Tuesday, May 29, 2007

Update Last Doctor Visit

So I went to the Head/Neck surgeon on Thursday. Asked me a bunch of questions, felt my neck and didn't feel the lump. At least I don't think he did, though he said he did. lol He put that skinny tube w the camera down my nostril and into my throat to look around. He asked me if I've been coughing lately. I said that I had for maybe about 2 weeks. It's probably longer than that, but I haven't kept track. He said he could see the irritation in my throat from coughing, but saw nothing else...no tumors, etc. This 'lump' that I feel and still here the clicking from is under my skin. It's either just above the thyroid or on the thyroid itself. I feel like nothing is resolved for me.

Steve says that it's good that there's nothing wrong. I told him that it something is STILL not right. I'm still very fatigued all the time...taking a nap almost everyday. I had to take a nap today just so I would have enough energy to work out on the treadmill. I hadn't been on the treadmill since the trip to Hawaii. Today my goal was to be on it for 2 minutes, but because I was close to doing 3/4 mile, I pushed myself that extra 1:58 minutes to make it exactly that.

I still am pretty frustrated with my HMO, but they haven't heard the last of me yet. I'm going to ask to see an endocrinologist next. I have been trying for 2 1/2 years to get referred, but no such luck. I think since the current PCP (primary care provider) has referred me for all these other tests, she'll probably refer me for this. I'm sure they'd like me to shut up and go away. lol I want to see an endocrinologist who treats on symptoms and would prescribe Armour (pig thyroid hormone) if it might help. Finding this certain endocrinologist is going to be difficult.

Next appointment up...my ob/gyn. I'm going to ask for a uterine ablation. That time of the month has been hell on me between my tubal ligation and the start of my thyroid issues after the birth of my last child in 1999. If I had my way, I'd have a hysterectomy. But I think that would be highly unlikely for two reasons: one, they don't do it just because you want it, and two, even though I'm a stay at home mom, I can't afford to take that recovery time that it requires. Steve is gone 12 hours a day or more, and I am the one responsible for all things concerning house and kids. June 12th is when that appointment is up, and I'm trying not to schedule anything else until then. Well, maybe try to see about the endocrinologist. Or I wonder if I should ask my ob/gyn if she knows someone good. I just don't know.

Tuesday, May 22, 2007

I finally emailed my primary doc a week or two ago stating my frustration and how I still felt like there was something in my throat that may or may not be affecting my left ear. The left ear has some discomfort and has for a few months now. The feeling in my throat had always been on the left side, but now I've discovered something.

I keep hearing and feeling a 'clicking' in my throat. Steve could even hear it at one time. I started to feel my throat and discovered a lump on the right side of my throat. Searched online to see what could be the cause and most, who say they have had that experience, say that it involved their thyroid. Great, something else in my life with Hashi to look forward to.

I have an appointment with a head/neck surgeon on Thursday in a city that's about 45 minutes from here. Another wonderful perk of dealing with my HMO...Gotta stay within their system which sometimes means going to another city to a Kaiser that has the equipment to do more extensive testing. One of the things I hate about going to that appointment on Thursday is not being able to see all of the kids' award ceremonies. I almost called to reschedule, but I think I'd be helping my kids out more if I was taking care of myself to make sure I'm around a long time to see them grow up and have kids of their own.

Got some other medical issues I'm dealing with as well, but one thing at a time I guess. I'm 40 years old and I'm falling apart...lol

Friday, May 11, 2007

What If?

Today is not one of my better days. It's a struggle, even now, to keep my eyes open, to move around, to do anything at all. Of course this is nothing new as it has been this way for the past 8 years. Some days are better than others. I didn't go to sleep until 3:30 a.m. this morning and had to be up at 7 a.m., and when I woke up, I knew that I would more than likely need a nap. I took the kids to school and did my usual thing on the computer (check emails, sites I thought of visiting, etc.). I took my 137 mcg of levothyroxine,and when I was ready for my nap, I set the alarm on my phone to wake me as I usually do before napping. That way I don't have to change the alarm on my ihome clock radio that's set for school days. I fell asleep pretty quick and I started having weird dreams. I awoke from sleep and dreaming a little disoriented. I had wondered why my phone alarm had not gone off. At first I thought, oh no, I'm very late getting the girls to school....then I thought, wait a minute, is it Saturday? And do I have only a half hour to get my stepson to the ball field for his baseball game? I honestly could not remember what day it was and was out of sorts for at least 5 or 10 minutes. Finally, it came back to me. Today is Friday. I was supposed to be up an hour ago(10:30 a.m.) so that I could do errands because Friday's are the kids' early release day from school (1:30 p.m.) . I got ready hurriedly and did all the things I had to do before leaving in 15 minutes. I had just 1 hour and 15 minutes to run those errands. I was back before 1:15 p.m. All this time I wondered what would have happened if I didn't get up on time and the kids were home and couldn't get in the door? What if I were really late in getting them to school? What if it IS Saturday and I had a half hour to get to the ball field? Just a bunch of 'what ifs?'

Even after that 2 hour nap, I still did not feel rested. The kids were home and it was all I could do to stay awake. The kids decided to go to the park. I thought I would just go upstairs and rest in my bed. I ended up falling asleep for another hour and a half. When I get like this, I feel like I'm not as good of a parent as I should be. I SHOULD be able to stay awake and do things. I keep asking myself, why do I always have to be tired? Is one day of feeling 'normal' too much to ask. To be honest, at this moment, I STILL don't feel rested....I could sleep all day long if someone let me. But I can't...it's time to be a parent even when it's taking everything I got in me right now. By the way, the phone alarm didn't go off because, in my fatigue, I set it to 10:30 p.m.

Thursday, May 10, 2007

For those of you that have already visited my blog you know that I have been ranting on about my medical treatment or the lack thereof. My ramblings and whatnot became more rantings so I decided to devote a blog just to my life as a person dealing with Hashimoto's thyroiditis.

Hashimoto's thyroiditis is an autoimmune disease that was named after the Japanese doctor that discovered it. The suffix 'itis' means inflammation, therefore, thyroiditis is the inflammation of the thyroid and. In Hashimoto's thyroiditis, the immune system attacks the thyroid gland because it thinks it's a foreign object. Your thyroid then doesn't produce enough antibodies, hence, becoming hypothyroid. It begins to damage the thyroid causing a multitude of symptoms such as weight gain, fatigue, body aches, irregular menstrual cycles, brain fog, and many others.

My life with Hashi began eight years ago after the birth of my last child in 1999. I had gained weight rapidly and was tired all the time. It was almost like the first few months of pregnancy for me, as anywhere I laid down, I could or would fall asleep. My coworkers (at an old job) knew that I was tired all the time and blamed it on other things (but we won't go into those other things lol). Anyways, with our medical insurance we could get an extensive physical. I got labs done, eyes examined, etc. When I got back my results everything was 'normal' with the exception of a small heart murmur. He was the second doctor in my life to tell me I had that, and I had been told both times to have it checked out. Most doctors, when I tell them that story, tell me that they didn't hear it or if they did it was faint. I haven't gotten it checked out to this day, and I've had dental work without antibiotics and I'm still here. lol As months went on, I started suffering other symptoms like dry skin, my hair was falling out and not like the normal amount...excessive amounts, eat very little but still gain weight. The worse part is when the brain fog kicked in. My x swore I said something when I swore I didn't. People would say that I had just told them something. I was forgetting bits and pieces of conversations or things I've said so I was repeating them. I had trouble focusing on the most basic things, not being able to remember where I put things, and at times, I really thought I was going out of my mind. I also became almost 'comatose'. When I felt like that, I really could not function. I had three kids to take care of, so I forced myself to function. What scared me most, is that comatose feeling came at times when I was driving. I just wanted to close my eyes because they were so heavy. But I didn't. I just turned on the air conditioning, and forced myself out of that feeling. It was hard, but I knew that if something happened to the kids because of me, I would never forgive myself.

In 2002, my x and I had separated. I was still on his insurance as he could not take me off until the divorce was final. I decided to go to a specialist because a previous doctor, who had found a kidney stone after years being told I only had UTI's, suggested I come back to have thyroid tested. But because they stopped taking that insurance, I couldn't go back to her. Luckily, I had a PPO and could go straight to a specialist without a referral. This is where things started to change. I had all the thyroid tests done, and it was being sent for analysis. The doctor went ahead and put me on 50mcg of levothyroxine. When I went back for my follow up visit he told me that I had Hashimoto's. FINALLY!! a diagnosis....it was a relief.

I can tell you that just from the initial thyroid med dose I was feeling the difference. The doctor did up my dosage because of the labs. However, I did eventually lose the insurance and had to pay out of pocket. Because of that, I wasn't able to go when needed, but I was able to stay on that dosage of meds.

When Steve and I got married, and I moved out here in 2004, my symptoms that once dissipated a bit, were coming back...some even stronger than before. I started seeing the doctor here. Every time I have labs everything is 'normal', but luckily, I changed to a second doctor who increased my dosages. I would start feeling better in the beginning, but anyone with this disease knows that the 'right' dosage needs to be found. The dosages were only right for awhile and that's when my dosages would increase.

Current doctor says that once diagnosed with Hashi, that patients need to stay at 1.0-2.0. I am now at 1.3, I'm a bit better, but I STILL don't feel 'right'. I've joined thyroid forums and groups, and I've read up and they say for optimum results we should be at .02 or even .01. But what do you do when every doctor you find goes with the old school way of treating the thyroid...sticking to the lab values that are keeping you sick? It's no wonder many people go misdiagnosed or undiagnosed every year. Isn't it bad enough that millions of people suffer from it and don't know it? At least give us, who even suspect it could be our thyroids, a little credit.

Apture