I haven’t written anything in a while because things have been overwhelming for me lately. Actually, I’m making this a dual post because I just don’t have the energy to do this twice. Brace yourself because this might be a long one.
This last month has been really crappy. My grandpa died and while I wasn’t as close to him as I would’ve liked to have been, it was still upsetting and stressful and I’m glad all that drama is over. Then there’s all the stress of being broke as hell and on the verge of getting behind on bills because of all the unpaid days off Keith’s had and now Keith will probably be laid off by the end of the month. I’m so sick of crunching numbers and doing calculations trying to figure out how to stay afloat.
In the midst of all that, I’ve been trying to improve my health and I thought I was doing okay for a while until the weight just stopped coming off. The stress probably didn’t help, but I persevered and when I got nowhere after four weeks even after decreasing my calorie intake, I went to the doctor. I remember a thyroid test I’d had done over a year ago that showed I was borderline high so I figured I’d get it checked again.
Before I left, the doctor made mention of my blood pressure reading, which I believe was 150/100 or something and so I was put on blood pressure pills. I’d had it checked several times before and it was like in the 140/100 range so it had been high for a little while. But I really hate going to the doctor for one problem and walking out feeling totally unsatisfied, like they didn’t listen to me at all, with a diagnosis of something completely unrelated. This is one major reason I don’t like doctors very much. The blood pressure meds actually pissed me off a little bit because I feel like if the diet and exercise had been working like it’s supposed to and I could lose a few pounds, I wouldn’t need the pills to begin with.
I kind of expected to get blown off again because that’s what happened last time. The doctor last time determined that my TSH level of 4.65 was in his “normal range” of anything less than 4.78. But after some research, I realized that the AACE’s guidelines for diagnosing hypothyroidism changed way back in 2002 to anything above 3.0, which puts me clearly above the mark. So I decided to press the issue this time and basically got told “we’ll see what your tests say, but if they’re normal, it’s up to the endocrinologist” whether or not I should be treated.
Luckily, she ran a more comprehensive batch of tests this time (although not comprehensive enough I know now) and found that my free T4 was low and I’m still very anemic. So I was referred to a hematologist for the anemia and put on levothyroxine and told to come back in two months to have my levels checked again. I thought great, maybe now I’ll get somewhere!
I’m not usually one of those “jump to conclusions” kind of people. I prefer to get the facts and do the research and base a decision on that rather than incredibly unreliable feelings and instinct. But the more I read about hypothyroidism, the more light bulbs are going off in my head like wow, could that have been the problem? Perhaps I’m oversimplifying things and this is just the easier answer to all those questions at this particular moment, but for now, I’m going with it.
I have epilepsy as well and have been taking Tegretol for about 17 years. In my digging, I realized that Tegretol is a thyroid suppressor. I’m not clear yet on exactly how it screws up your thyroid or if not taking the Tegretol would reverse its effects, but it is certainly a contributing factor. Along with all the other reasons Tegretol is a bad idea, i.e. it’s probably causing my anemia (or at least contributing to it), I’m probably going to get osteoporosis by the time I’m 40 because it prevents calcium absorption, and as long as I’ve been on it, it will probably destroy my liver, among other things, I probably shouldn’t be taking it at all. But I’ve tried switching to something else and it was a nightmare I don’t wish to repeat.
And apparently I’m just a walking drug interaction. Tegretol decreases the effectiveness of the levothyroxine (as well as a whole host of other things like acetaminophen, which explains why Tylenol never does anything for me) and the levothyroxine decreases the effectiveness of the metoprolol (blood pressure pill I’m taking). The levothyroxine is a giant pain in the ass anyway because you can’t take it anywhere near certain vitamin supplements like calcium or iron or food of any kind because it binds to it and prevents absorption. So as if I wasn’t having a hard enough time getting enough iron and calcium, it’s now probably worse.
Anyway, I’m going off on a rant here and I didn’t want to turn this into “My Journey”, The Novel. There’s a whole ton more information I have come across that I’m sure I’m skipping over but I feel like I have to mention something about the boys and how this all could be related to their autism. Now before you close the browser and determine “Oh my God, she’s lost it”, hear me out. Obviously I’m not a doctor and I don’t have any proof, just those unreliable gut feelings, but I’ve read too many hypotheses now about the link between hypothyroidism in pregnancy and autism or developmental delays. Clearly, this information is in its infancy so it obviously couldn’t have benefited me at the time I was pregnant, but it deeply saddens me to think that if this contributed in any way, it could have been prevented so easily.
For years, doctors have known about the proven link between uncontrolled or undiagnosed, even subclinical (meaning not bad enough to need treatment), thyroid problems in a pregnant woman and problems with fetal brain development and cognitive functioning, among other things. Basically, they knew it could cause mental retardation. It wasn’t until the recent autism “epidemic” that someone finally zeroed in on the drastic rise in hypothyroidism as well and wondered if they could be linked somehow. To quote an article I found at Developmental Delay Resources (DDR):
They are only now recognizing, however, that mild to moderate impairment of thyroid function in a pregnant mother may adversely affect brain development, as well as cause subtle to severe intellectual and behavioral abnormalities, such as learning disabilities, attention deficits and possibly certain pervasive developmental disorders such as autism.
Being that I have two children with autism, could this have been a contributing reason, not just bad luck or bad genes? I’m sure there were many factors involved, but I firmly believe looking back now that this could have been one of them. If I could convince my doctor to do some additional tests on me (or find a doctor who will), I think I could nail this answer down, at least in my mind. If it turns out I have thyroid antibodies, that indicates Hashimoto’s Disease, which is an autoimmune disease that I probably had years ago and it’s just now getting bad enough to cause more symptoms. Hashimoto’s also more commonly runs in families and I just found out my mother is on thyroid medicine too, which I didn’t even know (she never tells me anything). That doesn’t necessarily mean that’s what she has but it’s enough for me to want to have more tests done.
A great source of information I’ve found was actually given to me by my sister Lindsey. She helps run The People Speak Radio and they recently had a show with patient advocate Mary Shomon all about hypothyroidism. After listening, I immediately went out and bought one of her books, Living with Hypothyroidism, which is fabulous and a great source of information especially for the newly diagnosed, and have been thoroughly reading her site at Thyroid-Info.com and a site she contributes to on About.com. I also found a teleconference she did about your thyroid and weight loss. Those sites have a wealth of information in them and I highly recommend them.
Needless to say, all of this information is overwhelming and honestly quite depressing. It seems the more I search, the more I find wrong with me. I just want to feel okay again and not have constant heart palpitations and dry skin and swollen feet. I just want to be able to sleep and not be tired all the time. For the longest time, I just thought that was due to the anemia or being fat, but now I’m not so sure.
There’s so much information here I’m skipping, but I’m tired of typing and thinking about all of this so I’ll have to elaborate on that later. I just want a doctor to listen to me and figure out how to make it all better, but that’s probably expecting too much.
