Levoxyl and meds

I have been on Levoxyl 0.112MG for about 18 years. I do have some of the symptoms described by others, hair loss, hot flashes, etc. , but I think the alternative to this is a lot worse. If I do not take it for long periods of time, it gets to the point where I am freezing cold and the bags that develop under my eyes are embarrassing. I think the problem with most of you that are having very bad side effects is the dosage. If the amount is off just a little bit you can feel like you were just run over by a truck. I went through this many years ago. I would suggest continuing to change the dosage until you get it right. I wish I did not have to take it but it is absolutely necessary in my case.

Wow, what an eye opening experience it is to read all these posts! I was just about at the end of my rope thinking something was horribly wrong with me. Now I firmly believe it's the Levoxyl that is wrong.

I went on thyroid meds about a year and half ago for just slightly under active thyroid. I was actually lulled into it because the Doctor assured me it was a completely safe medicine and taking it would help me lose weight. Always a welcome thing. So I started on 50 mcg. I noticed some degree of improvement. I was sleeping better and having more energy during the day. Next checkup, the levels are in the normal range but just barely. So he doubled the dose. Two weeks later I broke out in a horrible itchy rash. I actually thought about the meds but then I didn't change meds, I was just taking more. I called the doctor and he said, "No this medication won't do that." So I change detergent, soap, everything I could think of and nothing worked. Finally I said, enough and I skipped a dose. During the day the rash got a lot better. Next morning I took another one and within and hour I was itching like crazy again. I stopped taking them, waited a week and called the doctor again and told them. His reaction was "You have to take this." I said, No, I don't and I won't. He actually argued with me that the rash could not be caused by the meds. Now I realize at that point I should have called another doctor but he's in my town, convenient, yada, yada, yada. Anyway he called me in another med which he said was the same active ingredient but different brand. Enter Levoxyl. I've been on 100 mcg for 3 months during which time I have felt progressively worse. Most of these things I didn't attribute to Levoxyl until later. Initially I noticed I was having the hot/cold flash thing. I have no comfort zone. I'm either flushed and sweating or chilled so my nights are spent constantly either searching for cover or kicking it off. Next thing I noticed is that my breasts would swell. Naturally that was a concern but about the time I would decide I needed to see about it, they would be normal for a few days. Sleep? What's that? Tired all the time. Started having confusion and forgetfulness. I even told my co-worker I thought I was losing my edge. I was all of a sudden forgetting things I had done automatically for over 15 years. Then the really scary stuff started. I would wake up in the middle of the night with my heart racing and feeling like I was in a fight for my life. I was afraid to go back to sleep. Joint aches and pains across my upper back, my knee. Tingling in my feet. It just keep getting worse and worse. Still didn't think of Levoxyl. Then Monday of this week I didn't have a pill to take. I forgot to get it refilled. Monday at lunch I told my husband I felt better than I'd felt in months. Tuesday took the regular dose. By noon the mental fog was back, back was hurting and I just felt like crap. Tuesday night went to bed early because I was so tired. 11:40 woke up with the worse anxiety attack I've ever had. Heart was pounding and I was breathless. Wednesday morning I got up and the light came on. I did not take the pill. Entered Levoxyl in google and found this site. I am so angry at my doctor I can hardly stand it. I even went to the official Levoxyl website and all these side effects are listed except for the swelling breasts and confusion but I've noticed several posts here that list those. During those two days I didn't take the freakin' pill both problems improved greatly. This morning, I reluctantly took half a pill. I plan to to that every other day for a few days then skip two days, then three, until I'm off of it. I don't know at this point what I'll do about my thyroid but I won't take this stuff and I won't ignore feeling like crap again. This is crazy. Where is the FDA? Oh yeah, being entertained by the drug companies. What a shame.

Thanks to everyone who has taken the time to post here. It is a sad commentary when we can't rely on our doctors to take care of us but we sure can't. If he had just told me about the bone loss, I would never have started this drug in the first place. My Mother suffered with that and that is something I would not trade for a few lost pounds and a little more energy. No thanks.

I have been taking Levoxyl for about 2 years. I have told my Endo doctor many that I have had headaches, nausea, stomach pains and have gained 40+ pounds in the 2 years. Every time I go in to review my blood tests and tell her I'm not feeling right I get the same respondents as a lot of you; they are you sure you are not pregnant? you need to change your diet and eat right? you exercising enough?...The Dr always seems to ignore my symptoms. The last 4 weeks have been Hell for me...I woke up one morning thinking my stomach was going to burst. I went to the Er. They did an ultrasound...found nothing..gave me stomach reflux meds and I went home. 2 days later the pain was a lot stronger right under the center below my rib cage. Went back to the er. They gave me more protonics and gave me a gi dr. I went to the GI doctor and got a contrast scan and then a scope. They of course found NOTHING. A week later I woke up again with the worst pain yet and the cold sweats...to the point where I was going to pass out...Went back to the Er where they gave me a cat scan. Everything was perfect the er doctor said. "They said they couldn't tell me what was wrong". I knew I wasn't going crazy and having all these symptoms but no one could explain why or what is was. I was getting fed up of being sick...So I took my Levoxyl like I do every morning and within 15 mins the pain was back. I went online to look up the side effects of Levoxyl and found this site. Its great to know that I am not the only one out there with these side effects from this medication and am not going crazy! I made an apt with my Endo Dr today called and told her this med was making me sick. She made me have an apt with her assistant. I printed off this page to show her I wasn't alone. As of today I am off of Levoxyl. Thanks to the new Dr who FINALLY listened to me. I do not have to take any other form of this med either. Since I just had a nodule not hypothyroidism. Please Can anyone tell me what they went through from withdrawal from this medication? and anything that helped it go away? and How long did the "detox" from Levoxyl last?

37 - Dx'd w/ Hyperthyroidism at 20 and have been on levoxyl since then. I started at .075 and was increased to .1 when I got pregnant w/ my 1st child at 29. I always thought I had anxiety so until I started reading the posts I didn't put it together. I was always shaky and nervous and super skinny before I was dx'd with hyper and after the treatment I was still anxious so I thought it was a different problem.

The anxiety has gotten much worse in the last few years w/ pressure, family, and career so I went to a psych last week and he gave me lexapro and klonopin. The klonopin had done nothing and I was treated 10 years ago with Zoloft which made things MUCH worse so I won't take the lexapro.

I recently switched to Synthroid .1 because I thought maybe the generic meds didn't work as well. I developed a small rash on my elbow a week or 2 later, then a week after that I got 2 big patches on my back over my kidneys. A bout 2 weeks later I developed a HORRIBLE itchy rash over my whole body. I thought the itching would drive me insane. I saw a dr who gave me prednisone (made me feel awful), after I took the dose pack it came back like crazy. I went to the ED and the dr gave me scabies medication (I was mortified) but nobody else in the house had anything. I went to the derm and they biopsied two areas and a week later have not given me the result. Meanwhile, I'm back on levoxyl and the rash is slowly getting better. It must have been the cause. Anybody else get that??

Hello... I started taking Levothyroxine last July for slight hypothyroidism. I felt great for the first 6-7 months, but then in January the problems started for me. I was getting severe anxiety which the doctor said was stress and he also thought I was depressed. I knew I wasn't, but he put me on Ativan and Prozac. The week I took prozac was the worst week of my life. I thought the effects I had were from the prozac, but now I know now it was my thyroid spiking, which the doctor never checked my levels during this period. My heart rate doubled, I had insomnia, was gagging, sick, felt like my body was on speed and wanted to die. I was prescribed a beta blocker for my anxiety previously which I had never taken, but decided to take when my heart was racing, which helped me feel a bit better for the week, but I knew something was wrong. I had this happen again recently for about a week (and I was on nothing but levothyroxine). I know what anxiety is and I have never had anxiety or depression my whole life until these episodes that happen when taking this medication. By the time I went to the doctor to get labs done, I had been feeling a bit better and he said my levels were fine. I am now wondering if it's side effects from the meds or if it is spikes in my levels making me hyperthyroid instead. All I know is that I cannot live like this!! I have a 3 yr old and I need to be happy and healthy like I used to be before this medication... no more heart racing, racing thoughts, anxiety, and insomnia. Please help!!

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

I have had great experiences with Levothyroxine. I am no longer tired, achey, grumpy, constipated. I feel great. I am only 27 years old and got my hypothyroidism from having my first child. I am excited that my levels are now normal after 3 months (TSH was 25.89). I was on .50 mcg now I am on .75. Feel great!
I am a medical technician and have found that a lot of people who start on a certain medication for hypothyriodism, such as Synthroid - do not fair well if they have to switch. My doctor always says NOT to switch...not EVER. She repeats over and over again to check my prescription every time I receive it. That means checking the pills against each other, because hypothyroidism medication is one of the highest missed - filled prescription. If I were anyone who has had to switch, I would demand to be put back on your original meds. Have your physician write up your symptoms with the new meds and make a recommendation to the insurance company that you NEED synthriod.

ive been on levothyroxine for about 6 years...... for an underactive thyroid gland and i am stunned reading all these side effects as for about 4 years ive suffered from severe joint paint, fatigue ,very low moods , foggy brain, mood swings hair loss, all i want to do is sleep and even then im still tired.
I am 35 and feel about 80 as my back hips legs calfs and feet all hurt so bad.
I have been to the doctors so many times and got no where.
ive been told your in pain because your depressed( who would not be depressed ) but i said i am depressed cause im in such pain.
i remember asking once if it was due to the thyroid or the drug and the doctor said your levels are fine and the drug gives no side effects.
I feel like stopping it right now to be honest.
I only got it after my third pregnancy and i remember reading once it can correct itself as it could be caused by pregnancy ????? any ideas.
ive copied and pasted a lot of these comments and i will be making a trip to doctors to be fobbed off again im sure ....but its worth a try

Hello, told my doctor today of leg cramps, facial rashes and numbness in feet....and specifically asked if they were related to Synthroid? He said no, I have been on it for 2months...and just upped script to .50mcg....and cramps are worse....I am going off the meds. I am in excellent health @ 64 and only went to this Doctor because of back pain.....was tested for a myriad of things...I had none of the symptoms for hypothyroidism.....what natural remedies are there for this . E.

All I can say is WOW! I did a search for Levoxyl side effects because in the 2 weeks since my dosage has gone up (200 mcg) I have had a constant headache and my entire body just aches, especially my hips, legs and knees. I have a hard time sleeping because I can't get my knees in a comfortable position. I do have arthritis which has not really bothered me in over a couple of years and this is not the same as my arthritis pain. It is more of an overall achiness and it feels like my bones are sore. I am also having eye twitching occasionally, but I am not sure if that has anything to do with it. What should I do?

Boy, this could take a while. Have been on generic Levoxyl for more than 7 yrs(can't say exactly how long since I stay "fuzzy headed" all the time). Anyway, about a yr ago I became so depressed I went off all my meds -- I'm a diabetic on insulin and also have high blood pressure. I felt good!To try and make this story a little shorter, I went on a diet and lost 70 lbs -- went from 310 down to 240. Then I went back on meds. In less than a yr, have regained all the weight I lost. Also, my legs swell and ache so badly it makes walking painful. Hands, wrists and knees throb constantly. Intermittent headaches so bad I have to wear sunglasses just to tolerate indoor lighting. Hair loss is so severe I'm considering a wig. Skin is dry and itchy and lotions help not at all. Any work I have to do I must accomplish before noon because by early afternoon the fatigue is debilitating. I'm currently on 300mcg of Levothyroxine (up from 250mcg 2 months ago) and doctor wants to increase dosage even more. Had no idea there were other people suffering the same problems until I stumbled upon this site. I take the medication as prescribed (with perhaps less than the recommended full glass of water) but plenty of coffee. Discovered on another site that the coffee may be inhibiting the drug's absorption. I feel so helpless/hopeless. Am considering going back off the Levothyroxine but am seriously worried about high T3/T4 levels. Thanks for listening; guess I just needed to vent.

I was put on Levoxyl for 20 years. Hair kept falling out, muscles aches, acid reflux, plantar fasciitis, carpel tunel, tired, cranky, brain fog. I could barely walk and had developed a stutter. I was to be tested for Alzheimers at 45. I was told there was no other drug for hypothyroidism and it wasn't the Levoxyl doing these things to me.

Well I found another drug thanks to the internet and Yahoo Natural Thyroid Group. It was Armour. I have been on Armour for about 2 years now. All those problems I had on Levoxyl are gone. Completely GONE! Wasn't the Levoxyl huh?

I too was a picture of health even with my TSH being off. My old doctor retired and a new one prescribed the levothyroxine.
I never have felt so rotten in my life. Extreme fatigue to the point I am given up many activities I've been involved in for years. Headaches and joint and body pain. I feel like I was hit by a truck!
I stopped the meds and felt fine..cept my cholesterol went up to 262 and my tsh 7 something.
The doctor scared me back on to the levothyroxine.
I am desperate. I wish I knew what to do.

I've been taking levoxyl for 8 years now with mostly good success. My endo doctor recently upped my dose due to lab results (I think the test results were bad). Now I feel horrible. Headache, dizzy/lightheaded, blood pressure increased, tightness in throat, and muscle cramping. I've been to many specialists concerning the dizziness - everyone says I'm OK; cardiologist, ENT, and neurologist. The symptoms started a few weeks after the dose increase, and have worsened in the last week or two (about 2.5 months out).

I have been on Levoxyl for about 9 years and have felt awful. I have had weight loss, dry hair, thinning hair,dry skin, muscle aches, migraines and the list goes on. I just got out of the hospital Monday after 4 days of testing of my heart and lungs. I was admitted for racing heart. The doctor's conclusion was anxiety! They said that Levoxyl has nothing to do with my rapid heart rate. The endocrinologist prescribed taking levoxyl .050 on day and .075 the next also a beta blocker, Xanax and Zoloft. I can not take any of these meds b/c they make it almost worse. I KNOW it is not Anxiety and it from the Levoxyl but what do I do?? I am a mess right now can not be in this condition with four young kids and a husband. None of the doctors would say it was the Levoxyl and instead prescribed more and told me to check up with blood work in 6 weeks. I took the .050 yesterday around noon and by 7:30pm my heart rate picked up again and continued until 4:30 this morning. I can not sleep more then 2 hours at a time and wakeup feeling like I am crawling out of my skin. PLEASE let me know of any solutions.

I am so happy to hear this from all of you!! I am 26 years old and was diagnosed with Hashimoto's disease at 17. About 2 years ago my doctor switched me to Levoxyl and my whole life has changed. I got really irritable around my best friend's kids, sharp pain in my left ring finger, TOTAL LACK OF SEX DRIVE (which everyone thought was psychological), and I've become a total couch potato. My relationship with my boyfriend of two year has been up and down because of the lack of sex and laziness. I'm calling my doctor and asking to be switched from this. I am so happy all of you have written about this. Please keep me updated if changing meds has helped at all?

I am just slightly hypothyroid and could go without meds, but decided to try meds, and endocrinologist suggested Levoxyl 50 mcg per day. First day on the drug, felt exhausted by night time, next morning, usually jump out of bed for workout and was extremely tired at the gym, no energy, was starving during the day even after breakfast which is unusual for me, and exhausted by evening, and third day woke up with swollen glands and exhaustion, knew something was up. Decided to research the side effects and found others with similar symptoms and didn't like long term effects so I am going off the drug and hoping I caused no damage to my system. My doctor's reaction was "impossible" that the drug could cause this. My reaction was, "no thank you, I think for myself, know my body, and know this drug caused this reaction." I was feeling fine before 3 days ago, and how could so many have similar symptoms if it isn't the drug.

I have been on Levoxyl 125 mcg for about two months after my thyroid was "killed" with the radioactive pill. Ever since I have been on this medication, I have constant headaches and feel sick on my stomach all the time. I had to go to the ER the past week because of the intense vomiting. The doctors tell me it's not related to my thyroid or the medication. How can this be? I didn't feel this bad when I was hyperactive thyroid. My wife has had to take care of our 18 month old all by herself ever since I have been taking this medicine. I feel like I am missing out on my life! This is terrible!!

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