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An Unnecessarily Long Journey Back to Health

Post Published: 05 April 2010
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Category: Dear Thyroid Letters
This post currently has 10 responses. Leave a comment

(Dear Thyroid Letter, written by, Charles Taggart – Enlarged Thyroid, among other conditions)

Dear Thyroid,


I’ve had thyroid problems since they found my thyroids to be “oversized”  in eighth grade. Every three months the local doctor would have me tested, starting with radiology tests, then just blood tests, until I finished high school.   It wasn’t until I was in Syracuse University in 1990, that I started to experience problems.


I am a male and now 44ish, I didn’t seem to need any extra medical help with my thyroids until I was in college in 1990. My grandparents lived near Syracuse University, so moving in with them was nice; I started to gain weight (which I just contributed to my grandmothers great cooking), but then I gained a lot of weight, over 70 pounds in one semester and I started to get odd mood swings. My thinking seemed to be challenged, easy things started to be hard to figure out, and even my creative ideas seemed hard to come up with. One day I blew up over my sneaker being untied. I tripped over it, then got more mad, kicking it off and getting so upset at denting the bedroom door, I tore the door off its hinges;


It was at this point, my grandmother said, “Something is amiss, and we need to get you checked out by a doctor…,  They found my thyroids weren’t doing anything, and tried to jump start them, with small doses, then stopping, and starting over again, until they felt certain I needed supplement thyroid meds, which he told me I would be on for the rest of my life. I discuss this in more detail in a blog entry.


Once the doctor in Syracuse found my correct level, all was good and told I shouldn’t need testing but every two to four years. He gave me med refills for six months at a time, telling me that if I noticed any problems, to call to get my thyroid blood levels tested. I lost the extra weight, and my grades went up and I finished college. I had no problems until I after I finished college and moved back home to my small town with no stoplight. The local doctors said they weren’t sure my thyroid levels where “correct”, so they had me come in for more testing—one visit to weigh me, the next visit for the blood test and a third visit to tell me in person my levels were fine, three or four times a year at the cost of about $350 for the three visits, a total of $1000-$1400 just in testing, paid out of pocket.


Eventually, I was able to get the doctor to just call me on the third visit part, and just let me know if there was a change, but about eight years later I wasn’t able to afford the time to go in and get tested. I was working and the work crew depended on my driving them to the work site, so a couple hours at the doctor’s office would cost the client more then five hours of work time for the project. The doctor’s office didn’t seem to like this, stating they needed to “make sure my levels where correct, and refused to call in my meds without a test. I told them, “without the meds, the tests would be off anyway, but they still refused to call in the meds. So I went without for two months, and found that my chest started hurting while I was hiking up hills for hunting. So back I went to the doctor’s office and they got me back on my meds, and back to level fairly quickly.


Then two years ago, the same thing happened. They again refused to call in my meds without a blood test, saying that I hadn’t been in or called in two years. I asked, “Then who has been calling them in?” and I added that I still felt fine. They still refused to call them in, even to get the next test for the following month, so I tried looking for another doctor. The next one wanted to restart me at a 25 mcg with increases of 25 mcg every six weeks until I was back to level. Since my last prescription was 175 mcg, I estimated that with six to eight week increases, it would take me seven blood tests and over a year to get back to the correct level. The doctor told me it was the “law” that I be tested every year. This I found odd, as I knew other people who where only tested every two to four years, or if they where noticing problems with weight gain or loss, and problems with too much or little sleeping, so I stopped going to her and looked for another doctor. Again.


During this time, I continued to gain weight and started falling asleep without notice, sometimes at the keyboard, and once while driving. While visiting my mom, she noticed my slow speech and falling asleep, and noticed my legs feet and hands seemed to be getting enlarged, and my face was gaining weight. She thought I might be showing the signs of being off my meds far too long, and I should go see a doctor when I got back home. I planned on it, but was still looking for recommendations from friends as to a doctor who would listen. I started to notice I was also fighting off colds a lot, which was odd. I could count on one hand the number of colds I had had since high school, but I wrote this off to just getting older. I also started to notice I was feeling cold all of the time, even when the house was at 80 degrees with my wood stove going full, I felt cold in my legs and arms. My hunting season I didn’t get to do, because I was always fighting off a cold, and the hike up the hill seemed to cause pain in my chest again. One day, while sawing a tree down for firewood, I felt pain in my chest and became dizzy and slipped onto the ground, with chainsaw in hand, and I felt pain in my chest. This just wasn’t right, so had a friend bring me to the ER.


The ER did a bunch of tests, and told me my heart was fine, and that they didn’t believe there was any association to this with my thyroid levels or not taking my meds, which didn’t sound right, but I listened to them. They arranged for me to see a doctor and made it sound like he was a specialist with a six-week waiting list. I saw him and they went to do the same tests they did in the ER. I said something about this, and then they found my records and made an appointment for five weeks later to come in for a stress test and then thyroid blood work testing. I blew up, cussed up a storm, and said, I could get the correct tests done sooner at my own town doctor’s office. So I made arrangements to do that.


The local doctor’s office had gained a new doctor, and I requested meeting him. He stood there with file in hand, and truly listened as I gave my tale of the years of thyroid problems. I told him that I felt like my health was being blackmailed into more tests than needed, that it didn’t seem right, that I knew other people who were tested every two to four years, when this office seemed to think after 18 years, my levels still aren’t correct. He agreed, and started me out on the meds at half dosage, telling me to get another blood test in six weeks, then he would approve an increase, and should be close to only two increases to get me back to the level I had been on before, and he also told me to rest a lot.


I spent the last few months resting, and took the second blood test; I get the results this coming Monday. My room renter has said he noticed that I’m losing weight in my face and body, and my speech is becoming clearer. I’ve also noticed I am no longer falling asleep as often in the middle of typing or being online, and my thoughts are back to full color pictures in my head. I’m starting to see 3D again in my ideas and mapping concepts out, and I’m not feeling as tight in my chest either, when lifting something I use to think as light, like my chainsaw. I’m planning on going out again soon to cut firewood for my house, instead of using electric heaters. I should be back to getting to 110% mental and physical health in another two to four months! This new doctor ROCKS, he seems to truly listens!!!- Dr. Glosenger at Candor Family Practice in Candor, NY.


Charles Taggart

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10 Responses to “An Unnecessarily Long Journey Back to Health”

  1. Charles, thank you so much for sharing your story. I can’t believe how much you have been through! All the damn testing can really piss a person off. It seems that we have spent the last few Saturdays at our doctor’s office (both my fiancé and I have Hashimoto’s). He is a good doctor, so is also popular and sometimes you have to wait a long time even when you have an appointment. I am glad to hear that you are making progress and wish you continued good luck with your new doctor.

  2. Charles, the way your doctors handled you is unbelievable. Nobody deserves that kind of treatment. It shouldn’t take years and years to find someone who is willing to restore wellness to your life. I am SO glad to hear that you finally found a doctor who listens to you. I hope this makes a world of difference and that you can get your life back!

    xo,
    Joanna

  3. Christine says:

    I am so glad to hear that you are getting back on track and feeling better as time goes on. I can’t believe all that you’ve been through, the ups and downs must have been just brutal on every level imaginable.

    Continue to take good care of YOU having a doctor who understands you and can work with you is key. So glad to hear you’ve got that going on for you now.

  4. Donna says:

    Why are doctors said to have a pracitce? Because they practice, practice, practice (unfortunately on you). Its a joke that isnt too funny when your health is at stake. Glad you finally found one of the focused and attentive ones so that you can begin to clear up your health issues.

  5. Robyn says:

    At my (veterinary) practice, we do REQUIRE lab monitoring for some medications. But, we also have common sense. If someone can’t come in and needs meds, we give them (in a smaller amount) and schedule the appointment for labs. We also try to make getting the labs as convenient as possible (tech appts w/o doctor, drop offs, house calls, etc.).

    It’s the common sense that’s missing these days. Sometimes you just have to make a judgement call based on the information given!

  6. Dear Thyroid says:

    Charles;

    Thank you for sharing your story with us. We can’t believe what you’ve been through, are thrilled that you’re finding your way back to wellness. And, and, and you don’t have to go it alone. You have all of us!

    xo

  7. Thank you all for your understanding and taking time to leave a comment; It is helpful to know there are people out there that understand;

    I do want you all to know, I am now finally back to my old level at 175MCG, with the support and service of this new doctor; Dr. Glosenger- he even has called instead of my going in to tell me the blood test results and he would be calling in the last increase- He truly is ASSUME!!!

    My room renter says he has noticed my speech is back to normal and says I am like a new person compared to when he moved in last October though January when I went into the ER; My Mother who lives out of state, says she can hear and notice my speech and clearer thinking just talking with me over the phone;

    I’ve notice too, as I had an interview for a tech business online radio show in November with http://www.blogtalkradio.com/technicaltidbits about the difference between Blogs and Websites, I felt I sounded very slow, almost drunk sounding and I don’t drink very often let alone get drunk; In early March, I called the host to apologized about how slow and unprofessional I sounded on her show, which she responded that my information was great and had no complaints from the listeners; She has since heard me on the phone and also noticed the difference too; I told her I felt the difference was like night and day, now sounding like I have drank too much coffee with the speed of my words compared to in November;

    The thing I found most amazing was going to the ER, their saying the swelling in my legs and hands, and the test results showing a problem with my kidneys weren’t anything to do with the lack of thyroid meds; My friend Bob who gave me the ride to the ER and waited with me said, “I’m no doctor, just a retired water treatment manager from Old IBM, but it seems to me the kidney has a gland on it, and if you mess up the flow controls, something is going to back up and go wrong”;

    Then the General doctor near there- a stone throw away from the ER, not only not having my records from the ER, but saying to wait 5 weeks to have “Stress Test” done and also to wait till then for the Thyroid test too; Lets say I had a bit of a “Stress Problem” then; to the point my sister said I shouldn’t speak to nurses like that, as I stormed out; It seems just not right knowing now so many people have thyroid problems and that Doctors in an ER or a Geranial Practice are more up to date with understanding how they work and how many people have this problem;

    But for the local Doc office to have refused now twice in the past a medication which I am on for the rest of my life because they felt I needed to be checked doesn’t seem right either, those choices have truly put my life and health in jeopardy;

    I am now healing well, just waiting to gain back my endurance level now and I think allowing my kidneys to heal the natural way; I am hoping to be back to full 110! Health by June, or that s my goal so I can be able to go mountain biking and also be able to do the harder renovation work to my family farm property so I might sell it to move south to Chincoteague, VA, to open an Internet café with a micro business incubator and a place to sell artwork of the wild ponies that reside on the island;

    I wish to thank Dear Thyroid for listening to my story on Twitter and for asking me to share this with your readers; I only hope that no one else goes through such problems with doctors seeming to think to the money and not the health of the person;

  8. Lolly says:

    Charles,

    I can believe what you have been through as so many have gone before you misdiagnosed told to go away and lose weight or even put on anti depressants all because docotrs don;t interpret thyroid results correctly or don;t even do a thyroid test. It’s criminal to have to go through that for years but I’m so pleased you are on your way to better health.
    and so true about the kidneys and the liver with thyoir disease get to a good place with your thyoid function and they should too. My liver and kidney were both skewed and if one more doctor or ER doc asked me did I drink I was going to have a graves rage i understand your frustation.

    thank you for sharing your DT letter with us you certainly aren’t alone here.

    Lolly

  9. Lisa says:

    Once again, whether or not you have insurance or the ability to pay out of pocket determines how good your health care is. Charles, it sounds as if you are self-employed, and with your health history you probably can’t get insurance, even if it was at a price that was reasonable. Stupid, stupid, stupid, broken system. Before you even consider moving, make sure there’s a competent doctor where you are going.

  10. Thank you Lolly, for your understanding and dropping a note… I hope you will be able to recover with your liver and kidney problems that where caused by bad doctor choices; And yes, I can relate also to their messed up questions!!!

    Thank you Lisa, and yes, I am self-employed, and when I did look into health insurance, out of 12 insurance companies I was in contact with, 6 of them hung up as soon as I mentioned Thyroid problems… It is a very sad our health insurance system is making money on denying those with health problems just to make more money…

    I will be doing a lot of searching before moving south to make sure I have a good doctor that understands thyroid problems; I figure I have about two years before the move, to allow myself to not only get healthy, but also to finish my family farm renovations and to sell it before I can make the move to start my business there in the internet cafe…

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