Discussions By Condition: Medical Errors

depression ----> Hashimoto's Encephalopathy

Posted In: Medical Errors 9 Replies
  • Posted By: Anonymous
  • March 18, 2008
  • 07:43 AM

I've probably posted this before, but wanted to put this out again just in case it can help someone else. About eight years ago, I started having problems with severe fatigue, increasing migraines, and some (mild) neurological symptoms, especially my balance. I also noticed some trouble with memory, concentration, and word-finding. I also had some of the symptoms one would associate with low thyroid function (constipation, hair loss, dry skin, puffy eyelids, hoarseness, elevated cholesterol and triglycerides, hearing loss, etc).

After being worked up several times for MS and other neurological disorders, but with negative results, my symptoms were attributed to depression and stress. Because my TSH and other thyroid hormones were normal, I was reassured over and over that my thyroid gland was healthy...

The fatigue continued to worsen to the point where I thought I needed to start saving up money for a motorized wheelchair, as I felt too weak to get a regular one and wheel myself around. The balance problems led me to use a cane. The migraines were almost daily. Before I got sick, I used to be someone who could hike 8-12 miles and feel exhilarated. Now, just going out to the mailbox wiped me out. Most of my doctors were still calling it depression and stress. They kept insisting that I just needed the correct antidepressant, and therapy. They wrote down in my chart that my symptoms should be treated as "hearsay".

But I suspected that the weakness in my legs was too severe to be just depression, and I knew I wasn't making up my symptoms or exagerating them. One neurologist convinced me that I was neurologically ill, but with what, she could not say. She convinced me to pursue a diagnosis and finally, my 8th neurologist diagnosed me with a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy.

HE is diagnosed by checking thyroid antibodies, even if your hormones are normal. Most HE patients have normal hormone levels. I had an ultrasound of my thyroid gland after my diagnosis, and it was full of tiny nodules from the autoimmune destruction. I was floored.

HE is treatable with steroids. After one pulse, the profound weakness in my legs lifted. I still have some residual fatigue and headaches, but am drastically improved. The earlier HE is caught, the better. It can produce more serious symptoms such as coma, psychosis, stroke-like episodes, and seizures. Each case looks different.

I don't know if this will help anyone, but I thought I'd throw it out there. Hopefully it won't take anyone else 8 years and a lot of humiliation to get diagnosed correctly.

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9 Replies:

  • I also have HE. I have been misdiagnosed with seizures, MS, Depression, Stress disorders, paralysis associated with rheumatological diseases, andanxiety attacks. II have been struggling with it for about a year. I was diagnosed first in feb. of 2008 but this diagnosis was only recently confirmed. I am 17 years old now. I see a doctor named Dr. William Gallentine at Duke Hospital in Durham NC. . There are also good doctors at UNC, like Dr. Greenwood (I think that's his name, I can't remember) and Dr. Tracy Schaefer is the woman who diagnosed me, although I would NOT recommend her as a Dr. In other news, I have problems finding words, severe fatigue, tingling in my face, paralysis, going "out of my body", ataxia, and many other things.I strongly recommend Plasmapheresis (also called plasma exchange) and IVIG treatment. these treatments are wonderful because they provide the results of Prednisone with out the horrible effects. really, if you have HE please insist that your doctor at least try these treatments. they are worth it for too many reasons to count.
    Anonymous 42789 Replies
    • October 28, 2008
    • 09:53 PM
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  • I have many of those symptoms but there more intermittent and have been going on for 11 years...I have been told the same thing. My legs get so weak I feel like there jello and I get the feeling like I’ve just woken up from surgery all the time(maybe extreme fatigue?)...please tell me wether you symton were intermitant and how I can get a new diagnoes. My TSH has gone between hypo and hyper but they said it was due to meds. I'm 16 years old.:(
    Anonymous 42789 Replies
    • November 10, 2008
    • 03:00 AM
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  • Hi Elke,I am wondering if you are still posting on this site. I would really like to talk to you, because I have had many of the same symptoms that you had, and I have questions about other symptoms that I wonder if are related.
    Anonymous 42789 Replies Flag this Response
  • I have many of those symptoms but there more intermittent and have been going on for 11 years...I have been told the same thing. My legs get so weak I feel like there jello and I get the feeling like I’ve just woken up from surgery all the time(maybe extreme fatigue?)...please tell me wether you symton were intermitant and how I can get a new diagnoes. My TSH has gone between hypo and hyper but they said it was due to meds. I'm 16 years old.:(HE is the worst thing that ever happened to me. i lost my rep and friends. i was confused saying bogus stuff like i was born retarded when really im gifted. i also kept repeating stuff. i was halucinating. i even got arrested cause they thought i was crazy and almost put me in a mental hospital. my brain was inflated. i went through all that and i was only 10. now im 11 and everything else i cant remember.
    Anonymous 42789 Replies
    • September 6, 2010
    • 04:46 PM
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  • Hey everyone i have HE. i've had it for nearly two years now, it's been so hard getting through it. anyway if anyone wants to get in touch i have a facebook page all about HE it's called 'supporting those with hashimoto encephalopthy' please come and talk i didnt think there was anyone like me.
    Anonymous 42789 Replies
    • November 29, 2010
    • 11:22 AM
    • 0
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  • hey guys, i have recently been diagnosed with ankylosing spondlitis and hashimotio's, Its great to get a diagnosis after three years, The doctors still cant work out why i am still suffering from these symtoms, confusion, brainfog, balance issues , extreme fatigue, sensitive to heat, muscel jerks also had sezuires a few months back but they only started when they put me on anticonvulsants , because the thought it was epilepsy. Just wondring if you experenced these symptoms and how you went about getting a diagnosis.Cheers
    Anonymous 42789 Replies
    • November 30, 2010
    • 04:06 PM
    • 0
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  • hey guys, i have recently been diagnosed with ankylosing spondlitis and hashimotio's, Its great to get a diagnosis after three years, The doctors still cant work out why i am still suffering from these symtoms, confusion, brainfog, balance issues , extreme fatigue, sensitive to heat, muscel jerks also had sezuires a few months back but they only started when they put me on anticonvulsants , because the thought it was epilepsy. Just wondring if you experenced these symptoms and how you went about getting a diagnosis.CheersI was diagnosed almost 2 1/2years ago with symptoms going on 3 years. My diagnoses was process of elimination. I also have the balance issues that's how it started. Muscle jerks on right side, short term memory is horrible, confusion, I cannot multitask at all. I'm over stimulated with sounds, the heat hurts my body. Mine cycles good for 4 weeks and then I'll have 4-6 weeks where I stay home and cannot do anything. All my mri's have not shown anything it's just all my symptoms have come down to the hashimotos Encephalopathy. Would love to talk with others that have this!!!
    Anonymous 42789 Replies
    • December 12, 2010
    • 08:44 PM
    • 0
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  • i have to say i have been diagnosed with HE since i was 13 after going into a coma three times :( i had to learn to walk,talk, everything again, im not trying to be mean but get over it, stuff happens in life atleast we are alive and thank god we have an excuse to take everyday as it comes, im 21 now and love the fact i know how precious life is, dont take it for granted :P
    Anonymous 42789 Replies Flag this Response
  • Hi guys,Am just looking for some advice. Have been sick for almost 3 years and no closer to an answer but your symptoms sound familiar to mine and wanted to know what you think. Was basically like someone flicked a switch and I was sick. Was a very healthy, physically fit 24 year old female when it happened, am now 27 and pretty much house bound.Symptoms:Dizziness, dry mouth, weird vision, dry eyes, pain when moving eyes on occasion, memory problems, brain fog, intermittent constipation and diarrhoea, anxiety attacks, heart palpitations, acne, low libido, muscle weakness, headaches, fatigue, pale skin, feeling low, weight gain and weight loss (constantly fluctuating), allergies, pins and needles, eye twitching.Have had numerous tests done and they found a pituitary cyst but they think it isn't causing problems, slightly high csf fluid, low calcium levels ,evidence of celiac disease through a bi-opsy but not conclusive. (have been on a gluten free diet for over a year and it has helped a bit but not the answer obviously) I don't have the exact blood work results here but Thyroid function was pretty low, very close to being outside the range but not low enough to take action here. Blood pressure and blood sugar always low.Do you think it is worth getting my thyroid anti-bodies checked? They aren't very holistic here in Ireland, it's all black and white. Also if I have celiac disease is it more likely that I would have another autoimmune condition.Any advice would be very welcome.
    jacqui1983 1 Replies Flag this Response
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