HELP! Neurological Complications - Autoimmune Autonomic Dystonia Post Thyroidectomy

[EyeseeGoodHealth]

Papillary Carcinoma, Follicular varient, forming 2.5 cm intrathyroidal mass, Chronic thyroidtits with features of Hashimoto's thyroiditis.

Post Surgery: They are clueless from there, it was post thyroidectomy that I ended up with  accute neurological symptoms.  Believed to be triggered by the cytomel, I had two Events with exertion started laughing, talking like I was drunk and passed out. These EVENTs triggered an EPISODE of my historical problem of facial weakness on one side, followed by extremity weakness on that side, later chest pressure after physical exertion.  Even the least bit of exertion exasperated symptoms.  I could walk to the bathroom urinate and walk back to my bed, a bowel movement and my legs would be so weak I could not stand.  I had total body weakness with exertion until taken off cytomel. The right side would begin to droop in the eyelid and cheek with just talking. I recover after rest, most of the way.lol


I have been told it is a pre-existing lupus-like autoimmune condition that is charactorized by an overactive autonomic nervous system (heart rate 200 bpm with physical stress when sick). SInce 1992, I have been told I have lupus, can't rule out MS, autoimmune neuropathy, idiopathic cardiomyopathy, exercise induced dystonia.  It is all the same to me.

I had surgery for papillary follicular cancer stage one 1.2.08, and had an apparent neurological reaction to the cytomel which became apparent on 1.8.08, symptoms of speech, and muscle weakness were extreme until removed from cytomel 1.12.08.  Within 24 hours I was walking and talking, with ony residual right sided symptoms.  I have been told my thyroid labs were normal, which is why I was denied an endocrine consult and refered for psychiatric care. (this is has resolved, no one believes it any more).

Now 1.21.08, after 9 days on the synthroid I noticed an exaccerbation of the fatigue and weakness. Yesterday I was told to stop the synthroid cold turkey, today I am told to stay on it.  What does a girl do?

I believe I still need to do an iodine scan, stage grouping II, T2, NO, MX

I am more concerned about underlying autoimmune & autonomic dysfunction, was it the horse or the cart - the thyroid problem to the auto-immune problems.  Since all my thyroid blood work appeared normal, while I felt symptoms that were typical hyper/hypo thyroid (hyper prehysterectomy/hypo post)

Normal labs (or so been told) elevated antinuclear antibodies, crest pattern, liver a little off, normal eeg, normal mri, normal ct scan, abnormal cardiac stres test but normal when resting.

AM I WRONG TO BELIEVE that NORMAL LABS while resting are NOT necessarily indicative of my NORMAL while "stressed".  It is proven the case with cardiac tests.

Any ideas?

[utahmomma]

I'm *SO* glad that you got the RAI and are doing better now.  Just the dump of thyroid hormones from the surgery could have triggered the manic condition.  I'm proud of you for pushing through the red tape and getting treatment.

How are you now?  How are your labs and your thyroglobulin (Tg) level now?

I'm glad that you are okay and that you checked back in with us!

HUGS

Utah

[amela321]

Though not nearly as extreme as what you've been through, I had a bad reaction to Cytomel as well.  I would get very dizzy about twice a day.  If I was standing when it hit me, I had to sit down immediately or pass out.  I stopped taking the Cytomel after 10 days and 2 days later, I was fine.

I'm sorry for what you're going through.  Take care!

Amy
Papillary thyroid cancer
Near total thyroidectomy and partial central compartment dissection Dec. 1985
RAI Jan. and Oct. 1986
FNA positive for recurrence March 2008
Tumor and partial central compartment dissection April 2008
175mCi RAI August 2008
Tg before RAI was 13

[redheadaussie]

You poor thing! I do feel for you. utahmomma is right. You do need to get some bottoms kicked big time and get the right treatment.
I know when I had my left side taken out in May 07 I had my left side of my face and my arm go like I'd had a stroke. No-one could pin down what it was. For over 15 years I had episodes of 'psychiatric disorders' Turns out it was severe Hashimoto's! Grrrrrrrrrrr....
Hope you get better soon!

[EyeseeGoodHealth]

Thanks for your response.  I did get help, after switching completely all my medical providers.  It turns out the "hospitalist" misread my psychiatrist note, it did NOT say that the problem was psychiatric at all. It said "I appeared manic, probably due to complications from the physical problems I was experiencing".  Only the hospitalist never read past the first few lines, and then all the other doctors followed her assumptions.

I did the RAI, and I am following up and staying on medications.Thank you,
again.

[utahmomma]

Um - you had a large nodule of thyroid cancer removed and it was Stage II (meaning it had spread outside the thyroid).  YES - you need RAI treatment!!!!

Your labs may be "normal" for now because of the hormone dump some experience after thyroid surgery but they aren't going to stay normal - you don't have a thyroid left to sustain "normal" levels.

You have cancer - you either need a referral to an endocrinologist or an oncologist NOT A PSYCHIATRIST.  The "MX" means that they can't rule out distance metastases.

Man - doctors drive me nuts some times.

PUSH this until you get a referral.  If your insurance or medical providers (if you are on a HMO or whatever) refuse - threaten with an attorney.  Remind them that you have CANCER, not a head cold.