Thursday, December 1, 2016

01Dec16 Update

Lots has happened since my last post.  My spondylolisthesis got much worse and I lost the ability to work 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

Saturday, April 30, 2016

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.

Friday, February 5, 2016

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.

Wednesday, January 20, 2016

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).

Saturday, January 16, 2016

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!

Thursday, January 14, 2016

Doing well!

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

Tuesday, January 12, 2016

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!!


Monday, January 11, 2016

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...

Monday, January 4, 2016

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 stearatepovidone (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...

Tuesday, December 22, 2015

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!!

Thursday, November 19, 2015

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.

Tuesday, June 23, 2015

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!

Saturday, June 13, 2015

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!

Tuesday, July 22, 2014

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.

Friday, April 11, 2014

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.

Sunday, March 30, 2014

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!

Sunday, March 9, 2014

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!

Wednesday, March 5, 2014

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.

Sunday, March 2, 2014

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!

Tuesday, February 11, 2014

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.

Monday, February 10, 2014

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.

Saturday, January 18, 2014

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.

Wednesday, January 15, 2014

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.

Saturday, January 11, 2014

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!

Saturday, December 7, 2013

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!  ;-)

Wednesday, September 4, 2013

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!

Monday, July 1, 2013

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!
 

Thursday, May 23, 2013

Mayo check up this week - went well!

Monday was blood draw day - my mother-in-law rode with me for company.  By the time we got back to Iowa the results were online.  So I had preliminary info and was pleased with the thyroid numbers.  I'll get to those in a sec for you technical folks who care about those details.  Today was the actual doctor visit with Endo number 4.  Bob traveled with me and the conversation was very good.  So, first the numbers, then a summary of the conversation with the doctor.
TSH = 0.3 - bottom end of normal - slightly hyperthyroid per the doctor
Free T4 = 1.7 - towards the top end of the scale - confirms being slightly hyperthyroid
Tg - thyroglobulin - cancer marker - less than 0.1 or undetectable - HOORAY
Vitamin D, Calcium, kidney function, Phosphorous - all normal - and Calcium dropped from 10 to 9.5 but statistically unchanged since it varies up to one point based on hydration levels.
Fasting glucose 105 - high - prediabetes is greater than 100
A1C = 5.9.  Top of the scale is 6.0...above 6.0 is prediabetes and 6.5 and up is diabetic.
Parathyroid hormone is elevated at 95.  Top end of normal is 65.  It's down from 110 in February but statistically the same since this value migrates up and down every 15 minutes.

Doc was really pleased with the thyroid numbers and asked how I feel on Tirosint - the replacement for Synthroid that I'm now taking.  We recently reduced the dosage during my bout with shingles due to racing heartbeat, along with upping my beta blocker.  On this lower dosage, I feel much improved - of course still somewhat hyperthyroid but that's par for the course with metastatic ThyCa.  He asked if I "like" Tirosint (vs. Synthroid).  I said yes...much less brain fog and easier to maintain my weight.  He was pleased.  I told him that I've lost 12 pounds since a year ago and he said that was good and should go a long way to fending off the diabetes tendency.  He thought if I lost another 10 pounds I should be able to fend off diabetes and improve my A1C.  He is super pleased with the cancer marker being undetectable on their machine.  He said that there could still be microscopic cancer but even if my Tg rises, they'd likely not find anything to treat.  It took 16 years for this last recurrence to reveal itself (although I think U of Iowa missed it for a couple years) so since it's so slow growing, he's comfortable with a neck ultrasound and full blood work up in January of 2014.  He's not yet comfortable waiting a full year on the calcium levels.  He's convinced I have primary hyperparathyroidism (I am too) which means one of the parathyroids is "going bad" and we've just caught it early.  If he sees calcium hovering in the same range next time, I'll likely get a year off.  If it's creeping upward, we'll keep testing as surgery is warranted if it's 11 or higher.  Sometimes it just stabilizes, even with a bad parathyroid - so that's what I'm hoping for.  He wants me to do another DEXA bone scan due to the risk factors for osteoporosis.  I'll do that locally.  He said several times "you're doing great."  When he said good bye to us he said "it's nice to give good news to people."  I had said that I'd recommend ethanol ablation to any eligible patient who meets the criteria as it's been so successful for me and spared me surgery, radiation, LID prep, disability, etc.

So, I'm going to enjoy the "time off" from Mayo (although the stop off at Trader Joe's on the way home to pick up a few goodies will be missed - but I'll do that elsewhere) and focus on the 10 pounds that need to disappear.  Ugh.  :-D

Saturday, May 18, 2013

Mayo this coming week

Monday I'll trek up to Rochester for testing...just blood work this time.  My mother-in-law will come along for company.  Results will surely be on-line before I see my endo on Thursday.  Hopefully Tg (cancer marker) remains undetectable and TSH is suppressed enough to keep the doctor happy but high enough to hopefully stay on my new dosage of Tirosint - 125 mcg daily.  I'll update the blog here as usual.

In the meantime, shingles have cleared up - leaving a not-so-nice scar on my face.  Oh well, another battle wound.  The sore in my right ear is healed up also and I have some ongoing numbness and tingling on that side of my face - that might or night not go away.  I also get the occasional nerve headache on that side too - but only when really tired or worn down.  So, it's been a nice reminder to slow down and rest sometimes...not my best ability.  Pink eye cleared up and sinus/head cold/sore throat stuff was knocked right out by the Z-pack - without the Zithromax, I'm sure I'd still be sick...Bob too since he could not knock his sinus/head cold either/sore throat either.

Maybe the warm weather will bring some good health!

Thursday, May 2, 2013

Three steps forward, two steps back

Well at least I'm making some progress. The shingles are improved ... the pink eye not so much. The pain and burning sensation from the shingles remains. but it's much better than it was. Can't help but think that my immune system must be under attack. I also have a nagging sore throat that's been going on for two weeks. Maybe it's time to call the doctor ... again.

Pink eye

Pink eye on top of shingles.  I took this photo a few days ago.


Wednesday, April 24, 2013

Progress

Mayo endo called today. With TSH of 0.14 and hyper symptoms, I get to skip 2 days of meds and then start on a lower dosage of Tirosint.  Small victory!
Shingles lesion on my face is drying out. The one in my ear has not yet. I'm starting to feel a little better.

Saturday, April 20, 2013

Shingles progression

Now have sensitive spots up in my hair, right ear and this ugly thing on my face is angry looking.  :(

Friday, April 19, 2013

Shingles, ouch

The latest challenge.  The sensation is like electric shocks across my face and scalp. I'm on an antiviral med.


Thursday, February 21, 2013

ETHANOL KILLS CANCER!!

Imagine a world where you get diagnosed with cancer that has metastasized to your lymph nodes...and instead of that striking fear in your heart you figure - oh, no big deal.  A shot of alcohol into the cancerous lymph node and you are good to go.  No surgery.  No chemo.  No radiation.  Crazy, right?  No - this is my reality!!
I just got home from Mayo Clinic where I met with Endo number 4.  He was very pleased with the ultrasound - it showed the cancerous lymph node had shrunk by half and had no blood flow in it.  Combine that with an undetectable tumor marker and he said "it doesn't get much better than this!"  I agree!
I have three months off - in three months we retest everything.  We'll add Vitamin D to the test since that's tied in with the calcium and parathyroid hormone.  If I feel well and if the test in three months is OK, then the next neck ultrasound is in 6 months.
He is switching me from Synthroid to Tirosint at my request.  Hopefully that improves quality of life.  He did say that my calcium is hanging out at a value of 10.  Surgery is indicated after it gets to 11 or higher.  So I'm praying that it just hangs out at 10.  I don't want more neck surgery!!  He said he needs to test me further (more calcium blood draws over time) to get a feel for if my calcium is stable or creeping upwards.  At Mayo it's stable at 10.  If we factor in prior tests from U of Iowa, then it's creeping upward...but Mayo only trusts Mayo's lab.
Since the doc at Mayo is an Endocrinologist and therefore a diabetes specialist - I had him check my fasting sugar and my A1c.  My fasting sugar was good today - 94.  But my A1c was 6.0%.  From 5.7 to 6.4 puts me at risk for diabetes - prediabetic.  So, the next battle is to get that number down.
All in all I remain impressed with Mayo - although he did not test my T3 and refuses to.  He said the test has no value (disagree, strongly).  Oh well, small sacrifice to be switched to a doctor that caught the cancer and cured it vs. Endo number 3 who watched it cook under her nose for a few years. 

Monday, February 18, 2013

Mayo Lab Results

We live in an interesting world - lab results from Mayo Clinic are on-line already - I only just got home from Rochester.  The neck ultrasound results are not on-line yet.  Here's blood work:
Calcium 10.0.  Normal is 8.9 - 10.1.  This is high normal and highest it's ever been since we started testing - but unchanged since October.
Parathyroid Hormone (controls calcium) 110.  Normal is 15-65.  This is the highest it's ever been - explains the high calcium...it's up since October yet Calcium is holding steady.
Needless to say, these two results are not great...but could be worse.  The Endocrinologist will determine next steps - my guess is more "watch and wait."  So long as we keep that Calcium in the normal range, no need for neck surgery and that's my goal.
Creatinine is high normal at 1.0, this is fine.  Phosphorus is 3.2 - normal, and this is fine.  This means the high calcium is not impacking my kidneys.  I don't see Vitamin D results - not sure if not tested, or just not available on-line yet.
As for thyroid cancer numbers - some good news!  My TSH is down to 0.9.  The Endo is aiming for 0.5ish so he'll likely prescribe more Synthroid (yuck).  My free T4 is normal at 1.6.  There are no Free T3 results - so not sure if he didn't test it (if not, I'll be annoyed) or if it's not posted on-line yet.  Tumor Marker of Thyroglobulin is less than 0.1 - that's down from 1.2 before ablation!  This is likely partially due to my TSH being lower but more importantly it's an indication that the ablation is working!  My Tg antibodies remain below 20 - they always have been - meaning that the turmor marker test is meaningful.
As for the neck ultrasound, I only know what I saw on the screen during the exam.  I clearly saw the cancerous lymph node that was ablated in November.  It was plain as day - peanut shaped and all.  I even asked the tech if that was the one.  Yup.  I have no idea if it changed in volume - no scale for me to measure against while lying down on an exam table.  But, when she turned on the doppler, my untrained eye did not see any vascularity - i.e. no blood flow.  This is a good thing.  But, this is not the doctor's interpretation, so I'll have to wait on the official word.
I see the doctor (or plan to see him) Thursday.  But we are expecting a bad storm accross the mid-west.  So, we'll see if that gets rescheduled.  Of course, I'll keep you all posted!

Monday, February 11, 2013

Pain

Pain is awful.  It's silent   My sciatic nerve pain, stemming from a severely blown disc in my back (L5-S1) reached a point where I could no longer handle it.  I don't take narcotics.  I don't pop Aleve.  I just deal with it.  But dealing with it means I get it together for work and teaching, then I crumble and can't do much more.  The worst part - sleeping.  Just the act of turning over in bed from one side to the other was enough to nauseate me with pain and cause me to moan aloud in my sleep.  Flying to see my daughter in Seattle was so so so painful...by the time I got there I was cripled.  Literally.  Not able to walk without extreme pain.

I went to the Allen Hospital Pain Clinic on the advice of my PCP (primary care physician).  I didn't want to go...didn't want more medication, more treatments, etc.  But, the doctor was amazing and he really listened to what I endure.  He showed me my MRI in great detail and explained why I feel what I feel.  Not only do I have the disc that's blown, but I have a fluid filled benign cyst blocking the nerve.  The swelling and narrowing causes the nerve root to be inflamed and sends sciatic nerve pain down both legs...the right is worse than the left but both are awful.  I have been trying to exercise to help it but it backfires.  I walk on the treadmill, or outside with the dogs then have to lay down.  That did NOT surprise the doctor!!  He explained that the increased blood flow to the area will cause even more swelling of the nerve.

So, he suggested four shots into the facet joints on either side of the bulged disc...guided by xRay.  I figured I should at least give it a go.  This is diagnostic and if there is relief then the next injection uses just heat to slow the nerve transmission down...next step - no drugs??  I'm in!  I said "when can we schedule this?"  He said let's do it right now.  This was last Tuesday.  Are you kidding me?  I had not brought a driver with me. He said "that's OK."  I said "I have to be on my feet tonight to teach for three hours."  He said "that's good - I want you to do everything you'd normally do."

Well, he put the cortisone in, after pain killer, and it went smoothly for the first three injections.  For the fourth, I said "owie."  He decided that he had hit the cyst, based on my reaction, so instead of injecting he pulled the other way and drained it!!  Yippee!  He was so thrilled.  He showed me the cystic fluid - thankfully I'm not squeemish.  Then he injected the cortisone.  Well, for the first time since 2002 I was able to walk without sciatic nerve pain.  It was at least an 80% improvement - not pain free, but much better.  The lower back muscular pain is still present, but the nerve pain is much reduced.  The pain relief lasted well for two solid days and now it's slowly returning.  You can't see pain in others but my husband could see the lack of pain in me.  :-)

So, I'll keep working with the pain clinic while I count down to Mayo on the 18th and 21st of Feb!

Sunday, January 20, 2013

Counting Down to Mayo Visit

In one month I'll be sitting in my Endo's office, finding out how things are going.  Is the ethanol ablation working?  Do I need more?  Watch and wait?  Did my Tg tumor marker go down?  How's my TSH doing? And it's important to not forget why I went to Mayo in the first place...how's the parathyroid hormone doing and what's my blood calcium level?
I'm keeping myself busy between now and then...working full time, providing support for ThyCa on Inspire, starting to provide support for the ThyCa toll-free number, teaching, blogging, etc.  Busy is good.
The only down side right now, aside form the usual hyperthyroid symptoms, is back and leg pain.  Ugh, I hate my sciatic nerves (both sides) and I hate having slipped discs in the back.  I also hate having hyperparathyroidism which adds to the issue of bone loss.  So, I'll see my regular doctor to chat about that and I'll keep up the visits with the Chiro.  She actually did an adjustment that erased the leg pain for a whole day.  That in itself is a miracle!  Tomorrow, at the encouragement of a "Deere" friend, I'm trying therapeutic massage - not in a fly by night spa - but at the local hospital.  The therapist comes recommended by my Chiro and they work together to help with pain relief.  I hope and pray this works!
In the meantime, I wait patiently (OK, not so patiently) for Mayo - blood work Feb 18th, Doc visit Feb 21st.  I hope the roads remain snow free.

Friday, January 11, 2013

The Paradox of HyperThyroidism

I often find myself writing about this paradox when on Inspire.  So, I thought I'd blog about it here and then direct some of the Inspire folks here - just to save myself some typing ;-)

So, why is hyperthyroidism a paradox?  Because when hyper, one should lose weight.  Instead we gain.  At the thyroid cancer conference, another veteran and facilitator told me the average weight gain after diagnosis is 40 pounds.  In this case, I don't like being "above average."  So, how does it happen?

Well, when naturally hyperthyroid, a symptom is weight loss.  But with iatrogenic (doctor induced) hyperthyroidism, we are hyper due to a synthetic pill.  The result is that we are hyper all the time - even when we are trying to sleep.  Sleep becomes elusive, and the sleep we do get is often not restful.  We are constantly "racing."  Racing heart, sweating, etc.  This in turn makes us tired.  When tired, we don't exercise.  So, the lack of exercise becomes part of the paradox. 

Also, when hyperthyroid the body is truly hungry.  It thinks it has to eat since the metabolic rate is so high.  So, there is extra caloric intake if not very strict about counting calories or points or carbs or something.  So, another paradox is that we tend to get more calories due to being so hyper and thus being hungry.

Thus, the paradox of hyperthyroidism is that we should lose weight and we should have more energy, but instead we are tired and we gain weight.  This paradox is annoying as heck. 

Tuesday, January 8, 2013

Mayo Follow-Up Scheduled; Did I Mention I Hate Being HyperThyroid??

Mayo - the testing will be done on Feb 18th.  The consult with the doctor will be Feb 21st.  I'm avoiding Tuesday and Wednesday due to my teaching schedule - just in case weather interferes or appointments end up being late.
Did I mention I hate being Hyperthyroid?  The new Synthroid dosage - yuck.  Symptoms of hyperthyroidism: 

  • Sudden weight loss, even when your appetite and the amount and type of food you eat remain the same or even increase (oh how I wish)
  • Rapid heartbeat (tachycardia) — commonly more than 100 beats a minute (yup - mine's around 90) — irregular heartbeat (arrhythmia) (yup, PVCs worsen)  or pounding of your heart (palpitations) (yup)
  • Increased appetite (yup - manage that by counting Weight Watcher's points most days)
  • Nervousness, anxiety and irritability (yup, yup and sometimes yup)
  • Tremor — usually a fine trembling in your hands and fingers (oh yeah)
  • Sweating (always)
  • Changes in menstrual patterns (gutted and tossed - thank God)
  • Increased sensitivity to heat (oh, like you can't believe - and no, it's not a hot flash - I know the difference)
  • Changes in bowel patterns, especially more frequent bowel movements (yup, not fun)
  • An enlarged thyroid gland (goiter), which may appear as a swelling at the base of your neck (well, since I don't have one, I don't have to worry about this)
  • Fatigue, muscle weakness (very much so)
  • Difficulty sleeping (oh yeah)
  • Skin thinning (Not too bad, some)
  • Fine, brittle hair (Fine, no.  Brittle, yes - oh, and did I mention gray?? - Lots of new gray)

Sunday, December 23, 2012

The Eve of Christmas Eve

It's the 4th Sunday of Advent.  Tomorrow is Christmas Eve.  The journey of healing from this third bout with thyroid cancer has been interesting.  My neck range of motion if not fully returned.  I can not tilt my head away from the area of treatment (ear to shoulder) without a strong tugging sensation.  I'm afraid to push it since I know it's full of scar tissue around blood vessels and such.  So I gently stretch a bit more and more each day.  I had given up the chiropractor temporarily with the diagnosis - too much to focus on and no spare time in my schedule.  I finally went back last week.  I asked her to not touch my neck so she worked on me from mid torso down.  It helped a lot to just get straightened out - my lower back was a mess (still is, but slightly better with her help).
Admittedly, the worst part of all this is the adjustment to Synthroid.  The increase has led to the usual...insomnia, fatigue, brain fog, loose bowels, headaches, intolerance to heat, sweating, etc.  Being overdosed on Synthroid to the 0.1 range of TSH is not fun at all.  I am not sure what my TSH is right now, but last time I took this dose I approached zero.  I wait until February to find out.  In the meantime, it's a small price to pay to keep thyroid cancer from returning (hopefully).  And this journey is easier than what most others with cancer face...so I am blessed.
Christmas approaches.  I'll get on that plane to visit Olyvia...can't wait to see her...don't want to feel the ear pain...don't want to feel the back pain (getting smart this time and taking the muscle relaxant BEFORE the flight rather than the night after when I'm twisted in knots)...but the pain will disappear when we are all together for the holiday (at least I won't think about it as much).
My Christmas gift this year is the gift of healing, thanks to good doctors and new treatments!  Merry Christmas to all, and to all a good night!

Monday, December 3, 2012

A Reflection on Waiting

I was asked by a dear friend to give a reflection on "waiting" before Mass started on Saturday evening.  Advent is the season of waiting...awaiting the birth of Christ - or the celebration of that birth.  Awaiting His second coming - whenever that may be.  We spend a lot of time waiting in our lives.  I wrote this without even thinking about the fact that I am again waiting - waiting for the follow up in February.  In the meantime, I am struggling with being very hyperthyroid - heart racing and fatigue being the worst part.  Otherwise, I've healed well and now I wait...yet again.

Here's the reflection:
The season of Advent is a season of waiting. Advent gives us a chance to reflect on how we wait for God and how God waits for us. My name is Daria Jerauld and I have a story about waiting to share with you.

I've done a lot of waiting in my life and we all know the expression “The Waiting is the Hardest Part.” In 1996 my husband Bob and I were waiting patiently for the adoption of two children fro
m Russia. We were one and a half years into the process – patiently waiting on God to match us up with our future children – when I was diagnosed in March of that same year with Thyroid cancer. We were devastated. The tables were turned and now God was waiting on me – waiting for me to cope with the diagnosis, waiting on me to heal and waiting on me to stop being upset with God. "Hey God – why did you do this to me?"

I went through surgery, radiation and the healing process began. I got home from radiation treatment greeted by a phone call that we’d been matched up with our children!! A beautiful five year old boy and a precious four year old girl. Life was back on track – Thank you God!  And we waited...waited for that phone call to say “pack your bags, it’s time to travel to Russia to pick up the kids.” Then in early August while patiently waiting, I learned that the sneaky thyroid cancer was back. I needed more surgery. This was NOT part of the plan. I waited on God for a sign…should a woman with cancer be adopting children? Would they come here only to lose a mom for the second time in their lives? I waited on God for an answer and He waited on me to find peace in this crazy situation.

I went to Mass the day before my surgery – it was August 15th the feast of the Assumption. Fr. Norm White said Mass at St. Anthony’s in Dubuque. After Mass I asked him for the blessing of St. Blaise – the patron saint of issues of the throat. He graciously offered the blessing and then said “Why are you asking for the blessing of St. Blaise in August – normally we do that blessing in February?” I gestured to the scar on my neck – “Thyroid Cancer.” He ripped off his Roman collar and said “Me too, 1962.” That was the sign I had waited for – a message from God that I would live and be able to raise my children. I went through surgery and waited, as I healed, for that phone call that it was time to pack our bags. About a week after surgery the phone did ring – but it was a fellow parishioner calling to say that Fr. Norm had died. I was so sad. I said my prayers for him and it occurred to me that he’s now a Saint. I turned my eyes towards Heaven – well actually my kitchen ceiling – and said “Hey, St. Norm. Get to work up there. I need to get a phone call so we can fly to Russia to get the kids.” Literally that same morning our phone rang. The waiting was over – pack your bags it’s time to fly. Exactly one month to the day of my second surgery, Bob and I were standing in a Russian orphanage meeting Alek and Olyvia for the first time. God waited on me to come to terms with my illness. I waited on God to match us up with the most wonderful children. There’s another expression that comes to mind. “It’s worth the wait.”