Graves' Disease Resource Page

SITE MAP

  E-mail URL to a friend

LIVING WITH GRAVES' DISEASE

1.  SUPPORT    * * * Information for families, friends, and associates--(new window) * * *

2.  INFORMATION

3.  FINDING THE RIGHT DOCTOR

4.  SELF-CARE

5.  OPTIMIZING THYROID REPLACEMENT HORMONE  (New Window)

The result for the Graves' Disease patient may be that emotional support systems disintegrate at the time they are most needed.   Support groups can make all the difference; but unfortunately, there are few available--though the National Graves' Disease Foundation does have meetings in some cities (check the website for details).

For me, talking to others with this disease through the online support bulletin board sponsored by the National Graves' Disease Foundation was crucial for getting through the hardest times when I felt nobody else in my life understood.  

These controls may be an unwanted element for people who would rather see "free speech" at the expense of information that's credible and backed by scientific evidence and current medical standard of practice.   Other forums are available, where alternative treatments are discussed and people are free to say anything--whether it's correct and helpful, or erroneous and misleading--or even dangerous.

Besides support groups, many people need to seek professional guidance--including individual and family counseling, and treatment by a psychiatrist who specializes in thyroid imbalance.  Because of the prevalence of neuro-psychological symptoms  that remain following treatment for Graves' Disease, many people need this kind of support, and often are  helped by anti-depressants or other necessary prescriptions.  Don't feel ashamed if you are one of them, since you are not alone, by any means.

Back to top

2.  INFORMATION

It's important to become informed about this disease in order to make your best personal choice of treatment options, and to help you live with this disease in the best way possible.   Developing a solid understanding of all the issues and choices related to Graves' disease treatment will help you talk to your doctors and understand what they're telling you, as well as help you know what questions to ask.  It will also help you know when you need to get a second opinion, or find a different doctor.

Where do you get reliable information on Graves' Disease?  First, read some good basic books on thyroid disease (a list follows).   You can also order informational bulletins--or receive a selection of free ones with membership--from the National Graves' Disease Foundation.   Spend time on the NGDF Support Bulletin Board and read as many posts as you can.  If you have a specific topic of interest, you can do a search on this subject--or ask questions there.   Then, talk to your doctor about any further questions you might have--since your doctor knows your entire health picture and might have good reasons for some of the treatment recommendations in your case.  If you aren't satisfied with the answer your doctor gives, always get a second opinion--and more if you feel the need to.

Recommended Reading List:

3.  FINDING THE RIGHT DOCTOR

Generally speaking, most people should be treated and managed by an endocrinologist who is experienced in treating thyroid disorders (some treat mostly diabetes patients).  A number of  internists also have the necessary experience & training; and in some cases a general practitioner who is experienced and who keeps up on the latest thyroid topics can be good.

There's more to the right doctor than his experience and training, however.  You need a doctor who takes the time to listen to you, and who is willing to find out why you're having a particular symptom.  While not every complaint we have is going to be thyroid-related, a good many of them are.  If your doctor responds to all your complaints by telling you this isn't thyroid-related (simply because your "numbers" are in the "normal" range), you probably should find another doctor.  If your doctor doesn't take your symptoms seriously and try to find out why you're having them, he's not going to be of any help to you.  If your symptoms truly aren't thyroid-related, you still need to find out what's causing them.

Many people live in areas where there isn't much to choose from in qualified endocrinologists, or don't have a good choice in their insurance plan.  I suggest that it's probably worth the drive or the out-of-pocket expenses to find a doctor you're happy with--if this is at all possible.

If we ask the same question of 10 doctors, we might get 10 different answers. This should be a good clue that we shouldn't accept everything we're told by a particular doctor.  We've been conditioned to think that doctors are (or should be) infallible.  It's important to realize that doctors aren't god-like creatures who always have the right answers.  If your doctor acts like he is, it's a good sign to move on.

Where do we begin the search for a new doctor?  That can be the difficult part.  If possible, talk to other people and find out who they like.  People often know who the doctors are who listen, and generally it's more difficult to get an appointment with these doctors.  You'll probably find it's worth the wait.

Another method is to call some endocrinologists' offices and ask their staff whether the doctor is good at listening to patients and trying whatever is needed to make them feel better (such as adjusting thyroid hormone replacement, or whatever you're having trouble with).  If the response to this is less than a warm-hearted YES, then you probably haven't found the right one.   Some people request an interview with the doctor before making an appointment.  If the doctor isn't willing to grant one--again, you probably need to keep looking.

Sometimes when we can't change doctors--for insurance or geographic reasons--it's still possible to get the doctor to work with us better, by the way we educate ourselves and by the way we communicate with the doctor.  For instance, instead of just accepting the statement that your problems aren't thyroid related because your numbers are "normal", we can ask the doctor to adjust our levels within the normal range or try a different type of replacement hormone, to see if that helps.  If we have done our homework and can talk to the doctor somewhat on his level, he's more likely to go along with what we want to try.

When it comes right down to it, we are the only ones who can make certain we're getting the best possible treatment--by not accepting the status quo when we're not feeling as well as we'd like to be.

Back to top

4.  SELF-CARE

This may be a good time to reexamine your priorities in life.   At least temporarily, you'll probably need to make some adjustments in your responsibilities at work and at home.   You may need to have your doctor write a letter to your employer explaining that you're not able to perform at your previous level for a period of time.  If you choose to do this, make certain your doctor doesn't say something that might be used against you--for instance, if you were up for a promotion with increased responsibilities and really wanted the job.

If after treatment you still don't feel capable of doing everything you were doing before, consider making some major changes.   Find a job that's less stressful and demanding, if that's a problem.  Assign more of the household duties to your children or spouse.  If you're a perfectionist, lower your expectations for yourself, at least until you feel more able to cope.  Let someone else volunteer to do the work this year for that organization or family dinner.

Prioritize and try to find balance in your life.  Eat right, get the rest you need, and (when your doctor approves) begin an exercise program to rebuild muscle you lost while hyperthyroid, and to help with metabolism and weight control.  It will take some time once your thyroid levels are stabilized to feel really good again, but you can help it along by giving your body what it needs to heal. 

So much of what happens with our Graves' Disease is completely out of our control, even though we do all we can to help ourselves.  Many people are helped by focusing on spiritual issues at this time. 

We're often told to be patient, and that's difficult to hear when we're feeling lousy.   Though it may take much longer than we'd like, with proper treatment we do feel much better again, and life can still be good! 

Back to top

* The information in this web site is for educational purposes only and is not providing medical or professional advice. It should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional medical care. If you have or suspect you might have any health problems, you should consult a physician.

You are visitor number

since 2004