My TSH results with Acetyl-L-carnitine, advice pls?

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I was diagnosed with graves in June 2016 and been on tapazole/methamazole for 10 months and while my T4 and T3s have been in range from the meds, my TSH stayed suppressed at <0.01 and my endo was ready to increase my meds Which I was not happy about!

I posted my dilemma here and Linda recommended that o try acetyl-l-carnitine. I started taking 500mgs 4 weeks ago and had my lab done today and my TSH went up from undetectable to 0.26!!!! It's still low but it's definitely a vast improvement and I will say the ONLY thing I've done different was to take acetyl-l-Carnitine so I'm fairly confident it helped with my TSH. Thank you so much Linda for your advice.

Now my next question is, my t4 and t3s both dropped a bit (lower end of range). I'm currently on 2.5mgs and 5mgs tapazole on alternate days. Should my next step be decreasing my dosage to maybe 2.5mgs everyday and see where it goes? I don't see my endo for another month but she gave me permission to play with my dosage if I feel unwell, and I have an extra blood lab script in case I need to get tested.

Thank you!

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  • Posted

    Hi Cecelo, I am really interested in this as I have recently been started on carbimazole (well almost 4 weeks now) and while my TSH was normal at diagnosis my 2 week bloods showed a TSH of 0.06 with normal range T4 and T3. I am still an emotional mess and my local doctor increased my carbimazole. I have not been given a diagnosis but I just sourced some acetyl l-carnitine from the internet as my local pharmacy can't seem to get it and I am hoping it will help (my doctor hadn't heard of it). I will post again in a couple of weeks when I have tried it and get my results. Good luck and best wishes Jeni

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    • Posted

      Jenifer just be careful.  No more than 500 mg, a day, watch your symptoms and get blood results monitored frequently like every 3 to 4 weeks.  Have you been tested for antibodies and do you know the cause of your hyperthyroidism?  Some people have autoimmune diseases like Graves and/or Hashimoto's and others just have thyroid nodules or goiters.  Keep us posted on your progress.

      Linda

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    • Posted

      Hi Linda, Yes the tablets I have ordered are 500mg so when they arrive it will be one a day and my levels are checked every 2 weeks. My local doctor is treating me but he hasn't done antibodies or referred me to an endocrinologist so I am a bit confused. I had thought that when my T4 fell within normal limits he would reduce my carbimazole especially as my ?pituitary seems to have finally responded by lowering my TSH to 0.06 so it isn't stimulating my thyroid. I managed to get the left side of my thyroid ultrasounded when I was having one done on a lymph gland and at least the left side is normal. I am so confused and when I am stressed (emotional is worse and that includes my work)my pulse jumps up to sit between 100 and 120bpm, I feel like my emotions are scraped raw and often find myself crying when I am alone. I thought these things would return to normal when my T4 levels dropped (17.1 almost 2 weeks ago, normal upper limit 19.1). Really hoping the acetyl l-carnitine helps because while some days I feel great I am still having days from hell too. Sorry to unload but no one but fellow sufferers seem to understand. Thanks Jeni

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    • Posted

      Just to confirm, a TSH of 0.06 indicates HYPER thyroidism and your pituitary is stimulating your thyroid when at that level..   The lower that number goes the more hyper you are.  When it goes up to 4.0 and above you are HYPOthyroid.  It is just the opposite for FT3 and FT4 values, the lower they go within a range, the better.  When those are high, you are HYPERthyroid.  I know it is confusing.  I also have the experience of stress, especially workplace stress triggering my thyroid disease. 
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    • Posted

      I thought I understood this and this is what I thought,

      My T4 was slightly raised at 19.1 (19 is upper limit) and my TSH was 1.33 (low limit 0.40) but my symptoms were over the top! 2 weeks on carbimazole had my T4 back in range but my TSH dropped to 0.06. I know a low TSH means hyperthyroidism but I thought it dropped in response to a high freeT4 via the TRH and TSH feed back system. I think I need to go back to my research because I thought I was getting better with my T4 coming into normal range but I now wonder if I only felt better because some of my stressors had been dealt with (the diagnosis in itself was the biggest relief because I was convinced I had inherited my mums bipolar disorder). I need to understand this so I can deal with it, I am a registered nurse and am kind of obsessive when it comes to understanding how things work in the body. I guess I will just wait till my next bloods on Sunday and see what is happening. I was actually tested for a thyroid problem back in 2012 (weight loss moods menopause at 45yo and paroxysmal atrial fibrillation) at that time my TSHwas 0.6 and T4 14.7 so my then GP figured as they were within normal limits despite my symptoms and left it at that makes me wonder though. Sorry that was so convoluted but today was not a good day for me and my brain feels fried. Thanks for the info and I will try to get my head around the TSH/TRH/T4 feedbback system as what you said explains my continuing symptoms. Thanks again Jeni

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    • Posted

      Hi Jennifer,

      my endo also wanted to increase my meds because of my low TSH, despite my T4 and T3 being in range. My endo was trying to medicate me based on TSH which is not the rught way to treat graves (in my case) so I took ACL to get TSH to rise without having to increase my meds, on the contrary I can now reduce my meds, which is the ultimate goal. I'd ask to get antibodies tests done for a diagnosis to confirm you have or don't have graves so this way you can get proper treatment. As Linda pointed out hyperthyroidism could be caused by many things.

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    • Posted

      When I was first diagnosed and put on Methimazole, my FT3 and FT4 immediately normalized to the mid to upper part of the range while I was on 10 mg of meds.  I stayed on that dose for 2 years.  However, during that time my TSH was less than 0.001.  I could not drop my medication dose until I added the supplements (L-Carnitine first, later acetyl-L-Carnitine, vitamin D, Magnesium and omega 3).  When I first tried the regular L-Carnitine, that was the first time my TSH rose to 0.15 and my doc lowered my dose.  However in 2 weeks my symptoms were back because she lowered the dose from 10 mg to 5 mg and that was too much.  So I took 7.5 mg until I added the other supplements and my TSH started to rise into the normal range.  When that happened, my Free T3 and T4 lowered to the bottom of the normal range.  I was more concerned with my TSH value so I didn't care if they dropped as long as they remained in range which they did.  It was quite a juggle but I think all my values have remained within range now for a few years.  The FT3 and T4 increased when I stopped the Acetyl.  My TSH initially started to drop again but rose suddenly without warning and stayed there until I had another stressful event at work.

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    • Posted

      Hi and thanks for that, I actually have a theory that for whatever reason (but hopefully it will prove to be carnitine or stress) some people have a delay between the negative feedback system of high T4 lowering our TSH. It seems my pituitary kept producing TSH despite a rising T4 but then it suddenly realised my body had too much T4 so it has dropped my TSH in response, it will be very interesting to see my blood work on Sunday to see just what is happening. I will ask my local doctor to add antibodies again but he didn't think it was necessary last time as my results were only marginally out of whack, probably why he didn't send me to an endocrinologist yet or do any uptake scans. I work with my local doctor when he does a GP clinic two days a week at the hospital where I am in charge of our nurse led clinic so I will see him on Saturday and get him to add them before I get my bloods taken on Sunday. Oh I should mention I don't seem to have a goitre or any lumps on my thyroid so my bet is on thyroiditis caused by stress, now I do have to laugh because I am committing a cardinal sin and self diagnosing without the benefit of a medical degree. Any way thanks for your reply and I will keep updating as I know more. Cheers Jeni

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    • Posted

      The low TSH value is what causes the high Free T4.  Taking meds blocks the excessive thyroid hormone, thus normalizes the T4 but in my case did nothing to address the TSH of less than 0.001 which was causing the overproduction of thyroid hormones.  The TSH of less than 0.001 was caused by the antibodies attacking the TSH receptors.  Medication controls the excessive thyroid hormone but I believe at least in my case did nothing to address the antibodies until I added the supplements.  My last blood test my antibodies were undetectable.
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  • Posted

    Hey congrats on the improvement.  Your pattern followed mine exactly. I would drop the 5 mg to 2.5 daily and continue everything else.  My pattern was my TSH rose a lot and my Frees dropped right to the bottom of the range but never fell out of range. That took a lot of adjustments though.  I am glad to see you are not taking more than 500 mg of the Acetyl.  Also pay attention to how you are feeling.  When I first posted about my success with Acetyl people on other Boards went out and took too high a dosage and never monitored or adjusted dosages and went extremely hypo extremely fast.  I did not care if my Frees fell to bottom of range as long as I felt okay and my TSH was around the 1.5 range.  There were times I did have palpitations though and also increased sounds in my ears.  All in all though it did do what I wanted which was to raise my TSH.  I was just speaking to one of the docs at work about it today.  He works with something called Acyl-Carnitine which is different from Acetyl-L-Carnitine.  I didn't know that.  Anyway, keep us posted on your progress and take care.

    Linda

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    • Posted

      Thanks Linda, I lowered my dose to now just 2.5mgs a day and see where it goes. Being hypo is one of my biggest fears while having graves. Can you also advise me at which point should I stop taking the ACL or L cartinine? How do you know when you are stable enough to stop? Thank you.
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    • Posted

      For me, watching my labs closely, monitoring how I was feeling and targeting a range for TSH at around 1.5.  I maintain the other supplements though I stopped the Acetyl.
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  • Posted

    Hi Cecelo,

    ?Well done on getting your TSH to rise.  This is exactly what happened to me when I started taking ALCartinine and my TSH is now in range.  I did reduce the Acetyl to just L Cartinine as my TSH rose to 2 on the Acetyl which is too high. It's taken me 8 months but I'm not on any medication or L-cartinine now for 4 weeks and all good so far.  I have blood tests next month and see my consultant in May and hoping for good news as feel great.

    ?I also reduced my medication from 5mg to 2.5mg as the 5mg was making me go "under" just slighly and my consultant was very happy for me to do that.  I can't advise you to change your medication but if you feel that is the best thing for you and your consultant has given you the ok, it's such a small change then it might be worth giving it a try as you could always increase it if symptoms come back.

    Good luck.

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    • Posted

      Hi it's me Cecelo,

      Can you tell me what's the difference between acetyl-l-cartinine and just L-cartinine? And at which point should I stop taking it? Once my TSH is in range? I'm just afraid once I stop the supplements my TSH will go back down and mess me up all over again.

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    • Posted

      It is quite a juggle.  My doc adjusted my meds dose and I adjusted the Acetyl dose by taking it every other day etc.  Once my values (TSH up to 2.5) and frees remained in range from bottom to mid-range, I stopped the Acetyl.  I still take a low dose of Regular L-Carnitine.  The difference is Regular L-Carnitine has a lot of Carnitine in it and a little bit of Acetyl and Acetyl has a lot of Acetyl (which crosses the blood-brain barrier) and a little bit of Carnitine in it.  So the Acetyl is more sensitive.  I wanted my TSH to be around 1.5 and my Frees to be about mid-range and that is what I aimed for with my adjustments.
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