I’ve been diagnosed with Graves’ disease since 2000. I was told when I was diagnosed that the anti-thyroid drugs would take care of things. They didn’t. Then I was told that I would do the RAI (radioactive iodine) to kill off my thyroid, then I would take one pill and everything would be fine. For me, it also wasn’t that simple. I have had many times over the last decade plus where I felt like there was no hope and things would never get better. I was wrong, there is hope and there is always a chance for things to improve.
First thing I’d tell anyone newly diagnosed with any thyroid disease including thyroid cancer, is you are no longer going to be the same. You need to give yourself time to mourn your old life and your old you. No one ever tells you this, but I will. You will go thru the stages of grief just like you lost a loved one, denial will figure very strongly for awhile, and you will think you can get back to where you used to be. You will NEVER be like you used to be. Don’t despair though, because you can get to a new you that will have you be just as happy if you keep searching for answers and keep pushing on.
Getting answers that will help you live a better and healthier life takes time and patience. Everyone is just a little different, so you will need to research what has helped other people get better and then find out if it’s something that is a possibility of helping you. Don’t be misled by too good to be true claims of curing your thyroid disease, since a lot of them are scams at best and harmful to your health at worst. If there is a group of people insisting that eating this or not eating that is the ONLY way to go, steer clear of those people. Thyroid disease is absolutely not a one size fits all disease. You will have to find out for yourself what works for you and if something does not work for you, don’t feel like you’ve failed. Finding out what doesn’t work is also valuable information.
Some of the things I’ve done in my search for answers to my health include trying different diets or eliminating different foods. I’ve been keeping a food diary for the last several years. In it, I write down what I eat each day, any weird or unusual symptoms I have and what time they happen at and then each week I go back and see if I can detect any patterns. That has helped me find some new food sensitivities and allergies that I did not have before.
I’ve also tried various diets. Gluten free is one that is very popular right now. Some people who have thyroid and autoimmune disease develop celiac’s disease, and for them, avoiding gluten helps within a few days for them to feel better. Keeping a food diary can help you figure out if that piece of bread you ate is tied to the stomach issues, or extra fatigue. For me gluten free made me feel worse, not better, that plus a biopsy and blood test for celiac’s confirmed that is not my issue personally. (I know there is a small group of people who feel that gluten is the evil of the world and everyone should avoid it, but I am not one of those people- to each their own). I also tried avoiding dairy in my diet. I did find that having smaller amounts of dairy, and staying to things that are low in lactose seem to help my digestive system, so that was a plus for me. I also went on a low glycemic index diet (see chart for examples below) at the advice of my doctor, which basically means eating like a diabetic. This one also helped me personally gain energy and avoid mid day slumps, so another victory. Some people find they are sensitive to additives in food and cannot eat much processed, this is another thing to try to see if it will help you feel better. Still others find they are allergic to things in red meat or seafood. Keep a food diary, eliminate one food group at a time for a week each and see where your personal triggers are. This is one good way to start on the road to feeling better.
Another thing is to keep on top of your lab work. Make sure your thyroid levels are within optimal levels. Just because your thyroid levels are within the broad definition of normal, doesn’t mean that they are at their optimal. I suggest keeping a lab journal as well, get copies of all your labs, write down any medicine you are on with dose at the time and any symptoms you are having. Over time you will come to figure out where your new “normal” is, where your optimal is.
Next make sure your various hormones and vitamins are where they are supposed to be. Get a full panel done to check your male or female hormones to make sure they are where they need to be. Women can have their female hormones pushed out of normal by their thyroid and men can have their testosterone levels fall when their thyroid levels go off optimal. Also get your basic vitamins and nutrients checked. Vitamin D, magnesium, calcium. potassium and iodine levels are important to also be optimal. If any of these are too low or too high it can throw things off even further. A lot of times getting them checked can give you and your doctor a good idea if they need to be supplements to help you feel better.
Sleep is another very important thing that can be disrupted when you have thyroid issues. The tiredness, fatigue and brain fog that comes along with thyroid being off, can overshadow sleep issues, to the point you do not know if you’ve developed any sleep issues. If you are constantly tired and your thyroid levels, diet and other things are ok, get a sleep study done. I resisted this one for years. I don’t snore according to my husband, so I can’t have sleep apnea. It took me fainting one day, plus several month of tremors, brain fog and vertigo where I could not walk a straight line to finally get me to get my sleep study done. When they found the sleep apnea I wasn’t happy. I was happy with the HUGE amount I felt better using the CPAP. That has given me one of the biggest boosts in energy and ability to feel better.
My point is, that getting back to a new healthier you won’t be instant for most people. You will have to put on your detective hat and start eliminating things and trying others to find out what your body personally needs. I am so much better now than I was last year and better last year than the year before. I keep searching for answers and keep pushing to get good care and it’s helping to keep me going more than I ever though. Don’t give up!