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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  • Posted

    I too have been there, it can take time to settle down. I lost 51/2 stone steadily over a 14 month period by switching diets to avoid boredom and allowing myself. A day off each week without over eating. I went to the gym three days a week doing pretty gentle stuff, nothing to injure joints and tendons. When I leveled out  they  suggested I increase fats of the good types   Ie. coconut oil, olive oil and advocado. This I did adding three a day and weight started dropping again! I added MSN to my diet for joints. And now I feel better than I have for years  despite just turning 60. I have also noted my thyroid readings over a few years and although always within the range , I always feel so much better when tsh is close to one.......doccccctor  not  happy to up dose at first but she sees how much better I feel
  • Posted

    I am exactly the same I have been taking the medication 125mg for 5yrs now and I'm being told my symptoms are nothing to do with the medication!! I have decided to come off it all together as I cannot feel any worse than what I do. I was perfectly healthy in body and mind before taking this medication but I was told I had to take it by the doctor. 4weeks in I feel more tired but less pain and less anxious. I keep getting told there is no other option which I know is not correct it just costs the nhs more money...

    • Posted

      You won't get NDT on NHS - I've tried. Even though I've become intolerant to maize starch which is in all the synthetic thyroxines my Clinical Commissioning Group (CCG) won't fund NDT. If you really need thyroid meds you need to take them otherwise you can cause irreversible damage to your body and even death. I ended up buying my own off the internet as many others on this site do. Search through the discussions and you will find ones on NDT that discuss alternatives to synthetic meds.

    • Posted

      Long story short, I was on 300 Mcg synth. brand not generic for 1.5 yrs and felt short of breath, foggy head and moody as heck, but I blamed it on just having gone threw my thyroid cancer that metastasized threw lymphatic system and have gone threw a major surgery then just having my enlarged thymus out in june.... well, they cut me back to 150 after surgery bc they wanted me to have my period, and then I got a utility in hosoital... added cipro and my regular 300 synthetic. Dose a day omg the anxiety and symptoms got worse so bad my paper said to stop and give myself a 2 week break. I started feeling better but still had shortness of breath and anxiety on and off, we'll I was on vanco. For cdiff that came after using cipro for theuti I got after surgery .... well........ I just stopped the vanco and have no thyroid rx in me either and all my anxiety is gone , feels amazing.. ahhhhh I can breath... I am a bit forgetful and foggy but that's bc I have no thyroid med in me at all... saw a new endocrinologist 4 days ago and she suggested going on a all natural thyroid med that ppl say help with loosing weight and has lessssssss fillers that helps with less side effects. Finally, a rx for wp

      Thyroid medicine. It's what I have read has only two fillers and is not a synthetic.. reviews say ppl do much better on this vs the synthetic forms.

      I will definitely update ando let u all know what I think, as I start a tiny dose tomm and will work slowly at increasing to what my blood work AND symptoms show works for me. Finally finally finally have a Dr listening to my body and my words when I say I need help bc I have to be on thyroid medal the rest of my life as cancer took my whole thyroid away from me.... why stay on something that's synthetic if I'm having issues... seems most Dr's want there patient on a synthetic rx and are not educated, I spoke up and finally after twice she offered a natural thyroid rx. I pray being off antibiotics and OFF the synthetic synthroid rx I will feel better and will have no anxiety or breathing issues.... I pray alllllll of us can have a Dr who will listen and will help us by giving us the rx that works best for our particular needs not just what they think we need as we r not all cookie cuttersheet exactly alike one another.

      Pray for all of u! Will update after being on the wp thyroid natural thyroid med for a few days.

      Blessings to u all!!!

    • Posted

      Thankyou for your reply i have found this forum much more helpful than any of my doctors appointments they dont seem to know enough about this condition and say there are no other options. I have bloods this week and follow up endo app next i will address this with them and mention sourcing ndt medication myself outside of the nhs.
    • Posted

      How are uou getting on with ndt? Are you any better?
    • Posted

      You're welcome. Keep us posted how you get on. If you have any more questions, just ask and I'll do my best to answer them.

  • Posted

    Dear Iseethesun, I tried sending a PM to you, but it seems that feature doesn't work. Are you still here? Please PM me.

  • Posted

    I'm 43 yrs old diagnosed with Hashimotos low thyroid. I take Levothyroxine 125mg.

    I've also seen my kidney function decrease substantially over the last few years. 2012 it was 79 2014 it was at 53 2015 it went to 68 and now recently 60.

    Can you go off Levothyroxine and just watch diet? Has anyone done this and seen an increase in kidney function?

    • Posted

      Unfortunately hypothyroidism is different to diabetes and can't be controlled by diet. The only exception to this is if one has hypothyroidism due to a lack of iodine in the soil (not usually a problem in Western Europe), and even then the hypothyroidism needs to be detected early before the thyroid is permanently damaged. So I personally wouldn't recommend stopping thyroxine. The way to do it if you are serious about trying, is to change your duet first before reducing the thyroxine. Then, if the new diet is working, your blood test results will be above range and your doctor will advise you to reduce your thyroxine dose.

    • Posted

      May i ask if you are on other medications or do you think there is a direct link between the levo amd kidney decline
  • Posted

    Poor u this happened to me so I came off it with. O side effects it has been 9. Months now but unfortunately my t4 has dropped from range and TSH up so now under a naturopath
  • Posted

    Hi

    I had a total thyroidectomy and a large mass removed (benign) nearly 6 months ago. I have all the symptoms you describe. Specialist prescribed a small dose in hospital after op. Then it was increased to 50mc..... then 100. I was feeling okay at this point. Had more blood tests and was told to up my dose to 150mc. Apparently I was still hypo but I felt okay... 6 weeks on my hair started to thin out. Weight gain and all the other horrid stuff you mentioned. I was over it all. On top of that my parathyroid glands are not working so more meds to take.

    As I said I was over it all so for two days I didn't take Thyroxine. My high blood pressure decreased a little and aches and pains were less. I dropped my dosage to 100mc and for a few more weeks started to feel like myself again. Of course the doctor had a few words to say about it. But I didn't care. I did more research and decided to up my meds by 25mc. Now taking 125mc... and guess what I started to feel horrible again. I made appt to see my Doctor. Told him I had changed doses...I think my Doctor had given up on me however he listened to what I was saying. And told me to go back to taking the 100mc for 6weeks and... do not make changes to my dose. I promised I wouldn't and I meant it. I will then have blood work done to see where my hormone levels are at. I asked about Armour. Never heard of it. Strange. The US is does take

    • Posted

      Note of cwution. I found it takes 12+ weeks for the blood tests to accurately reflect a new dose.
    • Posted

      Thanks Barbara for your words of caution. I will take that on board. I'm having a few problems replying to you. My 3rd attempt!

    • Posted

      I admire your perseverance! Before you click SEND it's always worth SELECTING ALL then COPYing it. That easy you can just paste it back in if it gets 'lost'. I type replies in a rext message, then copy and paste it into the Patient reply. It is quicker to write in a text message as my phone is old and slow when replying in Patient.

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