Though this post first came up in 2010, it has been updated to the present day and time.
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I got an email from a sweet thyroid friend and advocate, Bev, aka Thyro-butterfly, whom I’ve known for several years. And Bev has had two relapsing and unnerving bouts with a condition that’s not common, and under-diagnosed: Hashimoto’s Encephalopathy (HE).
She stated “I think everyone who has Hashimoto’s disease should know that this exists because the symptoms are so similar to severe neurological problems. And the treatment, though not curable, is relatively easy to do….”
What is Hashimoto’s Encephalopathy (HE)?
Hashimoto’s Encephalopathy is a rare neuroendocrine disorder which was termed and recognized in 1966 and has a strong connection to the autoimmune thyroid disease called Hashimotos–a form of Thyroiditis. i.e. just as antibodies attack your thyroid, there are rare cases where it can attack and destroy your brain cells. Having a high thyroid peroxidase (TPO) antibodies lab result is common with Hashimoto’s Encephalopathy, and can accompany high anti-thyroglobulin antibodies, as well.
Researchers have also coined other names for this condition:
- Steroid Responsive Encephalopathy Associated with Thyroiditis (SREAT)
- Encephalopathy Associated with Autoimmune Thyroid Disease (EAATD)
- Non-vasculitic Autoimmune Inflammatory Meningoencephalitis (NAIM)
- Autoimmune Encephalopathy (AE)
The U.S. National Institutes of Health’s Office of Rare Diseases Research refers to it as Hashimoto’s Encephalitis.
Wikipedia states:
Up to 2005 there were almost 200 published case reports of this disease. Between 1990 and 2000, 43 cases were published. Since that time, research has expanded and numerous cases are being reported by scientists around the world, suggesting that this rare condition is likely to have been significantly undiagnosed in the past. Over 100 scientific articles on Hashimoto’s Encephalopathy were published between 2000 and 2013.[2]
What are symptoms that can make one suspicious of having HE?
Those with HE can share many symptoms, or can have unique symptoms from each other. They include:
- tremors
- seizures
- jerking
- language difficulty, whether speaking, writing or reading
- confusion
- limited attention span or concentration
- poor memory and retention
- dementia diagnosis
- disorientation
- restlessness
- convulsions
- symptoms similar to a stroke
- poor coordination (walking, fingers, hands, etc)
- partial right-sided paralysis
- headaches
- fatigue
- sleep problems
- psychosis
- coma
Women are more prone to HE than men.
What tests might my doctor do to confirm this?
Studies underscore the need to first exclude “other toxic, metabolic and infectious causes of encephalopathy (disorder of the brain) with neuro-imaging and CSF examination”. The latter is examining one’s cerebrospinal fluid. But when there are quite high levels of antithyroid antibodies like TPO (thyroid peroxidase), that alone can be a strong enough clue to diagnose Hashimoto’s Encephalopathy. High TPO antibodies can accompany high levels of thyroglobulin antibodies, as well.
What kind of doctor might help me the most?
Many of the published articles on HE have been done by Neurologists from the Mayo Clinic. If you live in Arizona, Florida or Minnesota, here’s a list of Neurologists associated with Mayo: http://www.mayoclinic.org/departments-centers/neurology/sections/doctors/drc-20117077
Here’s a list of Neurologists by states in the US: http://www.healthgrades.com/neurology-directory
Around the world, you can click on the area you live, then see a list of Neurologists: http://www.wfneurology.org/member-societies
How is HE treated?
Luckily, treatment is fairly straightforward and dramatic against symptoms: steroid use, which is why it’s also termed “steroid-responsive encephalopathy associated with autoimmune thyroiditis (SREAT)”.
Says Elaine Moore in her article titled Hashimotos encephalopathy: A Treatable Form of Dementia:
Patients with SREAT show a good response to corticosteroids such as prednisone and related immunosuppressants because of the ability of these medications to reduce thyroid antibody production and reduce inflammation. Researchers in India report a case of SREAT that did not respond to corticosteroids but showed a very favorable response to plasma exchange, a technique used to remove circulating antibodies.” Doses of steroid can vary from individual to individual, but some do well on 4-6 mg cortisol for a few days. Others may need more. Remission is the norm for most. You’ll have to watch for relapses. Since misdiagnosis is common, it’s important to talk to your doctor about this potential disorder, testing, and treatment if you have Hashi’s and symptoms similar to any of the above.
Wiki also states: Initial treatment is usually with oral prednisone (50—150 mg/day) or high dose IV methylprednisolone (1 g/day) for 3—7 days.
Thanks to Bev for bringing this issue back up.
Important notes: All the information on this website is copyrighted. STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
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71 Responses to “If you have Hashimoto’s, you may want to become aware of Hashimoto’s Encephalopathy”
Anita
Please for those still having HE symptoms, please just go to a Mayo Clinic specialist who has published medical articles/studies on HE. As stated in the Author’s article above, “Many of the published articles on HE have been done by Neurologists from the Mayo Clinic.” Don’t disqualify yourself from seeing a Mayo Neurologist just because you don’t live in Arizona, Florida or Minnesota. Do whatever you can to get to where a Mayo Clinic Neurologist is. Get your job transferred, move to a Mayo area temporarily, look into family/friends who live in a Mayo area and would be willing to let you stay with them until you get HE issues properly diagnosed by a Mayo Neuro, rent an RV for a spell and reside where Mayo is, etc. Get creative with how to get to where these specialist are. Otherwise you’re going to just continue wasting your health, your time and your life seeing unhelpful endocrinologists and other type doctors in your non-Mayo area. Lastly, I can’t help but wonder if all this thyroid crap we all go through is largely happening in the U.S. and other nations where chem trails are photographed/studied? I can’t help but suspect chem trails as a culprit to all of our increasing numbers of thyroid cases, cancers, fertility issues, etc. Has anyone else ever wondered the same thing? God bless and get healthy in Jesus’ Name
Giamarie
Hi. I was diagnosed with Hashimoto Encephalopathy last month. I have just completed 3 days of steroid treatments as an outpatient in the infusion center at Renown Hospital in Reno, Nevada. I do not know how well it worked yet but, has anyone else done this? I was given 1000mg of Solumedrol a day for 3 days consecutively. By the last day I was so nauseous that I still have to take a lot of zofran to get through the day and its been one week yesterday since my last treatment. I guess I am just reaching out to talk to other people who are sick and see if anyone has something to share about it. I also have other medical issues like fibromyalgia, severe daily cronic migraines, blood clots in each of my lungs that started in my legs so I am also on Coumadin and have to go to the clinic for weekly blood tests and seizures have now been added to my growing list of ailments. I have only been 44 years old for 2 months today exactly (August 15th) I am a mess and I feel like I am falling apart. Sorry for all this. I guess I needed to vent and cry some more. Thank you in advance for reading all this. Giamarie
Little My
Giamarie,
This is a late response – a year later – and I hope you have found medical help that makes life a little easier for you. You are definitely not the only one. My daughter has been struggling with HE for the last two years. Really high amounts of steroids help, but then there are major side effects, so what then? The rest of the time it’s brain fog, severe depression, sleep problems, some delusions, fatigue, memory problems, pain, and general inability to function. She is 15 and was happy, ambitious, and capable before this all hit. We keep reading everything we can, trying to find the right treatment and pushing medical care providers for help. Don’t give up – the more people who deal with this, the more will be discovered and help will come.
RM
There’s different types and severity of HE. one type is more bipolar and psychosis type symptoms, the other is more cognitive decline like dementia type symptoms. Some people like me do not get seizures. I get muscle twitching, and I have stroke like episodes, confusion, inattention, mood swings, irritability, brain fog, muscle weakness, night time episodes that are seizure like, and EEG was clear. Not everybody is the same and this is the case with autoimmune brain diseaes. My childen have a different brain disease that is autoimmune called PANS, also known as Autoimmune Mediated Encephalopathy. My oldest one gets psychotic symptoms and rage, loss of skills, cognitive decline at times, slurred speech, confusion, movement disorder, muscle weakness, sleep disorder, anxiety, OCD and vocal and motor tics. My younger son has aggressive behaviors, ADHD, decline in school abilities, OCD, minor sleep issues, mood swings and fatigue. No movement disorders or extreme confusion or drunken behavior like the older one. More severe cases will cause more severity and wider range of symptoms. It’s important to know that not everyone just presents like dementia and seizures.
Dd
I have struggled with various viruses and parasites for the past 5 monnths, and have just been diagnosed with HE – I have the exact same symptoms as you… they are not all consistent though – they come and go, and I haven’t had a night time stroke like episode in a while (but have been taking sleeping tablets at the hospital so maybe that helps?) I am on my second day of prednisone – hoping it helps me ASAP!!!
Have you recovered yet, if so, how has the road to recovery been and what has helped you?
Angela
What would be considered a “high” TPO?
Janie Bowthorpe
Not sure what you mean. But Hashi’s is usually there if it’s above range.
Brenda
Ciara, we also love in Canada and my husband has most definitely been diagnosed with Hashimotos Encephilopathy. Our specialists say it is rare but there are certainly more cases in Canada!
Ciara
I have Hashimoto’s Encephalopathy. im the only person in Canada with it and there’s only 22 in all of North America. i have had it for just about 12 years now. what happened was i was walking in Walmart with my mom cause she was going to buy me a new outfit for school and all of a sudden i collapsed and went into a seizure then a grand mal seizure then into a coma. i got rushed to the hospital and then flown down to BC’s Children’s Hospital. the doctors did millions of tests on me to get me out of my coma. after being in 1 for 20 day i finally got out of it cause of 2 doctors suggesting so tests to try on me. when i got out i was having 16 seizures a day and was blind. no one knew i was blind cause i was just acting like any kid. after a week my mom asked me if i knew where i was, if i knew who she was, and if i could see her and all my answers were ” no “. the doctors did millions of more tests on me, and now i can see but not very good. i got 2 brain operations, my 1s brain operation in 2009 and my 2nd in 2010 and they were both for cutting off my left tempera lobe. the doctors didn’t have to do them, but they said it might stop my seizures both times, and i told them to just do it cause in the future it might help out another kid. my 16 seizures a day have gone down to 1 every 10-15 days, but if i have 1 that is over 4 minutes i could go back into a coma. also i have long and short term memory loss, from my pills and brain operations, i get fainting spells where i just collapse all of a sudden, hiccup attacks, burp attack, sneeze attack, and laugh attacks, a head ache 24/7, i take 15-20 pills a day and can’t fall asleep until between 12:00 am – 3:00 am. im saying all this because i just want to ask people to PLEASE donate some money to BC’s Children’s Hospital. they saved my life and if you donate some money, even a dollar, you could help out another child and maybe even save their life. so PLEASE donate some money, believe me you will feel GREAT after doing that! thank you for reading this. Cowgirl, Ciara 🙂
Bianca
Hi guys.. Im a hashimoto pasient and been feeling off lately… But feels like my “sick” feeling is getting worse, i cant exactly remember when i was diagnosed with hashimoto’s hypothyroidism. I think it was between 2010 -2012 , after my pregnancy i gaind alot of weight again and it felt like my medication wasn’t working again, but went to the dr and he just said keep drinking the same as i use to… My litle one is 9mths old now and ive been experiencing new symptom’s like numbness/no feeling of my big toes dizzyness heavy head/fogginess slow speech at night pain of stepping on my feet after resting/sleeping my eyes are extra sensitive , i get dizzy/light headed when i look up (hanging laundry) even if i just walk a bit fast i get dizzy and fatigued.. Short temperd and the list goes on, just curious to what you might think? Going to the doc bit later on 🙂
Kelly Garner
Oh GOD thks for your help love Kelly
Kelly Garner
Please help I have hoshomotos disorder I feel like I am dying brain fog memory loss weight gain no appepitite please help Im dying
Janie Bowthorpe
Kelly, for what it’s worth, I’ve never known of anyone to die from Hashimoto’s, but it sounds like you need to work with a good doctor: https://stopthethyroidmadness.com/how-to-find-a-good-doc Plus it would help you to learn from patients: http://www.laughinggrapepublishing.com
Mick Kulin
For those of you thinking you have HE. Let me tell you the real symptoms. My wife’s TPO is 15,000. She has dementia, needs prompting for bathing, cannot find most words, writing is out of the question although she can still read, cant figure out what door to go in. If you even found this web site, wrote a post and are having discussions you probably don’t have HE. It is not an inconvenience, it is completely debilitating. Not to mention the grand mal type seizures not the little ones. BTW steroids didnt help her and most insurance companies will not pay for plasma exchange or IVIG. I just dont want you chasing something down a rabbit hole. There are many reasons why you are probably not feeling well good luck.
Angie
Mick-how long was your wife having symptoms, especially the seizures, before she started steroid therapy?
Angie
Mick,
I am so sorry to hear about your wife’s symptoms. I hope that there will just be some peace and comfort for you and your family
Mick
Update 3 courses IVIG no help. Plasma Exchange only option left.
Liz
Hi Mick. Any update?
Jane Carlson
I have Hashimoto. My TPO started at over 6900 and I have reduced it to 5000 over the past 3 months. I have what I call seizures, but I ‘m not sure they are. I have them while sleeping and wake up with every muscle tight and aching. This has happened a few times – my daughters seizure dog alerted me the first two times and woke me up. I also have low temp, sleep problems, dizzy, vision problems, panic attacks, anxiety ,confusion at times finding the correct word to use. I am on Naturethroid and I am gluten free. Do these sound like signs of HE? The nighttime seizure like activity is the worse for me – followed by the dizziness. Comments?
Jenny Otto
Hi! I have had HypoThyroid since 2002 at 36. I got diagnosed with Hashimotos in 2011 at 47. Each yr from Aug thru Oct. I begin to have severe symptoms. Headaches, migraines, fatigue, heat intolerance, brain fog, short term memory problems, heart racing, palpitations. Then the anxiety and panic start. Each year I have had first high Tsh 7-10. Then fluctuate to hyper. This yr. my first check was -0.36 and FT4 1.88. I am having palpitations, panic attacks, brain fog and fatigue. My first TPO levels were 376 back in 2011. She (endocrin) changed my levothyroxine from .137mcg 7 days wk to .137mcg 6 days wk and 1/2 tablet the 7th day. Due back in 3months. Should I mention HE and ask to have my TPO level checked.
Erika
I am in DESPERATE need of help. I have been having HE symptoms since April of this year. It has been very traumatizing for me and my family. I actually have a very good endo. However, I feel that HE is what is wrong. I was dx with Hashimoto’s around 11 years ago (by the way, I’m 33 years old). I have been through so much lab work, CT’s, MRI’s, EEG’s, etc and everything seems to come back ok. Then, I found this endo that I see now. He did more labs (that the other dr’s hadn’t done) and when I went and got the results last week, the NP said that my antibody levels weren’t high enough to dx HE. She said that in order to dx HE, my levels would have to be in the 1000’s. And she said mine were only in the 100’s. So, I asked her. I haven’t had any severe symptoms in a couple of months. Could my antibody levels have gone down? I told her that I had read a little on HE and I read that it goes into remission. So, when it goes into remission, do your antibody levels go down too? She couldn’t answer that. And the actual doctor wasn’t in the office so I couldn’t get an answer. I go see my neurologist in a week or so and I’m going to talk to him about HE some and see what he says bc this is getting really difficult. But I was wondering if anyone on here maybe could answer this for me?
Janie Bowthorpe
Hi Erika. It’s true that HE usually manifests itself with high antibodies, but it’s also stated that the symptoms wax and wane, implying the antibodies can, too. Hopefully someone else will respond here, too. I believe there’s an HE group on Facebook, as well.
Tanya Hansen
Erica, your endo doc is mis informed about the levels being in the 1000’s to be HE. Please join the Hashimoto’s Encephalopathy Facebook group to get more answers. HE is mainly diagnosed by elimination of other disease and there isn’t a blood test that says, “This is HE!” I would also recommend going on Amazon and getting the HE book, “Understanding Hashimoto’s Encephalopathy.” My husband Michael has HE and his story, along with several others, are in the book.
Ciara
look what i said on here about myself, read all of it. if you have those symptoms then you might have Hashimoto’s Encephalopathy. also if you go on http://www.youtube.com and type in Jaydee Bixby and Ciara Walls and watch the video it might help you a bit to. good luck with everything, Cowgirl, Ciara 🙂 P.S. i am now 23 so i know a LOT about this disease i have cause i have been threw a LOT, more than what i wrote!
himanshu
My father is diagnosed with HE but his antibodies was 495 in one year treatment 95 units come down but he has withdrawing behaviour.I am in India if u know any grt doctor for this disease so plz let me know .Thanku
Danny
There is a very knowledgeable helpful group on facebook I’d recommend — search for “Understanding Hashimoto’s encephalopathy (HE)
Mary W
Yes. I would also recommend the book, Understanding Hashimoto’s Encephalopathy. There’s a review of the medical literature, a chapter describing the disorder, and many first person accounts. Unfortunately, there are none from people with Down Syndrome. It’s available for the kindle, too.
Mary Wrenn
My 35 year old daughter with Down Syndrome was diagnosed with HE in May after a seizure and stroke-like symptoms that worsened over two days. Before she started prednisone she started recovering, but her recovery has been limited. She is still confused, especially at night. She is unable to walk and has a left-sided stiffness and weakness in her legs that is confusing to the neurologists. She has some visual perceptual motor problems, though that has shown improvement. She complains that her legs are asleep. She complains of dizziness when she stands. Therapists attribute her poor progress to behavioral issues, which could be, but we wonder how much might be neurological. She walked normally before this. Prednisone is now being tapered. I have read the study of two people with Down Syndrome and HE, but details about recovery were scant. I wish I had more of an idea of prognosis. This is a major life change for my daughter. Are there any others out there with similar situations?
Brittany
I have read through all the comments regarding HE. I have been diagnosed with hypothyroidism since 2009 and been on synthroid ever since. After my third baby in 2013 I became very symptomatic. I was diagnosed with major depressive disorder and put on antidepressants. Throughout the next couple years (up until this point) I have continued to gain weight, experience extreme fatigue, brain fog, etc. I finally found a dr that would seriously look into my thyroid. He diagnosed me with hashimotos after extensive blood work. Two weeks ago, I began to experience seizure-like episodes, extreme cognitive issues (sounding like I was coming out of anesthesia or on drugs) and my husband took me to the ER. EEG, CT and CTA came back normal. I followed up with a neurologist who said I was just “hyperventilating” and it’s just anxiety. I had an MRI which the radiologist read as abnormal and the neurologist said was fine. After leaving the hospital, I have continued to have these “episodes”. I have difficulty speaking and writing at times, walking, my legs and arms will feel like lead, and I have extreme exhaustion. My TPO antibody levels came back high as well as my antithyroglobulin levels. Are these the symptoms of HE???? I’m seeing a different neurologist for a second opinion on Tuesday.
Janie Bowthorpe
Brittany, I can sure see why you are suspicious of HE with the symptoms you describe. Perhaps a doctor will allow you to try the use of steroids and see what happens.
Andrea
I was diagnosed with Hashi during my third pregnancy in OCT of 2016. I was stable until baby #3 was 3 months old. Since then it has been a roller coaster. … adding to the fact we moved and my doctors changed didn’t help. Your above comments/symtoms are so similar to my own. I finally saw a doc who suspected HE. In fact he moved up my EEG and brought me back in that week (vs the next month when my apt was actually scheduled) so that he could treat me on his last day seeing patients(military and he was transferring to another country.) I’m so thankfull he made time for me. He treated me with IV steroid and immediately all symptoms were gone. I felt like I was back! I could move, think, no numbness…. only on steroid for short period, and as coming to end of treatment the numbness and some symptoms are stating to reappear. Don’t know what that means, but go for a follow up in a month.
Jana
I’m disappointed. I asked my endocrinologist to switch me to Armour thyroid yesterday and after he reviewed my labs, he said he would increase my Synthroid and Cytomel. I told his nurse that I wanted to try Armour which he had promised to prescribe if the Synthroid/Cytomel didn’t help. Today his nurse called and said that he doesn’t think I have a thyroid problem at all. How is it possible that both of my antibodies are off the chart high, my T4 is low, my ultrasound reveals inflammayion but now he recanted the Hashimotos diagnosis?
Jana
I am a 45 year old women with Hashimotos diagnosed in 2013 but symptomatic since 2012. I was referred to an endocrinologist for possible low progesterone but an exam, ultrasound, and high positive antibodies x2 proved the Hashimotos diagnosis. I really did not understand the difference between Hashimotos, a disease and Hypothyroidism, a condition so when my endocrinologist prescribed Synthroid and Cytomel, i was certain that the brain fog, difficulty speaking and writing, disabilitating fatigue, memory difficulty, insomnia, painful and swollen glands in the neck, facial numbness, etc., would disappear. Nope- it’s getting so unmanageable that I do now is lay in bed, I won’t eat (very thin at 5’9″ and 125 lbs) and hope that somebody will treat me with prednisone because none of the specialists would seriously consider the existence of HE after my endocrinologist referred me for further testing. My EEG showed slowed temporal waves, positive clinical picture, both thyroid antibodies high positive. They dismissed the existence of HE and insinuated I was crazy brought on by high stress and anxiety. The neurologist I saw actually told me that I would have to report to ER and be drooling and shitting myself before he could consider the diagnosis. Will someone help me ?
Deb
Can HE be episodic? I was diagnosed with Hashi in 2010 and it took almost a year to stabilize with meds. Over the past year and a half I have been going through these periods of confusion, memory loss, word confusion, lack of focus, fatigue and slight tremors in my fingers. I just cannot think, my brain will not function! It usually lasts several weeks and then I start to feel better, almost back to normal. I had an EEG back in 1997 and another in 2009 and both showed ” slow brain activity in the frontal lobe”. An MRI showed “lesions” that were “considered normal for my age” (56 currently). I see an endocrinologist every 3 months and a rheumatologist annually to check my autoimmune levels and symptoms (possible lupus). No one has ever mentioned HE.
jordan k
I have hashimoto’s and I weird symptoms with memory, muscle twiching, head aches, intestinal problems eye drooping. have a hard time detoxing due to a mutation I have had mri ct emg adrenal test and they are in normal range one doctor said maby lymes or hashimoto’s encephalopathy which can be detected by a eeg I real need help
Michelle
I have no reason to believe I have HE; however, I do have Hashimoto’s Disease (diagnosed by Mayo Clinic). Does all the information and advise and type of medicine to take for Hypothyroidism from your website go out the window with this diagnosis?
Janie Bowthorpe
Michelle, STTM is based on years and years of patient experiences all over the world, and yes, it applies to Hashi’s patients, too. 🙂
Fallon
I was diagnosed hashimoto last September 2013 I know that I have had this for longer than that though back in September 2011 I unexplainabley lost oxygen to both sides of my brain for several days could this be a sign of hashimoto’s Encephalopathy I was also diagnosed with narcolepsy after my unexplainable brain injury?
Janie Bowthorpe
Sleep disturbance is known to be a symptom of Hashi’s Encephalopathy, as is cognitive issues, but not sure about the loss of oxygen to your brain. Does make one wonder, though. Really sorry you’re having to go through this!
Donna
I have been diagnosed with HE by my primary but he wants me to see a specialist to confirm before doing iv therapy. I’m taking 20mg of presnisone till I see neuro. Have had symptoms for over a year with testing for everthing from
MS to lupus. Neuro in town said it was probably
MS but couldn’t confirm with lumbar puncture
showing abnormal. Have brain lesions. Took
prednisone for asthmatic bronchitis and
symptoms lessened. Told doctor what I noticed and he researched. Seeing specialist in San Francisco.
david
My son was diagnosed with a single blood test and of course all the scans you can imagine anyway Stanford hospital was the only place we were able to find a doctor that would listen to us and try to find the cause of his issue and not just feed him cocktails of drugs not even knowing for sure what his diagnosis was. Tined out he has H.E. and we are also looking into P.A.N.S. although I don’t think he has this also. Great Neurology Dept. there.
Virginia
I have just been diagnosed with HE. My symptoms were those of a stroke and had very quick onset, of one week. I do have Hashi’s with high antibody levels. MRI normal, Neurologist ordered full blood panel, EEG and spinal tap. He had seen one other case in the last ten years and so could recognize the symptoms. He has prescribed Prednisone 60 mg per day. 24 hours into steroid treatment and tremors and headache are so much better already. Thank goodness I happened upon a doctor that had seen this or I might be in a coma today. Waiting for further tests, just wanted to share progress so far!
Ana Garcia
hi, I have been with depression and bad anxiety symptoms since dec.2011, fatigue, taquicardia, bad nausea and weight loss. Have taken every antidepressant there is. Two months ago I decided to travel to Houston, Tx. A neurologist and internist are now in charge of me. My TPO and autoimmune antibodies are high and a PET Scan is not normal. I had a treatment of 5 days of solumedrol 1 gram, IV. and will have once a month only one doses of 1 gr. It gave me terrible symptoms, nausea, weakness, confusion and anxiety. I am not better at all, taking antidepressants and ansiolitic. I am very confused and anguished because I am not sure what is going on and if I have the right diagnose.
Janie
Ana, here are great patients groups which might help: https://stopthethyroidmadness.com/talk-to-others
Cheryl M Goul
Cheryl- there are a lot of different tests that can be done to eliminate other possibilities that may mimic HE, because everyone’s case is different. That is what what was specifically used for me, my apologies. Also in my case, a rheumatologist, endocrinologist and neurologist immunologist, were involved in the dx. All were from Thomas Jefferson University Hospital in Philadelphia.
Lori Vincent
Cheryl, my mom has been treated for parkinsons for 15 years. Not until recently did anyone test her thyroid. She has seen doctor after doctor who says “you don’t seem like you have parkinsons” yet continue to treat it. Her thyroid peroxidase anitbodies was >1000 when tested. Nobody will look past the parkinsons because that is what is in her file. Can you please contact me with names of the doctors in Philadelphia? My mom has seizure like eipsodes with tremor and spasms so bad that they last hours EVERY DAY! She is going to die before any doctor will put some effort into finding out what is really wrong. It is so sad what healthcare has come to!
donna
I went from doctor to doctor, which included, a first stop to the emergency department because I was having muscle cramps so bad, my entire body was cramping, spasming, and I’d have my legs and arms jerking when I was asleep. They diagnosed me with Dermomyositis or Polymyositis, and ended up going to a neurologist, they stuck a needle in my quadracep, the electrical impulses were normal….on an on it went, but when it finally came down to it, a intelligent doctor agreed to change my thyroid medication from the GARBAGE…JUNK called SYNTHROID, to Dessicated Thyroid, I recovered in three months. But within 36 hours of taking the first 30 mg pill my muscles returned to normal. The doctor I was was Internal Medicine specializing in the thyroid, but the idiot University trained Endocrinologist refused to even treat me with Cytomel a synthetic T3 hormone, this menace should have his licence revoked and should be digging ditches for a living, not working with people and medicine….
Now I have what is acting like Addison’s and it’s been a year to get anyone to send me for an ACTH test, which is in two days..
Diana
I went through hell an back with four doctors. I was told my 60 lb weight gain ( fron size 3 to 18) in five months was from perhaps an extra cookie per day. Edema. HTN. Mini seizures. Raynauds. Fibro. Sleep apnea. Eyebrow and eyelashes falling out were a sure sign of hypothyroid but I measured Normal. I got an old friend MD to put me on T3 which began working right away. I had to work at getting my Minerals balanced again so I could absorb my vitamins. Oct 2016 I stopped taking T3 since I started taking iodine along with about 600-800 mg Magnesium per day and 2-3 Brazil nuts per day for selenium. Use a water filter as the chlorine and fluoride are halides which compete for the iodine receptors in thyroid gland etc. take a good quality multivitamin ( with 100% of vit D too). Eat organics and avoid processed foods. Steam your cruciferous veggies ( goitrogen foods) first. Do NOt get in a hot tub with bromine and chlorine. I did that last year and could barely walk for a week because my fibromyalgia is linked to my hypothyroidism and chemical sensitivities.
gloria
Hi I think my boy friend has HE. Can you please tell me who are the doctors at jefferson in philly who treated you? His endo told him that HE doesnt really exist! Omg!
Please help-
Help!
Ciara
I have HE. I know you asked about doctors at jefferson in philly, but I just want to say if you can’t find out anything I am sure that if you go to Vancouver’s Children’s Hospital that will be able to help you. that is where I was when I was in my coma and the doctors figured out that I have HE. im the only person in Canada with it and I’ve had it for 12 years. if you go on http://www.youtube.com and type in Jaydee Bixby and Ciara Walls you can see some info about myself and HE.
Mary
Hi Ciara, You mention Vancouver children’s hospital. Do you have a doctor you would recommend. Both my daughter have had vasculitis ( immune system attached the youngest blood vessels and the older one it attacked her kidneys, then the youngest one… the immune system has now attacked and destroyed her thyroid. booth have hashi and myself. The youngest levels should be 60 and are 1300 to 2000. Children say there is nothing they can do and wont even refer us to a immunelogoist as they say there is nothing they can do to stop the immune system attacking. Next could be the pancreas and diabetic. So i am interested to know what doctor at least knew about H. E. thanks Ciara
PD a few years back the youngest even went paralyzed for an hour from waist down.
Five years now of weight gain and me saying something is wrong and they can do nothing but watch what immune system attacks and treat symptoms not the cause
Helen
Hi Mary: Dr. Tom O’Bryan from the Institute of Functional Medicine in the U.S. has answers for reversing autoimmune disease. I’m reading his book, “the Autoimmune Fix” which has guidelines to getting help. The major thing, he says, is to get off gluten as gluten (ie wheat, rye and barley) causes autoimmune intestinal permeability that leads to chronic inflammation anywhere in the body where it attacks. I’ve searched for this kind of medical help in Canada; ‘they’ say the best here is naturopathic medicine for autoimmune disease. I’ve been to doctors here in Alberta for inflammation or problems in the head; ‘they’ say they have no answers for chronic inflammation. Functional Medicine Doctors in the U.S. have answers to this problem. I hope this helps. I don’t have help yet either but I’m reading and will have to take the next step soon. I’ve had hashimotos since age 13 and other autoimmune problems; now I’ve got something going on in my head that no one helps me with.
Charity
Would you mind contacting me I am in Alberta 🙂 I tired to follow your link but it’s a dead end.
Janet
Cheryl, My father has all the symptoms of Hashimoto’s Encephalopthy. He was just released from a one-week stay at Jefferson, and the doctors are baffled. You mentioned doctors you see there – could you possibly give me their names? We are desperate to get him help. They’re talking about “parkinsonisms”, movement disorders, etc., but his symptoms came on suddenly — he was bowling in July, now he can barely stand. They’ve done all the standard tests. Please let me know of any Philly medical connections re: diagnosis/treatment. Many thanks. Janet
Cheryl M Goul
Cheryl- often TSH is normal. TPO (peroxidase antibodies) and antithyroid globulins are high. Normally an MRI/MRA is ordered as well as a lumbar puncture.
Cheryl Street
Laura – Can you share some of your symptoms and how you discerned you had HE? My Mom has tons of these symptoms and I asked my endo about this condition (because my Mom has never been tested for thyroid disease EXCEPT by TSH)and they acted like it would be a neurologist that would diagnosis and look into it and when I asked the neurologist she said TSH was fine so there was nothing to worry about. However, my 21 year old daughter and I have recently been diagnosed w/ Hashi’s and so I am not sure if I should push for my Mom to have additional testing or if I am over reacting.
david
Have the doctor check the anti-bodies/TPO in the blood serum. Normal should be under 40ppl., my son has HE and his blood anti body tpo were over 1000.
Laura
Hello! Can you tell me if your friend Beverly is still doing well? I have not seen any recent updates on her site. I too suffer from HE and was hoping she is still well? Thanks!
Carol
Prednisone certainly is not something to take long-term. I think that should be emphasized.
Jill House DC
Gluten allergy has been linked to many autoimmune diseases. Get off gluten and in some dairy too and see how you feel. Also iodine deficiency causes tpo antibodies
Hannah
I have been off both with no improvement sadly 🙁
Mare2821
Try the FODMAP diet. Researchers now thing that these simple sugars are harder to digest than gluten and that they may be the root of a lot of autoimmune disorders… I tried Paleo and had great improvement
Jill
I read this the day you posted it and thought it sounded like me. At my neurologist appointment this morning, without my ever mentioning it, my doctor told me he thought I probably have this condition. I’m so glad I had read about it here first so I knew what he was talking about, and I’m even happier that after several years and numerous doctors someone has finally hazarded a guess as to what might be wrong with me. Thank you for the information.
Judy
I have had grave concerns for my mother, who has been treated for years for Parkinson’s and who is now essentially paralyzed, not even able to swallow or move more than her hands, and barely able to speak. Basically, she has had most of the symptoms you list here, and EACH ONE gets treated as a separate condition or symptom, often resulting in a potentially problematic medication “cocktail.”
Recently, when I had gone too long without following up with my endo and needed a dose increase on my levothyroxine, I started having real problems walking, barely able to shuffle my feet, SO MUCH like my Mom’s Parkinson’s symptoms. Within days of increasing my dosage, the symptoms went away, as did the edema in my lower legs. This prompted me to try to find out if the same could be a treatable part of my Mom’s problems.
To my shock and dismay, she has never been thoroughly evaluated for thyroid deficits beyond a cursory check to see if her T-4 was WNL, nor for antibodies! She did NOT show high A-B levels when I finally begged her neurologist to at least look into it, but did show somewhat low T-3. (antithyroglobulin not checked)
What kills me is how many hypothyroid symptoms do overlap with serious neurological disorders and nobody seems to really be looking at that component, which is generally so very treatable.
If you have loved ones who are being treated for movement disorders, please look into the possibility of a thyroid connection.
Personally, I have been treated for years for a laundry list of “conditions” that ALL fall in line with common hypothyroid symptoms. I was in the military in southern Germany when Chernobyl blew up and was exposed to a large amount of perchlorate later, both very bad for the thyroid. I have been though that proverbial “slew of tests” and still only got (if anything) about half the T-4 dose I needed until recently. Lots of Thyroid Madnees going on here!
Trudi
OMG! THANK YOU! My 9 yo daughter has been having a LOT of seizures and major cognitive decline recently and the anti-seizure meds are not working. She has hashimoto’s and most of the above symptoms! Now I hope that one of her doctors (endocrine or neuro) will take a look into this! I’m still working on my own personal DO to get my hashi’s properly treated. Funny how myself and 2 young daughters have hashi’s. I wish proper medical care was not so difficult.
Trudi
update on my post above…. in 2012 my daughter declined very fast and went to the ER with status epilepsy In July. After 3 weeks of ICU, the neurologist diagnosed her with Hashimoto’s Encephalopathy. Hmm. How about that! Her Endo still says it doesn’t exist.
Ciara
I have HE also. if you don’t mind me asking, what symptoms does she have? and where does she live, like does she live in the USA, where???
Ambrea
My endocrine says its my diabetes that is giving me my symptoms…. Yet both times during er visits the doctor informed me my seizures are not due to my sugar levels…. Its stressful when endo dr does the test for Hashimoto’s Encephalopathy and test results comes back with high levels of thyroid antibodies yet states thats not it. I am getting a second opinion because i have to look in the dictionary to spell simple words and i have a hard time think of words to say… Its horrible
Diana
Make sure you take at least 600-800 mg of Magnesium per day in addition to your good quality multiple vitamin ( not gummies). I would also take at least two New Iodine ( order online) capsules every morning ( unless contraindicated with thuroid meds but usually you can take iodine too). PS, I got very mineral deficient due to my hypothyroidism ( I measure mpnormal but don’t convert T4 to T3 and many docs don’t know how to treat that issue) and started having mini seizures. Magnesium, Iodine and some extra selenium took care of issues that 4 doctors couldn’t figure out.
Janie Bowthorpe
That is something people would want to build up to, Diana, as far as magnesium. Just taking that much starting out would cause serious diarrhea in many.
Paige
600-800 mg Magnesium is fine, so long as you’re taking the right kind. Diarrhea as a side effect from magnesium is due to it not being absorbed well, thus it is flushed out. While this can be the result of an overdose, if you will, overdosing from magnesium is quite difficult as its a very safe and gentle supplement. Diarrhea from magnesium is from magnesium oxide, which is sometimes added (hidden) to other varieties, as well. So long as you buy NONBUFFERED Magnesium Citrate, glycinate, malate or threonate then you’re fine. I started out taking 2000-3000 magnesium Malate per day and have never had tummy distress from it.