over active thyroid returned :(

In addition to the great suggestions from Veronica, I and other people on this board have benefitted from the use of acetyl-L-carnitine in conjunction with the thyroid meds. A couple of people have posted that their muscular pain went away with using this.

Linda's suggestion caused me to do some research and "experimentation" of my own condition. I now know the link between carnitine and the thyroid, and tried the carnitine for my extreme muscle weakness (esp. legs). Although I started paying attention and realized that when I ate red meat, I felt stronger and a bit more energetic, when I started taking the acetyl-L-carnitine supplements in conjunction with my thyroid meds, it really didn't seem to improve my muscle fatigue.

So, I started doing more research and talking with others. Doing so also helped trigger two things that I had "forgotten" (probably because I was so focused on my thyroid when I was diagnosed with hyperthyroidism) -- I have the Epstein-Barr virus and was told several years ago by a chiropractor that my adrenals were "shot." I then did more research on those two things and found that many of my symptoms were indicative of adrenal fatigue, as well as thyroid imbalance.

My research and talking with a friend who is very informed about homeopathic remedies, and also had the same health issues that I am now having, recommended the herbs I wrote about earlier. They helped her immensely. I am waiting for these herbal supplements to arrive in the mail this week and can't wait to begin taking them!

I have high hopes that they will help me. But, if not, then my investigation continues...

My point is that you may have to become a detective and investigator so that you're able to pinpoint what is really happening in your body. It may be a combination of things, or...??? You'll have to solve your own mystery, but this forum will give you lots of leads to help you! The doctors will never spend this much time trying to figure things out for you. And they will be focused on one thing and not take a holistic approach.

I hope, for starters, that the acetyl-L-carnitine helps you!

Best of luck!

Hi Sue, I too have Graves and have to say that although I did not really suffer with muscle aches after I started with the carbimazole, I can strongly recommend the carnitine. I have now been taking it for about six weeks and I feel absolutely fantastic. I am cycling, swimming and horse riding and have never had so much energy. I am actually going for a blood test today as I am just curious to see if my TSH levels have improved as I am convinced they are.

I seriously doubt that the carnitine works in isolation, but as a supplement to the tablets, I believe it is brilliant. You certainly haven't got anything to lose by simply trying it. Just try and convince your doctor to give you the tablets again first before going down the RAI route.

Good luck though.

Hi sue i do hope you get some help very soon I have fibromyalgia and that gives you the same illness that you are speaking about do you think it could be that a lot of people have it but they them self don't no that they have got it is a little like the thyroid a lot people have it but is not till they go to the doctors they can only rule that one out I would have a talk to your dr and ask him nothing lost I wish you well sue and good luck

I have hyperthyroidism with thyroiditis and multi nodular goiter although my antibody tests came back negative so it's not Graves. I have been on PTU for 3 years and chickened out of surgery as I am worried about having a general anaesthetic - I have so many drug allergies since my thyroid started acting up. I saw a natural health doctor in December who ran some tests and although my blood TSH, FT3 & FT4 are normal, urine thyroid tests show hypothyroidism. He also did a cortisol saliva test which showed adrenal maladaption stage 2. I feel so ill, my neck and glands are painful, I have a raspy voice, palpitations, feel sick and feel like I am going to pass out. This alternates with feeling sort of ok one day and like death the next.

Does anyone have any advice on diet to help control this. My thyroid won't uptake enough to have radioiodine treatment. It took 3 years for this condition to be diagnosed so I have been ill for 6 years and cannot take any more of it.

Jeanette --

If you have adrenal issues, then please see what I wrote about 8 notes ago on this thread (thanks for the plug, Linda!).

Many have been helped by Linda's suggestion to take the acetyl-L-carnitine, which is awesome!

I tried it, but it didn't do much for me. Through further research, I believe that my thyroid is much better from taking methimazole, but my symptoms continue because of adrenal fatigue (I have the same symptoms as you). I also don't want to continue on the methimazole much longer, as I don't want to become hypo and then possibly be on medication for THAT!

My friend made some homeopathic suggestions to me, and i'm waiting for my mail order to arrive this week to begin take the herbs she suggested. She was healed taking the recommended herbs!

From reading the threads and everyone's issues, it appears that those with Graves have had positive response to taking the acetyl-L-carnitine.

I don't have Graves, but I have hyperthyroidism, which I believe is what they call "thyroiditis" and is the result of a very weak immune system and a dormant virus (Epstein-Barr which most of us have) becoming active again and attacking my thyroid. I also have a history of adrenal fatigue and had chronic stressors in my life for the past few years -- all of which contributed to my current condition and symptoms.

Linda is right -- diet is SO IMPORTANT! I eat well, but I am probably not as strict as I should be. Detox diets and anti-inflammatory diets are a necessary component to healing, as is taking a good quality multi-vitamin, and removing (as best you can!) stressors from your life.

Another thing I have to say is that if we have weak immune systems, we should not have ANY type of invasive procedures, such as surgery or RAI. Our bodies cannot handle it and, I believe, will end up doing more harm than good. I don't usually believe in invasive procedures, regardless.

If you do a little research on inflammation, you will learn A LOT, and it will give you a new perspective on ANY kind of illness our bodies have. ALL diseases and illness have an underlying emotional root, and we must address this, as well as do what is necessary to heal physically. You might even find some helpful info on the internet when you search "emotional causes for disease" or "spiritual causes for disease."

Best of luck!

Thanks for the replies. I recently found out what started this. 6 years ago I was an archivist and we had a water leak at work. I was made to sort out the damaged documents which were covered in black mould. I spent about 2 weeks cleaning the stuff off but didn't know at the time it could be dangerous. 4 weeks later I had a weird reaction to epinephrine in a dental anaesthetic and then an allergic reaction (uticaria) after 1 dose of penicillin. I saw an allergist and was injected with solu-cortef (steroids) which I suffered an anaphylactoid reaction to, I was then put on 3 weeks of Ciprofloxicin and got sicker and sicker. Now having tested positive to a urine mould test I have found out from specialists on mould and environmental illness that the mould would have damaged the myelin layer of my adrenal glands and also caused hyperthyroidism. I became even sicker last year after being given fluoride treatment at the dentist and was bed ridden for a couple of months. I was tested for porphyria and the test came out positive then I was tested again a few months later and tested negative. Seems like this adrenal/thyroid problem causes a lost of symptoms and a lot of false positive test results. It is all so confusing.

I don't know if you have a Worker's Safety Insurance Board program in your country but we have it here and I would file a claim with them for what you have. You deserve to be compensated for your illness, to say the least.

While I have benefitted from the use of L-Carnitine and Acetyl-L-Carnitine, I have always had the cooperation of my doctors in the use of it, i.e. more frequent blood tests, etc. I have found especially with the Acety-L-Carnitine that I have had to have many frequent blood tests and I have adjusted my dose of L-Carnitine and Methimazole accordingly. This was not as much of a problem with the regular L-Carnitine.

So anyone on these boards who are thinking of trying it because of the postings on the board should keep in mind that you need to work closely with your doctor to do this and to have frequent thyroid monitoring tests, especially with the Acetyl-L-Carnitine in order to adjust doses of other medications as necessary.

With Methimazole, I think it helps the cells absorb it, hence why I think my TSH values improved so much. But it could also cause more absorption of other drugs like anticoagulants so again I would recommend working very closely with your health practitioner and measuring blood levels frequently. I found providing the reference of the research papers by Dr. Salvatore Benvenga to my doctors was helpful in gaining their cooperation.

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In researching this on the web, I found the following from the University of Maryland Medical Centre:

Hyperthyroidism. Research suggests that L-carnitine may help prevent or reduce symptoms of an overactive thyroid, such as insomnia, nervousness, heart palpitations, and tremors. In fact, in one study, a small group of people with hyperthyroidism saw these symptoms improve, and their body temperature become normal, when taking carnitine. But a larger, better-designed clinical trial is needed to see if carnitine really works. In addition, researchers think carnitine may work by blocking the action of thyroid hormone, which could be dangerous for people with low thyroid levels. Don’t take carnitine for hyperthyroidism without your doctor’s supervision.

Hi Sue - I've taken carbimazole 3 times in total since 2001 as I didn't want RAI.  I know it doesn't work for everyone but it did for me.  I'm now taking no prescription medication at all and am making no thyroid antibodies. I was able to retire from work which helped most of all.  I drink aloe vera whole leaf juice daily as it's good for auto immune diseases - bought a book called The Essential Aloe Vera by Dr Peter Atherton which demonstrates some of its strengths.  I take a food state vitamin and mineral tablet daily too and meditate daily to aid relaxation and anxiety.  I eat a healthy diet with plenty of fresh stuff and as much organic food as possible and feel really well and relaxed.  I feel you can cure yourself if you take time.  

Hi Sue, my Graves disease kept coming back also.  I opted for a thyroidectomy at the time, which was probably not the right choice.  I was trying to get pregnant and the radio active iodine was not an option.  I am on thyroxine 100mcg and will be for life.  I am considering getting off that brand and trying Synthroid (brand name so will be 3 times more expensive) as I have many side effects (itchy skin, achey muscles, excessive sweating, nausea).  My side effects are not life threatening and I can go on with life, but they are exremely annoying!