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 should also point out that Iam on 150mcg of thyroxine. Maybe higher levels have more impact on blood pressure. 
  • Posted

    It didn't work for me.... I am on a compounded desicated natural thyroid replacement.  Much better because I get it in TIME RELEASE capsules.  That makes a big difference.  I am just getting up to a more normal dosage and on days when I'm under a lot of stress I use 45 mg.  It sounds to me like you were never told that Thyroid replacement SUPPRESSES YOUR ESTROGEN.  Low estrogen makes your knees hurt and a lot of other things!  I figured it out and once I went on compounded Estrogen and Estriol (bi-est) the pain went away immediately!  If my knees start hurting I know my estrogen is low.  Its that simple.  I had tip of my uterus removed for large fibroids.  Ultrasound is way to go with that however if you have a healthy uterus because they turn into rubber and can't regrow.
    • Posted

      Thanks for that advice , I cannot stand the heat I break out in hot sweats a lot!!!. Now I'm suffering with stomach problems, short of breat going up hills, palpitations I'm sick of it all, and to top it all just had a melanoma removed and have to have some lymph nodes removed, so it seems to be a downward slope since diagnosed with hypothyroidism !!.
    • Posted

      Your symptoms are those of too much thyroxin; being out of breath is one of them too and I can only suggest that you go and see your doctor as soon as possible.
  • Posted

    Hi there I first left comments some weeks ago because I had decided myself to stop taking Levothyroxine.  I advised my Doctor and they agreed to leave it 3 months then have a blood test done.  I agreed to this and my first test showed that my levels had dropped - now as far as I know I am what they call borderline.  The Doctor I had my appointment didn't really answer any of my concerns as I seem to have the opposite effect from taking it to what should be an improvement taking it!!!!  I have now been on 25mg [this was the starting dose for 8 weeks then another blood test which I have just had today] so no results for a few days.  I am now on my last week of 25mg.  The tiredness has returned, my eyes are what can only be described as 'tired' all the time, I am having sweating, an in general my bones ache all over.  Why do they make me feel worse when taking them - does anyone know - can your body reject a drug???????  I also might add I have booked an appointment with my Doctor [next Fri] where I am hoping to discuss these symptoms that have returned since taking Levothyroxine again and get some sort of advice/answers.
    • Posted

      Hi Lynda

      Write to the manufacturers of the drug they are very good they will get back to you and you will find their address on the side of the box, if not then ask the pharmacist for the address they will be happy to give it to you. If we don't let them know how can they do anything about it ??. Good luck!!  C

    • Posted

      lynda 15964     If the Dr said you were borderline it is possible that you shouldn't even be taking it or only once every other day .

      I spent the better half of the morning looking things up , for myself, and unless your tsh is more than 10 standard procedure is not to take anything. Sweating is a symptom of hypER thyroidism so my guess is you shouldn't be taking it.

    • Posted

      Hi Lynda- Yes! Your body can reject the drug! I had a horrible time on levothyroxin, which was compounded by the fact that the dose was way too low. That said, it sounds like the symptoms you're having are caused by low thryoid. This could be because your body is unable to use the drug properly. So there are two issues to consider with the thyroid meds: is your body using it? Is it the right dose? If  your body isn't using it properly and your numbers are at the high end of normal, and  you still feel horrible, you may need to try something else.

       I don't know why the doctors start everyone all over on a really low dose of 25mcg every time they switch meds. But that's a recipe for years of not solving the prolem because if they raise it every three months, it will take forever to get where it needs to be if you need a high dose. Then you also have to take time for your body to recover from all the down time where it's been rapidly aging.

      Keep in mind that thyroid medication takes about three months to completely level out. There are stages along the way of course, but when you first start taking it, it will often spike your blood work, which makes it look like you're taking too much. An expert doctor generally waits the three months to look at blood work. Also, your other doctors (at least here inthe US) always want to test your TSH and will freak out if it's too low, but that often happens withthyroid meds, so it's really pretty normal. You also need a doctor who will do a clinical exam and ask you about your symptoms. For example, if  your fingertips are colder than your plam, that's low thyroid. If you are consistently having difficulty swallowing, the meds could be too high, or theyhaven't leveled out yet.

      If you were not off the medication for three months, you may still be experiencing a drop in the old medication as you start the new one. And your own thyroid needs time to turn back on, which is why they like the three month time. I don't recommend not taking thyroid medication. The thyroid is pretty much paramount to all the body systems. The location alone indicates that the thyroid is intimately involved in immune system regulation, as well as water and food metabolism. Dr, Barry Sears talks about low thyroid in his book "The Anti-Aging Zone" as the number one worst health problem to have because it ages you prematurely. 

      The symptoms you're having with the baggy puffy eyes, weird sweating and tiredness are typical symptoms of low thyroid. Unfortunately the symptoms of low thyroid are often very similar to the symptoms of high thyroid.

      If your dosage before was high enough and you feel the levothyroxin is making you sick, you may want to switch to a compounded natural dessicated thyroid. I found it doesn't trigger my immune system as much.

      In the end, my experience has been that every time I don't feel well, it's because the thyroid medication is too low.  However, with the levothyroxin, it took me a year and a half to get it up to a dose that felt like it was in the right range for me and I still felt horrible on it. Which is why I switched to the natural. Much better now, though it's only been one month. I switched to the same dose in the natural that I was on for the levothyroxin and it's somewhere in the right range because I'm finally able to function without falling apart.  Hope that helps!

  • Posted

    I completely understand, I was diagnosed with under active thyroid when I was 14, I stopped taking my tablets for about a month, maybe a month and a half and ,ymsymptoms just got worse and worse, it was up to the point where my mum had different people try to ge me to take them.  I was told so so many times that if I didn't take my tablets I'd end up in hospital but lately I'm trying to decide whether or not to drop as my joints are in a large amount of pain and I think it may be because of my levothyroxine as they have recently upped my dosage, I hope this has helped xx
    • Posted

      Hi Charlie- I experienced a lot of pain on the levothyroxin as well. I take turmeric, which helps a lot, and eventually realized that the levothyroxin was triggering my immune system and causing horrible weight gain, inflammation, water retention in the whole body, and heart failure. I finally came to the conclusion that I'm allergic to the levothyroxin. Not in the traditional allergic reaction, but in that it triggers my immune system to react. Because of this, I feel the levothyroxin may also have been inneffective in treating the low thyroid even after raising the dose so that the blood work was on the high end of normal.. So whether the symptoms were caused by the immune system being triggered or the low thyroid is inclear.

      Also, because of the lack of bio-identical thyroid medications and delivery systems (taking it orrally is nothing like having it produced in the thyroid), most people feel best when the thyroid levels are at the high end of normal range or just above normal. Unfortunatelyunless your doctor is a specialist, they seem to get really freaked out if your levels are high, which also zeros out your TSH. But having low TSH on thyroid medication is fairly normal.

      Keep in mind that most thyroid disease is caused by autoimmune disease, so that's a huge consideration in your overall health. I found I'm doing much better on the natural dessicated thyroid. Good luck to you!

    • Posted

      hi,

      i have found out that i have somethig called fibromyalgia, it was luckly nothing to do wth m thyroids, thankyou for your hlp it was much appretiated xxxx

  • Posted

    Hello there everyone who has replied - your comments are much appreciated it's nice to know that many other people with this condition are having similar problems/reactions to taking levothyroxine.  It seems that little follow-through research is actually being done with sufferers and maybe if enough of us shout loud enough then they [doctors/researchers] might just sit up and take notice.  I am, unfortunately, not holding my breath.  I will post again when I have visited my doctor this coming week.  Thanks again x

     

  • Posted

    Hello  to the folks sufering with levothyroxin. I was on this for a ear and a half and was experiencing extreme water retention, weight gain, exhaustion and severe achiness in my entire body with fibromyalgia sympoms. I gradally increased the dose until it was obvious that THIS STUFF DOES'T WORK in any dose! I switched back to the natural dessicated thyroid and am feeling much better now. The natural one still isn't an exact biological match, but at least the human body can use it. My advices that id elevotyroxin doesn't seem to work well when you start switch to the natural dessicated thyroid.
  • Posted

    Hi, I just wanted to say again that levothyroxine does not suit lots of people.  Look on the many alternative thyroid websites for great advice.  Its difficult to take in all the info when you are not feeling well but its the only way that anything will change.  On levo my weight went right up, I had fibromyalgia, low ferritine, low vit D, High ANA etc. etc.  I've now been back on natural thyroid for 6 months and feeling and looking lots better.  Doctors usually will not help you  with thyroid problems so you have to do it for yourself.  Also adrenal function should be checked.  Best wishes to all.
  • Posted

    Hi there....

    I live in the US and yes we take that seriously here. i have been on levothyroxine for 7 months now and the side effects are so much I have quit taking it 2 days ago. Along with my diabetes meds. I felt like I was dying and told my doctor over and over this that these meds are killing me.

    The side effects are weight gain...I was 165 10 months ago and npw I am 186 lbs.

    I am a musician and my hands are so important to me and i could barely make a fist in my left and not on my right. The joint pain was excruciating. The all over body aches were tremendous..I got bed ridden for two days. 

    The fluid retention was so bad that I would gain 6 or 7 pounds on one meal. I am now going to see a cardiologist to evaluate my meart. My blood pressure is always normal. I have pericardial effusion which is water around my heart and thyroid and untreated hypothyroidism causes this. My heart had always been normal. I have itchy skin and puffiness and brittle hair and nails and I am crying all the time.  I feel like I am being poisoned. The quality of life for me has declined terribly in the past 4 months. I decided since my GP and my endocrinologist would not take me off of the levothyroxine since I have asked more than once...to tell my doctor I am going off of it.....I told her to find me another endocrinologist that will help me and listen to my symptoms. This medication is not right for me. I feel it.

    Since I have gone off of it...My hands are healing somewhat....I can grip in my left but still not in my right. But it has only been two days...I do notice a difference in my aches and pains also. My muscle aches are not as severe. 

    I am trying to get into seeing a nuropathic doctor in hopes if we treat the whole body I will regain some quality of life. i have a strong belief in my God who is helping me and guiding me to the right medication. 

    But this med I will say is not the best for everyone. I am asking for CYTOMEL.....it has both t3 and t4 in it.

    When I first went on Levothyroxine...they told me when I get the correct dose and my thyroid is normal I will feel so much better and they are wrong I feel worse after 7 months. my thyroid is a 1.3.  Where is the feeling normal I still have all the symptoms of thyroid. 

    Thank you

    • Posted

      Hi

      After reading what you have been through I feels osprey for you.

      It might be a good time to try a natural thyroid, if you google it by putting natural thyroid it gives you a few options?.

      Then go and see a natural endocrinologist who will help you. But if you look on the side of the medication box it will have the pharmaceutical company that make it, if you send them an email telling them all the side effects you are getting? They should contact you and your Doctor re the bad side effects you are getting?.

      I hope this has helped you a little?, and good luck!!! C

    • Posted

      I am on a compounded desicated thyroid which is time released.  That works well for me.  I am going to try Naturoid next month see if it is the same.  I have been seeing an acupuncturist and I have been feeling better.  I lost 10 pounds in 2 months on my current dose of 30mg.  Mine has T3 & T4.  Synthroid just made me feel ungrounded and sweaty.  The time release made a big difference for me.  I will see if Naturoid is the same as what I am on now.  USA
    • Posted

      Hi

      I'm so glad you have found something that suits you  at last. I'm still on Levothyroxine 50 mg, I've just had a melanoma removed and they took a blood test and found my thyroid level normal?. But I am still getting hot sweats and sometimes I'm getting brain fog, but I'm trying to diet and I didn't eat anything yesterday until the evening and it was really bad!!. I seem to crave for sweet things a lot and my eye sight has deteriorated so bad also?.

      I really don't know where to go from here?

      Any suggestions as I have never been fat but I'm putting on weight due to me craving sweet things all the time, which is why I'm stopping all the sweet stuff??  Carole

    • Posted

      Blood work always shows normal but naturopath doctors will treat you for being on the low side of normal.  If you aren't on T3 & T4 you aren't absorbing the T4 which means you aren't feeling relief. My hot flashes were caused by low progesterone. My acupuncturist gave me a chinese herbal remedy that triggers my body to produce it naturally.  That is working. I take it 2X day. Get your thyroid checked by best lab for this.  Get a female comprehensive test. They cost about $400 USD.  They will tell you what your levels are in the results which  you view online and download as a pdf.  They check your T3 and T4 and tell you what you need to balance. I craved sugar my whole life too, you are self medicating because it gives you energy. You know dairy suppresses your thyroid,white sugar, estrogen. There are a lot of good books about thyroid. 
    • Posted

      Hi Carole,

      What the other writer said is true. Acupuncture is amazingly helpful as you're going through this process. It rebalances and stablizes things. If you can't afford one, most of the acupuncture schools have clinics that are very good.

      The hot flashy things you're getting are what I call thyroid flashes. They happen when the meds are too low. You also can tell lthe meds are too low because of your unusual weight gain. Temporarily you can ice the cack of your neck to reduce this problem. but really, the meds are too low.  Rest assured they are not hot flashes, as you will notice your cheeks are not hot. Right?

      Because the delivery system of thyroid meds is artificial, many people feel better when the meds are on the very upper limit of normal, or even a bit above. It takes three months for the meds to level out after each adjustment. If you get bloodwork too early, you'll get a spike in your numbers that makes it look like the meds are too high.

      I tried the compounded levothyroxin for a year and even when the levels were right (the top pf normal range), it didn't work right for me. I'm feeling much better now after switching 2 months ago to a compounded natural dessicated thyroid, but still haven't lost the 30 pounds I gained from the levo.

      You have two choices: 1) try increasing the levo to see if it works for you, because it's obviously too low.

      2) try switching to natural meds to see if that one works better.

      The thyroid is intimately involved in immune system function, although western medicine seems blind to it. Just look at the location, and it's obvious. So with thyroid disease, you get immune system issues.

      Try acupuncture and go gluten-free. Really give the gluten-free thing a good go because it will be enormously helpful for your immune system health. Healthy immune system= healthy thyroid, as most thyroid disease is caused by autoimmune problems, wither Hoshimotos or Graves.

      Hope that helps!

      Catherine

       

    • Posted

      Thank you so much for the advice I certainly will try what you suggest to see if it helps.

      Thanks again

      Carole😊

    • Posted

      Hello Catherine

      Thank you so much for your advice, I will indeed try the suggestions you have made and see if it makes a difference hopefully it will?.

      Thanks again Catherine

      Carole😀

    • Posted

      Carole, one more comment. While acupuncture is great, you may want to use the hebs with caution. They work well for some people. But for me, they'd work for a while, then they'd stop working and I was in worse shape than I started. So it basically just wasted a lot of time for me trying all sorts of different herbs, when I should have been dealing with the meds because they were too low.

      You could try them, but if you're back to your symptoms and all brain fogged and can't figure out the problem, you just need to increase the meds and or change them.

      I tried everything before the meds and tehre was no way around it. When the thyroid isn't working properly, the rest of the body degrades, resulting in a system meltdown. More important to keep  your body healthy while you're solving things by taking the meds than to let your whole body go down. Dr. Barry Sears in the Anti-Aging Zone book talks about low thyroid being the number one  worst problem for aging.

      Keep this in mind as you're trying things! Good luck!

       

    • Posted

      Hi there...

      Thank you for responding to me...I have never considered acupuncture but I am awaiting my first appt with my natural pathic doctor. I am very hopeful and I have been asking to be taken off this medication levothyroxine and the doctors simply do not want to give me anythiong else. I know this drug was killing me. I had to go completely off of it at my own urging to find that out. The doctors were not listening to my symptoms and just diagnosing other issues. I told my doctor I do not feel that my body is not accurately absorbing this med and she just did not listen to me. I have hashimotos....I feel I need t3 along with my t4....I think after 7 months if the levothyroxine is doing nothing but lowering my tsh then there is something wrong....I still have every symptom of hypothyroidism. Thank you again and good luck on your weight loss.....

      Cameron

    • Posted

      You're welcome Cameron. Hope you're able to try the natural dessicated thyroid meds. Glad you're going for the acupuncture. It will get you through as you're figuring everything out.  I'm inspired to get back and plug away at the weight, now that I'm feeling better.

      Take care!

    • Posted

      Hi Carole, your cravings for sweets can be you are lacking Potassium. I find when I eat a bansna it calmss my sweet desire. I also get severe cramps aka charley horse in my feet n legs and then i know i had too many sweets n low on Potassium. I am diabetic as well as low thyroid. Had mine removed due to cancer.

      The sweating was indicative of lymph node cancer as well.

      Try a banana a day and see if that helps ur cravings and sweaty moments. Good luck !

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