Discussions By Condition: Nerve conditions

Hashimoto's encephalopathy- anyone heard of it or with it?

Posted In: Nerve conditions 5 Replies
  • Posted By: anushka
  • July 29, 2009
  • 06:08 PM

I have posted on the autoimmune forum re: history of having headaches for the last 28 years which have incredibly worsened over the last 5 years. We have a positive family history of migraine so all the neurologists i had been to thought this was the sole diagnosis. Three years ago I was discovered to have underactive thyroid with increasingly intractable headaches.
Currently going thru a spell of a daily 10 week headache. Started seeing a new neurologist about 8 weeks ago who after systematic reevaluation of history and examination asked for thyroid antibodies which were high. He started me on high dose prednisone and i am now gaining some relief.
Finally someone is able to tell me that I have a genuine condition and that it is not that i have diff with dealing with life's stressors or anxiety etc. or that i am rebounding or getting withdrawal pain from my analgesics. Everyone was so willing to say that i could not cope or to lump me in the 'unable-to-treat-category' except this new dr. who said every HA has a treatment option, we just have to find it.
I would be so grateful if anyone with a similar story would respond. There were no responses thus far on the autoimmune forum. It would be nice to hear from anyone who may have same condition as this and what treatment progress etc has been like

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5 Replies:

  • Hashimoto's disease does not have unique signs and symptoms. The disease typically progresses slowly over a number of years and causes chronic thyroid damage, leading to a drop in thyroid hormone levels in your blood. The signs and symptoms are mainly those of an underactive thyroid gland (hypothyroidism). The signs and symptoms of hypothyroidism vary widely, depending on the severity of hormone deficiency. At first, you may barely notice any symptoms, such as fatigue and sluggishness, or you may simply attribute them to getting older. But as the disease progresses, you may develop more obvious signs and symptoms. Signs and symptoms of hypothyroidism include: ■Fatigue and sluggishness■Increased sensitivity to cold■Constipation■Pale, dry skin■A puffy face■Hoarse voice■An elevated blood cholesterol level■Unexplained weight gain - occurring infrequently and rarely more than 10 to 20 pounds, most of which is fluid■Muscle aches, tenderness and stiffness, especially in your shoulders and hips■Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet■Muscle weakness, especially in your lower extremities■Excessive or prolonged menstrual bleeding (menorrhagia)■DepressionWithout treatment, signs and symptoms gradually become more severe and your thyroid gland may become enlarged (goiter). In addition, you may become more forgetful, your thought processes may slow, or you may feel depressed. When to see a doctor See your doctor if you're feeling tired for no apparent reason or have any other signs and symptoms of hypothyroidism, such as dry skin, a pale, puffy face, constipation or a hoarse voice. You'll also need to see your doctor for periodic testing of your thyroid function if you've had previous thyroid surgery, treatment with radioactive iodine or anti-thyroid medications, or radiation therapy to your head, neck or upper chest. If you have high blood cholesterol, talk to your doctor about whether hypothyroidism may be a cause. And if you're receiving hormone therapy for hypothyroidism caused by Hashimoto's disease, schedule follow-up visits as often as your doctor recommends. Initially, it's important to make sure you're receiving the correct dose of medicine. And over time, the dose you need to adequately replace your thyroid function may change.
    Anonymous 42789 Replies Flag this Response
  • Hi,Thanks for your reply. We are aware of Hashimoto's disease already and its signs and symptoms and i have been on appropriate treatment for same. The entity of which I speak is the "encephalopathy" that is associated with it and is actually quite rare and documented in only about 32 patients worldwide. Neurological symptoms such as headache, ataxia, aphasia are common. i was hoping that I would meet a kindred sufferer online.anushka
    anushka 3 Replies Flag this Response
  • I have it. I've had it, diagnosed for over 6 years now. I am taking intravenous IvIG which is giving me significant relief from the symptoms. There is an excellent support group online for patients. Just search hashimoto thyroiditis and follow the links from Barbara's page.Good luck!
    Anonymous 42789 Replies Flag this Response
  • I have it as well and went for over 20 years without being diagnosed properly. I thought I was losing my mind or had Alzheimer's until I went to a neurologist who has done extensive research studies on HE. I did a couple of rounds of steroids and improved. I began taking hydroxychloroquine as a long-term treatment. I just increased my dose after my symptoms returned. It is a scary diagnosis. HE can go into a remissive stage and return with a vengeance and any time. Just stay on top of the symptoms so you can get treatment quickly before it causes permanent damage. I have deficits that are not getting better with treatment because I went so long without help. Good luck to you....
    Anonymous 42789 Replies Flag this Response
  • Yes. I am a 27 year old female and my mother has Hashimoto (although I believe she went half her life getting misdiagnosed with fybromyalgia). I have been relatively healthy my entire life up until recently. In a three week time span my health spun out of control. It started with daily headaches, neck stiffness, ear aches. It then progressed to the right paralysis in the right arm. I began to have trouble walking - my balance was off. I always had to grab something to keep balance, aside from that my legs and arms were extremely week. My hands were extremely uncoordinated and started dropping objects several times a day. I also had trouble with my speech - finishing sentences, and pronouncing letters such as "T, S, TH" and stuttering. EX: "T T T Tomorrow". My thyroid test came back 7.2 in the meantime I was tested for other disorders such as Lymes which came back negative. I really believe that I have this rare condition and I cancelled my neurologist appt and made an appt with my endo instead to be tested for further thyroid related illness. I will updated when I get results.
    graceface7 2 Replies
    • January 22, 2013
    • 04:03 AM
    • 0
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