12 Things You Should Never Say To or About a Thyroid Patient

12 Things You Should Never Say To or About a Thyroid Patient

It is a pleasure to include my friend and fellow thyroid advocate Sarah Downing at Hypothyroid Mom.

Written by Sarah Downing

I

Get well soon!/Are you better already? You may mean well when you wish me “get well soon!” and it is indeed a kind sentiment, but sadly it makes me feel as if you are wishing away a common cold. Realistically, with a chronic illness such as hypothyroidism, I may never fully recover, but I may reach a point where my disease becomes tolerable, I no longer suffer tiredness attacks and I am able to experience “a new normal”, but things are unlikely to be as they were before.

II

Buck up/Be less tired next time. Drink some Red Bull and you will feel just fine. Oh yes, I have heard those very words from tactless friends of ours. Not only am I physically unable to “buck up” when my thyroid is playing up, but swigging Red Bull or coffee could very well send my adrenals into overdrive. Thyroid disease often comes hand in hand with adrenal imbalances, so many of us would do well to avoid overstimulation by overconsumption of caffeine, taurine, etc.

III

All you need to do is go on a diet, get some exercise and the weight will just drop off. My former gyno told me I needed to go to a dietician. I went apeshit on him and told him that I have been watching what I eat ever since I can remember and am sick and tired of feeling guilty every time I put a bite of food in my mouth. I feel betrayed by my thyroid as I have been robbed of so many years of body confidence. Every time I worked out at the gym regularly or walked an hour a day, the weight loss was sooo slow and, in fact, when I walked an hour a day and put on weight, that’s when I figured out that something was not quite right. By this time, I had already relegated myself to a life of being “just a little bit fat”, as Bridget Jones puts it. Unlike me, however, she seems able to lose weight through dieting and exercise. It’s getting better, but it’s so bloody slow when your metabolism a.k.a. fat-burning mechanism is having a hissy fit. The most hurtful comment I received was from a friend’s nasty husband who thought it would be funny to compare me to Britain’s fattest man who couldn’t get out of his chair (there was some news story on it). He was at our house, at our party and still he thought it appropriate to insult me in front of everyone – and yet he knew I was struggling and I was ill as it was shortly after my diagnosis … needless to say, I ended up cutting both “friends” out of my life, particularly after I confronted my friend on this and he defended his partner, failing to see what he had done wrong – the lesson in this is: don’t be afraid to kick toxic friends to the curb.

IV

BMI = 30. WHO classification = obese. As we well know, some docs need to look beyond the numbers (they are equally obsessed with numbers of lab tests such as TSH, but a good doctor pays attention to what is in front of their own eyes – that is important evidence too). Not only are many docs way too obsessed with the “value” of the BMI (rather reminds me of the TSH), but every time my gyno gave me my lab results, I was reminded of the fact that the World Health Organization classes me as overweight as this nasty classification was automatically printed on them. Thanks WHO! I really wanted to know that – it’s sure to help me on my road to recovery! The simple truth is that the BMI doesn’t work for everyone and I am one of those people. If you have lots of muscles or a big bust, this may well skew the measurement. The biggest I’ve ever been is a US Size 14 – and that’s not exactly what I would call obese – in fact it’s the dress size of your average American woman.

V

Your TSH is 1.8, so it’s within range. You’re “cured”! (as the doctor pats themselves on the back).

Me: But doctor I still feel tired. I think I need more thyroid hormone.

Doctor: Don’t be silly. You’re just emotionally exhausted after the death of your mother-in-law.

Looking back, this was partly true, but I also knew my body well enough to know that there was something else going on. My doctor failed to listen to me, including my request to test my Free T3 and Free T4, claiming that Free T3 is unimportant. I’m tired of hearing of doctors who think they have successfully treated their patients once their TSH is within range. Besides the fact that TSH can be very deceptive and is sometimes affected by other hormones or medicines, it should be about finding someone’s feel-good range. Many patients feel best with a TSH below 1 and some even need it to be suppressed to feel their best. Everybody is different and most patients seem to feel best when their free T3 and Free T4 levels are in the middle to the top of the normal range. In the end, I realized that I wasn’t getting anywhere with our old doc and also that I knew more about thyroid disease than she did, so I switched pretty fast to another doctor. My doctor changed my meds and worked with me to make me better. He listened and liked the fact that I researched and knew a lot about my body. He didn’t talk down to me, which is something I find really hard to tolerate, but also something that many doctors had done in the past.

VI

Said to my husband Corey by our old doctor: I took your TSH. It’s 1.5 and it’s within range, so you don’t have thyroid disease. She didn’t bother with a Free T3 or Free T4 test and she was obviously unable to read an ultrasound despite being an internist. My gut instinct told me that she was wrong, wrong, wrong, so I took Corey to my next appointment with my new doctor, hoping he would notice something. He did – he suspected hypothyroidism, did the tests and sure enough it turned out that Corey had probably had it for longer than I!

VII

It’s all in your head! Thyroid patient C describes herself as “living proof that tests don’t mean squat.” Despite feeling like death incarnate, she tested normal or slightly hypo. The inflammation of her thyroid caused a parathyroid tumor, only for the ignorant doctor to tell her: “You do not have a parathyroid tumor, your thyroid is fine and you need to see a psychiatrist!” Sick and upset, C left to find a proper surgeon who removed her parathyroid glands. Luckily, it turned out not to be cancer, but – as C puts it: “I am sure that if I had continued to listen to docs and went to a shrink, it certainly would have turned into it.” Sadly, so many patients with thyroid disease are fobbed off by doctors as being mentally abnormal. We are not! We are just sick and desperate for the right treatment, and frankly when so many doctors have put you through so much shit, there comes a point where you truly feel as if you are going mad and, if you weren’t depressed before, by the time you have had to deal with your disease practically on your own with next to no alleviation of the symptoms, you are not unlikely to spiral into a deep depression. Despite what some people think, we thyroid (and chronically ill) patients are strong, resilient and supportive. We have to be the first two merely to survive and the last because chronic illness breeds empathy.

Thyroid patient L told me how her past doctors rarely took her seriously, which is why it took her so long to finally get diagnosed. Some of her docs truly were bundles of joy: “I think you have depression clouding your judgment. Your word finding problem and forgetfulness is just anxiety. Your nerve pain can’t be that bad, but it probably has changed your nervous system physiologically by now so you will never get better. You need electroconvulsive therapy.” L’s response: “No thanks doc.” L’s doctor: “Well nothing else is going to help you, and if you don’t have it you are a non-compliant patient.”

VIII

Oohh, your tests results just came in. Your triglycerides are still slightly elevated so you need to cut down on those vegetable fats. Not only was this said to me by my former gyno’s very rude receptionist who is not in any way qualified to make medical judgments, but it wasn’t because of what I eating. Hypothyroidism is a known metabolic disorder with the key symptom of – you’ve guessed it! – high triglycerides or high cholesterol, and at the time I hadn’t been on treatment for long enough to eradicate this issue. Of course, knowing what I do about this, I defended myself and told the receptionist this only for her to retort: “I’m fed-up of people using their thyroid as an excuse. So you think you know better than me, do you?” If I was less polite (and sometimes I wished I were because I experienced many Germans – particularly those in the medical field – as incredibly blunt, and some to the point of being cuttingly rude at times), I would have retorted: “Yes actually, I think I do. It is my bloody body and maybe you should pick up a medical book every now and again and keep out of patients’ affairs as you are not qualified to diagnose or judge them!”

IX

You’re lazy and greedy. My friend C actually overheard someone gossiping about their friend like this in Starbucks. Brave C went up to them and put them straight. They didn’t take kindly to this, but they needed to be told that they should be supporting their “friend”. Isn’t that what friends are for?

X

Gossiping about a friend’s thyroid disease when you neither know nor care what she is going through. Seriously, at a party we overheard a silly girl trying to impress a potential shag (hook-up opportunity) with a gem about her friend’s upcoming RAI uptake test. Curious, I turned round and asked her if she had thyroid disease and proceeded to explain to her what this test is, assuming she’d be interested – after all, she must be if she was talking about it so avidly. Sadly, her expression went blank. Even more sadly for her, the guy she was trying to book a shag with took that opportunity to walk off (while she had her back turned talking to us).

XI

Don’t be so bloody hormonal. Once I was voicing my opinion on a topic and one of my Facebook friends didn’t like it, so instead of telling me he disagreed, he wrote on my FB wall something about “I know that you have hormone problems …” You know what? I don’t want to be judged because of my illness. I’m usually pretty reasonable, but when I get comments like that, I don’t feel like being that reasonable anymore. It was both tactless and indiscreet and so I removed him from my Facebook friends. I don’t need people making fun of me and assuming everything I say is because of my hormones. Likewise, if I get mad, it may just be because I am irritated and angry, not because my thyroid told me to. It is true that our thyroids can affect our moods, but it all depends on the individual and I don’t like people assuming this is the case just because you have a hormone disorder. It’s the same case when men have a go at women for their PMS.

XII

You brought this on yourself! Thyroid patient S tells the story of one thyroid patient who as a child was told that telling fibs would cause their throat to swell up so that they couldn’t breathe and that they would die because they were bad and lied. What a hateful version of the Pinocchio fairytale! The child was scared to death, triggering a severe asthma attack, which made them think they really were dying. We are never at fault for falling ill with thyroid disease. It sucks and sometimes it feels like a curse, but many of us are admirably able to see the positive side of all this – for instance, in the fact that such an illness has brought us all together, enabled us to make so many precious friends and has made us change our lives, often for the better.

Because of the terrifying lack of public awareness about thyroid disease, it is often treated as a joke and many thyroid patients feel victimized because of the prejudices and insults they are subjected to. I’d like to finish with a quote by thyroid patient L: “I talk to so many who are afraid to speak out about what they have been through. They are ashamed and fearful of people knowing who they are. It’s a form of discrimination really! There’s lots of pain here because people so want to blame you instead of your illness, and yet you have no control over how it affects your whole body. Blame the illness, the medical professional, but never the patient for their body turning on them. We are not at fault here – it is the fault of the thyroid gland and its hormones we so desperately need. Physically, mentally we are prisoners of our illness until there is a cure or at least good meds that don’t add to the problem.”

I would be very interested in hearing about your experiences. What sort of comments/treatment have you had to face in the past and how have you dealt with them? We can certainly learn from each others’ approaches and sharing our experiences once again makes us realize that we are never alone.

About Sarah Downing

In 2009, Sarah was diagnosed with hypothyroidism which changed her life for the better as it finally gave her answers for her bone-crushing fatigue and progressive weight gain, and taught her a lot along the way. A passionate writer, poet and translator, Sarah decided to use her gift to help others by starting Butterflies & Phoenixes. Sarah believes in taking a proactive approach to illness and turning negatives into positives. Her journey has led her to study massage therapy in order to help others because she believes that “wounded healers” provide the empathy that many people need. Sarah’s experience in living in England, Germany and the US also enables her to identify with the varying situations of international patients.

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About Dana Trentini

I founded Hypothyroid Mom October 2012 in memory of the unborn baby I lost to hypothyroidism. Hypothyroid Mom is for informational purposes only and should not be considered a substitute for consulting your physician regarding medical advice pertaining to your health. Hypothyroid Mom includes affiliate links to favorite resources including the Amazon Services LLC Associates Program. Connect with me on Google+

Comments

  1. Martha Morris says:

    I have been on thyroid medicine since 1972 (when I was 24) and suspect I had it long before that. I have always been a lot more tired than my sister’s, have had a terrible weight problem (all these years yo yo dieting), and not being able to keep a stable weight. My mama always told me i was lazy. I recently had a thyroid test and my tsh was .569 which in on the very low end of normal. Would it not occur to my doctor that with my symptoms that maybe I need for my tsh to be more toward the high end of normal just to try to help me feel better. I don’t eat pasta, bread, rice, potatoes and go to exercise classes 10 hours a week. Some of the classes are really strenuous. I’m absolutely exhausted after these classes. I will be 70 in March and would really like to have a normal life.

  2. TSH IS FINE = So no reason for the weight gain. Need to exercise more. NO SORRY it was Thyroid Cancer. There is one that I hate more than anything and have heard several times. “Oh don’t worry you got the GOOD cancer” erghhhhhh…. No cancer is every good and would swap places with them to live one day without a thyroid and then try saying that to me again.

    • Shannon Davis says:

      Totally agree. Same thing happened to me. Very frustrating. I had to research everything myself, and finally found a FNP that diagnosed me. Good luck, and take care.

    • Heather says:

      I got the same thing said to me. Talk about insulting. I’m sorry but just knowing it is in your body is horrible enough. I had the same reaction when I had Cervical cancer and especially when I had Malignant skin cancer. Yes, that was a great cancer, especially with the 7 inch long and inch wide scar going down my back and a scar by my armpit because there was 6 nodules in my armpit they had to get out that were cancerous connected. Now I am permanently numb from shoulder to elbow. People are ignorant and if they don’t have it then it just doesn’t exist. People throw around words like Bi-polar making fun of people if they get in a bad mood all of the sudden. I don’t have it but would never be so sensitive to say anything like that. It’s so awful-!!!
      Sorry, I went off a little bit I’ve been told things before, even by my husband and it hurts to the core. I’m very passionate about this. Good health to all and huge hugs!!!

  3. Helen berry says:

    I have lost count of the number of times people have said (and yes sadly most of the time people close to me) ‘if you just went and did something physical you would feel better’. ‘Stop eating so much crap and you might lose some weight’. Now I just don’t bother telling anyone and just smile and nod when they start doling out life advice.

  4. Was ‘nuked’ at 13.
    Never diagnosed.
    Entered my 20s … Was going ballistic. Still no diagnose.
    My 30s were about: loss of right eyebrow, bulging eyes, gastrointestinal issues, fatigue beyond me, swelling, hot , cold, hair didn’t care , southern region didn’t want any participation with the rest of the body. Was diagnosed Hypo- Hashimotos.
    My 40s , roller coaster ride on my thyroid levels and then my ‘Darth Vader’ voice made it’s appearance, twice in a year…
    Felt like I had something in my throat and it hurt to swallow.
    Went over to the Endo, ultrasound and needle biopsy. Results: cancer. Action taken: thyroidectomy.
    Now in my 50s..?
    No idea on how my body will react on the next day!
    I’m in the fitness field and it’s hell to keep up with the fatigue, the cramping, the heart, the brain fog and especially how my muscles respond… Which sometimes it’s: STAY IN BED BECAUSE WE AINT MOVING!
    Now… I depend on a small blue pill to keep me ‘normal’ because my ‘ butterfly ‘… Has gone to far away gardens!

  5. Kathy Calhoun says:

    I have Graves’ disease and I struggle with joint problems and weight gain.Crave sugar really bad.Wish I had more answers

  6. I had part of my thyroid removed in 1979 and have almost all of the above things said to me by well meaning friends and doctors. I have my T3,4 and 7 checked annually and there are times when my dosage has to be adjusted because the numbers are off. You do get accustomed to the problem and I still get questions about the scar on my neck. Thank you for the article.

  7. Martha Hill says:

    I was diagnosed with hypothyroidism about 3 years ago and put on thyroid medication 1.25mg. My TSH levels have returned to normal with the medication, but the symptoms continue. I have never felt my condition was controlled even though the blood work indicates normal as all the symptoms remain and even worsened. My doctor says my fatigue, brain fog, hair loss, brittle nails, skin conditions, facial hair, intestinal problems, weight gain are the results of other reasons; namely, lack of exercise, depression, diet, or my imagination. My medication has never been changed since it was prescribed 3 years ago, My doctor tells me my thyroid is fine and largely ignores my symptoms. Except for controlled hypertension and osteoarthritis, I am otherwise in good health. I am 76 years ol and barely existing, I have no energy to do anything even if I was motivated to participate in life. Just trying to cope with all the body changes and the inability to think properly is all I can manage right now. What should I do? I feel helpless and lost in this fog with no help or hope from my doctor.

  8. Joan Poletti says:

    Don’t forget about checking for Reverse T3! If you are under stress (lol, who isn’t?) then your T4 may be converting into reverse T3 instead of T3. It’s your body’s faulty idea of how to de-stress you by making you tired so you rest instead of do too many things! Kind of like when you didn’t have enough thyroid hormone your body made you hungry so you’d eat and then “you could have energy.” I remember having a perfectly good lunch and then feeling like I could eat it all over again. And I could eat a dozen doughnut for breakfast if I let myself. It was amazing when I got thyroid treatment that I could feel full after a normal meal!

  9. Thank you all for showing me I am not alone, my doctor says I am all fixed,will not send me back to the hospital and that I am imagining it,I am crying now and don’t no how I can go on.
    But I will try,thanks again.

  10. Sharlene Hamilton says:

    Omg all these stories resonate strongly with me. Im 56 yr old female was diagnosed with hypothroidism after the birth of my third child. I was 30. Have been on levothyroxine ever since. Have been diiagnosed with everything mentally from bi-polar2 to bpd to depression to anxiety. I have been on most psychiatric drugs to “tame” my so called mental illness and am now drug free. I always thought that it was my thyroid causing these problems. I am almost through the change of life thank God. Thank you for your website and msybe now I understand that Im with like minded women suffering with the same hellish disorder. Bless your heart, Sharlene❤

    • Kay Fisher says:

      At 33 yrs old I started having hand tremors than one day in front of my husband I had a serious seizure. In the ER a doctor realized it was my thyroid. I was diagnosed with hyperparathyiodism. A ultrasound showed tumors on my parathyroids. The doctor had to do a parathyriodectomy, removing all four of my parathyriods. Now my thyroid didn’t have those helpers anymore to function properly! But no doctor told me at that time I would need medication for my thyroid. I suffered years of depression, feeling like I was in hole I couldn’t get out of and cried in the shower bc I hide my feelings from my sons 18,16 & 13 and husband. It wasn’t there fault I thought I was losing my mind. It was over twenty one yrs later at 54 yrs old that finally a doctor listen to my symptoms, she took a blood test and was horrified when she saw my thyroid levels. She told me she didn’t know why I haven’t killed myself. I told her I didn’t have the strength to do that! That’s when I enter the world of Synthroid medication and starting feeling like my old lively self, laughing again and watching my sons get married and now 3 wonderful grandchildren, one on the way! One thing I did learn from this experience is don’t aloud other peoples comments like the ones in this article deter you from being proactive about your health! I did and it took me too long to get my help for my now hypothyroidism. I’m 63 now and the last ten years have been good.

  11. Elizabeth Sweeney says:

    I feel so sad and angry reading these stories, so much unnecessary suffering.
    I would never have know I had Thyoid problems until I read an article in Marie Claire.
    I was tired, overweight , sluggish, painful joints etc. However my GP dismissed my blood tests airily as being ‘borderline’ and we don’t bother to treat that !
    After reading the article I was amazed to see that I ticked all the boxes. However I had no idea how to proceed . At the end of the page long article contact details for International Thyroid Group (now known as Thyroid U.K.) were listed. I rang the no listed and spent over an hour talking and listening to an amazing lady.
    Her name was Betty Bell and I am forever indebted to this wonderful woman ( that was almost 18 years ago!)
    Betty informed me that she needed some information ie whether I was Hypothyroid or Hyperthroid . Of course I had no idea , I barely knew where the Thyroid was located at that
    stage. I hitailed it to My GP s surgery : where a young locum doctor looked up my blood
    test. She informed me I was ‘borderline’ Borderline what? Oh hypothyroidism or underactive Thyroid.
    When I enquiried what the treatment for this was she simply said Oh we don’t bother to treat borderline hypothyroidism .
    I contacted Betty again and she sent me a pack of incredible information on Hypothyroidism . It was eye opening, all my symptoms pointed to underactive Thyroid.
    Where to go then. I picked up that what I needed was a referral to an Endoctrinologist.
    I attended a private Clinic. The Ulster Independent Clinic, where Prof Atkins prescribed 150 mcg Thyroxine. This is a simple synopsis of my history. I have had many ups and downs , especially when dose was reduced. However I have found many supplements which while not medicinal, do support the Thyroid . I would happily share this information privately , because while many work for myself they may not work for everyone .
    Unfortunately T3 is not prescribed in this country , although it is commonly used in other European countries such as Germany .
    I feel well and healthy on my present regime, but have had to research extensively and work hard to keep on top of the underactive Thyroid .
    I wish you all well and have great sympathy for those of you who are finding it all challenging

    • They do prescribe T3 in the U.S. I’ve been taking Liothyronine for about 3 years. I got it from a naturapath, ordered from a compounding pharmacy. It made a huge difference. Levothyroxine sent me to emergency twice with horrible anxiety, and high blood presssure. It didn’t change from T4 to T3 like it was supposed to, so the T4 kept going up and the T3 kept going down. I finally had my doctor change my prescription as the compounding pharmacy was way too expensive. I don’t have the anxiety any more, but I’m still dead tired.

  12. So true! Been there …done that! Frustrated. . …for YEARS! Can relate to so many of you. My heart hurts hearing that you were there too. Can relate to the Hashimotos. I must have had it for many years. So glad for the AWARENESS! Keep talking & working towards even more awareness & understanding. I am doing well on the New Zealand bovine desiccated hormone. Could feel her pain in article. Don’t suffer in silence! (Would tell her the extra language detracts from her good message.) God bless You dear fellow travelers.

  13. Janice Rowe says:

    I also had thyroid cancer thus total removal of my thyroid,I am on 75 micrograms of Eutroxsig daily,my Doctor seems to think this is fine!..I wonder is it?..I am still so tired and my weight keeps piling on,I do exercise well, I walk for 20 minutes a day any longer and my ankles ache!..I don’t over eat and still I cannot lose any weight,I am so depressed and feel so fat and lifeless all the time..

  14. Aaron Scarpa says:

    Thank you for this post. I am sorry that you experienced so many instances of people being rude about hypothyroidism.

    Last summer (May 2017), I was suffering crushing depression. I chalked this up to bring burnt out after my first year of medical school, and the psychiatrist I visited told me the same. His recommendation was exercise. Made enough sense, I played two varsity sports in high school and was in outstanding shape until a point a few years back that my father reassured me was “just my metabolism catching up with me.” My doctor scoffed when I suggested checking my thyroid.

    Come February, I get these pesky headaches that won’t go away. Low and behold, it was Hashimoto’s! While things are way better with replacement therapy (more energy, testosterone levels up, and now having the energy to train for a half-marathon), I still have moments. If I feel too tired after a long day, my friends will say something like “take an extra levo!”

    Some good has come of this though. When I see patients and hear their stories, I feel like I can make a better connection with them. It’s a tough fight we face, but we’re all in this together!

    And yes, thyroid affects us guys too!

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