My autoimmune story began on a beautiful sunny autumnal day in 2009. It was early autumn, and I decided to enjoy a run with my two dogs, Sky and Kodi, a Weimaraner and German Short Haired Pointer cross – they were strong and fast and I had to keep them on lead until we reached the fields around the corner from my house. They got a bit too fast as we approached the end of my road and in order to turn into the lane that led towards the field, I had to slow them down. It was at that point I felt a crunch in my knee. I was surprised that there was no pain and much to my amazement, I enjoyed a lovely run with them across the field. I thought I’d had a lucky escape as I was beginning to get a few more gym injuries at that time, and recovery from those was frustratingly slow.
A week or so later, I was running upstairs (as I always did!) and turned on the landing to feel a strange crunch in the same left knee once again. I immediately thought, ‘That doesn’t feel good’ but I didn’t have pain so I carried on. It wasn’t until a few days later that I felt a tightness in the knee when I bent down to load the dishwasher. My jeans seemed extra restrictive over the knee and when I looked to see what was wrong, I noticed my left knee was badly swollen! I couldn’t understand how it got that a big without me noticing, not much pain was the only explanation.
My GP suggested rest and anti-inflammatories but after 10 weeks, it was worse, not better so I finally got referred to see a specialist. They presumed I had damaged my cartilage and that the only way to find out was to have an arthroscopy but due to the Christmas holidays that didn’t happen until January 2010.
During the operation, they discovered a lot of inflammation in the joint. I was told the tear was minor and my joint was in good condition but there was lots of inflammation on the surface (the synovial membrane) of the joint. By February 2010, my knee was still very swollen so on the recommendation of my orthopedic surgeon, I went to see a rheumatologist. He removed some fluid and gave me a steroid jab. He did some blood tests and the results were – RF test negative – but ESR and CRP were high, indicating inflammation. He said, although my RF test was negative, I had Rheumatoid Arthritis. He told me about the drugs I’d have to be on for life, I was in a bit of shock and needed to go away to think about things.
As a result of the swollen knee I was limping and my right ankle became irritated and a bit swollen. I went back to the rheumatologist in May 2010 when he gave me another steroid jab and suggested I try drug treatment. I went on Sulfasalazine but in the 3rd week I reacted to the drug. I felt hot and faint, my face was red, I had a skin rash and my heart was beating so fast, something I had never experienced before, I was extremely worried. He suggested I came off the drug for 10 days or so and then start again. But I came off the drug and never went back on it, I was too scared and genuinely thought I’d have a heart attack if I did. I had started to do a bit of research into the immune suppressing drugs used to treat RA and it scared me, I thought there must be another way.
I knew I needed help but I decided to treat my condition naturally. I had lived a fairly holistic and organic life up until then. I had always eaten well, avoided junk foods, used natural beauty products, loved exercise and generally thought I was fit and healthy, so this was all a shock. Why me, I thought? Even my friends said it was ironic that the healthiest person they knew had been diagnosed with a life-long, life-limiting chronic illness! I loved being active and going to the gym, movement was my life and the thought of a painful joint condition for life, being incapacitated and inactive was abhorrent to me. I did some research, adjusted my diet and things improved but I struggled to gain full movement in my knee. I sprained my right ankle in July 2010 and it took 6 months to recover – an indication the inflammation was still there.
As my operation was done privately (via my health insurance), my GP had to refer me to an NHS rheumatologist and in July 2010, more blood tests were done including an antibody test. My CRP levels were sky high and I tested positive for all three ANA antibodies. Drugs were the only option, Methotrexate, was on offer this time. Once again I refused and they said go and think about it. By September 2010, adjustments to my diet had reduced my CRP from 44 to below 10 so it was heading in the right direction but I still had RA antibodies.
My GP accepted I didn’t want drug therapy and didn’t want to persuade me. He said ‘rheumatologists can only offer drug therapy, so why are you going on these appointments?’, it made me think. I realised it was because I had been handed over to the NHS and presumed I had to go……it didn’t make sense but when you are caught up in the throes of pain and chronic illness, you are not always thinking clearly, I knew I had to cancel my appointments. After all, I had no intention of going on the drugs. So I left the warm arms of the NHS behind and started the lonely journey of finding a way to get my immune system working properly again.
Over the next few years, I kept my diet healthy and tried various things to keep my joints pain free and my CRP levels (inflammation levels) low. Despite various diet and supplement interventions, I still had low level inflammation and some joint issues. I was also feeling very tired and really wanted to get my inflammation levels down further so I went to see a functional doctor in London in 2019. I had never done the full package of blood tests since 2012 and it would be good to get an update.
Read more about my RA journey, advice, top tips and what I’ve learned, HERE
The functional doctor did a lot of tests and rather unexpectedly, diagnosed Hashimoto’s Thyroiditis, or the autoimmune version of under active thyroid. I was now dealing with not just one, but two autoimmune conditions, I felt it had taken me years to become my own RA expert and now I had to start all over again, I was overwhelmed and exhausted. As she was what is known as an integrative doctor – in her case, a traditionally trained GP using functional medicine to treat autoimmune conditions. The consultations, tests and 3 months of supplements, cost me nearly £3000 (this is private medicine at the end of the day and doesn’t come cheap and because it’s functional medicine, can’t be funded by medical insurance). After her diagnosis, she prescribed Levothyroxine and a lot of supplements and within a few weeks I developed itchy skin that became a head to toe rash.
It was unbearable so I came off everything as I hadn’t had this before I went on the meds and supplements so I presumed there was a link, and my skin calmed down. I was advised to try again, this time my knees swelled up so badly, I couldn’t walk or bend them. My integrative GP thought that this was more to do with RA than Levothyroxine, but, as the RA only showed itself when I injured a joint, I knew I was not prone to out of the blue joint reactions, there was always a reason. Once again, I came off Levothyroxine and my skin and joints calmed down.
Read more about my Hashimoto’s Thyroiditis journey, advice, top tips and what I’ve learned, HERE
By then the rash had come back and developed into hives or urticaria. It was awful and there was no end in sight so I pinned my hopes on getting my thyroid in balance and hopefully calming the skin down as a result. I thought, as the urticaria started following thyroid treatment, there was a link between Hashimotos and the urticaria, I knew I needed to protect my thyroid gland whilst trying to find out the root cause. I needed to look for an alternative, natural thyroid treatment and found Dr Frey, an integrative GP and thyroid expert. He started me on a natural hormone replacement, a very low dose of Armour Thyroid in February 2020.Unfortunately going on Armour Thyroid, although balancing out my underactive thyroid issues, hasn’t resulted reducing the antibodies or proved to be the in a miracle solution for the urticaria.
All those years ago, some people might have only needed to remove gluten from their diet to reach the results they needed, for me that did not happen. Although sometimes I think ‘why couldn’t I have got better by cutting out gluten or dairy, a nice simple solution?’ Well that was not to be my journey. I believe my journey has been for THIS reason. The reason I am writing this, right now. I believe I’ve been ill so I can help, offer advice, and share my story and knowledge with others. If I can speed up one person’s journey to wellness, and protect their body from damage, then all this will all have been worth it.
There is a bit more to share however, a few years ago, during an osteopath appointment, Mojo, my osteopath, was talking about the relationship with autoimmune conditions and the vagus nerve….this led to more research and bingo! This was the missing link in my recovery journey. I had always felt there was possibly a sub-conscious reason I was not recovering fully and kept hitting a plateau despite on the surface feeling happy and positive, I always felt something deep down was stalling my progress.
So as you have probably worked out by now, I am not 100% fixed (though I’m close to remission) BUT, I am thriving and very close to my wellness goals. It’s been a long and complicated story and not everyone will have the same rocky healing path that I have experienced. You can see I’ve gained loads of experience along the way from my practitioners and the hours of research I’ve done which led me to qualifying as a Nutrition and Health Coach with the IINH! Being passionate about eating whole foods and living a healthy, holistic lifestyle, I can now offer nutrition and lifestyle advice to anyone who wants to reach their wellness goals!
Read more about my Nutrition and Health Coach services HERE!
The things I have learned:
- A healthy lifestyle inside and out is vital for good health.
- Treat yourself kindly.
- One person’s fix is not necessarily going to work for you as we are all unique so don’t be disheartened if it isn’t the answer, as it may be a vital part of your journey towards wellness.
- The mental and physical are intrinsically linked – you must do both if the interventions you have done so far, have not got you the results you want and need.
- Never give up – just know the body has an immense and endless capacity to heal itself, it is simply designed that way, and given the correct environment, it often does.
- Work with health professionals that resonate with you, whether they be from the traditional medical side or the functional medical side or both – if you feel they understand you and support you in your healing journey, stick with them.
- Never be afraid to ask questions, your constant curiosity will help you find the path you need to take.