Leg and foot twitches and cramps and night

Does anyone get this? What has been helping? I am going nuts with these!!

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I have gotten diligent about taking it twice daily. They should be subsiding.

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Same problems here. My parathyroid and calcium levels were okay. Still take calcium and magnesium and calcitrol.

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I'm sitting here twitching & cramping as I read your posts! I was just about to type it in as a discussion when I saw this! My surgery was 2 months ago. These problems definitely hit a crisis point when my calcium level dropped; an IV of calcium was quick to bring relief & I was able to get on my way within an hour, without the twitching & cramping. Now, today I've been late on calcium pills & the jerking is reminding me to go get them! Hope this helps & I hope you feel better soon.

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I have been twitching in my calves and feet for four months now. The twitching started one month before I knew I had thyroid cancer. Because of that I assume it had nothing to do with my thyroid. I saw a neuro and he said it could be from my hormones. I would talk to your Endo. Also, try to not be stressed...I noticed my twitching is worse then. Take magnesium. I started a diet with mostly raw foods and no processed to see if it helps. Ill let you know if it does.

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usharon, your post demonstrates how important it is to stay on a regular schedule of calcium intake if you are still having problems. Of course we hope every one will eventually get back their parathyroid function but if you are one of the unlucky ones and it does not come back, you will need to learn more of what to do long term.

If parathyroid function does come back, you may start to get too high on your calcium level, so it is important to be checked again! When mine were unstable, at the beginning, it was every month at least. After I was stabilized, it has gone to about every three months.
If you continue with high doses of calcium and/or calcitriol, you will need a 24 hr urine to make sure your kidneys are OK. So make sure and stay in touch with your doctor about this all! Running high and low calcium for long periods is very hard on your body.

sk8soccermom, you wrote that your parathyroid & calcium levels are OK but you still have problems and take all the heavy stuff of those of us whose levels are NOT ok. If your levels were OK you should not still be having problems. Are your levels being checked regularly still? Are you taking anything before your labs are drawn because that will throw off the results? Do say more if you can.

Thanks, best wishes,
Michele

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My labs show low normal for calcium. I have a few complicating issues as well. I have celiac disease so I am a poor absorber of all vitamins due to years being I diagnosed, I have low folate levels and am post breast cancer and have no ovaries, so all my hormones are a mess. I am high risk for osteoporosis because of the celiac and early menopause (43). I have just started reading stop the thyroid madness because my endo ignores my symptoms and my physicians answer is anti depressants. I have to have the high level ablation in January. TT was in April. Legs are always restless.

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I dont have restless legs. I have cramping and twitching in my feet, legs and my arms even though I have increased my calcium and magnesium, have been eating two banans per day and have been drinking more.

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I have been following this conversation and I think it is great all the advice everyone is giving! I have lost all my parathyroid function following my TT in April of 2011. I have struggled with low calcium (but close to within range) for the last year and a half. I experience tingling in my hands, feet and face, have restless legs, cramping and everything else everyone has mentioned on here. It can be very frustrating to deal with. If you don't have a doctor that listens then it's totally worth finding a new one. I have been with a not so good doctor myself and I am now in the process of seeing someone who specializes in parathyroid disorders. We all know our bodies best and sometimes the doctors are not very sympathetic. Just because your calcium is within range does not mean that is where you should be if you are having symptoms.

Larcybird- the link you posted was an excellent source for me!! Thanks so much for sharing it!

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sk8soccermom, if you are on calcitriol and adequate doses of calcium your symptoms will be better BUT even better your risk of osteoporosis will go down. If you want more complicated explanation go to the following info....
http://www.endotext.org/parathyroid/index.htm

It is very indepth but there is good info in the link! :)

satellite - I totally agree - a good doctor is the best thing you can do for yourself with HPTH! It's even worth traveling. I go to UCSF and Columbia (NYC) each a few times each year. How about you?

Michele

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You're welcome satellite :)

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Michele- I am super excited because I wasn't supposed to see my new dr until Jan 3 but I got my primary care to call for me and they fit me in today!! He is a local dr but he specializes in parathyroid disorders. If it doesn't work out with him I will go back to Wake Forest Baptist or Duke University. My symptoms have gotten so much worse and I don't know each day how I am going to do. It's crazy that just a small thing can make you feel so bad! How long have you been dealing with yours? Have you ever had injections (Forteo)? I just tried them for about 8 wks and it was working, but the insurance would not cover it so I had to go back on Calcitriol.

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Mazbarth, thank you for your reply, and thanks to everyone else who jumped in.

RobbinD, I understand when you describe the difference. I, too, have watched my toes, feet, legs, hands & arms suddenly go into a major spasm and actually curl up before my eyes. It's like I get stuck, and it's quite painful.

I've been miserable today with leg pain, but I'm not sure if it's the calcium issue or the fact that I had to go back on medicine to lower cholesterol. (I had a minor stroke in June, 2011 when cholesterol creeped up without my knowing it!--I was 52.) When I was on Lipitor I complained for months about leg pain (this was before Thyca was diagnosed or calcium issues were discovered). Then when I had a blood test for something else, there were my muscle enzymes, raised considerably. It's like every time they did a test for one thing, another would be discovered. That's when my Dr. dropped Lipitor and added CoQ-10.

Are you on anything that would raise muscle enzymes & cause that pain? Just thought about that...

The thyca was a total surprise, because I was trying to get my carotid arteries scanned but the thyroid nodule was so large it was blocking the view. Bone density was positive for osteoporosis, carotid artery scan was positive once they scanned around the growth. And then, the thyroid biopsy came back positive for cancer. Could not believe it!

Oh, how I wish this leg pain would stop! Does this last forever?

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satellite, I am currently on PTH 1-84 through Columbia Univ. in NYC so yes, it is so so much better than the calcitriol. I don't know if they are still looking for participants in the study but that might be a way to go. You do have to travel to NY and they don't give any help with the cost of getting there so that can be an issue for a lot of people. (I come from CA which is expensive! :(

How long have you been HPTH? I have been dealing with this now about 3.75 years! It's not been fun either! :( But that is why we are talking about it right! :)
Best wishes, Michele

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Usharin, i have had nights where I feel I cant go on any longer. Yesterday my whole left leg was cramping during Boardwalk Empire. I had to walk around.
Meds I take:
I am 56 and I already have to take two meds a day, the synthroid 137mcg and atenolol 50 mg. i have to take a b complex a few days a week or the corners of my mouth irritates me. I take calcium and vitamin d and the magnesiun 250 mg. i will take a coq10 when I go into that cabinet and see them.
At night i often have to take either 5 mg of ambien or .25 xanax in order to sleep b

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Robin....you really need to get a COMPLETE blood profile at your endo. It seems since my TSH has been low, I have more complaints. Could it be that a low TSH is causing some of your problems? My endo does a complete blood panel when I go. I sometimes feels like I am being a "cry baby" but I know my body is not like it was prior to the TT. I just call and ask to go in for blood work and he makes adjustments based on the results for me via a client portal or his nurse will call. Blessings to you. You are in my prayers as well as the others on this site. The journey of finding just the right meds is taxing on me both physically and mentally.
Take care,
Dinah

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I will have labs done friday after my body scan and again in two weeks. I told the nurse about the twitches so they will draw a full panel

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Hi I had my TT 7/11. I also have had strange feelings in my legs. I thought at first after surgery it was Ca, but my levels were always good. For me they felt like electric surges, I know strange.
So long story made short, I have had my dose of levoxyl decreased every 8 weeks. My TSH was 0.02. I am now up to 0.11. As my TSH has gone up I have felt better and much less electric surges in my legs. I also had ringing in my ears when I lay down and hypersensivity to noise. That is getting better also. Jan 2012 I had cytomel added. When I first took that I felt like vibrations under my skin, very strange. That does is adjusted and I feel good now.
So hang in there, I think the leg surges are to much medicine. Good Luck

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Curling toes and muscle twitching sounds like could be low potassium. I have experienced those conditions and had a severe episode, where my whole body froze up. (Hypokalemia) they don,t know why I have low potassium. But now just diagnosed with thyroid cancer, waiting for appt. with surgeon. For total thyroid removal. Potassium, magnesium and calcium all need to be in balance.

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RobbinD, I would request a parathyroid level along with calcium, magnesium and phosphorus, if you can get it all together! :) Let us know how it goes for you!

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I have had issues for 12+ years. It's NOT always parathyroid problems. There is a disorder called peripheral nerve hyperexcitability or pnhe. It covers several disorders. I found out about it by accident looking for an old post on this forum. I finally found some relief from all the nerve activity by taking a combo of Ambien and tramadol. It's a disorder I wouldn't with on anyone!

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