HASHIMOTO'S ENCEPHALOPATHY

[kimc]

My neurologist has told me that I MIGHT have Hashimoto's Encephalopathy. I have had Hashi's thyroiditis for the past 10 years with/goitre.  I had a subtotal thryoidectomy 18 months ago, and 9 days later half my body became numb exactly half my right side.  I have seen at least 20 different doc's about this from GP's, endo's to neurologists.  I have been tested up like a lab rat. My Neuro thought it could be HE because of the high antibody and the way the numbness reacted to the prednisone (relief only lasted for a couple of weeks). With there only being 13 known cases of this in the US, I'm stumped because my symptoms aren't as severe as the other people who have HE, the ones that I've spoken to.  Do you know if there is any treatment for this disease? I'd rather treat the disease than the symptoms.  My neuro is great, but the only thing he knows to put me on is anti-convulsants which make my numbness worse. I have slight memory loss(could be kids and stress)I had twitching of my middle right finger 4 times. My thyroid needs to come down a couple of points and my endo is working on that. Here is my latest mri.w/wo contrast Again noted are 3 focal areas of abnormal increased T2 signal intensity seen in the white matter of the cerebral hem. on the Flair and T2 weighted images. These were also seen previously.There is one just infralateral to the atrium of the left lateral ventricle and another seen in the right periventricular deep white matter, and another near the posterior body of the left lateral ventricle.On the T2 weighted images, no significant change.Thank you.

[Willytac]

A related discussion, Still symptomatic, no answers was started.

[WendyS]

Kim.... perhaps you will visit the website, Encephalitis Global?  I know that topic was discussed there by a member from Buffalo, USA.  You could meet a kindred spirit!

[kimc]

I hope your able to read this, I understand that your really really busy.  But THANK YOU. I so appreciate your comments, I am going to see my neuro on Oct. 1.  
I haven't had a SPECT test so will ask him for that, I have had an MRI of the arteries; MR angiography of the vessels about the circle of Willis was done.  There is flow seen in both distal vertebral arteries, basilar artery, distal internal carotids and the anterior, middle and posterior cerebral arteries.  There is what appears to be very minimal focal bulding of the superior wall of the proximal right middle cerebral artery.  This is probably some junctional dilatation of no clinical significance.  Early aneurysm formatin accounting for this is felt to be less likely, but a follow up exam probably is warranted at some point to confirm stability and exclude development of an aneurysm here.  Otherwise no significant lesions are seen.  No areas of significant stenosis are seen in the major vessels.
I have absolutely no muscle weakness what so ever. It's strange.
I will ask my neuro about the SPECT test, and also bring up the flunarazine.  I DO NOT WANT to go back on steroids, tried also using them on a daily basis, it didn't do what it did the first time and I can't tell you what type of PERSON I turned into. I'm stumpted and I'm scared (unknowing).  I'm trying to help myself as much as I can, but I don't know what to look for I am not a doctor and haven't had any schooling (20 years is it now??) for it.  I thank you very much for your time and patience with me, and if you have read this far, I thank you again.
Godspeed,
Kimc
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[CCF-Neuro-M.D.-JT]

I looked in the medical literature regarding your particular symptoms and the questionable diagnosis of HE. ALthough there seems to be more than 13 cases, it is certainly not a common disease. Most patients we see and that are reported in the literature have a change in their cognition/mental status. The only focal neurological deficit that I could find was hemiplegia or loss of strength on one side of the body with or without loss of sensation, but not loss of sensation alone. The lesions on your MRI don't seem to explain the symptoms either. Strokes in the thalamus specifically the left one in your case or the sensory cortex in the parietal lobe (again on the left in your case) or even a very specific spinal cord lesion are the more common causes of hemisensory loss. I'm still reluctant to accept the diagnosis of HE.

I know you've seen many docs and have had an extensive workup, but I think if you continue to have the symptoms (18 mos now) you may need more special imaging techniques such as an MRI of the arteries or even a SPECT scan to evaluate blood flow in your brain. SOmetimes vasculitis can cause focal neurological symptoms and are not picked up by routine MRI studies. This could also respond to steroids.

HE is treated with steroids. The only other medication I saw being used experimentally was flunarazine, a calcium channel blocker used as a neuroprotective agent that they tried in a child with possible HE. You could talk to your doctors about going back on the steroids, but there are lots of side effects as you may well know. Re-explore the cause for your symptoms with your docs or get an opinion from a major medical center such as the CLeveland CLinic before committing yourself to treatments whose risks may outweight the benefits. GOod luck.