What happens when you're misdiagnosed?
"It felt like I was the only person who cared about what was happening to me."
I have spent the last 15 years pretty sure that there is something wrong with my thyroid. Finally, just a few weeks ago, I was vindicated and diagnosed with Hashimoto’s thyroiditis.
According to Thyroid UK: “The thing to understand about Hashimoto’s disease is that it is basically a variant of hypothyroidism, caused specifically by autoimmunity; the thyroid gets infiltrated by white cells and slowly loses its function…Hashimoto’s disease [is a] form of autoimmune thyroiditis, where the body’s defence mechanisms overact or respond dysfunctionally, and cause damage to target tissues.”
Some of the symptoms very much overlap with things that are common in other chronic conditions, including fatigue, depression, lower body muscle weakness, cold intolerance, constipation, thinning hair and dry, pale skin.
I don’t know how to explain it, but even though I know there are a lot of ways that my EDS (and standard co-morbidities) impact me, I also had a feeling that it wasn’t the whole picture. I have a significant family history of thyroid issues and so was at least aware of how they can manifest.
As it turns out, I was right. With a new doctor and more thorough testing, I was told that my thyroid was not being appropriately treated (I’d been on a very low dose for years but was then told that my levels were fine).
In April, my medication was increased for the first time, and then increased again a few weeks ago.
I have been building up my capacity for the last 5 years, so that shouldn’t be discounted, but I have noticed a marked difference in my ability to do things in the day, and my recovery times are quicker. It is giving me hope (a weird feeling) that some of my more debilitating symptoms may be helped by this.
It’s obviously still early and I don’t want to tempt fate too much - but I’m very curious to see how things go over the next few months.
I started thinking about my thyroid again (and getting it looked at outside of just the GP surgery) after talking to Hannah Hoskins of Not Your Grandma’s.
After years of debilitating symptoms, and feeling abandoned after a diagnosis of fibromyalgia, Hannah was finally diagnosed with subclinical hypothyroidism.
As it turned out, she’d been misdiagnosed this whole time, and with the right diagnosis (and right medication) her life has changed in a shockingly short space of time.
My situation is obviously different - it’s not so much a case of misdiagnosis, rather something that was missed. But I’ve been thinking about Hannah a lot recently, and the experience of what it is like being misdiagnosed.
So, I’m really grateful that Hannah very kindly took the time to share her story with us today. She talks about her experience of diagnosis, misdiagnosis, self-advocacy and how her life has changed. Not just in terms of her symptoms, but her identity, how she thought about the future, and much more.
It’s a fascinating insight into the complicated reality of fighting for answers when living with a chronic condition.
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Hi Hannah! Can you tell us a little bit about yourself please?
I’m Hannah and I run Not Your Grandma’s, a compression sock and disability company.
I started it when I become too sick to continue with my 9-5, and I wanted to provide people with products that helped them feel better (but also weren’t just grey and beige!)
It’s called subclinical because only the serum level of thyroid-stimulating hormone from the front of the pituitary gland is a little bit above normal. The thyroid hormones produced by the thyroid gland are still within the laboratory’s normal range.”
Essentially, I have all the symptoms of hypothyroidism, but don’t have the expected range of numbers used to actually diagnose it.
When we first met online many years ago, you had been diagnosed with fibromyalgia. Can you share a bit about your experience of when you first became poorly?
I had glandular fever about 10 years ago and I just never really recovered. Over the next 2 years my health just declined. I was constantly getting sick and feeling run down.
Then one day I woke up after painting the living room and couldn’t even lift the covers off my bed. Everything hurt and I felt like I was dying. I was terrified and it took me a while to go to the doctors.
At that point, I had been constantly going in for chest infections, sinus issues, migraines - all the random stuff we seem to get before being diagnosed with chronic illness.
I was mostly dismissed, told I was fine, and that there was no cause for all these issues I was having. Often the question was just ‘are you sure you aren’t depressed?’
How did you get your first diagnosis?
A GP diagnosed me with fibromyalgia, but wanted to deal with it in house. I didn’t feel comfortable with this, as I had read the best help would come from rheumatology (this was still at a time where guidelines said that you needed to be referred to them).
Once they diagnosed me, they just showed me the door and said there wasn’t much that could be done apart from lifestyle management. They suggested swimming in a heated pool, which seemed ridiculous when I was struggling to get out of bed in the first place.