If tested since the RAI, please post results and reference ranges shown on the lab report. Also, what thyroid med are you taking and what is the daily dose? What other symptoms do you have, if any?
I am the same way I just had the RAI on the end of Sept and I feel very bad with the cramping I can't stand it is there any medication for it? Sometimes I just want to go to the hospital...
Muscle pain, especially in the legs, can be a side effect of levothyroxine. I had debilitating leg pain and cramping when I was on it. Within two weeks of getting off the levo, the muscle pain was gone. Don't let your doctor tell you it has to do with supplements you're taking. It's probably the drug.
That said, your ferritin, vit D, potassium, and B12 levels should be tested regularly as they are often low in hypo patients.
Since you had RAI 25 years ago, it may or may not have killed off all thyroid gland tissue. The best way to determine your thyroid status is by symptoms, and also levels of the biologically active thyroid hormones, Free T4 and Free T3. If tested for those, please post results and reference ranges shown on the lab report. You can't be sure of whether you need thyroid med or not without seeing both of those test results. Also, when already taking thyroid medication TSH is basically a wasted test, and certainly not one that should be used to medicate a hypothyroid patient.
I was diagnosed hyperthyroid some 25+ years ago, the doctor I was seeing thought I had the flu, it was his first case of thyroid dysfunction and he wasn't a young man. Anyway, I was nuked with the radioactive pill, and prescribed bed rest until I recovered enough to go back to work. Now, well about 10 years ago my PCP decided to put my on levothyroxin due to a change in the range that the medical establishment decided was best for TSH and mostly I didn't notice any difference in energy, etc. Recently however I've been experiencing sleeplessness due to muscle spasms in my left shoulder/back (recent is within the past 6-9 months). They would come and go seemingly without reason. I live in the mid-west and do not eat iodized salt, nor consistently eat sea food/kelp/sushi (although I love it). I was never hypothyroid until a now retired PCP decided I was due to the new TSH scale. Anyway, I started reading about iodine and selenium and decided to try some supplementation, low doses mind you at or slightly above the RDA. My energy levels shot up, but the darn muscle spasms persist, so I am going to try stopping the synthroid for a while (until it clears my system), but will go back on if I feel I need it. I'm thinking that PCPs and some endocrine doctors don't realize that there are natural deficiencies that should be addressed first and supplement with pharma drugs after nutritional needs are ruled out. I'll post back here some time down the road to let you know how this is going, but so far today I haven't had a muscle spasm, it's way to early to tell what the reason is and since I'm stopping some other supplements as well (just in case, but I wasn't on them when the spasms started so,...) and the spasms really hit me when I'm trying to sleep but I hope this yields positive results.
You have to make sure first whether you're hyper (over sweating, tremor hands, fast metabolism) or hypo (muscle cramps, fatigue, low metabolism) because there's no herbal (I think) can cure it. You have to take drug. But I'm really glad I stumbled upon this community cause so many questions have been answered here.
Thanks guys. I diagnosed with hyper on August that actually my symptoms went years back.
After My endo gave me methimazole I felt much better, from 40mg now 5mg dose a day. But later I suffer from muscle cramps if I turn my body abruptly so I do lots of stretching (really gentle and slowly), keep on walking my dogs in the morning although I still feel really sleepy (I usually morning person), take a lot of food suplement.
Now I feel like a normal healthy person though the cramps sometimes come but still bearable.
There was a week I couldn't see my endo when I was still on 40mg methi, I was having really bad pain neck and headache. Now I realize that the dose for tyroid should be correct to get the best benefit from the drug.
I know several in the general area. If you will please post your thyroid test results and reference ranges shown on the lab report I will be better able to suggest a doctor.
I am a nurse in Southeast Michigan with Hashimotos and severe cramping. My tests too are all within normal range. Do you know of a doctor in this area?
I have been hypothyroid for about 40 years overall. Most of those were spent trying to convince a doctor that I was hypo. Finally with basal temperature data I was able to convince my doctor to give me a trial of T4 med. Over the next 30 years my dosage was gradually increased to 200 mcg and I still had lingering hypo symptoms.
After finding this forum learned about the importance of Free T3 and got mine tested and confirmed as low in the range, even though Free T4 was at the very high end of its range. Got my med switched to Armour Thyroid, and after some tweaking to get my Free T4 around the middle of its range, and Free T3 at the upper end of its range, I felt better than I could even remember.
Over all that time I was involved with only two Endos. I found both to be arrogant, rigid, and convinced that they were never wrong. You don't necessarily need an Endo, just a good thyroid doctor. By that I mean one that will treat clinically, by testing and adjusting Free T4 and free T3 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results.
Also I have learned about the importance of Vitamin D, B12, and ferritin, which are frequently too low in the ranges for hypo patients. D needs to be about 55-60, B12 in the upper end of its range, and ferritin about 70 min.
Are you still dealing with hypo symptoms? If so, if you will tell us your location, perhaps we can suggest a doctor that has been recommended by other hypo patients. Also, if you want to post your thyroid test results and reference ranges we would be happy to give our opinion on your status.
I have been told recently that you need to find an endocrynologist that treats your symptoms not your lab results. We all don't fit in their little bracket. They only tested a very few people to set up those stats.
I had Grave's Disease also and after the radioactive iodine my thyroid completely died off. I was cramping in every part of my body with the slightest movement. It was absolutely awful. My legs would cramp in my sleep and wake me up the next day I couldn't walk my legs were so swollen. I've been dealing with hypothyroidism since 1993 and I find that most of the endocronologist treat the lab results not the symptoms or the patient..
I've never been hypo, always hyper. I do have Hashimoto's. My cramps have increased greatly in the past couple of years. Now I'm getting them in my sides-about stomach level- and in my shins and feet with little movement on my part. These are severe cramps that send me up out of bed or stretching to extreme degrees to try to get them to stop. My doctor doesn't seem to care. All my levels, liver enzymes, sodium, potassium, magnesium, vitamin D, etc. are right where they should be and he actually lowered my thyroid meds twice in the past year. I really am at my wits end
Are you sure that it was hyperthyroidism instead of hypothyroidism? Either way, have you been tested for your thyroid hormone levels? If so, please post results and their reference ranges. If not, then why not test and see if something needs to be done to help relieve symptoms?
Hey! Wow I am so sorry you are going through this, but I am happy to know that I am not the only one- Today has been a cramp day and yes DEBILITATING is the correct word for it....and no one understands unless they to are going through it. When it first started it scared the s--- out of me! I immediately went to my doctor GP and he didn't seem the least bit concerned even when I was over taken in the exam room with one and screamed my head off. For 6 years I suffered with this, exhausting every thing and every one I knew to find an answer...no one had a clue. I found out on my own that it was due to hyperthyroidism. I was relieved to know why it was happening, but I am still at a loss as to what to do about it- I cry sometimes it hurts so bad, I am afraid to cough, to laugh, to move. If there is anyone out there that can help please do, my only course of action thus far has been to hydrate, and load up on potassium- I don't know if it helps, but it is all I know to do.
a tsh over 3 gives me muscles cramps and aches and pains like a old lady or arthritis but when my synthroid is increased...BAM...NO MORE PAINS....SO it is definitely a hypothyroid symptom of not enough thyroid hormone medicine.....I suffered for over a year, but was accidently over dosed when changing to a different medication and in 3 days all pains vanished...THANKFULLY me and my dr discovered it was due to too little free t4 in my body.........and I have not had them since.......I had them in my neck, arms, elbows, feet, sometimes legs, knees, wrist sometimes, at one point it hurt to pick up a glass of tea or a pot while cooking.....don't be alarmed but don't wait to go to another dr ...I went to a bio identical hormone dr and you may want to just ask if they can increase your synthroid to see if muscle pains leave....it may take 4-6 weeks since I was accidently given double the dosage I needed almost.....
Comes from eating full cream dairy food like yogurt, chocolate, cream, milk etc cut these out for a few days and see what happens! I switched to light milk and cheese NO yogurts, chocolate or cream etc and it all stopped. Doctors will take u in a bit fat circle waste of time when it's that simple.
When I read your story, I couldn't help but wonder if you have ever been tested for Free T3 and Reverse T3 , to make sure all that T4 is being properly converted. Free T3 largely regulates metabolism and many other body functions. Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.
Many members report that symptom relief for them required that Free T3 was adjusted into the upper part of its range. So usually we recommend testing for Free T3 and Free T4 as the first step. Infrequently we see that a member will have adequate Free T3, but still have hypo symptoms possibly due to the Free T3 effect being partially offset by excess Reverse T3. In those cases we then recommend testing for Reverse T3 as well.
You said that all your symptoms never went away even when the blood work was right. So, in your case, I think you should go ahead and request testing for both Free T3 and Reverse T4 so you will you know if your body is properly converting the T4 to T3, adequate to relieve hypo symptoms.
In my life it went just like the first post on here. To many side affects come with Hypothyroidism to write but it is mental and the cramps and spasms are unbearable. In my case every doctor I seen would never connect my cramps and Hypothyroidism as the cause. Everything I would say to the Doctors just go's in one ear and out the other. I was very upset over this. This all started with me in 2000 i have been on a high dose of Lex 300mg and have to take sometimes up to 6 350mg soma a day just to keep them cramps down. They have never went away even after blood work is right. Now for the first time in years everything was under-control My weight was 140 cramps stay away most days and I felt great till I lost my job and unable to see doctor to get my meds. And guess what it's starts all over again...I cant move without cramping up in pain again and it's only been a month since I have been off my meds. But there is a new symdom now dizzy spells like i am going to pass out. And I gained 20 pounds in a month with no energy. All I can say is stick with it ' it will never go away or stop but at some point it will be manageable it just takes time. It took me 12 years and lots of doctors. But most of all never stop taking your meds .
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.
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.
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.
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.
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.
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.