Graves and Acetyl l carnite advice

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Suffering with graves and hyperthyroidism for last three years. I recently started taking acetyl l carnite 500mg daily (+25mg of carbimazole) in hopes of raising TSH to avoid upcoming operation. Recent bloods show normal range T3 and T4 (they even slightly dropped), unfortunately TSH hasn't moved from <0.02. Shall I increase acetyl l carnite to 1000mg and try to delay op or does it not work on some people? Thanks, really don't want op!

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  • Posted

    How long were you taking the Acetyl before your blood was tested?  While I credit Acetyl-L-Carnitine for helping raise my TSH immensely, I feel conflicted about recommending it to patients on the Board and only suggest it if the patient is ready to take responsibility for its usage and monitor it very closely, including monitoring their body feelings while on it.  Based on the research I did, I initially took 3,000 mg of Regular L-Carnitine which raised my TSH from less than 0.001 to 0.12 and I felt good on this with no side effects.  Then I experimented with different carnitines.  I added 1,000 mg of Acetyl L-Carnitine to my 3,000 mg of Regular Carnitine dose along with my 10 mg meds and that’s when my TSH rose to 0.70. Then I stopped the Regular and only took 1,000 mg of Acetyl while my doc lowered my meds.   However, as my TSH rose, my Free T3 and T4 dropped to bottom of range but other patients who just went on it and made no adjustments, or didn’t get more frequent testing, went very hypo very fast.  After my initial rise of TSH into the normal range, i e 0.70, my doc adjusted meds by lowering that dosage.  With the Acetyl, at times I had symptoms of being sensitive to loud noises as the Acetyl, in particular, crosses the blood-brain barrier and takes anything else you are taking with it across the blood brain barrier.  That is good for taking your meds at the same time as you take Acetyl because it gets the meds into the cell nucleus even at a low dose.  Also, it is important to take vitamin D, 1000 to 5000 IU as well.  I would postpone the surgery until you see if you can raise your TSH.  It is always good for a patient to start at a low dose of Acetyl as you did to see how it is tolerated by you.  But when your TSH is 0 you need to do something like I did with the Regular and Acetyl to start.  It  also helps to get your Total Carnitine and Free Carnitine levels measured as well as your vitamin D and Magnesium levels measured before you take all these supplements.
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    • Posted

      Hi Linda 187,

      Thank you for your reply. I've taken acetyl for 4 weeks prior to my recent test - luckily no side effects and feeling really good for the first time in a long time! I've read your posts on here and decided to start with 500mg so as not to crash my t3/4 values to quickly. I get tested every 4 weeks and know exactly what they mean. Unfortunately my endo is not interested in how I feel and only looks at my blood values, pushing for the op! I don't like the op as removing the thyroid solves my symptoms, but not my graves, which is my ultimate goal. I am trying to tackle this at the moment by other means! I am taking 1000IU Vitamin D. I am happy to do the adjusting thing as have been doing this when I was on PTU for two years. Will try and do your regime of regular and acetyl to boost start TSH (hopefully) and make adjustment to t3/4s afterwards. Will see in 4 weeks! Thank you.

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    • Posted

      Got my regular carnitine today. Would you suggest going in slowly with 1000mg or up it to 3000mg as you did to make sure to jump start my Tsh hopefully. I've already increased my acetyl to 1000mg for the last week - still feeling really good. Next blood test will be in 3 weeks. Thanks.

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    • Posted

      I started on the Regular L-Carnitine at 3,000 mg based on a research article I read.  Here's what I learned.

      Regular L-Carnitine has a lot of Carnitine and a little bit of Acetyl in it.

      Acetyl L-Carnitine has a lot of Acetyl and a little bit of Carnitine in it.

      It is the Acetyl that crosses the blood-brain barrier and takes anything else you are taking along with it, so in my case I took my meds at the same time and I think it helped them get into the cell nucleus.  I was on 10 mg of Methimazole.  I had no side effects on the Regular but I did have some with Acetyl, however, I was willing to tolerate them to achieve what I wanted which was a marked increase in TSH.

      So on taking Regular L-Carnitine alone, my TSH went from less than 0.001 to 0.12

      On Acetyl 1,000 plus the 3,000 Regular my TSH just rose significantly to 0.70.

      Each of us is unique and we need to learn what works for us.  25 mg of meds is a fairly significant dose.  I would try adding 1,000 mg of Regular and 1,000 of Acetyl and take your meds at the same time as you take your carnitines.  Then depending on your labs, you will make adjustments.  However, if your results are dramatic, have your doc suggest the dosage of meds while you work with the supplements.  Pay attention to your body symptoms.  If you have any that are not comfortable, then that is an indication to lower the dose of supplement or stop altogether.

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    • Posted

      Hi Linda,

      May I pick your brain. Just got my latest results and TSH rose from <0.01 to 0.11 with your suggested addition of acetyl. I am taking 1000mg of regular and acetyl. The expected problem is my t-values, which did drop. They are currently T3 4.5 (3.1-6.8) and T4 12.6 (12.0-22.0). Do you know if one of the carnitine affects the t-values more and reduce that one?? Endo won't adjust meds till TSH is in normal range! He is not interested at all!! So do I increase the carnitines to get TSH up risking t-values going down even further and build them back up later once meds can be adjusted. Any help would be appreciated as going the right way.

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  • Posted

    I am wondering if Cornelia should consider lowering carbimazole dose while adding/taking ALC? 25mg of carbi sounds a big dose to me that may affect the working of ALC?  Just my 2c.
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    • Posted

      In my experience it wouldn't affect the working of ALC negatively but would require quick adjustments as her TSH rises.  500 mg is really a very low dose and it takes time.  I usually would recommend starting with that dose so the patient can see how they feel on it and what, if any, side effects or other effects happen on that dose.

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    • Posted

      I suspected 25mg of carbi is fairly high, not the 500mg of ALC. My theory is this: if anti-thyroid med is taken alone to bring down T4T3, TSH won't budge and TSI would still take over TSH function. When ALC is introduced, if the high dose anti-thyroid med continues its heavy blocking on the receptors, TSI won't give up but continue to press on TSH. It could be better to reduce carbi to give TSI a break and let ALC work on lifting TSH more effeciently. But this is just my reckoning.

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    • Posted

      Didn't work that way with me.  I could not reduce my Methimazole dosage until my TSH moved up even a little.

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    • Posted

      Thought you were taking 5mg or 10mg MM then? It's a low dose. What made you not able to reduce MM until TSH moved up? Just curious.

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    • Posted

      I was taking 10 mg to start and my Endo would not drop the dose until my TSH moved up.  When it moved up to 0.12, she dropped it by 5 mg and that was too much.  I got a backlash in 2 weeks.  My new Endo always dropped the dosage by 2.5 mg
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  • Posted

    I would stop the Regular for a bit, drop your meds dose by 2.5 mg (seems small but small decreases worked better on me) and continue with the Acetyl 1,000, vit D and meds.  Pay attention to how you feel.  If you get palpitations, try to get your bloods checked.  I seemed to get that when my Frees were low, although they never dropped below bottom of range and if yours do go below bottom, then you need to stop the Acetyl, cut the dose or take only every other day.  Keep us posted.  I am happy that your TSH finally rose.
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    • Posted

      Thanks, will do. Sorry just noticed a mistake in my post in that I added 1000mg of regular for the last four weeks not the acetyl. I did increased the acetyl from 500mg to 1000mg. So it seems the regular made the difference. Should I therefore keep the regular and drop the acetyl or still carry on with acetyl and drop regular?
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    • Posted

      When I took the Regular alone my TSH only increased to 12 but when I took both and then the Acetyl only my TSH just shot right up.  The Regular acts like your meds, it blocks the excessive thyroid hormone a bit but the Acetyl is what carries the carnitine and your meds across the blood-brain barrier.  If you want your TSH to rise, stick with the Acetyl.  For now I would drop the Regular.  Later on you can use it to keep your labs steady.  But right now your want your TSH to rise more but not go over 1.5 ideally even though you still  have quite a range before it goes out of range at the hypo end.
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    • Posted

      Hi, new blood tests are in - all in normal range now!!!

      T3: 4 (3.1-6.8) dropped by .5

      T4: 12.6 (12.0-22.0) stayed same

      TSH:0.47 (0.3-5.0) up by 0.36

      Endo sent a letter to my GP stating that he disapproves of my choice and doesn't think it works. Still no support there.

      Will drop meds be 2.5 again, down to 20mg carbimazole now and carry on with 1000 a-carnitine. No side effects so far! Does that sound ok. Need TSH to go up a bit more and then keep stable with regular later on. Luckily T3/4 didn't drop much. Thanks for your advice.

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    • Posted

      Oh, good! Your numbers much improved. Yet, you got exactly the same response from your endo as mine -- they almost always put off patients effort if contrary to their practice. Your T4 is at the low end of the range which is not ideal for hyper recovery (but a swing sign on becoming hypo)... I would recommend lowering carbi to 15mg, 10mg,...  I am amazed at that you don't suffer side effects at all!

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    • Posted

      Cornelia that is great!  When I was doing this both my Frees were right at the bottom of the range and stayed there but never went out of range because I kept making frequent dosage adjustments.  Lowering Meds by 2.5 mg now is a good idea.  I think that depending on how you feel and your labs, you can probably drop it 2.5 mg now and another 2.5 mg in 1-2 weeks.  I am not surprised at how Endos are reacting to this.  My Endo, however, was shocked because I had just seen him and my TSH was at about 0.12 and would not budge and had been there for a while because I could not get the Acetyl again in Canada for another year.  Then with the two carnitines it shot right up to 0.70 and I showed him the bottle of Acetyl and he was stunned.  He then read up on Carnitine and saw research articles that showed it blocked excess thyroid hormone just like meds do.  You are doing great, pay attention to how you feel, if palpitations take a low dose of a beta blocker like Propranolol as you require and keep us posted.
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    • Posted

      P.S. Cornelia

      When you get all your labs at the levels you want them, ask your doc to do another antibody test and do not stop meds until that is done even if your labs values are good.  I predict they will fall also when you can keep your labs steady in the normal range for a long period of time.  That's what happened to me.

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    • Posted

      Nope, I haven't felt so good in a long time, even family commented on this. What I found really astonishing was, that my Endo actually tried to tell me that I wasn't allowed to do what I am doing. I challenged him saying its my body and that i can do whatever i want and he just said he doesn't support this!

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    • Posted

      Good idea about antibodies, they are not on my monthly test! Would you keep going with 1000 acetyl or drop that as well in conjunction with meds or only when you feel side effects? I am feeling really good, which I haven't in a long time!! No palpation so far. Thanks.

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    • Posted

      That's unfortunate Cornelia.  I can understand that he doesn't want to undertake what you are doing because he has not been trained in it and has no knowledge about it.  His colleagues would ostracize him if he did.  And it is difficult to set up a research project utilizing the supplements because there is no money to be made by pharmaceutical companies on it.  However, in my case, I was so fortunate because when he saw the difference in my labs, my doc at least was willing to partner with me.  He took care of meds dose adjustments and I adjusted supplements which worked out great.

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    • Posted

      They don't usually test antibodies monthly.  I do get them tested once a year or when all my values were normal and he was considering discontinuing my meds.  I just feel a little safer on even a low dose of meds 3 or 4 times a week that I have stayed on them because I have so much stress in my life, but if I were going to discontinue them, I would want to make sure my antibodies had normalized.

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    • Posted

      I stayed on the 1,000 mg dose for most of the course that I took Acetyl.  So I would think you could stay on that dose at this point unless you have negative symptoms like palpitations frequently or other side effects frequently.  As your lab values improve, ask your doc to suggest how much to lower your dosage of Carbimazole.  If he lowers too much, you don't have to follow if he suggests too drastic a cut too fast but at least he will be involved. For me 2.5 mg lowering at a time worked best as it was not too much shock for the body to take.

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    • Posted

      Great, will do. Endo won't be involved at all. He told me good luck and that he will send another appointment in six months, other tan that I don't hear from him. I'll arranged a call back from my GP, who I like and run everything past him. Otherwise I just do the 2.5 drop and go slowly. Let's hope this streak keeps up.

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    • Posted

      You will need lab tests more frequently than every 6 months to start.  In my case at the beginning my Endo saw me every 3 months and did tests and my GP would do one in between every 6 weeks.  Real important at the beginning when you are trying to get your TSH up to have more frequent testing.  You only need to test TSH, Free T3 and Free T4 with the frequent testing.  Anything else to be tested, save for your visit with Endo.
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    • Posted

      Hi Linda can you tell me can you thyroid go back to normal I phone for my the doctor and they told me my thyroid was normalso don't understand stand as my ths 25.9 t4 was 10. 5 thanks shirley

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    • Posted

      Hi Shirley

      You need to know what the cause of your thyroid dysfunction is.  Is it an autoimmune disease like Graves or Hashimoto's (some people have both of these together),  Is it thyroid nodules?  Knowing the cause if very important.  It is also important for a patient to take responsibility to manage their disease with a lot of research, support and a partnership with their doctor because their doctor is not going to know a lot about the other aspects that can help normalize values such as supplements. Managing stress is vitally important to getting your thyroid health back.   So in answer to your question, yes you can normalize your thyroid function if you do all of the above, but first and most importantly, your need to know the cause of your disease.

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