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EndoQuest
10-05-2007, 03:36 PM
I'm looking for any advise on HE situation, I think my mother has this decease.

My mother (66 years old) had Hashimoto thyroiditis for a long time and it was not diagnosed or treated. Her nails got very yellow and thick and hair were thinning. She was loosing weight and getting more and more tired, but was able to work as a dentist, her mental state was absolutely normal.

But in May in a period of 2-3 days she developed neurological symptoms: right sided hemi paresis, confusion, aphasia, tremor, myoclonus, limbs twitching and rigidity that were progressing. Her TSH at a time was 18 and TPO 380. Doctors could not come up with a diagnose, all tests were fine(MRI, EEG, spinal, virus and toxicity tests) and by the end of the month she got into stupor, had myoclonic seizures and then was in coma for 2 days. In reanimation she regained complete consciousness, was absolute adequate, normal and stayed symptoms free for 2 months. In August the same set of neurological symptoms occurred - gait unsteadiness, right sided hemi paresis, confusion, delirious-like state, extreme rigidity and then myoclonic convulsions. Her TSH is 23 now and TPO is 647, she was put on Syntroid(88mg) and was getting better physically for past week and a half, she can walk, talk, eat. However, her thinking is still very clouded, she's disoriented and have difficulty expressing herself, she has no short term memory at all.

Neurologist and psychiatrist are saying that this is due to hypothyroid, but endocrinologist says that mom's TSH is not high enough for mexedema delirium(plus, mom has no swelling or goutier, she actually lost a lot of weight).
But I was doing a lot of reading on what can cause her relapsing condition and Hashimoto Encephalopathy came up - mom's symptoms look very much like HE. In this case, as I understand, Levothiroxin alone will not help. But last week she was discharged from hospital and IV steroid treatment was not prescribed. Now endocrynologist saying that she might consider oral steroid treatment with high doses of Prednisone for my Mom, but all case studies on HE I've read mention IV pulse steroid theraphy as a choice of treatment, they state remarcble response occure in 1-3 days in case ir this is really HE.
Did anyone improve on oral steroids, did it help?

I'm looking for any advise on the HE, please, help! How do I talk doctors into considering probability of HE for my mom?


Thank you!

EndoQuest
10-31-2007, 10:01 AM
Thank you,
My mom's neurological symptoms were cleared in a matter of 2 days after starting IV steroids therapy at hospital. She had 1 g of Solumedrol for 5 days and then was put on oral Prednisolone(started with 80 mg and decreased to 20 in 2 weeks). Ten days after start of steroid treatment she was back to normal mental status, she may have some forgetfulness sometimes, but she's absolutely normal. She can walk, cook, solve crosswords puzzles, sudoku, etc. This is unbelievable that doctors still question this disease! I think this is a classic case of steroid responsive encephalopathy with high TPO levels. Mom's doctors never heard about this disease before I gave them printed copies of health studies on HE, but were willing to try steroid IV therapy when she was hospitalized last time. It saved her life and brought her back to normal mental status!
Dear I know how hard it is to find a right doctor(who's not overly skeptical and can listen) and who can find a correct diagnosis and administer right treatment. Thank you for your warm words and I wish you complete recovery and zero of relapses!

julia jazz
05-06-2008, 08:46 PM
Hi
My daughter who is 12 has just been diagnosed with HE, she has been on the steroids for around 3-4 weeks they have started to lower her dosage but she is not really any better. I was just wondering how long until she starts to show signs of improvement.
This is very upsetting for me and hard for me to watch.
She has been off school since the start of Feb.
She was such an active and happy girl, but now she has so much pain some days she can hardly move.
We are in London and the Drs are great but I still feel that there must be more they can do.
Please help there is such little support for HE

nette31
08-11-2009, 04:54 PM
Hi everyone,

My little boy (who is 11) was diagnose with HE in April. He is still having problems with some things. We recently had to go back in the hospital for treatment. I am just confused at what is going on with my child. If anyone can help me with any of this or just for support please let me know. Thanks.