Advertisement

Jump to content


Photo

Things Other Graves Patients Want Newbies To Know


  • This topic is locked This topic is locked
4 replies to this topic

#1 Jeffrey Roberts

Jeffrey Roberts

    Member #1 Publisher

  • Publisher
  • PipPipPipPip
  • 149 posts
  • Country:United States

Posted 25 November 2008 - 03:02 PM

Advertisement
Some Things That Would Have Made My Graves Journey Easier To Cope With

10 THINGS THAT WOULD HAVE MADE MY GRAVES JOURNEY EASIER HAD MY ENDO ONLY…

1) Explained to me when he wrote me the prescription for an ATD that this course of treatment will require a reduction in medication as the meds begin to work until we find a dose that keeps my levels in the normal range.

2) Scheduled my appointments after initiating ATD therapy at 4 week intervals until my levels stabilized.

3) Explained to me that I should become familiar with hypo symptoms and be on the lookout for any hypo symptoms if they appear before my next scheduled visit, and to call the office for labs if I experience any hypo symptoms.

4) Listened to my complaints during my appointments and tried to find out why I was having these symptoms, rather than blowing me off and telling me that my symptoms were “not thyroid related.”

5) If I had an Endo that kept current on thyroid/Graves research and treatment, then he would have known that while on ATD therapy, the TSH test is not the best test to use to evaluate my thyroid status. The FT4 test is the best test to evaluate my thyroid status while on ATD therapy for an autoimmune thyroid disease.

6) Told me to avoid high iodine foods due to their ability to “upset the apple cart” and stimulate thyroid hormone production.

7) Told me to let my dentist know of my Graves disease condition and novacaine might exacerbate my hyper symptoms and give me serious heart tachycardia.

8) Stressed the importance of creating a healthy lifestyle…eating right, getting proper rest and utilizing stress reduction methods.

9) Told me that long term ATD therapy is possible as long as there are no adverse reactions to the medication.

10) Listened to my complaints, and taken the time to explain the 3 treatment options, the ramifications of each of the treatment options and offered me the knowledge I needed to make an informed decision regarding treatment.

11) Most importantly...had my healthcare provider chosen to work with me, to give me the knowledge and tools to empower myself to deal with this disease, I feel that my first year of Graves would have been much, much easier to deal with. I resent that education of the disease is not offered, when we are diagnosed with a lifelong disease. I feel that Graves education should be required as part of treatment protocol.

12) Followed her own guidelines and not the HMO's.

13) READ MY COMPLETE FILE before offering and giving me treatment!!!

14) Spent more than 15 minutes per session with me!

15) Ran the antibody assays right at the begining instead of waiting.

16) Had my endo only...Understood that putting a patient on a dose of ATDs that is too high for them, can cause a reaction that can be confused with an allergic reaction! It does not, always, mean they cannot take ATDs.


Advertisement

#2 Jeffrey Roberts

Jeffrey Roberts

    Member #1 Publisher

  • Publisher
  • PipPipPipPip
  • 149 posts
  • Country:United States

Posted 25 November 2008 - 03:02 PM

This is just a short over-view of Graves' and what I wish someone had told me when I was first diagnosed. (from HipCzech)

Hyperthyroidism is a condition where the thyroid is overactive and producing more thyroid hormone than your body needs

It is like your body is in permanent overdrive, all of your systems are working double-time in a way

your heart is beating too fast
your digestion is working so fast you don't absorb nutrients from the food you eat
the muscles waste away
the body trembles
and many other symptoms

Graves' disease is a condition in which there are antibodies being produced that target certain areas of the body (usually the thyroid, sometimes the tissue and muscles of the eyes, sometimes the skin of the shins)

When these antibodies begin attacking healthy areas of the body, you get hyperthyroidism (some folks get graves' ophthalmology, and some pretibial myxedema)

The treatment that a lot of us think is best for this disease is antithyroid drugs (or ATDs). These medicines quiet the thyroid and slow down the production of thyroid hormones, and reduce antibodies.

You do NOT need a thyroid scan to diagnose Graves' (the dye used in these scans can cause MORE antibody production). The test that most folks like the best is a TSI test and a TPO test. These are antibody tests.

If the TSI is positive, then Graves' is the diagnosis. If not, then it can be hyperthyroidism caused by other things - and usually this will pass in just a few months (and with proper treatment to help make you feel better).

Treatment with a betablocker like Inderal (or propanolol) will help the symptoms of tremors and rapid heartbeat, and treatment with ATDs (like Tapazole or PTU) will help stop the thyroid from overproducing and lower the antibodies.

Doctors like to treat Graves' with radiation or RAI - this destroys the thyroid - makes us premanently hypothyroid usually, and can make eye disease worse, and cause other long-term problems.

However, studies have shown that long-term use of ATDs can succesfully result in remission in Graves patients. Many patients have chosen this treatment option.

There is no quick fix for Graves'. It takes many months and sometimes years to reach remission.

The other treatment choice is removal of the thyroid by surgery. Again, this usually leaves the patient permanently hypothyroid.

If I were at the beginning, I would:
#1 have proper testing - TSH, TSI, Free T3 and Free T4 (WBC and liver function tests are important at this point to get a baseline for future ATD treatment).
#2 If the TSI is positive, and I have Graves', I would find a doctor who will treat with ATDs long term to help me reach remission.
#3 Make very healthy diet and lifestyle choices to help me weather the journey of Graves'.
#4 Not have any radioactive tests - but get an ultrasound of my thyroid
#5 Get the book - Thyroid for Dummies and The Thyroid Solution - they are easy to read for the Graves' mind that has a hard time concentrating.
#6 Read the Thyroid 101 thread on this site, slowly and carefully, until the information begins to sink in.

Welcome to the board.

remember:
knowledge is power
a sense of humor is a wonderful thing!!
Doctors MANY times get it WRONG - sometimes, we have to fight for the proper treatment

#3 Jeffrey Roberts

Jeffrey Roberts

    Member #1 Publisher

  • Publisher
  • PipPipPipPip
  • 149 posts
  • Country:United States

Posted 25 November 2008 - 03:02 PM

The 10 Things Your Doctor May Not Have Told You About Graves’ Disease

<Printed with permission from Elaine Moore>
http://thyroid.about.../aa10things.htm

Important Information From Elaine Moore, author of Graves’ Disease, A Practical Guide Related Resources

1. Graves’ disease is an autoimmune disorder. In GD, the immune system produces thyroid autoantibodies that react with a protein known as the TSH receptor. TSH receptor protein is found on thyroid cells, eye muscle cells and also the dermal cells of skin tissue.

2. Antibodies known as stimulating TSH receptor antibodies or thyroid stimulating immunoglobulins (TSI) are responsible for GD, thyroid eye disease (Graves’ ophthalmopathy) and also the skin condition known as pretibial myxedema. In GD, TSI react with the TSH receptor on thyroid cells, acting in place of the pituitary hormone TSH. This causes thyroid cells to produce and release excess thyroid hormone, causing a condition of hyperthyroidism. The TSI test is used to diagnose GD. According to Dr. Joseph Fisher, in a recent Medscape article, the RAI-U test is no longer necessary or desirable for diagnosis.

3. GD is unique to everyone. Patients may have only one major symptom or they may have several different symptoms. Predominant symptoms can change over time, and their severity can vary, increasing during times of stress. GD may spontaneously resolve, follow a lengthy course with variable periods of waxing and waning, or it may progress rapidly.

4. Graves’ disease is caused by a combination of genetic and environmental factors. Patients with GD have a certain combination of genes that make them susceptible to disease development when they’re exposed to certain environmental triggers.

5. According to the College of American Pathologists, stress is the major trigger for GD. Other triggers include excess iodine, estrogens, and certain chemicals, such as aspartame. Dietary iodine in excess of 150 mcg daily can trigger GD in susceptible people. The average American diet provides 300-700 mcg of iodine daily, and fast food diets provide more than 1,000 mcg of iodine daily.

6. People with autoimmune thyroid disease (AITD) may have either hypothyroidism or hyperthyroidism depending on the specific thyroid antibodies that are predominant at the time. People with AITD generally have several different thyroid antibodies. When TSI predominate, patients become hyperthyroid. When blocking TSH receptor antibodies predominate, patients become hypothyroid. Most people with GD have an initial period of hypothyroidism, which may be subtle or overt. And 20% of GD patients move into hypothyroidism, even without treatment.

7. Treatment for GD is designed to reduce blood levels of thyroid hormone. Surgery and Radioiodine accomplish this by reducing thyroid tissue and causing hypothyroidism. Anti-thyroid drugs (ATDs) and alternative medicine work by blocking iodine absorption and reducing thyroid hormone production; in addition, they help the immune system heal and inhibit thyroid antibody production.

8. Remission is both possible and predictable. Remission occurs when the immune system stops producing TSI. Before patients are weaned off anti-thyroid drugs, they should have TSI levels near <2% activity. Factors known to cause a relapse after remission include high TSI titers, large goiter and cigarette smoking.

9. People using ATDs must be monitored with FT4 and FT3 levels. TSH can take many months to rise and can be misleading. While patients can achieve remission within several weeks, most people achieve remission within 12-18 months. For a small number of people remission remains elusive and patients remain on low doses of ATDs for many years, a common practice in Europe.

10. Diet and Lifestyle changes do make a difference. Studies show that reducing dietary iodine, adding goitrogens to block iodine absorption, incorporating stress reduction techniques, and avoiding chemical triggers all promote remission. Patients with GD must also avoid novocaine, antihistamines and ephedrine.

#4 Jeffrey Roberts

Jeffrey Roberts

    Member #1 Publisher

  • Publisher
  • PipPipPipPip
  • 149 posts
  • Country:United States

Posted 25 November 2008 - 03:03 PM

Open Letter to the Newly Diagnosed Graves' Patient
By Pam B and posted here with her permission.

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. 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:



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.

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. 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.

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.

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.

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.

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. Every several months or so, get your antibodies done. . 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.

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).


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. 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. 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/a...p?ProductID=369

5.) Add Omega 3 foods or supplements (flaxseed oil, fish oil, or omega 3 eggs) to your diet. This will help your eyes if you are feeling any symptoms of thyroid eye disease.

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. 


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.

Pam B.

 



#5 Jeffrey Roberts

Jeffrey Roberts

    Member #1 Publisher

  • Publisher
  • PipPipPipPip
  • 149 posts
  • Country:United States

Posted 25 November 2008 - 03:03 PM

These are my favorite links to good, accurate information, they are in no particular order other than the support groups are listed first.

This board, mediboard is full of wonderful caring people and a full archive of information.

If you would feel more comfortable in a more private type of group, I also am active in the two following groups. These are e-mail groups and can be set up to read on site or receive the daily digest <25 messages in one 1 e-mail.> These are closed groups, membership is required but is kept private and is done very quickly. They can be found at:

graves_support
http://groups.yahoo....graves_support/

Atomic Women at
http://groups.yahoo....?yguid=11150967

These groups have extensive archives with their own search engines for each group and all three of these groups have folks that help you jump start your education journey of dealing with Graves Disease or thyroid disease.

Information site I recommend:

Elaine Moore’s web site and you can contact her directly from this site as well in the above groups.

http://www.elaine-mo.../gravesdisease/



On all of these web sites you will find links to other informative groups.

The books I recommended on the show were Elaine’s book Graves Disease; A Practical Guide by Elaine Moore.

Personally I feel this book to be the number 1 book for all thyroid patients not just graves patients. Whether we have autoimmune thyroid disease or thyroid disease that, in time, will rectify itself the symptoms for hyperthyroidism and hypOthyrodism are the same.

The second book I just bought <thanks to Doris> and love the simplicty of it is Thyroid For Dummies by Alan Rubin MD . I haven't finished all of it yet and have come across only one thing I disagree with him on is he still thinks RAI is a viable treatment for us but in his practice, ATD's are his first choice of treatment. A nice perk for those who may live in his area and can get into see him...maybe?

The third book I recommended was The Thyroid Solution by Dr. Ridha Arem . Though I personally disagree with his ease in recommending radio iodine treatment, his explanation of the mental and emotional aspects of thyroid disease, especially when not being properly treated or monitored explains so much to those of us who live with the devastation it sometimes causes in our lives. It is also an excellent book for our family members to read.

I’ll close this post and begin another one adding the revised extended symptoms list and top reasons why not to have RAI in this same thread you so don’t have to go searching.

Every person needs to make their own treatment choice but I and everyone in these groups knows and understands the reasons for taking your time in making any permanent options. Learn the pros and cons of all treatment options; ATD’s, anti thyroid drugs should be started immediately on hyper patients along with possible a beta blocker, this will help bring your levels into normal range where you can research easier, think more clearly and make an informed decision. Just always REMEMBER this is YOUR choice, NOT your doctors and you need time to make this choice.

 







LivingWithGravesDisease.com is for educational purposes only and should not be used as a substitute for consultation with your health care provider.

The documents in this website are the sole property of LivingWithGravesDisease.com. They may not be redistributed or sold for profit in ANY WAY without consent of LivingWithGravesDisease.com. Permission is granted for the copying of these documents ONLY for one's own personal use or redistribution to others on a strictly informational and NON-profit basis, provided that: A.) these documents are not edited or modified in any way, B.) LivingWithGravesDisease.com is not held responsible or liable for its content and C.) this notice and the disclaimer below remain attached in their entirety.

© Copyright 2000-2014 All rights reserved.

About Us | Contact Us | Advertise With Us | Disclaimer | Terms of Service