[Kimberly]

#1064802

Hello and welcome to the boards! Sounds like you and your partner have been a great team as she works towards re-gaining her health. Not all patients have the benefit of a strong personal support system, so my hat is off to both of you! I just wanted to add a few comments to you post…

On the cause of Graves’, the latest research that we have heard is that there is a genetic *predisposition* towards getting an autoimmune disease. Not everyone that has this genetic defect will get an autoimmune disease…nor can doctors predict *which* autoimmune disease a patient might be diagnosed with. It is believed that there is some trigger that causes the autoimmune reaction to kick in, for example, stress, illness, or physical trauma.

You didn’t mention whether your partner continued her Anti-Thyroid Drug therapy while experimenting with Chinese medicine. The Foundation’s position is that while alternative therapies can provide a good *complement* to traditional medicine, completely foregoing conventional treatment for hypERthyroidism can be very dangerous.

Also, I’m not that familiar with Carnitine, but I just wanted to mention that patients should consult their doctors before adding any type of supplement. Some supplements can impact the absorption of replacement hormone, or can interfere with the effectiveness of anti-thyroid drugs. It’s a good idea for our docs to be on top of *all* supplements that we are taking, even the over-the-counter ones.

Again, welcome to the boards! Hopefully, your partner will be able to join us as well.

[Harpy]

#1018434

I’ve been looking for an appropriate forum to share information.
Just doing this for my partner, she is the patient, I am her researcher, administrator and advocate.
Sorry if this gets a bit long winded, but it always is at the start.
Thought I better put something up that others may benefit from.
Just to remind everyone out there, The doctor is working for you, and don’t be bullied into something your not comfortable with & try to get someone to attend appointments with you if possible to support you.
She was diagnosed over 3 years ago, started on methamiozole & Inderol initially, had some sort of rash reaction, went onto PTU and still on it.
Her T4 & T3 levels were through the roof initially and it has taken this long to get them into the right range and the right ratio about 3.5:1, I know different places have different scales, so you need to look at the normal levels listed on your test results. I have charted all her test results which show through all the ups and downs the gradual diversion of T4 & T3 on their approach to their propper ratio and recently TSH has shown some very small indications of rising, so fingers crossed.
She did try some traditional chinese medecine in the first couple of years, not sure if it helped or not, but she was coming under pressure to make a final decision Radiation or Surgery, and neither of these seemed appealing, so I teamed up with my sister (naturopath)and the 3 of us put together a treatment plan.
Our current position is that Graves is an autoimmune disease without a defined cause, doctors can’t tell you what did it, most likely brought on by years of innappropriate nutrition and dietry & environmental toxins, with the colapse of the thyroid and subsequent symptoms the final breach after many years of siege. So the natural assumption then is it may very well take just as long if not longer to heal the body.
We approached the her endochrinologist with our treatment plan and lots of supporting evidence and she was actually quite positive about our approach, so that was good.
The plan design was based on bringing the body back to a Healthy state to allow it to heal.
1/ Diet – Low alergenic diet / Paleolithic diet, you can google it, basically if you can’t eat it raw then it’s questionable so meat, fruit, nuts, seeds, veg = good, whereas grains, Legumes, starchy tubers, soy in particular = Bad
2/ Lifestyle – Meditation, stress management, light exercise, keep blood flowing
3/ Supplements,- Vitamins and Nutrients to support body, which I will not post specifically, except to say that the Hyperthyroid state depletes the body of many essential nutrients, I can provide a more detailed list on an all care and no responsibility basis, but you should always have a second opinion.
One that I will mention is Carnitine, do your own research, but my partner has been taking Acetyl- l-Carnitine and it seems to have helped significantly, there have been a number of scientific studies done on this, just Google Carnitine + Thyroid, some of the benefits are reduce Brain Fog, Helps muscle strain, Minimises risks of thyroid storm and it is naturally found in the body along with the fact that Hyper state, Thyroid medication and ageing all deplete the bodies natural reserves of Carnitine, don’t be weirded out if you hit some Body building sites, these guys use it as well. If you decide to try it make sure you get pharmaceutical grade in capsules, not the powder stuff which is not controlled as well for purity.
Please always get another opinion and be responsible for your own decisions, every case is different.
I have also been keeping detailed records of resting heart rate & Body Temperature which is useful to watch for a change in trend as a possible early indicator of shifting symptoms.

[Harpy]

#1064803

Thanks for reply
Good to see an active forum, I tried another one and posts were weeks apart.
We are located in Australia.
I can’t see your reply ATM but to respond
Yes she has been on the antithyroid medication right through the period, she has been trying a variety of things as a support to the conventional treatment protocol and I agree fully that you should keep your doctor informed of all the supplements that you may be taking.
I also understand that there is some opinion out there that suggests there is likely some genetic disposition, but we are all genetically predisposed to something, and I think that knowledge/opinion ties the issue off neatly and unfortunately defers the real question of what causes/triggers it.
There is also a growing body of thought that environmental toxins of modern life accentuate the genetic predisposition by further weakening the immune system along with the reduction of nutrition in foods (in cross breeding they are selected for transport, storage and appearance)and then as you say a stressful event or illness may well be the "straw that broke the camels back.
An improvement in Nutrition & reduction Stress & Environmental toxins may not prevent/heal everyone predisposed genetically to this condition, but it can’t hurt and I believe it would help a lot of people avoid the hypothyroid condition.
I don’t know if anyone here has discussed the issues of Soy, there is concern that raw Soy products may be a significant health concern, I’ve read that it should preferably consumed in the fermented bean curd state if consumed at all. There are a number of issues, but the one I would like to point out is the prescence of Phytoestrogens which basically mimic oestrogen and may take up its receptors in the body thus causing hormone imbalances. I couldn’t believe how much Soy is put into foods as a cheap filler, it was in virtually every comercially produced bread, tinned products, snack foods.
Re the Asian Health link, historically most soy consumed in asian countries has been in fermented form and the US is the largest per capita consumer of soy, I think closely followed by Australia and other developed countries.
Sorry if I am ranting/preaching a bit, just got to get it out and share it.

[cynthia]

#1064804

loved the info on your blog I am medical person and am looking for web info preferally medical site on the muscle wasting assocated with graves ie weakness also fatique as this is a hugh problem with me….would appreciate any direction you might find thaks cb

[cynthia]

#1064805

how many mg of carnitine?????cb

[lhc11]

#1064806

This is actually more of a response to Cynthia: Cynthia, a good place for medical information is PubMed.com, which is connected to NIH and provides abstracts of biomedical research. Without a subscription you can’t get access to the full studies, but you can see the abstracts and read the hypotheses and conclusions of all kinds of studies related to Graves’ and hyperthyroidism. I found this to be a reassuring resource–if at times difficult to read, even in abstract form–when I was going through the worst part of the disease.

lhc11

[Kimberly]

#1064807

Hi Cynthia – If you are interested in any supplement, I would check with your doctor first. I know of patients who have actually done more harm than good by taking supplements without understanding potential side effects or drug interactions. Also, keep in mind that supplement manufacturers here in the U.S. aren’t regulated as stringently as drug manufacturers, so if you can get your doc to recommend a *trusted* brand, that is helpful as well.

[Harpy]

#1064808

Hi Cynthia
As Kimberly has said any supplements you take or any changes you make in your lifestyle should be done fully in conjunction with your doctor/endo and we presented our plan to our endo before we started anything and she couldn’t see any reason not to and was happy to work with us on a longer term basis.
There have been a variety of studies using Carnitine for a variety of reasons starting the main trials were done in Italy by Salvatore Benvenga, if you do a google with his name + Carnitine + Thyroid you should get plenty of hits The link below is study Published in the Journal of Clinical Endochrinology & Metabolism
http://jcem.endojournals.org/cgi/conten … ;86/8/3579
I as i do not now all your symptoms and am not a medical practitioner I can not advise you on what you should do.
I suggest you set aside a good deal of time to research, just Google various combinations of Thyroid (Hyper), Carnitine etc. and you should get plenty of reading, I did spend entire days doing this, make sure you play devils advocate and track down side-effects, drug interactions etc. If possible ask someone else with a critical eye to look over your findings.
Generally reccomended dose is 1-4g/day anything over that should be in a supervised study.
My partner has been on a minimum dose 1g/day of Acetyl L Carnitine for 6months, she started to notice some improvement in about 4-6 weeks we think, it’s very hard to guage because it’s action is slow. I suppose this is because, being part of the normal metabolic process, it is only adding a little more to the bodies own sources and the body is only doing what it normally does.
Do not consider using the cheaper powders body builders use re risks of contamination, this area of use is what I believe gave carnitine a bad rap with the association to steroids.
Only use pharmaceautical grade, to ensure dosage & purity.
Also check out the Wiki. page it has a bit of a rundown of where Carnitine fits into the body metabolism.
Do your research, prepare your proposal, talk to your Doctor, be prepared that they may not know anything about it, re busy life, unfortunately I think a lot of them get stuck dealing with day to day issues and don’t see much of new developements until the drug rep turns up to take them out to lunch.
Carnitine is not a substitute for ATD’s, just a body support.
Anything you do to help your body heal (Diet, Nutrition, Lifestyle) wil increase the effect of any medication or supplements you may take.

[Harpy]

#1064809

Cynthia
Just posting a clarification on dose levels, copied from this link

http://keithconnectsthedots.com/2007/12 … sease.aspx

To date, clinical trials have shown that doses of 2,000-4,000 mg/day of L-carnitine are helpful in individuals who suffer from hyperthyroidism. Future studies may uncover similar benefits of other carnitine formulations such as acetyl-L-carnitine, acetyl-L-carnitine arginate, and propionyl-L-carnitine, along with the doses needed to match the efficacy provided by 2,000-4,000 mg L-carnitine.
Until scientists reveal the most effective dosages of each carnitine formulation, the following chart may provide preliminary guidance
L-carnitine:2,000-4,000 mg/day
Acetyl-L-carnitine: 800-2,000 mg/day
Acetyl-L-carnitine arginate: 600-1,000 mg/day
Propionyl-L-carnitine: 600-2,000 mg/day

The link is a Magazine articles and has about 15 sources, mainly studies listed at the end, you may be able to track down the studies and read the detail.
And I can not stress enough the need for people to do lots of research, take care and due diligence, keep their doctor informed of any changes they make in their life, make informed decisions and take personal responsibility for the decisions they make.
Everyones case is slightly different and you need to tailor a solution that you are comfortable with.

[cynthia]

#1064810

thanks all for great info will of course follow up with endo but she is very concertative I am not had throid study mon. will see results on thurs and go from there thanks again cb

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