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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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  • sarah_48884
    sarah_48884 Guest

    Posted

    I have been on 100mg of levothyroxine for the passed 5 months. The only symptom I had was weight gain. I had been at target at slimming world for 18 months then just kept gaining. I was checked and had under active thyroid. Since I have been on levothyronxine I have tinitus, dry skin, aching muscles, extreme tiredness, brittle nails and hair, palpitations and I have been back and forth to the gp and they basically tell me to get on with it as I have no choice. My tsh and t4 are correct levels now so they think I must be making it up on something! What i don't understand is why they don't test t3 and why so many people are suffering and no one us taking us seriously. I got told I could come off for a month to see if my symptoms improve but I would have to go back on as there is nothing else. I have recently found out the levothyronxine in the UK is missing an ingredient that is in the us version of levothyroxine! why is this. We can't even get Armour in the UK. Why ate we all suffering and no one listen. I feel for you I really do.
    • barbara98940
      barbara98940 sarah_48884

      Posted

      Hi sarah, I've just sent you a PM with a good article and website on hypothyroidism. All the best.
    • barbara98940
      barbara98940 sarah_48884

      Posted

      Hi sarah, I've just sent you a PM with a good article and website on hypothyroidism. All the best.
    • pamela31143
      pamela31143 sarah_48884

      Posted

      I was having heart palpitations for a long time until I discovered that a lack of magnesium was related to this kind of heart problem.  There is a deficiency of magnesium in the soil, so we cannot get an adequate amount in our vegetables and fruits.  I bought a calcium-magnesium supplement, and the heart palpitations immediately stopped.  The one I take has 1,000 mg. of calcium and 400 mg. Magnesium Oxide, Magnesium Citrate.  The two minerals have to be taken together for proper balance.  Recently, I have read that the calcium-magnesium ratio should be 1:1.  That is, there should be the same of magnesium as calcium in the supplement.  I am going to the health store to see if they have this.  
    • sarah_48884
      sarah_48884 pamela31143

      Posted

      Hi Pamela thank you for your advise. I am seeing a kinesiologist on Thursday so I will wait and see how I get on with her and her advise on a natural way to deal with my under active thyroid. I will take on your advise though. I will try anything to feel well again thank you x
    • king93
      king93 sarah_48884

      Posted

      We cah get natural thyroid in the UK, check out Thyroid UK.
    • Scazzoh
      Scazzoh sarah_48884

      Posted

      Hi Sarah, I would be interested in where you found out about the difference between UK and US levo. Knowledge is power, find out about your condition so you can become the expert patient. Doctors can't be bothered with endocrine problems, it's too complicated for them. Thyroid UK is a good orgnisation and there are a few facebook pages. You will get a lot of support from there. 
  • pamela31143
    pamela31143 Guest

    Posted

    I took Levothyroxine 25 mcg. for a week, but stopped after developing a racing heart.  The racing heart continued until i got it under control with magnesium supplements.  I went on the internet to educate myself on ways of dealing with this naturally.  I take the following supplements:  Selenium 200 mgc. Vitamin E 400 mg., Vitamin D-3 5,000 IU. Vitamin C 500 mg.  B complex. CoQ10 200 mg. Zinc-Copper, Cal-Mag Citrate, Lutein 20 mg. and 2 Fish Oil tablets 1000 mg.  Go on the internet and educate yourself as much as possible to try to control this naturally.  I also exercise daily at the gym--doing about 30-45 min. of cardio on the treadmill.  My TSH levels are improving, although I still struggle with fatigue.  I strongly encourage you to do your own research.
  • susanna1948
    susanna1948 Guest

    Posted

    Hi all, I was prescribed levothyroxin 18 years ago following an RTA that threw my thyroid out of action. Personally I think doctors prescribe levothyroxin as an easy fix for an organ they just don't understand and are not interested in even getting to know and to hell with the side affects of the levothyroxin on the patient. Having complained to the medical profession of all the side affects I was suffering including painful joints that was so bad some days I just couldn't stand I decided having been told by my doctor to embrace the pain it was mine and I should embrace it and move on - I am 67 this year - I decided to just stop taking the levothyroxin- I was on 100mg per day - that was 6 weeks ago and today I am feeling so much better, hardly any pain at all, the hives have all gone, my skin is no longer dry and itching, my heart no longer pulpertates and I no longer suffer night sweats, life is good again. I have started taking ginsing to help with the tiredness and kelp to help support my thyroid while it sorts out the problems the levo caused but I am hoping that my body will repair the damage and in time my thyroid will once again function like nature intended. I find it hard to believe that I have suffered so much unnecessarily for so long and all due to the medical professions ignorance and lack of interest in what is potentially their chosen career. I am a retired accountant and if I stopped learning after I qualified I would not have remained in business for very long as the tax laws change on average ever six months surely a doctor should be made to continue studies if only to keep up with medical breakthroughs, as an accountant I had to prove 120 hours of extensive tax law studies every year in order to retain my licence!
    • MtViewCatherine
      MtViewCatherine susanna1948

      Posted

      YES!!!! And yes for the joint pain. The thyroid is located in the neck, smack dab in the middle of the highest concentration of lymp in the entire body, and just above the main lymph drainage point. Thyroid disease is cause by autoimmune disease. Or maybe auto-immune disease is caused by low thyroid. Either way, they get on a downward out of control spiral and effect each other.

      A basic concept in biology is "structure determines function". I was teaching this to high school kids when I realized the thyroid MUST control the immune system because of its location. You have to treat the immune system and get it to calm down, and you have to have the thyroid levels up or the immune system will never calm down.

      The unfortunate thing is that the synthetic levo does not work properly and therefore causes additional problems, while the existing ones worsen. Most natural thyroid meds contain allergens that further irritate the immune system- completely contra-indicated! It doesn't take a rocket scientist to put it together. But pharma diesn't care. They don't have to do good science, they only have to follow legal protocol, or appear to. The synthetic levo was grandfathered in because its been on the market for decades. All following synthetic levos only have to prove copmparability, not efficacy. Proving efficacy means the drug works and has minimal relative side effects. None of this has been properly tested. Obviously, the synthetic Sh*t doesn't work! Instead, it gets into places in the body that are protected and basically has the key to wreak havoc because it isn't the same as the natural.

      To be fair, I have heard of people using the synthetic levo without problems, but I've never met one in person. I know a lot of people with thyroid disease and the only ones who do well on any of the meds are the ones who catch it very early through bloodwork, with no symptoms. are extremely athletic, no other health problems ever in their lives.

      I had some luck in my 20s with liquid chlorophyll. Use a non0-alfalfa one made from Mulberry. A lot of Alfalfa is GMO and also very allergenic, so avoid it. Its in many products. Drinking the chlorophyl when my thyroid wasn't working in my 20s, bought me about 20 years without thyroid meds, though I didn't realize it until later.

      Herbs and acupuncture are what I'm using now along with the NDT. Turmeric and bromelin help with the inflamation that causes the joint pain.

      Good luck.

      Catherine

    • susanna1948
      susanna1948 MtViewCatherine

      Posted

      That's very interesting Catherine not to mention informative, I am just following my gut as it's the only thing I have left having been told to suck it up by the medical profession. I am now listening very closely to what my body tells me and acting on it but by just stopping the levo has left me feeling SO much healthier I wish I had stopped it years ago but was told by my doctor that stopping it was a death sentence !! how wrong were they?
    • MtViewCatherine
      MtViewCatherine susanna1948

      Posted

      It depends... I have to take a really high dose because I pretty much have all the preconditions to thyroid disease. If you are on a low dose, say 25mcg, you omay be able to get by without, but you really should be taking tons of supplements and acupuncture to try and heal. BLadderwack is a kelp that provides iodine, also supporting the adrenals because if the thyroid goes down, the adrenals get strained and vice versa, along with the immune system. You'll also want to find an over the counter tghyroid glandular, or natural dessicated thyroid of some sort.

      Thyoid diseasae controls your metabolism and low means slow, which equals rapid aging. So it is very serious. The synthetic levo doesn't work, as you know... So you need to find another solution.

      Gluten-free is also SUPER important as the protein, glten, found in some grains triggers the immune response against the thyroid and certain other areas of the body.

      Good luck on your recovery! Great that you're trusting your instincts and listening to your body!!!!

    • carmel83758
      carmel83758 susanna1948

      Posted

      The only snag with  kelp is that if you take too much you end up having an overactive thyroid. Thankfully most kept tablets are concentrated kelp with no addictives, organic, so can do no harm so long as you do not take too much. I find it helps to take a natural thryoid with it. I find that the kelp tablets that cost a little more have more kelp in them and no fillers in them so work out better value.
    • MtViewCatherine
      MtViewCatherine carmel83758

      Posted

      Iodine or kelp can also cause you to feel very jittery. Just know that's what it is if it happens.
  • Nana1956
    Nana1956 Guest

    Posted

    Hi I have been on thyroxine for 34 years I have never felt 100% but able to get on with raising my family but over the last 5 years I have so many things go wrong my joints ache muscles ache gored all the time can't cope with heat and panic if it's to hot want to cry most of the time my weight shot up by three stone in 4 months have no interest in anything neither happy or sad just feel nothing could sit and gaze out a window all day and then can't sleep at night had enough feel like no one understands these feelings waiting for more test but get no where    Leigh 
    • barbara98940
      barbara98940 Nana1956

      Posted

      It sounds like your body isn't converting T4 (thyroxine) to T3 (liothyronine) properly. So the T4 stays in your blood doing damage and giving hyper symptoms, but your tissues aren't getting the T3 they need and give you hypo symptoms. I found out by accident my body wasn't converting T4 to T3 - I stopped T4 for 8 days for other medical reasons and then had a blood test measuring T4, T3, TSH. The T4 was in range but the T3 was low. As there was enough T4 available to convert the T3 should also be in range. I'm not suggesting you shoyld do this as I don't know what other medical conditions you have going on - this is just how I found out. I am now on a natural desiccated thyroid I buy off the internet without a prescription. It works because it has T3 in it as well as T4. My GP is astonished at the transformation and very supportive.
    • susanna1948
      susanna1948 Nana1956

      Posted

      Hi Nana, as you might have read I have been on this stuff for nearly 20 years and it has only been in the last 2 years that things have started going wrong so having been told by my Doc to sucking it up I stopped taking it all together. After 3 months my body is now clean of the stuff and the damage done is more identifiable so I went back to the Doc as I was sleeping all day and all night - not really a good thing lol! - anyway I told him what I had done and more bloods were taken that has resulted in my being prescribed 25mg of levo per day and another barrage of bloods as my doc now thinks I am deficient in a number of other vitamins and minerals that are vital for a healthy life. I have been told there is no alternative to levo and without it I will die so I have no choice but it has highlighted the possible deficiency in other fields that the doc is hoping will elevate some of the affects the levo has on me. Apparently taking more than 25mg per day over the age of 50 can be quite detrimental to the body and he is thinking that might well have been the problem as I am 67 so I have affectively been over dosing for 17 years! Perhaps you ought to go see your doctor and get a full blood analysis as you might well be deficient in things like vitamin B2, B12, K, Selenium, to mention but a few, you can demand bloods it is your right especially when you are taking levo as apparently the guild lines are bloods every 3 months!

      all the best

       

    • MtViewCatherine
      MtViewCatherine susanna1948

      Posted

      There are alternatives to the synthetic levo. If you can't get the prescription natural, you can order it in the internet over the counter/ non-prescription.  I've posted this earlier, but will say again. The T4 Levo is a synthetic that has been on the market for over  60 years, and since before the FDA approval process was in place. In 2001 the FDA requested the manufacturers of Synthroid apply for druf approval, which was granted in 2002. since 1 year is not enough time for a clinical trial, its clear none were ever run. Since Synthroid has been considered the trademark, others who have come on the market later as competitors or generics, don't have to prove efficacy and minimal side effects, they only have to prove comparability to the existing drug. Its obvious that if the syntetic levo were run through a clinical trial, that it would not pass for efficacy and minimla side effects.

      I find these drug companies forribly unethical in that there are chatrooms and doctors who see millions of patients who have difficulties with these drugs and yet they are still on the market and getting the natural is not always an option, even though its cheaper and works better.

      Even worse is the synthetic Levo is allowed to be called levothyroxin, the same name as the natural. This is not allowed for other drugs, which have gone through the FDA approval process. Ie- all the synthetic hrt hormones are named by their trademark names and are not called estrogen or whatever hormone they are ment to replace.

      By this site, its clear that the side effects of this drug far out weight the benefits. I switched to a natural one called WP and am doing better on it, but the effects of the synthetic are still apparent as I look in the mirror and have aged ten years whileon it for one year. I've been off now for a year and am doing better, along with acupunctre.

      The natural contains both T4 and T3, but I still seem to have the hypo/hyper symptoms, so suspect the synthetic has damaged my immune system so that it is reactibg against even the natural one. The only solution I've found for this is to take massive doses of the stuff for about two weeks until the body's immune system realizes it can't possibly keep reacting to all this stuff, and stiops. But this also results in panic attacks and doctors don't l ike this approach because the side effects are also amlplified even with the natural. And its just uncomfortable in general, even though its only two weeks.  I certainly would NEVER do this with the synthetic, because that would really mess up the immune system!

    • barbara98940
      barbara98940 susanna1948

      Posted

      I think there is some confusion here. There is no problem taking more than 25 mcg over the age if 50. It is recommended that over the age of 50, one should be started on a dose of 25mcg. I read somewhere that the dose should be 1.7mcg per kg of body weight.
    • LAHs
      LAHs barbara98940

      Posted

      Yes, 1.7mcg*body weight in kg...BUT.....you are also supposed to ether divide or multiply by TSH and since TSH is largely dependent upon the functionality of the pituatory and in many people unreliable, it knocks the formula out of the water. 

      If your TSH is = 1, of course, it works.

      Oh, and Catherine is dead right about synthetic T4. In my humble opinion and from first hand (horrible) experience it should be recalled from the market.

    • LAHs
      LAHs Nana1956

      Posted

      Nana, look into the date when you started to feel the bad symptoms. I was on Levo when I first had my thyroidectomy and after about 2 years of messing around with my dose I finally got a dose which made me feel OK. Then that patent ran out for that manufacturer and our generic came from somewhere else. That was December 2012. The new pill came in January 2013 - and it was all downhill from there. Like you, my weight shot up (35 lbs in 3 months) and in moved the joint pains, the no desire to do anything etc, etc.  You could try other manufacturers, there are about 12, or switch to an NDT (Armour is a proven winner). Hope this helps.
    • MtViewCatherine
      MtViewCatherine LAHs

      Posted

      Interesting, the timing on the patent running out.... I know that until about 2013, it was often difficult to get the NDT. Manufacturers (both Armour and Naturethroid) would be "back ordered" for 6 months at a time. I found this to be the case with several of the NDTs and my pharmcist recommended keeping a year's worth on hand in case of a shortage. It seems now, there is no longer a shortage, so I'm not sure what was causing the shortage back then.
    • LAHs
      LAHs MtViewCatherine

      Posted

      It was two things - and this is off the top of my head, I haven't looked up all of the details. However, as I remember it: Big Pharma was trying to do in Forest Pharma - the latter was making the super stuff, the original Armour. First they accused them (or brought to light) of either not having the acceptible fillers in them or having the wrong ones, which caused them to have to retool. Forest obliged with this and many people were disapointed with the new pill. However, Forest survived. this wasn't good enough for Big Pharma they forced Forest out of business as thier patent ran out (for Armour) in December 2012. This resulted in Forest being bought out by Activis (a big Pharma). Before 2012 Forest used to make  a Levo which I was able to take (at the right dose!) but after they "shut down" all hell was let lose.
    • MtViewCatherine
      MtViewCatherine LAHs

      Posted

      Holy cow! That would certainly do it. You know if you do a searcg for Synthroid, they have been on the market since the mid 20th century, but were only approved in 2002, after the FDA requested thay gain approval in 2001. Clearly, one year is not enough to test a drug for efficacy. This made so much sense to me, since from the moment, I started taking the stuff, I was so ill, I felt there was no way this crap could ever show efficacy with reasonably minimal side effects. Duh, its becasue they never did. All the levothyroxins are based on the synthroid drug. So my guess is that none of these drugs have ever been properly tested. Crazy, but on par with what you said.
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