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
  • kirsty2478
    kirsty2478 Guest

    Posted

    Hi I been trying for a baby for 19 months now I had some blood tests done during my cycle first was 5 days through and second was 21 day in.

    My results came back I had an under active thyroid and I wasn't ovulating so my Dr put me on Levo I have now been on these tablets for a month taking 25mg every morning.

    While on these I have experienced ransom dizzyness and my voice has changed feels like I'm loosing my voice but I'm not also it suffers from being dry all the time I also go through a strange stage everyday where I feel agitated (this could be coz I'm crazy lol)

    I am not 3 days late for my period I'm hoping I'm pregnant but not getting my hopes up as I've been told I'm not ovulating is there anyway that after being on levo for only 1 month I have ovulated.

    I've had some blood tests to see if levo has started working and is improving my thyroid gt my Dr appointment to get the results Friday.

    I suppose I just wondering if anyone has anything similar to what I am experiencing and I'm looking for advice as I'm new to this and never had a health condition before.

    Before I was diagnosed I thought I had anemia

    Help would be much appresiated x

    • MtViewCatherine
      MtViewCatherine kirsty2478

      Posted

      Hi Kirsty- Well, hopefully you're pregnant already! You didn't mention anything else about your health, other than yoiu thought you had anemia, which tells me you have very low energy.  You're on the right track because you got a diagnosis of low thyroid. You probably want to make sure you have a full thyroid p anel after three months on the meds to check your T3 and t$ freen and total levels, becuase if one or the other is low, you need to increase the meds. 

      After reading many postings here and my own experience, I don't think the levo is effective for folks that need a high dose because the side effects are compounded. Hopefully the 25 dose will work for you. You'll want to do a little research yourself and find out what your TSH levels and other  thyroid levels were prior to starting the meds, so you have an idea how low you are. If your condition is mild, you should be fine, if it's severe, you'lll need to get some alternative medical experts who specialize in naturopathic medicine and herbs.

      If the thyroid is very low and has been for a long time, your hormones can get really out of whack, and unless they do a full thyroid panel and full hormone panel, and you're working with a naturopathic genius, it could take a really long time to get your hormones back on track.  Since most people don't have that, here's what I did:

      1. Go gluten-free, this stops the auto-immune attack on your thyroid  (there's a whole science to this, you can research itor just try it) in this case a little is not OK, so no wheat, rye or barley in any amounts.

      2. Liquid chlorophyl (from mulberry leaves, NOT alfalfa!!!!) helps heal the thyroid, so I take 1-2 teaspoon of that a day.

      3. I got a book on hormones (reluctantly, but I'm delighted by the success!), which recommended herbs to rebalance hormones.  The book I used, recommended bladderwack and vitex for low progesterone. It turns out the bladderwhack is a kelp so it's also good for the thyroid because it contains natural iodine.  

      4. You will need a good source of iodine- check with your local healthfood store for recommendations.

      5. Get a book on natural hormone cures. Unfortunately, this site doesn't allow people to name resources. You'll need a book that helps you self-diagnose which hormones are low and gives natural herbal cures. A lot of people get into all the hormone treatments with synthetic hormones. I don't recommend this because the body doesn't process them properly and they end up causing a lot of problems. Go with the herbs and natural products instead. Hormone imbalances are extremely common among women of all ages, because of the toxicity of the world. One of the most common issues with women is estrogen dominance. Sounds great, but high estrogen throws the rest of the hormones out of balance.

      6. If you've been on any fertility drugs, this will really throw things out of whack. So... Vitamin A is a natural cleanser for hormonal residue, so I recommend 8 oz of fresh carrot juice per day to flush out old hormones. This is also great folowing pregnancy. :-)

      7. The last recommendation I have is to give yourself three months. I know that's painful, but you want to be healthy and you need to give yourself a little time to get there because low thyroid also causes miscarriages, which you certainly don't want.  It takes three months for the thyroid meds to become fully effective and if you test earlier than that, you can get a false spike in thyroxin levels, which makes you think you're fine, but you aren't, so testing early can actually lead to a lot of craziness as far as dosing. In the three months you're waiting for the thyroid to regulate itself, you can look into the rest of your hormonal system and rebalance it with the herbs. The herbs take 1-3 months to be effective. It took me about 6 weeks on the herbs.

      You might want to print this out and read a little at a time because I know it's overwhelming. This comes from years of troubleshooting my own thyroid disease. I'm hoping yours is mild and you can get on track quickly! You'll get there! It's just a process of taking care of  yourself!

      Good luck!

      Catherine

       

    • kirsty2478
      kirsty2478 MtViewCatherine

      Posted

      Hi Catherine

      Thank you for your advise this has helped in the diet I need to do to help my thyroid

      Take care

      :-)

  • Dubgirl00
    Dubgirl00 Guest

    Posted

    Hi i went through the same as you and tried for a baby for a year and after a month of taking Thyroxine Levo i fell pregnant.  I have not gone into the diet part of it but feel great on the supplemtn T3.  
  • MtViewCatherine
    MtViewCatherine Guest

    Posted

    I was on the levo for a year and a half. During that time, some major symptoms were massive weight gain, massive water retention, this weird fat on my armpits, behind knees and back, breasts were enormous, went from a 32c to a 36dd- seriously? I suppose I should have been in heaven with that bust size. Clearly I haven't lost my sense of humor.  Bp has always been super low, but went to the high side, triglycerides through the roof. These seem to be obvious symptoms of hearth failure, yet four doctors didn't recognize this. 

    Most of these symptoms decreased when I went back to the prescription natural dessicated thtroid. But I recently had another bout with the massive water retention. I (hope) I've managed to get it down, as for the moment, with some liver cleansing and acupuncture, I'm feeling much better. However the repeated bouts with this massive water retention along with the treatment protocol from the acupuncturist, for heart problems leads me to the conclusion that I now have a potentially serious heart condition. After a search of levo with heart disease, it's clear this med causes it. However untreated thyroid disease also can result in heart problems. I suspect that the combination of the low thyroid and the unsuccessful treatment with the levo- the levo never seemed to work properly for me other than to show "nice" blood levels- compounds the probabilty of heart problems.

    I'm to the point of going back to my previous doctor (where I used to live) 4 hours away, since he seems to be the only one who knows how to treat the thyroid properly.

    I dont have any interest in going through another loop of medical insanity with the heart issues, as the medical solution for this is more meds and cutting. I'm terrified they'll make things worse! I'm so weak after all the thyroid disaster on the levo that I couldn't tolerate any more meds anyway.

    It seems like the more I go to the doctor, the worse I get and I've had success with accupuncture and chiropractic, visceral massage, and other alternative treatments. So I'll go with those as long as they are helping.

    Anyone else having the heart issues? Do they go away eventually? Or do you end up on the heart medical track for the rest of your life.

  • athina43
    athina43 Guest

    Posted

    Hi i have the same symptoms as you since i have been on thyroid meds (4 years)

    i have felt deathly ill everyday i have tried every thyroid meds there is but still get

    terrible side affects from them some are heart issues shorts ob breath neck leg and foot pain hair loss and the list goes on and on and on today i did not take any but that will be just for a few days then my tsh will go sky high again the doctors think i am totally insane when i tell them my symptoms my new Alternative doctor has put me on high levels zinc NAC progesterone selenuim multi vit i feel so ill with this hashimotos oi filed disability wendy

  • barbara98940
    barbara98940 Guest

    Posted

    Hi everyone, There is an interesting paper on the The Medicines and Healthcare Products Regulatory Agency (MHRA) titled 'levothyroxine tablet products: A review of clinical and quality considerations'. Dated 7 January 2013. Essence of which is that there is evidence to show that levothyroxine can lose its efficacy over its shelf life and some people are sensitive to this variability. Also the acceptable limits are 90%-110%. This explains why some people have difficulty stabilising on Levothyroxine. Then there is the added complication that some people can't tolerate some of the 'fillers' that are used. So as a minimim we need to use the tablets well within their use by date.
    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      Yes!!! The variation in dosage is an onging porblem. The required specifications you omention for the meds of 90-110%, allows manufacturers to vary dosage from lot to lot by as much as 20%!!! In addition, the tghyroid conditions themselves result in varying amounts being produced by the body. ie, with Hashimoto's, it is typical for the thyroid to work sporatically, producing high and low levels in the body.

      This variation in thyroxin results in a constant roller coaster ride- YUP!

      To solve this, I keep a stash of spare medication in my freezer. I self-monitor, and if I feel I've been a little low for a few days in a row, I take an additional partial dose for just one day to see if that helps. Sometimes I have to do this for several days in a row.

    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      Hi Barbara,

      Thanks for getting the information out.

      Unfortunately, this site is more concerned about people trying to sell stuff, than they are about people being ale to share resources. Unfortunate because sharing resources would be really helpful!

  • LAHs
    LAHs Guest

    Posted

    Identical story here! I asked for a simple T3 to be included with the T4 and TSH the dr. was prepared to give me and I was told NO! So no chance of getting a full Thyroid panel to get to the complete picture (and therefore cause of my hypO symptoms).

    I decided to pay for my own complete Thyroid Panel through an independent lab - and I am awaiting the results. I'll keep you posted.

    I am beginning to think that this synthetic drug is in Beta test and forums like these is giving them feedback.

    • MtViewCatherine
      MtViewCatherine LAHs

      Posted

      Hello- Feeling like you're a beta tester. I completely understand. Clearly, if it had been properly tested, it would never have gotten on the market. Guess what! It never was tested or approved. At least not in the US, where it is the preferred treatment. However, levothyroxin has been on the market as Synthroid for over 60 years. This drug was never approved by the FDA (I'm in the US) and in 2001, the company producing Synthroid was asked to apply for drug approval. See New York Times article dated July 24, 2001. Leveothyroxin is the generic, Synthroid is the brand name.  This answers a lot of questions regarding this drug. Since levothyroxin was already on the market and in use in the form of Synrthroid, it wouldn't have taken much to get the generic out there, because they only have to prove its comparable to Synthroid, not that it works.Chemical test, not clinical, or compare bothto see that the generic is "as good", type of test. This explains a lot about why this drug doesn't work.

      Drug companies must get FDA approval based on certain parameters. FDA will not allow new drugs if there are already a lot of existing drugs on othe market for a particular disease. So common diseases, like asthma, that already have many medications, have a tougher time getting new drugs. Drug companies get around these restrictions by doing clinical tests on drugs for a condition that doesn't have a lot of treatments. Once the drug is approved, companies can market the drug for any purpose, ie, heart medication to treat hairloss, headache injections for wrinkles, Cystic fibrisis medication to treat asthma, etc. This is standard for drug companies and is considered a completely legitimate business practice. Shockingthat this drug is allowed to be sold at all.

       

    • LAHs
      LAHs MtViewCatherine

      Posted

      Hi MtVC,

      I haven't seen your postings lately. Are you OK? I sent you a private message a little while ago, was hoping we could meet up. I was in the area for a few days. Anyway, let me know where you are posting and how you are getting along. It took me a long time to learn how to do PMs, anyway, let me know.

    • MtViewCatherine
      MtViewCatherine LAHs

      Posted

      Hello LAHs, Sorry I missed our note. I'm OK. I've actually been making som edecent progress.  Would love to meet and compare notes. Send me a provate note please and we can exchange contact info.

      Catherine

    • LAHs
      LAHs MtViewCatherine

      Posted

      Hi MVC

      Please read your PM folder - I'm not very good at PMs but I managed to write one to you.

      LAHs

    • cm97090
      cm97090 MtViewCatherine

      Posted

      MVC - Thanks for all the info you and the rest of the posters have shared. I'm close by in SCz County. Regarding this particular post, I wanted to say I take milk thistle and do not have any allergy to it. Since I - and probably many thyroid sufferers - also have Hepatitis C, milk thistle is well-studied and is proven to be an important, helpful regimen and tonic for the liver, so just want to encourage folks not to rule it out until they try it for themselves. And, of course, make sure to be tested for HCV which is epidemic and many don't realize they have it. As for my low thyroid condition, I'll do a separate post about how my levothyroxine side effects emerged as soon as this dang withdrawal headach subsides!
    • MtViewCatherine
      MtViewCatherine cm97090

      Posted

      Hi CM- You're right on with the tliver being important for the thyroid! I don't have Heapatitis, but I had some severe liver damage for other reasons.

      I'd recommend turmeric for the migraines. I've found it to be very helpful in calming the migraines. It calms the glial cells that cause the pain, hence, reduced pain.

      I recently tried a combination of Frankencense and Myrh, for the stomach and liver healing. Its cheap  and easy.

       

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.