It's been awhile since I've blogged/blabbed about this and wanted to update everyone on how things were progressing and what I've learned since. That, and perhaps while helping others it'll also serve as a journal of my symptoms, in a way.
May: I started on 25 mcg of Synthroid. Almost immediately I felt awesome, like I had a caffeine infusion all day long that everyone jokes about wishing they had. It was scary how awesome I felt. I noticed I had more energy all day long, even as I was getting ready for bed. My motivation to work on things increased, probably in combination with the good weather and having more time because husband and kids were not in school and we had fewer obligations to go places, etc. My overall mood seemed to improve, and aside from the usual PMS symptoms around my period, my irritation at things seemed to subside.
May 30: We traveled to visit family for a few days. I noticed how I was waking early in the mornings, not being able to fall back to sleep. I noticed overall how I needed less sleep and felt great in the morning, like I didn't even need coffee. Before Synthroid, I was sluggish in the morning, sometimes even after coffee, and felt like it was an impossible task just to wake up in the morning. Now it was like the crack high I'd never experienced.
June 20: Gradually I noticed being more tired in the evenings and definitely ready for bed, sleeping well and being near exhausted by the time bedtime rolled around. I figured I was so tired at night because I had done so much during the day, or felt like a ball of energy that finally gave way at the end of the day. We had gone to an area state park and hiked, and I felt like I could hike more easily without getting too tired or experiencing shortness of breath, something I'd felt (even while doing nothing) before the Synthroid was started.
Mid July: I am definitely noticing a tapering off of effectiveness with the medication. I won't say the meds have stopped working, but I definitely need to be re-evaluated. I still have energy, but am finding it harder to wake up in the mornings again. Earlier I had decreased my food intake and lost a few pounds, and while my diet isn't perfect, I've managed to gain some weight back as time has progressed, unfortunately, even while attempting to eat less. I'm wondering how much of that is fluid. One day I decided to take 1 1/2 pills instead and had enough energy to hike and do a more strenuous workout at the pool - it was like feeling like I could move a barge. However, I was exhausted that night but still had trouble 'coming down' from the medication to fall asleep.
July 18: I had bloodwork and visited the doctor. I explained my symptoms and how they were recurring; he thinks the shortness of breath is from 'anxiety.' I have no anxiety. All I know is that it disappeared after I started Synthroid in the beginning and is now returning. I am also extremely irritable about almost everything. He upped my dose - after telling me that my still-within-normal-range TSH levels are decreasing - and after four days on the meds, I feel no better. On Friday I requested that they order a Reverse T3 test - which determines if I have trouble converting the inactive hormone to the active, 'energy' hormone - and he said nothing about those results, so I'm going to have them faxed to me instead. I've still been exercising and eating less, but don't feel any different - although I know it's only been about 10 days I'm getting discouraged. It's miserably hot here and I wonder if the heat and humidity are making me feel so sluggish.
He also wrote a script for more bloodwork (to be done later) and an ultrasound of my neck, which should be interesting.
I'm not sure what my next course of action should be - if I need T3 in addition to T4, I do not want to be on two expensive meds; I'd rather take Armour, which is cheaper and has both in it. The next step would be finding someone willing to prescribe it, which will probably not be an easy task.
Recent Posts
Friday, July 22, 2011
Thursday, July 21, 2011
Your thyroid and infertility
Posted by
The Deranged Housewife
If you're suffering from infertility, you have probably undergone many tests to find out why. But have you had your thyroid checked? (I mean, really checked?)
As a thyroid patient, I am amazed at how many underlying conditions improper thyroid hormone levels can cause, including infertility. And when I ask people "Have you had your thyroid checked?" they usually say "Yes." But then they aren't sure what tests they had, or what the results were, other than "normal."
I've also learned how under-educated many physicians are about properly recognizing and treating thyroid symptoms, and how many people differently interpret lab results. They use the word "normal" a lot, even though, really, everyone's definition of normal is different, and for many reasons. Many websites don't even mention thyroid problems as a cause for infertility, which concerns me: if they don't say anything about it, will your doctor?
Infertility problems are apparently very common among our population - and guess what? So are thyroid problems. I find it very hard to believe that so many women are infertile "just because." Many women don't even know they have it, and probably would never suspect it's a cause of why they can't get pregnant or can't carry a pregnancy to term.
When testing you for thyroid dysfunction, many doctors simply order one or two tests, usually a TSH (thyroid stimulating hormone). There is a wide range of normal, and it varies from lab to lab. If you fall somewhere in the "normal" range, that's usually as far as many physicians get. You might have other underlying symptoms that seem normal to you (or none at all, other than you can't get pregnant). It's really important, though, to have a complete panel with more extensive bloodwork done to look at individual hormone levels, rather than just the "big picture" (which sometimes gives a misleading result).
After Googling some fertility clinics and the blood workups they typically order, many will routinely order the TSH, free T3 and T4. That might be enough and it might not be. I have normal TSH and T3/T4 levels, but I still have hypo symptoms because my antibodies are high, which points to Hashimoto's, an autoimmune precursor that slowly destroys the thyroid gland. But your bloodwork (at least the few tests they did) comes back normal - could Hashi's be the cause? Yes!
Because of misleading TSH results, many patients go virtually untreated for hypothyroidism for years, which can result in an accumulation of symptoms and damage to the thyroid gland. Some people are hypo and don't even know it.
For some women, hypothyroidism can impair fertility because it interferes with ovulation. While it's recommended for women to get a complete bloodwork panel done, I wonder how many doctors turn to this first before recommending invasive procedures like IVF or a round of fertility drugs.
Hypothyroidism can also cause menstrual irregularities in some women, which can create whacked out fertility cycles when trying to get pregnant. Scant or very heavy periods are often clues that something is wrong with the thyroid. My grandmother has been on thyroid medication for years, and I only just realized that her extremely heavy periods - which resulted in a hysterectomy at age 40 - were probably from improperly treated hypothyroidism.
Hyperthyroidism - when the thyroid produces too much hormone - can also cause infertility by inhibiting ovulation. It can also produce light periods, which make it harder to track your cycles and conceive. In some women, thyroid problems can cause PCOS, which also inhibits conception. It can also cause repeated miscarriages in many women as well.
If you have had bloodwork done for thyroid and are still having problems getting pregnant, go over your results. Ask what specific tests were done and ask to see the results on paper so you have them for your records. Knowing what tests to ask for - and what they mean - can be the difference between struggling through invasive procedures for months, if not years, and having a baby.
More reading:
Hypothyroidism and Infertility: How thyroid problems can challenge your fertility
PCOS and Thyroid Disorders - What's the connection?
As a thyroid patient, I am amazed at how many underlying conditions improper thyroid hormone levels can cause, including infertility. And when I ask people "Have you had your thyroid checked?" they usually say "Yes." But then they aren't sure what tests they had, or what the results were, other than "normal."
I've also learned how under-educated many physicians are about properly recognizing and treating thyroid symptoms, and how many people differently interpret lab results. They use the word "normal" a lot, even though, really, everyone's definition of normal is different, and for many reasons. Many websites don't even mention thyroid problems as a cause for infertility, which concerns me: if they don't say anything about it, will your doctor?
Infertility problems are apparently very common among our population - and guess what? So are thyroid problems. I find it very hard to believe that so many women are infertile "just because." Many women don't even know they have it, and probably would never suspect it's a cause of why they can't get pregnant or can't carry a pregnancy to term.
When testing you for thyroid dysfunction, many doctors simply order one or two tests, usually a TSH (thyroid stimulating hormone). There is a wide range of normal, and it varies from lab to lab. If you fall somewhere in the "normal" range, that's usually as far as many physicians get. You might have other underlying symptoms that seem normal to you (or none at all, other than you can't get pregnant). It's really important, though, to have a complete panel with more extensive bloodwork done to look at individual hormone levels, rather than just the "big picture" (which sometimes gives a misleading result).
After Googling some fertility clinics and the blood workups they typically order, many will routinely order the TSH, free T3 and T4. That might be enough and it might not be. I have normal TSH and T3/T4 levels, but I still have hypo symptoms because my antibodies are high, which points to Hashimoto's, an autoimmune precursor that slowly destroys the thyroid gland. But your bloodwork (at least the few tests they did) comes back normal - could Hashi's be the cause? Yes!
Because of misleading TSH results, many patients go virtually untreated for hypothyroidism for years, which can result in an accumulation of symptoms and damage to the thyroid gland. Some people are hypo and don't even know it.
For some women, hypothyroidism can impair fertility because it interferes with ovulation. While it's recommended for women to get a complete bloodwork panel done, I wonder how many doctors turn to this first before recommending invasive procedures like IVF or a round of fertility drugs.
Hypothyroidism can also cause menstrual irregularities in some women, which can create whacked out fertility cycles when trying to get pregnant. Scant or very heavy periods are often clues that something is wrong with the thyroid. My grandmother has been on thyroid medication for years, and I only just realized that her extremely heavy periods - which resulted in a hysterectomy at age 40 - were probably from improperly treated hypothyroidism.
Hyperthyroidism - when the thyroid produces too much hormone - can also cause infertility by inhibiting ovulation. It can also produce light periods, which make it harder to track your cycles and conceive. In some women, thyroid problems can cause PCOS, which also inhibits conception. It can also cause repeated miscarriages in many women as well.
If you have had bloodwork done for thyroid and are still having problems getting pregnant, go over your results. Ask what specific tests were done and ask to see the results on paper so you have them for your records. Knowing what tests to ask for - and what they mean - can be the difference between struggling through invasive procedures for months, if not years, and having a baby.
More reading:
Hypothyroidism and Infertility: How thyroid problems can challenge your fertility
PCOS and Thyroid Disorders - What's the connection?
Tuesday, July 19, 2011
Always the pessimist
Posted by
The Deranged Housewife
"We HAVE to do this stuff to you because you just MIGHT die during childbirth. It's VERY dangerous, you know!" |
I've decided that in obstetrics - really, in most medical fields - our doctors are often very pessimistic. Classic examples include:
• "Well, your baby might get too big, so we'd better induce now." I didn't know that ultrasound machine was also doing double duty as a crystal ball!
• "You will not be able to birth a baby over 8 pounds." Really? How do you know? As our mothers always told us, "You never know until you try."
• "If you attempt a VBAC, you just might have to have a cesarean anyway." What a vote of confidence. When "attempting" a VBAC, women need to know accurate statistics so they can mentally prepare themselves, because nothing shoots down your plans more than being told there is a such-and-such rate of "failure." Just the way they word it, it makes it sound like few women are lucky to succeed (probably because few women are even allowed to) and the rest spontaneously explode. Technically, I had one failed VBAC attempt, because my baby was in an unfavorable position upon delivery - BUT I labored well and without pain medication on my own up until being prepped for surgery.
• "You better supplement with formula, just in case." Someone might have told you your nipples were too big, too small, or that "You'll never..." this that and the other just based on your physical appearance, which is obviously a load of garbage. Just because a certain percentage of women come in to their hospital and then don't nurse doesn't mean you won't - and who would want to with breastfeeding "support" like that?!
• "You should get the epidural since you'll never be able to have a baby without one." Again, that old "You never know until you try" adage. If more women knew how to cope with labor pain, and that many hospital policies actually make your pain greater, they might think differently about it. And if you're a first-time mom (and even if you aren't), you might find that it's really not as painful as everyone made it out to be.
• You're considered high-risk just because you're 35. Never mind if you are healthy, active, don't smoke or drink and are in excellent shape. Just your age can mean - gasp! - that you're perceived as broken and treated like you'll never, ever get pregnant or that it will take you years. Once you reach that "magic" age you'll probably be bullied into more and more invasive tests (I know I was) even though you are healthy and have no other problems. Sure, certain risk factors increase with age, but that doesn't mean it's a given. Certain procedures such as amniocentesis carry more immediate risks to the baby than just having the baby already, so many women might be better off forgoing it altogether - but that's your decision.
Speaking of which, I recently read about "Kate Middleton's pregnancy plans" now that she and Prince William were married. The doctor basically says that they're not getting any younger, and now is the "perfect time" to start a family since she is approaching her 30s. He then went on to outline the "possibilities" of what can happen if women wait too long to get pregnant, including old eggs and lack of cervical fluid.
We don't know what Kate's "pregnancy plan" is or even if she has one. Technically speaking, it's none of our business. Who knows - she might have three sets of triplets before she turns 35. Who cares?!
• "Birth is the most dangerous thing a woman can do and is like an accident waiting to happen!" This is sort of the all-encompassing thought process of the majority of OBs. Do we walk around in a body cast just in case we get in an accident? No. How about driving in cars, going to the mailbox to check our mail, just living our lives? We do that every day - no problem. If a problem arises, monitor it and if necessary, treat it - but otherwise leave me alone. More interventions to head off potential "problems" often only end up creating more problems in the end!
You may have risk factors, but does that mean it's going to happen? Should you be treated like it's already happening even when it isn't? Nope!
And if it were really as dangerous as they say, then where are all these babies coming from?
More reading:
"Childbirth is one of the most dangerous things a woman can do today" - My OB Said What?!
Mama Birth: Your care provider is psychic!
A Better Beginning with Natural Childbirth: Munchausen Obstetrics (scroll down)
Monday, July 18, 2011
Seeing dollar $igns
Posted by
The Deranged Housewife
With all this talk about President Obama raising the "debt ceiling," you have to wonder where the spending cuts are being made (or if they're being made). Politics aside, I can't help but think of one way the government could definitely save money: reduce the cesarean rate.
It's estimated that the US could save $3.5 billion a year in healthcare costs if the number of medically unnecessary cesareans were reduced. I don't know if that's just for the surgery alone, so perhaps the figure is much higher when you account for everything that takes place up to the cesarean. Think about the way a typical birth unfolds in the US:
• Mom is approaching 39 weeks in an otherwise normal pregnancy. Since her doctor is telling her it's "dangerous" to go past her due date, she decides to go ahead with an induction. After numerous doses of Cervidil and Pitocin, her labor finally starts, but is slow and very painful. Perhaps pain relief from the epidural is spotty, or they just need to keep giving her boluses because her labor is so long. They finally agree to do a cesarean for fetal distress. After birth, they decide the newborn must spend time in the NICU because her dates were off and the baby is showing signs of prematurity. He spends a week in the NICU and then goes home. Oh, did we mention this mom was giving birth in a military hospital?
• The mother has already had a prior cesarean, and is scheduled to have another "elective" repeat cesarean.
(This is just based on some of the stories I hear from mothers. While it obviously doesn't always go this way, it's not that uncommon, either.)
While it's been said that Medicaid won't pay for unnecessary cesareans, I'm sure they can find other reasons to do them. When you don't even know what constitutes "necessary" anymore, it's probably not all that hard.
As of 2009, certain states were working hard to eliminate any financial incentives for doing cesareans. Washington State was one of them, and saw a 14-48 percent c-section rate, which obviously alarmed some. Before the policy change:
Statistics have also shown that you are more likely to get a cesarean if you give birth in a for-profit hospital than a non-profit one. They have to make their money somehow, right?
While it's glaringly obvious, at least to birth advocates and those who simply want a choice in their births, lowering healthcare costs in this way would require the obstetrical community to basically change the way they practice medicine, which I don't think is going to happen anytime too soon. Our health care industry is increasingly moving away from focusing on the patient and rather seeing dollar signs every time you hop up onto the exam table, for a number of reasons. They have to make their time "worth it," both because of their own personal pursuits and because of rising insurance costs for them that otherwise wouldn't justify them continuing to practice medicine. You are just the little fish - albeit probably one of the most important ones - in the food chain.
More reading:
Take away the incentives for too many c-sections - Crosscut Seattle
"Whatever you try is just going to end in a cesarean section" - My OB Said What?!
"If a baby hasn't engaged by 37 weeks, we need to do a cesarean section" - "My OB Said What?! (same doctor)
Should OBs be investigated for insurance fraud?
All about the Benjamins? TennCare's call for lower cesarean rates - The Unnecesarean
It's estimated that the US could save $3.5 billion a year in healthcare costs if the number of medically unnecessary cesareans were reduced. I don't know if that's just for the surgery alone, so perhaps the figure is much higher when you account for everything that takes place up to the cesarean. Think about the way a typical birth unfolds in the US:
• Mom is approaching 39 weeks in an otherwise normal pregnancy. Since her doctor is telling her it's "dangerous" to go past her due date, she decides to go ahead with an induction. After numerous doses of Cervidil and Pitocin, her labor finally starts, but is slow and very painful. Perhaps pain relief from the epidural is spotty, or they just need to keep giving her boluses because her labor is so long. They finally agree to do a cesarean for fetal distress. After birth, they decide the newborn must spend time in the NICU because her dates were off and the baby is showing signs of prematurity. He spends a week in the NICU and then goes home. Oh, did we mention this mom was giving birth in a military hospital?
• The mother has already had a prior cesarean, and is scheduled to have another "elective" repeat cesarean.
(This is just based on some of the stories I hear from mothers. While it obviously doesn't always go this way, it's not that uncommon, either.)
While it's been said that Medicaid won't pay for unnecessary cesareans, I'm sure they can find other reasons to do them. When you don't even know what constitutes "necessary" anymore, it's probably not all that hard.
As of 2009, certain states were working hard to eliminate any financial incentives for doing cesareans. Washington State was one of them, and saw a 14-48 percent c-section rate, which obviously alarmed some. Before the policy change:
On average, Medicaid pays $5,000 more for a C-section than for a vaginal birth, and private insurance pays a far greater premium. You don’t have to be a cynic to wonder if that could have something to do with the rise in unnecessary C-sections.Because of that lack of incentive, there is probably more accountability when you are receiving money from a government agency. I won't say there still isn't some form of fraud going on, but it's no doubt easier to get away with if your patient is privately insured. Additional health care costs probably come from extra items tacked onto your bill. Didn't receive an epidural but it's on your bill? Your health insurance company will probably pay for it anyway, even though you've called to complain. One West Virginia OB faces up to 340 years in prison for her part in billing patients for things they never received. Those little "extras" can really add up.
Statistics have also shown that you are more likely to get a cesarean if you give birth in a for-profit hospital than a non-profit one. They have to make their money somehow, right?
While it's glaringly obvious, at least to birth advocates and those who simply want a choice in their births, lowering healthcare costs in this way would require the obstetrical community to basically change the way they practice medicine, which I don't think is going to happen anytime too soon. Our health care industry is increasingly moving away from focusing on the patient and rather seeing dollar signs every time you hop up onto the exam table, for a number of reasons. They have to make their time "worth it," both because of their own personal pursuits and because of rising insurance costs for them that otherwise wouldn't justify them continuing to practice medicine. You are just the little fish - albeit probably one of the most important ones - in the food chain.
More reading:
Take away the incentives for too many c-sections - Crosscut Seattle
"Whatever you try is just going to end in a cesarean section" - My OB Said What?!
"If a baby hasn't engaged by 37 weeks, we need to do a cesarean section" - "My OB Said What?! (same doctor)
Should OBs be investigated for insurance fraud?
All about the Benjamins? TennCare's call for lower cesarean rates - The Unnecesarean
Friday, July 15, 2011
Assessing risk
Posted by
The Deranged Housewife
If several members of your family had died from breast cancer, would you want to know if you carried the breast cancer gene or not? What if you were only 18 years old?
That is the scenario described with this British family - 18-year-old Josie is facing whether or not she wants to know, based on the fact that both her grandmother and her great-great-grandmother died of breast cancer. Her mother already had a double mastectomy as a preventative measure.
I have heard of others doing this before - even in the absence of actual cancer - and while I can't necessarily blame them, I feel that it's a bit premature. It saddens me, almost, because to me it means they're living their lives in fear. Trying to cross a bridge they haven't even come to yet, or might not, ever in their lives.
Risk is not always absolute.
Although there is some family history, it's not like it was her mother, her grandmother, and all her aunts. A great-great-grandmother, while lurking in the background, is not really considered an immediate family member. As someone pointed out on my FaceBook page, one thing can really lower that risk: breastfeeding. Did this girl's mother breastfeed her? I don't know exact breastfeeding rates for 18 years ago when she was born, but if they follow current "trends" I'd have to guess that no, she didn't. Was her mother breastfed? Based on the photograph, I'd say she's maybe in her mid-50's. Breastfeeding was on the verge of being abysmally low then, what with the introduction of milk substitutes and hospitals taking a very aggressive stance against nursing. (Although this family is from the UK - where breastfeeding rates are the lowest of all Europe.)
I have to wonder - if part of that fear instilled in her about the possibility of cancer hasn't been part of her own mother's fears transferred to her. Growing up with a mom who had a preventative mastectomy can't be easy to ignore; breasts are therefore seen as weapons of mass destruction rather than a source of nourishment, comfort or pleasure. The idea of being gripped by fear over the possible results of a blood test is like letting those results - real or perceived - rule your life. This girl has dreams and plans of doing things and yet is already acting like she's been diagnosed.
One thing Josie has on her side is technology, and studies that tell her certain things that perhaps they didn't tell her grandmother: that breastfeeding - both just doing it to begin with and for a longer period of time overall - can greatly reduce her risk of getting cancer. That just because she might have the gene, that still doesn't mean that she will get cancer. That even if she does get cancer, there are much less invasive treatment methods that can save the breast. That only a small percentage - maybe between 5-10 percent - of breast and ovarian cancers are inherited. That a portion of breast cancers are a result of hormone replacement therapy and are estrogen-fed tumors. Does that mean her mother went through a double mastectomy for nothing? Maybe.
One side note: Many breast cancer advocacy groups want to increase awareness, both of risk factors and ways to prevent it. Unfortunately, long-term breastfeeding - or nursing at all - doesn't often make the list, which is troubling.
A dear friend of mine died several years ago after a long battle with breast cancer. I don't know that she had any family history, but she originally got breast cancer at age 40, back in the early 1980s. There weren't many options available then, so her choice was a radical mastectomy of the affected breast. Over the next few decades, she fought cancer at least three more times, eventually succumbing. Why? Because they detected the original cancer from the breast - more than 20 years later - in her uterus. What does that mean? That even with a mastectomy, the breast cancer can still kill you. Then what?
I would argue that my friend crossed that bridge when she came to it - rather than systematically removing body parts to ostensibly lower her risk, she lived her life as well as she could in the midst of everything. She enjoyed her children and her grandchildren. She enjoyed an amazing support system of friends and family. But she did not live her life in fear.
One thing I have to wonder: what does a surgeon do when a woman so wracked with fear and emotion comes into his office demanding a double mastectomy? Does he educate her about her risk factors? Does he tell her no, because there is a chance she might not even get cancer? Does he do it anyway, figuring she'll just find a surgeon who will? I don't know what Josie's mom's doctor told her, because maybe some of those things weren't as fully understood as they are now. But I do know what Josie's doctor should be telling her - and saving her from the fear that has controlled her mother's life and now is about to control hers, if she lets it.
Dr. Amy Tutuer likes to argue that, as far as matters of childbirth and pregnancy, women cannot fully understand risk. She basically makes women sound helpless and stupid, as if they are incapable of coming to any conclusion on their own. I argue that while they may not all be doctors and surgeons, they can understand - if counseled properly, and adequately, by their doctors, as well as encouraged to do their own research. How can you come to a rational decision when you're thinking irrationally? When not all the facts are presented, or are falsely misrepresented, how can you make the best choice? It may be too late for her mother to change things, but it isn't too late for Josie.
More reading:
Breast cancer risk: Should I have a BRCA gene test?
Preventative mastectomy doesn't benefit most, study finds
That is the scenario described with this British family - 18-year-old Josie is facing whether or not she wants to know, based on the fact that both her grandmother and her great-great-grandmother died of breast cancer. Her mother already had a double mastectomy as a preventative measure.
I have heard of others doing this before - even in the absence of actual cancer - and while I can't necessarily blame them, I feel that it's a bit premature. It saddens me, almost, because to me it means they're living their lives in fear. Trying to cross a bridge they haven't even come to yet, or might not, ever in their lives.
Risk is not always absolute.
Although there is some family history, it's not like it was her mother, her grandmother, and all her aunts. A great-great-grandmother, while lurking in the background, is not really considered an immediate family member. As someone pointed out on my FaceBook page, one thing can really lower that risk: breastfeeding. Did this girl's mother breastfeed her? I don't know exact breastfeeding rates for 18 years ago when she was born, but if they follow current "trends" I'd have to guess that no, she didn't. Was her mother breastfed? Based on the photograph, I'd say she's maybe in her mid-50's. Breastfeeding was on the verge of being abysmally low then, what with the introduction of milk substitutes and hospitals taking a very aggressive stance against nursing. (Although this family is from the UK - where breastfeeding rates are the lowest of all Europe.)
I have to wonder - if part of that fear instilled in her about the possibility of cancer hasn't been part of her own mother's fears transferred to her. Growing up with a mom who had a preventative mastectomy can't be easy to ignore; breasts are therefore seen as weapons of mass destruction rather than a source of nourishment, comfort or pleasure. The idea of being gripped by fear over the possible results of a blood test is like letting those results - real or perceived - rule your life. This girl has dreams and plans of doing things and yet is already acting like she's been diagnosed.
One thing Josie has on her side is technology, and studies that tell her certain things that perhaps they didn't tell her grandmother: that breastfeeding - both just doing it to begin with and for a longer period of time overall - can greatly reduce her risk of getting cancer. That just because she might have the gene, that still doesn't mean that she will get cancer. That even if she does get cancer, there are much less invasive treatment methods that can save the breast. That only a small percentage - maybe between 5-10 percent - of breast and ovarian cancers are inherited. That a portion of breast cancers are a result of hormone replacement therapy and are estrogen-fed tumors. Does that mean her mother went through a double mastectomy for nothing? Maybe.
One side note: Many breast cancer advocacy groups want to increase awareness, both of risk factors and ways to prevent it. Unfortunately, long-term breastfeeding - or nursing at all - doesn't often make the list, which is troubling.
A dear friend of mine died several years ago after a long battle with breast cancer. I don't know that she had any family history, but she originally got breast cancer at age 40, back in the early 1980s. There weren't many options available then, so her choice was a radical mastectomy of the affected breast. Over the next few decades, she fought cancer at least three more times, eventually succumbing. Why? Because they detected the original cancer from the breast - more than 20 years later - in her uterus. What does that mean? That even with a mastectomy, the breast cancer can still kill you. Then what?
I would argue that my friend crossed that bridge when she came to it - rather than systematically removing body parts to ostensibly lower her risk, she lived her life as well as she could in the midst of everything. She enjoyed her children and her grandchildren. She enjoyed an amazing support system of friends and family. But she did not live her life in fear.
One thing I have to wonder: what does a surgeon do when a woman so wracked with fear and emotion comes into his office demanding a double mastectomy? Does he educate her about her risk factors? Does he tell her no, because there is a chance she might not even get cancer? Does he do it anyway, figuring she'll just find a surgeon who will? I don't know what Josie's mom's doctor told her, because maybe some of those things weren't as fully understood as they are now. But I do know what Josie's doctor should be telling her - and saving her from the fear that has controlled her mother's life and now is about to control hers, if she lets it.
Dr. Amy Tutuer likes to argue that, as far as matters of childbirth and pregnancy, women cannot fully understand risk. She basically makes women sound helpless and stupid, as if they are incapable of coming to any conclusion on their own. I argue that while they may not all be doctors and surgeons, they can understand - if counseled properly, and adequately, by their doctors, as well as encouraged to do their own research. How can you come to a rational decision when you're thinking irrationally? When not all the facts are presented, or are falsely misrepresented, how can you make the best choice? It may be too late for her mother to change things, but it isn't too late for Josie.
More reading:
Breast cancer risk: Should I have a BRCA gene test?
Preventative mastectomy doesn't benefit most, study finds
Tuesday, July 12, 2011
Kids: The greatest inconvenience on earth!
Posted by
The Deranged Housewife
A few months ago my family took me for a celebratory birthday dinner. As we showed up, three kids in tow, the countenance of the room literally fell. An older woman dining with her mother and husband went rigid as a corpse, stealing glances at us occasionally and commenting loudly enough for us to hear. I was on guard, as I usually am, about my children behavior, and while my daughter was happily singing music from "The Grinch" at the foot of the table, they weren't being terrible or anything. I couldn't relax because I was too busy policing my children, making sure they weren't offending other diners, but Mrs. Stick Up Her Butt was obviously put out and they left the restaurant.
My husband and I try so hard to instill good manners in our children, especially when we're in the company of other people. But apparently it isn't enough.
Restaurants are issuing notices: "Adults and teenagers only." So don't even think of stepping foot inside. Apparently the old notion that "children should be seen and not heard" is still very much alive and well, and if your kids dare to make a peep, it must mean that you're a bad parent, not that they're....*gasp* normal kids!
Interestingly enough, we recently dined in a restaurant in another town, wedged between a group of adults and teens and another family with four kids. The family with four was being rather loud, but looking like they were having a good time, which was nice to see. While the din was starting to get to me, I looked around and noticed something interesting: no one was getting uppity, no one was shooting anybody dirty looks or making snide remarks. Where you dine makes a difference: not just the particular restaurant, but maybe even just the geographical area itself. My husband and I have a theory about our area - once you cross the line in one direction, people get snottier and snottier; the other way, and people are more friendly and welcoming.
One restaurant in Georgia got around a no-smoking ban by banning children from the restaurant. Government policies ostensibly meant to protect children from second-hand smoke are void now if you don't have young patrons to protect, and restaurant owners were upset that the government was telling them what to do. So they directed their ire at parents, and told them what to do: leave your kids at home. Because we all know putting your smokes down for an hour for the sake of the kiddies is just too much to ask, isn't it?
I just read that an airline in Malaysia has decided to ban babies from all first-class flights. They have apparently stopped installing bassinets in the first-class area, and now will relegate families to other areas of the plane. Business class passengers, according to one survey, are "annoyed" at the presence of children and wish to see them gone from their area of the plane during flights, too. (I wonder, if someone took a survey of parents, would they, too, find businessmen and women "annoying?" Probably.)
Depending on the size of the child, they could be very affected by changes in altitude and pressure within the cabin. They can't chew gum or make their ears pop when it gets to be too much. A scared infant can't express his fear of flying or just take a Valium to overcome the sensation, and might actually get hungry on the flight, too, but can't have peanuts. And if you're nursing - which can both feed and comfort your baby during the flight - well, forget that, you can't do that, either. Just listen to Barbara Walters, who was thankful that her hairdresser separated her from a nursing mom on a flight - the nerve! Make the hairdresser sit next to her, Barbara - she almost makes the nursing mom sound like she has leprosy or something.
I still remember during one grocery shopping trip hearing an older kid screaming in the shopping cart. He looked old enough to be past the temper tantrum stage, but then again, who knows: there could have been a number of things going on here that could explain his behavior. It was like the Doppler Effect as I went through the store, and one old guy passed me and muttered something under his breath about 'telling that kid to shut up.' It was like he almost expected me to understand because I was a mother who had a kid in her cart, too - like surely I had sympathy for his delicate sensibilities because my kid was behaving so well. I said, "Well, we don't know if there are other issues going on here with that kid. Besides, you should see my other two!" He wasn't sure what to say and just walked away.
So if you're a parent, apparently the only place you can go out to eat is Chuck E. Cheese. If you're nursing a baby, you must lock yourself in the bathroom or stay home. And if you do have to go out someplace, your kids should always behave like angels and never make any noise. The idea that all children act badly in public or are undisciplined prevails, and when they do behave well, people are almost shocked. While I do get many sympathetic glances from older women who have raised their children, perhaps from some who are in the throes of teenager syndrome who long for the days of blissful babyhood, I'm sure many people are annoyed. When a waitress once complained about us (she didn't realize I could hear her clearly) because our kids colored on the table - sorry lady, but you won't get my business anymore. The guy from Bob Evans, however, who brushes it off with a smile and says, "No problem, we have stuff to take that off, it's easy!" will probably see me again.
If you have children, this world is not designed for you. Mall aisles are usually too narrow for your big stroller; a double stroller - forget it, you probably won't be able to get in the doorway. No one wants to see you "expose" yourself to nurse a crying baby. They want your kids to shut up and be compliant, and why don't you put them in leiderhosen and tights while you're at it, the picture of perfection like a Norman Rockwell painting. If you happen to want to dine with your family but your baby is going through that "I want to hear myself scream because I'm happpppyyyyy!" phase, you might as well just get back in your car because we don't want to hear it. You are not entitled to be a person with needs and interests, and neither are your children. And if you dare mention wanting more than two - because you already have the perfect family with a boy and a girl, why would you want more?! - then watch the nervous twitches and apoplectic seizures begin! Instead of being a blessing, children are an inconvenience, along with their annoying habits and needs that trump our own. They can't be hungry or tired at odd times, and certainly aren't permitted to express it - only adults can do that (by complaining, exchanging glances and words or just by behaving, in general, like children, ironically).
What this shows is an amazing lack of empathy that our culture has towards the needs and wants of others, especially children who are unable to express themselves for whatever reason. The goal is to get them weaned, toilet trained and independent as soon as possible: why aren't they weaned from the breast by six months? Why are they still in diapers at age three? They're five now, why aren't they in kindergarten? Never mind if they're just not ready yet; get them on their way to becoming self-sufficient as soon as you can, because kids are just so darned demanding and such a nuisance, aren't they?
The next time someone gives me a hard time, or even looks like they're about to, I'm just going to say, "You didn't just come into the world a grumpy old person - lighten up. You were a kid once, too."
More reading:
Permissive parents: Curb your brats - CNN
More reading:
Permissive parents: Curb your brats - CNN
Wednesday, July 6, 2011
The $64,000 question: Why do you "need" Pitocin in labor?
Posted by
The Deranged Housewife
Photo credit: Brian Hoskins |
I reposted this article on FaceBook yesterday and have been thinking about it ever since. The use of the word "need" irritates most people, including me. But there were some other things that set me off.
It underscores, among other things, the absolute garbage medical practices that pervade in obstetrics that not only put mom at unnecessary risk, but her baby as well. What Nurse Jenna's article does is unintentionally admit that often the best interests of both mom and baby are not in the forefront. In the very opening paragraph of her article, she sets a rather condescending tone:
Many women come to labor and delivery fearing Pitocin, loathing Pitocin, and swearing up and down that “over their dead body” will they have Pitocin to augment their labor.Truth be told, if anyone knows how miserable Pitocin can be, they've probably heard it from other women who have been there, done that. This winter my niece was facing a (basically unnecessary) induction and everyone on her FaceBook were telling her to "avoid the Pit! It's miserable! You'll hate it! Don't do it!" You would have thought she was contemplating suicide, their tone was so adamant. Did she listen? Nope. (Because, after all, we were a bunch of "uneducated women" and her doctor "knew best.") She ended up getting induced and having a horrible labor, although I still haven't heard the details and am not sure I really want to.
Nurse Jenna sort of tries to absolve the doctors and nurses of their guilt over improperly administering Pit by taking the "blame the mother" approach: moms don't stay home long enough, want pain medication in early labor, and in the comments section, moms "insist" on being admitted before they're actively laboring. No where does she really say that doctors are doing it all wrong, but rather, "We want the mother to stay home as long as possible." She mentions how "we" want you to labor comfortably at home in the early stages, where you have access to food and fluids, supportive family members, a bathtub, etc. Seriously?! (Because we all know that once you enter the hospital, all of those things are often restricted to you, even though they can help progress your labor tremendously.)
While I agree that staying home until you no longer feel comfortable is the best idea, a) this seems to contradict what hospital staff often tell us and b) it doesn't necessarily mean you won't be given Pitocin, regardless of whether you need it or not. According to Dr. Roberto Caldreyo-Barcia, former president of the International Federation of Obstetricians and Gynecologists, "Pitocin is the most abused drug in the world today."
Because there is such widespread misuse and abuse, patients often think it's totally normal. Few are going to tell you "Hey, you don't really need this stuff, you know. You can refuse," and instead make you feel like the bad guy if you don't do it. Your baby is the weapon of choice against you, and a powerful one at that. Nurse Jenna's article also highlights how trusting some are of the medical profession and just put everything in the doctor's hands. Many mothers, especially first-timers with no prior experience, will take their doctor's advice as the gospel and comply, even if it goes against their better judgment or wishes. They don't want to be seen as difficult, and if you appear to be questioning your doctor's judgment it could be a long haul for you as the patient. Of course she doesn't mention fetal distress, the rising rate of cesareans and how induction can contribute to that, especially in first-time mothers. And the idea that, even in a woman who is laboring well on her own, maybe with an irregular pattern of contractions (or not even) you might still stand a good chance of getting it. I wonder if this is less about freeing up beds and more about "Ok, let's get it over with so we can move on to something else."
(Case in point: my neighbor had her second child in May, this time going into labor on her own. Labor had slowed down, apparently, and her well-meaning mother-in-law told me that she was given Pit and "the baby was born 20 minutes later." What?!)
Nurse Jenna's post illustrates the problem our maternity industry has in general: more beds are needed, so let's rush things along over here to make room over there. That is not good medicine, and treats the patient like a number or as if they're giving birth on an assembly line. (Which explains why some maternity units are unaffectionately called "baby factories.") How many women do not even get to this point because their due date falls near a holiday, someone's vacation or other important event? People have criticized the idea that "OB's golf, so they need to induce you so they can be there for tee off." Maybe not golf, but the idea that they do not want to be "waiting around all day/all night for you to deliver" is pervasive, so don't kid yourself. The days of your OB rushing in at 11:30 at night in a tux (like my mom's OB did in delivering me) are long over.
While Nurse Jenna blames mothers on "insisting" they be admitted early, I wonder how common this is. It seems more commonplace to keep mothers who should be sent away because you'll simply Pit them into oblivion. I've also read accounts where they aren't "allowed" to go home, even though they want to. Staying home longer is probably key in reducing your risk of getting Pit, but how many of us have heard, "Well, you don't want to deliver in the backseat of your car/on the toilet/in a public place, now do you?" Many women who are in the advanced stages of dilation but not in active labor are sent directly over to the L&D unit ("Do not pass go, do not collect $200!") to be induced when they don't even want to be, including a woman commenting on Nurse Jenna's post. Just because you're 4 cm doesn't mean "it's time," and even though it's not what mom wants, she somehow feels compelled to cave, often because of pressure from her physician.
I'm sure doctors and nurses grow increasingly frustrated at patients who know little and "insist" on care they think they should be receiving, when really, there is an alternative. Instead of accusing, though, healthcare providers should be informing, and telling patients why you should go home - but I think that would reveal other faults on behalf of the hospital and they're not willing to admit to unnecessarily aggressive induction practices. Conversely, it seems that if you know too much - enough to question and refuse - you're treated like crap then, too.
More women probably stay because they don't realize they have a choice, rather than because they "insist." In my time both as a hospital employee and a patient in L&D, I have never witnessed a mother becoming belligerent because she can't stay. And never, in all my talks with mothers, have I heard someone say "I insisted on staying in the hospital because they were threatening to send me home!" Usually, mom thinks there's something going on, hospital staff say no, and she's sent home, tail between her legs. (Yet all the while with the threat of "You don't want to give birth in the car!" hovering in the back of her mind, right?)
Basically, Nurse Jenna is part of the greater conundrum of "modern" obstetrics: don't stay home too long, don't get here too early. If you want to walk, stay home (one L&D nurse's comment). If you walk while in the hospital, it means you can't be hooked up to monitors and machines, but it could progress your labor - but still, don't walk. If you get here too early, going home is not an option anymore. If you labor at home, you'll be punished for not seeking medical 'care.' If you come to the hospital too early, you'll be punished for seeking medical 'care.' So deal with it. Either way, you can do nothing right and it's your fault.
Some of the comments on Nurse Jenna's article are interesting, and very telling:
The pitocin seriously made me want to kill myself, even after having the epidural. It truly was awful.Unfortunately this woman had come in for induction because her baby had died. After 30 hours of hell, she ended up with a cesarean. (!?)
A failed induction, but hey, thank God for the Pitocin!
i had come in for an induction and had pitocin to get things moving faster the next morning...i didnt care, im not that anal about stuff like that! i know there were other women that needed a bed too! and i am grateful for the pitocin post-delivery/csection to help my uterus contract..At 4 cm but not in labor yet? Who cares! Let's just induce!
I got to the hospital at 4cm, but would have much rather still been at home. I had a severe headache, and dizzyness, and called the dr's office and they sent me in to have my blood pressure checked. I wish they would have let me go back home since my blood pressure was fine (I only live 5 mins away), but instead once they checked me and I was a 4, they called the dr., and he decided to just come break my water. I was so frustrated, because he broke my water and started pitocin and the contractions practically stopped for about 3 hours. But I could get up or anything since they'd already broken my water. I was so irritated because it was not my choice to go to the hospital yet.One commenter kind of blows Nurse Jenna's argument out of the water, and probably many of us can agree:
I certainly was told about "Pitocin-passing" by a nurse. I was in a car accident when I was 24 weeks pregnant and moving to a new city. While they monitored my contractions in the hospital I had a great chat with a nurse who gave me the low down. When I told her I wanted a completely drug free birth she told me which hospital to avoid (named the baby machine hospital because they do so many births and regulate with Pitocin) and which drs. would be sympathetic to a drug free delivery.And probably the best comment EVER:
Who is we? The God's of the delivery room? NATURE decides when the baby will come! I'm glad I was informed and confident in my birth not to let a dumbass like you [be] in control!