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Grave's disease and Carbimazole

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Manda2014
Manda2014

Hi, I was diagnosed with Grave's in December and commenced on 40 mg of Carbimazole which has gradually been reduced down to 5 mg.  Five months into this treatment I started with joint pains in my knees which now has begun to move around almost all of my joints. Anyone else had this problem whilst taking Carbimazole, am having my thyroid levels checked regularly and they are fine?

1 like, 25 replies

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  • linda187
    linda187 Manda2014

    Posted

    I had joint pain before I got Graves.  It sounds like some kind of arthritis - could be Rheumatoid arthritis or osteoarthritis.  I got it first when I had an autoimmune reaction to a bee sting in my 30's and then not until my mid-50's did the joint pain return.  I would strongly urge you to see a rheumatologist about this.
  • linda187
    linda187 Manda2014

    Posted

    By the way, I just read an article by a naturopath that stated that a large percentage of Graves patients are vitamin D deficient and this causes a lot of autoimmune problems.  When I was diagnosed with Graves I was vitamin D deficient and carnitine deficient.  Doesn't hurt to add these to your treatment protocol.
    • Manda2014
      Manda2014 linda187

      Posted

      Hi Linda, I think it's definitely the Carbimazole, my GP has done all blood tests and there is nothing to indicate RA or any inflammation.  Think I may need to go down the supplements route.  Thanks.
  • acd
    acd Manda2014

    Posted

    Hi Amanda

    I think one of the side effects from Carbimazole is joint pain, I'm pretty sure it is listed on the leaflet that comes with the pills. 

    I had issues with joint pain when taking PTU a few years ago, some days I could not walk my knee was so swollen. 

    I have read somewhere that sometimes taking anti thyroid medication can trigger arthritis but it is unlikely you will get an endo to agree with this in my experience.

    I was diagnosed with rheumatoid arthritis last year after leaving my Graves disease untreated for a few years, I will never know if that was why it started but I'm stuck with it now.  

    Graves is a complex disease and I'm not convinced the so called experts really understand it so I always recommend researching as much as you can so that you can gain a better understanding of what is going on in your body.

    Hope you feel better soon

    Ann

  • linda187
    linda187 Manda2014

    Posted

    I have read in a book called The Road Back that Rheumatoid arthritis can be treated by antibiotics.  This doctor believed Rheumatoid arthritis was causd by a mycoplasma in the body and had a lot of success with treating his patients with the antibiotic Minocycline.  I take Arthrotec, an old drug for treatment of my arthritis and it helps a lot.  I also take Omega 3 and Curcumin.  What helped my Graves a lot was L-carnitine and as I stated before, blood tests showed I was Carnitine deficient and vitamin D deficient, as are most Graves patients.
    • acd
      acd linda187

      Posted

      I've heard about RA being treated with antibiotics too.  I'm working with a nutritional therapist who is trained in functional medcine (only because I was not able to find a naturopath in my area) but she thinks that this would only work if the RA was originally triggered by an infection.  I've had many tests done which don't show that I have any infection in the gut so she feels it would not help in my case.  I'm not sure but would be happy to try anything!
    • linda187
      linda187 acd

      Posted

      RA is an autoimmune disease.  I think we have bacteria all around us all the time but our immune system if it is working protects us.  In RA, our immune system is not working to protect us from the bcteria mycoplasma.  Google the word "mycoplasma" and look at its definition. It is a type of bacteria that is present in RA.
  • linnet2012
    linnet2012 Manda2014

    Posted

    It's the Car Amanda. Joint pain is a common side effect. Given that you are down to 5 mg you should try the supplement L Carnitine. It might let you reduce or discontinue Carb and will also reduce the joint pain. Take 2000-4000mg and 1000 mg fish oil ( joint pain) Hope this helps.
    • Manda2014
      Manda2014 linnet2012

      Posted

      Hi and thanks I've been wondering if there was some kind of supplement that might be of help.  I wil be looking into this, 
  • linda187
    linda187 Manda2014

    Posted

    I know for myself that adding the L-Carnitine definitely made me feel more normal and I was able to decrease my Methimazole.  I was not able to decrease it until I added the L-carnitine.  I think it will help with the side effect you are experiencing.  If you do try this, please keep us posted on how you are feeling.
  • looby52
    looby52 Manda2014

    Posted

    Hi, I'd be grateful for advice. I've just been told I can stop taking carbimazole now as it's been a year since starting treatment. I'm on 5mg carbimazole. Had aching knees etc, but definitely better since taking acetyl -l-cartenine after reading posts on here. Also I was vit d deficient! So I take vit d and fish oils. Just want to know if I should continue taking the cartenine once I stop the carbimazole - and if so, for how long? Been so useful reading all yours posts!
    • linda187
      linda187 looby52

      Posted

      Wow. That's great news.  Thanks for keeping us posted.  I would suggest getting a copy of your latest thyroid labs as well as asking your doc to check for thyroid antibodies.  Also check for your blood Free carnitine level.  Having this information will help you to make a decision as to whether to stop it or not.  For myself, I switched from the Acetyl-L-carnitine to the regular L-carnitine now.  I think a low dose of 500 to 1,000 mg of regular L-carnitine is helpful to my body.  I always take the vitamin D supplements and some form of Omega 3.  How long did you take the Acetyl-L-carnitine and at what dose?  Do you have lab results of your thyroid blood tests before and after starting the Acetyl-L-carnitine?  I am interested as I am gathering testimonials from Graves patients who have tried the carnitines if you wouldn't mind sharing this with others.  Thanks again for your post.
    • looby52
      looby52 linda187

      Posted

      Thank you linda!

      I can give you my results if that's helpful to you. When I was diagnosed with graves in july 2013 my thyroid antibodies were in excess of 600, T4 was over 60, TSH 0.02. I commenced carbimazole 40mg and was on a block and replace regime which made me artificially hypothyroid. After struggling to get the right dose of thyroxine and feeling very emotionally depressed, also my white cell count and neutrophils were persistently low, I switched to a lower dose of carbimazole only and started taking acetyle l cartenine 500mg initially in march 2014, then increased to 1000mg beginning of may.

      My blood results have been very stable since march, T4 14.1, T3 4.1 and TSH 2.4. My white cell count and neutrophil levels are also back within normal levels. I have not had my free cartenine level measured so I have no idea about whether to continue. In your experience, would it be harmful to continue regardless?

    • linda187
      linda187 looby52

      Posted

      A dose of 500 mg to 1,000 mg is not harmful to continue.  Actually the Acetyl-L-Carnitine is recommended to take up to 2,000 mg per day and the regular L-Carnitine is considered safe in doses of up to 3,000 mg per day.  Some people have taken 4,500 mg daily of Acetyl-L-Carnitine and stopped their carbimazole.  With me, if I stop the Carnitine, my blood levels do not remain normal and therefore I feel there is a chance of relapse so I would recommend taking either Carnitine at least in a dose of 500 mg.  if you do this, when the carbimazole is discontinued at least for a couple of more times, keep getting your blood checked.  Also ask your doc to check your antibodies again to see if they have disappeared.  Mine have.
  • linnet2012
    linnet2012 Manda2014

    Posted

    Hi I agree with Linda. Perfectly safe to take Carnitine - in either form after discontinuing Carb. As far as I can tell it works by slightly lowering the T3 but it's main effect is on the receptors. In other words does not radically change the gland's output but prevents the organ receptors taking in an excess. Similar to what a beta blocker does. So your blood can show raised levels without any symptoms being present. The L Carnitine has a stronger effect on the heart and muscle receptors and the acetyl quicker in effect on the brain. However both work in a similar way. My biggest issues are heart symptoms, overheating and muscle problems and I find the L Carnitine best. I have tried both and different doses. The stuff I take now comes in 150mg capsules and I take 3 daily. 2 a day leaves me hotter and with occasional palpitations/arrhythmia. Takes 36 hours without it for symptoms to kick in and about a week to become fully stable again. I Am consistently well for the first time in almost 4 years so it has been a godsend for me. Sad part is I read about it when first diagnosed but my Endo said it was a waste of time and I believed him !!!
    • linda187
      linda187 linnet2012

      Posted

      Wow. Thanks for sharing your experience.  I have only recently had cardiac symptoms of stronger and faster heartbeat when I take the Acetyl-L-Carnitine and have switched to the Regular L-carnitine for this reason.  I didn't always have this.  I think once your levels come up that's when it works this way.  But I am happy on 500 to 1,000 mg of regular L-Carnitine with no untoward symptoms.
    • linda187
      linda187 linnet2012

      Posted

      About the last part of your note, i.e. what your Endo said, it makes me sad and that is why I want to get the word out to as many Graves patients as I can.  I have contacted the Thyroid foundation of Canada and am submitting my story to their newsletter in order to reach more Graves patients.  I also would like to see more research done and published on it and somehow convince the docs that this is a valid research study and new form of treatment that should be incorporated in the treatment of Graves patients.
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