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1150774 tn?1310406231

Hashi's and MOTOR nerve damage???

Hello Everyone.  I've been a 'lurker' here from time to time.  Thanks to all who have helped me better understand my Hashis and provided much needed support for all the 'unknowns'.  Thru what I've learned here, I've found better doctors and better treatment than I ever would have alone.  I wanted to share that my natrual path (5th MD I've seen to treat this) also started me on Low Dose Naltrexone to help with the Hashi's because it seems to help improve all sorts of auto immune diseases.  So, feel free to ask me about that anytime. :)  However, I finally decided to ask a question myself, as I can't seem to find any posts specific to MOTOR nerve damage from Hashis (I have NO sensory damage via EMG).  I have the fasiculations and cramping, but because of MOTOR nerve damage; I was diagnosed with ALS two years ago and have been having symptoms for 4 years.  I haven't progressed as fast as most people with ALS.  In fact, I am holding my own with muscle weakness primarily in my lower extremities and bilateral drop foot.  I do have some weakness in my hands and shoulders.  The ONLY thing any doctor anywhere has been able to find is the Hashi's (diagnosed 6 months after "ALS" because I had a TSH at 7 (5.5 reference high) and requested the MD check for the antibodies-thanks to the posters here!.  Nothing else-and I've had the "Million Dollar Work-up".  SO my question:  Has anyone ever heard of this purly motor neuron damage caused by Hashi's?  Does anyone else have a similar affliciton?
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Avatar universal
Do you have better answers? I'm in a similar boat. I have zero IgA .  The peripheral nerve pain and sensations shoot through me constantly.  I can't take a shower, cook or drive without them.  I fumble with things in a way I didn't used to. I will retain ridiculous amo if water, lose it, and experience horrific IBS pains.  Endo started me on a low dose of tirosint because I hit "normal" ranges. Most of my hair is gone.  I'm constantly short of breath and my joints are extremely swollen. I have random white patches on my skin a/k/a vitaligo .  I am a 34 yo white mother of two desperate for a knowledge transfer.  I have soent my life as an active participant in my chikdrens' live and as an endurance athlete in my own.  I've GI e firm ramming marathons to shirt if breath standing. Is there away out if this way of life???   Joanna
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Avatar universal
Hi :) if you still would like to talk, i can in box my number to you.
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Avatar universal
Hi,  I really am interested in your story, and would love to talk to you.  I am new to forums in general, so i hope i do this right.  I am experiencing the same issues as you, but sort of opposite.  I am being given the "probable" ALS diagnosis, but pressing several nuero's to give further testing.  right now my natualpathic dr. just came back from a seminar that mentionrd Hashimotos and its possible connection to muscle atrophy and weakness, he thinks i may have it, and it is causing the "ALS' progression.  I would love to share with you all the information i can somehow.  I hope you respond.  Lisa
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Avatar universal
i have no i dea, BUT i too have a lot of the same symptoms with hypothyroid. im newly 30, low thyroid..what sent me to the doctor was twitches all over my body, neck involuntary movements, percieved weaknees in upper arms and thighs, shaking of my arms and thighs if i lift them up unsupported...just offering an ear if you ever want to talk:) best of health to you :) ***@****
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Avatar universal
If you really feel that a small increase in Armour might be helpful for you, then you might consider having a conversation with your doctor about your FT3 and FT4 levels.  Just because they are in the so-called "normal" range does not mean they are adequate for YOU.  

Over 8 years ago the AACE recommended that the range for TSH should be revised from .5 - 5.0 down to .3 - 3.0.  The reason for the change was that they had come to the conclusion that there were a lot more hypo patients than the 2.5 % they originally assumed when they established the range limits.  When they purged their data base of suspect hypo patient data, and recalculated limits, the range changed significantly.  The reason I am taking your time with all this is that the ranges for FT3 and FT4 have never been revised, yet they were based on the same faulty assumption of 2.5% hypo patients.  Having a background in statistical analysis, I have previously calculated that if the FT3 and FT4 data bases were similarly purged of suspect hypo patient data and the ranges recalculated, they would essentially be the upper half of the current ranges.  

I think that the above is why we hear from so many members with FT3 and FT4 in the lower end of the range, yet they still have hypo symptoms.   A discussion about this might make your doctor more amenable to an increase in your meds, to relieve your symptoms.

Further, a copy of this link might also have some influence in the doctor's decision.  The link is to a letter written by a good thyroid doctor for patients that he is consulting with from a  distance.  The letter is sent to the PCP of the patient to help guide treatment.  Note the clinical approach, rather than just relying on test results.

http://hormonerestoration.com/files/ThyroidPMD.pdf
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1150774 tn?1310406231
Thank you gimel, LazyMoose and kl42!

i do appreciate the answers!  They do give me hope.  I am currently on Armour 180 mg, have been on the generic Synthroid, then Levoxyl, then added Cytomel (I've been doing this for almost 2 years) Started really low dose, steadly bummped up, then added the Cytomel, then finally went to a natural path who switched me to the Armour.  He's not worried about my TSH so much (it is now very low) but he's also not worried about my Free T4 being on the bottom rung of normal.  Free T3 is right in the middle of 'normal'.  I wish he'd bump up the Armour just a bit to see if it helps.  I have NEVER felt any hyper sxs, that I am aware of (palpatations, manic, etc)  In fact, sometimes I sleep pretty poorly, take my Armour and fall right back asleep-and it's the BEST sleep I ever get!! So I don't think I'm over doing the thyropid replacement-but who am I?? No Doctor, that's for sure!  My last TSH was .02 with a reference range of .4-4.5.  My Free T4 was 1, reference range .8-1.8 and Free T3 was 3.3, reference range 2.3-4.2.  

My neurologist completley agrees sensory neurons are affected by the thyroid and feels hyper thyroid can cause purely motor damage-but he won't budge on hypo causing motor damage.  It's crazy!  How can it effect on one end of the spectrum, but not the other? I do have the fasics/twitching, and axonal damage on EMG, accompanied with profound lower extremity weakness and slight to moderate upper extremity weakness.  

I just really feel we don't know the whole story when tha antibodies are involved.  We don't get a clear picture from the labs, but the doctors don't want to explore that problem.  What the HECK?, I say!!  Why don't we matter???  Is it because the pharmaceutical companies can no longer make money off us?  I hate to think so negativley, but something sure isn't right!

Thanks, again for keeping my post alive on the thread!  I have 3 kids, work part time and try to keep up with my housework (not to mention 'battle mystery neurologic disorders' :).  I wasn't able to get back to the post, I hope to do better in the future!

Much Appreciation,
Julia
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535882 tn?1396576685
you can definitely get neuropathy from low  thyroid levels or high levels . such as twitching tingling,  sensations,   real annoying!
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798555 tn?1292787551
"neuropathy and the Hashi's are completley unrelated"


I dont know if there is really a way to say one has neuropathy or not, but I will say I and others here have had a feeling of what some say is like neuropathy - and it was from low thyroid levels. Tingling pins and needles sensations and hot feeling in feet / hands.
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Avatar universal
You are into an area foreign to me, but I did want to push this post back to the top of the Forum pages and make sure you got an answer.  I also wondered what the doctor has prescribed for your hypothyroidism that always accompanies Hashi's.  Also it might help if you will please post your latest thyroid test results and their reference ranges shown on the lab report.  
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1150774 tn?1310406231
and of course, my neurologist thinks the neuropathy and the Hashi's are completley unrelated.  He even said to me, if the nerve damage was caused by the Hashis thousands and thousands of people would have nerve damage too-and they don't, so Hashis ISN'T my problem...Well, I know enough to at least question his rationale on this one...
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