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Unacceptable side effects of Levothyroxine

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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?

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  • LAHs
    LAHs Guest

    Posted

    Get off Levo and get on an NDT, a natural dessicated thyroid. You may have to change doctors (I am on my third doc - although one did retire). They will tell you that Armour is hard to get - just get the prescription and order it from the manufacturer (was Forest and is now Activis, or something like that). 

    Levo is junk. It is only T4 and you need T3 plus other things (T2, T1 and calciton). Levo will not supply these and if you are not converting the T4 (from Levo) to T3 in your periferal organs (esp Liver) then you will not feel well.

    • barbara98940
      barbara98940 LAHs

      Posted

      I agree NDT is definitely better for people with no functioning thyroid. Many people do well on Armour.  However if you have a number of allergies and intolderances you may find a problem with the 'fillers' (the other stuff they put into the tablets to make them easily absorbed etc.), in which case try WP Throid.
  • sky1
    sky1 Guest

    Posted

    the symptoms you express are the symptoms of an underactive thyroid and sometimes an over active thyroid so i wonder where do these symptoms vary from taking levo--where do they differ how can we ever get a grip with what came first the chicken or the egg?!  hopefully europe will take a strong stand on healing thyroid issues as the uk sure as hell isn't why do endos get paid 150..k and know so little and contradict each other--what happened to do no harm??? 
  • vee54777
    vee54777 Guest

    Posted

    Hi everyone,

    I was diagnosed with hypothyroid hashimotos about 2 years ago, after getting pregnant with my son. After moving up doses for months 100's were finally the dose that made me feel normal again I have felt ok for the past 7 months, about a month ago I started to feel agitated often, wasn't sleeping well & my hair was starting to fall out as well as nails peeling. I knew my thyroid was out of whack again, test shows I'm now hyperthyroid (the joys of hashimotos) my doctor suggested I started taking 88's which I did I found I had energy again for the 1st few days after that my head started to feel fuzzy, felt dizzy which I've had before when switching doses but now I have had migraines everyday & depression for almost 2 weeks so I switched back to 100's & after 2 days started to feel normal again, has anyone else had brutal headaches before from going DOWN a dose? I've never heard of this before. I'm wondering if I should be getting a cat scan or not. Any help would be much appreciated smile

  • beeTx
    beeTx Guest

    Posted

    I have been on Levothyroxine since 1998 after being DX with Graves and having RAI. I'm on 175 for 3 years now and feel ok most of the time. 

      

     I just got over a H-Pyori attack and also have gastritis. So after I take my pill first thing in the morning I will have terrible belly pain for about 30 minutes or so. I drink a glass of water with it. It is awful!! 

     Any ideas? 

    • MtViewCatherine
      MtViewCatherine beeTx

      Posted

      Hi beeTx, thanks for sharing. I also feel like the meds irritate my stomache. I sometimes take the meds with fruit. However, now that you've brought this issue up, I may start taking them with a little oil. I like borage oil or avocado oil with food. It's very light and would help coat the stomache without inhibiting the meds. You only need a small amount.

      Also, if I wake up with a horrible stomache ache, a take a mixture of a tsp each of oil and aloe Vera juice.

      Hope that helps!

    • beeTx
      beeTx MtViewCatherine

      Posted

      I'll try that. I was afriad to eat anything since it said empty stomach but the pain is awful. 

      Thanks

    • MtViewCatherine
      MtViewCatherine beeTx

      Posted

      I avoid dairy, kelp, supplements, and other things with calcium and iodine in them. These bind the thyroxin and can make it less effective. Thanks again for posing! I hadn't really connected the stomach pain with the meds!
    • MtViewCatherine
      MtViewCatherine

      Posted

      to clarify, I avoid dairy and iodine at the same time as my meds.
    • Rosiebranston
      Rosiebranston beeTx

      Posted

      It's only been recently that I've been told to take Levothyroxine an hour before breakfast, so it's obvioulsy a new idea.   I don't get stomach cramps but am suffering other siode effects and can't take more than 50 micrograms when I should be on 100.   I don't find taking it an hour before breakfast is helping me and I feel it is making the side effects worse.   I am now hoping to try an alternative brand called Watchyard but can't find any information about it.   It's trial and error all the time with this.   I just want to get back to 100 again and start to feel normal.
  • beeTx
    beeTx Guest

    Posted

    I'vebeen sick with all those things since 1998. My doctors including Endo do not addresss these but add more medications for symptoms. I will say I feel some better when I am not eating wheat or gluten, sugar or high carb processed foods.
    • barbara98940
      barbara98940 beeTx

      Posted

      Hi BeTx

      Can you eat fruit? Or does that cause you problems too?  I ask because your list of foods you can't eat is similar to mine. Look up blastocystis hominis.  There's a good research foundation for it - I can't give you the link but it's obvious when you google 'blastocystis research foundation'. Once on the site, look on the right hand side for the 'Blastocystis 'hominis'Symptoms, Treatment and Fact Sheet'. The following is an excerpt from this sheet.

      'What are the symptoms of Blastocystosis? - Blastocystis hominis infection can cause a variety of intestinal signs or symptoms, which include: Abdominal pain, Diarrhea, Constipation, Gas or flatulence, Greasy stools that tend to float (I don't get this - probably because I control it by diet), Upset stomach or nausea. Patients also report fatigue, skin rashes, and joint pain.  Some people with Blastocystis ‘hominis’infection have severe symptoms, while others have no symptoms at all.  In this class of disease, researchers have found that people with more severe symptoms may be infected with more virulent types of microbes, and also may have a genetic makeup which causes the microbe to produce more severe illness.' 

      Searching for 'diagnosis' on this site comes up with some useful information, and it is some of this which you may be interested in, specifically: 'Blastocystis patients will often list many foods which exacerbate symptoms, and removal of several foods will usually not eliminate the symptoms.

      Carbohydrate intolerance is common in Blastocystis infection, as it is with Giardia. Patients will report the inability to eat foods with high sugar or starch content, such as fruit or bread.

      Some patients are able to manage symptoms with an extensive exclusion diet, which may include exclusion of refined sugar, wheat, dairy products, rice, corn, carbonated drinks, tea, coffee, alcohol, and fruit'. Sounds a bit like your list?

  • susan_90567
    susan_90567 Guest

    Posted

    HI! I just happened on this forum. 

    I was diagnosed w/graves disease about 20 years ago. my endo had me take a radioactive capsule to, (as she said)"put my thyroid to sleep." after that she started me on Synthroid, however, my Internal Medicine doc has been following my thyroid for about past 10 years now and has me on Levo 112mcg. I have  been feeling like iam  a roller coaster , &/ or  a yoyo(sweats, chills, hair loss, weight gain, depression for past 20 years. 

    Trying to decide if I ought to go back to my endo or not?

    Suggestions? Comments?

    • MtViewCatherine
      MtViewCatherine susan_90567

      Posted

      Hi Susan, If your endo was the one who blasted you with radioactivity and detroyed your thyroid completely, I certainly wouldn't go back. The truth is that, while there is a perception that the meds are sufficient replacement for endocrine organ function, they will never work the same as the real thing. If an endo had suggested that sort of treatment for me, I'd feel like a fool going back to them.

      The yo yo and sweats, all the symptoms you've talked about can be attributed to low thyroid levels. Again, perception that synthetic thyroid replacement or even NDT thyroid replacement can work the same as your own is inaccurate. You pretty much have to be your own doctor and learn to listen to your body. You should be pretty good at this after 20 years, so feel confident in trusting yourself. This is the only way I've found to get the dosing right.

      Also keep in mind that while thyroxin prduced in the body has a very short life- 4 hours for T3 and two weeks for T4- synthetic thyroxin cannot possible function the same because it doesn't break down the same as natural does. So you have synthetic thyroxin lasting longer in the body than it's supposed to, which can also wreak havoc.

      My point is you have several variables to troubleshoot here:

      1. your own levels. By your symptoms, they are too low. So you basically need to increase your levels, which may not be in the range your doctor feels is acceptable. Unfortunately, this is a typical issue, as so many people with thyroid disease actually require higher blood levels to feel healthy. Mine work best at the top end of "normal" or just above.

      2. does the synthetic work for you at any level? I tried it for two years and it never worked right. I finally have gotten some relief with an OTC organic natural dessicated thyroid. 

      You'll have to listen to your body, and look at your blood levels, your T3 to rT3 ratios, and be your own doctor. Theh trend now is for doctors to look at computer data. It seems obvious that computer data is insufficient for treatment of any disease. It's important to consider smptoms and how the body feels as well as the blood tests.

      You can get some relief from the roller coaster symptoms by going to an acupuncturist regularly. I prefer ones trained in the orient. That is the best thing I've found to help stabilize the body while I'm trying to sort of proper dosing.

      I've been on meds since 2012 and have yet to feel like myself. Have gained 40 pounds ( went from a size 4 to a size 12), hair loss, vision problems, heart palpitations, etc.  I'm not sure you can ever get the dose right, you can just get it better.

      Lastly, if your thyroid function has been low for extended periods of time, you'll need to also deal withthe adrenal exhaustion that usually accompanies prelonged thyroid disease.

      Find an endo that will support you in what you feel will work for you. Shop around until you find a good one. Do the same for an acupuncturist.

      Hope that helps.

      Good luck! You aren't alone!

      Catherine

       

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