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
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StellaTed
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Well done you for fighting your case and standing up to this 'Occupational Health Therapist!' What a terrible situation to be put in. Congratulations and I wish you all the best for your wedding and your future🥰always remember there's a light at the end of the tunnel no matter how far away or how dim xx
Hi StellaTedThanks for sharing your story. It will be inspiring for all those people who are possibly new to the thyroid journey to see that recovery is possible! I remember reading here a while ago that it can take a long time to get the point of feeling "normal" or a as good as normal. In my case it's taken a long time. When you are new to this and searching for answers it's hard to conceive that you will ever get better. Patience is key as healing our bodies takes time. It's nice to hear a recovery story! Thank you! 😊
I cannot believe the hurdle you were served up, and got chills hearing how you didnt take long to rally.
I needed this today. Sparks up the hope and optimism again.
We measure our progress in months and years, not days and weeks. It’s just the way it is, playing the long game. Thanks for taking the time to tell your story.
No problem at all FallingInReverse , I’m glad it gave you a little boost in optimism, I was really hoping my story would resonate and give even just one person a feeling of hope. Absolutely, being well is such a delicate balance and can take a long time to get right, but we can all get there ☺️
Thank you for sharing your story. I am so glad it worked out for you. Your experience of the Occupation Health Advisor is one of the worse I have ever encountered!
I remind myself here that not all of us with thyroid disease can afford either private health care or private treatment.
But, by the sounds of it, I do need to start playing the lottery!
Absolutely, we shouldn’t ever be pushed to private treatment for a condition that is so easily treatable with the right dose of medication. Whilst it has not been easy, I am fortunate to have been able to afford private treatment for my condition, whilst always being acutely aware that others may not have access to this. I hope one day that early diagnosis and appropriate NHS treatment of thyroid conditions will be the norm.
I’m constantly staggered on this forum hearing about the dire treatment by doctors of their patients.
It’s not so much their incompetence that is the issue but the arrogance that underpins it. The doctor you saw didn’t want to understand you and your symptoms but had her own agenda that could have caused untold damage to your life.
The best bit of the story is how you rallied and took control. That is what we should all take from what happened, that our body is our own and we should never allow anyone to do anything that harms us.
Morning.I had a telephone appointment with occupational health in December and luckily asked them to send the report to me before my employer.
She didn't mention viral information that was raised during the call and the report didn't reflect what was going on at all.
I was signed off in November after adding a pe to the mix. She sounded sympathetic over the phone but completely failed me in the report with her generic "occupational health get out clauses".
I am in the process of rewriting it to give a true reflection as I know I don't be getting any help.
The nurse that interviewed me was struggling with her own asthma problem and was having trouble breathing so think she stuck to her own keywords.
I feel very let down and think I am the only one really representing myself.
Glad you managed to stick to your guns and help yourself x
So sorry to hear you’ve had a similar experience, it’s really frustrating to feel like medical professionals can’t hear what you’re saying or see how you’re suffering. Well done for rewriting it to make sure it’s properly representative though! Wishing you all the best with your next steps, and remember that you’re not alone in your experience, keep going ♥️
Thank you, I've been signed off for another couple of weeks but want to speak to HR before I go back, I seem to be the only one in my corner. Very frustrating not being listened to x
Thanks for the inspiration. My wife has been through hell because the Doctors don’t listen to people telling them they are ok because their bloods are within range when they actually still need extra treatment because they are still feeling unwell and don’t seem to understand statistics which is all the”range is about. Despite having a vit d level that was so low it almost fell out of range her gp was unconcerned despite her being on supplemental Vitamin D to get that far we have ordered a full suite of bloods for her to see if there are any signs of other issues.
And my experiences at the hands of orthopaedic nurses and a consultant Neurosurgeon whose treatment went directly against what was recommended by other medical opinions has left me crippled and in permanent pain because I’ve had to fight all the way to get what I needed but too late to save my spinal cord from being permanently damaged. It’s unbelievable that it’s so difficult to bring them to account.
The delays caused by having to fight a dr who won’t listen and puts a completely different l spin on what I tell them is happening is disheartening and so unnecessary. The other issue is if they get it right first time it would save the NHS hundreds of millions of pounds that could be used to hit those waiting lists and help other people get better too.
So sorry to hear that both you and your wife have been through such difficult times with your respective health conditions. It does bewilder me how thyroid conditions are so common, and yet the quality of treatment is so lacking or completely withheld in a lot of cases. It does seem that the doctors who do help people with thyroid conditions are few and far between, but I hope your wife can find one soon.
Oh my gosh - what a testament! And to be virtually written off at 27. Shame on that person. Thank you for sharing something so uplifting on a gloomy morning 😀
Thanks for sharing your story. I have recently started doing some occupational health work (I am an occupational therapist), and find your account quite shocking! OH reports should be objective, focusing on a person’s functional abilities and be a supportive framework. I’m so sorry that this was your experience, but so glad that you were able to stop the report going to your employer, and get your specialist’s advice instead.
It seems I had a particularly bad experience, and I’m sure most occupational therapists do a fantastic job of supporting their patients. Wishing you all the best with your occupational health work!
I completely understand your journey. Mine was not that dissimilar. Felt at times I could have wrote the same things. I too am now symptom free and full of vitality. I come on here offering help if I can to others still perusing a better health. I’m so pleased for your outcome and that GP who wrote that very poor report should have been reprimanded by someone or struck off. She could still be out there ruining others lives. Did you ever report her for nearly ruining your life.
Sorry to hear you’ve had a similar experience, but so glad to hear you have also come out the other side of it!! I think it sometimes seems like there’s alot of doom and gloom because people need support and advice the most when they’re at their worst, whereas people who are feeling well are less likely to post a success story because they have moved on! That makes it so important for us to share the positives and some motivation now and again
I did report her to my employer, however I believe she is still practising unfortunately.
I agree and it has been uplifting to read your post on your success and determination to get your health back. Keep going strong. I now say I’m getting younger each day. I’m 65 but feel better than I did in my 40’s and 50’s now I’m on track. I do post on here and read peoples issues and try to help them if I can. Maybe as I have time as I retired early. I’m so happy for your future and a full life you can look forward to. Enjoy!
Well done on not giving up. I’m at the beginning of my journey really but having been under medicated for many years by GP managed with help of this forum to get to see an Endocrinologist & have just started T3. I’m hoping for a significant improvement as have barely been able to leave the house for 4 years. I still keep on getting up & trying. Your story gives me hope for the future although I doubt I will be skiing or hiking any day soon. Thanks for posting.
what a fighter you are I’m glad you didn’t give up when you received her letter, I think a lot of them shouldn’t even be drs , I’m glad your on a high best wishes and keep going
Doctors don’t realize how dangerous their words can be …. I had ovarian cancer and had hysterectomy and about 6 months later we moved and my new GP said to me you didn’t have ovarian cancer and your hysterectomy wasn’t necessary (I gave up children with this surgery) I died that day and still can play that conversation over as if It’s been recorded…. Some people are just horrible humans and you should file a complaint and take it as high as you can and get it removed from your file .
So sorry to hear about your experience, it is scary how life changing decisions can be made for you in the blink of an eye. I hope you are now healing from this experience and that you can find some peace soon x
What a wonderful story to share. It shows how unnecessary obstacles can be put in our way, how one doctor can violate our trust and potentially ruin our life. However, it also shows that we can stand up and advocate for ourselves, that one doctor can stand by us and help us get what we want from life, be a partner in improving our situation and give us the support we need. A big shout out to those doctors who do not cease to support us. 👏 And, of course, a big shout out to you to pull yourself out of the momentary darkness and rally. 👏Lesson: Never give up. Never give in. Thank you for sharing this part of your journey, StellaTed. It makes me very hopeful and so happy. And it gave me such a big smile 😃
Dear StellaTed, what an utterly ghastly and demoralising experience. Huge congratulations to you for having the foresight to refuse to release the report. I agree with many others who’ve replied this ‘GP’ should be stuck off. But you with your courage and determination you overcame what could have demolished many people and now you have not only got yourself well but have a wonderful life and even more happiness ahead of you. Bravo, and congratulations and best wishes for your future happiness. 👏👏👏
That’s very kind, thank you! I am so happy to see it has given several people a little boost, and I hope that my story comes to mind when others are going through dark times.
thank you so much for writing this. It’s brought a bit of a tear to my eye! I almost feel that I’ll never get back to being as active as I used to be but this has given me such hope! Thanks for the positivity xx
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thanks for posting your story
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