clevermanka (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
clevermanka) wrote2011-03-24 02:25 pm
clevermanka) wrote2011-03-24 02:25 pm
Entry tags:
What I've got
Let's start with what I don't have. I don't have leaky gut syndrome. I am also not allergic to eggs. Yay!
So, now that's out of the way, let's move on to what I do have.
Hashimoto's Disease. It turns out I don't actually have hypothyroidism. That's just what I was treated for. Because standard western medicine doesn't feel like investing the time and effort into treating Hashimoto's as what it is (an autoimmune disorder), and there's no money in it for the drug companies, it gets lumped in with hypothyroidism and treated with such. This, even though the treatment for hypothyroidism eventually makes the problem worse and worse. Even the Mayo clinic says "Treatment of Hashimoto's disease with thyroid hormone replacement usually is simple and effective." Which is total B.S. It isn't simple, and it isn't effective. In fact, the Armour thyroid hormone I've been taking is possibly the worst thing, because my body sees the natural hormone and starts attacking it--whereas its response to the synthetic hormone wouldn't be as drastic. I'll be going back to the Levothyroxine (preferable to Synthroid because Synthroid has a corn starch base) immediately. Even though I won't feel like the drugs are doing any good, the supplemental hormones will at least protect my pituitary gland from sending out signals for more TSH all the time--and thus, will protect my brain from possible (more) neurological problems. A high count of neutrofils and a low count of lymphocytes are indicators of a stressed and overworked immune system--the result of an autoimmune issue (Hashimoto's) that's gone untreated for some time. The final deciding factor of this diagnosis was the fact that my thyroid antibodies, which should show in the 0 to 20 range, were an indisputably high 323. So it's most definitely my thyroid that's being attacked, rather than my joints, skin, kidneys, etc.
H. Pylori, Blastocystis hominis, and Entamoeba infections. I also have a non-human parasite present in my intestines, which was non-diagnosable but will hopefully be wiped out with the treatment for the other infections. Because of the numerous infections, my good gut bacteria have pretty much rolled over and died. My CFU (colony forming unit) per gram are mostly below the 50th percentile of normal gut flora population. Particularly low are my Bifidobacteria, which are at 1.8 when they should be around 7.5. The bacteria issues are one gut problem. The other is:
Hypochloridia. I can't find a good link for this, but basically, my stomach isn't producing enough hydrochloric acid to digest my food. Hence, food goes undigested into my intestines, where the intestines can't get nutrients out of it because it's not broken down enough, and everything passes through my system without my gaining much (if any) nutritional benefit from it. This means while I am not starving, I am malnourished. Judging from the fact that I've had gut issues since 2003, it's likely that I'm severely malnourished.
Food intolerances for gluten, casein, and soy. These are off the menu, permanently. I have the gene for Celiac disease, but it hasn't been turned on--yet. Continued exposure to gluten would trigger that switch, and there's no knowing when or what would be the limit. It could be the next time I ate a doughnut, so it's best to just avoid it altogether. I have no problems avoiding soy. Soy lecithin is okay because it's broken down so much and it's in such small amounts that the body just ignores it. I shall miss not having the option of the rare indulgence of cow cheese or real ice cream. Not that I've had either for almost a year now, but it was nice to think I could if I wanted.
Adrenal Fatigue. This is why I have to give up caffeine. My cortisol load is 64 (I'm unsure of the unit of measure) and the normal load is 23-42. The basic problem of the overload is exacerbated by the fact that my circadian cortisol profile is exactly opposite what it should be. When my cortisol should be the highest (morning), I'm at my lowest production rate. And when cortisol levels should be decreasing (around noon), mine are rising, with a peak around 4:00 pm. Then I have a pretty dramatic decrease (from a count of 27 to a count of 9) between 5:00 and 10:00 pm. This explains why when I get tired at night, I crash fast and hard. Associated with the adrenal fatigue are depressed progesterone levels (20 pg/ml when the optimal level is between 22 and 100) and depressed SIgA levels (less than 5 mg/dl when normal is 25 to 60). SIgA helps immune function, toxin neutralization, and inhibits (bad) bacterial colonization.
Estrogen/Progesterone imbalances. I have a short cycle (that part was not news to me). Because of the shortened cycle, my estrogen levels peak early. And because my progesterone levels are so low, they do not balance well. There's a great sentence in the diagnosis printout that says "Estradiol Peak is Not in the Acceptable Time Frame." Take that, estrogen peak! This imbalance is likely what causes the painful, heavy bleeding and the accompanying headaches, etc. It can also cause double ovulation (yay, tubal ligation!). This is the least of my worries. If I have to deal with only one of these issues, I'll take the nasty periods, thanks.
So that's the diagnosis. I'm trying to figure out what to do in regards to treatment. Yesterday I was all gung-ho about plunking down the Sixty-eight hundred dollars to pursue the offer of Dr. Pickel's care. But today has thrown a curveball and I'm not sure how I feel about it.
This morning, I met with Dr. Burt, my PCP, and was talked with him about these lab results and Dr. Pickel's analysis/suggestions. He was hesitant about a lot of it (he hadn't heard of some of the labs that did the analysis and was unfamiliar with Alinia, the drug recommended by Dr. Pickel for the bacterial infections. He agreed that it was worth my giving it a shot, though, and so wrote the prescription.
I took the prescription to Walgreen's, where I discovered that my cost for fourteen days of Alinia would be $327 and change. I called Dr. Pickel's office in a bit of a panic, because I simply can't afford this. He apologized and said he knew it was expensive, and that some of his patients had had better luck finding it cheaper through Sam's or CostCo. I told him I didn't have a membership to either of those, neither were in Lawrence, and I would have very much appreciated his telling me this information before I left his office yesterday, and before I took that outrageously expensive prescription request to my doctor (with the accompanying sick time and $25 co-pay).
By itself, this wouldn't have been such a irritation, but he also neglected to tell me at the last visit that his patients had experienced problems with some LabCorp facilities not taking Blue Cross/Blue Shield insurance--which is what happened with me and I drove to Lenexa (while fasting!) one morning, only to have to drive all the way back to Lawrence to have the test done at good old LMH. He apologized for not remembering to mention the potential issues with LabCorp.
But now he again forgot to mention the expense of this medication. What else is he going to forget to tell me? Those two experiences make me nervous, and honestly, a bit uninterested in forking over to him my entire savings account and then some.
I don't know what to do now, and I'm sad and frustrated and frightened. I'm also getting ready for another nasty period (due to start in 3..2..1..), so that's not helping my emotional stability. Yesterday I was a bit shocked over the information and price of treatment, but I was so relieved that someone looked like he knew what he was talking about had a course of action for me and was going to tell me what to do. I'm just done with self-diagnosis and self-experimentation, and I just want someone to tell me what to do already. I want it to be someone I trust, though, and today I don't trust anyone.
All this information and nowhere to go with it.
So, now that's out of the way, let's move on to what I do have.
Hashimoto's Disease. It turns out I don't actually have hypothyroidism. That's just what I was treated for. Because standard western medicine doesn't feel like investing the time and effort into treating Hashimoto's as what it is (an autoimmune disorder), and there's no money in it for the drug companies, it gets lumped in with hypothyroidism and treated with such. This, even though the treatment for hypothyroidism eventually makes the problem worse and worse. Even the Mayo clinic says "Treatment of Hashimoto's disease with thyroid hormone replacement usually is simple and effective." Which is total B.S. It isn't simple, and it isn't effective. In fact, the Armour thyroid hormone I've been taking is possibly the worst thing, because my body sees the natural hormone and starts attacking it--whereas its response to the synthetic hormone wouldn't be as drastic. I'll be going back to the Levothyroxine (preferable to Synthroid because Synthroid has a corn starch base) immediately. Even though I won't feel like the drugs are doing any good, the supplemental hormones will at least protect my pituitary gland from sending out signals for more TSH all the time--and thus, will protect my brain from possible (more) neurological problems. A high count of neutrofils and a low count of lymphocytes are indicators of a stressed and overworked immune system--the result of an autoimmune issue (Hashimoto's) that's gone untreated for some time. The final deciding factor of this diagnosis was the fact that my thyroid antibodies, which should show in the 0 to 20 range, were an indisputably high 323. So it's most definitely my thyroid that's being attacked, rather than my joints, skin, kidneys, etc.
H. Pylori, Blastocystis hominis, and Entamoeba infections. I also have a non-human parasite present in my intestines, which was non-diagnosable but will hopefully be wiped out with the treatment for the other infections. Because of the numerous infections, my good gut bacteria have pretty much rolled over and died. My CFU (colony forming unit) per gram are mostly below the 50th percentile of normal gut flora population. Particularly low are my Bifidobacteria, which are at 1.8 when they should be around 7.5. The bacteria issues are one gut problem. The other is:
Hypochloridia. I can't find a good link for this, but basically, my stomach isn't producing enough hydrochloric acid to digest my food. Hence, food goes undigested into my intestines, where the intestines can't get nutrients out of it because it's not broken down enough, and everything passes through my system without my gaining much (if any) nutritional benefit from it. This means while I am not starving, I am malnourished. Judging from the fact that I've had gut issues since 2003, it's likely that I'm severely malnourished.
Food intolerances for gluten, casein, and soy. These are off the menu, permanently. I have the gene for Celiac disease, but it hasn't been turned on--yet. Continued exposure to gluten would trigger that switch, and there's no knowing when or what would be the limit. It could be the next time I ate a doughnut, so it's best to just avoid it altogether. I have no problems avoiding soy. Soy lecithin is okay because it's broken down so much and it's in such small amounts that the body just ignores it. I shall miss not having the option of the rare indulgence of cow cheese or real ice cream. Not that I've had either for almost a year now, but it was nice to think I could if I wanted.
Adrenal Fatigue. This is why I have to give up caffeine. My cortisol load is 64 (I'm unsure of the unit of measure) and the normal load is 23-42. The basic problem of the overload is exacerbated by the fact that my circadian cortisol profile is exactly opposite what it should be. When my cortisol should be the highest (morning), I'm at my lowest production rate. And when cortisol levels should be decreasing (around noon), mine are rising, with a peak around 4:00 pm. Then I have a pretty dramatic decrease (from a count of 27 to a count of 9) between 5:00 and 10:00 pm. This explains why when I get tired at night, I crash fast and hard. Associated with the adrenal fatigue are depressed progesterone levels (20 pg/ml when the optimal level is between 22 and 100) and depressed SIgA levels (less than 5 mg/dl when normal is 25 to 60). SIgA helps immune function, toxin neutralization, and inhibits (bad) bacterial colonization.
Estrogen/Progesterone imbalances. I have a short cycle (that part was not news to me). Because of the shortened cycle, my estrogen levels peak early. And because my progesterone levels are so low, they do not balance well. There's a great sentence in the diagnosis printout that says "Estradiol Peak is Not in the Acceptable Time Frame." Take that, estrogen peak! This imbalance is likely what causes the painful, heavy bleeding and the accompanying headaches, etc. It can also cause double ovulation (yay, tubal ligation!). This is the least of my worries. If I have to deal with only one of these issues, I'll take the nasty periods, thanks.
So that's the diagnosis. I'm trying to figure out what to do in regards to treatment. Yesterday I was all gung-ho about plunking down the Sixty-eight hundred dollars to pursue the offer of Dr. Pickel's care. But today has thrown a curveball and I'm not sure how I feel about it.
This morning, I met with Dr. Burt, my PCP, and was talked with him about these lab results and Dr. Pickel's analysis/suggestions. He was hesitant about a lot of it (he hadn't heard of some of the labs that did the analysis and was unfamiliar with Alinia, the drug recommended by Dr. Pickel for the bacterial infections. He agreed that it was worth my giving it a shot, though, and so wrote the prescription.
I took the prescription to Walgreen's, where I discovered that my cost for fourteen days of Alinia would be $327 and change. I called Dr. Pickel's office in a bit of a panic, because I simply can't afford this. He apologized and said he knew it was expensive, and that some of his patients had had better luck finding it cheaper through Sam's or CostCo. I told him I didn't have a membership to either of those, neither were in Lawrence, and I would have very much appreciated his telling me this information before I left his office yesterday, and before I took that outrageously expensive prescription request to my doctor (with the accompanying sick time and $25 co-pay).
By itself, this wouldn't have been such a irritation, but he also neglected to tell me at the last visit that his patients had experienced problems with some LabCorp facilities not taking Blue Cross/Blue Shield insurance--which is what happened with me and I drove to Lenexa (while fasting!) one morning, only to have to drive all the way back to Lawrence to have the test done at good old LMH. He apologized for not remembering to mention the potential issues with LabCorp.
But now he again forgot to mention the expense of this medication. What else is he going to forget to tell me? Those two experiences make me nervous, and honestly, a bit uninterested in forking over to him my entire savings account and then some.
I don't know what to do now, and I'm sad and frustrated and frightened. I'm also getting ready for another nasty period (due to start in 3..2..1..), so that's not helping my emotional stability. Yesterday I was a bit shocked over the information and price of treatment, but I was so relieved that someone looked like he knew what he was talking about had a course of action for me and was going to tell me what to do. I'm just done with self-diagnosis and self-experimentation, and I just want someone to tell me what to do already. I want it to be someone I trust, though, and today I don't trust anyone.
All this information and nowhere to go with it.