Muscle Cramps related to Hypothyroid?

[PetalBug]

Hi everyone!

I am new here and just had a quick question.  Ofcourse it's one of those questions that doesn't make sense without some background information, so here goes....

I am 29 years old, about 12 years ago, at age 17, I was diagnosed with Grave's Disease (hyperthyroidism).  At that time I really didn't realize what that meant and a lot of me just really didn't care.  After 12 years of these symptoms I decided to go back to my endocrinologist and do something about it.  So in November I went to see Dr. D (my endocrinologist) and after him yelling at me for not coming back sooner and some labwork, sure enough I still had Grave's Disease.  Out of the couple of options he gave me to "cure" the condition.  I decided with the radioactive iodine therapy.  

On 12/4/2008, I took one little pill and my life has been worse ever since.  My follow up with him was 6 weeks later.  When I saw him in mid January and he asked about my symptoms, Dr. D decided that my thyroid levels probably was not low enough and he wouldn't draw my labs that visit.  He said he would wait another six weeks and then maybe draw my labs.  About a week later everything hit me like a ton of bricks....I had absolutely no energy, I was constipated and depressed just to name a little.  Without realizing it, I had also gained about 15 pounds.  So I called up Dr. D.  He told the nurse to have me come in for labwork.  The following morning I arrived for my labwork and later that afternoon they called me to ask where I would like my Levothyroxine script called into.  I started on 100mcg per day, the following day.  

About a week later I started having muscle cramps.  There really wasn't a trigger at all, I could just be sitting on the couch reading and get a huge cramp in the side of my neck.  Or try and prop my leg up and my thigh would immediately cramp up.  No area in my body was safe.  I just would cramp up without any warning.  This went on for a week and I called Dr. D's office.  I told the receptionist my symptoms, after speaking with the nurse, she spoke with Dr. D, who said to cut my Levothyroxine in half and only take 50mcg daily for a week and then continue with the whole dose.  I took the new dose for a week without really seeing any relief for my muscle cramps.  Then started taking the whole dose again.

By this time I was starting to have different symptoms.  The best way I can describe the new symptom was racing thoughts.  I would wake up in the middle of the night with my brain just racing away with thoughts and I wouldn't be able to go back to sleep.  It didn't matter what time I woke up, my head would just be going crazy with thoughts.  I couldn't keep my thoughts straight either when I was awake.  So I called Dr. D's office again, only for the nurse to tell me that it takes a good month for Levothyroxine to get into your system and that she didn't think the racing thoughts had anything to do with the med.  She spoke with Dr. D and he said for me to go to an outpatient lab and have my labwork drawn.  The next day I got a call from the nurse who stated that my thyroid levels were just where the doc wanted them and maybe I should see my primary care physician or a psychiatrist for the symptoms I had been having.

Now completely frustrated, I called up a PCP, since I didn't have one to begin with who made me an appointment for later in the week.  On 2/20/2009, I went and saw the new PCP.  I told her about the muscle cramps and the racing thoughts.  She attributed my racing thoughts to my recent trial of Chantix and told me that it was the medication still in my system.  (I had taking Chantix back in late november to try and quit smoking, but had broke out into a rash). For the muscle cramps she was certainly perplexed.  She decided to draw a whole bunch of labwork on me.  That afternoon she called me to let me know my CK level was 1,683.  She asked if I was dehydrated and I let her know I drank plenty of water.  She told me to watch my NSAID use and she would see me the following week in her office.  Last tuesday I went to see her and she stated that she found articles for correlation between muscle cramps and hypothyroidism.  I told her I had found the same articles online and they stated that once your thyroid levels came back into range the muscle cramps would stop.  Mine hadn't stopped and according to my endocrinologist my thyroid levels were good.  She then stated that she thought the muscle cramps were coming from my high CK levels and that once my CK levels came down the muscle cramps would stop.

I guess somewhere in the beginning of all this I should have let you all know that I am a registered nurse, who worked a cardiac unit before changing over to a dialysis clinic awhile ago.  I guess I could be incorrect on this one but I was always taught that CK's were enzymes that lived in muscles in your body and are released when that muscle is damaged.  So I guess this is where I am getting confused????  How can an enzyme that lives in your muscles until they are damaged or cramped be causing the muscle to cramp????

If the muscle cramps are related to my hypothyroidism and that my levels are too low, why did my endocrinologist decide to LOWER my levothyroxine dose for a week, instead of raising it or drawing my labwork first....

My PCP decided to draw my CK level on my last visit 3/4/2009, she stated she would be happy with when she saw a downward trend.  Now on the day I went and had my labs drawn I hadn't had a cramp in 2 days.  I could have told the lady that the result would be lower because I knew I hadn't had a cramp in a couple of days.  Low and behold when the result came in at 460, my doc called me with the happy news and pretty much said call us if you need anything else......

Errrrrrrr, this is very frustrating.....

My endocrinologist doesn't want to see me until april/may.....I guess I'm just supposed to live with the muscle cramps for the rest of my life.  They don't happen everyday, but when they do they are pretty much debilitating for hours.  It's annoying....

Anyone been through this situation or have suggestions as to what I should do??  My husband wants me to go to another Endocrinologist and PCP.  

[Barb135]

This is a very old thread and most of the previous posters no longer participate in the forum, so it's unlikely they will respond.

Your situation will get much better attention if you start your own thread, and list whatever test results you have, along with reference ranges, which vary lab to lab and must come from your own report.  Also please list what med(s) you are on, the dosage and how long you've been on it, as well as whatever symptoms you have.

You can start a new thread by clicking the orange "Post a Question" button at the top of this page.  You will get a blank page to type in your information, then click the green "Post a Comment" button.

[mamanewport]

I have beeb on this same rollercoaster that you described for 9 years, hypothyroid, levoflox, crippling muscle cramps all over my body. My PCP found the hypothyroid .. I was sent to a neurologist who is looking into a diagnosis of MS or possibly  a hereditary dx of dyskinsia or  something like that. About two months ago, I stopped all the meds I was on for about a month. The cramps were like you described, "debilitating." I went to my PCP and was put back on 75 mg of  levoflox and only a week into it all muscle cramps have stopped. I was having severe sweats 24 hours a day as well. At my age I dismissed the sweats as menopause. After going on the higher dose of levo, they disappeared as well. I have been trying to decide if the cramps were as well a sympton of hypothyroid. My CK levels were up  and down. I am getting blood tests done this week and will bet my Dr. tells me that both  thyroid and CK are within range. Can't wait to ask her the results.
I came online to just ponder if there could be a correlation and your decription of your issues tells me that there could be. Thank You so much for sharing and I hope you get relief from the symptons soon.

[gimel]

I've had leg cramping when I got into being hypothyroid.  Please post your thyroid test results and their reference ranges shown on the lab report so that members can assess your testing and treatment.

[larry849]

I can't believe what I'm reading here. I am up at 4:00 AM, been up for two hours because of extremely severe cramping in my left leg and right foot. Some background: I had a "thyroid storm" a couple of years ago, and had to have a total thyroidectomy. The surgeon was able to save at least two and "possibly" three parathyroids. I'm on Levothyroxine (sp?) 125 mcg. Also on vit D, B-complex, B-12, multivitamins, morphine (had two level spinal fusion 2007), but these cramps remind me of what runners sometimes get--like a charlie horse, but often they last for hours, that's why I'm up. As soon as I lie down in bed they return. This goes on all night, but not every night. I can sometimes go a week or more without a single spasm, and then boom! they start up again. I'm disabled from the spinal surgery, my left leg is always partially numb, cant feel the left foot. Terrible back and hip pain, from sciatica since the surgery. I feel like I'm losing my mind--the reason I'm typing this is to keep my mind off the pain after a sudden attack of leg and foot cramps tonight. I have a pretty high tolerance for pain, but this is ridiculous. Now that I've gotten all that of my chest, I just want to thank everyone for their comments. My PCP offers no help, just sends me to a pain specialist, and that is worse than no answer at all. I had to take myself off the Fentanyl patch, which I wore for several years, until Medicare stopped paying for it last Jan. I couldn't afford $700 a month for them, so I went through withdrawal at home and nearly died. That is when the cramps started--during withdrawal. I'm not a drug abuser, never took more meds than prescribed, when I went off the patch I couldn't get out of bed for 9 days, no eating and virtually no fluids. The hospital ER treated me like I was some kind of druggie, which really frosted me. They re-hydrated me and sent me home.. I still have no answers for the cramps, they gave me a muscle relaxant (Methocarbonal) to take when they happen, but they do nothing to stop the cramps. Sorry for venting, but I'm relieved to find I'm not nuts, that others are having the same kind of symptoms, though I wouldn't wish them on my worst enemy. I wish all good luck getting help for this problem.

[Ericamegan]

Your story sounds similar to mine. I also have Graves and received RAI in Feb 2010.  A couple of months after I started having hypo symptoms. I had blood work done and my dr said it wasn't time to start replacement medicine. Four months post RAI I started having bad cramping and many other hypo symptoms.  My dr said my TSH still showed .001, so the cramping wasn't caused by lack of thyroid.  6months after RAI the cramping had become severe & constant. The cramping was in my neck, shoulders, hips, thighs, chest, & butt. I was also gaining weight, moving slowly, losing hair, & having hot flashes. I got in with a specialist and she said I had been hypo for months. All these symptoms were from low thyroid.  She started me on 75mcg synthroid and I in a couple months all the cramping was gone.

Questions for you:
Are you currently taking and thyroid meds?
Do you know if your dr is testing Free T3 & Free T4 or just TSH?
Can you post your latest lab results?

I worked my way up to 150mcg synthroid. I was felling better, but still had lingering hypo symptoms a year later. Fatigue, swelling of my face & eyes, hair loss, hot flashes & inability to lose weight with proper diet and exercise.
Four months ago I added 2.5mcg cytomel(T3) twice a day, for two weeks. Then up to 5mcg twice a day since. I also reduced my synthroid to 137mcg. I am feeling so much better.. All symptoms have improved!   Make sure you start slowly if adding T3 and be patient when giving your body time to adjust.

[greenqueen04]

I'm a Personal Trainer and I suspected I had Graves and harrassed my GP for tests. Unlike the text book Hyperthyroidism I gained weight so it took some convincing. I experienced periods of manic activity which, if coincided with a night on the town, became a source of entertainment, followed by weeks of exhaustion. Eventually I got to see 'specialist' who put me on Carbimazole which seemed to stabilize me for a year but due to the toxity of the drug, I had to come off it. I was fine for another year before I went haywire again. I had radioactive iodine therapy and went from 11 stone to 13 1/2 stone in less than 2 months after therapy......and one physician had the cheek to tell me that calorie expenditure was closely linked to exercise....DER....what would I know!!!! As a PT I knew if I couldn't lose weight, then no-one could with this condition!! I realised that I was on a hiding to nothing and decided to read more in the matter myself. Dr. Shomon's book explained alot. Armed with some of her theories I returned to the specilaist (any of this sound familiar???!!!) who said nothing further could be offered. I 'sacked' him and saw his Registrar who was much more helpful. He explained the relevance of all the various hormones, CK, TSH etc. I regularly had blood tests as anyone out there with this disorder knows it fluctuates... I;ve met many people with Hypothyroidism who gain weight but my muscle cramps are so severe I feel the muscle is going to rip off it's origin or insertion point..and it can strike at any time, though I do believe, in my case, it is related to hydration as if I'm honest I;m not that good at taking fluids....And if I have just one alcoholic drink...WELL...do I suffer..anyone else found this? I also find my core temp goes up and down like a yoyo (one  minute boiling hot, next freezing cold, not related to environment) and my libido abandoned me bigtime....great this disease...no wonder they call it Graves - I feel fit for the Grave  now!! I asked for T3 therapy and wondered if anyone out there has had it and if it worked...I'm told there are risks and it doesn't work on everyone AND probably the 2 biggest reasons for not giving it are the expense and the lack of research into it!! But, in America research has proved it to be sucessful in raising people 'out of the fog' and in weight loss. Something worth considering... If the food industry insists on using growth hormones to rear meat I believe we will continue to see an upward trend on what was once considered to be a rare disease.