1. Community
  2. Diabetes and hormone problems
  3. Levothyroxine Sodium

Unacceptable side effects of Levothyroxine

Posted , 191 users are following.

Guest
Guest

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?

41 likes, 1182 replies

1182 Replies

Prev Next
  • Rosiebranston
    Rosiebranston Guest

    Posted

    Hi, what worries me is as far as I know it is very expensive which if it is I won't be able to afford.   The one I looked at was a Pharmacy in London.
    • MtViewCatherine
      MtViewCatherine Rosiebranston

      Posted

      Hi Rosie, I'd keep looking for something that is effective AND affordable. I'm sure you'll find something.
    • barbara98940
      barbara98940 Rosiebranston

      Posted

      I was on 100mcg thyroxine and am now on 750mg ThyroGold a day and it costs me about £1 a day. Others are cheaper but I needed one without fillers. Other non prescription NDTs are 'thyroid S' and 'thyroid W'. Other people on this forum take them but I have no experience of taking them.
  • Rosiebranston
    Rosiebranston Guest

    Posted

    Yes I intend to, hoping to try the alternative brand this week, see how that goes, last resort I think is the liquid version, or maybe I'll find something else who knows.   I know I need my life back, I am not able to do much at all at the moment.
  • Rosiebranston
    Rosiebranston Guest

    Posted

    Yes I intend to, hoping to try the alternative brand this week, see how that goes, last resort I think is the liquid version, or maybe I'll find something else who knows.   I know I need my life back, I am not able to do much at all at the moment.
  • gail58234
    gail58234 Guest

    Posted

    Have been told many times and after many blood levels that symptoms were due to overuse of Klonipin and alcohol  Went off Klonipin and pain killers three years ago--my choice--back on Klonipin for a month because on a visit approx a month and a half ago my GP realized the most obvious effects of anxiety but wouldn't  renew until I went to my GP's again to be seen by her or another dr in the practice.  I have been for visits and blood work done many times  and was told thyroid function normal and debilitating pain and shortness of breath due to arthritis. I have always told the truth, never "Doctor shopped" for anxiety or pain and have since become essentially bed ridden. 
    • Live2LoveLife
      Live2LoveLife gail58234

      Posted

      (If you're still alive) Get your cortisol level (and your liver function) checked! If you do have low cortisol, ask for hydrocortisone tablets! Also, eat an organic, plant-based diet with mostly citrus fruits blended with water and greens. 
  • Live2LoveLife
    Live2LoveLife Guest

    Posted

    You should go to an endocrinologist, if you haven't gone already. It is possible that your problems may actually be caused by your pituitary. (And perhaps a vitamin D deficiency.) General practitioners and pediatricians are often not equipped to accurately determine the causes of most symptoms that are not visibly observed. Diet is extremely important in maintenance and improvement of health. A raw, grain-free, ovo vegetarian diet is best for most people. (Raw does not mean uncooked; it means cooked lightly, unturned.) Also, do you take levothyroxine sodium?
  • jeancrystal
    jeancrystal Guest

    Posted

    I did, I almost died. I've had Hashimoto's for over 20 years. Because of the dose caused tachycardia I went on an extremely low dose, 13 mcg. I had been skipping the higher doses just to get through the day. On 13 mcg my TSH went to 95. Tachycardia was better any a lot of bad side effects went away. Unfortunately I got myxedema (extreme result of low thyroid hormone) and was in Hospital, in ICU 2 days. My trachea was almost swollen shut and other life threatening issues. 

    Now I am at a dose of 75mcg and I am living with extreme leg and knee pain and other side effects that are unpleasant but have no choice. They have tried to increase the dose but I can't tolerate it. I tried Arnour but it made the tachycardia worse.

    i don't believe I will ever find a doctor who will believe that the side effects are so bad, they don't even believe the manufacturers literature that the side effects exist. 

    My advice is listen to your body, the TSH number is all the doctors care about. My TSH was dangerously high but now I am okay at a TSH of 10, I refuse to take a higher dose to appease their members. If the amount of T4 and T3 are close to normal I say don't take a higher dose just to satisfy that TSH number. Good luck.

    • MtViewCatherine
      MtViewCatherine jeancrystal

      Posted

      Hi Jean, just curious, have you tested your T3 and T4 levels? Are they normal? High? Low? I'm wondering because i have the opposite problem, where I have severe low thyroid symptoms with only mildly elevated TSH. In the end, it's probably due to high levels of reverse T3, in my case.

  • beverley2260
    beverley2260 Guest

    Posted

    Hi I've been taking levothyroxine for 6 weeks and I've done nothing but ripe my skin to peace through itchy. I also am a diabetic type two and blood sugar have been high but I thought it was because I have cellulitis. But reading the list from tablets I take metformin. Could you give me some advice please.

    • barbara98940
      barbara98940 beverley2260

      Posted

      Hi, I too itched when on thyroxine. I found I was allergic to some of the fillers. Acacia was the worst filler for me and corn (aka maize starch). Maize starch is in all the thyroxine tablets and in the liquid thyroxine (glycerol is derived from corn). Ask your GP if you can try a different brand. I found Wockhardt was the brand I reacted to the least. Alternatively switch to Natural Desiccated Thyroid. WP Throid (aka Westhroid-P) doesn't have fillers in. I'm in UK and my GP is unable to prescribe NDT so I buy my own, called ThyroGold, off the internet.

    • Rosiebranston
      Rosiebranston beverley2260

      Posted

      Hi, I was on levothyroxin, I didn't get extreme itchyness but did have quite a lot, since going onto NDT that has cleared up completely.   Problem is you have to buy it yourself, get a Private GP to prescribe it and they are not easy to find.   Thyro Gold is good I hear but when I worked out the cost it was a lot dearer than NDT.   You can contact Thyroid UK for information regarding where to get NDT, they also have a list of GP's who will prescribe it, but these tend to be in the South so it depends on where you live.   I do wish the NHS and NICE would license NDT, which was the orininal medication from 1892 to 1970 when the drug companies came along with a synthetiuc version. There are a lot of people like us who can't take Levothyroxin.   I had so many side effects with it including feeling extremely ill, horrendous insomnia, agitation, hot sweats, nausea and vomiting which became so bad I had no choice but to come off it.   Good luck with whatever you choose to do.

    • MtViewCatherine
      MtViewCatherine beverley2260

      Posted

      Hi Beverly, just a heads up for you. I noticed you have the hypothyroidism and are also on metformin. Hypothyroidism slows the metabolism, resulting in a sluggish liver. Metformin also works through the liver, can cause some problems in the liver.  I'd think some of your difficulties may be related to low liver function. You might get some relief from liver cleansing if you can find something effective that your system can tolerate.

      Good luck!

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.