.
The doctor did diagnostic injections of cortisone.  If it relieved the pain, then I was a candidate for radio-frequency ablation.  Of course we didn't know about the Spondy yet.  The injections were like magic!  For about a week I was pain free and I felt 10 years younger.  I signed right up for the radio-frequency (RF) ablation.  It gave me about a 10% pain relief and it lasted only a month.  I was so disappointed.  But I muddled through and had things to take care of (battling shingles, graduation for the kids, not to mention work and teaching a night class).  I just kept going and finally went back to Allen pain clinic and said that we needed to do something more, but not RF ablation.  It didn't work and it was not worth it.  So we did another cortisone injection - this time one that was meant to really treat the area.  That helped a lot.  The doctor also said he wanted to do X-Rays where I lean back and bend forward.  I had complained that bending forward was very challenging for me in terms of pain.  That's when we found the Spondy.  I was then referred to a Neurosurgeon in Cedar Rapids.
The Neurosurgeon said I had one option.  Surgery.  I figured an acupuncturist would have said I needed acupuncture, etc.  I was not happy with the idea.  6 hour surgery where the disc is removed and replaced with bone.  Screws are put into the vertebrae and used to pull the spine back into alignment.  Rods hold the whole thing together.  Three month recovery living in a "clam shell" for stability.  No thank you.  What other options do I have?  The surgeon recommended a brace for stability and back to see her in a few months.
When I first put the brace on, I hated it.  Now I don't like how I feel without it - the stability it provides really reduces the odds of the intense shooting pain.  In the meantime I've done research and mulled around this surgery idea.  While I'm still not sold, I'm getting there for a variety of reasons.
The biggest reason is that it's getting worse.  My feet are now numb and tingling most of the time.  On this last trip to Seattle for Thanksgiving I actually lost sensation in my legs while walking.  Try walking on two legs you basically can't feel.  It was not fun.  I also had a long chat with my doctor at the pain clinic - I asked about physical therapy, traction, etc.  Basically it won't help.  The area of the back that supports the vertebrae is essentially "broken."  The doctor is not sure if it's fractured or a birth defect.  Either way it's the same end game.  The other reason is that I do have hyperparathyroidism and osteopenia (precursor to osteoporosis) - so my bones are thinning.  Therefore, I likely have a small window to get this done.
So I'm mulling over the options.  I see the surgeon again in January and I'm thinking about waiting until early May.  I'd like to avoid slippery walking conditions for recovery.  I'd also like some time to get into better aerobic shape and lose some weight.  So, back on Weight Watchers (I'm always on it, sometimes I cheat more than other times).  I actually lost a little weight over the Thanksgiving holiday travels.  I'm back to using Chi focused exercise - Chi Kung or Chi Quong this time.  And as always, the dogs keep me moving.
More to come as this unfolds...hey, at least it's not cancer!  ;-)

The magic of Jelly Beans

No it's not a story of Jack and the Jelly Bean Stalk or anything like that.  It's just that Jelly Beans can be magic for those of us with a sensitivity to Fructose.  So, here's how it works:
Lots of us have symptoms of Irritable Bowel Syndrome (IBS) when it's really an inability to digest Fructose and/or Lactose.  Or, if you are lucky like me, BOTH!  Since being diagnosed with Lactose Intolerance (years ago) and Fructose sensitivity (more recently), I've been feeling MUCH BETTER!

So, what are my coping strategies? 

For the Lactose I use Schiff's Digestive Advantage, Lactose Defense Formula.  You take it twice a day for a week, then once a day after that.  I can eat anything now - even ice cream and cheesecake.  Now, it's not helping my diet but it sure tastes good!

For the Fructose - well - that's different.  For starters I try to avoid foods high in fructose.  Fructose is fruit sugar.  Foods naturally high in fructose include apples, pears, dates, raisins, figs, apricots, any foods that contain High Fructose Corn Syrup (HFCS), any foods that contain "golden syrup" (popular in Europe), iceberg lettuce, tomatoes, grapes, fruit juices, etc.  Most of the time I can control what I'm eating, but what if I manage to injest something high in Fructose?  Eat JELLY BEANS!

So, how does it work?  Well table sugar - which does not cause me issues - is a balance of glucose and fructose.  Glucose + Fructose = Sucrose (table sugar).  It's about 55% glucose and 45% fructose.  When that ratio gets flipped and the Fructose goes up - then I can't digest it.  But, if I pop jelly beans (they are made from Glucose syrup) I can push the ratio back in my favor - adding glucose and allowing my body to digest.  I also keep glucose sugar in the house (Dextrose is the name) and will sometimes add it to recipes (replacing some of the table sugar) to again insure I can digest properly.

Oh the magic of chemistry!

Off Synthroid and on Tirosint

Lots of Inspire folks are asking me about my experience on Tirosint.  For those of you who don't know, Tirosint is a relatively new drug formulation.  It contains the same active ingredient as Synthroid known as T4 (Thyroxine).  When T4 kicks off an iodine molecule it becomes T3 (Triiodothyronine).  Anyway, ingredients of Synthroid, besides the T4, are: 
Acacia, confectioner's sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc. Then colors are added depending on strength of the tablet.  These colors include FD&C Yellow No. 6, Aluminum Lake, Red No. 40, Blue No. 2, Yellow no. 10, Red No. 27, Red No. 30 and Blue No. 1.

The ingredients of Tirosint are T4, gelatin, glycerin and water. 

So I switched to Tirosint after my February appointment.  I immediately saw an improvement in brain fog (less of it).  Then I noticed that the symptoms of being hyperthyroid were setting in.  I had no change in dosage with the switch, but the manufacturer recommends lowering the dose.  Symptoms of being hyper for me this time were insomnia, heart palpitations and intolerance to heat (even worse than usual), plus loose bowels.  I know, too much information.  But this is real for us ThyCans.  I wasn't sleeping much and when lying in bed I was roasting, sweating, etc.  I also had added one Brazil nut per day for the Selenium to help with T4 to T3 conversion.  The brain fog was gone but I was starting to feel like I was burning the candle at both ends...and I was because since I could not sleep much I was working.  I got pretty run down and ended up with shingles.  When I went in for that, I had my TSH tested and it was too low so I called my Endo and he lowered my dosage of Tirosint from 137 four days per week and 125 three days per week to just 125 every day.  He let me skip a few days inbetween when I made the switch.  I had helped myself to skipping two days so I could get some rest.  He suggested another two days.  Since on the new lower dosage, I feel much better.

The other interesting thing is that I'm better able to manage my weight.  I went through a number of celebratory meals and did not gain anything and recently I've lost about 6 pounds following Weight Watchers.  But it's not just the Weight Watchers...I live on WW.  I call it my weight maintenance plan.  It's hard to budge the scale.  But since switching to Tirosint I'm able to lose weight on WW like I did years ago.  Now, if only I can stick to the program ;-)

Anyway, that's my Tirosint story.  I like it!