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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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  • jay51539
    jay51539

    Posted

    I have a doctors appointment on the 9th of jan so im gonna try to go back to see the specialist, i to have back problems ( upper back) when i went to the doctor she told me it was my posture and sent me for physio but this never helped now im begining to wonder if its all down to Levothyroxine, I forgot to take it the night before last & it was the first time ive been out of pain for a long time, i keep saying to my wife that i just wanna feel normal for a few days with no pain but im not convinced that anyone can fully understand how rough you actactuarly feel unless you have been or going through it, i remember when i was getting the side affects i said to my wife that if they didnt go then i would stop taking them cause i drive a big machine & was putting people in danger, that was when i saw about doing them at night. Anyhow I will demand to see my specialist cause i want off the synthetic meds and be put onto natural I.E armorthoid, i have read amazing results with that so we will see what my specialist thinks.

    Will keep you all posted

  • yasamine14000
    yasamine14000

    Posted

    i have been on levothyroxine for two years at the start i was ok but now im developing ectopic and irregular heart beats also palpertation, at times i feel as though some has punched me and my heart sinks also joint pain even having a profession as a nurse i feel so much anxiety going to my gp and trying to explain these symptoms
    • claire66933
      claire66933 yasamine14000

      Posted

      I agree Yasamine - I feel like a massive Hypercondriac when I go to the Doc's.

      I imagine they think I'm just some stressed out woman who needs to get her act together. Cos it couldn't possibly be the drugs - could it?

      I'm hoping to feel much better soon due to lots more excercise and healthier eating.

      But right now I'm feeling pretty tense and v thirsty in the night.

      I think the benefits of the Levo must outweigh the side effects. Side effects seemto be so many and varied - no-one knows what to expect - result more stress and worry.

      Hope you feel better soon

      Claire

    • claire66933
      claire66933

      Posted

      Hi Yasamine and everyone else on this site.

      Just an update on whats' s happening with me.

      I went back to the Doc's after not taking the Levo for 10 days - and feeling much more relaxed and generally better. She said don't take them (I was borderline hypo) and come back to get yrsyed again in July.

      What a relief - she also said that there is another drug but that Doc's aren't allowed to prescribe it.

      I'm glad I kept going back and complaining - have had 3 horrible months.

      I'm not advising anyone to stop taking meds

      just saying what happened with me. Just keep questioning. Hope you all feel better v soon.

      Claire

  • arwyn
    arwyn

    Posted

    I have not taken Thyroxine now for 4 weeks and pain free at last,I am a retired nurse and been constantly

    browsing the web for answers,I was diagnosed with Fibro 2 years ago and has been a nightmare.

    But it looks like it is all but gone and pain level is down from 10 to about 2.

    I was on 50mg and every time I took them I felt tired and lethargic ,I must say I feel better since I stopped

    them.

  • Guest
    Guest

    Posted

    I first started taking Levo 9 months ago, at the time I was boarder line but I was still prescribe it. I started on 50mg then 75mg. My hair was coming out, my nails were brittle, and my skin dry. Also I might add, I have been on HRT for 2 years and never had any problems with it until the last 4 months when my blood pressure has gone sky high and I have had to come off the HRT.

    I went back and told the dr that I was still feeling tired and that my hair was coming out...He then put the does up to 100mg and after 3 wks on this does my hair was coming out even more in clumps...I went back and now they've lowered the does back to 75mg (After me saying, that's what I wanted to do) So, I will have to see at my nxt blood test in 8 wks what's happening. I have thought about taking kelp along side this Levo.

    • Tamara123
      Tamara123 Guest

      Posted

      Hi, I'm not sure if you will even see this post, but wanted to know if you saw any improvement over the past 3 years if you're still taking the Levo.  I've been on it for 2 years and have had sooooo much hair loss, itchy and dried out scalp that it brings me to tears just about every day in the shower when I see all the hair going down the drain.  I have complained to my Gyno about this so he runs tests and says thyroid is "spot on".  I asked him about hair loss and he wants to run more tests...  If I remember correctly, he originally said I was borderline and then started me on low dose (100 mcg).  So I'm tempted to just stop the meds because I didn't really see me feeling that bad to begin with.  

    • MtViewCatherine
      MtViewCatherine Tamara123

      Posted

      Hi stuck, I was on levo for several years. My health and thyroid condition only worsened while on it. I'm much better now that I've quit the meds. I've been doing supplements, amino acid therapy and TCM. MUCH better without the levo.

    • barbara98940
      barbara98940 Tamara123

      Posted

      Hi, when your endo says 'spot on', which tests has he run? If it is TSH only, ask for T3 and T4 to be done. Some people can't convert very well the T4 (levothyroxine) to T3 (liothyrinine, the form your body can use). Dry itchy skin andhair loss are both symptoms of hypothyroidism - the important thing is that you can have these symptoms even if your TSH is 'spot on' if you're not converting T4 to T3 properly. Look to see where T4 and T3 results are in their respective ranges. If one is in the middle, the other should be.

    • Tamara123
      Tamara123 barbara98940

      Posted

      It was my gynecologist that had been running the tests. I have a followup with him next month, so I will have to get the specifics of whee he ordered on my thyroid. 3 days after that appt, I am scheduled to see a dermatologist as well.
    • barbara98940
      barbara98940 Tamara123

      Posted

      Also, 100mcg isn't a low dose for most people. 25mcg is. Levothyroxine is dosed at 1.7mcg per kg of bodyweight. 100mcg is often the full dose for someone.

  • wendy51335
    wendy51335

    Posted

    I have been on levothyroxine since 1987 when I was dx with hypothyroidism. My labs have been very stable over the years with very few changes in the doses. I have not had any of the side effects except my hands and feet were always cold. In October,2013 I had a TSH drawn from my family dr and the result was 1.65. In November,2013 I had pre op labs drawn and at that time my THS was 7.77. My family dr never contacted me regarding this alarming increase. She contacted me the week I was discharged from the hospital--I had bilateral knee replacements on Dec. 4. I was originally taking 125mcg and the dr now has me on 200mcg and I am just miserable with all the side effects I am expericing. I have lost 27 lbs since my surgery, my heart races and I cannot get any help from my dr. I will now be seeking a second opinion from a specialist because I feel like if I continue trusting my dr, she will create more health problems. I am having a hard time trying to concentrate and my recovery with my knees are not going well. My heart races, I am sweating all the time, I cannot sleep and I can cry at the drop of a hat. I hope I am able to get this corrected because I am almost afraid of what might happen next.
    • claire66933
      claire66933 wendy51335

      Posted

      Hi Wendy

      Sounds like your having a dreadful time.

      I hope you find out more from the Specialist.

      I will be interestex to know what she/ he has to say. I've thought about asking to see an Endocrinologist too. It all takes so long to sort out. I don't think Doc's realise what a harmful effect all the worry has. Also I have the feeling that they think I'm imagining all the symptoms - which makes me doubt myself.

      Hope you feel better soon

      Claire

    • gill43753
      gill43753 wendy51335

      Posted

      Hi Wendy,so sorry you're having such a bad time.Sounds like you need to see a different GP.I know it's hard to do if you feel you know your present GP,but you can't carry on feeling this bad.I'm already under an endo specialist for my pituitary,but they are not helping with the thyroid problems,so my GP has referred me to a new one in Oxford,as I am so complicated to deal with.Wish you well,and keep your chin up.
    • barbara98940
      barbara98940 wendy51335

      Posted

      Sounds like the dose is too high. Me, I would have uncreased to 150mcg
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