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    Old 01-28-2004, 08:28 AM   #1
    Hewie
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    Anyone have experience in Hashimoto's Enceplopathy?

    I posted on a couple of other boards but decided to try this one too. I have not seen info on Hashimoto's Encephlopathy and wondered in anyone has any experience or info on it?

    Thanks...

     
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    Old 01-28-2004, 11:16 PM   #2
    AngelicBrat
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    Re: Anyone have experience in Hashimoto's Enceplopathy?

    Hi ya Hewie

    Hashimoto's Encephalopathy is a rare problem where antibodies attack the brain.

    Some of the most common symptoms of Hashimoto's Encephalopathy include: disorientation, psychosis, tremors, concentration and memory problems, jerks in the muscles and lack of coordination, headaches, partial paralysis on the right side, and speech problems. Hashimoto's antibodies levels will be high, and the patient may also have a diagnosable case of Hashiomoto's Thyroiditis, but TSH levels may also be normal. It can often be misdiagnosed. Have you had this?

    The antibodies are increased BIG time usually in Encephalopathy too..

    Hope this helps Hewie!!

    ~Angelic

     
    Old 01-29-2004, 04:38 AM   #3
    Hewie
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    Re: Anyone have experience in Hashimoto's Enceplopathy?

    Quote:
    Originally Posted by AngelicBrat
    Hi ya Hewie

    Hashimoto's Encephalopathy is a rare problem where antibodies attack the brain.

    Some of the most common symptoms of Hashimoto's Encephalopathy include: disorientation, psychosis, tremors, concentration and memory problems, jerks in the muscles and lack of coordination, headaches, partial paralysis on the right side, and speech problems. Hashimoto's antibodies levels will be high, and the patient may also have a diagnosable case of Hashiomoto's Thyroiditis, but TSH levels may also be normal. It can often be misdiagnosed. Have you had this?

    The antibodies are increased BIG time usually in Encephalopathy too..

    Hope this helps Hewie!!

    ~Angelic
    Thanks Angelic... I have not been diagnosed with HE but I am seeing an endriconologist today (and a neurologist). I do have Hashimoto's thyroiditis and have not seen an endo for 5 years and given the symptoms above and I read about, I am concerned about it and am definitely going to ask the doc about it - that and Adrenal dysfunction. I do have an abnormal EEG which corresponds to HE and an abnormal MRI with several white matter brain lesions - some in periventricular matter. I hope...! I get some answers today - or at least on that road. I am miserable most of the time and have no quality of life. I am being tested for Lupus too... guess they must think something's wrong!

    I gotta go - will keep ya posted...

    hewie

     
    Old 01-29-2004, 01:16 PM   #4
    AngelicBrat
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    Re: Anyone have experience in Hashimoto's Enceplopathy?

    Hi Hewie,

    Because of the Hashimoto's which is autoimmune, I would really urge you to get tested for Antiphospholipid Syndrome (if you havent already). Especially because they are testing you for Lupus. The blood tests are the anticardiolipin antibody and the Lupus anticoagulant. The white matter changes and lesions and also the symptoms that you have would go along with APS. That is my gut instinct.

    I read up on Hashimotos Encephalopothy, and usually it happens to people that are not treated for the original problem (which is Hashimoto's thyroiditis). They basically go into a phase where the antibodies switch and attack the brain cells instead. Are you being treated for the thyroid? If you weren't, I would suspect Encephalopathy, but also the lesions I don't think fit with it. Moreso, its inflammation in the brain cells that occurs with this disorder. The white matter changes and lesions would more fit with MS or another lesion related disease process I would think. I will do some more reseach and get back to you on this ok? Take care and hope that your Endo appt goes well. Talk to you soon and please get tested for APS ok!

    ~Luv, Angelic

     
    Old 01-29-2004, 01:24 PM   #5
    AngelicBrat
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    Re: Anyone have experience in Hashimoto's Enceplopathy?

    Hi again,

    in doing some research, I found that HE is a pretty rare thing. Also, it doesn't seem to cause the lesions in the areas of the brain that you have lesions in (in my reading). If you have numbness on one side of the body or other symptoms that would correlate with that area of the brain in HE then I would be VERY suspicious.

    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 in the brain is not picked up by routine MRI studies. This could also respond to steroids if it is HE causing the problems. The lesions concern me because i would relate those more to something like APS rather than HE. I don't know though, HE is extremely rare in people that have the extremely high antibodies due to not being treated. It is worth exploring though! You take care, and if you need anything let me know

    ~Luv, Angelic

     
    Old 01-30-2004, 05:46 AM   #6
    Hewie
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    Re: Anyone have experience in Hashimoto's Enceplopathy?

    Hi again,

    in doing some research, I found that HE is a pretty rare thing. Also, it doesn't seem to cause the lesions in the areas of the brain that you have lesions in (in my reading). If you have numbness on one side of the body or other symptoms that would correlate with that area of the brain in HE then I would be VERY suspicious.

    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 in the brain is not picked up by routine MRI studies. This could also respond to steroids if it is HE causing the problems. The lesions concern me because i would relate those more to something like APS rather than HE. I don't know though, HE is extremely rare in people that have the extremely high antibodies due to not being treated. It is worth exploring though! You take care, and if you need anything let me know

    ~Luv, Angelic


    Hi Angelic -thank you much for taking the time to reply... I was tested for for APS (I think... ) along with an ENA panel last month. I say I think where the APS testing is concerned because the Lab that did that test and the Lupus panel did not do even half the requested tests and I just had blood drawn again yesterday for SSA/SSB and entire ENA panel which I think... again this is a question, includes APS...?

    I'm not sure, I just know I traveled to OSU Medical Center (a top university teaching clinic) again yesterday. I saw the endrocrinologist and the neurologist (to rule in or out demylenating disease such as MS..) and... I am just plain worn out with doctors - I want to crawl in a hold and die... If my quality of life has to stay the way it is now and doctors continue to either subtlely or outright insinuate I'm a neurotic idiotic - or just don't care enough to try a bit harder (which is what we pay them for!) or just look at tests and say "tests look ok" (so you must be ok... ) after you've very directly and strongly reiterated that you feel like you are slowly dying and your child is right there with you to affirm that they too have seen these symptoms in you and you did not use to be like this...... THEN... it just doesn't seem worth it. I sincerely am wondering what the "h... e...double hockey sticks!" is wrong with the medical care (at least it's supposed to be care...huh..) in this country. I've read so many posts on boards and it seems to be primarily in the good ole USA that folks simply waste their time and money on doctors - even those who are supposed to be the best in their field. I guess I need to do something to pass out right in their office to get them to LISTEN! They hear only what they want to...

    I am upset because the endrocinologist said, "You know that Hashimoto's Encephlalopathy is just a ficticious disease and is not recognized by blah, blah, blah... They have found nothing to stand on to even suggest it exists..!
    By the way... I do have and have had my whole left side of my head go numb and my left arm- there is always some residue of that but it gets stronger at times.
    I said in my research, that's not what I've read. I read about places like Baylor U, Cornell U, Harvard, Universities in Italy, France, UK and others that are now finding that HE is not only a legitimate disease - it has probably been underdiagnosed as so many diseases are until it is established that they actually do exist! Case in point - Chronic Fatigue Syndrome - women used to be considered neurotic and mental and CFS was considered a "fictitious" catch all for these women. NOw they can verify it via a simple blood test that shows the Epstein Barr virus.

    He did not even want to order a test for Adrenal function on me (I feel just needs to be checked due to 6 surgies last year which really takes it toll on a body!) but he acquiesced and ordered a TSH level (no T3 or T4 - said I don't need those - again not what I've researched over and over). THen I went to get the necessary prescription for the adrenal functioning test and they said Medicaid would not cover it - $105. I would NOT be on Medicaid if I could afford that! SO they said to go check with the doc if he would authorize it and then they could go ahead anyway... He said no... I didn't need it.... so basically, I feel my time and gas money and parking money and energy were wasted on this appt. I just got a TSH level from my PCP - I'm not bothering with this jerk again... I did ask him about a possible encephlolapathy and he said that's the neurologist's field - tho I read that Hashimoto's E is and endrocine disorder....the neurologist said that is an endrocine disorder...! aye, yi, yi..! I'm going to quit reading... I'm tired of being better versed in a field than a "supposed" specialist.

    My appt. with the neurologist fared better. I wasn't totally satisfied as I told her my home town neurologist sent me there (OSU) to get tested for demylinating disease. Well, she and her apprentice did a half thorough exam (I've had better!) and then looked at my list of symptoms(long - I typed them all out) and said there is no one neurological disorder that would cause all the symptoms to which I said, I'm sure but I listed them all anyway. She said there was nothing that stood out in my exam 9funny - 3 previous neurologists listed several abnormalities??) BUT! she did say that it had been 6 mo nths and it would be good to have another MRI to just check the status of the white matter lesions found 6 months ago to see if any change, etc. SHe did say, the one thing she could think of that would cause this numerous of symptoms would be MS but she did not in any way imply that she thought this. I would argue this point with her but it would be to no avail I'm sure. I've read that white matter brain lesions are quite common in SLE too and in fact are VERY difficult to distinguish from MS or Ischemic or Vasculitic lesions.

    Whatever! at least she did order another MRI (I get Feb 17th) and I then asked her what about doing another EEG also as it'd been 6 mos. for that too. SHe said that the abnormalitles listed on my report could sometimes be nothing but "might as well do another EEG too." The person who did my EEG 6 mos. ago listed it as moderately abnormal and indicative of diffuse cerebral dysfunction... I DON'T THINK THATS SOMETHING TO HAVE A FLIPPANT "WHATEVER" ATTITUDE ABOUT...! SOMETIMES normal is not good enough for me...It's my brain...! What about the people who it is not Sometimes Normal in...??? Again... aye, yi, yi...

    Bottom line - I'm glad I saw this neurologist (tho I definitely would not recommend her as the best - she did order a CSF test too but brushed aside the VEP, SSEP, and BAER tests my home neuro asked for), and I'm glad I pushed a bit to get tests tho the HE and adrenal functioning tests, did not work out. THo I have so little strength left that I don't know if I can take much more of these supposed "specialists" doctors around here. My pcp is more caring but his hands are tied if the specialist to whom he sends me are not..! I am tired of telling docs I feel like I'm losing consciousness at times, I HAVE PERMANENT AREAS OF NUMBNESS IN MY LEFT SIDE LIPS AND CHIN.. That's great to have your mouth go numb.... I cannot feel my fingertips, back of hands, lower legs often either. I cut myself and notice it only when the wet blood slides on something. And I am beginning to wonder if I have Alzheimers -told her that. told her extensiveness of my memory problems (and they are strong and increassing) but she did not respond as to whether that is a possiblity or not... if nothing sticks out as particularly concerning on these tests, then she'll see me back in May...!??? Ok... I just may be a babbling idiot by then and in a nursing home for the senile!

    OK... I"ve been on a long soap box... I don't know that it is worth asking docs to do anything else -- they just plain don't care... the medical profession at least in this country, has become much of a sham and they've lost side of the Hippocratic oath.

     
    Old 01-30-2004, 08:33 AM   #7
    Hewie
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    Join Date: Nov 2003
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    Re: Anyone have experience in Hashimoto's Enceplopathy?

    Quote:
    Originally Posted by Hewie
    Hi again,

    in doing some research, I found that HE is a pretty rare thing. Also, it doesn't seem to cause the lesions in the areas of the brain that you have lesions in (in my reading). If you have numbness on one side of the body or other symptoms that would correlate with that area of the brain in HE then I would be VERY suspicious.

    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 in the brain is not picked up by routine MRI studies. This could also respond to steroids if it is HE causing the problems. The lesions concern me because i would relate those more to something like APS rather than HE. I don't know though, HE is extremely rare in people that have the extremely high antibodies due to not being treated. It is worth exploring though! You take care, and if you need anything let me know

    ~Luv, Angelic


    Hi Angelic -thank you much for taking the time to reply... I was tested for for APS (I think... ) along with an ENA panel last month. I say I think where the APS testing is concerned because the Lab that did that test and the Lupus panel did not do even half the requested tests and I just had blood drawn again yesterday for SSA/SSB and entire ENA panel which I think... again this is a question, includes APS...?

    I'm not sure, I just know I traveled to OSU Medical Center (a top university teaching clinic) again yesterday. I saw the endrocrinologist and the neurologist (to rule in or out demylenating disease such as MS..) and... I am just plain worn out with doctors - I want to crawl in a hold and die... If my quality of life has to stay the way it is now and doctors continue to either subtlely or outright insinuate I'm a neurotic idiotic - or just don't care enough to try a bit harder (which is what we pay them for!) or just look at tests and say "tests look ok" (so you must be ok... ) after you've very directly and strongly reiterated that you feel like you are slowly dying and your child is right there with you to affirm that they too have seen these symptoms in you and you did not use to be like this...... THEN... it just doesn't seem worth it. I sincerely am wondering what the "h... e...double hockey sticks!" is wrong with the medical care (at least it's supposed to be care...huh..) in this country. I've read so many posts on boards and it seems to be primarily in the good ole USA that folks simply waste their time and money on doctors - even those who are supposed to be the best in their field. I guess I need to do something to pass out right in their office to get them to LISTEN! They hear only what they want to...

    I am upset because the endrocinologist said, "You know that Hashimoto's Encephlalopathy is just a ficticious disease and is not recognized by blah, blah, blah... They have found nothing to stand on to even suggest it exists..!
    By the way... I do have and have had my whole left side of my head go numb and my left arm- there is always some residue of that but it gets stronger at times.
    I said in my research, that's not what I've read. I read about places like Baylor U, Cornell U, Harvard, Universities in Italy, France, UK and others that are now finding that HE is not only a legitimate disease - it has probably been underdiagnosed as so many diseases are until it is established that they actually do exist! Case in point - Chronic Fatigue Syndrome - women used to be considered neurotic and mental and CFS was considered a "fictitious" catch all for these women. NOw they can verify it via a simple blood test that shows the Epstein Barr virus.

    He did not even want to order a test for Adrenal function on me (I feel just needs to be checked due to 6 surgies last year which really takes it toll on a body!) but he acquiesced and ordered a TSH level (no T3 or T4 - said I don't need those - again not what I've researched over and over). THen I went to get the necessary prescription for the adrenal functioning test and they said Medicaid would not cover it - $105. I would NOT be on Medicaid if I could afford that! SO they said to go check with the doc if he would authorize it and then they could go ahead anyway... He said no... I didn't need it.... so basically, I feel my time and gas money and parking money and energy were wasted on this appt. I just got a TSH level from my PCP - I'm not bothering with this jerk again... I did ask him about a possible encephlolapathy and he said that's the neurologist's field - tho I read that Hashimoto's E is and endrocine disorder....the neurologist said that is an endrocine disorder...! aye, yi, yi..! I'm going to quit reading... I'm tired of being better versed in a field than a "supposed" specialist.

    My appt. with the neurologist fared better. I wasn't totally satisfied as I told her my home town neurologist sent me there (OSU) to get tested for demylinating disease. Well, she and her apprentice did a half thorough exam (I've had better!) and then looked at my list of symptoms(long - I typed them all out) and said there is no one neurological disorder that would cause all the symptoms to which I said, I'm sure but I listed them all anyway. She said there was nothing that stood out in my exam 9funny - 3 previous neurologists listed several abnormalities??) BUT! she did say that it had been 6 mo nths and it would be good to have another MRI to just check the status of the white matter lesions found 6 months ago to see if any change, etc. SHe did say, the one thing she could think of that would cause this numerous of symptoms would be MS but she did not in any way imply that she thought this. I would argue this point with her but it would be to no avail I'm sure. I've read that white matter brain lesions are quite common in SLE too and in fact are VERY difficult to distinguish from MS or Ischemic or Vasculitic lesions.

    Whatever! at least she did order another MRI (I get Feb 17th) and I then asked her what about doing another EEG also as it'd been 6 mos. for that too. SHe said that the abnormalitles listed on my report could sometimes be nothing but "might as well do another EEG too." The person who did my EEG 6 mos. ago listed it as moderately abnormal and indicative of diffuse cerebral dysfunction... I DON'T THINK THATS SOMETHING TO HAVE A FLIPPANT "WHATEVER" ATTITUDE ABOUT...! SOMETIMES normal is not good enough for me...It's my brain...! What about the people who it is not Sometimes Normal in...??? Again... aye, yi, yi...

    Bottom line - I'm glad I saw this neurologist (tho I definitely would not recommend her as the best - she did order a CSF test too but brushed aside the VEP, SSEP, and BAER tests my home neuro asked for), and I'm glad I pushed a bit to get tests tho the HE and adrenal functioning tests, did not work out. THo I have so little strength left that I don't know if I can take much more of these supposed "specialists" doctors around here. My pcp is more caring but his hands are tied if the specialist to whom he sends me are not..! I am tired of telling docs I feel like I'm losing consciousness at times, I HAVE PERMANENT AREAS OF NUMBNESS IN MY LEFT SIDE LIPS AND CHIN.. That's great to have your mouth go numb.... I cannot feel my fingertips, back of hands, lower legs often either. I cut myself and notice it only when the wet blood slides on something. And I am beginning to wonder if I have Alzheimers -told her that. told her extensiveness of my memory problems (and they are strong and increassing) but she did not respond as to whether that is a possiblity or not... if nothing sticks out as particularly concerning on these tests, then she'll see me back in May...!??? Ok... I just may be a babbling idiot by then and in a nursing home for the senile!

    OK... I"ve been on a long soap box... I don't know that it is worth asking docs to do anything else -- they just plain don't care... the medical profession at least in this country, has become much of a sham and they've lost side of the Hippocratic oath.
    PS. In rereading my EEG from July '03 - it also gave a differential of a diffuse encephlalopathy... Oh well.... it's only my brain involved...

    Despite referrals and the results of all last year's tests, these docs had the nerve to act like I was wasting their time and were definitely just so, so about my being there (like I'd be traveling and seeing a specialist for no good reason)... Now I feel even if they actually do find something (something they consider worthwhile regardless of so many others in their field) they probably will not take a preventive approach in treating it. Like I said - you have to collapse in front of them in this country and then they'd probably dismiss it. You pretty much have to have a family member get angry and persistently firm with them to move them out of their complacency. Most docs in this country get paid way.... too much.! It's sad... and I'm angry. Being angry is the only time I have any energy - it gets my adrenlin going for awhile..

    Hewie

     
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