Charlotte, diagnosed with hypothyroidism

When I was first diagnosed my antibodies were raised but TSH was normal so the doctors wanted to monitor and wait and see. About a year later I was put on Levothyroxine. The idea of being on medication for life was quite depressing, but thankfully I had no side effects and I was grateful to have caught it early.

I am now a few years on from my diagnosis and I am now starting to question everything more. I feel really frustrated that the treatment does not address the root cause. I’ve spent a lot of time reading the scientific literature on root causes and resolutions, but I feel there is a general lack of large and robust research out there. If you scour the internet you’ll find lots of suggestions, but they are not well evidenced. It’s a minefield!

I wish the doctors had more root cause research to draw from. Right now I feel like the options available are either to guiding yourself through a series of poorly evidenced fixes (not really safe), or to pay loads of money to see a private functional doctor who can work through it with you (financially challenging).

I wish the doctors just had more answers.

Beatriz, recurrent mouth ulcers

Hi! I’m Beatriz 

I have suffered from recurrent mouth ulcers for the past 6 years.
Every month, I suddenly got ulcers all over my tongue and my gums.
The pain was very intense and it took an average of 1 week to heal.
There was no apparent reason why I got them.

I was treated by more than 10 different practitioners - all of them recommended me to take anti inflammatory pills (ibuprofen) and other pain killers, but it didn’t work. No one could understand why the ulcers kept on appearing every month.

I spent many years doing research. I tried several treatments and changed my diet (was told to avoid many foods), but I still got them.
A year ago, I decided to stop taking anti inflammatory tablets. And it worked.
It turns out that my body was reacting to medication - I happen to develop kind of an allergic reaction to all those chemicals present in those pills, which I took to make them go away but that was the cause behind having them every month.

Ibuprofen is widely recommended nowadays, but it clearly did not work for me. I do not take it anymore. Avoiding it has made me feel better - It’s been almost 1 year without any breakouts.

Since then, I decided to take a different approach to health. I am not taking any anti inflammatory tablets, I keep a balanced diet and do regular exercise and I’ve never felt so healthy.

Emily, diagnosed with Scleroderma and Hashimotos

I was diagnosed with Scleroderma and Hashimotos in the same appointment by a doctor who assured me the first disease would be nothing more than some mild joint pain, and the second could be managed with medication. I left that appointment knowing that he was wrong, and I needed more answers. I am forever grateful that I listened to my gut instinct and got a second opinion. But even then I went through a few doctors before I found the right one.

Once I did find a thorough rheumatologist I was informed that Scleroderma was more than just “some occasional joint pain.” It involved internal organs, skin thickening, impaired immune function and dysfunction of the body’s systems. It’s caused by the overproduction of collagen which can lead to fibrosis (scarring of the internal organs). There is more involved but that is the short story.

I was told the treatment for the joint pain and fatigue was plaquenil which is an anti-malarial drug used in rheumatic conditions. I was apprehensive to take it.

I filled the prescription but ultimately decided it was not the right choice for myself. Something was telling me there was another way.

During that time while figuring out my health journey I went back to school to major in Nutrition. It has been an integral part of my healing and the reduction of symptoms.

I also had to battle intestinal bacterial overgrowth, systemic inflammation, gut healing, food intolerances, and getting my body moving through low impact exercise. The most important thing to remember is that a health journey is not linear, and that what works for one may not work for another.

Treatments should not be a one size fits all but tailored to each individual. My naturopath was essential in my healing journey. I think the biggest things that need to change in standard care is conventional doctors running a full nutrient panel.

Many symptoms can be resolved through proper supplementation and diet. I am not saying it’s a cure but it can help things, as malnutrition (which is common with some autoimmune diseases) prolongs disease states and symptoms and impairs immune function.

Anonymous, diagnosed with hyperthyroidism

I haven’t felt 100% for as long as I can remember. I went to a cosmetic appointment and spoke to the doctor. I broke down to her about how I’m feeling. She agreed to write to my GP and requested certain blood tests. I received a call one evening from my GP explaining it’s a thyroid condition. Being diagnosed did help me to understand there’s a reason for feeling like this. I was shocked, confused and never heard about it beforehand. 29 months on I still feel like this. 

I’ve been fortunate to have had the same endocrinologist since diagnosis till now. I was originally diagnosed with hyperthyroidism and have also been hypothyroidism. So move between both, I’ve taken Carbimazole and Levothyroxine which hasn’t stabilised it. I’ve been on Block and replace (Carbimazole and Levothyroxine) for a year now, which has stopped the movement.

I have felt frustrated with my consultant about it not being under control. I also felt not listened to after my appointments. To help with this now, I write a list of symptoms, medications and GP appointments. This has improved my experience. I may consider definitive treatment soon! 

Im currently experiencing underactive symptoms, this hasn’t improved.

I would be happy to speak to others and find ways to improve my overall health and quality of life.