This could very well be it!

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This could very well be it!

Postby javens on January 23rd, 2003, 6:48 pm

Hi,
I had a thyroid sonogram and uptake today as well as the results to some more blood tests. They all suggest Hashimotos Thyroiditis(which my sister also has). My thyroid is inflamed and my blood tests showed over 70 antibodies!(normal is less than 2) My Nuclear science Dr. specializes in thyroid stuff. He said that he's almost completely certain that this is causing my sx's. He's seen many people over the years with the same complaints and this was their problem as well. He also said that it's common for thyroid diseases to not show up until months after the sx's start. He noticed my tremor(when he had me hold out my hands)and said that that and my twitching, diarrhea, fatigue, aches, pains, exercize intolerance were likely caused by this. He said that it would be extremely unlikely for me(a 22 yr old) to develope all these sx's and then a totally unrelated thyroid problem.
I sure hope that this is it!
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yippeee I hope this is your answer!

Postby reneeintx on January 23rd, 2003, 7:42 pm

I also have a screwed up throid. I have my first neuro appt. Feb 13. I will ask about that hashimotos thyroiditis. Any way hope you are feeling better soon.
A BIG HOWDY from your southeast neighbor in Houston :D
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Postby Craig on January 24th, 2003, 10:21 am

Count me in for Hashimoto's Thyroiditis. I've been on Synthroid for almost 2 months now and seem to be noticing a slight improvement in my symtpoms.
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Postby sarah on January 24th, 2003, 2:05 pm

My thyroid is also screwed up. I've been on levoxyl for years (.175) and somehow the Dr. prescribed the wrong dose, .3, almost twice the amount I had been taking. This went on for a year, until I finally caught it. My Dr. started me out at a very low dose, grandually working me up to my old dose, .175. I've been at that dose for one month. Can't say I notice any improvement in the twitching, but I've heard that it takes a while for the medication to work.
Sarah
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crossed finger for sarah and I

Postby reneeintx on January 24th, 2003, 4:24 pm

I hope this is the answer for you and me. My anxiety level is on overdrive 24/7. I''m so scared. It's so scary twitching and not knowing why. I'm afraid of what's waiting around the corner for me. Impending doom nipping at my heels. It just frightens me because someone on another forum had an emg that showed everything was okay and they were still feeling bad. Had 2 or 3 more emg's and finally a dx'd als. Maybe this is the exception. Hopefully not the rule. I pray everyday these symptoms will go away as quickly as they started.
good luck!
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Postby kim on January 24th, 2003, 6:59 pm

Hey All!

I was diagnosed with hashimoto's thyroiditis almost 30 years ago! I was never on any meds until last August. I already had eye twitching, but whole body twitching came exactly 2 weeks after taking synthroid. My doctor said there was NO WAY possible this was thyroid related! WHATEVER!!!!!!!!

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Postby javens on January 24th, 2003, 11:30 pm

Rene, where did you hear that story??? That's unlike anything that I've ever heard. If the EMG was done right and was performed on the muscles that were twitching then it WOULD have picked up the "muscle death".
In ALS the muscle is twitching because it's dying not the other way around. Also, it is nearly always the case that a person with ALS has profound, progressive weakness before they ever have any twitching.
As the Neuro's on Medhelp have said time and time again-"twitching without weakness and atrophy is not ALS". We've all been terrified of ALS. It's a terrible disease. I think everyone on this site has been scared at one time or another about ALS. No one has turned out to have it.
Another thing, a Neurologist at the Cleveland Clinic(one of the best nerology programs in the country) was asked the following question:
Q-
"My question is, do people with ALS also experience eye twitching? I have always heard that eye muscles are spared, and since fasciculations are supposed to occur in
muscles that are weak, would eye twitching tend to indicate a likely benign condition?

Thank you for your time."
His Answer-
"Eye twitching is not a feature of ALS, you seem to have some form of
benign fasiculation syndrome, which may occassionally involve eye muscles.
The absence of objective weakness or reflex abnormalities in the
fasiculating muscles would strongly support the probability that this is not ALS.
I think your best option would bve to obtain a referral to a neurologist
and have an EMG which will clarify this question beyond any doubt."

Try to relax. See a Neuro..it will give you peace of mind. Try not to look at too many health related sites. It will onle increase your anxiety and make you think that you have every disease in the world.
-Javens
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Postby javens on January 24th, 2003, 11:33 pm

Kim- I think you know what's causing your twitching.
You should probably see another Dr. it's just too weird that your widespread twitching would start two weeks after starting synthroid. I wonder if maybe you took too much???
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Javen and kim

Postby reneeintx on January 25th, 2003, 3:34 pm

Javens, I was going through all the old posts on that neurology forum. You know the one cuz I've seen you post there. You know that guy there named kstone. It was in an old post of his. Maybe I read it wrong. When I'm upset I read things fast. I need to catch myself and slow down. You are right about most likely bfs. I'm holding on to that that with white knuckes.

Kim, I think there is something to this synthoid+twitches thing. Why did my doctor call after I had blood test and say too much synthroid detected. She said this could be the cause of my twitching and if it is it will take away to get out of my system. If it's not I guess I will be thrown into this bfs oblivion with everyone else. You know this reminds me of a haunted house I went to a while back where you started out in this big round room with alot of doors and you had to find the right one to get get out. Wandering around in the big main room was this insane looking clown(bfs)riding your heels and directing you to try another door. :?
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Postby kim on January 25th, 2003, 7:33 pm

Hi Rene and Javens!

I have an appointment to get a second opinion on the 10th of feb. It was the soonest I could get.

I began the synthroid in August 2002, but the eye twitching started in June. The over all body twitching came 2 weeks after synthroid, and I immediatly stopped taking it. I had bloodwork done 3 months afterward, and all levels were within normal ranges with the exception of my TSH which was borderline hypo. I did not take any more medication for the thyroid since August, yet sx's persisted. I began taking Armour (an organic form of synthroid - actual thyroid hormone taken from a pig) last week to regulate my thyroid levels since the numbers went from borderline to definite hypo as of last week. So far, nothing has changed with regard to my sx's.

I would LOVE to believe this is the answer, but the jury is still out.......I'll keep you all posted, and hope you'll do the same if you find any answers!

Wishing you peace!

Kim
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Postby javens on January 26th, 2003, 3:11 pm

Rene-
I went back and looked at Kstone's posts. If you read them carefully, you'll see that on every one of his EMG's was abnormal in some way. The Dr. were just too reluctant to give him the ALS diagnosis because it's basically like a death sentence. Even his first EMG showed abnormalities though. He also said that his primary symptom was weakness. He did'nt even really notice the twitching. The Dr. had to look hard for the twitches. He said that "ALS twitches are hard to see".
I hope that this helps some!

Kim-
I hope that thyroid is what's causing your twitches! Wouldnt that be great.
I don't want to get my hopes up but it sure would be nice. Craig has Hashimotos(like I do) and has the same sx's. He and I are both 22. It would be very weird if we had several diffrent medical conditions(twitches,aches,pains,exersise intolerance, tremor AND a suddenly wacked out thyroid etc..)that all started at about the same time, with different causes.
I hope that your new Dr. will get to the bottom of this. I can't get in to see the endo until march but I have a follow up with my neuro next week.
Also, I've had eye twitches for weeks at a time way before the "all over" twitches started. I taught K-8th grade music therapy at a school for challenged kids(autistic, add, adhd etc..). It was very stressful and for about 2-3 weeks I had an eye twitch. That was 2 years before this stuff started. Who knows? Let us know how everything goes.
-Javens
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SETTING ME STRAIGHT

Postby reneeintx on January 26th, 2003, 4:07 pm

Thanks for looking up the posts. It be honest I didn't want to read them again because my heart will start palpatating. Frankly Keystone scares me because he is the real deal. I read some other old post that day and some people were mad at him for scaring people.
You must have a big heart to teach music therapy to children. Children with those conditions make it a very challenging job to endure. I had a friend who had an adhd son and he frazzled her nerves to the max. She had to go to parenting classes to cope with his neverending mischeviousness and misbehaving. I would guess music therapy helps them concentrate and calm down.

Hope you get definite answers on your symptoms.
Renee
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SETTING ME STRAIGHT

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