<p>Some of you regulars may have noticed I’ve been MIA for a couple of months. I’m not quite ready to come back to CC full time, but I did remember this thread, and felt impelled to tell my story. Over two months ago I hit a wall with anxiety that was so debilitating that it turned into depression. I won’t go into details, but it was bad; I was convinced I was going to have to commit myself to a residential treatment center. I had a doctor that kept throwing psychiatric drugs at me, changing dosages, etc (I have prescriptions for four different psych drugs as of a month ago). But I wasn’t really getting any relief. Someone suggested I follow up with the endocrine surgeon who initially diagnosed my Hashimoto’s over 15 years ago; in his prime, he was considered one of the top three endocrine surgeons in the country. But it was several weeks before I could get in, and kept getting more and more depressed - I was trying everything possible… acupuncture, reiki, supplements, etc. - anything to find the answer to the problem. So I saw the endocrine surgeon last week, and low and behold, my TSH number had dropped from 2.166 in April, to .81 two weeks ago. In conversation, we discovered it happened due to one little change I made - all 15+ years I’d been taking levoxyl, I’d been taking it with other meds and food. A few months ago, someone stressed to me how important it was to take on an empty stomach and with no other foods, so I started doing that. The endocrine surgeon told me that you lose 50% of the drugs effectiveness when you take it with food and/or other medications. So you can imagine what happened… when my body was getting ALL of the medication, it was too much, and I became hyperthyroid. I have now lost almost 25 lbs. since Labor Day, too, and he was very concerned about that (no other doctors seemed to be alarmed about that because I told them all I had lost my appetite due to anxiety). He encouraged me to find a competent internist (because I had been to several specialists looking for an answer to my condition) who could oversee the transition to a new dosage. In the course of seeking out an answer, I had many, many tests done; the biggest things that came back (other than the TSH), are low vitamin D, low B12, low ferritin, and I have restless leg syndrome during stage 2 REM sleep - I have 41 leg movements per hour. Medications began to make my stomach upset, so I had an upper endoscopy last week. Esophagus is fine… stomach lining was a bit red, so she biopsied it for h pylori (which I’ve had before). I was also diagnosed (yes, I know it’s a controversial diagnosis) by my allergist with intestinal yeast overgrowth. I flew a relative up from Texas to stay with me for a week, because I couldn’t be alone during the day… it was that bad. So the endocrine surgeon immediately lowered my levoxyl from 100mcg to 88mcg, but said it would take 2-3 weeks before I’d notice any symptom changes.</p>
<p>In the meantime, since last Thursday, I’ve spent hours on the phone trying to find a competent internist who could oversee all of this (the endocrine surgeon doesn’t want to take over my primary care, and besides, his office is an hour away). He is very discouraged with the quality of internists out there these days because so many of them have been bought out by conglomerates and are dictated to by the insurance companies; he didn’t have anyone to recommend. The ones I did find out through word of mouth were either not taking any new patients, or it would be January before they could see me.</p>
<p>Today I lucked out… I was given the name of an endocrinologist downtown (yea, an hour away, but I was desperate) that is highly respected regionally. I called his office and cried mercy, saying I was in a thyroid crisis, and could I see this doctor. He was not available until next week, but one of his partners (there’s three docs in this office) had a cancellation today at 2PM. It took all of my resources, but I got my butt down there. He spent almost three hours with me, going over the whole sordid history, symptoms, etc. He also did a very thorough exam and did some more blood work (5 tubes!). My resting heart rate was 90 (when I was exercising and in shape, it was 65-66) and ketones in my urine indicated my body was breaking down fat for energy. </p>
<p>He agreed with the decrease in levoxyl dosage, but had a couple of other suggestions - that I take a 48 hour vacation from the levoxyl so that the medication will exit my system a bit quicker, even with the half life of seven days. Secondly, he wrote me a prescription for a beta blocker to help bring down my heart rate. With this, a two-day levoxyl vacation and some xanax as needed, he thinks I should see some improvements in my symptoms until the new dosage can kick in. </p>
<p>I’ve spent many, many hours educating myself since I began suspecting it was my thryoid. I would highly recommend a website by Mary Shomon… she’s a thyroid patient advocate and has written six books. Learning about the thyroid from her helped me create questions for the doctors I saw. One of the most important things I learned is that, although most labs use a reference range of around .4-4.5, the American Association of Clinical Endocrinologists changed the recommendations seven years ago and are recommending a much narrower range. I’ve learned most people feel their best when it is 1-1.5. And you absolutely need to have FT3 and FT4 checked. There are so many places the thyroid’s communication with the rest of the body can break down, and TSH is not the only test a physician should order when suspecting thyroid issues. Breakdowns can occur in the conversion from the FT4 to the FT3 (you can still have a very normal TSH); it can break down in the transport to the cells; the absorption of the enzyme into the cells can be hindered; and there may be an issue with the receptors in the cells. So you can have normal blood tests, and still not be optimally treated for thyroid issues. </p>
<p>I have learned the very hard way, and I wanted to encourage anyone who has thyroid issues to find a competent doctor who will not only use the newer recommended standards, but who will also listen to how you feel, even if your TSH falls within the new standards. This new endo has said wants to see how I feel once I get up above 1, and if I’m still having hyper symptoms, he will continue to increase it, little by little until I get into the range where I feel my best. </p>
<p>My life in the last couple of months has basically consisted of sitting at home, doing next to nothing… not going out unless it was for a doctor’s appointment. My brain was foggy, I had no concentration or ability to focus (I had to make sure I had people going with me to different doctor’s appointments because I had a hard time articulating what I was experiencing, and often could not remember everything they told me). I have not worked out since early October, because I have no calories to spare. It has been a miserable existence, but as of today, I have hope that I will pull out of this. The new endocrinologist has offered to be my new primary care physician, but we’ll see how that works with him being downtown; he thinks once we get this stabilized, I shouldn’t have to see him very often. Funny thing about finding him… we have always had United Healthcare and his office doesn’t take it. During open enrollment period last month, we opted to switch to Blue Cross/Blue Shield, and his office DOES take it!</p>
<p>Anyway, I just wanted anyone here who continues to deal with ongoing thyroid issues to not give up, and find a competent physician who will look beyond the numbers. They are out there.</p>
<p>It may be a while before I am back on CC again, but I will be back once I am feeling better. If anyone has any questions about my experience/endocrinologists/etc., please feel free to PM me.</p>
Will report back after seeing GYN.</p>
) and he said, “I hate that for you” with a smirk, I decided I needed to seek medical care elsewhere.</p>