My Dr started me on levothyroxine 2 months ago stating I had an interactive thyroid problem. Since starting this medication I've experienced severe leg pain/cramps, arm, elbow, wrist and hand pain, almost like I have carpal tunnel. My shoulder hurt and I'm crippled. Almost like I'm a 90 year old. My Dr switched me to a higher dose and I started getting more of these same symptoms. I talked to my Dr and she said to keep taking it that I have no other options. But I was functioning better than I am now taking levothyroxine. I'm frustrated and I'm increasingly feeling like an invalid due to these symptoms. I'm wondering if anyone else has had this happen to them?
Hi there
Has your doctor checked you reverse T3 cause that can give you hypothyroid symptoms if it is too high even if your TSH is normal.
I have a sensitive system and took Levo for 7 months with all the same complaints that you have. I thought I was dying. I searched out a naturalistic doctor at the advice of the Endo I was seeing cause she told me she cannot give me anything but Levo due to the contracts with the manufacturers of Levo. So when I got my natural doctor I went on Armour but it contains aluminum and so I switched to naturethroid and still it was not right. I am now on Cytomel 20 mcg a day. I do not think it is still quite right and we are adjusting according. But my reverse T3 is gone and the body does not need it anyway. I gained from 165 to 203 on Levo and lost 10 pounds when I went to Armour and Naturethroid and now I am 180 pounds on Cytomel. I am slowly losing the weight I put on. Also the water retention has diminished. I would gain on top of my weight 7 to 9 pounds of water. The joint pain that I had was so terrible and especially with the swelling from the water retention while I was on Levo. I still had terrible water retention from being on Armour and more with Naturethroid but the doctor began checking my progesterone levels and my ratio was so low on the progesterone compared to my estrogen and so she put me on 200 mg of natural progesterone daily and I am just now beginning to feel like my ole self again before I got hypothyroidism. I am amazed at my progress. I am still thinking I need a bit more progesterone because of the water retention but my water retention has diminished also. I now retain only about 4 pounds of water instead of the 7 to 9 I was retaining every day. My clothes that have not fit me for a couple of years are finally beginning to fit again. My advice to you is if you are able to search out a natural doctor then do so. To get to Cytomel you will gave to try at least a couple of the other natural meds. Most doctors are reluctant to give a t3 only med. Endo's do not like to at all and many refuse too. I do not take any T4 only T3 and I am doing great from what I was doing. But I started on Levo and if I had known what I know now about Hashimoto's I would never have went to an endo or been put on Levo. Not everyone can take Levo. I really wish you well in your Hypo journey to wellness.
But be sure to tell your doctor right away the symptoms you have. If you feel that you cannot take Levo then tell your doctor you need something different. See lf they will give you something else. It causes terrible joint pain. I had it so bad I could not make fists in my two hands. I was so glad to get off of Levo finally. Keep up on your vitamins cause that helps the joint pain and get your hormones checked especially your progesterone to estrogen ratio. Good luck!
Cameron
Read the side effects of levothyroxin. What you’re experiencing is not unusual and could indicate the possibility of worsening problems with time on this medication.
I went through a bunch of different mes. Unfortunately, after two plus years on the Levo, I can’t tolerate anything and now take essential amino acids supplements for my (advanced) thyroid disease. Worth a try.
If you want something more bioidentical, a ThyroGold is very good- my mother takes it and it’s done wonders for her.
Thank you very much for responding and for the information. I appreciate it.
Thank you for responding and for the information. Any information helps me discuss this more with my Dr. Thanx again.
Hi . I am also suffering neck shoulder arm wrist pain.feels sore too. I'm havingvtrouble sleeping on my side it hurts so much. Been getting flare ups regular now, however my bloods have come back hypo, meaning I need to up my dose . It never seems to be 100 % stable . I was thinking it could be fibromyalgia I had after reading the symptoms of that. But now I've seen this it could the levothyroxine.
Hi there
I have Fibro also and usually you would get pain all over your body to move. You can tell if you have it when you are active a few hours then you sit for about an hour and when you get up every muscle in your body will ache. Or when you lie down after being active a while. Then try to rise.
It sounds to me like the Levo could be causing problems for you. I will never take Levo again.
My doctor wanted me to go to another Endo and I just searched out another natural doctor cause I had fear of the Endo putting me on Levo. That is some awful stuff.
Levo will cause stiff joints as well as water retention in your limbs and fingers and toes and ankles. Nothing to mess with. It seemed the more higher of a dose of it I took the worse i got!
I know everyone is different and this med will affect everyone differently but according to an Endo at least mine I went to it is the best med for hypothyroidism for everyone. She saw no difference between people.
Good luck to you in your search for wellness.
Cameron
Thank you so much for responding n giving me this information. I'm so glad I'm not crazy n that other people understand what I'm going through. I'm definitely going to discuss all this with my Dr. Thank you again.
Hi thank you for responding. Sorry to hear you are going through this. It's an awful feeling n I'm so sick of feeling this way. I'm researching as much as I can to try to get this under control as I cannot continue to live with this kind of pain. I'll continue to talk to my Dr and see what other options I can get because as of now I stopped the levothyroxine. Good luck on your health with this situation also.
Thankyou for all the info I am reading I shall mention this to my doctor. I was originally hyper . Ended up having RAI as my reading was off the scale . So unfortunately now on levo . Hypo at the moment having to up my dose .
Hi I'm reading alot about this levothyroxine and have came across so much info I'll share with my dr. I'm also going to mention how they changed the formula of levothyroxine in 2017 and how many people are experiencing these same problems I'm having. The site I read was there have even been lawsuits filed against Merck for changing the formula. I just am looking for as much info as I can find since taking this levo has changed and impacted my life so much. So thanks for responding.
Fibromyalgia can be a side effect of levothyroxin. Also arthritis and other autoimmune disease can be caused by levothyroxin. Since thyroid disease is (predominantly) autoimmune, it seems that a substance known to induce autoimmune disease, would not be desirable , as by its nature, it would worsen the problem.
I have just raised my levothyroxine from 50mcg to 75mcg and I am not sure if it's a coincidence or I had just had a flare up, but my shoulders neck etc are starting to feel a little better today . ( My bloods came back hypo) was getting bad eye pain too. Migraines.
Lisa, no coincidence. Search side effects of levothyroxin. It causes pretty much anything you could ask about.
I have to agree. I don’t think I’m particularly unusual. I had a horrible reaction to the Levo and have many problems now because of it. I would never re omens anyone risk the sort of side effects that Levo causes. Not only does it NOT work, it causes other autoimmune disease and can cause and worsen thyroid disease and cause thyroid cysts.
There are so many great other meds out there, it’s foolish to take this.
Hi..this also happenwd to me..was on levothyroxine 75mg for 7years...i was mis-diagnosed and should not have been on it. I suffered all this time too..finally i was.weaned.off it..feel much better
I thought I was imagining it. I'm to have my thyroid removed in 2 weeks, levothyroxin has always made me sick while trying to take it so I always stop taking it after a few days, only to take it rarely. When my knock gortoir started swelling huge, I went back to my doctor for my hypothyroidism. He then told me it would have to be removed along with a nodule taking up most of my thyroid. He put me on 175 mcg . I've taken it correctly and have experienced horrific disabling pain in my legs. I stopped taking it for a few days and the pain almost went away completely. Took it again this morning and my legs are SCREAMING in agony. Thankyou for this article. I thought it was only me, I'm calling my doctor in the morning. Good luck to all of you
I have sub clinical hypothyroidism and was put on 75 mcg of Levothyroxine, my heart was racing and I could not sleep. I asked my doc to change to 25 mcg he did not want and prescribed 50 mcg. Since I started taking it, my right shoulder and arm was hurting so badly that I could not lift it above my chin, I was losing strength on my arm. I stopped taking levothyroxine and the pain is gone, like nothing happened to my arm.
I am not taking anything right now. I will look for an endocrinologist before I take anything.
good stop taking it if its causing u problems. i weaned off of it after 7 years at 75mg...joint pain disappeared ..iv got my life back
Tania and aabbb, I eventually gave up on the thyroid meds, as they seem to do more harm than good. I got the best relief from essential amino acids complex, and additional phenylalanine.
In addition to all the other horrible side effects remaining from the Levo, it seems I have chronic pancreatitis. My guess is the pancreatitis causes malabsorption and nutritional deficiencies which worsen the thyroid disease.
Just throwin’ it out since I figure other people may have similar combinations of problems.