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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 website.
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. A couple of decades 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.
Medical professionals who behave this way towards patients tend to do so because it’s easier for them to pin the problem on us, the patient, so that it’s not a problem with their 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 hypothyroidism, 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 achy. You insist that they’re just ‘all in my head’ because the test results suggest they must be. (read my article about medical gaslighting here)
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.
TSH serves as an average read out over the previous four to six weeks of thyroid levels but it doesn’t give the full picture on its own.
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.
Lingering symptoms 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 ongoing 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, because they are not down to depression. 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 or 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 batted us back down when we tried to get up. The ones who made us feel unimportant and crazy.
Likewise, we will always remember the medical professionals 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.
I am very thankful for the doctors and medical professionals I have in my support circle nowadays, but it has taken years to find them.
Rachel, The Invisible Hypothyroidism
Related post: 11 ‘Harmless’ Things Said by Doctors That Actually Hurt Thyroid Patients
You can click on the hyperlinks in the above post to learn more and see references to information given.
What would you write the doctor that has dismissed you? Let me know in the comment section below.
The book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired, which covers how Rachel went from a very poor quality of life with hypothyroidism, battling doctors and still unwell on thyroid medication, to finally thriving again.
LizFebruary 8, 2023 at 12:44 pm
This is my partner to a T. We gave 1 Dr a print out of Hashimotos and Thyroid symptoms, told her he had all the signs, but because his blood tests were “Normal” she told us not to use Dr Google. 18 months later his bloods showed red, and he was diagnosed . If she had taken more notice earlier, his symptoms may have not been so severe.
JanetMay 30, 2020 at 1:03 pm
i came upon Rachaels site when online looking for IBS problem. One place lead me to another place …one website lead me to another etc.I am sitting here sobbing because i have read and learned more in the past half hour than in YEARS of seeing doctors. I have hypothyroidism and a nodule which has been biopsied and is benign. I feel like TOTAL crap EVERY day. My vit D level was SEVEN !!! i am taking 50,000 units of D .One pill a week for 8 wks . After being tested my level was at 30. So i am taking 50,000 units again. I have also had to have iron infusions (3) last year. My hair is falling out, I have gained 50 lbs .. my legs and feet swell , my brain fog is so severe i sometimes can not understand what the doctor says to me or even in everyday life what people are talking about. It just all goes around in my head. I am very depressed and have been assigned a therapist . we have had 3 sessions over the phone because of social distancing . My heart checks out okay . I need to get someone to connect all the dots. One doctor says do this, then another says do this, and I feel like I am going down the rabbit hole. I am going to buy your book .It will be a start i feel in understanding what is happening to me. I am 68 yrs old and have lost my spunk.. all i want to do is sit in my chair because it is an effort to even go grocery shopping anymore. I have a business . I make jewelry and do mosaic work and sell my pieces in 3 stores on the jersey coast in a shore community. Thank God i was given a gift like this . It is the only thig that keeps me sane I get lost in my work and hours go by. Sadly though .. Unless my legs are elevated the ankles and feet swell ,I can not make my pieces sitting with my feet elevated It is just not possible . So now that is being compromised. I believe everything is connected ,but i need to learn some facts so i can speak intelligently to my primary care doctor and ask for certain tests. I know i have rambled , I thank the Lord for this day , and for leading me to this site.
Sharon CoxJuly 22, 2018 at 7:21 am
Excellent letter, I wish I could write like that, x
Rachel HillJuly 25, 2018 at 11:31 am
Aw, thank you <3
Carley VerbeckJuly 9, 2018 at 6:52 am
Now that is a great letter. I can easily tell loads of time and effort went into it.
Rachel HillJuly 17, 2018 at 5:32 pm
Ah thank you Carley!
MarilynOctober 21, 2016 at 11:54 am
I took Thyroxin for 13 yrs until I became toxic local pharmacist told me to cease it.Unfortunately the tremors,screeching tinnitus,falls,pins & needles in feet & hands,incontinence, painful muscles & feet,migraines,nausea,palpitations,profound fatigue,sweating,anxiety,internal vibrations continued.i saw 15 Drs 7 specialists ,2 brain & thyroid scans ,a battery of blood & urine tests all to no avail.6 mths later I saw a diligent holistic GP who confirmed my diagnosis vitamin b12 deficiency with genetic mutation MTHFR,liver & gut inflammation,low cortisol.3yrs of weekly injections methyl b12 I am now back at work thank God as a midwife but unfortunately My hubby & I have permanent nerve damage thanks to delayed treatment.I urge everyone to check b12awareness.org for life saving facts if you are suffering any of the above symptons.