Graves and TED- Acetyl L Cartinine and other supplements

Hormones
1

Can anyone who takes acetyl L-cartinine and/or L- cartinine tell me what dose they use and what the difference is??

Also what changes to their diet has helped ease Graves symptoms?? ie gluten and dairy free etc

I bought both supplements but dont really know which is best or how much to take! I dont know if any of you Graves patients have this but I very often get totally absorbed by something and obsess about it for months undertaking minute research and then suddenly I can just as easily forget or lose interest!! I bought many supplements at considerable cost and I have renewed vigour and really want to have another bash at taking them properly to get me better and amending my diet to help me shift a stone or two.

In addition to 5 mg of carbimazole daily,

I also have the following:

Bugleweed:  palpitations/nervous system/insomnia

Omega 3 Super: Eyes

Glucosamine Sulphate:

Royal Jelly: Eyes

Flaxseed Oil: Eyes

Selenium + Vits A,C+E: Antibodies/eyes/liver function

Does anyone else take these supplements? Have you noticed any improvement?

It gets confusing as some of my research is conflicting and I would be interested to hear some feedback!!

Many thanks

 

2

Oh also, just to give a bit of background, I was diagnosed with severe Graves and Mild TED in Nov 2012. I was referred for an urgent thyroidectomy as I was in bad shape (2 thyroid storms nearly finished me off). I refused. My eyes started bulging a few months after the Graved diagosis.

I was put on 100mc Levo thyroxine and 80mc carbimazole plus 80mc propranolol. My legs were so badly damaged that I have had ti use a walking stick and only this year have I started managing without one.

I am now down to just 5 mc of carbimazole but I still get brain fog, ocassionally unable to get out of bed, some double vision etc but 80% of the time I feel ok. Not great. But ok. A million times better than I was at diagnosis!!

Thanks for listening!

3

You were on a Block and Replace regimen with Carbimazole and levothyroxine which I don't know much about but I do know that high doses of drugs tend to give the most side effects.  There is another Graves Board where a patient posted about a Block and Replace regimen with a low dose of both meds that orginated from a medical centre in the States that had great success in putting people into remission and lowering their antibodies.  So that's as much as I know about Block and Replace.  As for the Carnitines, I was put on 10 mg of Methimazole at diagnosis when my FT3 was a little out of the top end of the normal range and my FT4 was about 10 points over the top end of the normal range and my TSH was less than 0.001.  On 10 mg my FT3 and FT4 normalized immediately in the middle to high end of the normal range.  My eyes had irritation, redness, extreme dryness but no bulging.  On this dose nothing changed in 2 years.  My lab results remained the same including the less than 0.001 TSH.  Then I read an article on L-Carnitine and hyperthyroidism and tried it and my TSH rose to 0.05, still not normal but in the right direction.  Then I tried different carnitines and tried Acetyl-L-Carnitine and my TSH rose to 0.78.  It promptly dropped again to 0.12 when I could not obtain the Acetly for quite a long period of time (over a year) so I remained on regular L-Carnitine.  I was tested for Carnitine levels before I ever started supplementation and I was deficient. I was also tested and found to be vitamin D deficient.  When Acetyl was available again, I tried it at 1,000 mg and quickly had to reduce it to 500 mg because it altered my levels so quickly.  It required changes in my doses of Methimazole which my doctor took care of and changes in doses and whether or not I took Acetyl (decisions I made) to keep my levels in balance. I  have known others who have used it after I have posted my story and not watching levels and not making adjustments have sent them very very hypo so I would caution anyone who uses it about this.  I also would not take Bugleweed if I was taking either regular L-Carnitine or Acetyl-L-Carnitine.  The carnitines work with low doses of antithyroid meds like Carbimazole or methimazole but on their own I am not sure if they are as effective.  I now have all normal levels of all three thyroid tests, normal antibody levels and am on 2.5 mg of methimazole which my Endo has given me the choice to continue to discontinue.

4

Hi Linda

Thanks very very much indeed for your detailed reply! AFTER I posted this discussion I almost took it down as I see there is another one quite similar, discussing the merits of alternative treatments for Graves.

It seems you are quite the expert and I think you are bloody brilliant for being so generuous with your information and time.

I dont quite know why but I am totally unable to concentrate long enough to learn about TSH levels, antibodies etc etc so I think I shall have to start over with blood tests next week and regularly monitor them and try to balance out my supplements. Thanks for the tip on bugleweed! I wont take it while on Acetyl. This is why I wanted advice...I have too many supplements and really want to take them properly and not have some of them cancel out the effects of others.

It is not an easy or straightforward process!!

If I could afford to go to a naturopath I most certainly would...but I will still try to do what I can! Good luck maintaining your levels and I will check in to see how you are doing.

I am going to ask my endo to reduce my cab from 5 to 2.5mg when I see him in 2 weeks time as I dont really remember to take it every day (actually I deliberately dont take it) and it is better for me to be on a minute dose which I WILL take regularly

In the meantime I will take 500mg of Acetyl daily, and only increase it when I decrease my carbimazole intake.

I also find it very very confusing being hyper most of the time and then suddenly hypo. Taking the carb is obviously supposed to temper the hyper side of things but I cannot wait (weight!!!) to give it up altogether as I do sometime feel too sluggish to move and cannot shift the 2 stones that I have put on.

It is obviously a very small price to pay to have reasonable health but it is a shame that endos do not do more to incorporate alternative treatments for Graves patients.

If I were to win the lettery you can bet that I will fling an obscene amount of money at this....although I fear the pharma companies will still continue to flourish, given they rake in billions from doling out tablets!! Anyway, I digress....

The main focus for me (as my research showed up) I think is to:

Try to fix my leaky gut

Get help with my adrenals. I am 100% sure adrenal fatigue played a huge part in my Graves diagnosis

Try to find am alkiline diet that works for me

Take high doese of vitamin D daily and continually

Find some form of excercise (I have recently been referred to a physio so that should help)

That should take care of the worst symptoms.

What no one seems to also consider or discuss is trying to find ways of being happy. Increasing endorphins and lowering stress as much as possible.

This is such a struggle when one is not feeling 100% but I feel it is vital to allow the body to heal itself faster.

So to this end I shall be pursuing hobbies that make me happy

ie

Taking up sewing

FINALLY joining a tango class (even though my legs are very unsteady and my knees do not like being in the bent position!!!)

Forcing myself to go to new and free events and networking opportunities that are advertised all over facebook!!!.

Joining a free French conversation group.

This, to me is holistic...mind, and body, and soul......and hopefully some day I can lose the carbimazole and rely totally on alternative remedies!!

 

5

I use the Acetyl-l-Carnitine, but I think my experience is atypical.  

I started using it after Linda here wrote about her experience, but I wanted to research it a little first.  In doing so, I came across references to Primary Carnitine Deficiency, which in its "true" form [having a defect in both copies of the SLC22A5 gene] is deadly from birth, but that being a carrier for the defect may, or may not, cause some symptoms.

It turns out that the symptoms were ones I had associated with being hypothyroid, but never getting a diagnosis for it until after I was diagnosed with the Graves' Disease.  

When I was put on Methimazole [MMI], my symptoms were immediately much worse, but the Endocrinologist(s) only cared about my numbers, especially TSH [which can often get stuck in the zero zone until long after the FT4 and T3 have normalized.]  

Much more drama ensued, until, while seeing the second Endo, I took matters into my own hands and decreased my own dose of MMI.  I would decrease the week's dose by about 1/2 tablet, but maintain the new level for at least 4 weeks prior to my next blood test.  At first the doctor had me do this, taking pity on me because my brain fog was so bad that I fell face down in the street, and had no clue as to what caused the fall.  The next blood test after the dose reduction was the first test where my TSH had returned to normal.  The test after that showed I was hypo, so I got another dose reduction.  But the Endo was afraid I would go hyper again so he would not order another dose reduction, so that is when I took matters into my own hands.  

I was able to go completely off the MMI eventually, without going hyper, but still had hypo symptoms. More drama... Then I learned about the ALC from Linda.  I took it when my TSH was dropping, but I returned to normal.  I have taken the 500mg twice daily, then 1000mg twice daily with no ill effects, just some slight positive ones.  My small muscles don't seem to get so easily fatigued, mainly.

Just this week, the health food store was out of 1000mg ALC, so I thought i would pick up some 500mg tablets instead.  I accidentally got ALCarnosine instead, and just read about it.  Maybe it is just as well, because it sounds pretty good too.

Other than that, I often have a couple of Brazil Nuts with a dehydrated Apricot half, and other supplements like Fish Oil, Flaxseed Oil, Calcium-Magnesium-Zinc, Methyl B12 and Methyl Folate, Biotin, and Vitamin D3.  I took Niacin until I got heat flushes.

I have also been prescribed Wellbutrin, which made the most difference in helping me avoid the symptoms of hypothyroidism.