‘All in your head’: when doctors misdiagnose autoimmune disease as psychosomatic
Open access and re-publishing encouraged:
theconversation.com/all-in-...
Blatantly stolen from this post on Pernicious Anaemia Society forum:
healthunlocked.com/pasoc/po...
I'll not comment as my low thyroid is not autoimmune.
Thanks for sharing Helvella 👍
My GP initially diagnosed me with ‘ health anxiety’, suggested I saw a psychotherapist & offered me anti depressants. Joining this forum helped me realise that my symptoms were related to being under medicated for hypothyroidism and I followed forum advice to improve both my mental and physical health 🦋
I always think saying that to any patient is SUCH a cheek. I can’t understand why doctors would prefer to believe a patient had ‘health anxiety’ and why they prefer to offer a patient (and dare I say it I bet that same patient is usually female) antidepressants rather than actually listen to their patient.
After being given the ‘run around’ for a very long time, I knew something wasn’t right and I thought it was probably something autoimmune but just hadn’t hit on the correct condition and I didn’t know about home testing back then - I was told by a female GP a few months before I finally had a Graves’ disease meltdown that I was ‘needing my holiday’. At least she didn’t offer me antidepressants.
I was actually pretty ill but because I looked ok it was assumed I was a time waster.
I’m glad you found this site and have improved but I feel furious on your behalf!
Quote: 'Feeling disbelieved when knowing that there is something very wrong with your body can have devastating and long-term consequences. One of the most obvious consequences is that you won’t get the correct treatment and support.'
The first word should be changed to BEING disbelieved. It's not something that I just 'felt'. It's something that was actually happening to me for years. Lots of wasted NHS money spent on umpteen unnecessary tests, referrals, psych assessments, psych counselling etc. Eventually, one disbelieving GP did at least have the idea of requesting a basic thyroid panel, and lo and behold... sky high TSH, sky high thyroid antibodies.
Thank you, Helvella, for reposting this.
Ironically, as part of an MA in Creative Writing degree I'd done a few years ago, I had to write a draft memoir about something to do with my life. Obviously I chose the theme of thyroid disease and not being taken seriously by doctors.... and I titled it 'All in Your Head.' If I ever get as far as sending a more developed version to a publisher, I shall have to change that title!
But it just goes to show how widespread is this kind of response from doctors.
Another one I remember well happened just after I realised all was definitely not okay, because I'd gained something like two stone -- after being at the low end of the BMI scale all my life. And not even the strictest diet was working. But the GP told me, 'I know you women, you like your chocolates and cakes. You're probably forgetting how much you really eat.' He made me feel utterly despondent, which had me resort to more unhealthy dieting and probably damaging myself more. And his refusal to believe me about that obvious symptom delayed my diagnosis by several years.
Thank you Helvella for posting this. 10 years of awful neuro symptoms for me to get believed and finally get diagnosed with Graves Disease. Before that I was told by Emergency Dept. Doctor I needed to "face the problems were in my head" ....
It's my 10 Year Anniversary this month of knowing FINALLY what was REALLY going on and fixing it.... and 7 years in Graves Remission.
But yes, the Scars of not being believed run deep. After Graves, I took a video of my fierce heart symptoms before going to the Emergency Dept. because I knew I wouldn't be believed and I wanted documentation in case i became unconscious OR still not believed.
Turns out it was heart attack and 100% blockage of the "widow maker". Thank goodness I had faith in myself and donned (yet again) my battle armour before seeking assistance. I'm alive today because of it. And I TELL EVERY WOMAN I KNOW TO DON HER BATTLE ARMOUR AND NOT GIVE UP!
I'd managed to miss this earlier post about the article.
interesting articles re misdiagnosis and gaslighting.
healthunlocked.com/thyroidu....
Apologies to Mollyfan
It's not just confined to autoimmune conditions. Those with ME/CFS and, increasingly, Long Covid experience it all the time.
I've noticed that what I look like at a GP or hospital consultation and how articulate I am is now being recorded on my record. Yet often I'm not feeling well, even if I look well. And I might be able to string a sentence together that day but have days when I'm incoherent (they ought to ask my husband!).
The most bizarre example (not involving a GP) was when my face was yellow because of jaundice when ill with Hep A. But my cheeks were still characteristically rosy so friends coming to visit were mightily confused, invariably saying how well I looked. And believe me (!) I was feeling dreadful.
It's belittling when you put your trust in a medical professional to be judged by how *they* think you look and *they* decide if you look and sound well. It's as though it's some kind of semiotic code.
Gosh interesting! Thank you helvella
When Thyroid Disease Masquerades As Psychiatric DisorderUS-based, Prospective, Blinded Study of Thyrotropin Receptor Antibody in Autoimmune Thyroid Disease
It's all in my head......Anti-thyroid antibodies, parietal cell antibodies and tissue transglutaminase antibodies in patients with autoimmune thyroid disease
It's not all in your head.
