I have an uninvited guest for a while now. Following me around the world and always living closely with me……unglamorously called Hashimoto’s Thyroiditis.
As some of you may already know it’s an autoimmune illness that primarily attacks the thyroid gland. After a multitude of blood tests I found out that I was en route to developing other autoimmune illnesses with my very high Anti Nuclear Antibodies (ANA) and elevated inflammatory markers, together with my symptoms like inflamed & painful joints, constant muscle aches, extreme exhaustion, numbness on one side of my face, sudden skin rashes, brain fog and the list went on.
My Rheumatologist in Sydney suspected that I may be developing Lupus even though at that point I had tested negative for it.
Lupus is a complex systemic autoimmune disease and it’s not easy to get a diagnosis just based on blood tests as she explained to me. Sometimes even if a person tests positive for lupus that doesn’t mean they have lupus but it could be due to some other illness they might have and just because a person tests negative for lupus doesn’t mean they don’t have lupus. So it takes a combination of blood tests, the patient’s symptoms and other examinations to get a diagnosis and even then it might take years before there is a conclusive one.
My lab tests were not conclusive enough that I had Lupus at that time and I was given a diagnosis of an undifferentiated autoimmune disease instead and was told that in the future I might develop something more specific like Lupus or Rheumatoid Arthritis. In the meantime, I was asked to take Plaquenil (a Disease-Modifying Anti rheumatic drug) to calm my immune system down which should help my symptoms. I was also given a list of side effects that came with the medication. I would also have to go for additional tests every few months to check my eye sight and liver function as Plaquenil may cause problems with eyesight and liver in some people.
I told my Rheumatologist that I needed some time to think about what I wanted to do next and walked out of her clinic feeling one part relieved and the other part terrified.
One part relieved because after 4 years of suffering these symptoms, undergoing countless blood tests, MRI scans, specialist appointments in different cities and with me insisting that something was wrong with my body, I finally got a diagnosis of sorts and a medication that might help. The other part of me terrified because along with that medication came another set of problems that would affect my body.
Well, I already have one autoimmune disease Hashimoto’s Thyroiditis and I definitely don’t need another one. So I knew whatever I had developing in my body besides Hashimoto’s I needed to do whatever I can to halt it in its tracks. I needed somehow to heal myself without further damaging my body.
Medicine has its place and has saved many lives. If Lupus was diagnosed as such and if it had affected my internal organs I would be the first one in line to take whatever medication I needed to save my organs and health.
But I felt like I still had a choice and I didn’t need to take a medication which would cause other problems along the way.
By no means was it an easy decision. I was not able to function properly on a daily basis with the kind of exhaustion that made me feel like I was run over by a bus every single morning. It was not like I had an unhealthy lifestyle. I hiked every weekend, did yoga a few times a week, ate healthy sandwiches, pasta and meals for lunches and dinner.
It was without a doubt one of the lowest point in my life.
No one in my family had such symptoms like mine either. So why me and how did I get here – to be at the prime of my life and be sick like this? I was only 31, I ate healthy, I don’t smoke and I exercise. Can you get any healthier than that? I mean really?
Well as you may have already guessed, feeling sorry for myself and asking such uplifting questions only added fuel to the fire. I just got more sick & exhausted. At some point in my misery, I remembered the positive intention I had set for myself leaving the Rheumatologist clinic.
I decided to try my first meditation class. It was one of the best things I have done for myself. I was able to deal with some of the negative emotions I was going through and slowly come back into a positive frame of mind again. The meditation classes also brought up pent up emotions I had in me that I didn’t know were still there e.g. the passing of my Grandma, a difficult relationship with my Dad growing up. I realised that I had to make peace with these issues if I was ever was going to get better. That was the start of my healing….
As kind and generous the universe is, I stumbled upon a wonderful GP in Sydney who practiced Functional Medicine (Functional Medicine means finding and treating the cause of an illness instead of just the symptoms ). She advised me to give up Gluten, Dairy and add some vitamins to my diet which I was low on. I resisted as I couldn’t see how something that I ate all my life would be making me ill. The only other choice I had was to take Plaquenil which was not an ideal solution for me, so I decided to give up gluten and dairy cold turkey. I had not much to lose.
That “brain fog” which became a constant companion preventing me from remembering how many toes I had vanished within a month!
I couldn’t remember the last time when my stomach didn’t feel like it had an iron ball stuck inside. That iron ball vanished too. Just giving up these 2 things made such a huge difference and most of all the exhaustion, the muscle pain/stiffness & joint pain I was suffering from diminished greatly. I was over the moon!
Four months down the track with this new diet and the supplements that were prescribed to me by my GP – blood tests corresponded with how I was feeling: lower antibodies all around, my vitamin levels were up and all other stats were better than before.
I slowly started making other changes and not only giving up gluten and dairy but also eating organic produce, being aware of using quality ingredients, reducing sugar and removing processed foods from my diet. Practicing mindfulness & meditation, low intensity exercise and learning to let go were also big part of the changes I made.
I am glad to say that most of my debilitating symptoms are now gone and I feel better than I have felt in years. I have in no way cured myself but I am able to function normally now and can manage my illness/symptoms with the changes I have made. 80% well is better than 100% feeling like shit. So I am extremely grateful for that.
There is no cure for autoimmune diseases which I accept and I also accept that there will always be flare ups when I fall off the track from my ‘clean’ diet or when I get caught in between life’s stresses.
I also accept that in the future I possibly have to take Thyroxine (Thyroid hormone) should my Thyroid gland stop to function fully. I accept all these and I am at peace with it. Acceptance has been a huge part of the healing process for me. It helps.
Even though my flare ups now are lesser and far in between, it does get hard during one but sometimes it is liberating to say “Fuck you Bitch” and get on with life. To just keep on doing the best we can for ourselves, our body and mind every single day, even through a flare up with the knowledge that it will get better again.
The process of healing my Autoimmune illness is ongoing and I am always looking for ways to improve my health so my journey still continues and it never ends. Changing my lifestyle to a wholesome one which enriches my mind, body and soul is a start and I look forward to sharing more of my wholesome adventures here.
If you are struggling to find a doctor who will listen to you and approach things in a holistic way or just to complement your current treatment, have a look at the following links. There are medical professionals who are registered with the Institute of Functional Medicine and with the Australasian College of Nutrition and Environmental Medicine who may be of help to you.
Finding a GP who practiced functional medicine was a life saver for me. She was able to guide me through my illness and the recovery.
Important Note: This is my own personal journey and experience. I am not a medical professional and am no way qualified to advise anyone to change their diet or medication. Please consult your doctor before making any changes to your diet/medication. Mostly I hope you will be able to find a doctor who will listen to you and help you get to where you need to be. Stay strong, be an advocate for your own health and never give up.