The week it was published, this article ranked number three out of several hundred articles on thyroid disease featured on Google News.
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, I will probably never get well (autoimmune disease is like that), but I may reach a point where my disease becomes tolerable, I no longer suffer tiredness attacks and I can kid myself into thinking that I am “normal”.
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.
All you need to do is go on a diet, get some exercise and the weight will just drop off. My ex-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 and 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 he knew I was struggling and I was ill as it was shortly after my diagnosis.
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 his 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 gives me my lab results, I am reminded of the fact that the World Health Organization classes me as overweight as this nasty classification is automatically printed on them. Thanks WHO! I really wanted to know that – it’s sure to help in 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 – that’s not exactly what I would call obese, but if you like you can take a look at my Facebook pics and judge for yourself;-).
Your TSH is 1.8, so it’s within range. You’re “cured”! (as the doctor pats himself/herself 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.
That may be, but I know my body well enough to know that there was something else going on. She 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 an almost suppressed TSH, everybody is different and most patients seem to feel best when their free T3 and free T4 levels are in the top end 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 and went to our 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 listens and likes the fact that I research and know a lot about my body. He doesn’t talk down to me, which is something I find really hard to tolerate, but also something that many doctors have done in the past.
Said to my fiancé 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 Corey has probably had it for longer than I!
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 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. No thanks doc. Well nothing else is going to help you and if you don’t have it you are a non-compliant patient.”
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 gyno’s very rude receptionist who is not in any way qualified to make medical judgments, but it’s not because of what I eat. I have a metabolic disorders – namely Hashimoto’s thyroiditis. Guess what is the key symptom of this little beauty! Yup, that’s right, you’ve guessed it! High triglycerides or high cholesterol. 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 wish I were because people here can be 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!”
You’re lazy and greedy. DT’s Christina actually overheard someone gossiping about their friend like this in Starbucks. Brave Christina 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?
Gossiping about a friend’s thyroid disease when you neither know nor care what she is going through. Seriously, at a recent 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).
Don’t be so bloody hormonal. Once I was voicing my opinion on a topic and one of my FB 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 am the way I am and usually I’m pretty damn 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 FB 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 presuming 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 PMT.
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 (autoimmune) 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 forced us to change our lives, sometimes 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 a thyrella named 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.
So sad but so true Sarah. Hopefully people that are still struggling to get properly diagnosed and/or treated will read this and learn a few things to better advocate for themselves. I found that quoting thirds parties to my family and friends really helped them better understand what I was living. It helped me too to better recognize that so many of my symptoms were all connected to my TSH levels specifically. Thank you for doing what you do, I appreciate you 🙂
There are too many ignorant attitudes with regard to chronic illness and thyroid disease. People can be quite cruel with their uninformed comments and sometimes even jibes. This article was easy enough to write as a lot of it was based on my own experience and the experiences of friends and family. Thank you for doing what you do too, Donna! You’re a really good friend!:-)
what a ROCKIN’ article, sarah! this was so right on the money. so many of us have heard this stuff over and over and over. i remember before i was diagnosed going on an intensive, guided and supervised diet and exercise plan. it was professional and well done. i lost weight all right. a whole 10 lbs in 8 months!!! after breaking down weeping and despairing about what was wrong, i found out i had hashi’s. so while i haven’t stopped my efforts to be well or fit, i’ve learned not to beat myself up. and to ignore the comments.
you are an inspiration my friend!
Thank you very much, Anita. This article was so easy to write because unfortunately I’ve come across so much ignorance myself. It pains me to see people make fun of people who are overweight, assuming they need to “lay off the cake”! I’m sorry you had to go through that with your weight loss program. I know how you feel. I sporadically had gym memberships, but always gave up in the end due to lack of progress and it wasn’t for lack of trying! My parents (particularly my father) were very cruel about my weight and even my sister made some comments. It hurt very much to feel as if my own family didn’t accept me. For years I was guilty because of the bit of extra weight I was carrying and because of those who made me feel unattractive as a result of this, so when I got diagnosed finally I felt a sense of relief and the guilt lifted off my shoulders. I will never be skinny, but I do the best I can to be as healthy and fit as I can be. We need to have realistic goals and stop beating ourselves up.
You too are an inspiration, my darling!:-)
I can’t believe I forgot about this one. This is a great post. So many will be able to relate to these and not feel so alone. The isolation this disease can cause is bad enough but when you have people who you thought cared about you making crude remarks (as well as doctors), it makes it so much more difficult. I will never stop hoping that one day no one will have to experience such ignorance when trying to find answers to their symptoms and become well! There is so much inspiration in these words to help others become advocates for their health.
It was good reading my quotes again too. It shows me just how far I’ve come since those days.
You are doing a great job helping to bring awareness where it is so desperately needed!
Thank you for kind words, Lori. You really have come so far and you have also helped me very much on my own personal thyroid journey. We are not alone, but sometimes it does feel like it when we are faced with such utter ignorance and callousness. People are too easily judgemental, but they shouldn’t be because they rarely know the full story. Thyroid disease is complicated, passed off as easy to treat and often ridiculed, even by US national comedians. There is progress to make, but recently it has received more coverage in the media, so I think there is hope. I certainly do my best to raise awareness. Thank you as ever for your encouragement! It means a lot to me:-).
Sarah I may not have thyroid problems but reading this has reminded me of some horror comments over the last 2 1/2 years, which is when my doctor thinks my Fibro started. One was a visit to the hospital A&E (emergency room), as I had collapsed in pain when I tried to get out of bed. The female doctor checked my xrays and decided there was nothing wrong with me, she shouted at me that all I needed to do was go home and lose weight as I was obese and that was the cause of my problem!!! I was horrified, especially as she had left the consulting room door open, so all in the waiting room could hear her tirade at me. I will admit I walked out of there in tears as well as chronic pain. I had never felt to humiliated and embarrassed in my life.
Over the last few years I have overheard work colleagues and friends talking about me when they thought I couldn’t hear, they thought I was lazy, a hypochondriac and would do anything to get out of doing a full days work!!! I was a conductor on the trains, and I so loved my job, and hated that I couldn’t do it because of my pain etc, I wasn’t safe to be out on the line, sometimes responsible for up to 1200 passengers at a time. Those people never knew the times I went home and cried because their comments hurt me so much.
I am now 4 months since my diagnosis, and still very angry and still trying to come to terms with it all, but the one thing I can do with confidence is stick my two fingers up to that doctor and all those that made nasty comments, and say, I told you I was ill!!!!!
Thank you very much for sharing your story, which – as you said – is really quite horrific. Sometimes people’s insensitivity and self-righteousness truly shocks me! Sadly, I have heard many stories similar to yourself and I’ve also been on the receiving end of comments about my weight. In another article, I also talked about how I was even once compared to the fattest man in Britain! The “fattest” I was was a UK Size 18/US Size 14, so go figure and the person insulting me did so in my own home in front of friends even though I had specifically told him that I had just been diagnosed. He runs a gym … arsehole!!
I’m very sorry you had to give up your job and it pains me that these people were able to hurt you so much, but I know many of us have felt that way after being subjected to people’s cruel comments and jibes. It’s just not right and really ties in with the discussion about bullying that seems to be so rife in the news and on Facebook at present.
Remember: you are NOT alone and please let me know if you have any other questions or if I can help you in any way.