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Unacceptable side effects of Levothyroxine

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I was described Levothryoxine 2 years ago and my GP has increased it until I am now taking 125mcg.I have never had so many various symptoms in my life - severe weight gain including puffy face and eyes, very itchy dry skin, brittle nails, thinning hair but the major items are the pains in my joints and muscles - especially in my knees and my hands. The doctor said I have carpal tunnel syndrome and also now have high cholesterol,,,,,,, When reading other peoples' experiences it would appear that many people have all of these symptoms so why is it that GP's do not take this illness more seriously. I recently asked if I could have a full blood showing all readings and also if I could be prescribed Armour and was told no. It also scared me to find that several pharmacists in major chemists haad never even heard of Armour. Has anyone felt like they have had enough and just stopped taking Levothyroxine and what was the result?

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  • d74
    d74 Guest

    Posted

    I don't recommend it but I stopped taking it over eight months ago and recently had my blood work done and my level showed normal I was never originally tested for my thyroid levels but have then taking the drug for over three years. I am going to consult an attorney on this matter I think the drug is a big scam and does nothing. I am a 40-year-old white male who is pretty p*ssed off about having to take this drug for so long and pay for it when I didn't need it and now concerned about the side effects for taking a drug that was unnecessary for so long
    • LAHs
      LAHs d74

      Posted

      That's how I feel about my 2 1/2 years on a Levo. generic. I couldn't afford an attorney but I did write to the FDA to report what I consider to be a bad drug. The only problem is that if you throw in an incompetent doctor into the equation, you may not get anywhere. Most doctors cannot juggle more than 2 variables (TSH and T4) and they follow the ATA (American Thyroid Association) guidelines slavishly, ignoring the fact that not all of us (I'm beginning to think "most" of us) do not fit that mold. Either that or the drug they are manufacturing these days is defective while ATA's tests were done using "good" synthetic drugs - therefore their guidelines will not perform as advertised with today's drug. 

      Oh, and the more people who send thier info to the FDA, the sooner they will either correct the problem or pull the drug off the market.

  • MtViewCatherine
    MtViewCatherine Guest

    Posted

    Yup- Given the total innefectiveness and side effects, it becomes apparent that this dug was never properly tested.  I know that Synthroid was grandfathered in and was not formally approved until the FDA requested Abbot apply for drug approval in 2001. It was approved in 2002, which means there were never studies done on this drug, since it takes many years to run clinical trials. The levothyroxin is considered a generic of Synthroid. Generics only have to prove that they are as good as the name brand, and never go through full clinicals. So my guess is that there's an entire line of drugs that have never properly been tested. Furthermore, when companies design a synthetic hormone, they are not allowed to use the natural name. Levothyroxin is the name of the T4 hormone produced naturally in the body. A synthetic version of this, that we have all been taking, is not the same as the natural.

    Has anyone else run into any research on this subject of drug approval? My guess is companies do everything they can to keep it quiet.

    I could never in good concience, recommend anyone ever use this drug. I would try the natural first, no matter what!

  • Tarbuckle1970
    Tarbuckle1970 Guest

    Posted

    I was just prescribed this med, and started this morning on 50mcg. My ? is how long did it take to notice adverse side affects?
  • MtViewCatherine
    MtViewCatherine Guest

    Posted

    Hello- to answer your question as to how long it take for the side effects, is a comp licated question. I had serious migraines within a few days, so bad, I feared I would have a stroke. But I had been on 150mcg of NDT and the insane doctor put me on 25 of the Levo. So my porblem was combined of having had the meds dropped and the fact that the  levo didn't work right. Here's how the dosing works... It takes about three months for the mneds to level out in the blood work. If you test before that, you will get a false high, and if your doc is not experienced, he'she will tell you to lower the dose, when you likely should raise. Most people find they can use physical indicators- body temp, whether you have cold fingers and toes, tiredness levels, etc- to help judge whether you need to increase the meds. If  you use only the blood work, and typically dictors like to raise by 12.5mcg each time, it will take you years to get the dose up and by thenm your life has gone down the drain.

    What most people find, is that when they finally start to feel like themselves again, and the dose feels right, the docs say its too high, and have them drop the dose, resulting in a never ending cycle of exhaustion.

    It took me two years to get the dose up to where it was not improving by raising the dose. At that point, it bacame obvious that the meds were not working and I switched back to the NDT. It was two years of migraines, exhaustion and degrading health.

    Switching back tot he NDT was also horrible and I was completely incapacitated for 4 days. Its been a year now since I went off the levo and back onto the NDT, and I feel like the damn Levo is finally out of my system.

    I wouldn't recommend this medication for anyone, as teh only people I've met who seem to tolerate it are on only 25mcg and had no visible symtoms of thyroid disease before being diagnosed by high TSH. I suspect, the higher the dose, the worse the effects, as seemed to be the case with me, as I increased the dose, some symptoms improved, while others got worse.So my health never really improved while on it.

    • Tarbuckle1970
      Tarbuckle1970 MtViewCatherine

      Posted

      Thank you for sharing. I went to the Dr for some other issues, and he did a bunch of blood work, called me yesterday, told me I have hypothyroid, prescribed these meds. I guess I'll wait a while before I panic about side affects.
    • LAHs
      LAHs Tarbuckle1970

      Posted

      HI Tarbuckle,

      If I were you I would get hold of those results, make sure the doc has done T4, T3, TSH and if s/he hasn't I would not let anyone make any decisions for me with such little information. Read about hypothyroidism as much as you can, don't go into any medications blindly. Ask him/her some questions about the results after you have read up on it. You will not have the energy to "panic" if the doc puts you on a lousy medication at the wrong dose - and then you will have to study the whole thing. Do the studying first.

    • Tarbuckle1970
      Tarbuckle1970 LAHs

      Posted

      Thanks for the advice. I've had many of the symptoms I've read about under hypothyroidism, I just figured I was getting older, I work hard at my job, and I could definitely be in better physical condition for 45. Yes, I will be reading as much as possible about the condition before I meet with the dr on tuesday. Thanks again
    • king93
      king93 Tarbuckle1970

      Posted

      According to some websites Hypothyroidism is responsible for almost every ailment there is, from cracked heels to ingrown toenails. Don't believe everything you read. I complained of putting on weight and not being able to lose it (my own fault really) feeling tired and constipation. My doctor put me on 25mcg of Levothyroxine because my blood test results were borderline, and after 3 days the side effects were horrendous. I could hardly stay awake, itched all over, especially my scalp and had hot sweats. It was like taking poison. After 3 weeks I went back to the doctor, she took me off it and said to have a blood test in 6 weeks, which was then normal. It took me 4/5 weeks to recover from the side effects after only 3 weeks on the awful synthetic hormone. If I need it again I'd go for the the natural thyroid replacement, even if I had to pay for it. I don't know where you live, but Thyroid UK have a list of pharmacies that supply natural thyroid on NHS or private prescriptions.
    • carmel83758
      carmel83758 king93

      Posted

      Went through a very similar situation to you.  Also found that the side effects varied depending on brand.  It is all very well saying you MUST take the medicine but if you feel depressed, anxious, physically awful and nio energy what is the point? Like you said it is  like offering to take poison for the rest of your life and for all you know you ciould have felt even worse if you continued to take it for a long time.  I now take the natural one sometimes and other times none at all. Doctors do not understand that if the side effects are debiliating and severe it is not worth it.
    • LAHs
      LAHs king93

      Posted

      Hi King, I'm glad you said, "It was like taking poison" that is what I secretly used to think - but thought I was being silly. Every morning on L-T4 I would pick up the pill, look at it, and not want to put it in my mouth because I knew something was very wrong with it - but I have no thyroid and, at that time, I knew no better. I couldn't tell the doctor my reaction because I didn't want her to think she had a nut case patient - so I suffered for 2 years.

      Now I am on Armour - and I look forward to taking that in the morning because I feel great within half an hour.

  • MtViewCatherine
    MtViewCatherine Guest

    Posted

    Foks- I did a searach for class ac tion lawsuit levo... Check it out... Very interesting. Class action lawsuits about this drug have been going for decades.
  • carmel83758
    carmel83758 Guest

    Posted

    You can get a substitute through the main shopping website and they are not expensive, I get 1000 tablets for about 35 quid delivered. If you feel that awful on the fake ones then this is the answer. Some are fin e on them, many say they feel bad on them. Hence these real thyroid tablets are very popular.  We are in the UK, it is the same here.  When I stopped taking levothyroxine I felt fine, much better than when taking them.  It only worried me that I should return to them because I did not want to develop the problems one can get through an underactive thyroid.  I also found that the side effects vary accoding to which fakes you take, on one I could be feeling quite well, on another I could get nausea and aches and feel like I was dying. It gets complicated and time consuming and it is no good asking the doctor if you should do this or that as he can only work out accoding to the information you have and can work out for yourself. Yes some people rush to the doctor and ask if they should take a lower dose because the high dose makes them feel like they are dying, but surely they can work out for themselves then that it is beter to lower the dose without valuing another opinion or wasting a busy doctor;'/s time. I know a lot of peiople who will note take the fake thyroid because they felt so awful.  Very often changing the dose did not help enough to warrant continuing with it.
    • LAHs
      LAHs carmel83758

      Posted

      Here are my two cents worth on different brands of synthetic (the "fake") thyroxine (L-T4).

      I am quite sure there are some brands of L-T4 which will work on some people. Initially I was on a generic L-T4 from Forest Pharma. After my doctor and I fiddled with the dose for 3 YEARS!!! I found a dose which made me feel normal - for two years. Then that pill was discontinued and I had to change to a different "brand", the brand which my hospital uses as their generic. My old doc retired and the new doc didn't have time to fiddle with the dose to get me back to normal. Perhaps if we had fiddled for another 3 years we might have found a dose which worked. And therein lies the problem, there are about a dozen manufactures of synthetic L-T4. We cannot spend 1 doz * 2-3 years trying to get to the optimal dose, that could be the rest of our lives.

      I had this dillema, I struggled for 2 1/2 years feeling ill all of the time, when I thought I was going to die I insisted that I changed to Armour Thyroid (an an NDT) - a proven winner. All is OK now - except, of course, the new doc, true to form, says that my TSH is too low (of course it is, that is what happens when you have not thyroid) and wants to reduce my dose. I said, "No" and that we should not mess with success.

    • MtViewCatherine
      MtViewCatherine LAHs

      Posted

      Thanks for the 2 cents worth... I completely agree. I spent a year trying to get the dose right on the synthetic levo and realized it just doesn't work for me... Another year getting the dose right on the NDT. The huge problem is that a side effect of the therapy/meds for this disese is that the meds often cause the TSH to zero out, when its actually working properly. Since most doctors don't know this, they freak out when they see an unnaturally low TSH, and think the meds are too high, when they really should be looking at the free T4 and T3 as indicators to whether the levels are right. Because of this lack of knowledge on how the meds work, its pretty typical for patients to start feeling better (finally), only to have the doctors lower the dose once its actually wrking. This results in a continual roller coaster.
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