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Karin Joy

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I haven't been here since January - I have Hashimotos which is a thyroid autoimmuine diease, back in December my Endo told me he though I had ALS, due to an elevated CK level and muscle weakness. I have seen two neurologists, one being an ALS specialists, both saying 99.8% sure I do not have ALS. I am so weak in my left leg and arm, and have the constant twitching in that leg.

I am a little scared right now, because I just read about diagnosing ALS it says

"blood and urine studies, including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24 hour urine colleion for heavy metals -

Does this mean there is a link between thyroid and ALS? Am I reading into this?

Please help!:confused:
 

Al

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Hi Karin. There has been no proven link between thyroid problems and ALS. You should listen to the doctors and quit trying to diagnose yourself on the internet.
AL.
 

Karin Joy

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Thanks Al - You just made me cry - I noticed that on the ALS website that was not on there before - I was wondering if that is something new.:-D

I just have been dealing with this for over a year now, and just don't feel well!
 

Al

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What are you referring to about the ALS website? Sorry if I made you cry. That is never my intention.
Al
 

wright

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Hello Karin

The reason they determine thyroid hormone levels while testing for ALS, is because having low thyroid hormone levels can make you feel weak, which is a symptom of ALS. Therefore, if you are weak (and you are) and you have low thyroid levels (and you do because of your Hashimoto disease), then that is probably the reason. In other words: they test thyroid levels to rule that out as a possibility for weakness.
Bottome line: feel good about what the ALS docs told you.

P.S. Twitching can also be caused by thyroid problems.
 

crystalkk

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hello karin,

Relax, those are some of the things that they need to rule out, because they can mimic als.
 

Karin Joy

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Thank you so much for all of your responses! I had never seen that part in the ALS diagnosis before, it just scared me a little thinking that ALS is related to thyroid disorders. But thank you for clearing that up for me! So, it more a process of elimination.

It has been such a roller coaster of a year. I started with the twitching back in April of '07, did the usual internet search and twitching is all related to ALS. I had no idea that your thyroid can cause so many problems. I have been hypo for years, but started to have real problems with it in April '07. It is really hard to find a good endocronologist. All of the Endo's I have seen keep telling me muscle twitching is not related. I have had an elevated CK for a year, sometimes it has gone as high as 323 (normal being under 170), to being totally normal. So, in December my new Endo just came in the room and said your CK is elevated again, and your thyroid levels are almost in the normal range, there is no reason for your CK level to be elevated, I think that you may have ALS. So, off I went to the ALS clinic, mind you I have two young daughters, crying everyday. I have now had two EMG's, one NCV and they have both come back normal. All strength tests normal. It just seems as though after I have my appts, some other crazy muscle problem happens.

I just fear that one day they are going to say, oh we are sorry but it is ALS.

Thank you all for your support and for listening.


Karin
:)
Al - you made me cry in a good way!
 

siuska

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t levels

Hi,
i want to reassure you that if your thyroid hormones are messed up, it can cause parasthesias, cramping, twitching and weakness...instead of a neuro, you need to find a really good endo...i have noticed that many thyroid levels are slightly low, yet the docs say "fine"...so get an endo who will treat the symptoms and not the numbers...also, you said the source was Hashimotos? Make sure there is no pituitary involvement....this would be signaled by High or Low TSH....and if it is pituitary, other hormones could be affected...every hormone is affected by the action of another...you can't correct thyroid without the involvement of sex hormones, adrenals, yada-yada...so when they check your T levels, make sure they do a whole panel on you...
 
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