Possible remission

Posted , 3 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

What are your thoughts??

It's only been 4 months since taking meds (2 months on methimazole and 2 on PTU) and my MD thinks I'm going into possible remission. 

He is having me retake labs next week to see where my levels are and possibly take me off PTU. 

I am a little hesitant as I don't want to rebound. Currently I am on 50  mg of PTU daily. I would rather cut up the dosage or take them every other day, etc. 

Last Labs:

TSH- .81

Free T4- .67

Total T3- 99  (I've asked for a free T3 in the next round of labs)

Taking:

50 mg PTU daily,

250 mg of L-carnitine (actually stopped for a week bc I'm feeling hypo again),

vitamin D

renatal without iodine. 

Thoughts? advice?

0 likes, 15 replies

Report

15 Replies

  • Posted

    How does your MD define "remission"?

     

    Report
    • Posted

      He thinks bc my TSH is "normal" and my T4 is low ...he thinks I'm on the road to remission. My antibodies are still present but trending down (218 at the start and now at 208 from the last set of labs in Agusut) 

      Like I've stated, I would much rather be on a low low dose or taking ptu every other day than stop completely and rebound back

      Report
    • Posted

      Ok, understood. Maybe taking off (or reducing) anti-thyroid med is a good idea. But generally, how do you feel?  Back to normal life with no original symptoms or remaining side effects? As your test result shows recovery, you should check back in your daily life... see if your body can again take over controlling and maintaining healthy life rather than focusing on depending upon medicine. However, if you are still in sort of "up-and-down" situation, it's a sign of instability... continuing monitor (test) is recommended and careful altering med would be wise. BTW, I wonder why you stop carnitine instead of PTU to prevent from becoming hypo? Hope you continue to recover.

      Report
    • Posted

      yea my MD wants to stop PTU depending on what my next week labs show. I think my body is very very sensitive to acetyl L-carnitine and L carnitine bc I tend to get hypo very quickly on them and had to have my dosages adjusted several times since taking them. Im starting to feel hypo again so thats why I stopped my L carnitine dose and waiting to get my labs drawn to see what next steps would be. 

      thanks for the advice!

      Report
    • Posted

      I feel pretty good, no hyper symptoms, no up and down. even feel a bit sluggish and gained a few pounds. My endo doesn’t want to reduce my meds yet. 
      Report
    • Posted

      Thank you! I never took the Aceytl form because of reading it is way more powerful.  Guess I must be pretty sensitive to just the l-carnitine too. Have never taken it and new to Graves also.  I don’t want to go hypo!  Endo says  no problem!  
      Report
    • Posted

      Is it possible to damage your thyroid from methimazole?  My endo says no, don’t worry about it.  or can your body recover back to normal levels if you stop the drug. My endo wants to keep me on it for another month.  
      Report
  • Posted

    Hello everyone

         I have a similar question about remission.  Thought I would ask here also. Maybe posting in the wrong place?

        Diagnosed 2  1/2 months ago with mild to moderate Graves.  Been on methimazole 10-15 mg and atenolol 25 mg for 6 weeks. 

            Taking L-carnitine 1500 -2000 mg for a month.   

             Last labs:

    In only a month TSH went from 0.02 to 3.66.    (0.34- 5.6).   Is this increase in a month unusual ?   

          Free T4 went from 1.0 to 0.6

                                             (0.06 1.6)

            Free T3 went from 4.0 to 3.2

                                               (2.8-4-4)

    All are within range, even the limits of the ranges.  My endo only wants to decrease methimazole to 10 mg every other day.  I’m worried about going hypo and then having to take synthroid.  Could the l-carnitine be doing this?  (Endo says supplements don’t do anything).  I also stopped biotin and B-vitamins 4 days before tests.  

    Can I cut down or stop on my own?  I don’t have any hyper symptoms, and have even gained a few pounds and feel sluggish   

         Sorry to piggyback on previous question. New here and maybe I should copy to another place?

              

    Report
    • Posted

      acetyl or L carnitine is what can increase your TSH so u have to be careful when taking it. there is another user on here that is pretty knowledgable about how much l-carnitine to take. need to play around with dosage when u first take it. 
      Report
    • Posted

      Also confused about antibodies.  When diagnosed had TSI at 267 which is marker for Graves?  Did not get tested for this last time 

      TPO was 16.2 (0.0-9.0) and has gone up to 26.5.  Endo did not mention this.  

            

      Report
    • Posted

      I'd probably make a separate post martha. you may get more responses and thorough answers pertaining to your questions

      Report
    • Posted

      I’m doing this on my phone and can’t figure out how to get back to the main forum to post a question there.  I’ll try on my laptop and see if it is better. 
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up