This ‘open letter’ has been inspired by the large amount of thyroid patients who are told by doctors that their symptoms are ‘all in their head’, dismissed and made to feel like hypochondriacs. I experienced this myself, and on such a day, I came home, ordered the new thyroid medicine I wanted to try and set up this blog.
It’s not all in my head. I’m not a hypochondriac and I’m not making this up. I may well be depressed, yes, but the depression isn’t the cause for all my symptoms. Ten years ago, depression wasn’t a condition a lot of doctors recognised, yet now, you’re quick to pin anything you can’t explain on to it and give us another prescription for more drugs. Doctors who behave this way towards patients tend to do so because it’s easier for you to pin the problem on us, the patient, so that it’s not a problem with your own inability to find answers.
I tell you I have brain fog, get confused and have a loss of mental clarity. I tell you my whole body aches with every breath I take and I’m fatigued beyond despair. I tell you I am gaining weight without any reason and my ability to handle stress is next to nothing.
You tell me that these symptoms cannot be from my underactive thyroid, because you’ve ran the ‘appropriate tests‘ and they show I am now ‘normal’. So you try to manipulate me in to thinking that all of these are down to being depressed, because symptoms of depression can include feeling tired, confused and achey. You insist that they’re just ‘all in my head’ because the test results suggest they must be.
But what you’re forgetting is that I am an individual. I am not a number, a test result or an attention seeking hypochondriac.
I am a person.
Sometimes the test results don’t give the full picture, especially if you’re just testing TSH without the other elements of a full thyroid panel, and especially if I am showing other symptoms and/or on T4-only medicine like Levothyroxine. I know you’re precious about Levothyroxine, but truth is, it doesn’t help a lot of us. The same goes for your ‘gold standard’ TSH test.
What you don’t have an answer for are the physical symptoms I present. My high blood pressure, migraines, constipation and weight gain. Surely they’re not all in my head? They can’t be. As you pass me a leaflet about anxiety for the blood pressure, diet for the constipation and weight gain and suggest yet another drug to mask the migraines, I feel hopeless. I wonder why I even bother coming to you, when it uses up so much of my energy; physically, socially, mentally and emotionally.
And I get nowhere.
When you’re telling me that the test results show I am ‘fine’ and so it must therefore all be in my mind, what you fail to realise is that the test results should only form part of my treatment and diagnosis. Other symptoms lingering suggest that further testing needs to be done, but if you’re not sure yourself, refer to me to a specialist or suggest that I see another doctor at the practise who may be more help to me. If someone close to you – your other half, parent or child – was presenting these symptoms and on going issues, despite ‘normal’ test results, would you tell them it was all in their mind and that they just have to move on? Would you pump another drug down their throat to mask it? I didn’t think so.
You’re a doctor, and doctors are supposed to show care and empathy. You’re supposed to want to help me. Implying that I am somewhat mad or in a sense, lying, is not what a doctor’s response should be. Please, refer me to a counsellor, therapist or psychiatrist, and you’ll see that it makes no difference to these symptoms. I’m not being negative, I’m just demonstrating that I can distinguish the difference between my mental and physical symptoms and that I know my own body best. Even if you do patronisingly try to convince me otherwise.
What I have also noticed is that if I am to take someone close to me in to my appointment with you, who has known me for several years, you’re more likely to listen. Why should it take a second person to ‘validate’ what I am telling you? And this doesn’t go for all doctors, but some have been known to talk to this other person as if we, the patient, were not in the room. Go ahead and tell my partner/friend of several years that you think I’m confusing my mental symptoms for physical ones. Patronise me some more.
For years, hypothyroid patients have been told that all these other conditions and symptoms they develop alongside their hypothyroidism are just ‘how it is’, and in the UK especially, we’re given unlimited free prescriptions for life once we receive the diagnosis and a prescription for Levothyroxine. That’s how well recognised it is – that we often develop other problems when hypothyroid and on T4-only medication. The problem is, we don’t have to live this way and we shouldn’t have to. Heck, we don’t have to.
As patients, we will always remember the doctors who refused to listen and kept us unwell. The ones who bat us back down when we tried to get up. The ones who made us feel unimportant and crazy. Likewise, we will always remember the doctors who were understanding and helped us on our journey to good health again. If you don’t know the answer or don’t know what to do next, just say so, instead of using your ‘go-to’ diagnosis of stress or depression that isn’t productive and actually only makes things worse. We’d appreciate the honesty. We’re supposed to be working as a team, after all.
However, what I will say is this:
I will prove you wrong. I will not settle for anything less than what I deserve. I deserve to feel well, listened to and taken seriously. Your lack of empathy and inappropriate behaviour towards me and my plight will spur me on to make progress myself. It will encourage me to become my own thyroid advocate and it will empower me to embrace the control I do actually have over my health.
Reading this as a doctor and feeling offended? Well, maybe that tells you something. If you’re a doctor who listens, respects and works with your patients, this shouldn’t offend you, because we’re clearly not referring to you. If you do feel offended, then it speaks volumes about your possible attitude and you’re clearly feeling that this could be you. You don’t have to treat us this way.
Sometimes all of these negative posts about doctors can make it seem as if we don’t like any medical professionals, but truth is, with this health condition, we tend to experience more toads than princes with each medical appointment, and we’re far more likely to take a form of action on the negative experiences over the good ones.
-Rachel, The Invisible Hypothyroidism.
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I run a Facebook group, called Thyroid Family: Hypothyroidism Advice & Support Group. This group is for underactive thyroid/hypothyroidism patients only, and not medical professionals or anyone else. If you have any questions on living with hypothyroidism, or want some support, help or advice, please join us.
I also run a group for the spouses, partners and other halves of hypothyroid patients, called Hypothyroid Patients Other Halves – Support & Advice Group. This is for the other halves only and not patients.