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Unacceptable side effects of Levothyroxine

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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

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  • nickienoonah
    nickienoonah Guest

    Posted

    Hello my name is Nickie i am a 50 yr old female having had my thyroid removed approx 15 yrs ago (sorry can't remember exactly when my memory isn't so good these days) it was removed due to Graves disease and i now take 150 micrograms of levothyroxine daily (i was dropped 6 months ago from 175mcg daily) i would like to say thank you because this is the first time ive seen all my symptoms in one place, (it made me cry because i thought i was suffering alone) My doctor also said ive carpal tunnel syndrome in both my hands due to my hands swelling most days (what i eat does have a signoficant effect on the amount of swelling eg: too much sugar or processed foods so i do try to stick to a meat, veg and fruit diet the best i can/afford) i can now approach my doctor with new ammunition!
    • carole76433
      carole76433 nickienoonah

      Posted

      That's brilliant for you!!! I'm so glad for you.

      When I started taking Levothyroxine I  initially felt worse but as the drug has kicked in my energy levels have increased a hundred fold my depression has gone etc , I felt like I did years ago!!.

      Like you I felt like I was constantly at the doctors feeling like a hypochondriac so when the doctor told me what it was that made me feel a bit better, but what I take with my Levothyroxine is kelp tablets and both combined make me feel like my old self again!!!.

      So at least you know what is is and can now start getting on with your life again!!.

  • glenise70823
    glenise70823 Guest

    Posted

    I have been taking Synthroid since 1999 and have been having problems since. I was placed on T3 for a short period and felt much better but for some reason my doctor didnt like it and switched me back to Synthroid. When taking Synthroid or any of its kin, it's much easier for the doctors to just do TSH testing.. However when taking T3 it requires more frequent testing and they have to test your T3 and T4 level. They dont want to be bothered. It is also cheaper to just test TSH levels too. My face is always bloated, my hair get dry and listless, my joints hurt and I get much darker than I am.A week ago my dose was was reduce to 75mcg and I cant believe how puffy my face got I went back to the doctor and they toled me to give it some time to adjust. I have never seen anything like this before. I am so afraid to go outside my house. Just praying for the best.
    • carol11091
      carol11091 glenise70823

      Posted

      Why not ask to go on Levothyrox? I believe it is the safest. It sounds as though you still have all the symptoms of hypothyroidism so I don't see how lowering the dosage is going to help the situation.
  • DJ_
    DJ_ Guest

    Posted

    I was prescribed 25mcg levothyroxine last year and recently my doc increased it to 50 mcg. I feel very lethargic when I take the medication. I tried to stop it, and I feel swelling in the neck, headache, numbness and what not!. It feels more like an addiction where once you have started, the doses are just bound to keep increasing, they help or not. Is endocrinology just limited to one drug ?
    • carole76433
      carole76433 DJ_

      Posted

      Hi DJ

      I felt exactly the same when I first started taking 50 MG of Levothyroxine , I had to take 2 months off work as my job is quite strenuous . I felt as if someone had taken the plug out of me, then suddenly after a couple of months I started feeling like my normal self again. I was advised by HealthSpan (natural medicine) to also take Kelp I take 2 a day with my Levothyroxine , and I really feel great now even started to lose weight now , so just keep it going and hopefully you should start to feel better?.  C

    • carol11091
      carol11091 DJ_

      Posted

      Things will get better but while your body is adjusting to the new dosage it is difficult.
    • DJ_
      DJ_ carol11091

      Posted

      I had taken levo for more than a year before realizing that it is creating more problems than helping. May be I am wrong, but I can't keep taking it more.

      So, I have been off levo for over a month. The symptoms that got elevated by taking levo are now better. Swelling in neck and headache is almost gone. But I am sure my levels are not yet completely normal.

      I read in an article that exercise, especially aerobics helps to release Thyroxine naturally and find it very true. 

       

  • lynda15964
    lynda15964 Guest

    Posted

    Hi yes I stopped taking it but advised my Doctor that I was going to try without it.  Advised to go back for blood test after 3 months - unfortunately my levels had dropped but was still at 'borderline.'  I felt great coming off of it - more energy, no mood swings, no aching bones [I do have osteoarthritis in my hands].  I have now been taking it for 2 weeks and my hands are swollen on a daily basis, my fatigue has returned and generally ache all over.  Have another appointment in 6 weeks to do another blood test to check my levels again.  I wish there were homeopathic remedies as I would consider taking these instead.
    • carole76433
      carole76433 lynda15964

      Posted

      There are alternatives to take, if you go on line it will tell you alternatives you can take ?. You must go and see an Endocrinologist who can tell you of your options ?. C
    • carol11091
      carol11091 lynda15964

      Posted

      Your food intake can help.

      Wholewheat bread only.

      Lots of vegetables but avoid cabbage family.

      No industrial foods; there is too much salt in them.

      No sugar ; rely only on sugar in fruit.

      No fruit juice and especially not the industrial kind. Favour eating the whole fruit.

      No butter, use olive oil

      yoghurts , fish, lean meat and chicken breast.

      Avoid food with sauces and spicy foods.

    • Moll1914
      Moll1914 carol11091

      Posted

      I found I needed to go even further to keep my weight and swelling down. No alcohol

      No Beans

      No Sugar

      NO GRAINS

      No Dairy

      No white potatoes or rice

      If I can not pronounce an ingredient I don't eat it!!

      No microwaving foods.

      Exercise 4 to 6 days a week...do I sound absessed... sometimes I feel like I am and I have been told I am by family members. 

       

    • MtViewCatherine
      MtViewCatherine Moll1914

      Posted

      Hi Moll- I totally understand the whole weight and bloating thing, food sensitivities, etc! I found once I got back on the natural at right dose, the bloating, weight gain stopped and food sensitivities except the gluten stopped. The weight doesn't magically come off, but at least it isn't increasing and the massive water retention has stopped as well!
  • Lifetime
    Lifetime Guest

    Posted

    I have been on Levothyroxine for about 6 weeks now and I have the swollen knees also (knees being complicated with arthritis).  Both my legs are greatlyy swollen while before i never had a swelling problem.  My left knee is so swollen that pain shoots down from it to my foot, and up from it almost to my hip.  What really worries me most though is that the outside of my leg, just above the knee, is numb...as if a dentist shot if up with juice to deaden it.  This numb spot is about the size of my hand with all the fingers spread as far as they can reach.  Six weeks ago my thryoid levels were "very low;" now, after 6 weeks of 100mg Levothyroxie, I'm normal??? That can't be right according to all t hat I have read about this stuff.  So far I have no swelling in my face or other places but I do have other side effects such as headaches, crankiness, hot flashes and profuse  sweating, fatague, and have gained 15 pounds over the six weeks and my stomach is highly bloated.  I take other medications and trying to schedule them around Levothyroxine is a real problem.. take them at least 4 hours before or 4 hours after you take levothyroxine but this is a medication I have to fast 2 hours, then take the medication sucralfate, then fast another hour before eating anything.  I have switched my mulltiple vitamin to evening a it has iron in it. My instructions say to take the levothyroxine in the morning at least 30 to 60 minutes before breakfast.  My mornings have become a fasting nightmare! Surely there must be some other drug to treat this problem as it seems to be a common one although I had never heard of it until they told me I had it. So I am with Guest, totally confused!  My doctor is on vacation but I have left a message that I want to see a specialist. I want him to do the tests again as I feel sure there must have been an error at the lab...you don't go from very low throyoid levels to normal on 6 weeks of 100mg, which I was told was a very low dosage.  None of it makes sense to me.  I think I should stop taking these awful pills and let myself return to my unhealthy normal before seeing the endo. I definitely want the tests to be run over as I feel there may have been a mistake in the first place.
    • carol11091
      carol11091 Lifetime

      Posted

      Cookie, it seems to me that you are on too high a dose too soon. An adult normally starts off on 50mcg for about a month, followed by another blood test and depending on the result remains on 50 or moves up to 75. Again a month before another blood test etc and the closer you get to normal levels? the less you increase the dose. eg: 75, 87.5, 100.

      I think you meant 100 mcg and not mg.

      I once stopped taking my tablets and started all over again.

      Sucralfin should be taken at least 8 hours apart from your levothyrox because it inhibits the levothyrox so perhaps ,as some one suggested, you should try taking it last thing at night before going to bed. I DO NOT RECOMMEND TAKING YOUR MEDICINE TWICE THE SAME DAY? If you decide to try taking it at night, don't take it that morning.

       

    • carol11091
      carol11091 Lifetime

      Posted

      What do you mean by 'very low' ?if you've got hypothyroidism ,your TSH is too HIGH! Levothyroxine is taken to lower it. If your TSH was very low I would suggest lowering the dosage or cutting the tablet in half until you get back to your doctor.

       

    • Lifetime
      Lifetime carol11091

      Posted

      I am new to all of this so if I don't use the right termonology, please help me.  I was told my thryoid activity was very low and needed to go on medication to replace hormones normally produced by the thryoid.  We returned early from vacation because I was so miserable.  My legs are very swollen and my feet are so big that I feel like they are in a vice when I put my shoes on.  I went off the levo a week ago but the swelling is just now starting to go out of my feet.  I went to see my GP doc and he told me that the swelling is not from water retention but from inflamation (which is good as I was worried that the chest pains I've been having were fluid retention around the chest). He offered to put me on an anti-inflamatory but I already take 2 kinds due to my arthritis.  He offered prednisone but I refused as that drug makes me climb the walls.  Can't do anything but pace the floor day and night and can't think straight...have a different thought about every 5 seconds it seems.  He was not happy I had quit the levo medication (the bottle says 100MG (100MCG) once a day half an hour to an hour before breakfast) but I am not going back on it until after I see the endocronologist in mid-September.  I should mention that I was also diagnosed with Fibromyalgia 3 years having pain response in 14 of the 18 pressure points used to diagnose the disease (it requires 11 of 18 points to be a positive diagnosis).  It has a lot of the same symptoms so I am not really worried about the low energy (I have none), overall exhaustion and sleep up to 18-20 hours a day from the fibro, so will see how the endo doctor does with me. Taking the Levothyroxine at night won't work as the fibro medication has to be taken round the clock, every 4-6 hours.  I also have a very bad stomach condition, that is why the Sucralfate, for which I have to fast 2 hours before, take the pill, then fast an hour again before breakfast and then repeat that fasting cycle after my evening meal.  I have had tumors removed from my stomach but all have been beneign.  Due to the stomach problems, I was having frequent pneumonia from the reflux of bile (gall bladder was removed years ago so now there is no place to store excess bile so it backs up into my stomach and up my throat and spills over into my lungs when I lay down, causing the pneumonia,  So I sleep sitting up in a recliner chair which works just super for the pneumonia and to which I had no trouble adjusting at all!  That is where I sleep up to 18-20 hours a day, in a chair.  While traveling I have to take with me a foam wedge to I can be propped up so I am not sleeping flat.  So adding Levothyroxine to the mix was really devistating. Guess I'm just a mess over all. I have already moved my multivitamin to evening as it contains iron.   I am moving the rest of my medications, including the Sucralfate, to lunch instead of breakfast but then the Sucralfate cycle has to be repeated in the evening after dinner.  I some times have to make choices as to wheather to treat the fibro pain or treat the stomach pain when we get our eating schedule mixed up for some reason.  Do really do hope the endo doc can help me because I guess you cannot let the thryoid condtion go untreated, although that is really what I'd prefer. The only good things I can say is that my heart, up until now, is in A+ shape, I do not have high  cholesterol, and no diabeties. My blood pressure was good and I was off all medication as of 2 years ago until now.  It is starting to climb back up a little.
    • carol11091
      carol11091 Lifetime

      Posted

      Cookie, I cannot imagine what you must be going through. I can't help you on this one but I don't think you should have started off on such a high dose. Try taking only half the dose ,50mcg until you see the endocrinologist.
    • Lifetime
      Lifetime carol11091

      Posted

      The funny thing is that after 5 weeks on the Levo my main complaint was being crabby, no weight gain.  At 6 weeks, the side effects had progressed (including 14 pounds of weight gain) to the point where I has hysterical and insisting that I needed to stop the Levo.  So why the sudden upsurge in side effects?  Why did it wait to week 6 to get so bad?  I have been off 8 days now but the swelling in my feet is about the same...skin burns, feels ready to burst, still have headaches off and on, etc., but the swelling is the worst complaint.  My feet feel better for a little while after I soak them in lukewarm water, helps with the burning but not the amount of swelling. Can't sleep as the burning keeps me awake.  Doc told me when I saw him 4 days ago that he does not know how long it will take the swelling to go away.  He was really pissed at me.  I do not know if I will ever be able to regain the comfortable relatinship I had with him which is really, really distressing as Hubby and I both really liked him and were comfortable with him.  Trust...can it be rebuilt?  I don't know.
    • penelope09058
      penelope09058 Lifetime

      Posted

      I don't hear a lot about anti inflamitory dieting in here, I think it really helps, there several books out this past year , that talk about a healthy gut , bone broth getting off glutin ,sugar, dairy, I think it helps the pain in joints and muscles, I'm off levothyrine and taking armoir thyroid it has helped but no right yet, weight is not nice, I'm not saying  that you don't have carper tunnel but inflamsion and what you eatting can make a big difference , plus taking extra vitamins, it's finding the right ones , I'm trying that now , there is a lot of good sujestions in here, you just have to you advocate and be open minded and listen to your body , I wish everyone the best in here at least we know we are in it alone, 

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