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Old 08-23-2005, 09:30 PM   #1
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Muscle twitching...anyone?

I have been experiencing these symptoms since the delivery of my son a year and a half ago. Sorry so long, please read background though:

These symptoms are not constant and stay for a few weeks, disappear for a week of so when I get my period, and then return. There appears to be some kind of correlation with my menstrual cycle which must be hormonal; and something about the menstrual cycle gives me some relief from this hellish existance. Anyways here are my symptoms: muscle twitches all over my body, shortness of breath (this Sx. occurs transiently and not all the time and does go away) but when it happens it feels like my diaphragm just lazes out and doesn't want to move as fully, hot flashy kinda sensation;feeling like I am 1,000 degress hot inside, sweating bullets, trouble burping up gas, when I swallow sometimes it feels like a lump in my throat, some days I have hoarseness and lots of throat clearing, I've become very moody, at times muscle cramps in hands and feet, pooping like 5-6 times a day, peeing like 20 times a day, transient muscle weakness mainly in my calves and arm (biceps) which resolves like the shortness of breath, shaky hands, racing mind/lack of concentration, complete loss of sex drive, insomnia despite feel completely dead tired, did I mention irritablility and angry MOOD SWINGS? at times it feels like I have permanent PMS or need an exorcism...j/k

I had hypo symptoms for years all through my 20's, even went on Levoxyl at age 26, when internist Dx'd me w/ hypothryoid. They discovered my thyroid had a nodule at 30 years of age. (incidental finding) They have been "watching" them every year and ultrasounding them as well. saying they are still encapsulated within the gland. Now at the latest ultrasound they tell me there are now 3 nodules? what in the samhill? they say not to worry only 10% are malignant...blah blah blah. (which btw, I cannot seem to be so blase like the internist about this scary proposition)

All of a sudden right after I gave birth is when all everything began. Literally hours after delivery I had shortness of breath, diaphragm wouldn't move barely etc.. and then I start having these hyper symptoms in the weeks to follow up to the present. I have been breastfeeding and am not sure if this helps or hurts my Sx. but wonder if I stopped if my Sx would end? When the twitching began I Googled it and only found sites on ALS which nearly gave me a heart attack. I did seek out a neurologist who did an MRI and said no to both ALS and MS. I got shipped back to my internist who thinks it's just stress related? whatever lady...So I self-referred to an endocrinologist thinking maybe these nodules have something to do with these Sx. What kind of problem with my thyroid could be making me twitch? the nodules? the parathyroid? The man drew the TSH, (.5-5.0),and it was WNL at .7
My TSH on the draw internist did three months prior, (which the endocrinologist didn't have b/c I self-referred) was 1.4.

I went back to my internist b/c these Sx have persisted for a year and a half. My latest TSH was normal and the internist wouldn't draw a T3, T4, or T7. ..so I self referred to back to the endocrinologist and have appt. coming up on Oct 31st. I pray that this man doesn't patronize me or my suffering like the internist or God forbid say that b/c I am within the normal range tell me I'm crazy?

Until I see the endocrinologist I would love to find anyone else with the muscle twitches and want to know how to keep them at bay? any dietary changes I could make?Also, my TSH in June was 1.4 and three months later is now .7 is this a marked change or an expected fluctuation?

any replies very welcome !!!! SOS

 
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Old 08-23-2005, 10:26 PM   #2
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hypobug HB User
Re: Muscle twitching...anyone?

I don't know about all over your body. After I read your post I looked up hypothyroidism and muscle twitces because I was reminded of the ones I had on my face last year.
Guess what? Some muscle twitches ARE symtoms of Hypo.
Best of luck. Feel better soon,
Hypobug

 
Old 08-23-2005, 10:41 PM   #3
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Re: Muscle twitching...anyone?

I hear your suffering, and most of us have gone through the "oh you're fine" malarky drs have fed us for years. Sorry you feel so crappy. I've had a similar experience to yours. I was dx with multinodular goiter 7 years ago, but levels appeared fine. I went on synthroid for a couple months only to go off because it made my thryoid hurt...they put me on it to try to shrink my thyroid and the nodules. I was never tested for antibodies until I was up for surgery in Feb. where I had a subtotal thryoidectomy, it was choking me.

My advice to you is this: tell the endo at your next appointment that you want to be tested for antibodies. I have hashimotos and that will make you have swings in levels. Also if you have nodules, they sometimes produce hormones as well, and will make your levels appear "normal". I never questioned my drs, even though I was desperate to find out why I had the symptoms I did. Went on several anti-depressants, they made me very sick so I didn't stick with them.

If this is a new endo, then write all your symptoms down, your labs that you know about, and any questions. There is no reason that childbirth will leave you feeling this way on a normal scale. You could also question the dr. about calcium levels because you are nursing. I have low calcium for another reason, but the cramps and twitches are enough to drive a person nutty, especially when trying to sleep.

I hope you find the answers you need. I know I'm not that much help, but I thought I'd try

Susan

 
Old 08-24-2005, 03:55 AM   #4
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K9Mom HB User
Re: Muscle twitching...anyone?

When hyperthyroid I had muscle twitches of my large thigh muscles and upper arms (not constant, but persistent). I also did not have the stamina to hold my hair dryer above my head long enough to dry my hair completely.

Kudo's to you for pursuing this and trying to find answers. I would suggest that you ask for a "Free T4" and "Free T3" test in order to fully check out your thyroid to see if it is under or over producing. Good luck!
__________________
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
Old 08-24-2005, 05:47 AM   #5
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Re: Muscle twitching...anyone?

Hi there.

I have a goiter with nodules. According to tests I have no antibodies...not sure what that means. I know I swing back and forth from hypo to hyper. When I am on the hyper end I get muscle twitches all over my body. There isn't a place where I haven't had them. I am currently being monitored with ultrasounds every six months. I, too, conducted my own research and came across sites about ALS. It was scary. BUT I also read that thyroid disorders can cause lots of muscle twitching. I know this is most likely the cause for me because my twitching is transient...comes and goes. In the meantime take calcium....I found that helped a tad. Let us know how you make out with the endo.

Mimi

 
Old 08-24-2005, 06:01 AM   #6
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Thank you Mimi et al

Yes my twitching is all over, just like you Mimi it's everywhere. But there are days I have no twitches at all. I also tested negative for antibodies. The first and only endo I saw about a year ago tested for them. Despite my symptoms he said that I was still in the normal range for TSH, though he did say I was at the low end of normal. I strongly suspect I go between poles of hyper and hypo, but I cannot prove it, just woman's intuition and symptom fluctuation. Four questions for all:

1 My TSH went from (1.4) to (.7) in three months time, is that normal? or could that be why I feel like yuck?

2. Could a person be hyperthryroid but not have their T4 , T7 elevated? like is there a secondary hyperthryoid condition?

3. What causes the breathless feeling?

4. why is it when labs fall within normal ranges but patient reports feeling like hell, with clearly visible thryoid nodules do doctors just say, "oh well.."? why the indifference to suffering with this issue?

 
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Old 08-24-2005, 07:59 AM   #7
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Re: Thank you Mimi et al

[QUOTE=cerealkiller]Yes my twitching is all over, just like you Mimi it's everywhere. But there are days I have no twitches at all. I also tested negative for antibodies. The first and only endo I saw about a year ago tested for them. Despite my symptoms he said that I was still in the normal range for TSH, though he did say I was at the low end of normal. I strongly suspect I go between poles of hyper and hypo, but I cannot prove it, just woman's intuition and symptom fluctuation. Four questions for all:

1 My TSH went from (1.4) to (.7) in three months time, is that normal? or could that be why I feel like yuck? /QUOTE]
I wouldnt focus to much on the TSH , you need to have your FREE levels checked to see where you stand..

2. Could a person be hyperthryroid but not have their T4 , T7 elevated? like is there a secondary hyperthryoid condition?/QUOTE]
Im my opinion yes!! If your FREE T3 is high you can exhibt hyper symptoms..

3. What causes the breathless feeling? QUOTE]
to high of free levels or to low

 
Old 08-24-2005, 01:59 PM   #8
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Re: Muscle twitching...anyone?

Hey cerealkiller;

Your story is my story. The highest my tsh has ever been was 4.5 or something and the lowest was .5, but I had been exhibiting symptoms for awhile and I truly believe it was lower. I lost 15 pounds in two weeks and went to the doctors because I was shaking, couldn't breathe, had muscle twitches all over my body, sweating profusely and had tingling in my fingers and toes. They told me I had ms and didn't even test my tsh until a month later when it was around .5. I was actually starting to feel pretty good by that point. I've since gained 30 pounds and can't lose it. Every once in a while I go hyper and lose 5 or so and then I gain it right back when I go hypo. The docs told me my thyroid is dying and I'm going to end up hypo. They look at me like I'm nuts and tell me nodules are normal - inferring I am an enormous hypochondriac. I don't know what to tell you. I'm still on my own journey through this hell. Good luck and let me know how you make out.

Mimi

 
Old 08-24-2005, 05:11 PM   #9
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Re: Muscle twitching...anyone?

Cerealkiller,
You need to have the correct tests run. Ask for these:

Free T4
Free T3
TSH

The reason why you want the "Free" thyroid hormone tests is because it is only "free" thyroid hormone that your cells can use AND estrogen (as in birth control pills, hrt, etc) does not interfere with the "Free" tests yet it does interfere with the plain T4 and T3 tests.

Also, you should ask specifically WHICH thyroid antibodies you tested negative for. If you are hyperthyroid, the antibodies that cause autoimmune HYPERthyroidism is "Thyroid Stimulating Immunoglobulin" or "TSI" for short. You can test negative on all of the other thyroid antibodies and still be positive for TSI and have Graves disease.

Do yourself a favor and get a hard copy of all of your labs...start keeping a file at home now. You will need to follow your results on these specific test over time while you are being treated.

Speaking of treatment, I highly recommend the book "Thyroid for Dummies" by Dr. Alan Rubin. It is a crash course on all things thyroid that you will need to know. Some doctors like to rush hyperthyroid patients into killing their thyroid gland with radioactive iodine (RAI). Please make sure that you understand all 3 treatment options and the expected outcome of each before you consent to any treatment that kills this very important gland.
__________________
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
Old 08-25-2005, 09:09 AM   #10
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one last question

Thank you to all who responded. I am picking up my medical records. The endocrinologist has ordered the blood work per my request before my Oct. 31st visit. Hopefully, something will look out of whack (can't believe I just said that) because at least then I won't look like a whack job! LOL. One last question: does having more than one nodule mean it's more likely cancerous?

 
Old 09-07-2005, 08:53 PM   #11
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Re: Muscle twitching...anyone?

Boy, you all have no idea how very happy I was to see your posts about hypothyroidism and muscle twitching. I told my endo about it and she had me totally convinced that one had nothing to do with the other. I just today convinced her to increase my synthroid, so I'm hopeful things will be getting better. The twitches aren't really painful as much as annoying. Then one day a month or so ago, there was a lady who had ALS and she described her first symptoms as "her muscles were having a party" when she went to bed at night. I was beyond panic based on that and what my endo told me.

So, on Friday I have to see a neurologist to be poked and prodded because she won't take the wait and see attitude regarding the increased dosage (sigh...). It's only money and pain, right?? (I'm joking, sort of...). So, I just wanted to thank you all for the posts because they made me feel tremendously better!! Thanks!

 
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