# Muscle Weakness: Has anyone else experienced this? Is it a Hypo Sign?



## RH789 (Jul 30, 2012)

Has anyone else experienced muscle weakness?

Did optimizing thyroid medicine help the muscle weakness, and if so how long did it take to notice an improvement?

It's my biggest complaint.

I feel like no one complains about muscle weakness. I have little hand weights that are 5 lbs and I can barely lift them. They feel like 10 lbs.

Can anyone relate? :sad0049:

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My labs off medicine are:

TSH 3.06 (Range: 0.40 - 4.50 )
Free T4 1.1 (Range: 0.8 - 1.8 )
Free T3 3.3 (Range: 2.3 - 4.2 )


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## CA-Lynn (Apr 29, 2010)

Are you taking statins by any chance? A number of drugs can cause weakness, but I cannot say that I've experienced it as a result of any thyroid medication. How far can you walk?


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## Keba (Aug 11, 2012)

I'm not on meds but I do experience muscle weakness depending on what I call "flare-up's".
Everything I normally do becomes hard, and I fatigue much quicker. I just don't push it during those times but I do continue to work out or I feel much worse.

I honestly don't know if it's caused from hypo or hyper.


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## Andros (Aug 26, 2009)

RH789 said:


> Has anyone else experienced muscle weakness?
> 
> Did optimizing thyroid medicine help the muscle weakness, and if so how long did it take to notice an improvement?
> 
> ...


Why are you not taking any thyroid meds?

Here is some info; the answer is yes......................to the muscle weakness. I can relate. I had prolapse of many bodily organs.

Myopathy from hypo
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1010480/

Bear in mind that there are many many reasons for muscle weakness.


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## RH789 (Jul 30, 2012)

I am on no medication (statins or otherwise). I take vitamins to make sure my nutrients are up high enough and have optimal levels of Vitamin D, B12, etc.

I do NOT know what to do  I have muscle weakness. I have been tested for everything under the sun and everything comes back fine. I do not know if I should be on thyroid medicine with these labs (taken 12 weeks after stopping medicine):

TSH 3.06 (Range: 0.40 - 4.50 )
Free T4 1.1 (Range: 0.8 - 1.8 )
Free T3 3.3 (Range: 2.3 - 4.2 )

What should I do? I never really felt much better on medicine. When I was put on too much medicine, making myself hyper, I had a thyrotoxic myopathy:

TSH 0.15 (Range: 0.40 - 4.50)
Free T4 1.3 (Range: 0.8 - 1.8) 
Free T3 3.8 (Range: 2.3 - 4.2)
Reverse T3 21 (Range: 7-24)
RT3 ratio: 18.1

I had a subacute thyroiditis in 08/2010. I don't know what to do.

Should I get on thyroid meds? Stay off? My biggest complaint is muscle weakness and also that my leg hair isn't growing (which shows me something is off in my body). I want to be more physically active, but cannot.

What would you do, if you were in my shoes?

My endo says he'll support my decision either way (whether I get back on meds or stay off them). I had an FNA biopsy which showed "scant chronic lymphocytic thyroiditis" but that is likely from my thyroiditis. I have never tested positive for TPO, AG, or ANA antibodies.

Thank you.


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## RH789 (Jul 30, 2012)

Andros said:


> Why are you not taking any thyroid meds?
> 
> Here is some info; the answer is yes......................to the muscle weakness. I can relate. I had prolapse of many bodily organs.
> 
> ...


I was not on medicine for the past 14 weeks because I felt horrible on medicine (hyper). Also, I have been on and off medicine like five times and I never got "off the couch". I am realizing the reason why I am not off the couch is because my muscles are too weak. I also developed a thyrotoxic myopathy, as discovered by the Director of Neuromuscular neurology at a major city hospital through an EMG exam.

May I ask, when you had your muscle weakness/prolapse - what was your TSH and Ft4 at that point? Do you remember? My levels aren't "that" bad, right? You probably had really horrible lab numbers that obviously were causing it. Why do I have such extreme symptoms (sitting on the couch all day, everyday) when my labs aren't very extremely out of sorts?


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## bigfoot (May 13, 2011)

Your levels aren't "that" bad, but that's pretty subjective and each of us is different.

Have they checked other hormones, too? Cortisol, DHEA, testosterone, estrogen, etc.


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## RH789 (Jul 30, 2012)

bigfoot - Thanks! Yes, they have checked all of those, numerous time in various ways. Always pretty "normal".


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## staceyk111 (Aug 15, 2013)

My initial problem with thyroid was demonstrated in EXTREME muscle weakness. Long story - had Gastric Bypass surgery - lost 100 pounds and suddenly experienced muscle weakness, high blood pressure, hi heart beat. The doctors were confused and said it was malnutrition. The GBS doc put me in the hospital and thru a scan they discovered my Graves disease. It did not come thru on blood tests because the on-set was so fast/or my family doc did not recognize it. Turns out - I was in Thyroid Storm - lost 1 pond each day for 60 days. I almost died. My husband was picking me up from toilets/chairs because I was so weak. Even the Thyroid specialists at a major teaching hospital had never seen such muscle weakness - they thought I had a stoke. After meds (methimazole) - I was moving again within 2 weeks. My muscles are still weak, but I can function.


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## RH789 (Jul 30, 2012)

Wow, staceyk111 that sounds like a nightmare. Do you ever feel like you will regain muscle strength? In what time frame, could it happen? Do you think the muscles just need to "heal" and rebuild? I am worried because I have been on medicine, but in all honesty - the muscle strength never returned, sadly.


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## Crystal517 (Aug 9, 2013)

Yes I noticed my neck muscles ache. Like I strained them. Laying down picking my head up made neck muscles hurt. Didn't know it could be from Hypo??


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## RH789 (Jul 30, 2012)

Andros said:


> Why are you not taking any thyroid meds?
> 
> Here is some info; the answer is yes......................to the muscle weakness. I can relate. I had prolapse of many bodily organs.
> 
> ...


Andros - thank you for the help. May I ask:

(1) Was the myopathy from being hypo or hyper?
(2) What was your TSH and Ft4 level when you had the myopathy?
(3) What is your TSH and Ft4 level now and what thyroid medicine do you take?
(4) How long did it take from when the myopathy existed and you changed meds before you were able to move about freely and regain muscle strength?

Thank you!


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## Andros (Aug 26, 2009)

RH789 said:


> I am on no medication (statins or otherwise). I take vitamins to make sure my nutrients are up high enough and have optimal levels of Vitamin D, B12, etc.
> 
> I do NOT know what to do  I have muscle weakness. I have been tested for everything under the sun and everything comes back fine. I do not know if I should be on thyroid medicine with these labs (taken 12 weeks after stopping medicine):
> 
> ...


First and foremost; see if you can get these tests plus an ultra-sound.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

The above should give you a sense of direction re the decision-making process. You cannot make decisions w/o sufficient information and confirmation of facts.


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## Andros (Aug 26, 2009)

RH789 said:


> Andros - thank you for the help. May I ask:
> 
> (1) Was the myopathy from being hypo or hyper?
> (2) What was your TSH and Ft4 level when you had the myopathy?
> ...


I did not gain back my muscle strength until I got treated for Graves' which was RAI to knock that bad girl out.

Prior, I had no such tests as I was told it was all in my head. Bleck!


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## RH789 (Jul 30, 2012)

Andros, thank you: TRAB and TSI have been tested. Multiple times. Always came back "negative".

I do NOT know what to do. I am not "suffering" but I am still on the couch. Then, I think, well maybe it's because you have gained 50 lbs and that's why you're on the couch. Then, I go and lift my little 5 lb hand weights and do simple arm exercises and they feel like 10 lbs. That's not normal, right?

Today I felt like I was a bit achy. Also, my hands are dry. I am relatively young, they shouldn't be dry. And, my leg hair is not growing in very fast.

Those are indications I should probably go back on meds, right?

Also, does this make ANY sense:

When I went off thyroid hormone this time around, I was hyper. And felt awful. Then, I got off meds. A couple weeks later, I felt AMAZING. Like, almost called my doctor to tell him how amazing I was doing, kind of amazing. But, I thought, if I am "really" truly amazing I will still be amazing in a few weeks and I can tell him then. Then, I stopped feeling so amazing.

Don't you think that maybe I hit my sweet spot when I was feeling amazing? Does that make any sense?


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## Velcro (Jul 26, 2013)

Do keep in mind that just not doing anything "being on the couch" will cause muscle weakness. When you first start back doing activity, your muscles are going to feel weak due to non-use as well.

When my Linear Morphea attacked my left arm, and we didn't know what it was, I babied that arm because of the pain. I was even doing it subconsciously. After about 1 1/2 years of babying it, I lost 50% of my strength in that arm. I had to start using it more and using some weights nightly to gain some of my strength back. I could barely even lift a 1 lb weight 10 times in a row for the longest, but I kept doing it and eventually gained back most of the strength.


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## bigfoot (May 13, 2011)

Totally agree -- it's a vicious circle. You feel fatigued and weak, so you rest, and don't feel like doing anything. Then you feel even more fatigued and weak. And so on...

The trick is finding something you are able to do, even just around the house, and go for it whenever you can. For me, my goal was (and still is) being able to at least do a few chores or yard work, or walk the dog. Heck, even going up and down the stairs can be exhausting, depending on the day. I use all of that as my measuring stick for which direction my healing is going.

Eating healthy has a lot to do with it, too. I have no idea what your nutrition is like, but try to avoid the carb-heavy, sugar-heavy foods. Same goes for junk food, fast food, and processed foods. That can be easier said than done when you're really fatigued -- because the last thing you have energy or brain power to do is cook a fancy meal. So it doesn't have to be fancy; maybe salads, BBQ'd meat, boiled potatoes, yogurt with granola, celery with peanut butter, etc.


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## staceyk111 (Aug 15, 2013)

Well...My muscle strength has returned to the point that my hubby no longer needs to pick me up...a story - - During my recovery, I carried my cellphone everywhere. We went shopping together at a warehouse/big box store...I had to go to the bathroom. I was unable to rise from the toilet. Called hubby...he came to the ladies room, shouted if anyone was in there but me, burst into the ladies room, picked the lock on the stall with a hand-knife, picked me up off the toilet...ran out of the ladies room as soon as I could stand. My hero! We have been married 35 years. My muscle strength is medium, but I have found that if I exercise/walk DAILY, it improves. Yes - in my experience, you can rebuild the muscles if you work at it daily. My coordination sucks - I am a total cluts now, but I can get myself up and walk around. I am no longer the disco dancer that I used to be, but as long as I can walk and get around, I am happy.
Can you work on exercising/walking somehow?


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## staceyk111 (Aug 15, 2013)

I have regained muscle strength to the point that I can function, walk...but I have lost my coordination. I used to be a dancer - now I have trouble with coordination and I can't keep a beat. If I exercise (walk) it gets better and my muscle strength improves. I have to take a train daily to work - it is a high step. I really have to work at stepping onto the train with my arms and legs...I watch others just step on with their legs. Lately I have been having trouble with Vertigo at my workplace - - only there. Many elevators and fluorescent lights. I have to talk to my Endo doc about this. 
Tell me about your weakness. I am 55 years old, female, Scottish/Italian DNA..


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## staceyk111 (Aug 15, 2013)

GREAT story to tell about muscle weakness - - During my Thyroid storm, just as my docs started to give me Thyroid meds...My hubby and I went to a warehouse club/store (BJ's) to shop. I had to go to the ladies room - took my cellphone thank goodness. Got stuck on the toilet - I could not rise from the toilet my legs were so weak. I called him on my cell. He came to the Ladies room door, knocked, shouted if anyone else was in there but me, no reply, entered the ladies room, had to pick the lock on the door to my stall with a pocket knife, ran in, picked me up off the toilet, ran out. I was saved! I have been married to this guy for almost 35 years - he is my knight in Shining Armour!


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## beebee (Aug 26, 2013)

This is an interesting thread, before my diagnosis I had been feeling weak, particlualry on my left hand side. I had strength and mobility but just didn't feel like my muscles wanted to go with it, if that makes sense.

Sometimes my limbs also felt heavy.

I've experienced this before after a bad reaction the the birth control pill. I'd been subclinical for a while, then hypo but with no symptoms, this time though I knew something was wrong. I was also getting major anxiety out of nowhere and feelings of numbness in my face.

I went to the doc and of course they said, oh it's anxiety. Till my results came back and they immediately put me on thyroid meds. Since then the anxiety disappeared together with the weakness, although I do feel it every now and again, but not as bad. Exercise definitely helps - whether it's taking my mind off it or what.

I also trawled the web looking for anyone else who had hypo with those symptoms, and there's some indication that it is part of this disease, although it's also an anxiety thing too. I'm in both buckets I think.

Wishing you the best.


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## staceyk111 (Aug 15, 2013)

BB,
I am Hyper - Have also had weakness, vertigo, heavy feeling in limbs, etc. Extreme muscle weakness.


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## needanswers (May 4, 2013)

The sign that finally brought me to the doctor was severe muscle weakness. I couldn't get off the toilet, was practically crawling up the stairs, and having my kids pull me up off the couch. My doctor confirmed weakness through manual muscle testing and was sending me to a neuromuscular specialist when lo and behold, thyroid came back as the culprit and I got a Grave's diagnosis instead. Two months after being on ATD my muscle strength was almost back to normal, and now at three months, I don't really notice any muscle weakness... LOTS of hair loss, but feeling strong.


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## staceyk111 (Aug 15, 2013)

I forgot to mention - if I fall, I cannot get up on my own. My leg muscles are still weak. Thank goodness my family/friends/co-workers know and they just pick me up.

I do not think doctors have investigated muscle weakness related to Grave's disease enough - probably because it is unusual. When I was admitted to Temple University Hospital, Philly, PA in 2008 (a MAJOR university/teaching hospital) even they were questioning the muscle weakness. To their credit, they wanted to investigate- but I did not have time for that. I found a wonderful endocrinologist by accident on HEALTHGRADES...Karen E. Agersborg, DO and she has saved my life!


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## staceyk111 (Aug 15, 2013)

Info - I have had female hormone problems since puberty. Skin issues, acne, irregular menstruation, unable to conceive...at one point in my teens...I was investigated for a pituitary tumor. I had a thing called Sudo-Tumor seribri in my early 20s - like a brain tumor...but false. Lots of tests. I think this was all thyroid related.


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## staceyk111 (Aug 15, 2013)

Just a quick note - because I have had GPS - I am supposed to drink protein every day. I noticed a great improvement in muscle strength when I was drinking this


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## staceyk111 (Aug 15, 2013)

Are allowed to post doctor's names here?


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## Prudence (Oct 30, 2012)

I have baaaaddd weakness when my thyroid is too hyper or too hypo. Climbing my stairs can be a nightmare. Even simply taking a shower and washing my hair will tire my arms.


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## staceyk111 (Aug 15, 2013)

A good thing is drinking PROTEIN!! I know this from Gastric Bypass Surgery - I had to drink this after the GSP surgery - - this REALLY helped to rebuild my muscles.


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## JanicenotJanis (Aug 28, 2013)

staceyk111 said:


> I forgot to mention - if I fall, I cannot get up on my own. My leg muscles are still weak. Thank goodness my family/friends/co-workers know and they just pick me up.
> 
> I do not think doctors have investigated muscle weakness related to Grave's disease enough - probably because it is unusual. When I was admitted to Temple University Hospital, Philly, PA in 2008 (a MAJOR university/teaching hospital) even they were questioning the muscle weakness. To their credit, they wanted to investigate- but I did not have time for that. I found a wonderful endocrinologist by accident on HEALTHGRADES...Karen E. Agersborg, DO and she has saved my life!


Hiya Stacy. Don't know if you can post names or not? But glad you did. In the same area. Went to the other Big Hospital TJ The endo doc kinda dismissed me because my #'s weren't bad enough to treat. I am trying another Endo doc on Monday which I have an appt with already but if she doesn't help I'm going to give your doc a Jingle. I have muscle weakness too along with atrophy of my muscles I feel like there is a little monster inside me eating me from the inside out. I also get this feeling not like anxiety.. well kinda but its like this totally unprompted I could be sitting on the couch petting my puppies : you know when you are so excited when you are about to do something like board a plane to a vacation or watching a very action packed movie, your muscles kinda tense up and your insides are all excited! whoo hoo! but no release until the muscles finally release then Crashapaloza! I'm wiped out for a couple hours after that. Loved reading your posts  Thank you!


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## staceyk111 (Aug 15, 2013)

J - the sensation is like a hot flash from menopause - I understand. I flush, get hot, hyperventilate, increased heart rate...Recently I have been having a Vertigo kind of reaction with elevators and fluorescent lighting. In the past, I have been treated for panic attacks - maybe this is thyroid related?

My doc is the best - I drive 40 miles to go to her! I have been to others - but Karen is the best - most understanding.


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