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Flying With Broken Wings: 12 Things You Should Never Say To or About a Thyroid Patient
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, 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”.
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 gyno, before I loved him as much as I do now, 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.
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 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;-).
V
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.
VI
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!
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 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.”
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 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 two metabolic disorders – namely Hashimoto’s thyroiditis and PCOS (Polycystic Ovary Syndrome). Guess what key symptom these two beauties have in common! 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!”
IX
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?
X
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).
XI
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.
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 (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.
—
For those of you who would like to read more on this topic, take a look at Joanna Isbill’s article on what you should and shouldn’t say to someone with thyroid cancer.
Tags: 12 things ou should never say to or about a thyroid patient, BMI, Dear Thyroid columnist, don't be hormonal, drink some red bull for your thyroid, exercise to lose weight, Flying With Broken Wings, get well soon, go on a diet, gossiping about a friends auotimmune thyroid disorder, it's just your thyroid, thyroid disease is all in your head, TSH is within range and you're cured, WHO Classification obesity, Written by Sarah Downing, you brought your thyroid disease on yourself
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49 Responses to “Flying With Broken Wings: 12 Things You Should Never Say To or About a Thyroid Patient”
Leave a Reply to Lori
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Sarah, I just loved reading this. You know exactly how to word your articles so that we can relate to every word you say 🙂
As you know I totally agree with your comments….especially ‘v’ re the doctors!!! I have experienced that scenario on so many occasions. I totally relate to you on that one and so many others you have written about this week. We all need to get every doctor, endo every medical person in this world who think they know all their is to know about the Thyroid disease and put then altogether and tell them to go back to medical school and learn how to treat the Thyroid properly and LISTEN to their patients WHO KNOW exactly what they are talking about and get them the proper treatment they need, not fobbing them off or belittling them and putting them down for trying to get the best treatment for themselves.
Also those so called people who are classed as family and friends who think they have the right to tell us that we have let ourselves go in terms of ourselves and criticise us for putting on weight, having no energy and worst of all telling us to stop being lazy and get on a diet or get to the gym and do some exercise when all the time you feel like staying in bed all day cos you don’t have the energy to get up and when you do you have to force yourself to have a shower and get dressed!!! They make me so mad!!!
Right have now had my say LOL back to trying to find a way of getting through to my doctor to try and convince her that I don’t think my Thyroid is stable and would prefer to see an endo doctor!
Looking forward to next weeks column
Love Miriam xxx
Thankyou for posting this, this is exactly what I have been receiving… I may have had thyroid problems since a little girl, I was an overweight child and then suddenly lost alot of weight, yo-yoing for a few years.
After the birth of my son – and a few telltale signs during pregnancy, I now know AFTER having him – I was never tested for any thyroid problems even though its supposed to be standard. I had hypoglycaemia and was unconscious for hours because my body didnt want to cope, iron problems – as many pregnant women do – anxiety, and towards then end of my pregnancy very high blood pressure, yet no one tested me! I am lucky my son is perfect because something could have gone wrong!
Then after he was born I wasnt right, I couldnt leave my house without panic attacks, I had all of the thyroid symptoms and was told I had post natal depression.
I was finally diagnosed with Hashimotos after 6 months and demanding blood tests be done! But my TSH is now normal, or slightly hyper again and my doctor tells me im fine, I dont feel fine thanks! Even my own father who is a doctor keeps telling me its all in my head because I refuse to drive because my eyesight is bad and I get too dizzy!
I’m so sick of my family making jokes to where when anything goes wrong or I make comments about anything its followed with ‘..because of my thyroid’ in chorus by my everyone. It’s not an excuse and I dn’t yuse it as one, but I do feel shit!
I don’t think anyone takes thyroid disease or cancer seriously, even worse for disease, as cancer is something people respect more and people assume because I have a disease it can be *cured*.. I myself believed this as it was told to me be doctors, no one told me it was chronic and I would have this forever. But in all the ways that we all came to the relationship with have with our thyroids- or lack there of I want to spread more awareness, I am just unsure how I am able to go about doing this!
I want to print this out and give it to people! :p
I love this article. I have some friends that think this things of me. My husband understands,which helps. If he did not,I would not have married him. Happy Father’s Day,Scott. I love you
My lovely Miriam,
Thank you as ever for your kind comments! I know that the above are things we talk about all the time on DT, but I thought it might help to put them all into an article to enable us to have a more focussed discussion, but also to educate those who don’t have thyroid disease, but who are curious as to the obstacles that we face. Anyone with a loved one with thyroid disease needs to know about information like this. That is why I am so very proud of my father at present. I am teaching him all about thyroid disease, so that he can help and support my mother. He is also reading a whole lot of stuff on the net.
Doctors need to regularly update their training. Their is continuous progress being made in the medical arena and I believe there should be a law that obliges doctors to somehow visit conferences or take further training courses so that they remain on the ball as to what is going on.
Those ignorant people who make nasty comments about our weight are just that – ignorant. We needn’t give them any power by actually listening them as we are the ones who truly know what is going on with our body and sadly I have actually come to the conclusion that for some people there is no point trying to educate them. They just don’t give a shit or are too closed-minded to want to learn.
I am wishing you lots of luck in getting through to your doctor. I know you haven’t been feeling well and I sincerely hope that things get better for you really, really soon!
Love,
Sarah
Dearest Alisa,
I am sorry to hear that you have been battling with thyroid issues for so long.
I am glad that your little boy turned out so well despite all your pregnancy problems. Your story illustrates just how vital it is for doctors to do a thorough batch of tests and, above all, to do the right tests!
I’m sorry to say it, but your dad should know that a disease is not necessarily adequately treated because your levels are in order. May I ask what form of medication you are on. As you probably know, many patients fare better with added T3 or on Natural Desiccated Thyroid (NDT) such as Armour. I have been through similar issues with my levels being great, but me not feeling so great, so I can very much relate to what you are talking about. Recently, at my own initiative, I switched to NDT and am hoping that this is going to give me the kick-start I so obviously need.
As you probably also know, thyroid disease can often come with related problems, which can cause similar symptoms – low immunity can cause infection with viruses such as Epstein-Barr, out of whack hormones can cause other out of whack hormones or high blood sugars. You could consider getting extra tests done (assuming these haven’t already been done) and perhaps switching to another medication. There are options, but I think a lot of it really is trial and error.
I am sorry to hear about your insensitive family. I agree that thyroid cancer is probably treated more seriously than thyroid disease as the C words generally does seem to command more respect, even if thyroid cancer is often dubbed “the good cancer”. My link to Joanna Isbill’s column at the end of this article might also be an interesting read for you.
By all means, feel free to print out this article or quote from it. Perhaps getting people to read some of the articles on DT could also help spread awareness. We have a lot of great patient perspective pieces and Dear Thyroid letters.
Wishing you wellness!
Love,
Sarah
Dearest Faith, I am glad you like my article. Thank you for commenting. Your hubby Scott really does deserve a special mention – you’re a great guy, Scott, for supporting your wife in this way. May all hubbies and partners be like that!
Sarah, you are so sweet, thank you so much for your comments and of course your support. We all need support and I do appreciate yours. Its only those of who suffer from Thyroid disease or Thyroid cancer who can relate to each other. Others might say they understand but unless they suffer themselves they cannot really truly put themselves in our shoes.
I’m sure I will eventually get the treatment I need one day, and its good to read your journey to better health. It helps us all to know that you are getting through to the doctors who are eventually helping you to get well again. The sooner you do, the better you will feel in later life.
Thank you also Dear Thyroid, your web site is so valuable to us all 🙂
Love Miriam xxx
Hey Miriam,
You are sweet too and have been a wonderful friend to me! I have two wonderful doctors who I feel have grown to respect me because they have come to realise that I do my research and understand a lot about my body. This makes me feel good and I hope that things will get better from hereon out.
Each and every one of us deserves and needs support. It allows us to be strong and keep finding. I do so hope that things improve for you. I get frustrated hearing about other people’s struggled and knowing that there is nothing I can do directly to help them. I just hope that one day somehow all this writing I and other do for this site will pay off in terms of better treatment (both medically and psychologically).
Hugs,
Sarah
Sarah,
I really enjoyed this article. I am in tears, but it’s ok. Being so new to being hyperthyroid, I am already shocked by people’s comments and reactions. Your words are always so thoughtful, thank you.
Dearest Amanda, thank you so much for your kind comments. I am so sorry that my article made you cry, but I can understand why. Such comments are at times nothing short of horrific. I am so sorry that you have been subjected to people’s thoughtless comments too. I wish it were not so. I know how daunting it can be when you are first diagnosed, but know that you are not alone and please don’t hesitate to contact either of us here at Dear Thyroid if you need resources, support or have any questions whatsoever. That’s what we are here for!
Hugs,
Sarah
Another fabulous column, Sarah!!
The statement I hate to hear more than anything is, “I’m so glad this is all behind you.” I hear this too often, and when someone says this to me what I actually hear is, “I don’t know or care enough about what you’ve been dealing with to know that it’s not behind you. The details aren’t important to me.” Just because I’ve had my thyroid removed doesn’t mean everything is behind me. That was just the beginning.
Thanks for sharing your wonderful perspective!
xoxo,
Joanna
Hey Joanna,
Thanks for commenting. I’m very glad you liked my column. Sadly, it’s not just my perspective. I know that many thyroid patients are quite familiar with almost all of these comments. I am sorry that you get ignorant comments about your thycancer. The comment reminds me of the comment in I. People just don’t get that this is something we are going to have to deal with for the rest of our lives and nobody really wants to hear polite platitudes, do they? This is why I have become quite impatient and hurt by the attitudes of a lot of our friends. They simply don’t care to find out more. I have no time for people like that anymore. They just frustrate me!
Hope you are having a wonderful Sunday!
Love,
Sarah
Beautiful. Powerful. You are never at fault for your autoimmune disorder!! I’m so glad you added this one to it!!
Thank you!
Love your list!! Brilliantly written!!
xoxo
Thank you for commenting, Melly. I often beat myself up and am ashamed about several aspects of my illness, but really that is BS and we need to realise this – so does society for that matter. Glad you liked the article. Am looking forward to your next one too!
Love,
Sarah
Wow! Wow and another Wow for added measure. You hit the nail on the head once again Sarah! Which brings me back to my same place as always, awareness. Awareness for us as a community. Awareness to others so they can take care of themselves and have a chance at not having to be part of the club but also awareness to the friends and families of those that live with this disease. I think thyroid disease can most definately strain relationships, if not ruin them entirely. I really don’t think many people understand the severity and complexity of this disease. I do see some light at the end of the tunnel but that is only because of the hard work of people like yourself and DT and others. More and more I have started to see articles in magazines or a segment on a TV show but they are never what they need to be. They reduce the severity of the disease and it makes me so angry. We need more people that are willing to stand up for themselves and be willing to go head to head with anyone who is not understanding what it is like for us. That’s my story and I’m sticking to it. And I hope that we can get others to do so as well. And even though I agree about the cancer getting more attention I can say that after that process is completed people don’t understand that a simple damn pill is not going to make me whole again, it may bring me to a better place but I have to live with the fact that that too could change because our bodies change and doses need to be adjusted, etc. I learned this the hard way. So although I am a survivor, I still have a thyroid disease to deal with for the rest of my life. The “C” word may get you more sympathy in the beginning but that goes away pretty quickly and eople expect you just to get on with it. Uugh! Thank you for the lovely article sweetie. I hope others choose to stand up for themselves and for us as a community. I am, I’m educating myself, sharing what I know with anyone willing to listen and hopeful that we can make a major impact and let the world know that we are here and we want compassion, quality care and a platform to speak out! This disease can suck the life out of you and that is just not acceptable to me, for me or for others. Your rock Sarah!
Hi Sarah –
I loved this column – The points you made are eerily true, and I found myself wishing that this wasn’t the case. And that so many thyroid patients had walked this mile.
Thank you!
Great work.
K
Sarah,
Yet another brilliant column from you.
I’ve had a few comments made from doctors and friends alike.
1.Dr Endo No.1 you are cured but still want you to see the surgeon so he can keep an eye on you.
2,Dr endo.1 I send all my thyroid patients to see the surgeon to get there throat cut hahaha I am laughing jackass.
3.Friend once you have your thyroid out you’ll be back to normal. Fuck me what is normal haven’t been that in years.
4. Had the TSH scenario so many times I know what i would like to do with that TSH..and that is rename it Totally Shit Hormone..
5. and I am so pissed off at trying to find someone who will at least acknowledge my low FT3 and do something about it. when you get endo doc#2 suits him cus he was shit, saying you don’t need to look at the FT3 the TSH is great and FT4..Now I have no endo and I couldn’t give a shit if i have another one I am looking for another Doctor who will look at the whole labs and dose accordingly.
Thanks for a great article Sarah sorry I am late took the opportunity while i am not feeling too bad to get some gardening and greenhouse potting done. And of course the weather was lovely today.
Lollyx
Love it! Im going to post this on my FB page for all those idiots out there that talk shit and dont know what the heck is going on.
Great job!
Sarah – thank you so much for writing about this. I can relate to most of them and as you know, some of them happened to me. All your articles are so important for awareness and education, and your writing really is brilliant. You are making a difference.
Sorry for chiming in so late. This has been a very difficult week and today was no different. I have been fighting for a diagnosis for someone and I feel so useless and defeated right now. It’s killing me to watch this happen to someone I care so much about. This person has now lost 30 lb in the last 2 to 3 weeks and is so sick right now, mentally and physically, but I still can’t get anyone to listen and take this serious. The medical system is so fucked up and failing patients so miserably and I know I shouldn’t, but I am feeling like such a failure right now. After all I’ve been through fighting for myself and all I’ve learned, it isn’t helping me advocate successfully. I’m so exhausted and the stress is really affecting me now. The next step is to order the tests ourselves. After that, I don’t know what we are going to do next but I do know I will continue to draw strength from this courageous and supportive thymmunity.
Love,
Lori♥
This is excellent…Though number 7 nearly brought me to tears.
I had bloodwork done 2 weeks ago, having had to postpone my appointment due to family issues…I don’t even want to see my doctor because I sense stubbornness about putting me back on NatureThroid, which I’d done well on under a DO (who sent me to an endo), despite my having very irritating skin irritations and (I believe, not having had this issue till starting this Synthroid garbage) extreme sun sensitivity to the point I can barely walk the dog even with SPF 50 on without turning pink.
Yet the doctor’s staff insist I don’t know what I’m talking about: “He went to medical school and has been doing this for 20 years, so he knows what he is doing.” What is obnoxious is I suspect if I could GET my doctor on the phone (he’s 2 hours away as it is, because there’s no one in the Ohio Valley who knows a thing about they thyroid), and we could talk about this (we both think I need T3, so why put me on T4-only when I’d been on a compound, and taken off of THAT b/c of the rash?) like adults…I think he might actually concede and put me back on NT. Yet here I sit, not even wanting to call & reschedule my appointment, wondering if they’re going to insult me again or suggest it’s all in my head. What do I do, put on black clothes & a ski mask, then knock down the Target Pharmacy to get the NatureThroid I used to be on? Beg my compound pharmacist to please sub NT for the dye-free Synthroid?
There is a great lack of information about this particular little collection of autoimmune diseases and their effects on the human body, both in the populace at large and, more lamentably, within the medical community. Where are the doctors who are truly CURIOUS about thyroid and other autoimmune diseases, who really want to know what *works*, willing to let patient A be on one treatment, C on another, and F on yet another?
It floors me that in a highly individualistic culture where “do what make you feel best” regardless of the morality of “what”, we want to treat every single individual as if their body reacts the same way to eating, exercise, the environment, and other things in our lives. We’re all DIFFERENT! What works for one person won’t work for another, *especially* when it comes to health.
Please don’t get me started on the weight thing. I’m down to 1,000 calories a day with plenty of exercise, more than a small business owner has time for, and still my clothing gets snugger. If the NP tells me one more time to exercise more I’m going to either cry or scream at her…But then, we thyroid patients are so mentally and emotionally unstable. It’s just part of the package!
/rant over
I’ll have to check everyone’s comments tomorrow at lunch (you know, half an egg, half an apple, and 2 spoonfuls of Greek yogurt… ;D). Should be interesting and maybe fire me up enough to call my doctor.
Dearest Donna,
So glad you liked my article. Awareness is so important as a preventative measure. Had I known that my grandmother had thyroid disease and that it runs in the family, I may have got myself checked earlier and could have perhaps avoided a lot of shit. Doctors need to play a part in spreading this awareness by at the very minimum informing patients that they should tell their families about their diagnosis in case they have it too.
I agree that people fail to understand the complexity and severity of this disease, which does – as you say – lead to ruined relationships. It is rather frustrating to say the least.
It is true that the media seems to be slightly increasing their coverage of thyroid disease and cancer, but we do need to make sure that they provide people with the right information, particularly with regard to not just testing the TSH, up-to-date TSH levels and, of course, the fact that Synthroid is not the be-all-and-end-all medicine some doctors claim it to be.
I am so proud of you, Donna, for all your advocacy efforts. You rock too girl! (thanks for the compliment).
Love,
Sarah
Dearest Katie,
So glad you liked this column. I’m so proud of everybody for sharing their stories so candidly and for being so brave to spread awareness because frankly you do have to be brave as you can come up against all kinds of negative and hurtful feedback. We have to keep going though as we have many goals to achieve.
I too wish that not so many people could identify with these statements. It is sad how many people are subjected to them, but again it brings us together knowing we are not alone, enabling us to cope and feel stronger.
Love,
Sarah
Dearest Lolly,
Thank you so much for commenting and for sharing more of your story. I am glad you had a productive and enjoyable day in the nice weather. Sometimes we have to make the most of it, don’t we?
Glad you liked my column. Your comments certainly bring home once again how ignorant and tactless some doctors can be. It really feels as if such doctors are failing to take their job seriously. Being a doctor takes a lot of training and is a huge responsibility, but it is not okay to rest on your laurels once you’ve reached this position.
Love,
Sarah
Dearest Cynthia,
Glad you liked the column. Feel free to use it any time you need to to educate those who don’t understand. I am sad that you are faced with so many ignorant reactions with respect to your illness, but I also know that you do have some good friends out there and am very glad for that!
Feel better soon and, moreover, I hope you get to see a decent doctor soon!
Love,
Sarah
Dearest Lori,
I am glad you liked my article, but sorry that some of them did happen to you (thanks for your contribution btw). Thank you for your kind comments. I sure hope that I am making a difference. I think it is always easiest to write about stuff that is close to your heart and that you have experienced personally.
I am so sad to hear about your loved one’s suffering and your fight to get them diagnosed. It shouldn’t have to be this way! There is no way that you are a failure, Lori. In fact, I have always found you VERY inspiring. You are such an advocate, you are so aware, so determined and have never given up despite all the stones and suffering that have been placed in your path. Please let me know if there is anything I can do for you at all. If anyone’s a failure, it is the medical professionals who have failed us by failing to diagnose thousands and thousands of people who are sick and suffering.
Love you, Lori, my friend! Please don’t beat yourself up and don’t hesitate to contact me if you need me. You have my number.
Hugs,
Sarah
Hi sarah thank u for sharing:)I really could identify with everything u wrote, esp “people” need to blame the disease!!not us!!thanks also for a great laugh(no harm intended)”potential shag”(hookup)love it!I’m from the us n its great 2 b connected w other people around the world:)n esp a. Part of this wonderful community:)Its only been a few weeks(hypo) n I have to tell u how fortunate I feel to have wonderful people here for support:)thanks I always enjoy what u write n find it comforting n helpful in many ways:)debb
Dearest Jen,
Thank you very much for commenting. Much of what other thyroid patients share with me brings me to tears. They are so candid and so brave to share their stories to help others and increase awareness.
Doctors assistants/receptionists can be wankers to put it bluntly. We mustn’t forget that they are not qualified to comment on our health or on our treatment. The doctor is the guy/gal who makes the decision and it sounds like your doctor would be prepared to put you back on Naturethroid and frankly he bloody should, seeing as you felt better on it! I understand not wanting to see a doctor because his staff are a bunch of tossers because I feel that way with my gyno and one of his receptionists. She is a ignorant bitch who also has thyroid disease, but apparently knows shit about it. In fact, I honoured her in my writing in Number VIII!
This is excellent…Though number 7 nearly brought me to tears.
Did you have to switch to Synthroid because there was a shortage with Naturethroid? It sucks that NDT can be so hard to get hold of at times. I am sorry that you have to travel two hours to see a decent doctor. My brother- and sister-in-law did the same when they lived in Mississippi, but sadly the doctor (who was on Mary Shomon’s list) was not all she was cut out to be. Even Mary’s list is no hard and fast guarantee unfortunately.
Your description of you dressed us a robber totally cracked me up, but desperate times call for desperate measures, eh?;-) I certainly hope your doctor is clever enough to prescribe you some Naturethroid soon so that you don’t have to spend years in prison.
There are doctors out there who are curious about thyroid/autoimmune diseases. Luckily, I have one – the waiting times can be horrendous, but he does lots of tests to get to the bottom of our issues and he was also prepared to prescribe NDT despite the fact that it’s not widedly available/approved here (luckily, I found a source).
I am wondering whether you are considering changing doctors or whether you would like us to try and find some recommendations for you. If so, let us know where you live and we will see what we can do. Of course, you are so right when you say every patient needs individualised treatment. It should be a given really, but sadly it’s not.
I am sorry about your struggle to lose weight. I know how frustrating that can be and I also know how tough it can be to struggle with thyroid disease whilst continuing to run your business. Did you find you were more successful with weight loss when you were on the NDT? Have you considered buying Mary Shomon’s Thyroid Diet. I hear it is very good and have a copy myself, but haven’t tried it.
We’re all rooting for you here at DT. If you think your doc would prescribe NDT, then I think it’s definitely worth scheduling an appointment even though I understand why you are hesitating to call. I have to see my gyno for the 55th millionth time this week and I really can’t be arsed (excuse the pun)!
Love,
Sarah
Hey Debbie,
Thanks so much for your comments. I’m glad you enjoy this column and find it comforting and helpful – that means a lot to me and that is of course my aim.
I’m glad I made you giggle. Number X was amusing, wasn’t it? Because I grew up in England, I use a lot of British slang and sometime feel the need to explain in brackets because I know a lot of my readers aren’t as familiar with it as I am.
I am sorry to hear about your recent diagnosis, Deb, but know that we are there for you and that we will help you in any way possible. Just say the word!
Love,
Sarah
Why, thank you, Sarah…
If my doc doesn’t work with me the next time I see him—it’s supposed to be an NP appointment and a thyroid ultrasound, but I really want to speak to my endo—then I’m going to find another doctor (again). This one is on Mary’s list too.
He took me off the NT because of the disparity in my T3/T4 levels, and he initially put me on compound T3/T4. It was working well until the rashes began, so he put me on dye-free Synthroid despite several phone calls and one email begging him not to do so. I’m willing to see him one more time, but…I’m in WV, near Pittsburgh (where NONE of the doctors know ANYTHING about thyroid; there’s Dr. Goldstein, but he’s rather pricey). Obviously I’m willing to drive quite far to find a doctor…good thing I like road trips! 😉
Hey Jen,
Sorry to hear about all the rigmarole you have had to go through with this doc. I’ll post on the DT boards to see whether anyone can recommend a doc near Pittsburg, WV. We also have a doctor list, but so far there aren’t shitloads of listings.
I’m glad you are so aware and determined. In my opinion, that will get you far in your fight to getting well!
Love,
Sarah
Good news thyrellas and thyfellas! This very article made it into Google News, hopefully raising awareness even more: http://news.google.com/news/search?aq=f&pz=1&cf=all&ned=us&hl=en&q=thyroid
Love,
Sarah
Sarah – AWESOME! I just saw it. I wonder how something makes it get on Google News?
Thanks, Lori. I asked Katie the same question (she brought it to my attention), but she didn’t know the answer either. We are hoping to get more DT articles on Google news to widen our reach beyond the site itself.
Jen – assuming this is your problem with NDT, the disparity in FT3/4 is not uncommon because NDT has more T3 than our (human) thyroid normally does. This is remedied by adding a small amount of T4 to the NDT to balance the FT3 and FT4. It’s likely you had a problem with the compounded NDT because of a filler that did not agree with you. The compounding pharmacist should be able to easily change that. Maybe you could try discussing these possibilities with you endo, if you think they are relevant to your situation.
Good Luck, I hope you can get this resolved soon.
Sarah – I asked my son and he said he knows Google indexes news sites such as CNN, etc., but does that mean Dear Thyroid is now a “news site” in Google’s eyes? Interesting. I hope they all end up there now. Can’t wait to see.
Hey Lori,
Thanks as ever for your support and wise words to Jen.
I don’t think it’s DT that’s the news sites. A few other sites are also publishing (syndicating) our columns. In this case it was a site called Opposing Views.
Love,
Sarah
Sarah that is fantabulous news that you got on Google News. Could be also down too the amount of interest and hits it has generated but either way it can’t be bad.
Next thing you’ll be on the Oprah Winfrey show giving her good advise. 🙂
Some Drs can be so tactless and downright rude trouble is they don’t teach them bedside manners just how to practise medicine some are good at it and others just wing it either way it makes you wonder why they went into medicine in the first place. I have met some lovely Drs who take the time to explain things to you,and are willing wot work with you and listen too you, pity there arn’t more of them about.
Lollyx
Good job Sarah. Very well said!
Hi Lolly,
I’m very happy that Google news was interested in featuring a thyroid piece from the patient’s perspective! You comment about Oprah Winfrey cracked me up! LOL! I hear Mary Shomon even wrote to her, but sadly that doesn’t seem to have helped all that much.
It is indeed a pity that there aren’t more of those good docs around, but knowing that they do exist is what makes my flame of hope continue to burn!
Love,
Sarah
Thank you for commenting Fernand. I am glad you liked the article. Thanks for taking the time to read it!
Love,
Sarah
I want to give you a good long hug for writing this article. I don’t have thyroid disease, but I do have another autoimmune disease (Celiac) and hypoglycemia to go along with it. So I *sort of* understand the thyroid issues, but *totally* understand people’s uneducated and downright mean and ignorant comments. My own MOTHER once told me at a restaurant, “Don’t make such a big deal about it [celiac disease]. You’re embarrassing me.” Right. Anyways, rock on chica.
Thank you very much Jenny! I’m sending you hugs back! In fact, there is a close connection between celiac disease and thyroid disease, so many of our readers are very familiar with what you are going through. Personally, I have witnessed how tough it can be to have to deal with celiac disease as my sister-in-law has it and has to be EXTREMELY careful when eating out because on occasion they have fucked up and she has had an allergic reaction despite the fact that she ordered off the gluten-free menu. For some people, celiac can be so serious that you can end up in hospital. I am very sorry that your mother is so insensitive. Sadly, it seems a common thing for members of our family to fail to get it and to make insensitive comments of this nature. Have you tried talking to her more about it and explaining the impact of the disease on you? I’m not sure, but I wouldn’t be surprised if we have some pieces on celiac disease on DT that she might be interested in reading. You might want to type “celiac” in the search box and see what it comes up with. It is your mother who needs to get a reality check not you and she needs to become more supportive of her daughter, but to do that she probably needs more knowledge and understanding of celiac, which also seems to be a little understood disease. Once I was diagnosed and explained what thyroid disease means to my parents, they got off my case about my weight gain and now my dad is an avid research in his efforts to help my mother (who also has Hashimoto’s) get better treatment. I’m very proud of him and this makes me want to forgive him his nasty comments about my weight, which he made in previous years. He is obviously prepared to listen and to learn and maybe your mother would be too.
Hey Jen,
Do you think you could send me an email at sarah@dearthyroid.org? I have some information about a good thyroid doctor in Pittsburg WV that I would like to share with you.
Love,
Sarah
Dear Sarah,
Thanks for responding! It’s such a coincidence that your sis-in-law has Celiac Disease and you have Hashimoto’s, and I didn’t know they were so similar. My mom makes careless comments, but if you want to hear downright rude, meet my mother-in-law. For Thanksgiving dinner, she made extra-special sure that EVERY dish had at least some gluten in it. When I found something to eat, a bowl of un-tainted strawberries, my grandma-in-law made fun of me in front of my husband’s whole family and said I thought I was too good to eat her casserole. I didn’t say anything, because I was still trying to be polite to my husband’s family back in the day, but now I’d tell her, “Yes, I am too good to eat your casserole. I’d like to stay alive today, thankyouverymuch.” LOL. I have never ended up in the hospital from accidental gluten intake, but I have been so affected that I couldn’t walk for two days. Ah, people and their ignorance. I wouldn’t wish this disease on anybody, but my in-laws come really close. lol.
Hey Jenny,
I believe that celiac disease is more common than many people think, but – like thyroid disease – not enough people know about it. My sister-in-law does her best to make people more aware of this.
Your mother-in-law reminds me of my ex mother-in-law. The first Thanksgiving I spent with her I was told she was going to cook prime rib. I had never had this before (I’m not American and I don’t think it’s all that common in the UK), so didn’t really know what to expect, but politely said I would try it, whilst also mentioning to my fiancé that I can’t stand fatty meat. Of course, he told me that it wouldn’t be fatty, but it really was, so I didn’t eat much of it, but didn’t say a word because my good upbringing told me that you don’t dictate what your hostess cooks when you are a guest in her house. Of course, she made a huge song and dance about it and meanly compared me to my fiancé’s ex-wife because she was vegetarian! She also made jibes about my sister-in-law’s celiac disease.
I think our generation are more used to being able to eat what we like and it wasn’t quite like that for older generations, particularly not in the UK during the war years.
The US really does cater for all kinds of food allergies and intolerances, but it’s still not like that everywhere in Europe and it’s certainly not like that in Germany, so I do believe that it is related to different views, experiences and lack of understanding.
I am glad you haven’t had to be hospitalised, but am sorry you weren’t able to walk for two days – is that because you were in a “celiac coma” in bed? I know how that rolls from the tales of my sister-in-law. You know, if you would like to raise awareness of celiac disease, what sufferers go through everyday and the ignorance with which they are faced, you are more than welcome to write a guest post on your experiences (we call these patient perspective pieces). I am sure that loads of people would be able to relate. Let me know what you think. I’ve thought of writing something on celiac myself, but it is much easier and more convincing when it comes from someone who actually has to live it.
Love,
Sarah
Dear Sarah,
Your ex Mother-in-law sounds as horrible as my current one! I was raised to be polite and eat whatever was put in front of me, too, but as you mentioned, in our generation we are more careful about what we eat. And I believe that I have the right to refuse food that will make me physically ill – just as if it were rotten or diseased. “Celiac coma” is a term I’ve never heard before, but I definitely think it applies. What happens to me is that I have so much pain I can’t stand or sit, and I have to lay down. I drink as much water as possible, to attempt to flush out the offending food, and fall asleep. I wake up 2 days later feeling weak but better, and my husband tells me that I am fully capable of walking to and from the bathroom many times without waking up at all, lol. Sometimes he says he has conversations with me and I respond, but I have no recollection of them when I awaken.
I would love to guest blog for you! That would be a treat. Just tell me when and were. I have a blog, too, and I plan on adding a page about Celiac disease when I have more time.
Jenny
Hi Jenny,
“Celiac coma” is a term I just came up with. I figured it would apply. Feel free to use it in future (I’m not copyrighting it;-)) You description of what you go through when you have a “celiac attack” is interesting and enlightening, but I’m sorry that you have to go through this sometimes.
As for guest blogging, it is great that you’d like to do this. I was actually talking about you guest blogging on Dear Thyroid. I think it would be great to have an article on celiac disease from the perspective of a celiac sufferer. As I said before, I know many people could relate and so I’m sure you’d get lots of feedback. I actually did a search on DT for celiac, but as far as I can tell nothing like this has been done before, but even if it had, in my opinion you can never have too many patient perspective pieces.
What is this disease? What do you go through/How do you feel when you have a celiac attack? How does celiac change your lifestyle/limit you? How do you deal with it? What are people’s attitudes towards celiac disease? Is the public aware of it? Have their attitudes changed at all during the past couple of years? Those are just a few suggestions of what you might like to include. We have nutritional bloggers, but from what I’ve seen they tend to write about stuff from a more factual perspective, so this could be something that is written from a more personal perspective. If you want to talk about this more with me, feel free to email me on sarah@dearthyroid.org
Love,
Sarah
Love it! So amazing and perfect!
Thank you, cancergirl730. So glad you like the article!
Love,
Sarah