Body Aches and Levothyroxine
Posted , 6 users are following.
I need some help from others who may have had problems with Levothyroxine.
I have been on a low dose of levo (.375) for about 15 years. About 4 years ago I gained about 8 lbs. in a month. I saw a doctor who said my thyroid was a little sluggish, put me on armour and said it should help. I remember taking the armour and felt a zing though my body - not a good zing. I tried it a for a few days and couldn't take it anymore so she put me back on levothyroxine and upped me to .50mcg. When I took it remember not feeling right - I checked the labels and it was exactly what I was taking before, just a little stronger dose. I shrugged it off figuring it was all in my head. A year later I saw my primary doctor at a physical and I was complaining of body aches and pains - I felt like I had arthritis but wasn't swollen. She sent me to all different doctors to check for arthritis, lupus, ms, bone problems, and (thankfully) everything checked out ok. The only thing that showed up was a high ANA and thyroid antibodies which were pretty high. A couple of months later I had sever muscle pain that started in my arms (could not even lift a case of water) then after 2 or 3 months it just went away and it then happened in my legs (couldn't get up from a sitting position and had a very difficult time walking) - again lasted 2 or 3 months and then just disappeared(thankfully) just as fast as it appeared.
I decided to see an endocrinologist. He told me the pains were not thyroid related. He upped my dose and changed me to synthroid. Life went on as usual - next visit he upped me again. Funny thing is I never felt any difference when taking these thyroid meds - because I never started them because I felt bad just a high tsh. At my last appointment he asked how I was feeling I told him ok - I just have the fibromilagia pains.(no one every actually diagnosed me as I kept getting passed around from doctor to doctor with a "you're fine" pat on the back) My tsh level was a little high so he upped my dose. I took my first dose and by the end of the night I was very achey. I continued for 2 days and by the 3rd day I couldn't get out off bed. I decided to try not taking the medication and after 2 days I felt so much better. I asked to switch to tirosint (thinking it was the fillers) I just tried that and the exact same thing happened...I couldn't move . I gave it three days and then I stopped. I have now been off it for 3 days and I once again feel much better. Not 100% but much better - enough to know that it is the levothyroxine that is causing my aches) I feel like I was poisoning myself all these years and I can't help but wonder if I caused my thyroid antibodies to kick in because it didn't want the levothyroxine.
Has anyone else had problems with levothyroxine? What did you end up doing to make yourself better?
0 likes, 11 replies
MtViewCatherine Jeannie62
Posted
Hi Jeannie, your observations are correct. Did you happen to look at the manufacturer’s side effects of the meds?
Levothyroxin causes hypothyroid disease, fibromialgya, lupus, ra... if you read the posts of other patients, it causes everything from halitosis to vertigo. I had migraines so bad, I feared I’d have a stroke. I had many otger symptoms including eorsened thyroid disease. Yes! IT ACTUALLY ACCELLERATES THYROID DISEASE!!!!
My experience is that this medication didn't work at any dose. The higher the dose, the worse the side effects. It does cause TSH to decrease, and shows positive in blood tests for T3, T4, but doesn't seem to have proper biological activity. Basically, a medication that shows you should feel better by your blood work, but its really just a placebo with horrible side effects.
Try ThyroGold and essential amino acid complex.
Jeannie62 MtViewCatherine
Posted
Thanks! I just ordered the essential amino acid complex. Hopefully it will help. I'd like to get the levo out of my system and then check my blood work again before I try the ThryoGold. I actually just took Thyroid Support by Zhou. I'm still waiting to get a call back from my doctor.
MtViewCatherine Jeannie62
Posted
Jeannie, that’s great! You’ll have to play around with the dose some. If its too low, it could seem like it doesn't work.
Keep us posted on your progress!
janine26943 MtViewCatherine
Posted
JulieAnne101 Jeannie62
Posted
Yes very similar reaction to levo. The muscle spasms in my legs got so bad it was dangerous to drive. If I continued to take levo, I would have had to stop working and claim off the state!
I now take Liothyronine which I understand is a more natural form of t3 and seems to suit me
Kind Regards
JulieAnne x
Jeannie62 JulieAnne101
Posted
Thank you for your reply! I will have to ask about the Liothryonine. I asked about testing for t3 and I was told that he didn't feel the need to test me on that yet. Not sure what his reasoning is or what the "yet" meant. My thinking is that if I am taking the levo (112 mcg) and feeling like my body is yelling at me to stop, and my tsh keeps climbing (even though it's very small amounts) it may not even be working! I still have a thyroid and I hope I haven't done it more harm than good over the years!
claire30897 Jeannie62
Edited
Hi Jeannie, yes....I suffered weakness in my muscles and hips - so much so that my left leg in particular would give way randomly causing me to stumble (dangerous if crossing the road!) I also had a pulsing ache above and behind my left eye, and general aches & pains that would appear then disappear without any reason. I was on 125mcg for several years and one day when I ran out of the 25mcg accidently, I just took the 100mcg for a couple of days until my prescription got renewed. In those two days I felt SO good! No pain and full of energy. I have continued with the lower dose of 100mcg under guidance from my consultant - although my bloods are showing a little under the "desired" results, which seems to be causing a bit of concern for everyone apart from me, because I feel so much better. I honestly believe that the fillers they use in these medications are causing the problems we are suffering (just my opinion, not based on fact other than what I have read on the packet info). I can't think of anything else to try which you haven't done already, but I do suggest you keep on at them to find an answer. Nobody should have to live in pain if there is a way to stop it!
Jeannie62 claire30897
Posted
Thank you for your response! Thinking back I felt my best when I took 1-1/2 25 mcg tablets of levo. Once I was increased to 50 mcg I started with the aches. Over the past couple of years I did think it was the fillers so tried tirosint (which is suppose to have no fillers/colors) and I felt the same way. I have seen the orthopedist, rheumatologist, and finally (because of high thyroid antibodies) the endocrinologist. Just recently I tried the tirosint again and felt the same as when I take synthroid. It never dawned on me that I could be having a reaction to the levothyroxin itself as I was told that it is a hormone that our body makes.
My tsh levels are usually around 2.4 (this last increase (from 100 mcg was due to it being 4.5) and my t4 is usually around 1.2 . I can't help but wonder if I have made my antibodies kick up because of the levo - and I'm not sure why it would rise if my body was utilizing the 100 mcg. I guess I wonder if these aches all these years was my body rejecting the levo and I wonder what my body can now do on its own.
Jeannie62
Posted
Thank you for all the replies! I heard from my Endo and he prescribed liothyronine to take along with the levothyronin! I asked if I had to take both being I have so many problems with the levo and I was told yes!! I am very frustrated. I did have a talk with my pharmacist (I'll add that she was surprised that he didn't at least lower the levo dose) and she said if I am not taking it and haven't felt any problems yet, then I should just wait and see what happens. She said that quite a few people can't go a day or two without it (I know we are all different) and that my body will let me know if/when I need it. She was not surprised at all when I told her I felt achy when taking it. I still can't help but wonder if my body has been yelling at me all these years and finally had to send out the troops to fight the levo off (the thyroid antibodies!) lol!! Anyway, I did pick up the prescription but I haven't taken any yet. I am really hoping to be able to last until August when I have my physical so I can see what my numbers are (actually I wish I had a test where I could monitor it myself!)
Farmgurl Jeannie62
Posted
Hi Jeannie,
I see this was posted @ 4 years ago, hoping you are still on the forum.
I have exactly the same symptoms and experience with Levo. I had a TT a little over a year ago, I take 100 mcg daily. Exact same symptoms come and go.
I'm curious if you found a remedy. If so please share.
Thank you!
janine26943 Jeannie62
Posted
I also would suffer from painin my arms in my hands and sometimes I could not get out of bed because of my feet, when I stood on my feet icould hardly walk because of the pain in my feet. My hands and fingers seemed to feel like arthritic but usually in the morning after waking. I also take lyvothyroxine. I started taking this and back in around 2015 and they put me on quite a high dose. However the pain was not back in 2015. I stopped taking the levothyroxine for a totally dideret reason in around 2016 because I was getting mood swings. I stopped it of my own accord. Some time in 2017 I went to the doctors for something, and they asked me why I was not taking the levo thyroxine and I told them what I have just told you, and they said it was dangerous and that I should start taking it straight away. I explained my reasons for not taking it, and they said to start on a low dose, and have blood tests done each month and find the right dose gradually, so I was comfortable increasing gradually. Around the same time of starting to take it again, I experienced all the symptoms as I described above. And although, I could not work out what was causing all my pain in my arms fingers and feet, I put it down to perhaps it was my bed. As I have heard that your bed can cause discomfort if you have a cheap mattress, so I bought a memory foam mattress topper, and since then I can safely say that my pain (touch wood) has disappeared. Is this coincidence? I am taking 75mg and since my last blood test did not require anymore 'upping'
But when the pain was there it was there for a good few months and has disappeared so I wish it will stay away. I hope your pain does not come back. But its weird how it disappears for you and then comes back!? If I start to get any more pains I will seriously look into this levothyroxine, especially as you have had the same pains as I have. Is it highly coincidental for us both, or is it possible that it is a possible side effect, ie as you suggested our thyroid antibodies kicking in because it did nt want the levothyroxine?
I perhaps can suggest you try to check if your mattress is also pasrt of the problem? Even if it is only a small part of the problem , perhaps turning over your mattress over every couple of months, and if that doesn't do the trick buy a MEMORY FOAM MATRESS TOPPER of approx. 5-10cms to put ontop of mattress, if nothing else, you will have a good nights rest! Hope this helps, let me know how you are doing!