Having Bad Side-Effects on Levothyroxine

Posted , 7 users are following.

Hello,

I think a lot of my problem is my own making and I'm really sorry. But basically I have really bad anxiety problems, and I have also been very paranoid of and scared of my medication. My doctor is lovely & has been coping with me & my meds the past 8 years. I was diagnozed at 18 and I am now 26. 

Anyway, I haven't taken the meds properly in the last 2 or so years. I've taken them now and then for a few weeks and then stopped. Partly because of side effects and anxiety. But my last blood test showed crazy high levels and my doctor said I need to take them regularly now. I think, right now I need to start being responsible about it. 

I've been on them regularly now for a week or near enough a week and honestly, I'm getting such horrific headaches. I feel dizzy all the time. It's hard to focus. It hurts. 

My dosage is 175mg. It must be just like going straight onto that because of how i hadn't been taking it regularly before.

Are these side effects normal, or should I take a lower dose or wait it out? 

I've been reading about people's experiences, with hair thinning, gaining weight, etc. I thought these were the types of things levothyroxine was supposed to combat. I all ready have such low self esteem in how i look that i rarely want to go out; i don't want it to get even worse because then the cycles of being anxious and depressed continue.

I'm honestly just so... Fed up of being anxious and having headaches and being ill. Please help. 

0 likes, 13 replies

13 Replies

  • Posted

    There are more knowledgeable and more experience members here who can help you more than me but here is my two cents - I've been on varying doses of the med for almost a year. my endocrinologist says my thyroid shut down because of radiation therapy i rec'd a year ago and that is why I became hypo-thryoid and need the med. to my understanding the hair loss, which i have experienced in eyebrows and eyelashes, is not from the med but from being hypo-thyroid. once the appropriate thyroid hormone level is restored in a human body, the hair is likely to come back. so far for me this has not happened. everyone is a little different in how the condition effects our bodies and also how the med might affect us as well. im not a fan of taking meds either and feel like in the case of levothyroxine, once we are put on it, we have to take it the rest of our lives - a bad deal and not all of us are told that from the start. everyone here will warn you that you must follow your dr recommendations and not vary the dose or regularity for taking the med. thyroid is a very slow acting hormone and it takes weeks or even a month or more for any change in dosage to have stable effects in most of our bodies. you must be patient (no pun intended) and give the med time to work - assuming you are taking it on time every day per instructions. now watch for other responses that will be much more qualified than mine. best wishes.

  • Posted

    Hi Pandacake, I also struggled with all sorts of symptoms for the past 8 years. I will share some things that helped me get almost back to normal in hope to save everyone else the pain.

    I had my thyroid removed and now I am on 150mcg levothyroxine. I had side effects like:

    - anxiety & panic attacks

    - easy to get tired

    - trouble sleeping

    - muscle cramps

    - joint pain

    - inflammation

    - mood swings

    - depression

    Doctors were for the most part ignorant as long as the blood tests were fine. I did complete blood work (not only thyroid) and looked perfect but I was feeling like crap. I tried myself multiple things to improve my life quality and the things that worked are:

      1. try different brands of hormones, even though all have levothyroxine, the body reacts differently to each one. At first I was on Euthyrox and it was completely bad. This helped improve things by 20%

      2. split the dose during the day. I take 150 as 25 in the morning, 50 before lunch, 50 before dinner, 25 before sleep. Also at lunch I take it with a complex supplement of magnesium, calcium, D3, B6. This helped improve things by 20% 

      3. exercise to burn all the extra adrenaline. Gym, sports & jogging work very well, yoga also helps, but better to have action exercises. This helped improve things by 20% 

      4. eat properly. I gave up all animal protein a couple of months ago and has been going very well so far. No refined sugar, less salt, no dairy, no junk/fried food, no alcohol is a must. Meat I choose to gave up for moral reasons but try to reduce at least. Plant-based food is what I eat (fruits, legumes, veggies, smoothies, juices, grains, seeds). There are plenty resources online. This helped improve things by 20% 

      5. try to get good sleep. For me, the sleep quality decreased on this meds. Get quiet, dark room, try some stretching before sleep, plant-based teas/drinks for calming and easing the sleep. I also use an anti-inflammatory cream for some muscles that ache before sleep/when I wake up. This helped improve things by 20% 

    Good luck and hope my experience is helpful.

  • Posted

    Hi Panda, I had migraines so bad, I feared I'd have a stroke when I started the levo. Of course I couldn't get out of bed, so I wouldn't have known. It took me two weeks to get up the strength to get to urgent care. In addition, the anxiety was through the roof and I was supper ADD. I also had horrible gallbladder and liver pain, blew up like a balloon, and developed liver lesions in a matter of a few months. Went from a size XS to XL in a couple months with massive water retention. 

    I started on Synthroid, then tried a generic bc it had less allergenic fillers, then went to a compounded. I messed around with this horrible medication for over two years. It worsened my thyroid disease, caused horrible bone loss, I broke my foot with multiple compound fractures, was on bedrest for two months, irregular periods... Spent a year recovering from the broken foot enough to walk... Horrible autoimmune and food sensitivities...toxic, calcified liver, kidneys shut down, hair falling out, gained 50 pounds... On and on. My life went down the drain, couldn't cope bc of anxiety. 

    I was so spacey that I really couldn't tell you if the symptoms got better or worse with increased dossage. 

    So, yes, many people experience side effects from this medication worse than the disease. There are many posts on this site about this.

    There are dietary and supplement solutions that can help curb the autoimmune disease that causes hypothyroid disease. Also, many people have switched to NDTs. But even these can trigger anxiety. The anxiety can basically be triggered by any imbalance in thyroxin levels, and even by incorrect ratios. So if your T4 is in the high end and T3 in the low end, or vice verse, you can have anxiety. Since none of the prescription thyroxine match the natural ratios of T3 to T4, they can all cause anxiety. Of course hypothyroid and hyperthyroid can cause anxiety. My experience is the anxiety from meds is far worse than from the disease.

    Many  people have found that OTC bovine glandular supplements are very helpful because the bovine products are closest to human ratios. You buy these without a prescription, so you're on your own to pay for them, but worth every penny.

    Alternatively, a natural holistic approach is a lot more work and requires discipline, but well worth the health benefits. I've seen both ways, as my mother struggled with thyroid disease her entire life and went the traditional medical route. The disease progressed and she eventually had her thyroid surgically removed. I have struggled for decades with undiagnosed thyroid disease, was able to get it into remission for a blissful ten years with diet and cleansing... Later it returned with a vengeance, and I was eventually diagnosed, tried all the meds... They didn't work and made me sick, which is what my mother told me for decades. I finally retraced my past medical history, found some alternative practitioners and got some relief from the thyroid symptoms by dumping the meds and doing amino acid therapy, diet and TCM.   The amino acid therapy was as effective as the meds, without the side effects. Of course by the time I tried them, my kidneys could hardly handle the added stress. Still much better without the meds, hair is growing back much healthier and less grey, I have better energy than with the meds.

    My mother is on ThyroGold and is much better on that than she was with any of the other meds.

    I have seen some posts where people feel the levo works for them.  But do read lots of posts to get a sense of other peoples' experiences with the meds and thyroid disease. 

    • Posted

      To get off of the levothyroxine, I first used a natural bovine glandular. This seemed to work much better, but the company changed their manufacturing and formulation to include allergenic additives. I knew I'd be dead if I didn't find a better solution.

      I used high doses of essential amino acids to get off the thyroid meds.. Essential amino acids are the building blocks for all proteins, enzymes, and tissue in your body.

      In addition to iodine, tyrosine is required for thyroxin production. Tyrosine is an amino acid derived from the essential amino acid phenylalanine. The body converts phenylalanine as needed into tyrosine (and other amino acids). Then the body uses tyrosine plus iodine to make thyroxine.

      Other essential amino acids are required in production of thyroxin, as they are needed for production of enzymes and use as an enzymes required to catalyze the reaction that produces thyroxine.

      By increasing the body’s source of raw materials including tyrosine and the enzymes required to produce thyroxine, the idea is that this helps drive the chemical reaction in the body to produce more thyroxine naturally. remember, hypothyroidism is a type of starvation reaction response in the body. Give the body the necessary nutrients it needs, and the body cones out if starvation mode. Period. Give the body excess of what it craves for health and the natural chemical reactions in the body practically drive themselves.

      I chose to use a supplement containing a complex of essential amino acids. Meaning, it contains all the essential amino acids that the body cannot produce. I chose to take all of the amino acids because I figure if I’m deficient in one, it’s likely I’m deficient in all of the essential amino acids. I also figured that when we get amino acids naturally in our foods, we don’t get just one amino acid we get a whole bunch of different ones. So my goal was to try and mimic the natural delivery system of amino acids that you would get from eating food.

      I knew that going off of the medications would be extremely difficult, so after testing the amino acids in small doses on myself, I slowly amped up the dosage as I rapidly decreased my medication dosage. Actually to be honest, I was so ill from the medication that I had to quit cold turkey. This of course is undesirable, as quitting any sort of thyroid medication without tapering off, results and severe side effects.

      I found the use of essential amino acids to be extremely effective in treating my hypothyroidism is. This therapy isn’t perfect, but it treats hypothyroid disease from basic nutrients, does not interfere with the thyroid feedback loop, and does not seem to have any suppressive effects on the body's natural thyroxin production.

      I found it to be more effective than medications with fewer side effects. i eventually tapered of the amino acid use to as needed.

      Side effects from amino acid therapy seem to be limited to minor headaches. I say minor because I had severe migraines from the levothyroxine and other thyroid medications so I figured the headaches from the amino acids in high doses were actually pretty minor in comparison.

    • Posted

      Solagar is what I used, but as long as you get a blend if essential amino acids, you should be fine.

      I actually used high doses of essential amino acids plus extra phenylalanine. I got some headaches while going off, but that's typical when going off thyroid meds. I think the phenylalanine can cause headaches in high doses, but nothing compared to the migraines I've had from changing thyroid meds.

    • Posted

      what was your tsh when diagnosed hypothyroid? Mine was 50 and I looks like I have no thyroid function left. I'm wondering if the amino acids would still work in my case.

    • Posted

      Hi Danielle, my TSH was never super elevated, or maybe just didn't get tested when it was elevated. Make no mistake, I have serious thyroid disease. Most of the right lobe of my thyroid gland was basically cannibalized by a cyst. I was eventually able to reduce the size of the cyst dramatically by natural methods. It wasn't easy.

      My mother has also been through it all. So I manage her meds. She has nearly no thyroid function, as most of her thyroid gland was removed.

      I've had her on the amino acids in addition to her natural thyroxin replacement, and I notice the amino acids make a huge difference for her,

      The meds made it worse because they supress your natural production of thyroxin. Of course, while your thyroxin is low and while on the meds, you can't think straight. And there's such a delay in response to meds, its hard to tell what's what. Well, thats how it was for me.

      The amino acids don't solve everything. I'm still coping with the damage caused by the meds- frequently broken bones, massive weight gain, autoimmune disease. But the longer I'm off the meds, the better.

  • Posted

    Thank you very much everyone for the kind help. There's some good ideas here, and things I've been hoping to try out. I think taking the dosage throughout the day might be a good idea. I'd have to ask my doctor.

    I'm so sorry for the migranes you have suffered, and how harsh they were. Mine seem to be subsiding but there's nothing good happening with anxiety.

    I all ready had anxiety disorder. Come to think about it it did start around the time I started Levo. I've always thought that Levo helped to deal with symptoms like gaining weight, joint pain, etc. But what, may I ask, is the point if it just adds these symptoms itself?

    I don't mean to be... so focussed on one point because obviously good health is better than how you look. But I've recently been trying to diet and lose weight because I'm at a weight now that can't be good for my health. So stories of people going up several sizes rather scare me. It's not been easy losing weight but it's certainly doable. Is it POSSIBLE to lose weight while taking Levothyroxine? Will it just be harder to do or is it impossible? Because I can't go on the way I am. 

    • Posted

      I did try taking it half dose in the morning, half at night.

      Do a search for side effects of levo. It actually makes autoimmune disease worse. 

      I eventually got some relief from amino acid therapy, but by the time I quit the levo, I'd become so sick. I wish I'd quit taking the levo right away.

      As for weight, there are some posts here where people say they've lost weight. 

      I figured since I only gained weight on the meds, and got sicker, I'm better off without them. Well, I'm not back to myself exactly. I still feel hypo. But way less pain, a lot more energy now.

      The best part is not having to arrange my whole day around taking the meds, and not having to constantly run back for blood tests and doctor visits that get no results.

    • Posted

      Thank you :3

      I've only been on it about 8 days properly again so I'm just gonna have to wait and see how it goes I thnik. But thanks for the feedback and advice!

  • Posted

    Levo can give you anxiety. Some say its the different fillers in the different brands that mess with histamine levels. Maybe try a different brand?

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