Improvement in Graves Disease recovery by using L-Carnitine?

Hi Queendy

I always took my 10 mg dose of methimazole (the one I started on once a day) along with my other meds for hypertension and arthritis.  I experimented with the carnitines starting on the Regular L-Carnitine at 3,000 mg per day.  This was because of a research article I read.  If you have muscle weakness, it wouldn't hurt to take some of this as well as Acetyl.   The Regular L-Carnitine  raised my TSH only a little from less than 0.001 to 0.12.  However, when I experimented and tried Acetyl-L-Carnitine, my TSH just shot right up.  I took Acetyl as a capsule, didn't matter on an empty stomach or full one (I just took it when it was meds taking time for my other pills).  I also took Vitamin D because a research study I was in showed that my vitamin D level was deficient.  I think most hyper patients are deficient in D and it is important for good thyroid functioning.  So I would take the Acetyl-L-Carnitine, 500 mg with one of your 5 mg dosages of meds.  The Acetyl part works to get the meds into the cell nucleus as far as I know.  If you feel better splitting the dose of Methimazole, then do so.  I caution you that your results are going to change very quickly so you need frequent blood work (I see you are getting that) but you are also going to need to adjust meds and supplements based on your results.  I found for myself, my second Endo always adjusted by small decreases, i.e. 2.5 mg at a time.  My first Endo dropped me from 10 to 5 mg and I had a rebound effect of symptoms 2 weeks after that.  So 2.5 mg downward (let your doc advise on this) and if you find your TSH goes to 2.5, then definitely adjust downward, either to 225 mg capsules of Acetyl or every other day dosage.  Keep a steady dose of vitamin D and Magnesium.  Selenium is good.  Placing cotton pads soaked in witch hazel over the eyes is also helpful for eye symptoms.  If you take the supplements along with the dosage where you are taking Acetyl, it will help get them all into the cell nucleus.  You might find after using Acetyl that your Free T3 and Free T4 fall to bottom of range.  As long as they are in range, that is okay but if they fall out of the bottom of the range, then stop the Acetyl for a while until your next blood draw.  With me, my TSH went from 0.12 to 0.70, and then all the way up to 2.75.  While I was on the Acetyl, my T3 and T4 were right at the bottom of the normal range and stayed there thankfully. When my TSH was consistently where I wanted it, I then stopped the Acetyl.  What usually happens when you do this is your TSH falls again but this time it fell slightly every other month finally ending up at 0.70 after 6 months discontinuation of the Acetyl, before it started to rise again on its own.  It is a real fine juggling game with Acetyl but it was the major changer in my results.  If you use it cautiously and take supplements you need along with meds and Acetyl, your eye symptoms should improve, especially if your antibodies lower.  Please keep in touch with us and let us know how you are making out with regard to your symptoms and your lab test results.

 

Hi Linda,

Thank you so much for all your great advice, this adds lots of benefit on top of seeing my endo, it would shorten my recovery process, I’ve only been diagnosed about 3 weeks, I can see the light at the end of the tunnel.  

I wonder if I should increase ALCAR to 500mg twice daily.

It seems Acetyl-L-Carnitine can do wonders for Graves patients. It worked miracles for you, hope it works for me as well.  

Research has suggested that L-Carnitine's effects are related to its ability to inhibit the entry of both thyroxine (T4) and triiodothyronne (T3) into the cell nucleus. This is important because entry into the cell nucleus is essential for thyroid hormone to cause the effects commonly associated with hyperthyroidism.

I am drinking lemon balm tea every day, it seems help me sleep. I am going to take Magnesium next. So far, I am introducing one supplement at a time to see how I feel. Thanks again.

May 12 2017 Lab results: T3 free 8.1(2.4-4.2);  T4 free 3.0(0.9-1.7); TSH<0.01. 

 

Are you on any meds like Carbimazole or Methimazole?  The ALCAR works better when combined with even a low dose of meds (i.e. 2.5 mg daily) as opposed to being taken without meds. That's good that you are introducing one supplement at a time to see how you feel. ALCAR did not have much effect on me when not taken with low dose meds.

Yes, thanks a lot for asking.

Apr 28 2017:  my doctor started me on Methimazole 10 mg once daily; on May 8th, I changed it to 5 mg twice daily (6am, 6pm) on my own because of some mild brief side effects like joint pain and itching rash.

Supplements:

Apr 28 2017:  Vitamin D3 1000 IU once daily.  Tested low Vitamin D level 29.0(30-100 ng/ml)  since Jan 2010.

May 3 2017:   Selenium 200 mcg once daily. Hope it can help my eyes.

May 12 2017:   Acetyl-L-Carnitine 500 mg once daily.

So you just started Acetyl on May 12th?  Do NOT raise it to 1,000 mg.  You are going to see a BIG change in your next labs.  Hopefully you can get labs again in 4 weeks?  Because when you are on Acetyl, you really need more frequent testing and adjustments.  Be sure to take it with at least one of your Methimazole doses as well as all the other supplements you are on i.e. Vitamin D3, Selenium.  If your labs improve as I expect they will, your doc should adjust your meds dose to 7.5 mg a day instead of 10. I know in my case when the TSH started rising, my Endo at that time lowered my dose from 10 to 5 mg and in two weeks, I had rebound symptoms because that was too fast a lowering.  I found in my case gradual lowering of meds works better and my second Endo really knew this.  He was very sharp when adjusting my Methimazole dosages when I was on Acetyl.  He knew exactly how much to decrease it. 

Hi Linda,

Thank you so much for all your great advice and hope you are doing well.

My June 12 Lab results showed normal free T3 & T4.  I feel better, all symptoms have improved except my eyes.

I worried my free T3 may go even lower than normal, so I decreased MMI dose, details below, start June 23: Change to Methimazole 5 mg 4x/week on Tue Thur Sat Sun;  2.5 mg 3x/week on Mon Wed Fri. Is this a good idea?  

 

Medicine & Supplements

1. Methimazole (MMI) 2017:

(1) Apr 28-June 15:  Start Methimazole 10 mg once daily:  total for 1.5 months.

June 12 2017 Lab results: free T3 2.4(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.0

 

(2) June 15-June 22:  Change to Methimazole 5 mg once daily:  total for 1 week.

(3) start June 23: Change to Methimazole 5 mg 4x/week on Tue Thur Sat Sun;  2.5 mg 3x/week on Mon Wed Fri.

2. Acetyl-L-Carnitine 500 mg once daily together with MMI, from May 12, no change.

3. Selenium 200 mcg once daily from May 3 2017, no change.

I am recently diagnosed with Graves disease and Graves eye disease in Apr 2017.

I am a 54 year old female, 5.0 feet tall, I lost more weight Jan-May 2017 to 92 lb.

 

June 12 2017 Lab results: free T3 2.4(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

May 12 2017 Lab results:   free T3 8.1(2.4-4.2);  free T4 3.0(0.9-1.7); TSH<0.01.

 

Have you had your vitamin D and Magnesium levels checked?  Vitamin D is very important to good thyroid functioning.  Do you take your Acetyl at the same time as your meds?  I am happy that your Frees are in range and you feel better but I am shocked that your TSH has not risen.  Your TSH rising is what will help lower your antibodies which I think should help the eye issues.  You could try doubling the Acetyl dosage but that's a choice you will have to decide.  I know how powerful this supplement is and the last thing I would want to see is you going hypo.  I did start my Acetyl dosing at 1,000 and also took Regular L-Carnitine along with it in the beginning but once my TSH started rising, I really had to adjust meds and supplements quickly.  I then took the Acetyl alone with the meds and found I had to lower the dose back down to 500 mg and then 225 mg.

Please keep us posted on your progress.

Thanks.

Hi Linda,

Your prediction in May “You are going to see a BIG change in your next labs.” is so great! I benefit more from you than my endo. Thank you so much!

 

Question: How many weeks did you take MMI+Acetyl-L-Carnitine 1000mg before your TSH started rising?

 

 

I take MMI+Acetyl-L-Carnitine 500mg together at 6am.

I haven’t check my Vitamin D and Magnesium levels because I’ve already taken them on top of MMI:

Acetyl-L-Carnitine 500 mg, Selenium 200 mcg, Vitamin D3 + Calcium + Magnesium Citrate.

 

After reading so much online trying to figure out my triggers for Graves, I did:

Diet change start Apr: No dairy; avoid lectins, avoid all grains, beans, nightshades.

 

My MMI dose:

Jun 16:  MMI  5mg daily + Acetyl-L-Carnitine 500mg together 6am.

May 12: MMI 10mg daily + Acetyl-L-Carnitine 500mg together 6am.

Apr 28:  MMI 10mg daily.

 

My Lab results history:

Jun 12 2017  Lab results:  free T3 2.4(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

May 12 2017 Lab results:  free T3 8.1(2.4-4.2);  free T4 3.0(0.9-1.7); TSH<0.01.  TSI 248%(<=122%).

Apr 26 2017 Lab results:   free T3 8.5(2.4-4.2);  free T4 4.0(0.9-1.7); TSH<0.01.  TSI 227%(<=122%).

Nov 14 2016 Lab results:  free T3 2.8(2.4-4.2);  free T4 1.4(0.9-1.7);  TSH 0.02.  TSI 129%(<=122%).

Apr 19 2016 Lab results:   free T3 4.5(2.4-4.2);  free T4 2.1(0.9-1.7); TSH<0.01.

Mar 31 2016 Lab results:  TSH<0.01. 1st time abnormal.

Oct 01 2015 Lab results:   TSH 1.81.

Sept 9 2011 Lab results:   TSH 1.55.

Jan 08 2010 Lab results:  TSH 2.64.

 

In my case, my Frees normalized immediately into mid to higher end of range when I was started on 10 mg of Methimazole but TSH was less than 0.001 and stayed there for two years while I was on this dose.  Then after reading the research article on Regular L-Carnitine, I took the recommended dose of 3,000 mg (after being tested and found to be deficient in Carnitine) and my TSH rose to 0.12.  At this time, my Endo lowered my dose of meds to 7.5 mg.  Then I experimented and tried the Acetyl by adding 1,000 mg to my Regular carnitine dose and my TSH shot up to 0.70 and my Frees dropped to bottom of range.  My Endo lowered my meds dose to 5 mg  Then I could not get Acetyl for a year so just took the Regular and other supplements and my TSH dropped down to 0.12 again.  I found Acetyl again and took 1,000 mg of Acetyl and no Regular along with my meds and my TSH shot up this time up to 2.50 and my doc lowered my meds to 2.5 mg and I lowered the Acetyl dose to 500 mg and then 250 mg and then the only way I could adjust the dosage was to take it every other day (Endo also advised taking meds every other day at one point) and I did which brought my TSH down into the value I was comfortable at 1.5.  It rose again and then I had to discontinue it altogether and was only on meds plus the other supplements and my TSH fell gradually over a 6 to 8 month period to around 0.76 and then for no reason started to rise again on its own to 1.5.  So you can see using Acetyl is a little tricky, (not like the other supplements) but you need to take responsibility for getting frequent measurements and adjusting it and hopefully your doc can adjust your meds properly (mine does).  As you can see from my history, it is extremely sensitive and tricky to use this and results will vary depending on your symptoms and values and how careful you are with its use.  I still take 2.5 mg of Methimazole at least 3 times a week along with my other supplements because I am afraid of relapse but I do not take Acetyl-L-Carnitine any more because it has done what I wanted it to do and it is too sensitive for me to continue taking it.  The Regular L-Carnitine is not as sensitive and therefore is easier to use.  So you can see, as Graves patients each of us is unique in our values and how long we have been walking around undiagnosed, time of start of treatment, etc and responses to treatment, even supplements. 

I think you have done well and been cautious in your application of Acetyl which is certainly better than those I see who just start it at 500 or 1,000 mg and make no adjustments or get no testing done.  They quickly report TSH's of 4's and feel horrible.  You need to keep in touch with your body and how you feel and note your lab values as you have done.  I was not on that 1,000 mg dosage for very long at all.  I just experimented.  In your case, I can see that 500 mg helped to normalize your Frees into the normal range without having to stay on a high dosage of Methimazole so that is good and you have been judicial in its use.  So keep that up.  In my case, my Endo was excellent at recommending Methimazole dosage changes so he took care of that part and I took care of the supplements part.  I would see if you could get your doc to do this too.  You are feeling better, your Frees are in a better place in range and if you continue, hopefully your TSH will rise also.  My eye disease was mainly dry eyes and red eyes.  I think your eye disease will also improve as all your results improve and especially if they improve enough to lower the antibodies. Keep them moist (I have had to use eyedrops continuously), I even had collagen plugs implanted to help the dryness.  You may want to try the Regular L-Carnitine as well as this is what I read the medical research article on and see how you feel on it, especially if your carnitine levels are low.  This is not as sensitive as the Acetyl and I had fewer side effects on it.  Please keep us updated on your progress.

Hi Linda,

You have great points, thank you so much!

It seems to me that for you MMI+Acetyl-L-Carnitine 1000mg made things up or down dramatically.

I’m going to keep MMI 5mg+Acetyl-L-Carnitine 500mg till my next lab test on July 12.

You are absolutely right. Patients with the exact same disease can have different symptoms and feelings, can have different responses to the same medication, but they do share some common grounds.

I’ve read that some Graves patients have their Frees dropped to normal range in reasonable time by taking MMI, but their TSH stay <0.01 for several years. After I read all your posts, I decided to take Acetyl-L-Carnitine 500mg, not L-Carnitine, within one month, my free T3 dropped to bottom of range, feeling much better.

I can't rely on my endo alone, she asked me to increase MMI to 20mg several times before my June 12 test, I insisted on 10mg because of side effects, I also carefully watch my feelings/symptoms.

Take care, and thanks again.  Queendy

 

Yes my Frees dropped with the first 10 mg dose treatment and stayed there on that dosage for 2 years. My TSH stayed at less than 0.001 for 2 years until I took supplements.   I guess your doc was worried when yours did not drop into normal range on 10 mg so she wanted to raise to 20 mg.  Docs are not trained in using supplements as well as meds so adjusting meds dosage is what they know.  Adding the supplements helped your meds work, I believe.  Glad you are feeling better and looking forward to your next blood results.

Your points make lots of sence to me.  I told her all the supplements I am taking, she did not say anything. She talked about Radioactive Iodine treatment which I'll never do it. Your case has help me tremendesly, thanks a lot.

Hi Linda,

How are you, it is about 4 months now, I have been taken Acetyl-L-Carnitine from May - Sept 2017 500-1000mg daily, all my TSH<0.01. Would you please advise, thank you so much.

Queendy

5/12/17: start Acetyl-L-Carnitine (ALC) 500mg together with Methimazole 10mg once daily.

6/16/17: start Acetyl-L-Carnitine (ALC) 500mg together with Methimazole 5mg once daily.

7/31/17: increase Acetyl-L-Carnitine (ALC) 1000mg together with Methimazole 5mg once daily.

May Lab results:   free T3 8.1(2.4-4.2);  free T4 3.0(0.9-1.7); TSH<0.01.

June Lab results:  free T3 2.4(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

July Lab results:   free T3 2.5(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

Sept Lab results:  free T3 3.5(2.4-4.2);  free T4 1.7(0.9-1.7); TSH<0.01.

 

Hi queendy07309,

May I ask how much methimazole and acetyl l carnitine are you taking now.

After finishing 2 bottles total 150 Veg Capsules of NOW Acetyl-L-Carnitine (ALC) 500mg on 9/3/17, I stopped taking ALC, just Methimazole 5mg once daily. Thanks.

Thank you so much for replying.

I am no expert but tsh will take some time to come up. It usually come when someone in remission or over-medicated.

When did you went for your sept blood test, i am just wondering wheter stopping acetyl l carnitine increased your level a bit, because you are on the same dose of methimazole. Thanks once again.

Thank you so much for asking, latest blood test date was on 9/29/17, had some stress due to hurricane Harvey, thanks.

Thank you so much again for replying. Might be possible due to stress your level increased.

Hi Queendy, It looks a bit strange on your test results: T3 & T4 are getting normal steadily, but not a bit improvement on TSH!  I would suspect if you take biotin or some nutrient drink/shake containing biotin and the test lab could use the method that can be interrupted with biotin to show low TSH though your actual TSH is higher or normal? Just wonder and wish you well.

Hi Mike,

Great thoughts, Thanks a lot.

I am avoiding biotin, iodine and lectin in food or supplements since being diagnosed with Graves disease in Apr 2017, looks like it is going to take a while for my TSH and TSI to become normal.

Take care.

Apr  Lab results:   free T3 8.5(2.4-4.2);  free T4 4.0(0.9-1.7); TSH<0.01.  TSI 227%(<=122%).

May Lab results:   free T3 8.1(2.4-4.2);  free T4 3.0(0.9-1.7); TSH<0.01.  TSI 248%(<=122%).

June Lab results:  free T3 2.4(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

July Lab results:   free T3 2.5(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

Sept Lab results:  free T3 3.5(2.4-4.2);  free T4 1.7(0.9-1.7); TSH<0.01.  TSI 222%(<=122%).

 

Hmm.. I can agree that it may take a while to raise TSH, but with ALC it should at least show sign of improvement in time. At least, in my case (take 500mg ALC with 5mg/2.5mg MM) TSH was improved from <0.01 (when diagnosed) to 0.01 to 0.12 to 1.99 (now as I am euthyroid) in just 3 months. Your stubborn <0.01 TSH with ALC intake really puzzles me.

Hi Mike,

That's incredible with your case TSH normalized in just 3 months. 

It seemed to me that the NOW Foods Acetyl-L-Carnitine 500mg total 150 Veg Capsules I took did not work for me. Don't know what to do now.

My TSH is really stubborn, also I had severe symptoms appear after TSH<0.01 for about a year. 

Thank you all so much!

Sept 29 2017 Lab results:  free T3 3.5(2.4-4.2);  free T4 1.7(0.9-1.7); TSH<0.01.  TSI 222%(<=122%).

July 12 2017 Lab results:   free T3 2.5(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

June 12 2017 Lab results:  free T3 2.4(2.4-4.2);  free T4 1.2(0.9-1.7); TSH<0.01.

May 12 2017 Lab results:   free T3 8.1(2.4-4.2);  free T4 3.0(0.9-1.7); TSH<0.01.  TSI 248%(<=122%).

Apr 26 2017 Lab results:    free T3 8.5(2.4-4.2);  free T4 4.0(0.9-1.7); TSH<0.01.  TSI 227%(<=122%).

Mar 2017:  Severe symptoms appear after TSH<0.01 for about a year.

Nov 14 2016 Lab results:   free T3 2.8(2.4-4.2);  free T4 1.4(0.9-1.7);  TSH 0.02.  TSI 129%(<=122%).

Apr 19 2016 Lab results:    free T3 4.5(2.4-4.2);  free T4 2.1(0.9-1.7);  TSH<0.01.

Mar 31 2016 Lab results:   TSH<0.01. 1st time detected abnormal.

Mar 2016:  Went to see doctor due to sleeping problem.

Oct 01 2015 Lab results:   TSH 1.81.

Sept 9 2011 Lab results:    TSH 1.55.Jan 08 2010 Lab results:   TSH 2.64. (TSH Range 0.27-4.20 uIU/ml)

Hi Queendy, Other than I use Now ALC 500mg 100 veg caps, don't see why it didn't work on raising your TSH... Maybe for the past 1.5 years, did you go under any alternative/naturopath treatment? I did for the past 10 months or so. May want to do some research on them. Warning sign: your T3 T4 numbers are flaring up again quickly from June/July to Sept!!! Did you change your med? Wish you well.