January is the Thyroid Awareness Month and this is a topic of particular interest to me, because being affected by a thyroid disease myself; I know firsthand how challenging it can be not to know exactly what you have while being told by your doctors that "all is fine"or "I cannot find anything wrong with you", and that "all your symptoms would most likely soon disappear". Yeeaah right! Like as if by magic.
It is estimated that nearly 200 million people in the world suffer from some sort of thyroid disease. Yeeep ! You read that right, it's not a mistake and sadly this staggering number is incrementing every time more and more. I suffer from Hashimoto's which is an autoimmune condition in which your own autoimmune system attacks the thyroid, as consequence, causes an array of debilitating and usually overlooked symptoms. It might take years before a savvy doctor would come up with a proper diagnosis. That's why today's post is an interview with Renate Hoornstra about this condition and what you can do if you are in need of some answers.
Renate, can you tell us a little bit about your background and why you became an advocate for thyroid conditions? What made you get involved?
When I was 20 years, I went to the doctor with major symptoms of hypothyroidism, but she dismissed my symptoms saying that some people are just tired already when they wake up and that I just had to accept that. So I did that and it took almost 20 years and several miscarriages to get diagnosed. Then I got prescribed the standard medicine for hypothyroidism (levothyroxine) which put my blood levels in the normal range, but did not relieve me from my symptoms. I found out on internet that there is a medicine that works better and is also natural (natural thyroid hormone). After a long search I found a doctor who works with that and got rid of these symptoms. It is now my mission to prevent patients from unnecessary suffering by educating people about the alternatives to the standard medication. I'm a volunteer for ThyroidChange and have a Dutch and Italian website (I live in Italy) where patients can find more information.
What are the most common symptoms that might be signaling a thyroid failure and how can you recognize them?
Some people have obvious goiters (enlarge thyroids due to hypothyroidism) and other people have some or more symptoms. The list is lengthy, but some of them are fatigue, difficulty in losing weight, depression, feeling cold, menstrual cycle problems, etc. Too bad, most doctors only rely on TSH test which is not the best way to diagnose a thyroid patient.
What are the biggest challenges that thyroid patients are being confronted with before and after diagnosis?
Before diagnosis, the difficulty is getting the right diagnose. As said, the standard TSH test only is not the best way. Also, if a person has the antibodies that indicate Hashimoto's disease, what's the use of waiting until the TSH levels are out of control? Unfortunately, this is what many doctors do. After diagnosis, usually, patients are prescribed the standard medication which doesn't help in many cases. So the patient remains tired and depressed and the family/spouse don't understand, because didn't the doctor say you're fine and to just take this pill every day and everything solved? If only this was true for everyone.
How does autoimmune diseases and particularly thyroid conditions as Hashimoto's or grave's disease relate to the importance of using natural cosmetic products?
Of course, it's important for everyone to use safe and natural cosmetics, but particularly for autoimmune thyroid patients. The last thing you want to do if you have an autoimmune disease is burden your immune system with toxic chemicals. It's very important to choose cosmetics that don't only make your body look good, but also support your body system and not damage it. Therefore, we need to steer clear from cosmetics that contain certain hormone disruptors.
How important is lifestyle for someone coping with thyroid diagnosis? Which are your recommendations and resources?
Thyroid disease is not a disease where you can neglect your body and expect to feel well. I think that thyroid patients, especially autoimmune, have to become health experts in a way. Of course, it's a personal decision to do this and up to which level, but feeling well and staying well takes care, planning and knowledge. Many autoimmune patients feel better when they go gluten-free and this goes for me as well. Many patients have food sensitivities so I would recommend testing this yearly and avoiding the foods that cause a reaction. Thyroid disease can cause muscle deterioration so exercise would be important. But not too vigorous exercise, unless adrenal fatigue has been ruled out.
A final thought?
If you are not feeling well, do everything to get better!. Don't just accept the situation, but find a health professional who will work with you until you get your life back. Fire some if you need to, but make sure you get your health back. And then, share your story with other patients so they can learn from your experiences.
Thank you Renate for the interview !