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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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  • beeTx
    beeTx Guest

    Posted

    Hello,

    I had radiation on my thyroid in 1998. I didn't have the internet and knew nothing about it and my questions were either ignored or poo pooed. I tried the thyroid lowering meds to help with the high levels of Graves in 1998 but it continued to gohigher and higher. My doctor said mine was the highest she ever saw. I was sick sick. So the doctor consulted with a endocrinologist from Dallas who she said knew all about this.. She suggested either removal of my thyroid or RAI..... I knew removal was a bad choice even tho I was dumb.. So I opted for RAI. She said it would not totally kill the thyroid off and I don't think it has...... I'm on 175 mcg Levothyroxine for years now and my T3 levels are good..... However in fall and spring it seems like my thyroid levels either go very high or much lower... I will have times my anxiety is thru the roof, insomnia, hair falling, stomach problems, dry skin. Then within a few months it seems to go back to where the 175mcg dose is ok............... Why will my doctor not adjust my levels when I am feeling like that? I even went to a high powered Endo doc who seemed to not want to offend my primary care doctor by changing meds.. I am discouraged and sick of feeling sick and tired.. I know my adrenals are worn out. I have zero energy. ...

    Thanks,

    BeeTx

    • MtViewCatherine
      MtViewCatherine beeTx

      Posted

      Hi beeTx, you might want to read through the questions and comments here, as you'll find your story is not unusual. However, your concern about seasonal changes is one most people don't notice. Bravo for you for your observations. 

      I've found over the years that in colder weather, I typically need a little higher dose. Unfortunately, my levels seem to change constantly so it isn't easy. For those who have a stable dose, it often helps to increase levels a bit as the weather is colder and then lower them back down as the weather warms up. I have a friend who does this quite successfully. She lives in a warm climate, so even mild seasonal changes can really throw things off, as in colder times, the body does seem to need more thyroxin to keep the body warm.

      The other thing that may be useful to know is that thyroid cells, like all cells, have insulin receptors. I've recently been looking into this for myself and suspect unstable blood sugar levels (i.e. Sporadic insulin levels, and insulin resistance) may be a culprit for the wonky and sporadic thyroid bouts, as over the years, I've noticed my thyroid function is NOT necessarily correlated with TSH levels. I've recently started taking some herbs that seem to help. Berberine helps a lot, but can cause a detox reaction, so I go on and off as I'm able to. Bergemont isn't another that is supposed to help blood sugar levels, but I haven't tried it yet. You might want to know that my blood work for glucose and A1c are within normal ranges, and the Berberine seems to make a difference. So normal blood sugar levels don't necessarily mean the insulin is ok with respect to your thyroid.

      Another thing to note is that there is such a thing as thyroxin resistance, where your body is uunable to recognize or use thyroxin properly. This also requires a higher dose.

      Lastly, if your reverse T3 (rT3) levels are too high, your T3 will be out (low and won't show as low in blood work) of wack, so you have to take a higher dose if your rT3 is high. 

      In in the end, I would say, don't be afraid to listen to your body when it's telling you your levels are too low, because pretty much any blood work does not give a complete picture. If you're having problems, the only way to have any hope of getting the dose right is to learn to listen to your body and self-regulate, take a little extra some days, increase and decrease seasonally, etc. This is difficult because of the lag time for the meds, and because changes in dose can also throw us completely off.  So you have to be cautious.

      Hope that helps.

      Catherine

    • barbara98940
      barbara98940 MtViewCatherine

      Posted

      Catherine, you're right - I too needed to increase my thyroxine during the winter. For the last 15 years I've needed an extra 25mcg October to March. I mentioned to my GP that I always seemed to get underactive symptoms during winter, so we did a trial of some extra thyroxine. When I was heavier it was an extra 50mcg so that I was on 200mcg over winter (I weighed 12 stone 8 pounds / 78.8kg).
    • beeTx
      beeTx MtViewCatherine

      Posted

      Thanks for the information. I'll try adding some in winter and cutting back in summer. Makes lots of sense thanks again.

      BeeTx

    • barbara98940
      barbara98940 beeTx

      Posted

      You can monitor your thyroid levels by taking your basal pulse. For me <60 =="" underactive,=""> 70 = overactive. Increase or decrease by a quarter of a 25mcg tablets every 2-3 days to avoid the swings in effects. I found if I ncreased the dose my body initially gave hyper symptoms even if it was the right dose, and vice versa..
  • beeTx
    beeTx Guest

    Posted

    Thanks Catherine,

      I have T2 diabetes also so what you say makes a lot of sense.. My trip to see the high powered endo doc did find one thing that confuses me. He said my insulin is very high and yet they have me on 145 iu Lantus a.m and again pm plus Novolog before meals and Metfomin. I have tried  Bereberine and also bitter melon, ceylon cinnamon. (No help there) 

     I did quit my thyroid medicine and ended up in ICU very ill so no won't go there again!! 

  • Rosiebranston
    Rosiebranston Guest

    Posted

    I have been on two different brands of Levothyroxin, Mercury and Activas and have different symptoms from each brand and my Thyroid reacted by going into over activity, so I was off Levo completely for five weeks, now I can't take either brand without feeling extremely ill.   The chemist has found a brand called Watchyard for me to try but if this doesn't work I will have to try oral form.   I feel that I am reacting to whatever they use to reduce Thyroxin to tablet form as have had the same problem with Morphine which I can't take in tablet form.   I am waiting to get the new brand to try.   I have looked into Armour but it isn't licensed in the UK although some GP's will prescribe it on the NHS, but not many I think.   You can buy it on a private prescription but it is very expensive and beyond my pocket unfortunately.   I wish the NHS would license it as it doesn't appear to have the side effects that ours does as it is natural while our Thyroxin is synthetic.
    • gill43753
      gill43753 Rosiebranston

      Posted

      Hi Rosie,I was on Levothyroxine for 4 years,feeling worse on them than on nothing at all. My GP referred me to a new Endocrinologist,who initially put me on a trial of Liothyronine (T3),and as I feel much better on that,I'm taking just the T3. I made it very clear to him that I hated Levothyroxine. I do have to see a specialist Endo anyway for other problems,but it might be worth you asking if you can be referred to one.I wasn't allowed to try Natural Desiccated either,though I did ask. Gill
    • barbara98940
      barbara98940 Rosiebranston

      Posted

      I too have problem with all the thyroxine tablets. I found I had become intolerant to maize starch (US name is maize, UK name is corn). I tried the liquid thyroxine but it made me swell up. I am in the UK. I ended up having to order ThyroGold without prescription off the internet (with the support of my NHS GP). Just thought I'd mention that there is an option if you need it necause you react to all the other meds.
    • barbara98940
      barbara98940 Rosiebranston

      Posted

      I too have problem with all the thyroxine tablets. I found I had become intolerant to maize starch (US name is maize, UK name is corn). I tried the liquid thyroxine but it made me swell up. I am in the UK. I ended up having to order ThyroGold without prescription off the internet (with the support of my NHS GP). Just thought I'd mention that there is an option if you need it necause you react to all the other meds.
    • Rosiebranston
      Rosiebranston gill43753

      Posted

      Yes if this new one doesn't work I will have to insist on an urgent referral,   I don't want to left waiting for weeks or months to get to see someone as I am now desperate for a solution.
    • Rosiebranston
      Rosiebranston barbara98940

      Posted

      I am intollerant to the chemicals or whatever they use to reduce it to tablet form, I do think that is the problem here.  It depends on what the alternative brand uses to reduce it as to whether I get side effects or not.  I don't know if the oral will work, it does with Morphine but who knows.
    • MtViewCatherine
      MtViewCatherine Rosiebranston

      Posted

      Hi Rosie, I had the overactive thyroid with the levo also. The thyroid cyst was actually growing while I was taking the levo, which never worked for me.

      I finally went to a non prescription natural organic bovine (American Biologics), and have had better results. I've only been on it a few months, so I still need to see how the blood work shows up.

    • jjf255
      jjf255 MtViewCatherine

      Posted

      Hi MtViewCatherine, I started on the American Biologics thyroid glandular (bovine) several weeks ago...Have to say today I felt a little better. How long did it take for you to feel like it was working and how much did you find your full dose to be? Do you split your dose?

      Thank you for any advise.

    • MtViewCatherine
      MtViewCatherine jjf255

      Posted

      Hi Jjf - I felt immediately better on the natural bovine... I started way too low, at three capsules a day, from 200 mcg of the NDT. I detoxed from the NDT for several months, which indicates the NDT I was on was partially synthetic. When I say detoxed, I mean when I went off the prescription NDT, my body released icky chemical smells for several months. Really gross.  

      Its been 4 months and I'm on 9 a day of the 130mg capsules. This seems to be working. I split it into three capsules, three times a day.

      A friend of mine takes a similar product and takes three capsules a day instead of her previous 60 mcg of NDT. I don't know if she splits the dose.

      Getting this this medication also flushed out some other ongoing health issues, and I've been dealing with these as well.

      Once you get the thyroid under control and working right, it's a lot easier to see the other areas of the body that need help.

       

    • jjf255
      jjf255 MtViewCatherine

      Posted

      Thanks for the reply. I am now taking 2 capsules around 5 AM when I first get up and 2 about 6 hrs later. I'm just starting to feel a little better but I think in a week or two I may need to increase...I'll see how it goes.

      I was starting to research other products like Thyroid S since it is porcine...was thinking maybe that was better then bovine. I'm glad to hear you are satisfied with bovine.

    • MtViewCatherine
      MtViewCatherine jjf255

      Posted

      Hi Jjf, pigs are closer genetically to humans, which is why pig heart valves, etc are preferred. However, porcine thyroxin has much higher T3 than humans, so that can throw things off: too high T3 can cause panic attacks. But if you lower it to get the T3 down a little, the T4 can be too low and you get brain fog. So for me, the porcine was never in range. The levo is T4 only, so I had the opposite problem.

      i haven't yest tested blood panel with the bovine bc I had it way too low for the first two months. I'll wait til I'm on the dose that feels right for a full three months.

    • jjf255
      jjf255 MtViewCatherine

      Posted

      I have been on levo which never really worked for me but dr. wouldnt prescribe ndt so I struck out on my own. Went off the levo for awhile to clear it all out and started on the bovine a few weeks ago. My temp has risen...was very low in AM and much of my joint pain is lessening , but I still don't have the energy I think would be normal. I also just restarted the gluten free, lower carb diet that I have followed on and off for 30 yrs. so maybe all of this just has to settle in. We do have a local lab where I can run my blood work without prescription, so I will do that in the near future to see where everything is. Just wonder if I may need higher T3. We'll see...I was a very poor converter on the levo.
    • Live2LoveLife
      Live2LoveLife Rosiebranston

      Posted

      Have you tried Mylan's levothyroxine sodium? Their 50 mcg tablet has no dye in it. Also, have you tried taking your medications with a mixture of cold water and coffee?
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