Hashi & Me is a series of stories for people with Hashimoto’s told by people with Hashimoto’s and other thyroid problems. In each piece, one of us will share our experience with Hashimoto’s, our personal findings and tips. We believe one person’s experience can be useful for others, especially to newly diagnosed people.
This week meet Nicole, a yoga/SEN teacher from Australia, living in London.
How and when did you discover you had thyroid issues? Tell us your story.
I discovered I had Hashimoto’s by accident after developing tingling sensations in my hands and feet. As my mother suffers from MS, I was fearful that I may also have it so I requested an MRI from my GP. The agonising wait for results and the possible outcome terrified me. Fortunately, the results were clear but the sensations in my hands and feet remained unexplained.
My Dr had also requested some standard blood tests and it was then he picked up that my TSH was a little higher than normal. He said to just keep an eye on it and have regular tests to check that they are within the normal range. To be honest, I didn’t really know what my thyroid did let alone how important a role it plays! After another year or so — I started to develop other symptoms particularly fatigue, loss of my sex drive and depression. This time, my GP requested a full thyroid panel.
The results were positive for Hashimoto’s — I was shocked as I had no ‘traditional’ thyroid symptoms, the weight gain, hair loss etc. I was devastated to learn that it was not just a case of underactive thyroid but an autoimmune disease, just like my mother has. I went into overdrive (I’m a bit of a digger!) and set about learning everything I could about the disease. My doctor swiftly referred me to an endocrinologist for further treatment.
The endocrinologist confirmed the diagnosis and quickly recommended levothyroxine. He told me that there is no cure and no real evidence of the root cause as everyone is very different. ‘And by the way, you’ll have to take this for the rest of your life! ‘
I felt overwhelmed and completely hopeless — no clear root cause, no cure and a life sentence of popping a pill everyday to control it. So I said, ‘thanks but no thanks’ and quickly set about researching all I could about my root cause and did all I could to avoid starting levothyroxine. I could not believe that there was nothing to be done but sit back and let this disease consume my life.
I managed to avoid the medication for a few more years but my health began to deteriorate. From mood swings with hysterical crying, acne, depression even some hair loss — not only was I suffering but my partner and relationship was also being affected. I finally gave in and started taking levothyroxine and after a while, some but not all of my symptoms started improving.
I now take a combination of levothyroxine and Nature-Throid to help ensure my levels are balanced but have no intention on doing this forever. With this combination along with diet and lifestyle changes, I have managed to find a balance that works for me.
What did you learn since? Do you have some tips or findings to share with other Hashimoto’s people?
I am grateful that I have Hashimoto’s and that may sound strange but it has sent me down a path of self discovery. I have learnt so much about my body, it’s amazing abilities and limitations. Constantly learning about my physical, emotional and spiritual bodies has been both a joy and a nightmare!
I encourage everyone to find their root cause as it is different for us all. There is no magic pill and you will have to dig. Find a natural therapist -someone who specialises in functional medicine to help you on your journey. They will be able to recommend the right tests and diet and drill down and help you find your root cause.
I became my own therapist as I could not find anyone at the time who ticked all the boxes for me. Even now, my functional med Dr said he could not help me the way I want as I am doing all the right things with diet, testing etc on my own. He was right — he now just prescribes me Nature-Throid so I can wean off levothyroxine. I test my levels regularly to make sure I am on track. I don’t recommend this if you are newly diagnosed.
Changing my lifestyle has also been extremely important. Stress is a huge trigger for me so managing this has been key in my healing journey. I still struggle with it daily but know through yoga, qi gong and regular visits to energy healers, I can stay on top of it :)
You are the best judge of what you need and what works for you. It will be a journey of experimentation — keeping a journal of what is working and not working will help you keep track.
How does your day with Hashimoto’s look like?
I try and start my day with exercise and qi gong. I also take my medication at this time. When I am teaching, exercise happens in the afternoon which is sometimes difficult as I can be exhausted by then. I have been experimenting with intermittent fasting which means that I finish eating dinner etc by 7 or 8pm and then don’t eat again until around 11 or 12pm the next day. This gives my digestive system the complete break it needs and I have definitely been feeling more energised in the mornings because of it.
I eat two times a day with a protein snack in the afternoon to keep my energy up. I don’t suffer from too many symptoms at the moment — this can change though if I am not eating correctly or am away on holidays and out of routine. I tend to avoid dairy, gluten and sugar — I feel so much better and have noticed my antibodies reduce when I stick to it.
In the evening, I meditate and try not to go near my computer before bed. This way my body can wind down naturally. Getting regular sleep is so important for me so I go to bed routinely between 9.30 and 10pm.
What has been your biggest struggle and biggest victory?
My biggest struggles have been not being able to easily find a Dr to help me. It is an expensive and difficult journey and there needs to be more information available to local GPs so that they can recommend and advise patients better. At the moment, you seem to have to spend a lot of money on private therapists to make any progress. That is why I became my own Dr!
I have spent way too much trying to figure out my root cause — no one should have to do this. Good health is a right and not something you should have to pay large amounts of money for! It is because of this struggle that I decided to study and become a healing coach focusing on diet and hashimotos.
This way I can use everything I have learnt to help and support others like me. I’m in the middle of setting up my website in order to serve you all :) The biggest gift I can give is information about my journey so that others like you, don’t have to struggle as I have.
So in a way, my biggest struggle led to my biggest victory. I know my body so well now and never would have learnt the things I did without having Hashimoto’s. And because I have applied all the things I have learnt — my autoimmune antibodies have reduced dramatically.
What advice would you give to someone newly diagnosed to ease their first steps with Hashimoto’s?
Knowledge is power — learn everything you can about Hashimoto’s and the thyroid. I discovered most, if not all, about treatments from researching it myself. I learnt from community, blogs and groups on the internet. I joined every Facebook group I could on thyroid and Hashimoto’s and it has been invaluable. It is one of the reasons I started my own fb group — not only to encourage awareness but to celebrate successes that I and others were having.
Be aware that your local GP, more often than not, is not going to be an expert on this condition. Even top endocrinologists were not willing to listen to research I had found or alternative therapies I was using. I was removed from one such endocrinologist’s register as I had told him about my experimentation with diet, naturopathy and intolerance testing. He believed that Hashimoto’s could not be cured and the medication was the only way to go. I only knew he had given my case to a colleague when I arrived for my next appointment!
Take your time to find a good functional medicine specialist who will treat the person and not the disease- who listens and is willing to try different approaches.
My best and most important piece of advice is to love yourself!! This lesson has been the hardest for me but ultimately the most important. Be kind, believe in yourself and listen to your body:)
Healing will take time but I believe it is completely possible for all of us!