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Thyme For Literary Healing: How Do We Deal With Doctors?!

Post Published: 21 June 2010
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Category: Thyme for literary healing, Thyroid Patient Health Care Issues
This post currently has 11 responses. Leave a comment

In today’s Thyme for Literary Healing, let’s share our medical stories with each other, and talk about coping strategies. Here are a few questions, to get us going. Please feel free to share whatever you wish.

  1. Have you dealt with medical mistreatment?
  2. Were you misdiagnosed?
  3. How long did it take you to get diagnosed?
  4. Post diagnosis, do you feel that you are getting the proper treatment?
  5. What do you do to advocate for yourself as a patient?
  6. What coping strategies have you developed to improve your relationship with your doctor?
  7. How many doctors have you been through?
  8. Do you have a positive story to tell about your doctor?
  9. Is your doctor someone you’d recommend to another patient?
  10. Do you need a referral to a good doctor?
  11. What is your current thyroid story?

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11 Responses to “Thyme For Literary Healing: How Do We Deal With Doctors?!

  1. Elly says:

    Wow. How many stories flooded into my head while reading this! ahahaha

    I was misdiagnosed for years (even though I had a previous auto immune disease, nobody bothered to do the simple blood test for almost 2 yrs)
    “I was CRAZY and ‘must have eating disorders”…I should have stuck up for myself but I knew nothing about the thyroid, I was scared that I was ‘losing my mind’ and unfortunately had full trust in the Dr.
    Finally, do to an insurance switch I was given my savior nurse practitioner who met with me twice and said “I’m going to check your blood”
    Next day, she had me in her office, took me off all drugs, except the one’s for anxiety, and started me on a dose of synthroid, PERSONALLY made the call to my GP to be seen the next day-

    And the rest would follow-a TT, ablation-years of up/down levels, but I was thankful it was something that seemed ‘tangible’ that was wrong with me, instead of ‘my mind’…
    ‘My mind’ came back with hormone-

    This reply could go on forever-I’ve had a lot of thankful moments (the nurse that caught it) and a lot of efffff you moments-(the Dr.)

    I have been in a rut lately with my health stuff-
    BUT I wasn’t always-

    I think education is the best, nothing better than the feeling of walking into your Dr. with more knowledge than him/her……and walking out with exactly what you wanted, and being right, (I brought up my joint pain possibly being RA, and sure enough I tested positive and now see a rheumatologist)
    If I had known back then, what I know now-

    I guess that’s the best advocacy I can think of, that I did for myself-

    Except a few letters to HIPPA and the Office of civil rights, here and there-ahahahahahaha

  2. Elly says:

    Yikes. Sorry about the wall o text up there!!

  3. Ah man, where do I start!!??!!

    Will try my best to make a short tale out of a VERY long story.
    Lots of docs, for various reasons, all diagnosed me with either dpression or S.A.D. for far too many years. When my goitre started to develop, they all insisted it was just a large neck because I was a large lady…the fact that it was actually a hard lump was of no concern to them, sure how would they know, none of them even felt it!
    Did the ‘ostrich’ and buried my head for a few more years, then found a doc who did concede that perhaps there maybe a thyroid issue going on with me. She referred me to a specialist, who was a total wan*er – and told me straight to my face that the lab ranges were only to show what the results “shouldn’t” be, and the fact that all my bloods were way out indicated that everything was grand. He also told me that my goitre was my issue and mine alone. That I should stop being so vain. That he dealt with people who were more disfigured every day, that I should just cop on to myself, and if it bothered me that much I should just wear a scarf or a turtle-neck.
    So on the basis of that I turned ‘ostrich’ again, until one day I contracted a bad case of cellulitis, and had to see the out-of-hours emergency doc. She turned out to be lovely, and more importantly local. After she had sorted out my cellulitis (it took several days of very strong antibitics before we got it under control) she just said to come back and see her soon, in her own surgery as she wanted to check my thyroid function.
    And thats when it all started going well for me. She put me on her patient list (a much envied position, she’s a very popular local Dr with a long waiting list!), and got the ball rolling, referring me to an excellent endo and its all good from there on in. Don’t get me wrong, we’re still battling very hard to get my levels right…but I have complete faith & trust in my current medical team (my doctor, my endo, my ENT surgeon, my opthalmologist and my dietitian) they are all great people, we all get on well, and they all work together well…and long may it continue!

  4. Absolutely echo what Elly said too…education is the key.
    Don’t go in there like a sheep and just agree to whatever you’re told to do. Research, research, research..and don’t be afraid to let them know that you do actually have half a clue about what is going on, and you have done your own hoework with regards to how to deal with it, then they are less likely to fob you off. Oh and don’t be afraid to argue too, if you don’t agree with what they want to do…if done well, you’ll soon have them seeing things from your perspective ha ha!

  5. Elly says:

    “When my goitre started to develop, they all insisted it was just a large neck because I was a large lady”

    Fuzzy! When my thyroid finally had just died-I gained about 60 pounds in 4 months or something, and I actually thought that when mine first appeared “man I must be gaining some weird neck fat” ahahahahaha Sad but kinda funny looking back on it, like who gets a concrete hard lump around their neck from weight gain? HA! Not too mention another growth of ‘fat’ on one side…..

    Glad you have a team you trust! I have one, I just need to be more proactive with them now!

    And yes argue if you have too! I once said something snarky to my Dr. and I thought ‘well he should know I’m gonna be nasty, he sees my labs” HA!

  6. Dear Thyroid says:

    Elly, never be afraid of writing novel length comments on Dear Thyroid, and please don’t apologize. I loved your story, though it saddened me deeply, I appreciated your honesty and bravery.

    Thank you!

    xo

  7. Dear Thyroid says:

    Fuzzy, so sorry you had to go through the vile experience, and over the course of years, that you did. I really wish you didn’t have to endure any of it. that being said, I’m so glad you found an excellent endo. This is great news.

    as we all know, healing is such an arduous process.

    keep fighting, kid.

    xo

  8. Dear Thyroid says:

    Elly, you had a goiter, too? I never had a goiter, Katie, here, but I did have a thick neck due to Graves and a swollen thyroid. Crazy. love when docs tell us we’re just fat, or insinuate as much.

    Good for you on advocating for yourself as aggressively as you are, Elly! That’s the only way to go, especially if the doc isn’t listening. Being proactive and educated helps so much, doesn’t it?

  9. Janel says:

    I began having symptoms at 31 and it took me a year and three primary care doctors to get diagnosed. Doc #1 was “you know, black women are supposed to be overweight.” Yeah, the fatigue, 20-lb. weight gain and temp of 96 degrees in the office didn’t clue him in. Doc #2 was “you need to eat less, exercise more, and take a diet pill. Come back in three months.” I wrote him a nice-nasty letter firing him. I bullied doc #3 into writing a specialist referral because I had been symptomatic for a year. Currently on doc #4, whom I adore. He is fabulous, really listens, communicates with my endo, and doesn’t rush me out of the exam room.

    My first endo correctly diagnosed me, but was in bed with the Abbott rep and would only prescribe Synthroid. It was my fault that I couldn’t lose weight, still felt bad, and grew a goiter. Fired him, found endo #2, who prescribed Armour Thyroid, and felt human again for the first time in two years. Shrank the goiter, too. Currently on endo #3, who is young (my age) and was just starting a solo practice when I switched to him. I am enough of an anomaly to broaden his knowledge base, and he does what I tell him. At first he wasn’t comfortable with Armour, and we experimented with synthetics. But when he realized my quality of life was better on NDT, we switched back, which was about five years ago.
    I would recommend both of my doctors; if you’re in south Florida, my primary is Eddy Perez-Stable, and my endo is Todd Darmody.

    I’ve found that I’m more concise when I write down my concerns before I see my doctor. I also research anything that may be a concern for me or him. I refuse to let my doctor talk down to me. The way I see it, I’m the expert because I’m the one living in this body. All he can do is poke, prod, look and listen. For example, I feel much better when my free T-3 is below range. This made my young endo nervous, and he kept mentioning the risk of osteoporosis. Finally I looked at him and said “I’m not white or Asian, small-boned or menopausal. You mean this is my only risk factor? I’ll take it.” My meds stayed the same.

    Currently, my thyroid is okay. I switched to NatureThroid last year because I had a reaction to the new fillers Armour started using. I feel pretty good 90 percent of the time.

    • Lynne says:

      Hi, Janel,

      I hope all is well. I moved to South Florida and am looking for an open-minded endo to treat my Hashimoto’s and hypothyroid condition. I was wondering if you were still seeing Dr Todd Darmody. If not, do you have another endo you would recommend.

      Thanks much,
      Lynne

  10. UnicornPookie says:

    Hi. Okay, here are my responses to the questions.

    1. Have you dealt with medical mistreatment?
    No, I was diagnosed at a very young age, but the treatment plan I was on back then was horrible, so the doctor stopped it. I didn’t get back on any medication until I was 20/21.

    2. Were you misdiagnosed?
    At first no, I wasn’t. After the long spell of not being on any meds, and I started sleeping two to three days straight without waking up, I decided to get myself checked out. I told the doctor about my thyroid issue when I was younger, but he said no, it wasn’t my thyroid, it was mono. So he tested me for mono, but for safety sake, decided to test my thyroid levels too. It wasn’t mono that I had. He didn’t know how I was even walking, my levels were so low.

    3. How long did it take you to get diagnosed?
    I was diagnosed at first when I was young, around 5 or 6. I remember the doctor sticking me to take blood, then didn’t put a band aid on where he stuck me, and the blood kept bleeding, and was running down my arm. He finally put a band aid on it. Then I wasn’t seen for it until I went to see a different doctor when I was 20 oe 21.

    4. Post diagnosis, do you feel that you are getting the proper treatment?
    At the current time, yes. In the past no. I have always had to fight with my doctor over the issue of my thyroid. Either the doctor didn’t want to listen to me or treat my thyroid problems,or he did, but not correctly. Why is it always a fight with them over thyroid issues?

    5. What do you do to advocate for yourself as a patient?
    I do what I can. I have always had to fight the doctors over my thyroid issues. Today, I fight my doctor and my husband over it. If I take my thyroid meds, they wind me up, my brain won’t shut down, like tonight. My doctor gets upset because he hates to prescribe me anything for sleep, and my husband gets upset because I can’t sleep. He always tells me I need to go to bed. I usually give in to him in the early morning and go to bed. I don’t sleep, and when I do it’s because I have cried myself to sleep. It just seems like no one wants to understand what I go through with this stuff. It’s hard, but I muddle through. I dread to see the night come in, yet at the same time, it’s okay, because if I’m not tired, I tell my hub to go to bed, I will go if and when I get tired. Or I go the other route, stop taking the thyroid meds, so I can sleep, but then get bad readings on my levels when I do my labs, then have my doctor on my butt for it. I just tell him I can’t fight both him and my hub with this, someone needs to give in and start understanding me and where I am at and where I am coming from. My doctor said it’s all in my head that the meds wind me up. Wish he lived in my body for a while.

    6. What coping strategies have you developed to improve your relationship with your doctor?
    I tell him that if he is a doctor, my doctor and if he cares, then he will start listening to me and working with me, not against me. I can’t live with working with both him and my hub and both are on different tracks than I am. I don’t think I will ever get them to understand.

    7. How many doctors have you been through?
    Ha Ha.. Too many to count. And all have their own opinion of course on what is going on and what is right and what isn’t right for me. If my husband had a degree and was a doctor, he would fit in well with them. LOL

    8. Do you have a positive story to tell about your doctor?
    Ummm. No. He is totally sooooo not understanding and uncooperative when it comes to dealing with my thyroid issues, and my weight issues, which he knows darn well are tied in together.

    9. Is your doctor someone you’d recommend to another patient?
    Nope. No way. To me he is the most non-understanding I have dealt with yet. I’m glad I only see him twice a year, if that.

    10. Do you need a referral to a good doctor?
    Yeah, but he won’t refer me to a specialist or a doctor that knows about the thyroid issus and all. That’s why I have written to the Senators of my state, and representatives and the patient advocacy office on him. He thinks ALL problems arise because you don’t walk. I told him the last time he told me that, to put my shoes on his feet, walk in them for a day and then tell me that it’s all from not walking. I got him sooo beat it’s pathetic. Why must we have to fight to get the care we need??

    11. What is your current thyroid story?
    Wow.. long one. Will copy and paste it here. Hopefully it’s not too long and will post. **crossing fingers**

    1.) I don’t remember too much about my life while “dealing” with the thyroid issues, mainly because I was a kid. I do remember at an early age, my mother took me to a doctor that was at the time, too far away, from where we lived. He put me on Iodine drops. That didn’t last too long, as my mother got tired of my being up all night drinking water, because the Iodine dried my mouth out. After that, I was not on anything for my thyroid issues. I gained a lot of weight. I remember going through school always on the heavier side. However, that wasn’t because of what I ate or not being active. I did all sorts of things. Just people didn’t see it that way, but they also didn’t know what was going on medically with me either. When I was finally on my own, and working, at the age of 20, I began sleeping two to three days at a time. I never woke up during that period to go to the bathroom or anything. My adopted mom told me I should get checked out. I thought it was either the thyroid, or my working so much. I used to work 75 hours plus a week. (total work-aholic). I finally went to the doctors to get checked out. He told me that mono was going around, but he would also run the tests to check my thyroid too. When the results came back, he called and told me he didn’t know how I was even standing, as my thyroid levels were too low to even be picked up with the blood tests. So mono was out, thyroid was in. WoooHooo I told him that and could have saved money on the tests had he listened, but oh well. That’s history. LOL He immediately put me on thyroid meds, which just a few months later, got “taken” from me, as I joined the military. The prescription I had was written and filled by civilians, so they took the meds from me, and I wasn’t placed back on thyroid meds until almost two years later. So much for trying to get things right, huh? Once I got put back on my thyroid meds, I felt different. I became more hyper than I actually was, and felt like I was starved to death for months. Today, it’s still a side effect. I doubt I will ever get used to that. My doctor today and I fight over it, because I don’t eat, I hate to eat, and the only way I will/do eat is if I take my thyroid meds. It’s also the reason I don’t take them. LOL I am currently in college, so when I wake up and don’t feel like doing much, and know I have school that day, then, yes, I take my thyroid meds, mainly because they do wind me up. I ignore that it makes me hungry. I would rather drink fluids than eat even today. My doctor keeps telling me I need to lose weight, which doesn’t much help with the self-esteem, as weight has always been an issue with me, but hey, since April of this year, I have lost 25 pounds. Part of it is because I am trying to, but part of it is because I don’t eat and take my thyroid meds, and fight the “feeling starved to death” feelings by loading up on liquids.

    2.) My self-esteem has always been low, mainly because of my weight, but also due to my biological family. No one can hurt you more than your family can. I mean, if your family calls you “chunky, fat-a**, and such”, what does it mean when your friends and strangers do too? I have always been active, with the exception of when I was 20 or 21. I just figure out that whether I wanted to sleep or not, I didn’t have a choice to, I had to move and go to work and such, sleep was out of the question whether I wanted to sleep or not. How does it differ today compared to then? It’s fine. I have cut off ties to my biological family, for more than reasons mentioned here, but mainly for own personal well being and sanity. They can’t control me anymore, and I won’t allow them to, and that’s okay. Before, I couldn’t do that, but not anymore. The mental, emotional, and physical stress and abuse was enough, and today they don’t like me because I am my own person, and they can’t control me. That’s okay. They have a right to feel the way they do, just as well as I have that same right.

    3.) Did I feel that anything was possible? No, everything was totally impossible. Anything and everything I wanted, I fought for myself to get, to do. I had to psych (sp) my mind up to do things. At times, I literally had to force myself to do things, whether I had to do things or not, like work and whatnot. Sometimes there was just no feeling or energy there to do anything. At other times, there was more than enough needed, especially if I took my thyroid meds. To reclaim myself, I have totally disowned my biological family as stated above. I had to for my own sanity. Today I have my daughter, and I will not let them mentally and emotionally abuse her as they did me. They all know her, and have met her. They have tried to tell her what to do, and she in turn has literally told them run your own life, leave mine alone. I am so proud of her. I wished I were in the position back when to do that, but I wasn’t. I am today however, and have done so. My self-esteem is much better today because of it. I should have made that step a lot sooner, and I regret that I didn’t. I still deal with the thyroid issues, but that too is on my own terms. Even with my doctor. He knows what buttons to NOT push with me, and he knows when he is getting close to pushing them. Telling me to walk more or exercise more is totally out of his vocabulary at this point with me. I just tell him when he does say it, to walk a day in my shoes, and then tell me that you still want me to walk, etc. He shuts up. LOL Today, I am not the over weight kid in the neighborhood. Sure, I am over weight, but I am working on that. On top of having my thyroid problems however, I do as I can. I also have RSD, which is the opposite of MS. The meds to treat that alone makes you gain weight, which is another reason why I take my thyroid meds on my terms. I walk more than I should, as it’s putting me in a wheelchair well before my time to be in one, at the same time, walking helps me to try to stay out of it. If I have a hurry up day at college, I take my thyroid meds. They make me hyper, hungry and all I need to do is drink lots of fluids, and I am fine. I can “crash” after the day is done. Today I am my own person, controlled only by myself. If I want to sleep, I sleep, if not, I don’t. The ultimate decision in any factor of my life though, is my own, not anyone else’s, to make. So today, I live for me, and I watch my daughter live her life for her.

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