Several hundred patients weighed in with their advice, and there were so many incredible responses that I wanted to share some of the highlights.
First Things First: Stay Calm
A number of people said that the first, most important thing is this: "don't panic!" One thyroid patient said, "What good are you going to be scared to death like I was? So calm down first, and breathe!"
Good advice. Staying calm and doing your best not to get stressed is not only helpful to your mindset, but it's also healthier for you!
Read Books and Do Your Research
Many people mentioned how important it is to research, read, and bone up on everything thyroid right from the start. And that means staying up on the latest thyroid news. One thing you can do right now, if you're not already a subscriber, is to sign up for my free weekly thyroid newsletter here at About.com
One contributor suggested that new patients "dig deep, insist on thorough tests, and explanations, ask lots of questions, and if the doctors won't answer questions or order key tests, find a different doctor." Another added: "Don't depend on your doctor as your sole source of knowledge."
Another contributor noted that "There is a great divide in treatment and you will need to be aware of the seeming conspiracy to only run certain tests, to only prescribe certain meds and to minimize the devastating health issues we suffer!!" (Don't know about the controversies? Start by reading about the TSH Reference Range Wars now.)
Another reader felt that it was crucial to be proactive about research. "There's always something new out there and I personally learned so much that my own doctors never told me. Learning new things can help you bring the attention to your doctors. We have to be our own advocates!"
My books were also mentioned my a number of contributors: "Right off the bat, buy a Mary Shomon book." Another reader wrote: "I've had thyroid disease for almost three years now and in those three years I have had so many friends who have been diagnosed or suspect thyroid disease as well and honestly, the very first thing that comes out of my mouth is 'Please read Mary's book Living Well With Hypothyroidism!!
Learn How to Deal With Doctors
Knowing how to deal with doctors, and find the right doctor, was a popular theme.
One reader said "Find an integrative/holistic medical doctor if you can, so that s/he will be open to tests beyond TSH and meds other than synthetics."
Another reader wrote: "Keep going until you find a doctor who actually listens to you! There are good doctors that are competent and great doctors that are competent AND listen. They are worth waiting for."
Educate yourself, find a doctor who listens, trust yourself to know your own body and what your "numbers" mean to you - NEVER give up finding your health truth and when in doubt about what might not seem right, question your thyroid!"
Another reader said it quite plainly: "Don't settle for bad doctors." (Not sure if you have a winner? Here are the ten signs that you need a new doctor. )
Whether or not you need an endocrinologist was also a popular topic. One reader shared: "Be open to the idea that the most informed doctor about your condition is probably NOT an endo! Look for doctor recommendations from other sufferers." Another said: "Don't assume you need an endocrinologist. I have had much better luck with PA's (Physician's Assistants). The important thing is that they are informed and open-minded and will listen to you!"
(I've written about this issue in my article: Why Every Thyroid Patient Doesn't Need an Endocrinologist.)
Another reader suggests: "Be your own advocate and don't just settle for any doctor. I was going to an endocrinologist who I hated and was seeing no change, had someone else recommend their doctor who I went to and am now doing great. I have energy, lost weight, and am just feeling great!"
Finally, patients say that it's crucial that you partner with the right practitioner: "It is a fight for your health and well-being. Find a doctor who will face the battle with you, not against you." And "Don't ever stop fighting for your health! If your doctor doesn't treat you like a person not a lab result find another one!"
Need a new doctor? Read How Thyroid Patients Can Find the Right Kind of Doctor for Their Thyroid Care.
T3 and Natural Thyroid
Many patients mentioned the benefits of T3 and natural desiccated thyroid treatment in addition to or instead of their T4-only thyroid medication. One patient wrote: "Twice a day medicine, and always T3!!!!" Another said, "Take T3 along with T4."
You can learn more about T3 and natural thyroid in Thyroid Patients: Do You Need T3 or Natural Desiccated Thyroid?
Get Tested, and Keep Track of Your Results
Getting tested regularly, and knowing your results, was a popular theme.
One patient wrote: "Get your levels checked regularly. Don't procrastinate getting bloodwork."
Another said, "If you have to.. self test at labs to get the bloodwork done you need!! YOU are valuable!" (Read more about self testing for thyroid levels now.)
One patient said "Ask for copies of reports, question anything you don't understand." Another added: "Get your lab numbers!!! Don't just go by, 'you're fine and within the margins.' GET YOUR NUMBERS!" A third suggested: "Get copies of all your lab work so you can see what they are and make notes on them how you felt at the time they were taken! Some doctors will say the labs are in the normal range when they are actually 1 or 2 higher or lower than normal! Always get copies so you can see for yourself!"
Some good advice: "Keep a spreadsheet with all your lab values. You can't possibly get a picture of your blood test results if every test is on a separate sheet of paper. (And your doctor won't believe it when you hand him a copy! He will KNOW you are serious. Graph the numbers - changes over time can be important diagnostically."
Taking Your Medication...And Take It Correctly
Taking your medication was a popular topic of discussion.
One contributor said: "Take your meds! I've got family members (cousins, cousin in laws) that have been diagnosed with thyroid problems and they won't take their meds! I don't understand why they won't but yet the complain of all the health problems they have!" (Sound like anyone you know? Read When Patients Won't Take Their Thyroid Medications.)
One patient said, "Don't miss a day of your meds!" Another added: "Don't forget to take your meds!!!!! I was 18 when I was diagnosed and I thought no way would a little pill make a difference. After my thyroid was removed I gained 100 pounds in a year and almost died from not taking my meds!!" (Find it hard to remember your medications? Read 10 Creative Ways to Remember to Take Your Pill.)
Several readers talked about knowing how to properly take their medication. "I wasn't told about not taking calcium within 4 hours of taking calcium (and I took my meds in the morning) therefore I was still gaining until I finally researched and found this out. I take my meds at night so they are fully absorbed into my body."
Another wrote: "Don't take your meds in the morning with calcium. Learned that recently after 5 years of doing it the wrong way. **Ugh** I take mine at night now."
And another explains: "Make sure you take your medication first thing when you wake up and don't eat or drink, take vitamins, or any other meds for a whole 60 min. Don't even sip that morning cup of coffee until it has been an hour! Thyroid meds don't work if you don't stick to this."
Is all this news to you? Read about Coffee, Calcium, and Your Thyroid Medication.
Another helpful tip: "Don't throw away doses of thyroid medication if another dosage level is recommended unless it expires. You never know when your levels will change again and you can use the meds you already have on hand."Get Other Tests You Might Need
On reader suggested: "Get iodine levels and adrenal glands tested too." This was seconded by another reader: "Make sure your adrenals are working properly before you get thyroid treatment! If a doctor won't test you for adrenal problems, find a new doctor."
Another reader suggested: "Also have them check for other vitamin deficiencies like D that can contribute to better thyroid health." (Read Why is Vitamin D So Important for Thyroid Patients).
Many readers commented on the various dietary changes that help them feel well, including "Stop eating wheat and cut way back on all other carbs/sugars," "avoid artificial sweeteners," "eat organic as much as possible," and "don't eat soy."
It's interesting to note that the gluten-free/wheat-free diet was also a popular recommendation!
Patients felt that support was crucial right from the start.
One said: "Have a good, understanding support system in place for those days you will absolutely need someone to lean on."
Another suggested: "Educate your family, they are usually your best supporters." (Need help getting your family and friends up to speed? Read When Your Family Member or Friend Has Thyroid Disease: An Open Letter to the Family and Friends of Thyroid Patients.
Find a support community of other thyroid patients who are in all walks of their struggle. It is an on going process and life will never be as we expected it to be, but with a community to turn to your experiences will not be alienating."
Finally...Be Patient, But Don't Give Up
One patient said: "You are not alone. You are not crazy. Never give up and never give in."
And finally, one thyroid patient sums it up perfectly: "Learn to have a lot of patience. This is a long journey without any quick fixes. Don't go with the first doctor that you find, and if there is a long waiting list to be seen; that's a good sign that he or she is the best. Don't be upset or disappointed with yourself when things don't go as planned. Learn to love the person looking back at you in the mirror, because none of this is your fault. There are going to be times when you feel sad and tired...give in and rest on these days. Take full advantage of the days you feel good; you will pleased with the rewards at the end of the day. And most of all, don't give up or settle."