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Flying With Broken Wings Meet Sarah Downing And Her Thyroid

Post Published: 27 February 2010
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Category: Column, Flying With Broken Wings, Health Research and Awareness
This post currently has 39 responses. Leave a comment

When my doctor diagnosed me with Hashimoto’s (an underactive thyroid caused by an autoimmune disease), I felt both relieved and sad – relieved because I finally had an answer to why the weight was gradually piling on, why I had to spend most of my days in bed and why I suffered from skin irritations and bloating; sad because I wished I had known earlier. What makes it worse is that my mother and grandmother had had the disease for years, but only shortly before my diagnosis was my mother told that it can be genetic.

This truly brought it home to me how unaware we are of this disease, particularly when I recently read on one of patient advocate Mary Shomon’s websites that as many as 59 million Americans have thyroid problems, yet the majority remain undiagnosed. Why on earth is this and what can we do to change it?

The more I read and the more I talk to others, the more I realize how much this disease is trivialized and mocked. One friend’s reaction to my diagnosis was “I didn’t think it was that serious”. Well, mate, a disease that will chronically affect your whole body for the rest of your life in ways you can’t even and sometimes don’t even want to imagine is anything but trivial. Incidentally, said friend’s mother suffers from thyroid disease. Another friend was of the opinion that downing a Red Bull energy drink would help me feel less tired – well, I wish it were that simple! Another friend remarked that society deems the stereotypical thyroid patient to be a fat, depressed woman. Sure, we get fat. Sure, we get depressed, but this disease is about so much more. Symptoms range from hair loss to skin issues to tiredness to obesity to blood pressure issues to infertility to dry mucus membranes (including your lady bits!) This is not a pretty disease and not one some people like talking or hearing about, but it’s certainly one that the general public needs to know more about when you consider how very prevalent yet undiagnosed it is.

Moreover, there are still way too many people out there who are suffering despite being on medication. Members of the medical community think that one little pill is a panacea and time and again I talk to patients who were repeatedly misdiagnosed with other illnesses, very often depression, before being given the correct diagnosis. To make matters worse, many doctors rely much too heavily on blood work and less so on how the patient actually feels. It also seems to be a frequent occurrence that thyroid patients who continue to complain of weight gain get sent home and told to “lay off the beer” or “stop using your thyroid disease as an excuse”. When your hormones are out of whack, you can literally lead as healthy a lifestyle as you like, but you may still suffer from weight gain and problems losing weight. That is why we have to be our own advocates – a good doctor can help us get well, but they can’t do it for us.

Explaining thyroid disease (or any disease for that matter) to your friends and family is no mean feat and I’d like to share my experiences with you in the hope that you will feel able to share yours with me. Since my diagnosis, I have done copious amounts of research which I am always happy to share with many family members as links to articles or in my own words (particularly as thyroid disease runs in the family), most of whom are diagnosed, but with unsatisfactory treatment; a few of whom are undiagnosed, but based on their symptoms we suspect that they may suffer from it and I am eager to help them get diagnosed. I try to gauge each person’s interest and receptiveness to the information I am providing them with. After all, I don’t want to shove it down their throats, but I figure if I make it available to them, then it is their decision whether they read it or not. Much to their credit, most members of my family are very happy to discuss the disease with me and listen to what I have researched, realizing that it may benefit them in the long run. It is also important to note that there are tactful ways of suggesting to your family that they get tested without getting too personal about certain symptoms such as weight gain, but who am I telling? Most of us know exactly how it is to be on the receiving end of tactless comments about our weight.

I find it much more of a challenge to explain to friends what is going on with me – why I haven’t been my usual sociable self for months and why I have to concentrate on what is best for me right now and whatever helps me to get well. I hate seeming selfish, but this is the way it is when you are recovering from a chronic illness. Perhaps recovery is the wrong word. It won’t ever go away as it’s chronic, but I am determined to get it under control. I have decided to be very honest about my disease, which does take guts because you have to be prepared for a whole myriad of reactions …

A few people have been very supportive and understanding, offering their help and comfort. Those who have been the most supportive tend to be those who are familiar with medicine or illness because they are the ones who have often experienced it first-hand and know where I am coming from. I have realized over the past few years that not everybody is capable of empathy and I can’t expect everybody to empathize with me or I’ll just end up disappointed. I tend to find it less stressful to spend the majority of my time with those who understand and care about what I am going through. With chronic illness, it’s vital to avoid stressful situations and if I feel that certain friends are more stressful than supportive, I will consider seeing less of them for my own good.

Other people are what one might dub life’s ostriches. They prefer to stick their heads in the sand and have reacted negatively to my involvement and research in this disease. One friend warned me not to become too involved as the “disease would then become my life” and she even referred to campaigners who talk about nothing but what they are campaigning for. But I see it differently. I refuse to be ashamed of my disease. This is part of who I am and if I can raise awareness and learn more about it, this will help me and others to control it and stop it from consuming us. I am trying to turn something negative into something positive. And positive really is the magic word here. I think we have to make a concerted effort to be positive when talking to others about our disease if we want to get our message across. Of course, we can bitch to those we truly feel comfortable with, but when talking to friends they will often be more receptive if our message is perceived as informative rather than whiny.

On the other hand, there are those who would prefer to rather not know and I know that we have to respect this. As I said above, you can’t force-feed anyone information. Some people view Internet research with skepticism. It scares the shit out of them. Others have a disease and would rather not dwell on the symptoms for fear that focusing on them will make them become real. Others still have a fear of doctors and others have referred to my research as a “dangerous half-knowledge” (a translation from the German). The question I pose to you all in parting is this: is it more dangerous to know something or to know nothing at all?

If you want to do your bit to raise awareness for thyroid disease, you might consider wearing your disease on your sleeve with Dear Thyroid™’s range of outerwear.

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39 Responses to “Flying With Broken Wings Meet Sarah Downing And Her Thyroid

  1. ana says:

    I feel so tired and especially hate it when I have to explain to people why I am the way I am and half of them won’t listen, won’t even try to understand. Makes me sad. Thank you so much for sharing this!

  2. Lori says:

    Job well done Sarah, great first article! I am very excited you are writing for Dear Thyroid. Congratulations!

    (quote) “The question I pose to you all in parting is this: is it more dangerous to know something or to know nothing at all?”

    Absolutely knowing nothing at all is more dangerous and a setup to be very disappointed in the course of a persons illness. How can someone help themselves and recover if they have no knowledge or understanding about their illness. As you said, a “good” doctor is half the equation in our journey to recovery. My new doctor gave me all the tools I need to recover. It is now up to me to carry out her recommendations and use the tools I have been given, which I have total faith will get me to where I want to be. I now have a real partner in my recovery who is going to follow along closely every step of the way.

    “Knowledge IS Power” I absolutely disagree with whoever said research is a “dangerous half-knowledge” A good doctor appreciates a patient doing research. It actually makes their job easier (I have been told by my doctor). I am extremely thankful to now have two doctors who appreciate that. My primary care and now my new thyroid doctor. They help me sort out the information I think is important and have questions about, and explain what I don’t understand and what is important or relevant to my situation, and then add to that. I find we can cover more ground in the limited appointment time. I did not start out this way. After several visits and feeling frustrated I did not get enough help or explanation, I realized I needed to be more prepared, which means more knowledge, and it has made a world of difference. Of course, brain fog, etc. does not always allow us to be so on top of things but that is always the goal.

    In my opinion, I think the word “recovery” is a very appropriate word. To me, recovery does not mean cure or complete resolution. Recovery is a journey to living the best you can with whatever illness you have been dealt. I have come to learn this through many years of helping people in my family through chronic illnesses and it has now been reinforced through my own journey to “recovery”.

    XOX
    Lori

  3. Lori says:

    Oops. I need to correct the sentence above (last paragraph) It should say: To me, recovery does not *always* mean cure or complete resolution.

  4. Cynthia says:

    Great Job Sarah! Loved it! Very well said. Having friends that dont understand is hard. Ive had to end some friendships because they were just making me feel worse about myself. They would call me bipolar and tell me just to go to the gym. Dont need that added stress. I have enough of my own to deal with!

  5. Lolly says:

    I agree fully job well done and well written. I so relate to friends not understanding and then there are those who don’t understand but want to help in many ways and others who don’t fully understand the implications of this disease and only see what they want to see and that is you don’t look too bad, maybe you should get the fucker out and be done with it.

    It would be even better if the bloody doctors and endos’ I have seen over the years understood it but just like you and Lori say you have to work with them sometimes making them think it is there Idea when you propose an idea or a request. Not all Doctors or Endo’s like knowledgeable people and think the Internet is full of bad information and don’t believe everything you read my sacked endo’s words.

    Well all I can say repeating Lori’s sentiments “Knowledge Is power” and power to us thyrellas and thyfella because without it your on your own struggling.

  6. Ana;

    Very proud of you for sharing what you did; I think part of the exhaustion comes in by trying to explain what’s going on. Our frustrations are so great. Wrapping that into a bow and serving it to a friend or family seems difficult.

    One of the things that Sarah’s column will aim to do is help us as patients find ways to communicate with our families and friends to help them understand what’s going on with us.

    Let me ask you, Ana, what kinds of columns would you like to see; what would you find useful to you?

    Thanks for commenting.

    xo

  7. Lori;

    I loved everything you wrote, but this resonated really hard for me:

    “I think the word “recovery” is a very appropriate word. To me, recovery does not mean cure or complete resolution. Recovery is a journey to living the best you can with whatever illness you have been dealt.”

    I was thrilled that Sarah wrote about that and appreciated how you extrapolated on that point. Knowledge is empowering. Having great doctors is only half the battle, the other half is the tools to ask the right questions and to provide doctors with an accurate picture.

    As for me, I write lists before each appointment. When there is something I want to try, I bring the research with me and highlight the points that are of interest to me and explain why I think I will benefit from this.

    I digress…

    Lori — Beautiful point. I agree with you 100%.

    Love,
    Me

  8. Cynthia;

    I’m over the moon that you mentioned the loss of friendships. So many of us have lost friends during the many phases and incantations of our respective diseases. Having to fight a disease is exhaustive enough; add to that friends who don’t get it?! Well it’s enough to make you want to do the drama diva swan dive off the Golden Gate Bridge (metaphorically speaking).

    When you lost those friends, how did you feel? Were they friends you’ve had forever? How did they convey their lack of understanding when you tried to educate them about how you were feeling?

    Would love to know more.

    Thanks for sharing and speaking up.

    xo

  9. Loved your comment, Lolly.

    You are right– so many doctors don’t give a shit about what we have to say. They think that our input means nothing, which is a shame and to their determent. Essentially, they lose patients, which equals money.

    This quote was awesome! I agree fully job well done and well written. I so relate to friends not understanding and then there are those who don’t understand but want to help in many ways and others who don’t fully understand the implications of this disease and only see what they want to see and that is you don’t look too bad, maybe you should get the fucker out and be done with it.

    In your opinion, when friends don’t relate, what do you do? What things have you done to help educate them? Or, do you just let them go and be done with it?

    I think you’re right re: most friends/family try and do the best they can. We appreciate them, don’t we? Trying makes a world of difference, IMO.

    xo

  10. Social comments and analytics for this post…

    This post was mentioned on Twitter by katieschwartz: Check out Dear Thyroid’s new Editor, Health and Awareness, Sarah Downing “Flying with Broken Wings” http://bit.ly/cjmh38 give it a read, luv…

  11. Hypogirl says:

    Sarah,
    Thanks so much for sharing your story!!! I need to re-read it because it is filled with so many good thoughts. I get frustrated too when people don’t understand or care to even think how my disease affects my everyday life. It affects it in many many ways. But you all know that. 😉

    Lolly, You have such great words as well!

    I wish I could type so eloquently as you all! I speak much better than I write!

  12. Ana Lydia says:

    Thank you for sharing such a personal journey! I can relate with your experience dealing with friends that simplify our disease to *weight gain*; or attribute *their* weight gain to their (non-existant) thyroid-prob. Instead of a constant attempt to shed light on their ignorant viewpoints of what living with Hypothyroidism / Hashimoto’s *feels* like. I have since chosen to remove myself from those situations and people. It has been one of the best decisions I have made.

  13. Lolly says:

    Katie,

    In answer to your questions.

    “When you lost those friends, how did you feel? Were they friends you’ve had forever? How did they convey their lack of understanding when you tried to educate them about how you were feeling?”

    I felt a great sense of relief because who needs friends like that, a friend to me isn’t one that has to understand what you are going through, but maybe give some support and little understanding of how it effects you on a daily basis.

    My eyes were more of a focal point but it wasn’t just about them, that is something that was visible.. the things we don’t see are the aching joints the fatigue and lethargy, couldn’t hide the sweating dry skin, hair loss weight loss/weight-gain.

    How would they know what it was like not to sleep or having beatboxing palpitations, sudden rages uncontrollable at times. A friend to me is one who knows me well and knows that is not me, for those that don’t don’t bother asking me how I am when you don’t really give a shite all they want to do is talk about themselves. I don’t need negative people in my life so I would rather they stay away it is no loss whatsoever they are what I would call fare weather friends or acquaintances a true friend knew me before and after this disease.

    A couple of friends I had known for many years I hardly see them anymore and when I do it’s just a flying visit I don’t do anything to make them feel welcome anymore and I think they get the picture. Did I feel hurt maybe a little at first but then comes the realisation that they weren’t really your friend in the first place and it really isn’t a loss.

    I just have to add this and I mean every word of it, the best friends I have made have been online friends ones who know what it is like to go through this awful disease, sometimes you don’t even have to speak of it it’s like a telepathic communication maybe I should call it thysick (Psychic)because we understand each other without uttering a word. I cherish my online friends and they have been more than a help to me through this journey then any family member or friend.

    And that includes DT too.

  14. Lolly says:

    Hypogirl,

    Eloquent I have been called somethings in my time and that isn’t one of them, You too nice but Hey I write as I speak sometimes good sometimes bad and indifferent but just like you it comes from deep within. I love reading what you have to say no matter how little or how long.

    I can’t find the link to your new podcast could you tweet it me please. I love how you talk as well.

  15. Robyn says:

    Welcome aboard, Sarah!

  16. annacai says:

    Thank you,
    I have a few people in my life, I no longer call them friends, who like to play “my disease is more devastating than yours.” They don’t have a clue about how to be supportive. They compete in every avenue of life, except actually acquring knowledge about health. They seem to believe that everyone who went to medical school learned everything about every condition and that we must believe everything that the physician says and ignore anything the physician ignores. I don’t have the energy to argue with them. But I will wear my disease(s) on my sleeve and continue to learn everything that I can. Hashimoto’s also “runs in my family.” And I have grandkids who will benefit from what their granny knows. Keep Learning. Keep Writing. I’ll Keep Reading.

  17. Lori says:

    Reading everyone’s brave words about family/friends disappearing or trying to help are bouncing around in my head. That is because I skipped over that whole issue and it’s been in my thoughts all day, so I am back now to put it on paper and leave it behind.

    I thought I had a few good friends and support would be returned from family if ever needed. I was dealing with chronic illnesses years before I knew they were caused and/or related to thyroid disease. During those years before finally being diagnosed, everyone disappeared. Friends, family, everyone. The only people who showed true concern were my parents. And like Katie said “Trying makes a world of difference, IMO”. This is so true, it means everything. They don’t have to do anything but try and show true concern. A few people have said what seemed to be the right words but they were not sincere. That hurts and cuts deep more than not saying anything. I don’t have time for these people in my life. Life is about give and take. Unfortunately, I had too many takers in my life.

    Lolly, you said so many things about this that resonated with me, especially like the ones that all they want to do is talk about themselves.

    If you don’t mind Lolly, I am going to quote every word you wrote below because you took the words out of my mouth and my heart. Never in my wildest dreams could I have imagined the friendships I would make online, especially the way we are able to communicate without spoken words!

    “I just have to add this and I mean every word of it, the best friends I have made have been online friends ones who know what it is like to go through this awful disease, sometimes you don’t even have to speak of it it’s like a telepathic communication maybe I should call it thysick (Psychic)because we understand each other without uttering a word. I cherish my online friends and they have been more than a help to me through this journey then any family member or friend.
    And that includes DT too.”

    Soooo beautifully said, Lolly!

  18. Ciara Maher says:

    I could really relate to what (and how) you wrote Sarah and am looking forward to the next installments. One interesting symptom I was surprised to learn about recently was floaters (in the eye). Around the time I was diagnosed with hashi’s I had a floater or maybe 2 in my right eye – went to a specialist who couldn’t “find it” but at least acknowledged that did not mean it didn’t exist. It went away but recently over the past year as I beleive I have become a classic case of rT3 doing it’s thing and my hpo sypmtoms have been increasing now my little floater friend is back! I read (I think on Mary’s website) that this can be a symptom and suddenly it made sense! Like I said…. can’t wait for part 2!

  19. Hey all, sorry for the delayed response – it’s due to the nine-hour time difference (I am currently living in Germany). Thanks so much for taking the time to comment and share your experiences. This is exactly what we are looking for!

    Ana:
    I am happy to share my experiences if this helps others to identify and know that they’re not alone. I am so sorry that you have to go through the frustrating experience of friends just not getting it or not caring. I think we need to focus on the friends we do have who get it. Some people are so caring it moves me to tears. I think even when we are in good health, it is a good exercise to realise for ourselves who are our true friends and who we can’t rely on – in my life, there have been plenty of the latter. That way we won’t be so disappointed when they don’t deliver. I have often gone through life trying to see the good in people and expecting them to care as much about me as I do about them, but you end up feeling cheated when they don’t, so maybe it really is for the best to distance yourself from such friends.

  20. Lori:
    Thank you very much for your words of encouragement. I’m glad you liked it! I’m so glad you have finally found a good medical partner to hopefully get you the treatment you need. I love the way my own doctor listens to my suggestions, particularly as I believe that we tend to have a sixth sense about what is going on in our own bodies. I went in yesterday, worried I had developed candida after taking antibiotics – a week and a half before that I had had a gynaecological operation, so it was important to stay on top of it to ensure everything heals okay. My symptoms were so subtle (perhaps because my immune system is unable to fight it off properly) that I thought maybe I was imagining it and was worried the doctor would tell me so, but I’m so glad I followed my instincts because they turned out to be right and now I’m on the treatment I need (including the antifungal pills to flush out systemic fungus). That just shows that we should listen to our bodies and not be afraid to suggest any treatments or tests we feel would be beneficial. After all, the doctors may be the medical experts, but we’re the ones who’ve lived in our bodies with our diseases. For me lists of symptoms/tests/medical history and research have been invaluable. Too many doctors feel threatened about Internet research or don’t trust us to sort the wheat from the chaff – well, I find this incredibly insulting. As a researcher in my job, I know how important it is to read several sources before picking out what I consider to be relevant and important and some sources you come to trust and come back to time and again. What you mention about recovery is interesting (“living the best you can with whatever illness you have been dealt with”) – that’s similar to the topic I have planned for my third column – living life to the fullest.

  21. Cynthia:
    It’s sad that friends should make us feel this way. I’ve had lots of “friends” and even family who made me feel shitty about myself or even my weight and I tend to distance myself from them. It feels like an abuse of trust and some people are just incapable of empathy or only want to deal with the good stuff. Just like a marriage is (or should be) “for better or for worse”, so too should a true friendship be, but how many people do we really have who we could consider true friends? I’d say I have a fair few, but I also have a fair few that I don’t expect anything of anymore. I feel like I used to give and give without getting back – it’s so natural to me in a friendship and in my role as a friend – but I’ve stopped doing that now. Why should I drain my resources and waste my time with selfish people when I could spend more valuable time cherishing those who really are good friends?

  22. Lolly:
    Thank you. I’m glad you liked this week’s column:-) Good point about people having trouble believing we are ill unless we look it. Chronic fatigue is an invisible illness and when it comes to weight fluctuations, many people are so ignorant about the role hormones et al play in our weight that they often refuse to believe us when we do try to explain that we have metabolic issues. Those people can fuck off as far as I’m concerned. Furthermore, your comment “there are those who don’t understand but want to help in many ways” brings to mind that what really counts is people’s good intentions. My gynaecologist, for instance, can be a tactless twat about my weight (I am slightly overweight – thanks thyroid, thanks PCOS! – but not excessively so), but I have come to realise that despite his occasionally upsetting remarks, he can also be incredibly kind and really does truly care about my health. Since we had our last altercation anyway, he’s been a lot better and we haven’t argued since. If people care but lack knowledge, maybe they are open to us teaching them more.

  23. Hypogirl:
    Frustration is a very normal emotion when you consider what we are going through. Getting well or trying to reach the point where we can enjoy life again takes time and patience. I wish we could expect understanding from everyone while doing so. Sometimes, I find myself forcing myself to be more realistic — I’d like to believe that everybody cares, but the harsh reality is that they don’t. So instead of getting frustrated I try to focus on those who do and those I enjoy spending time with (I still do get frustrated, but it has helped me to be more realistic about my expectations).

  24. Ana Lydia:
    Happy to share my story and glad you could relate. If people don’t care what is going on in our lives and supposed to be our friends, it is indeed best to distance ourselves — maintaining friendships takes a lot of effort. I pride myself in investing a lot in my good friendships, but I refuse to any longer invest time and emotions in friendships that aren’t going anywhere. It is, after all, a two-way street.

  25. Robyn:
    Thank you very much! I’m happy to be hereïÅ .

  26. Annacai:
    It’s awesome that you are so into spreading awareness and learning more. “My disease is more devastating than yours” is a stupid and pointless game, isn’t it? How can anyone possibly know how another person is feeling unless they are in their body? It shouldn’t be a competition, but about offering mutual support. I would like to think that all sick people are more empathic of others’ ailments, but it also depends on your character and personality, so I know this isn’t necessarily the general rule. It’s important to do your own research on top of what the doctor does, because each doctor only has a limited amount of time with you and you know more about your own individual illness than he does as you are the one who has to live with it.

  27. Ciara Maher:
    Very happy you liked my column and could relate. It’s interesting what you said about floaters because I have another Dear Thyroid friend who suffers from these. Perhaps I can put you two in touch? Let me know what you think. She’s currently in the process of having them checked out.

  28. Lori says:

    There’s another symptom I never knew was related to thyroid…floaters. I had them a lot (very distracting) when I was first being treated. I have terrible dry eyes and use prescription and over the counter drops daily. I am very sensitive to light also. Not sure if these have anything to do with the floaters but these are all the eye symptoms I’ve had.

    The floaters finally went away after about a year, then came back intermittently for a short time and now seem to be gone for good. At the time, the eye doctor said I had too many issues going and he could not say what was related to my Hashimoto’s for sure. I’m glad the floaters are gone though because they really were a nuisance. I kept thinking there was a bug flying around the periphery of my sight.

  29. Lolly says:

    Sarah,

    Well said on this bit couldn’t have done it better myself.

    Chronic fatigue is an invisible illness and when it comes to weight fluctuations, many people are so ignorant about the role hormones et al play in our weight that they often refuse to believe us when we do try to explain that we have metabolic issues. Those people can fuck off as far as I’m concerned.

    I had to laugh at something someone sent me today first thing I thought of was this post. Hope you don;t mind me sharing well you got no choice cus I’m gonna anyways.

    Women are angels.
    And when someone breaks our wings,
    we simply continue to fly…on a broomstick.

    We are flexible.

  30. Lolly says:

    Lori,

    I’m pleased to hear we think alike I think many of us feel the same way about friends relatives etc.. I meant every word of the last bit about online friends I have learned so much over the years passing on there wisdom and knowledge helping me when I needed it, now it is my turn to help others and pass on what I know.

    You got friends just look around you feel the Love.

    Lolly

  31. Rissa says:

    Hello,

    Let me just say I am so excited that this blog exist. I have read the post Flying with Broken Wings. Which help explained a lot of things I have been going through lately. On Valentines Day 2008 I had surgery to remove a goiter and a good portion of my thyroid. Which I have now learned will make me Hypothyroid forever. Since I have had the surgery my medication has been changed numerous times levels have been way too low. Some days I feel like I am just dragging and others I feel normal. Last Summer I had a bout with Hypertension. I am just 38 I may not eat right all the time but I did not do anything different to bring on hypertension I stop eating pork because I thought this was the reason even though I did not eat it as much. I have taking kickboxing,walk to work,walk around the track and I got on the scale recently had found out I was 300 pounds. Which made me cry and depressed. I have not told my family about my weight gain because they are all ready having problems with how big I am now. My mother is afraid I am going to die and I am doing this to myself by not eating right. Which has cause arguments and the start of a horrible Christmas holiday 2009. This Friday I have another check-up. After having my Synthorid raised up to 2 125m. I just hope something is changing for the good. I just want my old body back less 180lbs. I am now looking into going holistic and changing my diet all together so things can get back on tack. Does anyone have suggestions? about anything.

  32. Lori: Thanks for sharing your eye symptoms. It seems many people suffer from these, but from what I know floaters is one that isn’t talked about as much. Personally, I have dry eyes and use eye drops as needed, but luckily they’re usually not too severe, although I HATE it when I am forced to go somewhere where they are smoking. Don’t even get me started on the ineffective anti-smoking laws here. They always manage to find a loophole for letting people smoke in pubs and restaurants for fear of losing customers.

    Lolly: Thanks for sharing – I like your angels analogy.

    Love,

    Sarah

  33. Hey Rissa, I’m so glad my column helped explain some stuff you are going through. I am so sorry about your thryoid misbehaving and that you had to get a partial thyroidectomy. I really feel for you with your weight gain. My whole life my family have been on at me to lose weight – at my largest, I was around 180 pounds, but they are stick insects, so think everybody should fit in with their standards. I get tired of society’s pressure to be perfect and actually never felt that bad about myself until people started harping on at me to fit in with some supposed norm. The point is you need to feel happy about yourself and if you lose weight, you need to do it for you and you alone. It does sound like you are definitely taking the right steps towards losing weight, but with hypothyroidism it can be a painfully slow process. Furthermore, an interesting thing I read was that T3 is supposed to help with weight loss. The Synthroid you are taking now just contains T4, which is converted into T3 by the thyroid, but some people seem to do better on combination therapy, so you might consider trying Armour Thyroid or Naturethroid (probably easier to get than Armour right now, although there are several other brands. Plus there is stand-alone T3 drug Cytomel, which can be combined with a T4 drug as needed) if the Synthroid isn’t really getting you the results you need. Some people do fine on T4 alone though. It’s also worthwhile geting tested for other things such as insulin resistance, which could also prevent effective weight loss. An imbalance in female hormones (PCOS or Polycystic Ovary Syndrome) may also result in weight problems, in particular abdominal obesity. I have PCOS and my doc has me on Metformin to lower my male hormones and, as he put it, to help me lose weight. I’d like to share a link with you to an article I read on Mary Shomon’s site. It shows just what a complicated role our hormones play in weight loss/gain. For instance, there is also something called leptin resistance. The hormone leptin affects our appetite and tells us when we are sated. From what I understand, if we have leptin resistance, we are prone to overeating and it tends to get worse the more weight we gain (just like insulin resistance). I wish you the best of luck, Please keep us posted on how you are doing. My next column is going to be on how to explain the disease to your family – it sounds like your family needs a bit of explaining. Once I explained to mine, they did in fact understand and stopped making hurtful comments about my weight. http://bit.ly/sg14v

  34. Rissa says:

    Thank You. So,much this information as really helped me.

  35. Christina says:

    Reading that Shomon interview with Holtorf changed my life. I was diagnosed 7 years ago with Hashimoto’s and piddled the last several years on a low Synthroid dose and with a doctor that told me that I was just lazy, fat and needed to exercise and wouldn’t do any other tests to find out why I still had symptoms of exhaustion, paranoia, anxiety, achy joints, tired muscles, thinning hair. Over the last two years my weight jumped from 167 to 204 (currently) and I can’t even recognize myself in the mirror. I kept asking myself “Why did I let it get this bad?, “Why did I not love myself enought to fight for myself?”

    Once, I accidently took two of my 120 mgs once and I felt incredible but after 24 hours I was back to being miserable. After that, I wanted to secretly increase my dose. I had dreams about it, obsessed about it and I felt like a junkie . When my doctor wouldn’t even consider increasing the amount, I wept on the phone with the nurse. Whew, I am STILL angry about that.

    However, we moved 6 months ago and I started with another doctor and discovered Mary Shomon at the same time. My husband and I were ruthless and began searching scientific papers, blood panels codes and I walked into my most recent appointment armed with my demands. Lo and behold, my antibodies and rt3 were sky high. Now, my doctor ups my synthroid whenever I call and tell her that the dose stopped working and I FINALLY have an appointment with an endocrinologist.

    On the upside: My family has a history of Hashimoto’s and it’s been a blessing to have people to talk to about thyroid induced depression, panic attacks and exhaustion without judgement.

  36. Liz says:

    Hi Sarah! Welcome! Thanks for your post!

  37. Christina, I am so sorry that you had to piss around with waiting for your doctor to get you on the right dosage of Synthroid. I know that many of us who are diagnosed hypo are very eager to lose the weight we have put on since finding out we have this disease. After my research told me that weight loss tends to be more effective with added T3, I asked our new doctor to put me on it. Since diagnosis last August, I’ve lost at least 10 pounds. Considering the amount of time I’ve been diagnosed (I was diagnosed last August, but my last doctor was crap!), it doesn’t sound that much to me, paricularly as I have also been working out with a personal trainer twice a week. On the other hand, I had lost hope of ever getting back to 70-something kilos – my ideal weight for myself is between 70 and 75 kilos (154 to 165 pounds). I’m 5’4″ and I don’t go by BMI because even when I was super skinny, according to that I was still overweight – for me, this is not a very motivating scale. Wii Fit tells me I am obese when I am clearly not. My point is that it is important to be realistic and go by what feels good to you. One of the main reasons my body weighs more is because I am naturally big-busted whatever my size. I believe I also have big bones and a rather broad frame. I definitely have broad shoulders, perhaps due to the fact I swum a lot when I was younger. I get frustrated that we hypos can’t lose weight faster, but then again it is actually healthier to lose weight at a steadier pace and then it’s more likely that you’ll be able to keep it off. Once I was diagnosed, the fact that I started losing weight at all seemed a miracle to me. I had resigned myself to the fact that, like Bridget Jones, I would always be “just a little bit fat”.

  38. Thanks for your welcome, Liz. Hope you like it:-).

  39. […] 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 […]

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