I recently 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 but under-diagnosed: Hashimoto’s Encephalopathy. She stated “I think everyone who has Hashi’s should know that this exists because the symptoms are so similar to severe neurological problems. And the treatment, though not cureable, is relatively easy to do….” Hashimoto’s Encephalopathy (HE), a rare neuroendocrine disorder which was termed and recognized just 44 years ago in 1966, has a strong connection to the autoimmune thyroid disease called Hashimotos, or 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. Those with HE can share many symptoms, or can have unique symptoms from each other. Symptoms include:
- tremors (most common symptom)
- language difficulty, whether speaking, writing or read (also common)
- confusion
- limited attention span or concentration
- poor memory and retention
- dementia diagnosis
- disorientation
- restlessness
- seizures
- convulsions
- symptoms similar to a stroke
- tremors
- muscle jerking
- poor coordination (walking, fingers, hands, etc)
- partial right-sided paralysis
- headaches
- fatigue
- sleep problems
- psychosis
- coma
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. Thanks to Bev for bringing this issue back up. ******************************** Have you signed up to be notified of these blog posts? To do so, go to the left and below the links right on the Stop the Thyroid Madness blog.
This entry was posted on Tuesday, June 22nd, 2010 and is filed under +Audience. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Trudi said:
Jun 26, 10 at 12:30 amOMG! 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.
Judy said:
Jul 02, 10 at 2:46 pmI 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!
Jill said:
Jul 15, 10 at 10:56 amI 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.
Jill House DC said:
Oct 25, 11 at 9:02 pmGluten 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
Carol said:
Jan 30, 12 at 9:21 amPrednisone certainly is not something to take long-term. I think that should be emphasized.