Update end of 2016

November is my "cancerversary".  It's when I got my thyroidectom...ies.  So every year I go see the oncologist.  I see the endocrinologist about twice a year.  He's very thorough and really does look at my overall health, so I was fortunate there.   The endocrinologist was the one who felt my throat and immediately told me I had "nodules".  

This year there was only a Thyroglobulin blood test, so I got off easy.  Next year I'll have to have the I-131 and the scan ....preceded by two shots TSH manipulating shots....I think the whole thing ran almost $5,000 last time. 

Disclaimer:  What I went through was not pleasant, but nothing compared to what you other bloggers have gone through and are going through. 

I wanted to provide an update.  I feel it's important to document some of these things since that's why people come here (to see what's ahead...learn about the disease).

Had a bit of a revelation... Even though I didn't associate what I was feeling with being hyperthyroid, I was.
Of course this is done to suppress growth of any thyroid tissue in the body
My TSH was 0.08...so no wonder I was feeling:

Whole body: excess sweating,  heat intolerance (heat intolerance is a gross euphemism IMO)
Mood:  nervousness, or panic attack
Heart: abnormal heart rhythm, fast heart rate, or sensation of an abnormal heartbeat (as the Rolling Stones said "My heart is beating louder than a big bass drum")
Behavioral: hyperactivity (hard to sit still)
Eyes: very dry eyes
Also common: hair loss, muscle weakness, tremor  (I think I have familial or "essential" tremors anyway...and this doesn't help)
 
I work in a relatively old building...It's older than I am!...and they can never heat or cool the place reliably.  Today it was 79° where I sit...and I was in misery.  Ready to jump out of my skin.
 
I was also found to be low on vitamin D.  The endocrinologist wrote a prescription and I think that is helping the aches and pains...which I merely associated with getting older.
 
When I was at the oncologist, I asked him about the recent article about how they are wanting to remove the cancer designation from papillary thyroid cancer.  He said it was basically a very narrow subset that this could apply to. 
It almost sounded like he was disagreeing....and especially in my case.
 
Life is good, other than the panic attacks.
 
I pray for everyone with cancer.    Let's hope 2017 brings good news for everyone.
 
05 Jan 2017 Edit: 
TSH normal is around 1.0...(to give you a frame of reference for mine being 0.08. ) 
Also, when I was at the oncologist's, I asked him about the FNA sample that they took (at the hospital) and why it wasn't "conclusive".   He said the FNA samples are usually so small that it can easily be missed.
Sounds plausible, but when I read the biopsy report it cited many "anomalies" and didn't sound good to me.
Susan J likes this post.
Helen Marshall, Marcia sent you a hug.
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Wow...am sure most of us have had one or more of those symptoms from time to time...scary.

A question...if papillary thyroid cancer is not a cancer, what is it??

HUGS
Here's the article:
http://jamanetwork.com/journals/jamaoncology/fullarticle/2513250

I think the idea behind it is that "encapsulated" occurrences do not pose a near term threat and can be watched. This prevents over-reaction and over-treatment. However, the doctor's reluctance to classify my "occurrence" as cancer ended up making me undergo a second operation after they took out the side with the nodules and found that it was indeed cancer.
Forgot to say that some variants (particularly Anaplastic and medullary which is genetic) are particularly aggressive and have much poorer prognosis.
Wow, while the"experts" argue about what is or is not cancer, the body just acts.

So glad you have a skeptical doc.
would you read my post to Sterling and comment if you have any ideas that might help out my brother...thank you
Could you message me with the text of the post to Sterling, not sure which one you mean..the one about Anaplastic etc??? and I will try to help..
My husband has some sort of thyroid thing (unrelated to his cancer) going on, so this is a very informative post for me. BTW, I have all of these symptoms - !! - and no thyroid condition as far as I know.
Happy New Year! 💜💪🏽
Helen Marshall likes this comment
I've been both "Hypo" and "Hyper"...neither is pleasant.
Happy and healthy new year to you and I pray for all with cancer.
TSH blood test is very routine and can give you an indication. Doctors shouldn't squawk too much about doing the test...especially if you're getting blood drawn anyway. It's not an absolute, but if your TSH is out of wack, you know you have a problem.
Thank you!
Hi Sterling! Sterling, I can't imagine having thyroid CA on top of essential tremor. Yikes. I see what Joe goes through, though he's doing well on the rx now. Thyroid has to be the most important gland in the body because it's responsible for more bodily functions. Even emotions, it seems! I worked in a bldg like yours too; half of us froze, the other half got darn heat stroke. Happy new year to you and Carla, hope it's fun yet uneventful! Gods bless. Love.
Hey Marcia. I have to keep a thermometer by my desk to say "it's you it's not the room". Most of this "stuff" is just getting old and going through a few things. The tremors are annoying at times. It's not a constant thing...Usually only becomes noticeable when I try to do something that requires a steady hand. It's mostly frustrating when I try to eat or drink coffee....and coffee might just add to the problem...but not ready to give it up.
Your point about how the Thyroid is the most important gland is spot on. Everything about your metabolism is controlled by that thing. A little too much or a little too little ...and you know it.
Thanks for checking in. Only three months till baseball.
Sterling
Marcia likes this comment
I have a question... my brother has been battling for the last 6 months maybe even the last year with lack of energy, and assorted other complaints. all checkouts and diagnostic tests have come back negative, he had cataract surgery on each eye... he is still frustrated with his vision and is still somewhat depressed. Also heart issues with irregularities (he now has a pacemaker).... listen to what he just wrote me....

" Still adjusting to the eyes. Distant vision good, but need glasses to see anything up close, and even then not great. Ok for reading, etc, but shaving, or anything close is not great. Just have to live with it. Eyes still very dry and frequently feel like something in them, especially left one, so keep putting drops in it. Dr says he could give me Rx, but I want less, not more, meds of any type.

Still fatigued most of the time, and some issues with alteration in heart meds. Had some sort of allergic reaction and dr took me off one of the meds, the ace inhibitor. Internist and cardiologist say the extra beats are better than the allergic issues, so being monitored over next month or so. Not really fun."

any thoughts? I mean he has been going to doctors and is fed up and depressed.... I think they are missing something.... I still feel something is going on with his thyroid, but he says they have thoroughly checked it out... he has Hashimoto's..... it just is nagging at me that they are all missing something.... I wanted him to go to ...I think they have a Mayo Clinic in Florida, a few hours from him... he is in Juno beach...near west palm beach....

I just thought I would throw this out here and see if anyone had any insights or helpful thoughts...I am concerned about my big brother who has always taken care of ME... he is 69 this coming July
Neal
I'm not doctor, but here's what I would say to your brother.
Most "internists" will just tell you you're getting old. Plus they play it safe and stick to the areas they are most comfortable with.

* * * Do some research, and go see a good Endocrinologist. * * *

The potential causes are many, and go far beyond the thyroid.
As a minimum I would request the following blood tests:
Thyroid Profile (TSH+TT3+FT4)
Hemoglobin A1c
COMPREHENSIVE METABOLIC PANEL
TESTOSTERONE
PSA

A good endocrinologist will look at many factors.
Having said that...he must have seen an Endocrinologist if they know he has Hashimoto's...
So that begs the question what are they doing about it?
Are they at least monitoring his TSH?

Every man knows that testosterone decreases with age. You just aren't going to feel like you did when you were 25.
So we are getting older, and that just can't be denied.

The following wouldn't be primary ...but still important:
I would also ask: "How are you sleeping?"
Are you active? You need lean muscle mass to metabolize energy properly.
It also helps to have a reason to get up. Sometimes you have to go beyond yourself to find that.
There are other things besides his diagnosis....

So lots of questions...but basically if he has been diagnosed....what in the wide wide world o' sports are they doing about it?
thank you for your valued input...I will talk to him and get more details and ascertain whether those diagnostics have been performed...I believe he is on meds for his thyroid... I don't know his meds list... I will find out, and follow up with him and will let you know what happens...thank you so much
I get my Thyroid blood tests twice a year. Also, most thyroid hormone is synthetic. It'll keep you alive and functioning, but it's not like what we were created with.
Encourage your brother to talk to his doctor about how he feels.
I will. Thanks
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Vital Info

Posts

November 12, 2012

Missouri

Cancer Info

Thyroid Cancer

October 31, 2012

Stage 1

No

Thyroidectomy

No energy.

Learning to be patient.

Mostly hypothyroid type symptoms.

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