Written by Sarah Downing, Butterflies & Phoenixes

The week it was published in 2010, this article ranked number three out of several hundred articles on thyroid disease featured on Google News. This article was written shortly after my diagnosis. I’m pleased to say that my health has progressed a lot since that time (I am less tired, I am on the verge of starting a new healing career, I have become stronger and more toned and my body is more balanced), but I can honestly say that I or someone close to me has experienced all 12 of these things, and no doubt many of you can relate!

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 who was recommended on a German list of recommended thyroid doctors. 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 blogging and researching to raise awareness, initially for Dear Thyroid and then for her own blog Butterflies & Phoenixes alongside acting as Blog Editor for ThyroidChange.

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.