Ok, so if you read my last note, you know that I was waiting on test results to tell me if my enlarged and poorly functioning thyroid was due to a genetic condition. Well, I went last Friday afternoon, and am very frustrated with what she had to say. (I had been really excitedly anticipating the appointment because I thought it would give me a feeling of resolution.) Instead of feeling like I have a piece of a resolution, or some sort of plan of action, I'm left with nothing.
First of all, the test results showed that my TSH was down to 4something now. That's good, because it's not ever supposed to be higher than 4 (the range is .4 to 4, and they want you to be like a 2), and I had started out this process at almost 8 (which is why I noticed all the typical hypothyroid symptoms--extreme sensitivity to cold, unexplained weight gain--like 20+ lbs, super fragile nails when mine had always been really strong, fatigue--like sleeping 12 hours a night and having no desire to do anything active, etc.) The fact that after one month of the Armour medication I had come down to 5something, and then another month had brought me down to 4something was good news. But, she said, not good enough. She switched me to Synthroid, and a higher dosage. (I have also noticed stronger nails and weight loss, in the last three weeks or so, but still suffer from fatigue.) She suggested that this one would be less irritating to my stomach and should kick my thyroid into gear enough to bring the TSH down to where they want it. So, that's good news. Kinda.
The other test result that was positive, er, negative, was no to diabetes. (Diabetes and hypothyroidism have some similar symptoms so she tested to make sure that wasn't a problem.) Thank God. Literally. Praise God that I don't have diabetes.
The third test result was testing my antibodies to see if I had the genetic Thyroid condition. It's called Hashimoto's disease for the hypothyroid end of the spectrum (and Grave's disease for the hyperthyroidism end). Well, they were negative. That seems like good news, right? I don't have the genetic disease causing my thyroid to enlarge, have nodules and stop working. HOWEVER, when I then asked her about other explanations she said "If it's not genetic, there's no way to determine what's causing your thyroid to under perform." I then asked if it could be related to a food allergy of some kind. (I had recently done tons of research about food allergies/intolerances/sensitivities/etc and had found lots of research tying them together.) I told her that I had found research to suggest that it could be a B12 deficiency or Iodine deficiency or something like a gluten intolerance. She looked me dead in the eye and said "you are not iodine deficient and if it's not the genetic disease, there's no way for anyone to tell what's causing it. You'll just need to take this pill every day for the rest of your life to make it function the way it's supposed to."
I wanted to scream! So, she basically told me that there's something pretty seriously wrong with me (if left unfixed, hypothyroidism can cause pretty serious problems), but that we don't know and will never know why it's gone wrong. I wanted to tell her that I thought she was full of **it, but I refrained. I was still in a lot of pain from another procedure I had done that morning (not material for public postings), so just wanted to go home.
The rest of the afternoon and weekend (and still am a little bit) I was furious. How can the medical profession (sorry Mitra and Sarah) only be concerned with fixing my symptoms? SOMETHING is causing my thyroid to not work correctly. I have flip-flopped between just being glad that I'm feeling better and thinking that taking a pill every morning isn't much of a price to pay for having strong nails again, etc. to just wanting to know why it isn't working right. If I fix the cause, I might not have to take the pill every day for the rest of my life. For example, if I have a gluten intolerance, my body could be so busy fighting the gluten I'm consuming that it can't keep up with getting my thyroid to work normally. Does that make sense? A food intolerance like that would also explain why I seem to feel just 'not well' more than normal people. I have headaches and weird muscle aches more than other people. It would also explain why I get sick more often and that when I do get sick it's often pretty bad. (I don't think I've ever had one of those colds where people have a drippy nose and can still function perfectly fine.) The theory is then, that if you eliminate whatever you are allergic to/have an intolerance to, your body will overall function better because it can stop fighting off that substance (like soy, corn, gluten, etc), and focus on fighting viruses and making itself function properly (i.e. my thyroid).
What surprised me is that Seth was even more mad than I was. He was such the protective husband! I had (and still have) a lot of restrictions based on the other procedure from Friday morning, so he was doing a great job of baby-ing me all weekend. And given the chance, he'd get on a soapbox about dr.s only wanting to fix the symptoms and not the cause and how he doesn't want me to give any more money to someone who wouldn't listen to me (I'm supposed to go back again in like a month for follow-up blood work and then another follow-up appointment to see if the TSH is continuing to respond positively--meaning going down.)
I'm thankful to have met someone here in Dallas who has recently gone through a similar enough experience that she's given me tons of research and her Dr.'s name, etc. (Thanks Lisa!) I appreciate everyone's thoughts/suggestions and prayers and general positive vibes. I promise to keep everyone informed of how the rest of the process plays out.
First of all, the test results showed that my TSH was down to 4something now. That's good, because it's not ever supposed to be higher than 4 (the range is .4 to 4, and they want you to be like a 2), and I had started out this process at almost 8 (which is why I noticed all the typical hypothyroid symptoms--extreme sensitivity to cold, unexplained weight gain--like 20+ lbs, super fragile nails when mine had always been really strong, fatigue--like sleeping 12 hours a night and having no desire to do anything active, etc.) The fact that after one month of the Armour medication I had come down to 5something, and then another month had brought me down to 4something was good news. But, she said, not good enough. She switched me to Synthroid, and a higher dosage. (I have also noticed stronger nails and weight loss, in the last three weeks or so, but still suffer from fatigue.) She suggested that this one would be less irritating to my stomach and should kick my thyroid into gear enough to bring the TSH down to where they want it. So, that's good news. Kinda.
The other test result that was positive, er, negative, was no to diabetes. (Diabetes and hypothyroidism have some similar symptoms so she tested to make sure that wasn't a problem.) Thank God. Literally. Praise God that I don't have diabetes.
The third test result was testing my antibodies to see if I had the genetic Thyroid condition. It's called Hashimoto's disease for the hypothyroid end of the spectrum (and Grave's disease for the hyperthyroidism end). Well, they were negative. That seems like good news, right? I don't have the genetic disease causing my thyroid to enlarge, have nodules and stop working. HOWEVER, when I then asked her about other explanations she said "If it's not genetic, there's no way to determine what's causing your thyroid to under perform." I then asked if it could be related to a food allergy of some kind. (I had recently done tons of research about food allergies/intolerances/sensitivities/etc and had found lots of research tying them together.) I told her that I had found research to suggest that it could be a B12 deficiency or Iodine deficiency or something like a gluten intolerance. She looked me dead in the eye and said "you are not iodine deficient and if it's not the genetic disease, there's no way for anyone to tell what's causing it. You'll just need to take this pill every day for the rest of your life to make it function the way it's supposed to."
I wanted to scream! So, she basically told me that there's something pretty seriously wrong with me (if left unfixed, hypothyroidism can cause pretty serious problems), but that we don't know and will never know why it's gone wrong. I wanted to tell her that I thought she was full of **it, but I refrained. I was still in a lot of pain from another procedure I had done that morning (not material for public postings), so just wanted to go home.
The rest of the afternoon and weekend (and still am a little bit) I was furious. How can the medical profession (sorry Mitra and Sarah) only be concerned with fixing my symptoms? SOMETHING is causing my thyroid to not work correctly. I have flip-flopped between just being glad that I'm feeling better and thinking that taking a pill every morning isn't much of a price to pay for having strong nails again, etc. to just wanting to know why it isn't working right. If I fix the cause, I might not have to take the pill every day for the rest of my life. For example, if I have a gluten intolerance, my body could be so busy fighting the gluten I'm consuming that it can't keep up with getting my thyroid to work normally. Does that make sense? A food intolerance like that would also explain why I seem to feel just 'not well' more than normal people. I have headaches and weird muscle aches more than other people. It would also explain why I get sick more often and that when I do get sick it's often pretty bad. (I don't think I've ever had one of those colds where people have a drippy nose and can still function perfectly fine.) The theory is then, that if you eliminate whatever you are allergic to/have an intolerance to, your body will overall function better because it can stop fighting off that substance (like soy, corn, gluten, etc), and focus on fighting viruses and making itself function properly (i.e. my thyroid).
What surprised me is that Seth was even more mad than I was. He was such the protective husband! I had (and still have) a lot of restrictions based on the other procedure from Friday morning, so he was doing a great job of baby-ing me all weekend. And given the chance, he'd get on a soapbox about dr.s only wanting to fix the symptoms and not the cause and how he doesn't want me to give any more money to someone who wouldn't listen to me (I'm supposed to go back again in like a month for follow-up blood work and then another follow-up appointment to see if the TSH is continuing to respond positively--meaning going down.)
I'm thankful to have met someone here in Dallas who has recently gone through a similar enough experience that she's given me tons of research and her Dr.'s name, etc. (Thanks Lisa!) I appreciate everyone's thoughts/suggestions and prayers and general positive vibes. I promise to keep everyone informed of how the rest of the process plays out.