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 tried this the result...was what they call a tyroid. Strom and it can be life-threatening
    • Posted

      What did you try that resulted in a thyroid storm? Did you stop taking your levo?
  • Posted

    I was prescribed a small amount of this substance 1.75 years ago but stopped taking it after 4 weeks.  I was, according to my doctor, borderline hence a really small dose (60mcg) but boy did it make me feel bad - chest pains, pins and needles in my left arm and a sort of depression.  Well here I am coming up to 2 years without touching the stuff and will turn 67 very shortly.  The best thing I ever did was to ditch this awful drug.
  • Posted

    i was diagnosed to have papillary cancer and had my thyroid removed. my GP prescribed Levothyroxine. at first i was given 175 mg a day but i was struggling to keep my body working. i gained weight, became lethargic, depressed, my joints and hands are all sore and swollen. like all GPs, they just tell me that i have gouts, suffered from CTS syndrome., most of all, i suffered chronic diarrhea. i could not even open a can of food, nor do any walking. am i just making it up? my GPs just dont give a damn about these!!!
  • Posted

    I'm in hope that I can find me a good endocrinologist. I've been on levothyroxin for about 30 years now and I've always suffered symptoms/side effects of my thyroid and the thyroid pills. I am ready to find something different I hope. Here recently I was diagnosed with low potassium levels after being on a water pill for about a year and the doctor put me on potassium 20meq and soon after my heart rate and blood pressure started dropping.  I finally decided to go off of the potassium and sure enough my blood pressure evened out. I have been having really bad hot flashes for the past year and that seemed to get better too after getting off of the water pill. My doctor never told me that thyroid could cause your feet, legs and hands to swell. They just put me on hydrochlorathyzide water pill. Also, I never realized that the levothyroxin could have a severe headache as a side effect. I go in for my routine blood test every six months and if my levels are low they increase my mcgs. I started off when I was 13 on 50mcg. Now, I take 200mcg at age 43. Anyway, if over the past decades medicine has suppose to change so much in the way they do things I wonder why I haven't seen it for myself?

     

  • Posted

    Going on or off the levo was hell for me either way. Easier going off than on. But I replaced it with a NDT, similar to armour. Didn't like that either. Tried a non prescription bovine for a year. That was much better until the manufacturing formulation seemed to have changed. Replaced that with essential amino acid supplements, and extra phenylalanine. Went nearly cold turkey but it's only been a week. Feeling way better, so far. Will keep you posted.

    • Posted

      Hi MtViewCatherine, just to clarify - I believe the non- prescription bovine you were on was called Thyroid Glandular wasn't it?

      I am on a non-prescription bovine NDT called ThyroGold which I've been on for the last 16 months since June 2015 and it's been great.

      Barbara x

    • Posted

      Yes, been on Levo for about 20 years regulated off & on thru the years.  I have weight gain, hot flashes, sweats & cold chills,  nervousness, vision issues some days more that others. it seems stress triggers it.  My Internal Medicine physician has been good. But there  has got to be a better way...

    • Posted

      Thanks Susan,

      I've started all over and am trying other ways to heal.  The non orescrption glandulars work much better than the prescription stuff. But not as strong, so dosing was spread out through the day. 

      I'm using amino acids to get off the glandular. Seems to be working so far. They're inexpensive and have no side effects that I could find. Feeling great so far and hoping I don't crash in a few weeks. 

       

  • Posted

    Many years ago I was fed up taking thyroxine and tried to wean myself by talking half a tab for a few weeks.  Then I quartered it etc...  During the process, people noticed how depressed I had gotten and urged me to get help.  Why I was scheduled  to see a mental health panel at a hospital to determine my state of mind!  Before that happened, my sister figured out what I was doing and told me to go back on thyroid meds!

    my question is what is armour?   I realize you posted a year ago but hopefully you'll answer.  Tx

    • Posted

      Hi Clarinette, Armour is one of several prescription Natural Dessicated Thyroid (NDT) medications. It is made from dessicated ground pig thyroid gland, and has been manufactured/processed to contain only T3 and T4. T3 and T4 are the predominant forms of active thyroxin. T4 lasts about two weeks in the body, T3 is much more potent but only lasts 4 hours. Generally, T4 is made by the thyroid and is used throughout the body, and is converted by liver and gut cells to make more T3. This is not exact, as your thyroid does make some T3, and other cells in the body convert small amounts of T4 to T3, etc.

      The problem with this medication and most prescription meds is that they are either slightly different than human thyroxin or in different ratios. Pig thyroid contains much higher amounts of T3 than humans. Because T3 is a short acting, powerful form, it can result in anxiety attacks if too high or too low, but us necessary to stabilize the body as needed. The T4 if too low, results in brain fog. 

      Most at meds available are either porcine (pig) NDT (too high T3, but good for people who don't convert well due to stomach or liver weakness), or T4 only synthetic known as levothyroxin. Either med can cause anxiety because of either too high or too low ratios of T3 to T4, as well as other side effects. There are other meds that people mix and match, but it depends on what country you're in and what your doc is comfortable with.

      To make matters more difficult, the names of these compounds are the same whether from natural sources or chemically manufactured. So it's difficult to know what's what, especially for beginners.

      On top of everything, thyroid patients are trying to sort all this out while dealing with brain fog.

      Hope that helps clarify things. 

    • Posted

      Hi Clarinette, your PM is not on. Please check your settings.

      I tried all the meds for 7 years. The NDT worked ok initially on the lower doses. But the meds overall seem to trigger my immune system worse, especially after the Synthroid and the levo. Seriously I tried nearly everything. I stopped the meds because they seem to worsen my condition more than help. My condition is severe, but I still have my thyroid gland.

      I'm trying a different approach now and am at least feeling well enough do do some light walking and mild stretching, So I'm hopeful. 

      My my mother has struggled with thyroid disease her whole life, and is very elderly now. So I help manage her meds, because she's had surgery and had her thyroid removed. 

  • Posted

    I've been on Levothyroxine for almost 20 years now. No one ever told me, until recently, that I was supposed to take it on an empty stomach at leasst 30 minutes, preferrably an hour, before breakfast. This is why the hospitals bring it in and give it to you long before they bring in your breakfast. It is important that you stay on it until they either find the correct dosage for you or they find a suitable replacement. I have so many health problems and medications that I take, but my Levothyroxine I take first thing in the morning as soon as I get out of bed.

    I wish you all the best in trying to either get the right dosage or finding your replacement.

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