been dx with Hashimiotos enc........

[Melissa072]

Hi guys,
I have been experiencing horrible symptons for a while now, and have been told of neur that my thyroid antibodies are very high and he saysI have Hashimotos Enc.........(some long name and I can't even spell it). I was also dx with a multi nodular goitre 2004, and endo told me to get ultrasound and blood test every 12 months to make sure no nodule turns cancerous and to make sure thyroid isn't under or over and that it will one day. Anyway I have experienced dizziness, burning, cold spots, tingling, numbness, brain fog, and have even had 2 lots of mri's to look for ms with nothing showing. I'm at my wits end and onto neuro no 2, this H.E is apparantly very rare and when I google it my symptons don't really match, although they do with hashimotos thyroid or something, my thyroid has been tested and neuro says its fine, it the antibodies that are high, is this all they need to dx H.E? I don't know much about thyroid problems, any help or advice would be very much appreciated.

[Melissa072]

The only test I had was blood test, he said high levels of thyroid antibodies were in my blood and dx me with H.E.
I rung him today and questioned the treatment and dx as I believe my symptons are all ms related, although I have just had another mri done with and without contrast this time and still it shows nothing. My neuro told me today that its not uncommon to have a normal mri and lumbar puncture and still go on to have ms. I am going to have L.P. this weekend. He told me steroids is the best this as it will help get rid of attack if it is ms and get rid of symptons if its H.E. I have googled H.E. and the symptons are not mine, I did however come across a hashimotos thyroiditis and it mentioned tingling, numbness, and burning, at this stage I am sick of not knowing and its obvious no dr knows either, and can't give me any answers or dx until something shows on a test, so if my results of L.P. don't show anything, I'm not going to another dr again, I have really had enough, they don't have enough time to listen, and even with all my symptons that I've had for about 4 years that come and go and worsen in heat, he's made it quite clear that he can't dx me with ms until something shows..........

[chigirl29]

Introduction: Hashimoto's encephalopathy is an unusual condition that is associated with Hashimoto's thyroiditis. Myoclonus, epileptic seizures, dementia, and disturbances of consciousness are the most common features.

Case report: We present an atypical case of Hashimoto's encephalopathy in a 33-year-old woman who presented with several brief and acute psychotic episodes. After treatment with steroids, there was an improvement in the patient's psychiatric symptoms and electroencephalogram, and antithyroglobulin antibody titers returned to normal levels.

Conclusions: It is our opinion that Hashimoto's encephalopathy should be considered in the differential diagnosis of atypical psychosis, especially because this is a treatable syndrome. This is particularly important in patients with a previous history of thyroid disease, despite current normal thyroid function.



PubMed

PubMed Citation  
Articles by Arrojo, M.  
Articles by Baca-Garcia, E.  

Psychosomatic Medicine 69:200-201 (2007)
© 2007 American Psychosomatic Society


Key Words: Hashimoto's disease • encephalopathy • single-photon emission-computed tomography • psychiatric symptoms

[chigirl29]

Have you had any episodes--like that of psychosis?  Have you had an muscle jerking?  Any speech problems?  Loss of cognition?  Cognition is not facts--like book learning.  Cognition is more like the process of knowing/learning.  

You can have a normal MRI, but you might need a spinal tap.

A MRI, if abnormal might show grey matter, in the temporal area--

Grey matter means your neurons that should have a fatty myelin sheath around them do not--this can cause conduction problems.

Some areas of the brain are naturally without a myelin sheath--these are grey areas of the brain.

I have had all of the above symptoms happen to me and have ruled out schizophrenia and other disorders.

A lady PMd me today because she said her daughter was diagnosed bipolar and it turned out she had a tumor that was causing her neurological distress.

Just because something is rare does not mean that it is not a cause of your problem, also, my symptoms corresond to my thyroid's death--so it could have just been caused by the death.

I have been told that my thyroid dying at such a young age is rare.  I have a strong family history of autoimmune conditions--I'm already in the rare category I guess.

Some doctors believe that HE is really a separate neuro diagnosis, and I tend to agree with that.

[AR-10]

I agree with kitty 9309.

It is very rare, it is hard to diagnose, and the treatment can be harsh on the body. I would want to consult more than one specialist, which you have, and I would want an explanation that I could understand as to the findings that have led to the diagnosis.

Here are a couple of links, which you probably have read before.

I am not holding them up as God's truth on the subject, but they discuss it and maybe there is something in one of them that will prove helpful to you.

Best of luck to you, and keep us informed on what you find out in the coming weeks.

http://www.encephalitis.info/TheIllness/TypesEncephalitis/Hashimotos.html

http://qjmed.oxfordjournals.org/cgi/content/full/96/6/455-a

http://www.thyroid-info.com/helps.htm

[kitty9309]

Ask your neuro what criteria he used to diagnose the HE. Many of us have the high antibodies, but that doesn't make for a diagnosis of HE.

I had the dizziness also- went away with Synthroid treatment. 3 normal MRI's.

I looked up HE for myself recently and it said there would be changes on the MRI.

Ask the doctor before comitting to the iv steroid treatment.

Good luck and it is good that you are questioning this.

[Melissa072]

H.E. stands for hashimotos encephalopathy, this is what my neuro called it, he said my thyroid was fine, but the antibodies are way high, he put me on steroids for 9 days and said that should take away all my symptons, but I had no change, so I am going into hospital next weekend to have steroids again via a drip. I think he did all the other thyroid tests and everything else was ok, I'm still not sure about the dx of H.E. as it's supposed to be very rare. I don't know if there is a connection or if its the same thing as hashimotos thyoditis, is that when thyroid antibodies are high, maybe it's the same thing?

[motherC]

Yes, high thyroid antibodies are the definitive test for Hashimoto's Thyroditis. I'm not sure what this Hashimotos enc....is. Never heard of it. Anyway, what is your TSH? For people with Hashimoto's Thyroiditis  the TSH should be kept between 1 and 2 for you to feel better. The normal TSH range is 0.3 to 3.0 by the way. Some labs haven't gotten the news about the new normal range and are still using the old one which says the upper end is 5 or something. Most doctors use the TSH as the gold standand for starting treatment even if you have all the symptoms. Some are still in the dark ages and won't start until your TSH is over 10 (that was me 30 years ago). Find and Endo who is up to date or try to educate yours. Good Luck.