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