Levoxyl and good luck

i discovered that i had hyperthyroidism which was from grave's disease and grave's thyroid eye disease in jan. 2009. at the end of march i had my thyroid removed. never let anyone use the radiation treatment if it is in your eyes. my surgeon said if we had waited another week i would have been dead. they started me on 75 mcg of levoxyl. it made me mean, i prayed to God to let me die in my sleep every night. the dosage was changed to 88 mcg. my hair was falling out by the handfuls. i kept calling my dr. and being told it was normal. i lost 75% of my hair mass almost to non reversible. i have been on appearex and women's rogaine once a day and am using nioxin hair cleanser and conditioner for 2 months. i have new growth thank goodness. my toes almost froze off my feet, the headaches cannot even be described, i gained 40 lbs, this will be the 3rd time in 7 mos. they need to change my dosage to 100 mcg. my body cannot take it. today i am starting synthroid. until i found this site today i had no idea most of my agony was from levoxyl and it's side effects. thanks so much for all the information. good luck to everyone.

I have been on Levoxyl for years. I was diagnosed with Hashimoto's when I was 13 years old. I'm 35 now. I have been on every medication made and this is the only one that didn't make me want to sleep all the time. I have suffered from Depression my whole life, but that started before the thyroid too. My mom was one of the first people to be treated with Iodine when she was a kid and it worked for years then her thyroid acted up again in her 50's. When she was younger it was Hyper and now it went Hypo. She takes Levoxyl now too and it's been great. I think part of my problem has always been a lack of exercise. A lot of the symptoms everyone has mentioned went away for me when I started hiking and walking regularly. After being inactive for so long due to the depression and exhaustion because of the poor diagnosis of my thyroid medications for so long, my blood pressure was too low, my circulation was poor and my depression got worse . Now with a combination of meds for my depression and my Levoxyl, I don't feel like there is a giant weight on me when I wake up in the morning. So many of the meds described have similar side affects I've stopped judging by side affects and rather my energy level, my weight, goiter size and sleep pattern.
Just my experience. Good luck to everyone

Thank you all for posting your experience with Levoxyl. My mother started to take this med about a year ago or so. She has experienced all of the side effects listed in postings. I thought she was going crazy. She actually found this site and e-mailed it to me. WOW!!!!!! We have been in and out of doctors (numerous) and hospitals for testing. All test results came back with nothing being wrong with her. She actually just went to Catholic Medical Center in NH (this hospital specializes with heart problems) last week because she too thought she was having problems with her heart. Thankfully all is o.k. She has now taken herself off the Levoxyl. It is amazing what we think will help us can do so much harm to a person. Good Luck to anyone who prescribed this medication. DO YOUR RESEARCH FIRST!

D.NH

I started taking thyroxine about 6 weeks ago - i went to the doc with tingling fingers, bloods showed tsh 34 so doc gave me 50mg thyroxine. Felt awful within a few days i was getting palpitations and felt like my skin was crawling. I couldn't bear even the slightest noise. I had diarrhea (cant spell) fast heart rate, the shakes and couldn't handle lots of people in a room. I am a teacher so it became difficult for me to work. I went up to 100 it got worse, until in the end I decided to stop them.
I am going to wait and see but I would rather be hypo than have these symptoms, my doc said you will feel great soon, pah what a load of c%%%

I've been on the same dose of Levoxyl (118 mcg) for 11 years and I have none of the side effects that have been described. My mother and grandmother also have hypothyroidism, but my mom take 110 mg of synthroid, also prescribed by the same doctor that prescribed me. When I was in the 4th grade my thyroids swelled to the size of golfballs, so much so that you could see them when my head was up, and I was extremely tired and had hot and cold flashes- scary for a 10 year old! My doctor recognized it immediately, and put me on Levoxyl. About a year ago, I gained 15lbs for seemingly no reason, but then this summer I lost about 20lbs. The only difference was taking the medicine 1 hr before I ate anything. I saw someone said that after taking the medication she would get hungry, which I also have, but this makes sense, because Levoxyl is in essence trying to up your metabolism and by doing this you are burning more calories and thus become hungry. If you let this hunger pass, about 20 min later you are no longer hungry and feel great! I still get slight hot flashes, but not too noticeable. I would recommend just as other on here have, that the dose that your doctor may give you may not be 'your' number, and to give it time. If you change your dose, give it 3 months, not 5 days like I saw above! If you have to wait 6 months for 2 dose changes isn't that better than hurting your whole life? GOOD LUCK!

Hi l have it all too and more!! I am so fed up :( lm cracking up! Does any one get sternum area pain cramps? They scare me the most l cant move :( Sick of docs passing me off grrrrrr

I have been taking Levoxyl for 1 1/2 yrs, I had my thyroid removed due to severe hyperthyroid. In the past year, I have been getting pains and weakness in my hands. It is so bad now, I can't open a jar or lift a frying pan. It hurts sooo bad. My legs hurt and my knees have real bad joint pain.
The funny thing is, it's not every day and not always both knees. It is however all the time in my hands. Last week I went to an Arthritis specialist in San Antonio. He ran every blood test avail. Tested for Rhum. arthritis, Lyme disease, AA, and all kinds of stuff. He x-rayed my knees and injected cortisone in my knees and hands. - that hurt -
He found nothing wrong!
I searched on line tonight for "Levoxyl and joint pain" and this site came up. Boy am I glad I am not the only one who is questioning this horribly possible side effect. Oh, I also have memory loss. I feel like I am 80 yrs old. Just to make sure you know what type of person I am, here goes: I am fit, active, 37 yrs old and 115 lbs, I eat well and take vitamins, non smoker, non drinker.
On Monday, I am calling my doctor. I am printing this web site and all of the postings like mine. There must be something I can be put on that will fix this. Can anyone tell me if they have no Thyroid and have gotten off this stuff; does the hand pain stop? Does it get better or is this permanent damage?

Kerrville TX

I have being taking thyroid medicine since 1994. I was diagnosed with Hyperthyroidism and prescribed Synthroid. It didn't work. Instruct to take radioactive pill. Now, diagnoses change to Hypothyroidism. Prescribe Levoxyl. Endocrinologist said I would lose weight, but instead I have gone from a size 8 to 16. I feel really bad when I miss my doses. Really anxious when I take it every day. I am noticing that I have moles growing out and spreading all over my body. Switch back to Synthroid three months ago. That when start experiencing a great deal of hair loss. Decide to switch back to Levoxyl but a lower dose. The hair loss has slowed down a little. But, hair is growing slowly. I am having problems focusing and some memory loss. I really don't know what to do. I have change endocrinologist twice. I really think that Levoxyl and Synthroid have bad side effects on human after long term usage. I am miserable because I can't control my weight. I know that it has something to do with this medicine. If anyone know of some other medicine that would Hypothyroidism in check without all of the side effects that I mention. Please share it with me.

I HAVE BEEN TAKING LEVOXYL FOR 22YRS AND I FEEL LIKE I CAN NEVER GET SLEEP,I TAKE MY PILL IN THE MORNING AND CAN'T SLEEP ALL NITE AND AM TIRED OF IT,I WISH THEY HAD AN ALTERNATIVE.THAT WAY I CAN SLEEP AND NOT BE DEPRESSED ALL THE TIME

I was prescribed 25 MCG tabs of levothyroxine (generic for Levoxyl) by my MD for my hypothyroid. (I was tested at a 4.5 reading -- just below a normal 5 reading). After 60 days of taking levothyroxine EXACTLY as prescribed (i.e.; on an empty stomach, 1st thing in the morning with a glass of water; no vitamins for at least 4 hrs afterward), I started to have symptoms that I've never experienced before: my hands began hurting so bad with joint pain; my lips felt numb; and I was sweating more than I ever had in my life. I decided to stop taking the medication due to these symptoms, and in about 7-10 days from stopping, ALL these symptoms had disappeared and have not returned to date. I relayed this information to my MD who told me that my symptoms had nothing to do with Levothyroxine and that I needed to continue taking the drug. It's more than strange to me how some MDs will not listen to his/her patient -- even more so now that I've read other info on the internet where many other people have had these same side effects taking levothyroxine!! On my own, I am now looking into taking an all natural alternative that I found on wellness resources called "Thyroid helper". I will not take Levothyroxine again if I can avoid it by taking an alternative. Has anyone else out there had success taking "Thyroid Helper"?