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Rai

Posted , 4 users are following.

sue15
sue15

Hi guys seen my specialist mr andrew Johnson I'm on 40mg carbimazole my last blood test was nr normal he wants me to have rai iodine but I'm abit nervous about it just reading side affects what worries me more is in case I get sore or painful throat and my age 60 anyone had this treatment your answers be welcome smile

0 likes, 13 replies

13 Replies

  • linda187
    linda187 sue15

    Posted

    I would add the Carnitine to my Carbimazole before I ever considered RAI.  Even 500 to 1,000 mg would help a lot and would probably result in your having to decrease the amount of Carbimazole you have to take.
    • sue15
      sue15 linda187

      Posted

      hi linda went to my health shop and enquired about  Carnitine but they recomended it wouldent help and to stick to my meds.
  • kim19435
    kim19435 sue15

    Posted

    Hi I also saw mr johnson he is very good I was on carb for 18 months 40mg, he said that with rai iodine there is a chance I could have reoccurring issues so I had a full thyroidectomy in feb. I had sore throats a few times and stopped the carb had a blood test and all was ok.
    • sue15
      sue15 kim19435

      Posted

      hi kim  thanks for the info  how big is the scar i suffer from hypertention and worried about a opp .
    • kim19435
      kim19435 sue15

      Posted

      Hi sue15, the scar is tiny about 2 inches long and as thin as a pencil lineit didnt even look like i had anything done,and I was petrified about having the op. But it took 2 hours I was tired but felt ok and went home 24 hours after op. I had 3 weeks off work and now im fine . My surgeon was Mr Morgan and his team they were great. smile
    • sue15
      sue15 kim19435

      Posted

      thks kim i may have to consider that thanks again smile
  • linda187
    linda187 sue15

    Posted

    If you are googling RAI and thyroid, there is one article called "Stop the Thyroid Madness" where people who have undergone RAI for thyroid issues have posted their experiences.  There are also other sites of patients testimonials posted on this site.  I am sure you can easily Google it and find it.
  • linda187
    linda187 sue15

    Posted

    Do your research Sue.  There are a lot of people on this site whom it helped.  Google patient testimonials for that.  Once you have RAI or surgery, you cannot reverse that if you don't like the effects you are experiencing.  Also it isn't addressing what caused your thyroid problem in the first place.  To clarify, most people don't take L-Carnitine INSTEAD of carbimazole, they take it together.
  • acoffin
    acoffin sue15

    Posted

    Hi Sue,

    My daughter was diagosed with Graves 4 years ago...long story short, her doc was insisting for us to choose RAI soon, and after reading Linda's (and others') posts and also researched  (peer reviewed research), we decided to give Acetyl L -Carnitine a try.  Her first lab test came back with numbers moving towards the range (first time in a long time), and by the second lab...my daughter is now in the range and feeling better than ever before.  While the meds did control some of the symptoms (heart rate), it couldn't eliviate other symptoms such as heat intolerance, lost of hair, depression, horrible sleep, anxiety and shaky hands.  She is now without symptoms and for the first time in 4 years, she is looking forward to the heat of the summer.  It took us 4 years to get to here...All the best.

    • sue15
      sue15 acoffin

      Posted

      Thank you I will sure give  acetyl l carnitine a try  I feel  like I'm being pushed in to rai treatment but don't want it really  .
    • linda187
      linda187 sue15

      Posted

      You can always say to your doc that you would prefer to postpone RAI until you have had a chance to give all other methods a try.  They usally are accepting of this.  If you do add the Acetyl-L-Carnitine, you will have to work closely with him to gradually reduce your Carbmazole as your results improve. It will require frequent blood work to monitor and decrease the Carb as you improve.   If he sees the improvement in your results, and you begin to feel better, he should not be pushing you for RAI. 
  • acoffin
    acoffin sue15

    Posted

    ...I neglected adding that we added acetyl L-carnitine while we decreased the meds.  
    • linda187
      linda187 acoffin

      Posted

      I feel like I really want to do something to educate people about becoming empowered patients and about L-carnitine and Graves.  I said to my doctor Medications and RAI/surgery may be accepted standard of care for doctors but patients on these therapies alone don't feel well.  He said "I know".  I said you docs all follow the herd and he said "Yes" we don't like to step out.  I am stymied that the research that was done in Italy was not built upon.  The company who manufactures L-carnitine sold by prescription said L-Carnitine was manufactured and sold originally to treat people who had primary carnitine deficiency and carnitine deficiency due to inborn errors of metabolism.  The use of L-carnitine for hyperthyroidism and other muscle disorders is an off-label use of the product. Many drugs are used off label for something else.  Docs are allowed to do that.  But that they are not interested in learning about it is so irritating.  They will get paid no matter what so they feel what's the use.  I would like to write about this issue as well as the issue of patients becoming educated and empowered to take the best care of themselves.  If anyone on this Board has had a positive or negative experience adding L-Carnitine or Acetyl-L-Carnitine to their treatment protocol, I would love to hear from them.  Thanks.
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