Two years ago an occupational health advisor wrote a review of my condition for my employer that broke my heart.
I was 2 months into taking NDT and finally starting to see some improvements in my Hashimoto’s symptoms. I was gradually building up my stamina and able to go for a 15 minute walk, and I was back at work part time, albeit desk-based.
I was feeling brighter for the first time in a while, and was happy to speak to an occupational health expert who I thought was going to advise me on how to continue building up my stamina and support me returning to my full time hours at the job that I love. How wrong I was.
The occupational expert I was referred to happened to also be a GP. She was friendly and seemed genuinely interested in me and my health. I willingly told her everything, not just about my progress and plans in an occupational health context and how hopeful I was feeling about my progress, but my blood test results, prescription for NDT from my private doctor and my diagnosis of Hashimoto’s. I was lulled into a false sense of security, she even said “sorry for asking, I’m just really interested in thyroid conditions!”
Then she started questioning everything…she told me my blood test results didn’t indicate a thyroid condition, that I shouldn’t be taking NDT, and questioned the qualification of my private doctor (a fully qualified thyroid specialist). Remember, this occupational advisor is not my doctor, and was not supposed to be giving medical advice. I suddenly felt vulnerable and uneasy about the situation, but the damage was done and I would have to wait for the report to see what would happen next.
The report arrived shortly after…and it was worse than I could ever have imagined. It painted an image of me that I couldn’t relate to at all. It didn’t mention my diagnosis of Hashimoto’s thyroiditis anywhere, it didn’t even have the word thyroid in it. Instead, she had “diagnosed” me with chronic fatigue syndrome, a condition which I do not have. The advice in the report was therefore all woefully inaccurate, painting an image of someone who we should wrap in cotton wool and whose health is going to never get better. (Which, I might add as the daughter of someone with ME, is not a helpful or accurate thing to say to someone who even has CFS!)
The report to my employer said I should remain part time, be desk-based only (my role involves regular fieldwork), should not go for walks longer than 15 minutes, should not walk over “uneven ground”, should not play sports and a whole host of other bewildering recommendations.
The fundamental issue was her refusal to acknowledge my actual diagnosis, and decision to brand me with a miserable outlook based on a condition I do not have. This should never have happened, as she should have been advising me on the diagnosis I brought to her, as any other occupational health advisor would do. I have since read that it is not recommended to use occupational health advisors who are also GPs for this very reason.
Thankfully I had a 48 hour window to read the report before it was released to my employer, so I categorically refused permission for it to be released.
Initially, that depressing report made me question myself, maybe I was doomed to be bed ridden for life and become unable to work? Maybe I didn’t have a thyroid condition? Maybe I was taking a dangerous medication? Maybe I couldn’t trust my doctor?
I was home alone when I received the report and can clearly remember slumping down to the ground in tears, overwhelmed and letting out screams of sadness. It was a huge blow to me and has had a lasting effect to this day.
It didn’t take long however, for me to rally. Despite my physical and mental health being truly tested by my thyroid condition over the last few years, I have never lost the fight inside me. Even during the lowest point of this illness, where I was off work and largely housebound, unable to walk a couple of minutes down the road, I never gave up this sense that I had to fight to get well again, and that I would do absolutely anything I could to get there.
And this feeling quickly bubbled up inside of me again whilst I was sat on the floor clutching the report. How dare this person who was meant to be helping me return to full time work ask for personal medical information that she did not require. How dare she decide to make her own “diagnosis” about my condition without my consent. How dare she ignore the diagnosis made by my specialist. How dare she write a report to my employer portraying me, my health and my future in such a wildly inaccurate way. How dare she try and take my career and my passion away from me. At the age of 27 she was ready to condemn me to a life of hopelessness, and there was no way I was going to accept that.
I spoke to my HR team and was able to submit a report from my specialist instead of the occupational health company. This new report accurately explained my condition and my current limitations, but also spoke of my recovery and how my new medication was going to make me feel so much better.
And wow, was he right! Fast forward to two years later, and I’ve been back at work full time approaching two years. I regularly do fieldwork, involving long days of walking, hiking, carrying heavy equipment and driving. I’ve been on holidays, I’ve been up mountains, I’ve been kayaking, I’ve excelled at work and now I’m engaged to be married. I am living the life I have always wanted to and I will continue to do everything I have ever dreamed of. Of course there are sometimes considerations I have to make such as factoring in rest days here and there, but this is a small price to pay for the colourful life I can now lead.
I wanted to share this story with you, in part to help me continue processing all of this and because I was reminded of this experience today, but also to share a story of hope for anyone who is struggling. The state of thyroid healthcare is not good, and unfortunately it’s often down to the patient to fight for treatment, but I want to tell you all that it is worth it. This forum is an excellent place to learn from others, to equip ourselves with the knowledge needed to achieve the right diagnosis and treatment and to remind ourselves that we are not alone in our experiences. I hope that one day people with thyroid conditions will be treated better, but for now, we’d better keep fighting <3
thanks for posting your story
Trying really hard to keep a grip. Feel like I'm always moaning on here, so sorry!
A Journey to Some Answers to Thyroid Treatment
I think I have found the culprit to my autoimmune myxedema condition....AMALGAM FILLINGS AND A BROKEN ON TOO.
Well that's just great, GP just called and told me to stop taking Levo as a senior doctor at my practice doesn't agree.
