Summary of Where I was as of 9/23

In 11 1/2 years I have seen a total of 9 doctors. Two were work related physicals and two were for prenatal care. The others were just regular doctor's visits for allergies or symptoms I was having that couldn't be explained. The first time thyroiditis was suggested to me was when I was 15. The doc said I had an enlarged thyroid and asked my mom if I'd been tested. No test was done at that time, but he suggested it in the future. That was when I was 15! SEVENTEEN years ago! I am now convinced that I have had hashimoto's disease for at least that length of time...likely longer since it takes time for a thyroid to enlarge. When I was 18 and paying my own way I did opt to be tested and everything came back "normal." What I would give to see those lab results now.

I was not tested again until I was nearly 22 (4 days before I turned 22 to be exact.) That was after a work related physical 5 months prior indicated I had an enlarged thyroid. I told the doctor then, that I'd heard that again and again, but since I have never had any corresponding symptoms no test was done. He highly encouraged me to watch my symptoms and gave me a list that included hair loss among other things I can't recall now. Sure enough, in April a week or so before my birthday I realized I was shedding like crazy. Went in, got tested. He called me April 20th to tell me I am hypothyroid. I didn't know what in heaven that meant. Thank goodness ask jeeves existed. That was 1998, and there just wasn't much available to me. But before hanging up the doctor said... "Don't worry. If there's any disease in the world you'd have to have this is the one to pick." From then on I didn't worry too much about it. He put me on levothyroxine which was supposed to replace my T4 hormone that my body wasn't producing enough of. Once my TSH was in the normal range we kept the dosage there. I stayed there for three years in which time I began eating healthy and lost the weight I'd gained and even managed to have a baby without any changes in my tsh level. At that point I really thought the doctor was right!

After that baby I could not lose the weight for anything. I made a move with my husband which necessitated a new doctor. This new doctor was great. But even then my thyroid problem was never explored further than just a tsh and slight increase in my thyroid replacement. With that increase I found it easier to get the weight off, but a lot of symptoms lingered. I just chalked them up to just being the way I am. Once the weight was off and I felt a bit better, we still kept the thyroid placement there at .088mcg. Originally I was on .075 so even that small change made a difference in how I felt and functioned. What did my doctor do? He listened and made a change. Maybe if he'd done an antibodies test, or I had kept better track of it, I could have saved myself the following 4 years worht of heartache.

Then in 2004 I went through some stressful life experiences that included finishing my put-off-for-birthing-children college degree. Once I graduated I found it hard to find a job that met my education level because of being in a rural area. I became depressed...did the thyroid cause the depression or did the depression cause the thyroid problem? Who knows...point is, I gained weight, TV became my best friend, not to mention the inability to get off the couch, the problems I had waking each day and getting out of bed. I woke tired and never feeling rested. My allergies were in high gear. Everything seemed broken...well, except my husband and children. I stopped seeing friends or answering calls. Stopped volunteering at the school. I read books and watched TV almost continually. This stopped for a brief period when I felt a bit better and ended up directing a community play for children. Then I went right back to it.

Then in the summer of 2005 we moved again. Again for my husband's career. The depression like symptoms continued. I continued to gain weight. Finally in January of 2006 I saw a new doctor. She tested me...yes my TSH was high. I got put on .075mcg. I've been there ever since. The weight continues to pile on. I saw my doctor again 6 months after my tsh was in the "normal" range. I complained of not feeling well despite eating right and exercising and I was really frustrated with my inability to lose weight. I went in once having palpitations and dizzy spells. She had an EKG done. Her solution? Eat less, exercise more-I need to lose the weight. Oh, you are? Are you sure? Well, if 45 minutes of exercise 5 times a week isn't doing it then maybe you need to do 60 minutes 7 times a week. Never once did she suggest looking at doing doing other thyroid tests besides the TSH. Never once did she suggest I had something other than hypothyroidism and that being the case the TSH was the determining factor of my treatment.

In the fall of 2007 she refused to refill the thyroid meds without a tsh. At that point I decided I needed a new doctor since I was having severe clotting during my menstruals and I never felt good, I was constantly tired and lethargic. I couldn't lose weight despite regular exercise and low-fat dieting. I was up to exercising 1 1/2 to 2 hours 5 times a week. Somedays I even managed to get 3 hours in.

At that point I got online and started doing research again. I learned a lot. Found myself a new doctor. She's young and I figured she'd be more up to date on thyroid treatment. Her solutions: keeping my thyroid replacement at .075 and birth control pills to basically eradicate my period completely. 3 days later my TSH came back at 3.55, within her labs normal range. I called back asking for an appointment to discuss lowering that to under 2.0-or at least under 3.0 as per the American Association of Clinical Endocrinologists recommendation. I go in...she says doing that won't change anything and instead gives me her diet to do...and keep up the exercise.

In February I go back for a check up having lost not a single pound and still not feeling better. We change birth control pills that won't take the period away, but will help with the acne, the cramping, and "unbalanced" hormones. We retest the TSH-now it's at 3.64 no change-according to her.

I decide I need to find a doctor who will listen to me. I see a new doctor in March of 2008. This guy I go to church with and naively think maybe I'll have a little leeway with him. Lab results in hand I sit in the lobby and see a handout from the manufacturers of synthroid also recommending TSH should be no higher than 3.0. I think to myself "YES!!! Finally a doctor who knows this and recognizes it." Much to my disappointment he tells me the same thing my former doctor did. Oh, that doesn't have anything to do with weightloss. You're so close to under...this .64 does matter. I'm thinking to myself...wait, if the healthy range is a total of 2.7 points and I'm off by .64...that seems big in proportion. I mean that's nearly a third of the range that it should be in. So I tell him that and I ask if we can at least try to get below 3.0. Not right now...let's see you again in 4 weeks and see if there's a change. By the way, at this point my allergies have been the worst of my life...since September the previous year. I'm talking using an inhaler up to 10 times a day. We did address those by throwing a bunch of expensive medicines at it. Medicines I can't afford! By blood pressure was also registering high and so we through a $60 a month prescription at that too. I was up to nearly $300 a month out of pocket for medication each month.

April 2008: We retest the thyroid and I tell him that I have a constant tickle in my throat and wake nightly coughing and clearing my throat. My husband says I clear my throat even in my sleep. Solution: wait for TSH results and try a new blood pressure med. At this point I am at 180 pounds. A week later my TSH comes back at 3.69 and he still refuses to make a change to my dosage.

Since then I have put on 20 pounds, putting me at my highest weight ever. My allergies are little more under control. My ankles swell almost on a daily basis and I've developed symptoms pointing to plantar's fasciitis...which makes it very hard to exercise. I've been trying to lift some weights and getting a weekly walk in on the day I actually feel up to it.

Last Tuesday, on the 23rd , I told members of my fitness club that I felt like giving up but part of me won't let me do that. I'm just too stubborn and my flame of hope hasn't quite died out. I'm convinced all these troubles have something to do with my thyroid and that I just need to find a doctor who will work with me.

Wednesday I get to work and decide to visit Mary Shomon's websites again. I discover she has a handy dandy doctor finder! A database of doctors known to dig deeper and think outside the box when it comes to thyroid disorders.

I make an appointment for the following Monday (yesterday) with a Dr. Robert Devries. The supersticious person inside thinks finding a doctor named Robert will make a difference since my brilliant-no seriously genius IQ-son's name is Robert. I am hopeful again!