Hashimotos encephalopathy

[carolT]

I was dx with Graves in 1977 then after PTU dx of  Hashimotos 1979. I have a diffusevery vascular goiter internally and externally enlarged growing below suprasternal notch.  Since 2000 severe muscle and tendon spasms. Since  2004 loss of balance and falling.  1.5 years ago I began blacking out (45min to 2 hrs) with aura of excessive yawning, chills and L head numbness. Post blackout I cannot move and have slurred speech and left sided numbness. One year ago I developed peripheral neuropathy of my L foot. 6 months ago my R suprspinatus muscle and biceps spontaneoulsy tore and now same is suspected in L arm.  MRI and MRA WNL , EEG WNL, EMG WNL, Nerve conduction study shows no sensory nerve function, reflexes +1 or absent. I have compression at T9 and herniated disk at L1. In 1992 I had CVA with L sided weakness and feeling that my LE's were not mine. No clear dx for stroke guess was vasculitis as sed rate high. On R carotid obliterated by thyroid.  Have had hormone related  migraines since age 13 now HA's in top of head severe w/ n and v.  I have seen 3 neurologists who dx migraines, Munchausens, and no dx but not MS. Pulmonologist says slight sleep apnea, no narcolepsy. Cardiologist all tests WNL except hardened diastolic accounting for occ. hypertensive crises.. Endocrinologists gave up on me as too complicated. Rheumatologist says fibromyalgia, she also checks thyroid and prescribed T3 60 mcg bid as synthroid and Armour cause yo yo effect and severe HTN.  I have also had Ca R breast 1993 (non hormonally linked), have been dx with high ANA and lupus, and fibromyalgia. All women on my mother's side of family have thyroid problems.  All members of paternal side have died of cancer - ovarian, lung, prostate.  My mother died of lung cancer but also had fallopian tube cancer.  I found website for Hashimotos Encephalopathy and symptoms fit. Have you treated this before or seen my type of symptoms. I would appreciate any thoughts and if you have any other suggestions.  

[Mark Lupo, M.D.]

The treatment for HE is high dose steroids -- it really is a tough diagnosis to make and some even debate its existence.  Would consider talking to neurology about high dose steroid trial -- also talk to Rheum about this.  Sometimes a lumbar puncture can help the diagnosis.  The dose of 60mcg bid of T3 is very high -- would be concerned about cardiac effects of this.  Is the goiter gone -- ie, is there vascular compromise or compressive symptoms from goiter?

[doc72]

I was diagnosed with H.E this year due to high levels of thyroid antibodies and neurological symptons such as numbness, tingling, burning, dizziness plus more.
Neuro give me steroids as tablet, they did nothing, then I went into hospital and had steroids again via the drip, also didn't work, so I doubt my diagnosis was correct.
H.E. is steroid responsive.
I have a multi nodular goitre also.
If you try the steroids or anything else, please let me know, I would be very interested in knowing if they worked for you.......