How to phase out of Tapazole--block and replace

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Hi everyone,

My daughter has had continual success with taking Acetyl L Carnitine woer the last 6 months.  Her lab results has declared her levels to be all within range.  However, her T4 and T3 free are both hovering on the lower end of the range.  Elaine Moore suggested that the T4 should be near the upper 1/3 of the range and so would lke to try to dose accordingly.  TSH is 1.5

(0.53-4.6) with room for adjustment.  Thanks to Linda for helping her through with the dosage.  I would like to know if anyone can provide me some insight on how to reduce her tapazole further...she is currently taking 1.25mg of tapazole and 500mg Acetyl L Carnitine.  Elaine Moore suggested to either take tapazole every other day or the block and replace protocol.  I havent checked to see if her doc even know about block and replace...and would love for anyone to suggest the steps required in the process. Which is better in regards to creating the most effective way to sustaining remission.  Linda, if I can ask you if staying on 500mg Acetyl L carnitine for the time being is recommended and should we focus on eventually stopping tapazole and continuing carnitine even if she moves into remission?  Thank you everyone!

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  • Posted

    Congratulations. I am very pleased for you both. I have a question though. Do you know why we should be in the upper third with our T4? I was near the bottom and felt bad but dr wanted to keep me on 5mgs Carbimazole. I felt so bad I stopped altogether. Feel more comfortable now and starred again. 

    Sorry not to be able to answer your question. No bounty Linda will 😊

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  • Posted

    Block and replace will mean taking higher doses of tapazole and then adding thyroxine ( in some form ) It means more drugs and tapazole is not a great drug. However studies suggest that block and replace has a higher rate of long term remission.

    It's a personal choice really - you could just carefully reduce the tapazole until you got a dose your daughter was best on.

    My Irish Endo had me on 2.5mg Carbimazole twice a week and I was well and totally symptom free. However, within weeks of being forced to stop Carbimazole all the symptoms were back.

    I now take high dose l Carnitine and I am pretty much 100%. On the odd day I get a bit warm and jittery but it passes in an hour or two.

    I would advise staying on some dose of tapazole for as long as she is allowed. Remission is more likely after long term use it seems. Sure Linda will be able to advise as well - she seems to have "got the t shirts " x

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  • Posted

    Wow! I am glad she is continuing in her recovery. How is she feeling right now? So on what she is taking now, her T3 and T4 did rise slightly back within the lower end of the nromal range with the lowering of Acetyl? I am also struggling with the same issues of my T3 T4 levels being at the lower end, although I decreased my Tapazole to 2.5 mg and don't know what my values are now or if they have come up at all. I also stopped my Acetyl and am taking 1,000 mg of regular L-Carnitine for now as it does not affect the TSH rising and probably not the T3 or T4 drastically like Acetyl does, but I am having palpitations and my systolic (upper figure) blood pressure is high. My diastolic (lower figure) is well in the lower range where I want it. My pulse is not excessively high but still higher than I want it to be. Since I was feeling these palpitations when my TSH was well into the normal range as well as my T3 and T4 when I was taking the Acetyl without the regular L-Carnitine, I am wondering about heart disease and actually intend to go to Emerg this afternoon because both my Endo and regular doc are on vacation. I am 67 and heart disease runs in my family. My cousin in her 50's (who doesn't have Graves) just found out she had atrial fibrillation and she had a mild stroke so I would rather be safe than sorry. I think when I first posted, I described how well the Acetyl worked but how sensitive my values were to it. My TSH just shot up very rapidly when I started on Acetyl, and I had been unable to get it into the normal range before I took the Acetyl. I adjusted my dose and tried many variations. Initially to lower my TSH, I took 1,000 mg of Acetyl with my Tapazole every other day. On the off days I would not take Tapazole but would double my Acetyl dose and my TSH fell to .80 with my T3 and T4 okay. Then I preferred having something daily so I dropped the acetyl to 225 mg. I don't think I would want a block and replace regimen because I think the Tapazole has major side effects at higher doses. One lady has kept her values steady on Acetyl alone, taking 4,500 mg (I think that is a tad high). She said her blood pressure and pulse were well at 117/60 and normal pulse. (She perhaps is young, different for us older folks). The bottom line is once you start on the Acetyl along with the Tapazole they work together very quickly but you have to play with doses to achieve the results you want. Stopping the Acetyl or the Tapazole will certainly cause changes to your blood tests, like lowering TSH and perhaps raising the T3/T4. If you do stop the Tapazole, then you can raise the Acetyl because it won't be working together with the Tapazole and it will require a higher dose to keep blood values in range. The regular L-Carnitine has a bit of acetyl in it but not a lot and doesn't affect the tests as much but keeps the muscles well and keeps the carnitine level within the normal range. I think if you tested every Graves patient before treatment you would find we are all carnitine-deficient and Vitamin D-deficient. Sorry to ramble here. In answer to your question, I would try some of the following and monitor how she feels closely as well as with the next blood test:

    Switch to 1,000 mg of regular L-carnitine with the Tapazole dose she is on now and await the next blood test. See how that goes and post and try other things if you are not satisfied with either how she is feeling or with her blood values. Sorry for the long ramble. Hope this is helpful.

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    • Posted

      Hello Linda 

      I am very sorry to here you are having palpations and are worried about your heart. I wish you all the best at the hospital. I will be thinking of you. 

      BB

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  • Posted

    We are all a little different, so it is good to know the symptoms your daughter has on various doses of the tapazole, carnitine, etc.

    I am 66 years old, was diagnosed at 60, went off the methimazole [generic for Tapazole] in December 2012, started Cytomel in June 2013, added Levothyroxine in Sept/Oct 2013, and was taken off of those earlier this year.  I suffered a lot until I took Acetyl-L-Carnitine which helped some and Wellbutrin which helped a lot.  It also seems to have helped me to take Methyl B12 and Methyl folacin instead of the regular B12 and Folic Acid.

    The weird thing with me was that my TSH actually first went from zero to mid normal range when I DECREASED the Methimazole, and higher still when I decreased it again.  From then on, I had to decrease it a little every couple of months to avoid hypothyroid symptoms until I was off it altogether.  [Decreases were about 2.5 mg one day every week at first and more later on.]  

    Then when both my TSH and Free T3 were borderline low, I was able to start the Cytomel and the next two blood tests showed the TSH more in the middle of the normal range.  The third blood test and the first after starting the levothyroxine showed my TSH was practically zero again.  Then I had to go off the cytomel and Levothyroxine.  Starting Acetyl-L-Carnitine seemed to help both my symptoms and getting the TSH back to normal, but the Wellbutrin really made the most difference in how I felt without affecting the TSH.

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  • Posted

    What happened to me when I stayed on the same Acetyl dose and Tapazole dose was that my TSH kept rising and my T3 and T4 kept falling. I would try a brief period switching to regular L-carnitine which is not as sensitive and would keep her levels more stable for a while. This is where I am at with mine. If my TSH falls too much or my T3 and T4 rise too much, then I always have the option of adding more Tapazole and/or acetyl back. I also have the option of just taking a higher dose of acetyl alone. As you can see from the many postings, it appears to be an individual thing with all our bodies but the consensus has been that Acetyl and/or regular L-Carnitine has been very helpful to our health. I was pleased with what Acetyl does but like I said, it is very sensitive. I really want to learn more about this from the docs. There are a couple of docs at my hospital I was told about who are knowledgeable about both Acetyl and regular L-carnitine, one is an endocrinologist and one is a neurologist. My boss uses the regular L-Carnitine for the diseases he treats. It is vacation time now and difficult to get a hold of people but I plan to talk to them in future. Also other talks planned with other docs. I really want the Medical profession to research this further.
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  • Posted

    Thanks everyone!  I appreciate your feedback and expertise on this.  Linda, I'm sorry to hear that you're not at your best...hopefully things get back in order for you.  Any brightonbreeze...I believe that both T4 and T3 are t their optimum if they are hovering near the top half of the range...better energy, sleep, etc.  If you want more information, I would suggest going on Elaine Moore's site to read her articles and blog...she would be better at explaining everything.  Good luck.
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  • Posted

    Just got back from Emerg. They were very busy tonight. ECG okay, vitals okay and chest X-ray okay. They want me to do a 48 hour Holter next week. One of the nurses did tell me that it is not unusual to have palpitations if you have been on Tapazole for a long time. I have been on it for 7 years. So perhaps my palpitations are just due to regular anxiety but for now everything seems fine.
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