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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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  • cameronita
    cameronita Guest

    Posted

    Hi Carol...I am so sorry to hear all that... The best way that I have found to lose weight is to write what you put in your body each day....The goal is to eat three small meals every day...decide what snack you want but make it a healthy one. Telling yourself every day that sweets are a comfort food and you need to limit them.

    When you do not eat and starve yourself what you are actually doing is making your body starve...so it is going to retain fluid and fat because it does not know when it is going to have any more.....the best thing you can do is to eat three small healthy meals a day so your body can get on a schedule and know when it is going to recieve the foods it needs so it will not hold on to anything. I too am struggling due to my health conditions. This is how I lost weight and now it is very hard to do due to hypothyroidism and diabetes.

    You need to sort of train your body and its system.....and you need to excercise every day. I walked three miles 3 times a week and lost the weight.

    It really works but you need to stay diligent and on a schedule.....I know it is tough, I am going to a natural pathic dr. I am waiting to see him for my first visit. I had to go completely off the levothyroxine after seven months at my own urging. My doctors refused to put me on anything else.....that medicine I believe would have killed me...I could barely get out of bed and had pain and no strebgth. I could not even write in my right hand. It got that bad. So when your doctors wioll not listen to you...what do you do. I told my doctor I am going off all my meds....to me it was a life and death situation..I felt like I was being poisoned....

    I do not feel 100 percent better but I can say after 11 days I am writing without much pain and can get out of bed and do my dishes and clean my home a bit.

    I am amazed and I know it was this medice levothyroxine. The last med I went off of.....thank you and I wish you tons of luck......

    Cameron

    • MtViewCatherine
      MtViewCatherine cameronita

      Posted

      Wow, I totally understand what you're going through. One of the ways I gage my progress is by the condition of my home. When I'm feeling well, everything is very organized. When I'm not well, everything is chaos. I know the levo is horrible. But I hope you're on some sort of thyroid meds.

      Thanks for the diet tips. I really just need to get in the zone. I feel I had low thyroid my whole life and eventually figured out how to keep the weight off. I was a size 4 for ten years until my thyroid completely cut out. Even with what I'm eating now, I should be dropping weight, but it may also be that I'm still not quite up to where I'd like to be. It still hasn't even been three months since I switched to the NDT, so it's stuill building.I actually had a great swim today and stopped at the market for some healthy foods, so I'm off to a good start.

      Have a great week and goodluck with everything!

      Catherine

    • cameronita
      cameronita MtViewCatherine

      Posted

      Thank you.....Soon i see the naturalm pathic doctor and I know he will help me.....At least my diabetes is in check without meds.....I am not used to being heavier either.....but I am stating to excercise and maybe that will help in the long run.......

      Cameron

  • race
    race Guest

    Posted

    Yes I'm going to stop taking it...I can't deal with the depression anymore....apparently you die if you go in a coma hopefully that will happen to me.

     

    • labrat
      labrat race

      Posted

      I have been on thyroxine for thirty years and was the person who began this discussion on side effects. I too have experienced side effects. But depression has not been one of them. I understand your feelings and would strongly urge you to get some help with how your feeling. I hope you will soon be feeling better.
  • melissa65140
    melissa65140 Guest

    Posted

    Sounds like hypo symptoms; that you need more medicine.  I switched to tyrosint (T4) over 6 months ago and feel incredible!  It's a liquid capsule so your body absorbs it better.  I was having major problems with my dosage on the levo.  I was on way too high a dosage of levo and I had all the hyper symptoms but bc my TSH was in "normal" range no one believed me.  They wanted to put me on lexapro for anxiety.  I knew it was my medicine so I changed Drs. It took 3 months and 7 drs to figure it out (many drs only look at the lab results and not the symptoms).  While trying to figure out my new dosage, I ended up on too low a dose of levo was still having palpitations and an internal shaky feeling but was depressed so my new dr switched me to tyrosint and I felt like a different person very quickly without ever touching the lexapro! (Interestingly, my dosage of levo at this point was 75 mcg, which wasn't enough, and when they switched me to the tyrosint the same dosage was enough). Many Drs won't prescribe armour, which is what I wanted to take.  I finally found two Drs that love armour, and I still see them today, but they won't give it to me bc of the palpitations I had on the levo. Tyrosint is the next best thing, though it is expensive, it was worth it to me. Also have them test you for hashimotos, changing my diet helped too!  Just so you know how inconsistent lab results are my last 3 TSH results were this: 3.5, 6.17 and 4.0. All within a 2 month period. We base my medicine more on my symptoms than anything.  (High cholesterol can be from not having enough medicine)    Hope this helps!
    • MtViewCatherine
      MtViewCatherine melissa65140

      Posted

      Wow! Super helpful information!  I hadn't heard of tyrosint. Is that a ndt T4 only? I was told there sn't a ndt T4 only.  I'm on a compounded NDT now, and am feeling tons better since getting of the levothyroxin, but still a little wonky and I'm a little concerned about the high dosage, which still feels too low.

      Also, you mentioned the high cholesterol- when my thyroid is too low my cholesterol (usually low) goes throguh the roof! So that certainly is an indicator that should be considered.

      When the thyroid is down, there are so many othe heath problems that happen because of it, and then we're so messed up, we can't tell what to treat. It's always the thyroid.

    • melissa65140
      melissa65140 MtViewCatherine

      Posted

      Im so sorry I misspelled it earlier, it is spelled Tirosint.  I'm not sure if it is NDT but it is T4 only.  There are very few ingredients in it and is made in Switzerland, I believe.  It is also Gluten Free. I know everyone is a little different but it has worked great for me.  My new Dr always says, we don't all fit in a box.  Here is a great new website from a Pharm MD who has hashimotos herself.  I love it bc it incorporates both western medicine and natural solutions mainly combining the two.  I believe food is medicine and it is this website gives a lot of reassuring information. I could write a book on all the things levothyroxine did to my body but it would be very long winded!
    • MtViewCatherine
      MtViewCatherine melissa65140

      Posted

      Hi Melissa, Looks like the Tirsint is another levothyoxin (synthetic). Great that it's working well for you. I've tried the levo, even tried the compounded for months, but it didn't work for me and I was super sick the whole time. This website won't let you post liks so it's gone if you posted one. What is the name of the Dr. with the cool website?
    • melissa65140
      melissa65140 MtViewCatherine

      Posted

      Thyroid pharmacist is her website. She wrote a book called root cause. I haven't read the book yet. Two books that have helped me a ton are:

      Solved, The Riddle of Illness

      Why do I Still have Thyroid Symptoms? When my Lab Tests are Normal

  • clare49494
    clare49494 Guest

    Posted

    Hi there, my symptoms have returned also suffered for 20 years with acceptable blood levels but last January my system broke down and after a fasting blood test shower serve Hypothyroidism Gp put me on 50 Levothyroxine after four weeks I felt slightly better but now I'm back to feeling like death warmed up! I have done lost of reading and boy am I alarmed to find out that Gp's in the uk are ridged on TSH testing what they go by is acceptable levels but it's wrong there are so many with ill health with normal levels! My bloods came back last month as acceptable and I asked for increase of Levo to be told no.. Synthetic Thyroxine or Levo only contains T4 we need T1 T2 T3 & T4 the most important of these is T3 Armour Contains all of these! Also most of us could have Ai Adreanal condition which causes Hypothyroidism not even Armour will help if this is the case but treat the Ai and then the Hypo with Armour and there we are cured! Why in this country are they so ridged and blind..this is our health. Push to get your T3 tested and Adrenal Blood work. Hope you find this helpful I'm off to see my Gp! Best wishes to all you long suffers who needn't be suffering! X
    • MtViewCatherine
      MtViewCatherine clare49494

      Posted

      Yes! Get the naural dessicated thyroid, wheat and corn-free. Armour changed their formula a while back and it has some allergens in it. I found Naturthroid to be better, and I've heard NP is also pretty good, though I haven't tried it. After my disaster with the Levo, my doctor put me straightaway on the compounded NDT in an effort to avoid any more difficulties.

      The things that will help you most are:

      1. get the natural dessicated thyroid without allergens of any kind

      2. get yourself in to accupuncture weekly

      3. go completely gluten-free, better yet, grain-free

      4. Cleanse, especially the liver!

      5. When you are able to exercise, choose gentle activities- swimming, yoga, weights, bicycle to avoid aggrivating the arthritic stuff that goes along withthe autoimmune disease.

      6. take turmeric capsules or a combo of turneric and bromelin for the inflamation

      7. drink parsley tea- hommade- for the water retention.

      These are the things that have helped me the most.

      Thyroid disease is autoimmune so you want to limit immune system triggers. Hence eliminating gluten and grains. Change you diet to nonstarchy root vegeatables, greens and clean meat. The gluten elimination is a huge ket to thyroid health, I can't stress this enough!

       When the metabolisom slows down, the liver gets backed up with waste and causes big problems, also triggering the immune system. So I've found it to be extremely helpful to really keep up regularly with the liver cleansing. They are cheap and quick, but can be a little hard on the body. I use the liver/gallbladder cleanse with epsom salts, olive oil, apple and grapefruit juices.  I've found flaxseed oil is healthier and easier on the system than the olive oil for the cleanse.

      Well, those are the things that have helped me recover and have kept me on my feet during the thyroid challenge. Hope that helps everyone!

      Catherine

       

    • clare49494
      clare49494 MtViewCatherine

      Posted

      Thanks for thats info! It's rather clear to me now that and seems obvious! I have Coleiac disease found out a few months ago! so I'm in the process (after a depth of research done) totally changing my diet even doing it for the family! I have slipped the past few weeks and consumed mince pies and a few other naughties and I'm sure this has contributed to how I'll I feel bloating back and my headaches are so bad I vomit! The jigsaw all fits now! 
  • hev-nothyroid
    hev-nothyroid Guest

    Posted

    My symtoms are the same and I am also now on 125 which has been reduced over time from 175. I have no thyroid (removed for cancer lump) and have been on these tabs for 4 years now. My hair is so thin that I think it will be noticed soon. Frightening. Is there an alternative to these without these horrid symptoms that I can take instead. Someone must have an answer to this please.
    • MtViewCatherine
      MtViewCatherine hev-nothyroid

      Posted

      Yeah, the levothyroxin doesn't work for a lot of people- I think all it does is spike the bloodwork without actually having any biological activity in the body other than to irritate the hell out of the system. Switch to a compounded Natural Dessicated Thyroid (NDT) medication. keep it at the same dose you're at. If your doctor won't prescribe this, get one who will. You want the compounded to make sure there are no additives that will irritate your system further. Don't fall into the trap of starting with a small dose. That's even harder on the body than switching meds at the right dose, plus it takes years to get the dose back up.

      Go completely gluten-free, and get yourself a really good acupuncturist from the orient. Acupuncture schools are usually excellent if you don't have the money to pay the usual rates.

      Good luck!

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