Thank's for your response. I get twitches in my eyelids also,but just wondering if anyone experienced twitches throughout body ,due to thyroid problems. I have had all vit 's checked and are all normal. I am on anti anxiety drug for neuropathies and it might be side effect from the drug,just not sure.
I suspect that muscle twitching not only is a symptom of a thyroid problem, I suspect it is more common than endocrinologists realize. Yes, I have had muscle twitching, sometimes fierce twitching, that I am sure was caused by my hypothyroidism. I am sure of it because of the way it co-occurred with other--more typical--symptoms of hypothyroidism and by the way it has disappeared as my thyroid problem has been brought under control.
Moving beyond just my experience, I have been impressed with how often I have seen someone at this forum mention muscle twitching. It is frustratingly difficult to know whether a symptom is or is not a side effect of a drug, but it seems as if your thyroid problem is at least a good possibility as the cause of your twitches.
I've been off my ATD (methimazole) for about a five weeks and have been dealing with fierce twitching all over ... and myoclonic jerks when trying to fall asleep. I also have burning sensations throughout my extremites, facial numbness, tingling and back pain (between my shoulder blades).
I am overwhelmed. My nuerologist doesn't take me seriously because my brain MRI came back clean (I have an EMG scheduled in 10 days). I am not sleeping at all. I have two endos who insisit it is not my thyroid because my blood work comes back normal. The nuero says if the EMG is good then it is probably my thyroid???
I'm at a complete loss and feel like I am losing my mind. I also started getting hot flashes at night. It's not menopause .. I'm only 41.
Yes I have had them also, also can actually sit there and see a nerve move here and there on my body. Also do any of you get problems in the mouth area to if so please explain. I get like skin peeling in my mouth and a friend of mine works for a oral surgeon and she said it is prolly my thyroid because it is a autoimmune problem.
Funny that you mentioned this b/c the last 2 days my left eye lid has driven me insane twitching. Was checking out at a store today and finally had to put my finger on it to make it stop so checker would quit looking at me like I was flirting with her! True story.
When I was both hyper and hypo had bad muscle twitching all the time. Still would at night if I didn't take Requip every night before bed. My numbers are normal now and it doesn't bother me as bad.
I too had the eye twitching!!! The one guy at work used to think I was winking at him!!! Thank god he is same sex oriented or I would have had a huge problem!!!
I also had twitches in my neck where for no reson my head would just turn slightly. That was weird especially when speaking with my boss- I think i was giving her a complex because she would finish her sentence and let me back to work!!!
I really feel for you. I have the same thing and My original endo that I went to said all symptoms were part of thyroid problem,and then when levels went back into normal range and I still had symptoms she said my symptoms could not be due due thyroid I have had mri eeg vep, every blood test and all normal. I know what we are suffering from is thyroid related. Did you read all of the testimonials on Msfergy's neuropathy poll? I have the burning ,not as bad as it was ,but stilll have it I have the twitching,numbness,blah blah blah... and I have had the jerking when falling asleep. You are not crazy!!!. Keep telling yourself thyroid ,thyroid, thyroid. It has to be. How long have you had these symptoms and what are your levels now ? were you hypo or hyper when this all started?
I've been hyper since I had my daughter (2 1/2 years ago). I developed mild proptosis in my left eye a few months ago and that's when we discovered it was Graves. I've been euthyroid since July 23, 2007. That's roughly when I stopped taking methimazole. Twitching, numbness, nighttime jerking all started around August 6th (about two weeks after I stopped my ATD). My last blood work was done on August 13th and all thyroid levels were in the normal range. I've been told it takes 4-6 weeks to show any changes in bloodwork, so I am getting new tests done by the end of next week.
I have tons of other symptoms that come and go (headaches, rash). Whether or not they are real or a product of my 24/7 anxiety remains to be determined. Has anyone out there experienced a rash from there tyhroid troubles? A few weeks ago, I had one so bad that I needed to go the ER. Now I just have a strange rough patch on my cheek.
I just wish I could find a doctor who would take me seriously. They all shrug off my symptoms. I'd love to know how they would sleep at night if their muscle were twitching involuntarily and their fingers and feet were jerking all night long.
Leanne's original endo was full of baloney in thinking that once all the lab test numbers were normal, all thyroid-related symptoms either were gone or else could not be thyroid-related after all. I agree with LJ: Just keeping telling yourself "thyroid, thyroid, thyroid," and know that your impressions about the cause-and-effect between your thyroid problem and your symptoms is right. All physicians who think in simplistic ways are wrong.
I am truly blessed in having an endo who does take me seriously. Tsimmu, I hope you have the option of continuing to look for a decent-quality doc. They are not easy to find. So much in their training encourages them to be arrogant and think that they know it all and their patients know nothing. There ARE endos out there, however, who do not question the accuracy of a patient's reports of what he or she is experiencing. I know, because I have that sort of endo, and I have a rheumatologist who is the same way. Both of them have said that: A) There is a LOT that the world of medicine does not understand, B) They as individuals do not, and cannot, know everything within their specialties that it is possible to know, and C) I am a highly accurate reporter, for which they are grateful. I made a one-page form of symptoms that I can fill out every day, once at the end of the day and once after I wake up, because I have to keep track of my symptoms in some way that is more reliable than my memory.
Since I keep a daily symptoms "log," I know I am not just imagining that my hypothyroidism is in some way involved in my problems with sleeping. The summer I had my 45th birthday, I began to have big problems with waking up in the middle of the night for no reason. Tsimmu, if you are not knowledgable about the perimenopausal phase of life, it would be a good area in which to do some reading. At the age of 45, when I was still slightly more than 6 years away from menopause, I had never heard the word "perimenopause." I wish I had known then what I eventually learned.
When I finally worked my way around an ignorant physician who did not want to give me any hormone medication until I had reached menopause, my sleep problems were "cured" wonderfully well by taking estrogen. Then four years ago, the same old problem crept back in, slowly but steadily. It was a mystery as to why it was happening, and it stayed a mystery until a few months ago. Now it has become obvious that problems with sleeping are a paradoxical (or contradictory) symptom of hypothyroidism for me.
If only the medication for hypothyroidism, which has made me feel much, much better in many ways, would be a complete cure for my sleeping problems. The medication has helped, but it is not a cure. I would lose my mind, I think, if I did not have my endocrinologist, who is highly supportive and a true health care ally. Rather than simplistically saying, "Well, if levothyroxine has not stopped the symptom, then the symptom cannot be coming from your thyroid gland," he says, "We physicians do not begin to know everything."
Before I sign off, I want to thank Dac and Teresa for providing a good laugh for the day. My muscle twitching is a symptom that does seem to have been cured, at least almost completely anyway, by levothyroxine. I have had times in the past, though, when I had a twitch so bad that I could see the twitching muscle jerking (one time it was in my forearm, near my wrist), and I thought I would scream if the twitching did not stop after going on, nonstop, for hour after hour after hour. Now I know that I should have been grateful. I was not have a twitch that make another person wonder what sort of message I was sending. We thyroid sufferers do learn to be grateful for even the smallest things!
Thank you, Leanne, for the happy Labour Day thought, although it probably is not a holiday wherever on the globe you are living...am I right? If I am, then I wish you a happy day, category unspecified.
I think we all make grammatical bloopers I know I do all the time!! that's o.k. we all know what each other is trying to say!! that is the main thing. Those darn twitches are so strange some days I have them on and off through the day,and I can actually see my muscle moving when they twitch. When they started I really had myself convinced that I had a neuro problem llike ms. Can really make yourself sick with worry about these symptoms. I will be 40 next year and I know that my hormones are starting to kick in big time,I am on a good vitamin regime and I am going to start primrose,around my cycle I could literally poke somebody's eye out if they look at me the wrong way. NOT GOOD. Jenny It makes me feel allot better knowing that you have had all of these paresthesias on and off for a long time and that they really have not progressed at all ,if anything they have become less frequent. Talking to you has really helped me cope,just knowing that maybe there is really hope that mine may lessen over time too.Thank you so much.
Thank you very much for your supportive thoughts. You know, you are right; as long as we all know what each other is trying to say, the bloopers do not matter. I often mentally make corrections on behalf of the writer (even people without a thyroid problem!) and do not at all mind doing so. I know that they do the same for me.
What you say about your muscle twitching rings a huge bell with me. It really is easy to make yourself sick with worry when you have such strange symptoms.
I was doing pretty well at not worrying until six years after my weird symptoms had started, when I provided an overview of them as I was getting acquainted with someone who turned out to be a really wonderful gynecologist. This was right after I had finished graduate school and moved to the Washington, DC area. The gynecologist referred me to a rheumatologist because of my muscle pain problems. The rheumatologist also was my primary care physician for several years (and also has turned out to be truly wonderful). When the gynecologist looked at the "catalog" of symptoms I had had in the past six years, he asked ever-so-casually if I had been assessed for a demyelinating disorder such as MS. He said, "Not that I think you have MS; you probably do not," but the expression on his face was not matching the reassuring words he was saying.
Wow, it was worry in a big way from that point forward. Then all of my "wiring" checked out just fine. Whew! As for my muscle pain, my rheumatologist said that the problem was recognized but "poorly understood." Since that time, which was in the spring of 2001, I have seen the rheumatologist regularly, mostly because he has been an extraordinary ally, provider of emotional support, and sympathetic listener when I just need to tell a physician how very stressful it is to have such weird symptoms coming and going. Until my thyroid gland's struggling became obvious, I was in very good health and highly energetic, and yet the way my body could produce the weirdest of weird symptoms was unnerving.
You are right, though. I have had the grab bag of paresthesias for a long time, and even in my most worried moments, I have to say that the symptoms have not progressed at all. In fact, you also are right in saying that they have become less frequent. Since this has been my situation for thirteen years, it seems pretty reassuring to you and to me both. Also, when I had the neurological assessment, I was checked thoroughly, and my nervous system and muscles were in tip-top health.
Let me add one more bit of reassurance, which comes from my rheumatologist. After I had known him for about three years, I was complaining one day that part of what gave me the creeps about my symptoms was the way they would come and go. It was different "neurological" symptoms at different times, and no rhyme nor reason to why they came and went the way they did. My rheumatologist at that time had been practicing medicine for more than twenty years. He commented that although he could understand how the "little bit of this; little bit of that; today the symptom bothers me for the entire day; tomorrow it is gone again" would give me the creeps, it was the aspect of my situation that most reassured him--as a physician--of there not being anything seriously wrong.
I cannot tell you what the reasoning was behind his comment, but I CAN tell you that my rheumatologist always "calls it as he sees it." He would not say that he saw something reassuring in my situation if he did not sincerely mean it. I can so count on him to be completely honest that I learned long ago never, ever to ask him a worried question unless I was fully prepared to hear any possible answer.
I hope that my follow-up comments have helped a little more. It is so unnerving to have the kind of muscle twitching you are having, where you can see the muscle moving as it twitches and where it is not a little twitching that happens a few times within the space of an hour and then it is gone.
If all physicians, including primary care physicians but also including endocrinologists, realized that what you and I have experienced may be far, far from rare among people with endocrine system problems, we could have our worries settled for us a lot more easily. There is a real problem, I think, with physicians knowing only what is most common among people with a certain condition and not knowing what the entire range of symptoms is like, and I do not fault them for not knowing. In this "information age" in which information pours forth in such torrents that it is difficult for any of us to sort through it, I do not know how the kind of valuable information (even though it is "anecdotal") that I see at the forum can be communicated to the physicians who really need to know about it.
This is really too bad, because as I have learned (and as you implied as you thanked me), knowledge can be a huge help when you are trying to cope. Just knowing that you are far from being the only person with a certain symptom is powerful in the reassurance it provides. My "neurological" symptoms never crossed my mind after hypothyroidism was diagnosed. Then when I became part of the forum and started reading various posts, I found my jaw sagging. More than once, I thought, "So I am not the only one who has had that kind of odd symptom." I learned that it is never too late to feel reassured.
Thanks Jenny and LJ39 for your comments. They are a huge comfort.
While I am determined to get to the bottom of this, I am trying not to get completely disillusioned with my doctors. I know there are good doctors out there but finding one is like finding a needle in a
haystack. All my doctors think my symptoms are an allergic reaction to my eyedrops (a sulfa drug) that I took for a month before realizing it was indeed a sulfa drug. Prior to starting the drops, I was assured by my ophthalmologist that it was not a sulfa drug. I'm allergic to sulfa. I've been off the drops for a month now and my symptoms are not subsiding. So the only other culprits can be either a post viral infection of some sort (west nile, lyme) or my thyroid. Because I developed a nasty rash and case of hives all over that sent me to the ER (two days after stopping the sulfa eye drops), my doctors have been quick to conclude that all my symptoms are a result of the sulfa drug.
If and when I ever get a diagnosis, I will post it here. Thanks again for taking the time to respond. I really appreciate it.
THANK YOU for posting. Yes, I have started muscle twitching..just in the past few weeks. mostly legs, arms, shoulders, sometimes belly. And it seems to coincide w/me going hyper. i notice it when i 'stop' for the day. i also have the burning sensation, same start time. extreme sensitivey to touch as well. my primary wants me to see a neuro as well....even though brain MRI was clear; to rule out MS. my mother has it. I am really struggling w/believing there is nothing else wrong w/me...and I really don't want to start the wild good chase w/seeing neuro, rheuma, etc...but the other side of me says 'what if something really is wrong.' i have terrible anxiety and all this uncertainty is fueling the control freak that i am. i AM glad to see that folks on this board experience similar things to what i feel. i just want to know it's not going to get worse.
Hang in there! And don't jump to worst case scenarios, Stress will definitely cause your twitches to escalate. I've been hyper for over two years and axiety is the hallmark symptom. My twitching occurs only when I am inactive. I also have burning sensations and now muscle cramps at night. Try and remember you are not alone. And be proactive ... see as many doctors as you need to. I'm not getting any answers from mine but I won't let that stop me from seeing them (and bugging them) every time a new symptom appears or an existing one intensifies. I've gone from being depressed over this to downright angry and when you factor in Grave's rage ... watch out! I am going to get answers and I don't care how many tests it takes or how many doctors I tick off along the way.
I just get twitches mainly in my arms and legs. Now the twitches in my legs cause me to fall. I have fallen three times in the last week. My doctor says there is nothing wrong i don't know were to go from here. does anyone one have any suggestions. I'm just glad i haven't really hurt myself yet by falling.
I get muscle twitching from having hyperparathyroidism and elevated calcium levels. I will be sitting and my claf will twitch, then a second later my arm, then my side, stomach ect.... I get them everywhere- I hope when I have my surgery my pesky twitches will leave. I feel for everyone that has to deal with this annoying problem
For what it's worth, I have hashimotos with a slightly elevated tpo antibody count at 250 and I have twitching all over my body. Just any muscle including my tongue, eyebrows, neck, arms, legs, abdomen etc and I get pretty big twitches once about every five to ten seconds. Going to see my doc again tomorrow. One thing everyone might find interesting is that my actylcholinesteraise count is low. That is a marker for organophosphate (pesticide) poisoning, and what I have learned was that hyper and hypo thyroid conditions can influence acetylcholinesterase levels too. This would cause twitching by building up actylcholine at the neuromuscular junctions. I'm no doctor but I've been learning about this for the past several months. it's kind of the reverse of myasthenia Gravis.
I'm wondering if you ever got this problem figured out. It is 5 yrs later from when you posted & I don't know if you will even get this message. I am having some of the same symtoms... night jerking/ twitching & also heavy heart beat which I feel like is from anxiety. Thanks for any help!
How did you check actylcholinesteraise? I have hashimoto too, was on levoxyl 175 mcg for the last 6 years. However, 6 months ago my pcp decreased the dose d.t low tsh, and a month later my muscle twitching began. It is 4 moths already and the muscle twitching are not improving. I have them all over the body, mostly when i am not active, but neither neurologist , no endocrinologist gave me any decent explanation of my symptoms.
What are the actual results of your latest thyroid blood tests? You should be getting tested routinely, for TSH, Free T3 and Free T4. Be sure to include the reference ranges, as well, since those vary lab to lab and must come from your own report.
The lower dose of levoxyl could have caused you to go hypo. TSH should not be used, alone, to diagnose or treat a thyroid condition.
I've been hypo many years. Now experiencing many twitches, heart pounding, walking around in a fog, can't sleep, hair breaking off, etc. The endo says the blood work is in the range, however I have an absorbsion problem with the meds.
Went to a cardiologist, did the treadmill test. They found I now have Premature Atrial Contractions. (PACs) I believe the cardiologist believes I am still too low in thyroid hormone. He called my endo. It will be interesting to see what the endo says to me in December. Oh so long to wait. I keep all my meds because the Doctor has changed the meds so many times. So really at this point I am self medicating and feel somewhat better. Even though the thyro med is in my BLOOD, I dont believe it's getting to the nerves and cells.
I have Hoshimoto's with multiple goiter and have been having muscle cramps/spasms in my neck. I have to really stretch it backwards to get it to go away. It feels like I am being chocked when this happens. My quack says it isn't the thyroid because the thyroid wouldn't cause that. Does anyone else have this problem?
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