I'm seeking for any advice on Hashimoto encephalopathy.
My mother had Hashimoto thyroiditis for a long time and it was not treated. Her nails got very yellow and thick and hair were thinning. In May in a period of 2-3 days she developed neurological symptoms, right sided hemi paresis, confusion, 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 test 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 and stayed symptoms free for 2 months. In August the same set of neurological symptoms occurred - gait issues, right sided hemi paresis, confusion, delirious-like state, extreme rigidity and then myoclonic convulsions. Her TSH is 23 now and TPO is 386, 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 very clouded.
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, Levothiroxin alone will not help. But last week she was discharged from hospital and steroid treatment was not prescribed.
I'm looking for any advise on the HE, please, help! Did anyone had it steroid pulse therapy?
How do I talk doctors into considering this option for my mom?
I don't really have personal experience with HE. I did(still do) suspect it in a cousin of mine. (And possibly a couple of other family members.) I printed out a whole lot of stuff and gave it to him. He showed his dr and was basically told he had way too much time on his hands. He never even showed it to his neurologist. Sigh. So sad because I could see the symptoms mirrored in him and evident for over ten years now. The only grace is the dr does put him on steroids from time to time. But probably not enough to truly do some good.
Anyway, I would research and collect info. Then start hounding the drs til they take you seriously. If you really suspect HE, don't give in. Keep at them til they listen. I have found this to be the only way to get thru to drs that won't listen initially.
I have also read recently that if you treat a drs appt like a job interview or other important meeting you'll be taken more seriously. Example, dress sharper, posture, attitude, etc. I did this on the last dr visit I went to....this dr usually talked in a slightly demeaning way and seemed to rush the visit (whether he was aware of it or not). Instead of my usual jeans and faded t-shirt, I wore a nicer shirt with my jeans....instead of sitting back comfortably, I tried to sit up straight while I leaned back....and I tried to speak my thoughts sharper and more clearly like I was talking about a business matter. WOW! He actually responded in a more positive way (again, whether he realized it or not.) It was a much more productive visit that ones in the past.
Hope that helps you some. Best wishes for you and your mom,
I strongly urge you not to let go of your suspicion that HE may be your mother's problem. It is a very rare condition. I've never seen a case of it in my time on this board; but the noted patient advocate Beverly Seminara, who had to fight for her HE diagnosis, says that it is probably frequently misdiagnosed. I think she had originally been diagnosed with Alzheimer's disease. She says that if HE remains untreated, the resulting dementia may become irreversible, but that if proper steroid treatment is instituted, it's a completely managable disease in the long term. You and your mother can't afford not to broach the subject with her doctors.
I would approach the neurologist and say in a polite but firm way, "If the possibility of Hashimoto's encephalopathy has not yet been explored, my mother and I would like that to be your next step." If you get any argument, don't back down. Be ready with a polite but informed response for each possible objection. For example, you may get the "It's very rare" argument; say that you know it's rare, but that doesn't mean that no one gets it, and your mother may be one of the rare ones who has.
I think you're onto something. Go with your intuition. I hope you'll let us know what happens.
I've read everything on Beverly's site and my mom also was initially diagnosed with Alzheimer, but after she returned to her normal stage, Alzheimer and other dementias of senile type(Lewy body) were ruled out, as they are not reversible and have no acute beginning.
What I could not find on Beverly's site is who's area of expertise this decease would fall into - is Endocrinologist would be the one to prescribe steroids or neurologist, or physician? In my Mom's they are sending us from one to another without resolution and without any diagnose.
I will post my update on situation here,
Since the garden-variety endo knows more about diabetes than anything else, I would go to the best neurologist I could find. I would try to save time by asking the office nurse of any potential candidate if that MD has diagnosed or treated any cases of HE, or asking for names of any MDs with more expertise they might know. A teaching facility might be your best bet.
Best of luck! Will be waiting to hear what happens.