Hashimoto Encephalopathy

[Kellygreen]

Has anyone in the group been diagnosed with Hashimoto Encephalopathy? My daughter has Hashimoto and recently had an EEG and they detected she was having myoclonic seizures. I was wondering if treatment for the seizures also helped with Hashimoto symptoms.

[shaws Administrator]

Welcome to our forum and am sorry your daughter has a problem with her thyroid gland, of which 'Hashimoto's is the commonest form of hypothyroidism due to antibodies that attack the thyroid gland until we're hypothyroid.

I had never heard of the condition your daughter has been diagnosed with and apparently it was only 'named' in the 60's.This is an extract from a link which I will give below:-

"This recent case of a 61-year-old man presented with unconsciousness, spasms and a previous misdiagnosis as viral encephalitis. Response to anti-viral and steroid therapy was unsatisfactory, but treatment with immunoglobulin combined with corticosteroid therapy achieved rapid and complete recovery." and

Conclusions:

Any patient presenting with acute or subacute unexplained encephalopathy should be considered Hashimoto’s encephalopathy, even if the thyroid function is normal. Thyroid antibody testing should be performed because this may be the most important clue to diagnosis. As soon as the diagnosis is made, steroid therapy is the first choice. If the steroid therapy does not lead to immediate improvement, IVIG is an effective alternative treatment.

ncbi.nlm.nih.gov/pmc/articl...

I wish your daughter a speedy recovery. It is a worrying time for the whole family.

[Kes8]

My mum was diagnosed with HE in April 2016. It's very very very rare and there is very little info anywhere. She is asymptomatic after high dose steroids and a form of chemotherapy. She has always been euthyroid.

[Kes8 in reply to Kes8]

Just to add her seizures and all symptoms stopped almost instantly when she started high dose steroids which is why the condition is also called Steroid responsive encephalopathy associated with autoimmune thyroiditis.

[Kellygreen in reply to Kes8]

Thank you for your feedback. My daughter has PCOS and hypothyroid (Hashimoto) and we just learned that all her shaking is considered small seizures. I am just considering that she may have HE. She has an appointment today with her neurologist and I am going to mention HE to him. Doesn’t steroids put a lot of weight on? My daughter has the hardest trying not to gain weight and she hardly eats and is constantly exercising. I searched info about medical marijuana for a treatment. When you mentioned you Mom symptoms were better from steroid did it include thinning hair, depression, lethargy and weight gain? Thanks again for your response. ❤️

[helvella Administrator]

Did you find this site:

hesaonline.org/ ?

A few years ago I found a site by a sufferer describing her journey. A quick search just now did not find the site.

[Tinx71]

encephalitis.info/hashimoto...