Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hi Everyone,
We put this together back in 2002, with the last update done in 2006. It was a popular tool to help with new members in our groups, and I hope it will be here too.
I'm going to post it, as is..and we can see how the formatting here displays it.
I am open to doing another update, when we see what's missing , given the time that's passed since we started it.
Will do a separate entry to keep things clear.
Pam
We put this together back in 2002, with the last update done in 2006. It was a popular tool to help with new members in our groups, and I hope it will be here too.
I'm going to post it, as is..and we can see how the formatting here displays it.
I am open to doing another update, when we see what's missing , given the time that's passed since we started it.
Will do a separate entry to keep things clear.
Pam
*You're not alone*
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First of all I want to welcome you and congratulate you on reaching out for support and for beginning your education on this disease. I know this is a very frightening time in your life, but now that you found this site and a group of people that know what you are going through, take a deep breath and realize you are not alone! Part of you must be so relieved to know there is a reason for all of your symptoms - that it's NOT all in your head. As long as you are getting proper treatment, you will not die from this - in fact you have a really good chance of going on to live a perfectly normal life. It's going to take some work and some time, but know that it's possible and let that be your goal. Becoming educated about this disease and your options is the most important thing you can do right now. This is an autoimmune disease, which means that your immune system is sick.
*Your thyroid is not sick + initial info links/books*
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You thought your thyroid was sick? No, your thyroid is the victim - your immune system is attacking it and causing it to release too much thyroid hormone. And when that happens, it affects your whole body. Here are some great links that will get you started learning about Graves' disease, autoimmune diseases and your treatment options:
1) http://www.bbc.co.uk/dna/h2g2/A688241 - This is a great overview of Graves' Disease and treatment options.
2) http://www.suite101.com/articles.cfm/graves_disease - This is a wonderful collection of articles by the author of "Graves' Disease, A Practical Guide", Elaine Moore.
3) http://www.niaid.nih.gov/publications/autoimmune/ - An explanation of autoimmune diseases.
There are many books available. The most informative on Graves' Disease and hyperthyroid is "Graves' Disease a Practical Guide", by Elaine Moore. This book contains the latest information about treatment and triggers, and has lots of personal stories in it - what real people have done to get better. The second book you might want to read is "The Thyroid Solution" by Dr. Ridha Arem - it has some excellent chapters on the mental aspects of this illness. Another great source of information and personal stories is in the archives for the many support boards. Go to the home pages of these boards and search through the archives for the subjects you are interested in. This is an incredible sources of information.
**What Your Doc Should Give You Now To Help You**
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Your doctor should have given you a beta-blocker, which will help slow your heart rate down and give you some relief. It may help you to sleep better too. If your levels are more than just a little high, you should have been given a prescription for one of the anti-thyroid meds (ATDs), PTU, MMI or Tapazole. These steps will help you to get your head back and make you feel better. It may take 4-8 weeks to get all the excess hormones out of your system, but you WILL start to feel better soon.
**What You Can Do NOW To Help You Feel Better**
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Here is a list of suggestions, many of which will help you to feel better right away:
1.) Quit your coffee, black tea, chocolate and/or soda habits. Alcohol too. Drink lots of water.
2.) Cut down on iodine. Replace your iodized salt with natural sea salt or salt without iodine added.
2. A) Watch out for shellfish and processed foods that contain MSG or "Flavorings". Try to buy organic foods whenever practical.
3.) Some of us have improved our health by eliminating dairy (dairy is high in iodine) and/or by eliminating wheat. People with Graves' have a higher chance of having celiac disease, which is a gluten sensitivity. Gluten intolerance can in some cases trigger Graves', and some people who have eliminated wheat from their diets have resolved their autoimmune thyroid disease.
4.) Find a good quality multi-vitamin/mineral supplement that you have to take more than once a day. This should not contain iodine and should contain copper. My favorite one is here: http://www.drz.org/asp/store/DetailPage.asp?ProductID=369
5.) Add Omega 3 foods or supplements (cold pressed refrigerated flaxseed oil and omega 3
eggs are good) to your diet. This will help your eyes if you are feeling any symptoms of thyroid eye disease. More on the benefits of flaxseed oil: http://www.totaldiscountvitamins.com/Merchant/flaxinfo1frame.htm
6.) Try to eat 60-75 grams of protein a day, including protein with every meal or snack. Some good ideas for protein include nuts and nut butters, fish, poultry & meats, eggs, yogurt, humus beans, lentil soups, etc.
7.) Let yourself rest, be kind to yourself and learn to say "no" when you really need to. Learn some relaxation exercises or yoga. Here is a link that will help you get started: http://www.healthy.net/library/books/jahnke/index.asp
8.) Avoid products with herbs or ingredients that "stimulate" the immune system (such as echinacea, goldenseal or ginseng for example). You want to avoid anything that will stimulate your already overactive immune system. There are many herbs and foods that "support" your immune system which is completely different, but this can be confusing if you don't know the difference so you may want to consult an herbalist, naturopathic doctor or nutritionist.
And finally, I want to warn you that there are lots of products out there that promise to "cure" thyroid problems. Much of this is garbage; you should always research any product or herb before you try it. Read product labels on all over-the-counter drugs and stay away from cold medicines in particular - you can really harm yourself with some of these over-the-counter drugs. Take care and good luck in your journey to good health. Remember the only stupid question is the one you don't ask.
**NO RUSH To Make Permanent Treatment Decision**
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Don't let ANYONE, including your doctor, rush you into any permanent treatment solution (e.g. RAI or surgery). Unfortunately, the information you get from your doctor may not be up to date, or accurate. Research the information they give you and don't be afraid to ask questions. In a little while you might actually know more about Graves' disease than your doctor, and that really will be empowering.
None of the treatment options are perfect. They all have costs and/or risks involved. You have to learn about them all and decide for yourself what is the best one for you. Right now you are probably not thinking straight, your hormone levels are making you impatient and anxious. Many people in this phase of the disease are looking for a "quick fix", but there really isn't one.
*A Doctor Who Will Work WITH You*
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If you have a doctor that will work with you and is open learning about the information you are learning about, take copies of articles with you for your doctor to read. I have had great luck taking Elaine Moore's Graves' disease book with me to my doctor. If you're doctor isn't up on the latest studies about antibodies and treatment options, or isn't receptive to the research you present, you may need to keep looking for one that does.
**LABS - ESSENTIAL For You To Learn And You CAN Learn It - All Of Us Were New/Sick At One Time*
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1) Lab Copies: From now on, you should get and keep copies of all of your lab work so that you can monitor your progress. What works really well for many of us is to write a little note about how we are feeling on the day we get our blood drawn, and when the results come back, we staple that note to our copy and file it away. ***This will prove to be a really helpful tool when it comes time to figure out what your optimum levels are*** - everyone is different and only you can tell when you feel your best. Don't let any doctor pigeon hole you into a range and tell you your numbers are normal. They may be within the normal ranges, but not normal for YOU.
2) If insurance is paying for your labs, insist on the following labs every 4-6 weeks at a minimum: Free T4 and Free T3, TSH. (Your doctor may want T4 and T3 as well. If so, you will then see for real how having the wrong tests makes for an innacurrate road map - that Free T4 is what the dose should be based upon and "Total" T4 (and T3) tests are often falsely elevated).
3) The TSI antibody test(thyroid stimulating immunoglobulins, also called TSH-receptor abs).is needed for a definitive diagnosis of Graves' disease. .
It should also be done before the final weaning off of ATD's to confirm remission.
Some also have the luxury of running this test yearly, to chart their progress, but this is not a requirement.
This is an expensive lab, so those without insurance can work with our more experienced members, and make the final weaning decision without the cost.( this edit brought to you by -Pam L- no insurance and still in remission going on five years now. Never had this test due to cost, but my severe TED was proof enoughof Graves'. We just have to be smarter. ;)
You can read all about antibodies here: http://www.suite101.com/article.cfm/graves_disease/54459. Please see Elaine's updated antibodies info. For example, recently the TPO abs (thyroid peroxidase ab) are now classified as "a marker that the thyroid is inflamed", whereas only a couple years ago they were thought to be "hypO" or Hashimoto's-like anti bodies. Many Gravesians have TPO's along with TSI's. Abs are important because they are the reason the thyroid is producing too much of a good thing. Heal the abs, heal the Graves'.
4) If you are currently taking or plan to take ATDs, your doctor should have ordered a WBC and CBC for your liver, and again at 4 weeks and 8 weeks. This will help identify if you have any liver problems from the drugs.
*No INSURANCE*
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If you are paying out of pocket, get the WBC and CBC before starting the ATDs, and again at 4 weeks and 8 weeks. Then get at least the Free T4 and if you can afford it, get T3 as well (Not Free T3, which is much more expensive). You can post your labs (with ranges) to any of the support boards (http://groups.yahoo.com/group/graves_support/ or http://www.mediboard.com/ are my favorites) if you need help interpreting them.
The following info is from various members on getting labs out of pocket:
1) If you order with the code 12345 (I believe) there will be a small discount: http://www.healthcheckusa.com/
2) HealthCheckUSA doesn't do the thyroid panel in NJ. I had used them before but no longer can.
For "no insurance" - I was able to get my labs done through http://www.directlabs.com - $106.00 for FreeT4, FreeT3, TSH (I think it's called Thyroid Panel II). I was surprised when it also included "Basic Chem, CBC W/Diff, Lipid, Thyroid II".
3) Link to Life Extension. I live in NY. Here and in NJ, healthcheck doesn't do mail order labs.
Elaine had given me this link. http://www.lef.org/ PS: Just a little note to add...I tried to get labs through DirectLabs
too...apparently they dont do NY either. Life Eextension was the ONLY one...FT3, FT4,
TSH...$90.00..and that included the cost for next-day UPS to ship back the
vials..
*REMISSION POSSIBLE - What Is Your Goal?*
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Now, what many doctors won't tell you is that is it possible for Graves' to go into REMISSION. Ideally, that should be your goal. You will know you have reached remission when you no longer have any of the antibodies for Graves' Disease. It usually takes about 2 years with ATDs. You can also do it using alternative medicine and therapies. Some combination of the two usually produces the best results. Since this is really a disease of the immune system, using a "big picture" approach will benefit you the most. This will include dietary changes, stress reduction, and possibly life style changes. Only you can decide which changes you can live with and how much you are willing to change.
By Pam B. PS. My website outlines in more detail the changes I have made and the alternative therapies I've chosen to help my body to heal. You can read it here: http://www.webmosaics.com/thyroid/ 2002
Original letter assistant= -Pam L- 2002
Additional edit for additional no insurance and antibody updates by Donna Francis. 2006
Please let me know when you find any links that are outdated, and we can try to fix them.
"Thyroid For Dummies", by Dr Alan Rubin gives solid information in an easy to understand language. He covers both hypo and hyper thyroid, including Graves' disease. Much more up to date that the "Thyroid Solution " we listed in the original letter. Dr Rubin has also proven to be a wonderful doctor for the patients we knew in our groups that had appointments with him.
http://www.amazon.com/Thyroid-Dummies-Alan-Rubin-M-D/dp/0764553852
Best book of all is "Graves' Disease, a Practical Guide" by Elaine Moore.
http://www.amazon.com/Graves-Disease-Practical-Elaine-Moore/dp/0786410116/ref=sr_1_1?s=books&ie=UTF8&qid=1292317862&sr=1-1
This is both a reference book and a book with personal stories of some of the patients we knew , ones that had stayed with our groups over a time period.
You will see some reviews stating this book is too hard to understand. Start with the personal stories in the back, and use the reference sections as each question comes up. All these years later, I still pull it out ..it's my Graves' Bible. ;)
Yes, there are lots of books out there, but do consider starting with these two first, so you learn the science first.
I'll think more on this as well and check back later.
If you can, post this in dairytech's group called Graves disease General that she started a couple of years ago. We put in articles, links, useful info for the 'newly' diagnosed and even 'oldies' like so many of those who come here and have had GD for years and finally are taking steps to be proactive with their thyroid health.
{{{hugs}}} :-)
P.S. This should go in as a separate thread all by itself and then we can add whatever to it. I didn't think Pam B's site was around anymore because one time I tried to access it and it was offline.
jjbrooks.. thanks for the encouragement. :D
Linda,
Boy have I opened a Pandora's box. Going back to find the best of what we gathered in our old groups, I'm finding many, many links I will need to updated, not just for this letter here, but in those groups for whoever finds them.
I agree this can be stashed in the reference area, but I think the best plan is to work out all the updates and new ideas here, and as a group we can have something even better.
Yes.. your right. I have been looking for PamB and only see her computer graphic stuff now. But I'm not giving up just yet. Her journey through the alternative treatment was so valuable for others to follow.
Kathy,
Excellent suggestion to add something concerning our eye disease.
When we did this originally we had to leave a lot on the cutting room floor, in order to not overwhelm new patients...but we really should have included the eyes.
Everybody,
Please feel free to make any and all suggestions, and do let me know of any bad link updates you find. This is not going to be fast or easy. LOL
Found PamB's old stuff on the wayback machine.
but as expected:
Look:
http://web.archive.org/web/*/http://www.webmosaics.com/
How about if someone decided so page though this, they select some of the best pages, we could work out some sort of intro with that?
Sorry.. wish we could edit our entries here..oh well..
I have found the book interview I've enjoyed due to some much info given as to what Elaine's book covers.
http://thyroid.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=thyroid&cdn=health&tm=29&f=22&su=p284.9.336.ip_p726.9.336.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.thyroid-info.com/articles/gravesbook.htm
Yes, it is over on about.com so be aware if anyone clicks through to their forums, the hypo forum members have never had cause to understand Graves' disease, though Mary herself tries.. Their is a separate hyperthyroid forum where Elaine has taken on the responsibility of helping out.
http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-thyroid2
Sorry 'bout those typos.
I've found the eye exercises I used, and contribute to helping me regain muscle flexibility. If it hurts, and it may.. just work as best you can at this point, and keep at it. If this becomes a semi-neurotic habit during regular times in the day, and always when having to wait for something.. all the better. For me, it was a matter of making them a habit, thus not forgetting.
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Courtesy of Jody Sprite
I do my eye exercises 3/4 times a day now, but when I first started them
and for about 4 months I did them 5/7 times a day. I would usually do
my first set as soon as I could focus in the morning. They don't' take
long at all. I always do them in the car too...when hubby is driving of
course! I had to give up driving last June 25th because of double vision,
blurred vision, no depth perception and extreme light sensitivity. I
started driving again on Thanksgiving Day, but only during daylight hours
as my night vision has not yet returned .
The Eye Exercises
1. Find a focal point on the wall or somewhere in front of you.
Look up HARD and hold for 5 seconds do a set of 5 of these.
Do the same thing to the left, to the right and down, always
hold for 5 seconds and sets of 5. In the beginning it is going
to make your eyes ache, but that is a GOOD thing, it means you are
stretching the eye muscles, and that needs to be done to limber
them up and get them working together again.
2. Roll your eyes SLOWLY, all the way around, trying hard to make
them work together. This may not be easy in the beginning, but
it gets easier as the muscles limber up. I roll them one direction,
rest for a few seconds then roll in the other direction.
I do this one 2/3 times a day also.
3. This one is one I work on, but have not yet accomplished yet ;-)
I use a pen, for me it is easier to have a white pen with a red
colored cap, hold it out in front of me at arms length, then
slowly bring it back towards the nose trying to cross the eyes.
As soon as you feel the eyes split or separate, start over. Do
this in sets of 5, several times a day.
I know it sounds like a lot of time, but it really isn't long at all and is
so essential to getting the eyes to work together again. The reason we have
the double vision is because our eyes no longer work in tandem. One of the
eyes can have a muscle that has *shortened* up because of the eye disease.
The TSI antibodies of graves attack our eyes muscles especially...just as
they attacked our thyroid and body muscles when we were hyper.
I hope these will help you. I started seeing a difference on my 8th day in
a lessening of the double vision.
I can see both points of view, so look at me as Switzerland here. ;)
This question does come up occasionally in groups, and I have followed those discussions. So from my memory...
Fact: No studies regarding cannabis and Graves' or TED. Thinking about it shows why, and I admit it gives me a giggle. In order to do such a study, they would need permission from the government to access legal cannabis. Then a test group and a control group, evenly matched as to current thyroid and antibody status, treatment choice, and a matching dose of the pot, same amount and same times per day. Now, since you wouldn't be able to do this out-patient because sending thyroid patients out to the streets with a pocket full of pot, doesn't seem like a good idea. ,Now your going to need a big hospital ward, a bunch of pot smokers and staff. Probably no lack of patients willing to give it their best..but it might be hard to staff. LOL
Okay.. so we have the no studies covered now.
Fact: Smoking pot causes a rise in blood pressure that lasts for two to three hours. Not a good thing.
Fact: Smoking is a known risk factor for TED, and smokers are known to have worse disease progression and outcome. This applies to second hand smoke as well. It's not only the smoke irritating the eyes but also the immune system. It's not a stretch of logic to wonder if pot smoke might have similar problems.
Fact: While pot does not seem to alter thyroid lab test accuracy, or directly affect our TSH, FT4 or FT3...from what I've been able to find, pot will alter how we feel side effects or lack of side effects of other drugs. I'm thinking of beta blockers or mood altering medications. Very easy to have additional problems getting to a steady, truly helpful dose of these types of meds, much less have a clear ability to judge the fine tuning of proper thyroid levels to put us at NORMAL for each of us. That NORMAL is what we need to heal.
Fact: Cannabis plants do have a steady pest, the horrid spider mite that sucks the life out of them if not controlled. In any production setting, the mite population is going to be much higher than a plant in the field, with natural mite predators. Growers must use pesticides. Less harmful and most easily available will be synthetic pyethroids. ( nasty stuff) ..
http://docs.google.com/viewer?a=v&q=cache:x4sv0AroW2gJ:www.beyondpesticides.org/pesticides/factsheets/Synthetic%2520Pyrethroids.pdf+synthetic+pyrethroids&hl=en&gl=us&pid=bl&srcid=ADGEESjBUAjGpWepoEYPEz8wdPToexLADnKtu7QxhdlqyhAPafl2ks7tyDpZYbJTn6Vws_dpLeCc_aZrCIg0rBzI981bQ5rli0v6vAWi21yVjZ9bvlYH4wYwRaWqJSYEkzXL1x65Silf&sig=AHIEtbRf7o2UWbSMmw445kgTD31k8kggeg&pli=1
this is a google doc, but very accurate info, so worth the loading time.
But those are more expensive. Most growers will use much worse poisons. Possibly one of the environmental toxins that caused Graves' in the first place.
Fact: Even here is liberal Oregon, where patients can obtain medical marijuana cards , and doctors / nurses associations are in favor of, Graves' is not one of the conditions covered. Hey.. I looked, leave no stone unturned was my motto.LOL
Fact: Marijuana is addictive, despite what some may say, and very much so in long term users. Difficult to get through the withdrawals, aggression being one of the symptoms of withdrawing. I came of age during the sixties as did my friends, so I'm not talking from lack of experiences.
But you know what? If the patient is currently hanging on by a thread ( and I say this as a past thread holder) don't be yanking his thread away. All things come in time. Let's get some good, steady NORMAL for him thyroid levels going, and hold them steady for awhile. Then, slowly backing away from the pot will come naturally.
Many Graves' patients have been self medicating with a variety of things, for years and years.. while the true nature of the problem remained undiagnosed. Average time to diagnosis I saw long ago, was seven years ! Think if you had been ill for so long and had found ways to cope and try to carry on despite being sick.
Great question that too often goes unasked. You two have made some great progress so far. (((hugs))) If he says it helps him right now, trust him.
http://books.google.ca/books?id=z8DCXgLROHgC&pg=PA136&lpg=PA136&dq=Thyroid+eye+disease+#v=onepage&q&f=false
If you click on the little red book on the top right hand corner...it will start from the beginning