L-carnitine and Grave's

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Hello all,

I am new to this forum. I was recently diagnosed with Grave's (TSH < 0.01, FT3 12.5 and FT4 33.1). I will be starting my medication 20 mg of carbamizole tomorrow.

I have been lurking and reading some of your posts and learned that L-carnitine could be a useful supplement.

What I am wondering is, do I take it while I am on the Carbimazole medication or would you rather you use it when you are off the medication, trying to stabilize the thyroid?

(I hope my english is ok, I live elsewhere, but could not find an internet support group in my homeland).

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  • Posted

    I found that I have to take them together. They work synergistically, that is neither of them alone worked as well as when I combined them. Also, regular L-Carnitine did not do it for me but Acetyl-L-Carnitine dramatically improved my thyroid blood test results and symptoms.
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    • Posted

      Hello Linda.

      I took acetyl-l-carnitine 1000 mg and it did raise my TSH but then i start taking 500 mg and my TSH went down (not to much) so i went back to taking 1000 mg a day.

      My question is for how long should i be on acetyl-l-carnitine? And is it something you take for the rest of your life?

      Thanks.

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    • Posted

      Acetyl -L-Carnitine is definitely NOT something you take for the rest of your life. In fact, you have to be very careful when you take it because you can go EXTREMELY hypo very quickly. This is not true with Regular L-Carnitine. You have to get frequent blood draws and your doc should make adjustments in your medication dose as your labs improve. Currently I take 500 mg of the Regular L-Carnitine on the off days that I do not take my medication dose, as I am only taking ½ a tablet 3 times a week. I stopped taking the Acetyl altogether. So as your labs improve, and your doc lowers your dose of meds, I found that slowly adjusting the meds works better than huge adjustments downward.   

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    • Posted

      Unlike my Endo expected, when my dose of Anti-thyroid drugs was lowered my TSH went UP.  I have only taken Carnitine in the Acetlyl form, and I have taken it since 2014 about 18 months after I tok my last dose of ATD. Unlike the simple l-Carnitine, the ALC [or ALCAR] can cross the blood-brain barrier.  It seems to me  that it must play an important role in maintaining proper levels of the TSH which is produced in the pituitary.  

      For me, it seemed that I was functionally hypo-thyroid despite low levels of TSH, and the ATD was making things worse.  It seemed that my autoimmune response was reacting to how I felt, and producing the Thyroid Stimulating Immunoglobins to get me out of the hole I was in.

      I feel much better now.  My thyroid levels, TSH, and auto-immune indicators are all in the normal range, and except for a single test last July, which showed my FT4 up 0.1 above the range, I have been in the range for the last 2.5 years.  That was when I was put on Wellbutrin and started taking the ALCAR, Methyl B-12 , and Methyl-folate.  The methyl vitamins help in converting T4 to T3, I think. 

      So, it was in December 2012 that I was able to go completely off the ATD, and my tests were normal, but I was having symptoms of being Hypo.  In July 2013, my PCP put me on a T3 supplement, which helped my symptoms when I built up gradually from 1/8th of the smallest pill to a whole one.  He added Levothyroxine, and my TSH dropped back to practically zero.  Then I had to go back to an Endo, who took me off the supplements to get my numbers right, even though I felt lousy.  Then it was another 6 months before I started the ALCAR, etc.

      I forgot to mention that I was also eating a Brazil nut a day for a selenium supplement, and it was when I couldn't get them for a while, that my numbers went off a bit last July.

      I hope this helps.

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    • Posted

      I know that when you Acetyl-L-Carnitine and you are also taking anti-thyroid drugs like Methimazole, that your TSH will skyrocket quickly.  That happened to me and many others on these Boards.  However, in my case I was on top of it with frequent monitoring and frequent adjustments of either the Acetyl dose or the Methimazole dosage.  Too many patients on these Boards tried it who were on the Methimazole and went really really hypo because they do not know you have to monitor frequently and adjust.  I think Acetyl is a great tool for hyperthyroid recovery, however, as I said it really requires close monitoring and adjustments.  That said, I do not think that it will act this way to make you hypo very quickly if you are not taking an antithyroid drug like Methimazole but will probably help you.  I have never totally stopped my Methimazole dose (take 2.5 mg 3 times a week) and I did have to stop the Acetyl.  I was getting cardiac symptoms while I was on it and now that my levels are in range, I do better on the Regular L-Carnitine 500 mg a day on the off days that I don't take the Methimazole.  The Selenium (brazil nuts) is great for Graves eye disease symptoms.  Vitamin D is also very important in proper thyroid functioning and most of us in North America are deficient in vitamin D especially in the winter.  

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    • Posted

      I didn't take the ALC when I was on MMI, but afterwards, partly because of what you wrote about it, and partly because I found that the symptoms of low thyroid and low carnitine were similar and the same as I was experiencing, I began taking it after getting the Endo's permission.  He said, "I don't think it will help, but it won't affect the thyroid, so you can take it if you want to."

      Elsewhere, I heard that Graves' Disease can cause a secondary Carnitine Deficiency.

      I was also told that I had a vitamin D deficiency and took prescription level vit. D for a while.  Now I just take it OTC.

       

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    • Posted

      Hi Linda, I tried normal L carnitine which did nothing so am going to try the Acetyl version will this be ok to take with carbimacole? My t4 and t3 are normal but TSH is still undetectable and think antibodies are probably up too! Thanks 😆

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    • Posted

      Acetyl-L-Carnitine was a very valuable assistance to my recovery.  However, it requires caution with its use and a lot of minding your labs and making adjustments and minding your bodily symptoms and discontinuing if symptoms are too bothersome.  I have seen a lot of people who tried it and did not monitor its use and they very quickly went very HYPO.  For example, in the beginning when I went on it, I had a TSH of less than 0.001.  Even when it rose to 0.15 with regular L-Carnitine and my Endo decreased my Methimazole from 10 mg to 5 mg, that was too much of a drop in my prescribed meds too fast.  I could tell by the way that I felt and the symptoms I was having that this was too much of a drop too fast, so after speaking to my Endo, I raised the Methimazole dosage  to 7.5 mg.  Then I had a new Endo and when he had to make adjustments in my meds because of the improvement in my lab results, he usually dropped them by 2.5 mg at a time which was better.  My FT3 and FT4 while in the normal range before I started Acetyl (they were high normal range) dropped to the bottom of the normal range after I started Acetyl and my TSH rose to 1.5 and even as high as 2.5 at times.  I also noticed as my TSH got into the normal range and I was on Acetyl that my hearing was affected becoming too sensitive to noises and I developed a rapid heartbeat again which went away when I stopped the Acetyl.  So if you are thinking of using it, I would take no more than 500 mg of Acetyl to start and get your labs done every 3-4 weeks if you can after you start it.  When you see your TSH has risen a lot, be mindful of how far your Frees drop (and they will).  You are okay as long as they stay in range but if they drop below range, you have to stop the Acetyl or switch to alternate day usage.  Using this supplement requires a lot of diligence and adjustments of meds by your doc slowly and you need to monitor and adjust your Acetyl.  I think the reason why it has worked on myself and others so quickly is that the Acetyl part carries the carnitine and your meds into the cell nucleus.  Also because it crosses the blood-brain barrier, it is also affecting the pituitary gland and the TSH receptors which give the messages to the thryoid about how much thyroid hormone to produce.  After being on it and my TSH climbing to 2.5, I discontinued its use and my doc changed my meds to alternate day dosage.  Then my TSH gradually dropped again down to 0.70 over 6 to 8 months.  All of a sudden at the next visit while I was off this supplement, my TSH climbed to 1.5 on its own.  I no longer need to take Acetyl and I only take the regular L-Carnitine on the days I do not take my Methimazole (as I am on alternate days taking this).  If you do take it, please keep us posted on this Board as to how you are doing.  
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    • Posted

      Thabks for all the info! My GP tests me every month so I should be able to keep an eye on it like that? I'm only on 5 mg of carbimazole daily at the moment and my free t3 is 6.3 t4 17 and undetectable TSH 😔

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    • Posted

      Absolutely my symptoms improved.  Actually the start of the improvement was the Methimazole but it bothered me that my TSH would not come up in 2 years.  While I found Methimazole very helpful, I would not want to be on a dosage higher than 10 mg and preferrably as low as possible.  
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    • Posted

      Definitely I take the equivalent carbimazole and any more than 5 mgs and it kills me!! Will take 2.5 mg now and drop in the ALC a couple of weeks before next bloods! I'm still feeling fatigued with achey limbs even though t4 and t3 in range 😩

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    • Posted

      It was the Methimazole, not the ALC, that was killing me.  I don't understand why you would want to go off the ALC without trying to go off the Methymazole first.  I take the ALC without the Methimazole and I feel great and my TSH stays in the normal range.

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    • Posted

      Eh? Haha not even tried the ALC what are your suggestions? I want to be off the anti thyroid as soon as poss! They had to fight with me to take them in the first place 😂

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    • Posted

      Hi Linda,

      I have been on ptu for a month since oct /16 and then my endo switched to tapazole 10 mg then now 15mg. I noticed my values have been coming down since Oct /16 tsh <0.01, free t4 -29.4pmol/l, free t3- 20.5, Jan/17 tsh< 0.01 free t4 -16.5 pmol/l free t3- 8.1pmol/l and just last week feb/17 they are tsh<0.01 free t4 -10.7 pmol/l free t3 -5.3pmol/l. 

      Myy endo booked an appt for I131 iodine therapy for March 1st but I cancelled it due to the fact that I felt rushed into killing my thyroid. I can see that my values are going down and was concerned that I might go hypo before the tsh rises. I am going to reduce my tapazole tonight to 10mg and start carnitine. My question is I was wondering what you would suggest  for a dosage and type of carnitine ( acetyl-l or just L) as I will purchase some form of it today. I am also on vitamin D2 50,000 once a week and a beta blocker which I will continue on. I do get my values done every 4 weeks so I can monitor things with my GP. He is better than my endo. I really appreciate all the insight you have given me as I am sure the other members do too. I too live in Canada and I can see that most of the doctor's that I have dealt with want me to remove my thyroid either by radiation or surgery so this knowledge is a welcome surprise, Thank yousmile

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    • Posted

      When you lower your dose of meds, your Ft3 and T4 will rise a bit.  If you take the Carnitines, especially Acetyl-L-Carnitine your Frees are going to fall but your TSH will rise.  My Frees fell rigtht to the bottom of the normal range.  So it is a very fine balancing act.  As your TSH rises, your medication dose needs to be lowered.  This is a very fine balancing act.  I let my doc adjust my meds and I adjusted my supplements.  He lowered by 2.5 mg at a time. I started on the Regular L-Carnitine, based on the research paper I read.  I started on the recommended dosage of 3,000 mg.  My FT3 and FT4 had been fine in the mid to upper part of the normal range when I started on 10 mg of Tapazole but my TSH would not move.  So I then tried Acetyl-L-Carnitine at 1,000 mg and my TSH just shot right up.  At times I took both types of Carnitines and finally just the Acetyl.  As my TSH rose, my Frees fell to the bottom of the range and then my Tapazole was lowered to 2.5 mg daily.  I had to stop the Acetyl altogether.  Your labs are going to be extremely sensitive to it whereas the Regular L-Carnitine will cause some improvements and you will feel better on it.  Each person's case is unique depending on where their labs are at.  In your case, if it were me, I would take 500 mg of Acetyl-L-Carnitine and see what happens.  If you see a dramatic change in values, your should lower your dosage of Meds. Some people have gone very hypo even in 4 week monitoring and 3 weekly monitoring is better if you are on Acetyl.  If you are on the Regular L-Carnitine, you don't need this very close, frequent monitoring.   Please keep us posted.

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    • Posted

      Sorry to butt in it's me again haha! Are there any side effects to the ALC? I.e. Raised heart rate etc? I am on the waiting list for an op so don't want to rock the boat too much and have a pre med in two weeks. Are there any other benefits to ALC?

      😃

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    • Posted

      I did at times have raised heart rates with the ALC but not the Regular L-Carnitine.  I mostly was seeking something that would raise my TSH and it did do that.  The Regular also raised my TSH but only a little whereas the ALC shot it right up very very quickly.  If you are concerned about heart rate for an upcoming surgery, the Regular L-Carnitine would be better.  The recommended dosage for Regular with hyperthyroid patients according to the research papers is 3,000 to 4,000 mg daily.  For ALC, I would never go over 1,000 mg and 500 mg is preferrable.
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    • Posted

      While i made the decision to take Acetyl by myself, I showed him the bottle right away after it raised my TSH from 0.12 to 0.70 so he could see what did it.  He was shocked.  Docs do not know about the benefit of the carnitines so I took responsibility for adjusting that and he adjusted my meds as my labs improved.
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    • Posted

      Hello fern12,

      I would like to know do we need to ask or tell our endo about acetyle l cartinine..??

      Also i am just med since 1 month and my free t3 ane free t4 are in normal range..But my tsh is still < 0.01??

      what are your suggestions guys ...pLease let me know..

      Thank you so much..Waiting for the reply

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    • Posted

      Hi Jeu, I didn't ask but it's up to you. My endo is absolutely rubbish and doesn't care at all as long as my levels are in range so I just do what I like. It would be better to have them on board though x

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    • Posted

      My situation was a little different, because I had already gone into remission by the time I started the ALC.

      My Endo first understood what I meant by "brain fog" when I saw him a day or two after falling on my face in the street due to being so foggy headed that I didn't know why I fell. He lowered my dose of MMI [the anti-thyroid drug I was on.] He warned, "but it might make you Hyper again." If I remember right, my T4 and T3 were in the normal range, but the TSH was still very low. When I went for my next blood test, I felt so good I thought I was Hyper again. On the contrary, my TSH had also risen into the normal range. He lowered my MMI dose again with the same warning. After the next blood test he called to tell me to decrease my dose right away. When he would no longer want me to lower my dose, I did it anyway. He was lowering my dose in very smal increments, like 1/2 pill per week, so I did it the same way, but I maintained the same amount and didn't lower it again for the 4 weeks prior to the next test. When I saw him again I informed him honestly what I had done. My labs were always in range, so he never complained. When I was on the last stretch, I simply stopped taking it at all--between the lab test and my appointment.  I told him what I had done and he agreed that I did the right thing.

      That is when I started being in remission. I was in the normal range for about 5-6 months, but feeling awful. My FT3 was in range but very low and almost to the bottom. My endo was happy and would not prescribe a thyroid suppliment. I finally went out of state for a second opinion. The new endo's opinion was much the same, but she told me I had both kinds of antibodies--stimulating ones and destroying ones. My levels were still in range. I went to my appointment at the prior endo, but he absolutely refused to see me "because I went somewhere else for a second opinion."

      The other endo gave me a letter about my lab results and requesting my regular doctor to run those labs every couple of months and send her the results. So I wouldn't have to travel so far to see her unless my results were out of range again. My PCP saw me, read the letter, found out the local endo had refused to continue seeing me, and this PHP agreed to treat me with cytomel [my choice.] He didn't run new labs right away, but when he did, they were normal.  I had started with 1/2 tablet, but my pulse skyrocketted, so I waited a couple of days and tried a quarter pill. Eventually, I went to an eighth, and increased from there as needed. I usually felt good with that, but after about 5 months of that, I thought he should add a small dose of Levothyroxine, which he did. My TSH dropped to zero again and my PCP had to send me to another endo, who made me stop both supplements.

      It was another 5-7 months of misery for me when my PCP prescribed Wellbutrin which affected me just as good as the Cytomel, if not better. That is also the same time I added the ALC with the endo's consent. He said, "I don't think it will help, but it won't hurt, either." I also started takin Methyl B12 and Methylfolate which I believe help with T4 to T3 conversion. And I also tried to eat a Brasil nut per day for selenium.

      That was in the summer of 2014, and I have felt fairly well with the labs in the normal range nearly all of the time since. The one exception was when I didn't take the methyl vitamins for a short time and my T4 rose just above the range. The current endo had me redo the test after a few weeks, which showed everything in range again, and no sign of the antibodies.

      I have really been feeling good ever since.

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    • Posted

      Hi

      I've been reading your posts and having some heart palpitations all through the day. I had blood work done and TSH appears to be in normal range. I'm not feeling normal. Wondering if l carnitine will help or hinder this ?

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    • Posted

      I get palpitations occasionally usually when under a lot of stress. I was given Propranolol to take when I was first diagnosed and didn't need it once i was put on the Tapazole.  However, i will take 1/2 a 10 mg Propranolol tablet if I get the palpitations now.and it works for me.

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    • Posted

      Hi Linda,

      I read about your success story and happy for you. Currently my wife suffers from Hyperthyroid. My question to you is - Can we stop  Acetyl-L-Carnitine once our lab results are in range? 

      Thanks

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    • Posted

      About stopping Acetyl - in my case I did that when I got my TSH where I wanted it. (anywhere from .80 to 2.0, I usually am happiest when it is between 1.0 and 1.5)  While my Endo was careful to lower my Methimazole dosage gradually, I had to do a lot of adjusting with Acetyl, including stopping it for periods of time and starting it again if my TSH fell lower than I wanted it.  I have managed to keep all my labs in range that way but it did require a lot of stopping, starting, lowering dosage etc.  Currently I don't take Acetyl, occasionally have taken Regular L-Carnitine on the off days I don't take Methimazole but my TSH has remained in the 1's range, i.e. 1.5 etc and my Free T3 and Free T4 usually remain in range no matter whether my TSH is 0.50 or 1.5.  So in answer to your question, yes stop it when your labs are in range where you want them.  Start it only again if your TSH especially falls to 0.50 or below.  If you don't stop it, you run the risk of going very hypo, very fast.  Though I love how well Acetyl helps raise TSH, I must say of all the supplements I took, that one needs the most monitoring and adjusting but I am forever glad I found it.

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    • Posted

      Though I have stopped Acetyl, and Regular L-Carnitine,  I am reluctant to stop my 2.5 mg of Methimazole 3 times a week.  I will add or remove supplements like Regular L-Carnitine or Acetyl but on that low a dose of Methimazole, my labs are usually okay.  This low a dosage usually doesn't cause problems with side effects or excessive lowering of Free T3 and T4 and I just feel more secure with doing this.

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    • Posted

      Hi Linda, I am not sure I got it from your post: "If you don't stop it, you run the risk of going very hypo, very fast." Are you talking about stopping ALC/LC or ATM? From my experience, after I regained TSH back to normal (and T4 T3 in range), I didn't stop taking ALC till now for about 5 months and I am still euthyroid, no sign of hypo.

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    • Posted

      It's just ALC and there isn't a problem with hypo unless ALC is combined with Carbimazole or Methimazole.  It's the combination of the two that causes the TSH to rise rapidly.  When this happens, adjustments need to be made in dosage of both ALC and Meds.  After I shared my experience with it, many patients took ALC with their drug and did not get frequent labs and when labs changed dramatically, did not make adjustments in ALC dosage or usage or adjust their medication dosage downward.  ALC alone won't do it.  Regular L-Carnitine combined with the meds raises the TSH a little but not much and you don't run the risk of hypo with it as much as you do with ALC plus meds.

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    • Posted

      Not in my case. I continued taking both ALC and MM. Only found it's MM that could force patients into hypo after T4 T3 back into range. It happened to me and I only needed to cut a little MM, but kept ALC... afterward all is normal. However, I do suspect (long-time or not) taking ALC may cause other side effects (not GD- related). Would appreciate related info shared.

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    • Posted

      I am not sure what you mean by related info shared.  My T4 T3 were in range immediately after taking my initial prescribed dose of 10 mg of MM and stayed there for 2 years while I was on that dose.  But my TSH was less than 0.001.  When I added ALC especially while my TSH was rising, my T3 T4 dropped to bottom of range.  Required a lot of adjustments to both MM and Acetyl dosages to get what I wanted which was TSH where I wanted it and T3 T4 in mid range.  Once TSH is rising, changes need to be made to MM dose or yes staying on the same dose will cause hypo.  But as long as TSH remains at 0, in my case, the original dosage did not cause my T3 T4 to go hypo.
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    • Posted

      In my case, it was the methimazole [MMI] that needed to be decreased, and my TSH did not rise to the normal level until it was decreased--completely contrary to what the Endocrinologist said. I must say, however, that I did not know about ALC at that time.  I only started using it after I was completely off the MMI and was Eu-thyroid.  I still use the ALC, which I believe helps my TSH stay up in the normal zone. It has been normal for several years now.
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    • Posted

      I created this account just to share my story and confirm that taking Acetyl-L-Carnitine helped me rapidly increase my TSH levels. I had liver damage from Methimazole (toxic hepatitis) and had to find a solution to rapidly reduce the dose or else I had to have a surgery/radioactive treatment. I researched on the Internet and with the help of Glutathione and Silibinin( for the liver ) , and Methimazole (5mg) with Acetyl-L-Carnitine in 3 weeks I reduced the level of transaminases and increased my TSH from 0.04 to 2.53. This allowed me to reduce the Methimazole dose to 2.5 mg per day, which helped me restore normal liver function. The doses were set up with the help of a gastroenterologist ( for the liver) and endocrinologist. The doctors were skeptical, but ok with me taking the pills because they couldn't hurt my liver. So, in case someone has the same problem as I had, I would recommend this treatment that saved me from almost certain surgery.

      Thank you @linda187 for your messages. I still don't understand why 3 endocrinologists did not know about this, but it helped me so I'm hoping it will also help other people.

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    • Posted

      So glad it helped you in your recovery. There was only one researcher who was doing research with Regular L-Carnitine and getting positive results. It seems Regular L-Carnitine works better with those with Hashimoto's and Acetyl-L-Carnitine is better for those with Graves because it crosses the blood-brain barrier. This was not something I saw in research articles though and you really have to know what you are doing if you take it, that is because it works quickly, you need to know your lab tests always and when and how much to adjust it downward as your TSH rises. Otherise, you will just go hypo. Currently I am off all meds and carnitines and so far my labs have remained well in the normal range.

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