1. Community
  2. Diabetes and hormone problems
  3. Hyperthyroidism

Grave's disease and Carbimazole

Posted , 8 users are following.

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

25 Replies

Prev
  • patricia36232
    patricia36232 Manda2014

    Posted

    Hi I was diagnosed with overactive thyroid 15 months and on carbinmazole 10 mg

    I was tested for R/A but they then found out I had o/thyroid  there is a link to both illnesses my( mother)( gran )sister have R/A but I am lucky I suppose I have thyroid problem I have been on acetil-l -cartinine 1000 mg for 3 weeks I feel full of energy eventhough I have no effects of carbinmazole I felt tired all the time have not had blood test since March suppose to have appointment with my endo every 3 months but It usually takes 6 months to see him so hopefully it might work as I am not having R/I unless my illness gets serious I am also on 1000mg of b12

    thankyou linda for putting me on to these supplements

  • siobhanire
    siobhanire Manda2014

    Posted

    Hi Amanda,

    Yes I am on 60mg was on 40mg at Christmas and only a few weeks ago I started having pains in my knees which made me not go for my nightly stroll that I enjoy, some evenings it would travel to both my legs, it was very uncomfortable but funnily enough as you mentioned it, i hadnt thought about it for a while so its gone, I think it will dissapate for you how are you now?

  • looby52
    looby52 Manda2014

    Posted

    Thank you all for the information on the cartenine. I 'm planning to stop taking the carbimazole in a week or two when it's not so busy at work. From your advice I will carry on with the acetly -l-cartenine and see how I go, as I'm feeling quite stable at the moment. I've been told I will either be fine and the graves will not return (this happened to my sister), or it will return a) at some point or b) within 6 weeks. Feel quite nervous but thinking if the cartenine and other supplements help I've got a good chance of full recovery. Fingers crossed!

    Thank you to all of you who post, it's been so helpful and reassuring hearing about your experiences.

    • linda187
      linda187 looby52

      Posted

      I would NOT STOP taking your medication even if you take the L-Carnitine.  You need to work WITH your doctor even if you take L-Carnitine.  You decrease your meds based on your blood work results.  As your blood work improves, you will lower your meds.  You don't do it based on how you are feeling.  Your disease is very severe and you can cause yourself a lot of problems discontinuing it like you were going to.  I am sorry you got that message from this Board.
    • looby52
      looby52 linda187

      Posted

      It's ok, my consultant has told me to stop taking the carbimazole, any time in the next 6 months, my bloods are stable and I've had treatment for a year. I asked earlier if you would recommend the continuation of l-cartenine once I stop the carbimazole . Sorry if any confusion.
    • linda187
      linda187 looby52

      Posted

      Sorry, I respond to so many messages on these Boards and didn't look at the prior messages.  I think you still need to have frequent measurements of your blood work (at least once every 3 to 6 months) whether you are on Carb or not in order to adjust your doses of L-Carnitine and ensure your disease is not active.  You can't just tell by how well you are feeling.  I was feeling quite well even when my blood results were not all normal.  I think staying on a therapeutic dose (less than 3,000 or 4,000 mg) will help prevent the return of the disease and keep you feeling well.
    • looby52
      looby52 linda187

      Posted

      Thank you, will definitely keep an eye on my blood levels. Am very lucky, my gp doesn't mind how frequently I have my blood taken, so I'll probably monitor monthly initially. I'm quite anxious I catch it early if it returns. I do not want a repeat of the year I've just had!

      Thanks again.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.