January 2013

Hysterectomy or Not – Angela’s Endometriosis Update

Published on January 31, 2013

5876 views

Well the time has come and I will be undergoing my second surgery for Endometriosis and PID damage February 28^th – a hysterectomy.

My health has been alright, all things considering. My husband and I haven’t been intimate for a while as it’s extremely painful to have sex and the medication I am currently on (Cymbalta) has lowered my sex drive almost to nothing. If we do have sex it takes extremely long to orgasm and sometimes I just can’t at all. That is very frustrating.

I haven’t had too much pain lately in my pelvic area and that is making me nervous. It makes me think that I should hold off on the surgery. However my bladder and bowels are bad and I need that looked at for sure. I feel a lot of scar tissue up near my liver and diaphragm where the endometriosis was before, so I am pretty sure the scar tissue is just all over the place.

The surgeon is making me extremely nervous. Her last words to me were “I am going to take your tubes and your left ovary, if there are complications I will open you up and take it all out.” When she said that, I just sat there. I couldn’t get any words out. I have asked for a hysterectomy so many times before, but have been refused. Now I am not prepared if she does one. I am more confused than ever.

I have researched hysterectomies and endometriosis for five years. I told myself that when I turned 35, if my endometriosis and all of the other issues were still here, I would have a hysterectomy. Well, I am 36 in June and no matter how much I have researched having a hysterectomy, I am still on the fence. Should I have a hysterectomy or not? There are so many complications and I wonder if a majority of my endometriosis is on my bladder and bowels what good would the hysterectomy do?

I had high grade cells removed from my cervix last year. Were these endometriosis lesions? Has anyone ever heard of this? All in all, I want my uterus and cervix out. I am not planning on having another baby and at this point it is safe to say I am infertile due to the shape of my uterus and the damage done to my tubes from PID.

I get depressed thinking about how long it will be for me to go into menopause naturally and what if that doesn’t even help then? Yes, at 36 I want to go into menopause. I want the pain to stop.

This disease is terrible. I wonder what would have happened if they caught it when I first started to have symptoms. Would I have this many complications? Would I have the excessive damage of the deep infiltrating endometriosis that they removed with my last surgery? Would I have the nerve damage that I have now? Would my bowels and bladder be in better condition? There are so many questions, but I will never have the answers to them.

I think that if my bowel and bladder symptoms were not as bad, I wouldn’t be in so much pain. I wonder if the excision surgery removed all the endo and if the pain I have is from endometriosis or something else. I will soon find out. I think there is huge damage from the PID along with massive scar tissue that has obstructed or intertwined with my bowels, ureter and bladder. As for now, I can only sit and wait to see what happens. I go for my pre-op on February 20^th so I can ask more questions then.

What do you guys think? What would you do if you were in my shoes? Hysterectomy or not?

Thyroid Disease Plus Migraines

by Nancy Bonk

Published on January 29, 2013

3152 views

Thyroid and Migraine: Which Comes First?

Many people suffer from migraine and thyroid disease, but don’t realize they can be comorbid. This means the two can occur at the same time but are not necessarily caused by one another. There are over 37 million Americans with migraine disease and close to 27 million Americans who have thyroid disease, half of whom are undiagnosed. Because the thyroid gland plays such an important role in the body, when thyroid disease is present, it is reasonable to suspect that thyroid symptoms might trigger migraines. Interestingly, although the message boards and blogs are filled with discussions of migraineurs who come to find they also have a thyroid disorder, there is very little research connecting the two.

Let’s explore the connection between migraine and thyroid

First let’s talk about Migraines. Migraine is a neurological condition with a complex and not yet fully understood, genetic component. It is thought to be caused by overactive neurons in our brains. Researchers are not exactly sure how or why the brain of a person with migraine is unlike those without migraine but they do know a migraine attack is typically triggered by stimuli. Fluctuating hormones, changes in the barometric pressure, dehydration, certain foods and changes in sleeping patterns are a few stimuli that will trigger a migraine for some people; however the list is quite extensive.

Phases of a Migraine

There are four phases of a migraine attack the first of which is called prodrome. Its symptoms include but are not limited to – frequent yawning and urination, feeling anxious and cranky, being tired and some people have food cravings.

The next phase is called aura – symptoms in this phase include blinking and/or flashing lights, squiggly lines, blurred vision, smelling and/or hearing things that aren’t there, feeling dizzy, confused, neck pain and being oversensitive to touch (called allodynia) – your scalp may hurt when you brush your hair – to name just a few.

The headache phase has been considered the most incapacitating because not only does our head fiercely hurt, but we may feel pain in other parts of our body. Migraine pain is often one sided but can change sides or be on both sides of the head. Our neck, jaw, teeth, eyes and cheeks may be painful in addition to nausea, dizziness, light, smell and sound sensitivity. There can also be gastrointestinal issues and horrible anxiety as well as depression during this phase.

Postdrome, the last phase can take a few hours or even days to recuperate from. Some may feel a sense of wellness during postdrome but many report feeling “wrung out.” In addition to these symptoms others include, but are not limited to feelings of depression, excessive tiredness, reduced emotion and an inability to concentrate.

Risk Factors for Migraine

Those who are obese have a five times greater risk of developing migraine and people with depression are at a three times greater risk. Other risk factors include head injury, too much caffeine consumption and being a woman. Similarly, thyroid disease predominantly affects women, often is associated with weight gain and depression (hypothyroid). Other risk factors for thyroid disease include: being over the age of 50 for men and women, a family history of thyroid disease, smoking, being exposed to certain chemicals and medications, being exposed to iodine, or being iodine deficient, radiation, neck injury, certain medications.

If you have migraine plus thyroid issues, what does this mean for you?

The first thing to consider is getting an accurate diagnosis on both fronts – migraine and thyroid. This is no easy task, especially on the thyroid front, as many women go undiagnosed for years. Visit our friends at ThyroidChange for more information.

You must have a complete exam with your doctor, having him/her go over you and your family’s medical history and discuss your symptoms in detail. While blood work is used as a diagnostic tool for thyroid disease, there are no tests at this point for migraine disease. It is diagnosed by meeting criteria, having a complete neurological exam, reviewing you and your family’s medical history and discussing your symptoms.

Having multiple diseases can be a challenge, especially when first diagnosed. No need to panic, get as much information and education as you can and learn about your diseases. If you do have migraine and thyroid disease, getting your thyroid hormones under control may help reduce the susceptibility to some of migraine triggers, thus reducing attacks.

And who doesn’t want fewer migraine attacks?

About the Author

Nancy Bonk is a patient advocate for living with migraine, a regular contributor to Hormones Matter and other online journals.

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Resources:

Blackwell J. “Evaluation and treatment of hyperthyroidism and hypothyroidism.” Journal of the American Academy of Nurse Practitioners.” 2004;16:422–425.

EMedicine Health. “Thyroid Problems.” WebMD LLC. January 4, 2013.

Shoman, M. “What is the Thyroid?” About.Com. January 3, 20123

Shoman, M. “Risk Factors for Thyroid Disease.” About.Com. January 3, 2013.

Press Release. “News from the 31st Annual Scientific Meeting of the American Pain Society: Risk Factor Management Helps Prevent Migraine Attacks.” Honolulu. Hawaii. May 17, 2012. http://www.americanpainsociety.org/about-aps/content/aps-risk-factor-management-helps-prevent-migraine-attacks.html

Women in Combat: Thoughts from a Female Marine Officer

by Lisbeth Prifogle, MFA

Published on January 28, 2013

3288 views

Over the last couple years, women’s roles in the US military have been expanding. On January 24, 2013, Defense Secretary Leon Panetta announced that the congressional ban on women serving in combat was lifted. Women can now officially serve in combat arms military occupational specialties and in ground combat units below the brigade level. (The brigade level is approximately 3,500 troops and is furthest from the front lines. They act as mostly support units for the troops on the front line). This goes beyond GI Jane and could potentially open more 230,000 jobs for women in the service.

This has been a slow development. In May 2011, women were permitted to attend Submarine Officer Basic Course for the first time. In April 2012, the first female Marine officers attended Infantry Officer Course. Shocked as this new announcement may seem the reality is there are no front lines in today’s wars and women have been serving in combat unofficially for some time. This announcement will have consequences, both seen and unforeseen, for the military. After polling my military friends, male and female, here are a few things that will, or at least should, be addressed with this new announcement.

Are We Strong Enough?

Without a doubt, men are going to be concerned with whether or not women are physically able to perform the job. On November 27, 2012, the Commandant of the Marine Corps, General James F. Amos, signed an ALMAR (Marine Corps regulation) that women would no longer be doing a flex arm hang in the annual Physical Fitness Test (PFT), they would have to do pull ups like male Marines.

Starting January 1, 2013 female Marines will have the option to do pull ups for required PFTs. By 2014 will be required to do the exercise that the New York Times reported women weren’t physically capable of doing. (I challenge that reporter to go to any Marine Corps base or Crossfit gym and announce to the world women can’t do pull ups again).

The military has until 2016 to make a case against women serving in Special Forces or other specific jobs that they physically may not be capable of doing.

Draft?

Another question that will need to be addressed is conscription. Now that all jobs are open to women in the military, will women have to register with the Selective Service System? Although this is seemingly like a moot point, it does address the responsibilities of this new measure of equality. The women in the service that I spoke to this week all agreed that this would help alleviate some of the biases that male service members perceive women to be privy to. Equality means equality, after all, not selective roles and responsibilities. A young male Marine that I served with actually brought this to my attention and I think it’s a very important issue to address.

Will sexual assault increase?

Whether or not women are in combat roles, there will be sexual assault in the military. I don’t like this fact, but as long as we tolerate it in the civilian world it will be present in the military world. Furthermore, it’s a problem for both male and female warriors. Would giving women more combat training build their confidence and ability to ward off an attack? Will the military hire more sexual assault victim advocates to increase training and, more important than numbers, provide women and men get help if it happens? This is an issue that the branches of the military and the Veterans Affairs Administration have been addressing, but is it enough? To the victims, no.

If the number of reported sexual assaults increase with this new regulation, will lawmakers backpedal and take these new opportunities away from women? Will that properly address the problem? As a knee jerk reaction, it might please the public, but it would be punishing women and victims, not helping anyone. Another way to consider it is looking at sexual assault at college campuses. As sexual assault rises on college campuses across America, are we going to ban women from going to college? Sexual assault, for both men and women, is a major problem in the military, but the military is a reflection of our society which is becoming, unfortunately, more and more tolerant of sexual assault on both men and women.

Will Unwanted Pregnancies Cause Deployment Problems?

Executive Order 10240: Women’s Armed Services Integration Act of 1948, signed by Harry Truman, prevented women who had a child, natural or by adoption, or was pregnant from serving in the military. Regardless of rank or how many years in service, if a woman became pregnant she was administratively discharged. This Executive Order was not lifted until 1975. It would seem we have come a long way since then, but the attitude of pregnant women in the military does not seem to have changed at all.

According to Reuters, “over ten percent of women in the military said in 2008 they’d had an unintended pregnancy in the last year.” According to this article, women can’t get access to birth control while deployed. Clearly this reporter has never been deployed or interviewed a single woman who has been deployed. While sexual assault and consenting sex does happen in combat zones, both are illegal per military regulations. Furthermore, any woman who wants oral contraceptives during a deployment can get a prescription filled for their entire deployment prior to leaving. I didn’t take oral contraceptives while deployed, but was offered hormones (either injection or oral contraceptives) in order to stop my periods while deployed. It’s standard practice to fill women’s prescriptions for the entire deployment. If I had changed my mind while deployed or had a medical condition and needed hormonal contraceptives for reasons other than birth control, because being stuck in a desert war zone, I could have easily gotten some on base. In today’s war zones, medical supplies are easily transported to even the most remote bases giving women access to that care if needed.

Furthermore, in this article it states, “Consensual sex among members of the same rank is legal. But women may be afraid to ask for condoms, for example, for fear people will think they are violating policy.” Apparently men who are trained to kill other men can’t buy or ask for condoms and it’s solely the woman’s responsibility. Furthermore, if a woman has an unplanned pregnancy, according to Reuters, a man doesn’t have any responsibilities for that action; it’s the female service members fault and problem.

I include this because it shows the mentality of the public and the military that is going to be forced to change. Yes, women have babies, but guess what – men are part of that act and have responsibilities as a father. Progress from Executive Order 10240, yes; but we still have a ways to go.

Female Gear?

With all the fiscal cliffs and cuts I doubt I’ll see this in my lifetime, but when will we see gear specifically designed for a woman? Besides injuries, some causing lifelong disabilities, the gear designed for men does not provide adequate protection for women in the military. As I reported in my article Army Tests Female Body Armor Designed like Xena: Warrior Princess, the Army is designing body armor for women, but whether they will get funding to develop and deploy it is yet to be heard.

What This Really Means for the Public, the Military and Women.

Whether you are for or against this ruling, it is set in action now. Military men will have to learn to accept that women are fully capable of performing the duties previously denied to us. Yes, it will change the culture, but this isn’t a bad thing. There will be more senior officers and enlisted as we will have more opportunities to command. It wasn’t until 2008 that the Army promoted the first four star general, Lt. Gen. Ann E. Dunwoody.

Women who fill these new official positions will have to perform their duties with exemplary manner to prove we can perform these jobs. Any time one single woman makes a mistake, dies, or proves she’s only human, it will sadly represent all women; pressure indeed. The reality is men and women will die in combat – men and women have been dying in war. Women have been serving in combat and with infantry units, but now it is official. This will provide better training for women who already are on the front lines and eventually better gear.

If you don’t want to see our troops dying, male or female, protest to your elected officials to pull our troops out of endless wars rather than punishing ambitious women who are capable of a lot more than they were previously allowed to do in the service.

Holy Shit – This Has to Stop

by Chandler Marrs, PhD

Published on January 24, 2013

1979 views

Cursing in a title, how unprofessional you say. Well, yes it is, but damn it, this has to stop. By now, you are all aware of the inanity surrounding the abortion and women’s health debates. It seems we can’t turn around without another new reality defying piece of legislation coming to the fore. From the Always Pregnant in Arizona (HB2036) to the single-celled persons in the US Congress, one has to ask: has everyone lost their flipping minds? Apparently, not yet; we have still to reach the nadir of bottom-feeding, reality-denying, logic-bending oblivion.

Just this week a female legislator in New Mexico proposed a bill to prevent abortion in the case of rape or incest lest critical evidence for the rape be lost. Really? Really? Have you absolutely no understanding what DNA is? Obviously not.

House Bill 206, proposed by Republican Representative Cathrynn Brown, makes abortion in the case of rape and incest a third degree felony of tampering with evidence punishable by up to three years in prison. The thought being that one most carry to term the offspring of the rapist in order to gather critical evidence linking him to the crime. Hmmm.

Laugh as we might at the ignorance of biology pervading legislatures across the US, this absolute fealty to an ideological end game, one willing to legislate unreality, to rename its truths, is dangerous with ramifications far beyond the abortion debate.

Are there no longer adults in this world, capable of understanding human biology and policy making at the same time; capable of thoughtful and reasoned debates or legislation regarding abortion? It seems not. Or maybe, that is not the point. Maybe reality is passe.

What a wonderful delusion to legislate away inconvenient truths. Where else could this trend lead. Gravity is certainly annoying, perhaps we should start there. Or better yet, as some jester suggested, the mathematical Pi is too complicated– let’s simplify.

I, however, like the sacred sperm act, though not technically reality-defying, it certainly takes the ‘life’ debate to its reasoned absurdity. Ye shall spill no sperm except to impregnate and should ye fail to impregnate, felony feticide awaits. Should ye spill that life giving juice, charges of child endangerment are a must. I see a science fiction movie here: caged humans, milked for their life-giving proteins. Bwahaha!

Snark and humor aside, ignorance is no longer an excuse. Silence is not acceptable. This shit has to stop. Reality exists, facts matter, laws of physics and human biology apply. These things cannot be legislated away to serve a political or religious aim – unless we let them. Malleus Maleficarum anyone?

FDA Approval: The Mighty Drug Label

by Lynda Chang

Published on January 23, 2013

2345 views

In the first two articles for our educational series on the U.S. Food and Drug Administration (FDA), we covered what the FDA is about, and what it means when an approved drug is used off-label. We now dive into Part 3 of our continuing series: The drug label.

The CDER and the FDA

The Center for Drug Evaluation and Research (CDER) is part of the U.S. Food and Drug Administration (FDA), and is responsible to evaluating and monitoring new drugs before they can be sold. CDER monitors both prescription and over-the-counter brand name and generic drugs to ensure they work correctly and that their health benefits outweigh their known risks.

Drug companies seeking approval for a drug must conduct their own research, and then provide their test findings to CDER, where a team of salaried physicians, toxicologists, chemists, statisticians, mathematicians, pharmacologists, project managers, and other scientists review the company’s data and proposed labeling. It should be noted that it is up to the drug company’s discretion on what they report to CDER. We assume they report the good, the bad and the ugly but one has to question if this is reality when the drug company has much at stake in the approval process. Indeed, many recent cases suggest not all data are provided, Vioxx, Bextra the most notable.

In the perfect world, the CDER team will conduct its independent and unbiased review to give the drug approval for sale, noting CDER does not test the drugs, but does its own limited research into a drug’s quality, safety and effectiveness as part of its responsibility to consumers. In the real world we see evidence that this is not a fail-proof system as there have been a bevy of recent cases where drug companies have not submitted all of their data. In the quest for approval, they submit only positive data and/or falsified data.

FDA Ethics

All FDA employees are subject to the following ethical standards, noting that this is in an ideal world:

Financial disclosure prohibiting certain employees from holding a financial interest in a significantly regulated company, whereby more than 10% of the firms products or income are derived from products or services regulated by the FDA.
Federal Conflict of Interest Statutes: The Federal conflict of interest statutes assure that Government employees conduct Government business effectively, objectively, and without improper influence. These statutes govern representational activities, financial interests, outside compensation, and use of official information by Government employees.
CDER Manual of Policy and Procedures: Outside Activities: FDA Conflict of Interest Regulations require advance administrative approval prior to an employee participating in certain outside activities, whether paid or unpaid.
FDA Ethics Program – Post Employment Restrictions: FDA employees are subject to certain restrictions after they leave Federal service

Drug History and Other Public Information

Anyone can search for FDA approved drug products at Drugs@FDA to look up official information and find:

Labels for approved drug products
Generic drug products for an innovator (brand name) drug product
Therapeutically equivalent drug products for an innovator (brand name) or generic drug product
Cnsumer information for drugs approved from 1998 on
All drugs with a specific active ingredient
The approval history of a drug

Off-label Versus New Approvals

Over the lifespan of an approved drug, new medical evidence often points to new uses for an already approved drug. Sometimes the drug is used off-label for these conditions – see my article,”Going off on the off-label trail” for details. Alternatively, a company may wish to gain official approval to use the drug in a new way for a new condition. To gain approval, the FDA requires additional studies to for each new use. It is up to each drug company to decide whether or not to target approval for new uses, with the target payoff being the ability to market and get a higher return on its investment than off-label use.

BOTOX® and the FDA

One such company that has been successful in this venture is Allergan with its blockbuster drug BOTOX® (onabotulinumtoxinA). BOTOX is widely known as an aesthetic treatment for facial wrinkles, however it was initially approved by the FDA in 1989 to treat blepharospasm (eyelid spasms) and strabismus (visual problem in which the eyes are not aligned properly and point in different directions, aka crossed eyes). Allergan then sought and received FDA approval for the following:

Year 2000: BOTOX® therapy for cervical dystonia to reduce the severity of abnormal head position and neck pain.
Year 2002: BOTOX® Cosmetic (onabotulinumtoxinA) – the same formulation as BOTOX® – with dosing specific to moderate to severe frown lines between the brows.
Year 2004: BOTOX® for severe underarm sweating when topical medicines don’t work well enough.
Year 2010: BOTOX® therapy for increased muscle stiffness in elbow, wrist and finger muscles with upper limb spasticity, and BOTOX® for the prevention of headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years or older.
Year 2011: BOTOX® to treat leakage of urine (incontinence) in adults 18 years and older with overactive bladder due to neurologic disease who still have leakage or cannot tolerate the side effects after trying an anticholinergic medication.

The word “botox” stirs up negative connotations; rat poison and over-plasticized vain men and women with frozen faces. In reality, it’s a two-chain polypeptide protein and neurotoxin produced by a purified form of bacterium Clostridium botulinum. It works by relaxing the contraction of muscles by blocking nerve impulses, resulting in muscles that can no longer contract. It was discovered by scientists in the 1950s to reduce muscle spasms, further studied as a treatment for crossed eyes in the 1960s and 1970s, and subsequently recognized by Allergan in the late 1980s for its potential multiple medical uses. Allergan has worked with the FDA to follow the process, but has also been in the hot seat with a 2010 settlement when it was charged with illegally promoting and selling the drug for unapproved uses.

FDA Framework is Not Perfect

The FDA provides a framework for reviewing products before they hit the market. It is not perfect and as we have seen in recent years, likely requires a large overhaul. Ultimately, however, the responsibility for our health and healthcare decisions lies with each of us. Do yourself a favor, explore the FDA and other medication websites. Learn about the medications you use. Do the research. Your health depends upon it.

Much Ado: Reduced Penis Size Post Prostate Cancer Treatment

by Chandler Marrs, PhD

Published on January 21, 2013

2924 views

Prostate cancer is the most common cancer among men in the US. It is second only to lung cancer in causing death. As of 2009, the most recent CDC stats reported, over 200,000 men are diagnosed annually and almost 30,000 die. Prostate cancer is a disease of older men with over 65% of those diagnosed over the age of 65. In men under the age of 40, the rate of diagnosis is 1 in 10,000 compared to 1 in 15 for men between the ages of 60-69.

Even though prostate cancer is the most common cancer among men, it is the most survivable with 91% of the men living 10 years post diagnosis. Because of its high survival rate, the quality of life post diagnosis and treatment is of great concern. Depending upon the treatment selected, post treatment side effects include:

Urinary, bowel and erectile dysfunction
Infertility
Hormone and chemo side effects

A new study published in the journal Urology found that some men report slightly shorter penises post prostrate cancer treatment – a side-effect that they were none too pleased about. The study looked at complaints of reduced penis size in 948 men with recurrent prostate cancer. Results showed that only 2.63% (25) men reported a perceived reduction of less than 1/2 inch. Penis size was not measured pre- or post- treatment. In fact the study was conducted retrospectively – 5 years post treatment. Nevertheless, the authors and editors thought this worthy of publication.

According to the study’s lead author, Paul L. Nguyen, M.D., a radiation oncologist at Dana-Farber Cancer Institute and Brigham and Women’s Cancer Center in Boston:

“Some people might think this is frivolous — who cares about a slightly shortened penis — but it really does affect people’s lives,” he said in an interview. “If guys [in the study] had this bad result they were much more likely to regret the path they chose. This is important to talk about up front when people are making their decisions.”

Certainly, if in fact this was an actual, measurable side-effect of prostate cancer treatment, then men should be apprised of its possibility. Since the study was retrospective, no measurements were taken and the study was conducted entirely in a population of older men where age-related shrinkage is just as likely as treatment related shrinkage, it is difficult to determine what, if any effect, treatment had on actual penis size.

Even if there was measurable, though minute shrinkage, it seems like this may be the least of one’s worries when facing prostate cancer. Perhaps, we should be spending more time on mitigating the more severe treatment side-effects, or better yet, preventing prostate cancer altogether. Finally, why was this study published at all?

Gardasil and Thyroid Cancer: A Personal Account

by Danielle Nicosia

Published on January 17, 2013

7133 views

One reads about misdiagnoses in the medical world but no one truly talks of the frustration, relief and anger that follows after a patient finds out they have been misdiagnosed for years. I, for one, understand that feeling and everything that comes with it –this is my story.

I am 27 years old and have been sick for seven years. When I was 20 years-old I blamed my illness on the HPV Gardasil vaccine, which sent me to the hospital after two days of taking the shot. Following that incident, I was in and out of hospitals for years as they tried to find out what I had. The doctors were baffled and didn’t understand why I was having non-epileptic seizures; I experienced sensitivity to light, syncope, sudden loss of consciousness as many as 2 to 3 times an hour, followed by confusion, heart palpitations, extreme fatigue and pain and weakness in my legs. Although doctors did every test in the book, none of them knew what was wrong with me.

In 2008 I met with a neurologist at Winthrop University Hospital. He immediately admitted me for an MRI and CAT scan of my brain. After several weeks in the hospital the neurologist sent me to Long Island Jewish Hospital in New York, where I was admitted for two weeks for monitoring. After weeks spent in multiple hospitals, the doctors explained they couldn’t find the problem and had no concrete diagnosis. I was confused and frustrated; I knew there was something wrong.

The pain continued to increase; I felt pins and needles throughout my entire body and soon I couldn’t feel my feet or be able to stand. If I tried to stand for a few seconds, I would fall. I tried more doctors, but many of them didn’t feel comfortable treating me. Needless to say, I started to give up. I quickly went from walking perfectly fine, to needing a walker, and then being confined to a motorized wheelchair. In such a short amount of time for a young woman, this experience was horrifying. I couldn’t hold a job or go to college since the pain in my legs and feet was excruciating.

After more tests – EMG, CAT scans, MRI’s, and CTA’s – my lumbar puncture test showed I had fluid in my brain. How could this be I wondered.

In 2010 I went to a rheumatologist and he discovered that I had Fibromyalgia and Peripheral Neuropathy. To confirm the diagnosis several excruciating nerve tests were done. It turned out that this disease caused my immobility for many grueling months. The test results concluded I had nerve damage in my legs, which was preventing me to walk.

After years of tests, scans, blood work, and thousands of dollars in hospital bills, this rheumatologist finally understood my diagnosis. Unfortunately, the seizure-like symptoms were still occurring. My entire family and I were ready to give up in the summer of 2010, when I decided to go to Winthrop University Hospital in Mineola, New York to do Hyperbaric treatment. The doctors gave me Hyperbaric Oxygen Therapy, which was a life-changing therapy. The seizure activity lessened as the weeks passed and I finally returned to college. I was feeling better for the first time in many years.

In the summer of 2012 I began to have severe pain in my neck. At this time I didn’t have a regular physician so I found one and discussed my entire health history with him. The physician was extremely concerned so he sent me to see an oncologist right away. The oncologist reviewed my blood work and sent me to an endocrinologist because of the results. I waited several weeks to see the best chief endocrinologist in the area, when finally I felt some hope. I explained all my symptoms to the doctor including the pain in my neck, my weight gain, and my severe fatigue. He diagnosed me with Hypothyroidism. The doctor put me on a low dose of medication (Levothyroxine) and said, “see you in six months.” Hypothyroidism, I found out, is a thyroid disease in which your thyroid gland does not make enough of the thyroid hormone. Weeks later I found out not only did I have Hypothyroidism, I also have Hashimoto’s Thyroiditis which is an autoimmune disease that attacks your thyroid.

Weeks after this diagnosis, I began to have more pain in my neck and was starting to have problems swallowing food and water. At first I thought it was a cold coming on, but as weeks went by it didn’t subside. I returned to the endocrinologist and expressed my concerns but I was told that nothing was wrong and that I was suffering from a cold. I knew that I didn’t have a cold because I had just seen my regular physician who claimed I was healthy. The endocrinologist wouldn’t issue me a sonogram for my neck, so I called my oncologist who wrote me a script that same day.

In July 2012, I had a complete sonogram done of my neck at the Woman’s Breast Imaging Center located in Garden City, New York. That day turned into a four hour appointment, which was uncomfortable to say the least, especially since following my sonogram I had to be issued a biopsy. Hearing biopsy for the first time in my life was yet another horrifying experience. I remember sitting up on the examination table, crying as my cousin and mother tried to calm me down.

Several days later I received a call from the doctor in the imaging center. I knew right then and there, something had to be wrong. The doctor said my name, then paused. My heart skipped a beat as I waited for the news. “Danielle, you have Thyroid Cancer,” he said. “You need to be seen immediately at a cancer center to treat the two tumors in your body.” Tears streamed down my face. I couldn’t comprehend the words that were just said to me—I have cancer?

I realized then that the endocrinologist not only misdiagnosed me but didn’t pay attention to me when I was in pain. He brushed my symptoms and my concerns off as if I didn’t matter. Needless to say, I was livid.

Two days later I got a formal apology from the endocrinologist. I was shocked and impressed that he called. He apologized for misdiagnosing me and told me that if there was anything he could do to let him know. “I assume you do not want to come back to our office, but if you need anything I will be happy to help,” he said. I told him that the one thing he could learn from this is to listen to his patients. He took this advice with an embarrassed silence.

It took me four days to figure out where I should be treated. I was overwhelmed by the words, ‘you have cancer” and understood these three words would change my life completely. After thorough research, I decided to get treated at Memorial Sloan Kettering Cancer Center located in New York City. I had an amazing surgeon who did a total thyroidectomy and removed several lymph nodes that were cancerous. In December 2012, I started my treatment, which included Radioactive Iodine because of the spread. I had to be put in isolation for a few days because I was radioactive. While the experience was scary and unnerving, I owe a big thank you to my amazing surgeon and to my wonderful doctors at Memorial Sloan Kettering for saving my life. It was a relief knowing that my doctors had my best interest in mind.

Knowing something was wrong with my body when the world kept telling me otherwise was a lonely and frustrating–especially for seven years. Although the time was tough, it also taught me that I had to become an advocate for myself. Not only did the diagnosis of Papillary Carcinoma Thyroid Cancer change my life, but the journey itself did as well. I learned to trust my instincts, and that I am stronger mentally, physically and psychologically than I ever thought possible.

PLEASE GET YOUR NECK CHECKED!!

Below are resources that help those suffering of Thyroid Cancer:

1. Thyroid Cancer Survivors Association- http://thyca.org

2. Light of Life Foundation – http://www.checkyourneck.com

3. Follow Danielle’s Journey: http://findinghopewiththyca.blogspot.com

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

Gardasil: The Controversy Continues

by Lisbeth Prifogle, MFA

Published on January 17, 2013

7878 views

You have an 11 year old son or daughter. You go to the doctor for a physical or broken bone and he/she recommends a shot for the human papillomavirus or HPV. The name alone sounds horrifying, but then they tell you that this virus causes genital warts and [gasp] cervical cancer. You immediately want to surrender to whatever it is that the doctor is suggesting in order to protect your child. While HPV is the virus that causes these two medical problems, they leave out the fact that there have been many serious side effects, including death, linked to the vaccine. Here are some more interesting facts that I previously reported in Gardasil, Miracle or Deadly Virus?:

Researchers have identified 100 different strands of the virus, the Gardasil vaccine only protects against 4.
Sexually active individuals have an 80-85% chance of being infected with one of the identified 100 strands of the virus in their lifetime.
A healthy body can fight off the infection 80% of the time.
With early detection, thanks to the annual pap smear test, cervical cancer can be detected and successfully treated. In 2008, the CDC reported that 12,410 women in the US were diagnosed with cervical cancer. Only 4,008 women in the US died from cervical cancer.

We all want the best for our children. Most parents here the words cancer, genital warts and immediately jump to the conclusion that this vaccine was approved so it must be safe. However, according to the Vaccine Adverse Event Reporting System (VAERS) on the Center for Disease Control (CDC), where parents and patients can report adverse effects of any vaccine, “over 25 million doses of Gardasil and there was an average of 53.9 VAERS reports per 100,000 vaccine doses. Of these, 40 percent occurred on the day of vaccination, and 6.2 percent were serious, including 32 reports of death.” The ongoing controversy of how much of these reported side effects are mere coincidence or a direct correlation can’t be measured on the self-reporting site, but consider this:

As a parent or young adult does the risk of a 6.2 percent chance of a serious side effect to protect your child or yourself from 4 out of 100 strands of a virus that the body can fight 80 percent of the time worth it? What’s more, for the 20 percent of patients that will not be able to fight it off on their own, it is usually caught during an annual pap smear test and treated before causing any major threat to the individual’s health.

Why the controversy? Mainstream media touts that the benefits outweigh the good, while alternative news sites and blogs tell of the horrific side effects that ruined or took or ruined their daughters’ lives (and now it is recommended for boys as a preventative measure as they carry the virus). How do you decide what is best? The important thing to remember is that it is your decision. Look into all the research and decide the risk factors of both getting it and not getting it. Here are some important things to look into as you investigate.

Follow The Money

The US is one of the few countries that allow pharmaceutical companies to advertise on television. The broadcasting company that is paid by advertising revenues is probably not going to disapprove of a product that one of their advertising clients is selling in between news segments. Furthermore, Merck paid doctors to promote the vaccine. Health Impact News Daily estimates that Merck legally paid approximately $2,313,942.81 to doctors to promote Gardasil. How can we trust the doctors on the news to be trustworthy and not one of Merck’s paid advertisers? Talk to doctors you trust and ask them if they were paid to promote the vaccine. Get a second opinion, or even a third.

Furthermore, the following medical associations that promote the vaccine also received funds from the vaccine makers according to the Journal of the American Medical Association:

The American College Health Association
The American Society for Colposcopy and Cervical Pathology
The Society of Gynecologic Oncologists

Why Is It A Law?

Some states tried to mandate the vaccine as a law. Personally, I don’t believe any vaccines should be mandated by law, but especially one that is under as much scrutiny as Gardasil. Taking a closer look at the politicians who did, let’s again follow the money trail. Texas Governor Perry passed the law to mandate the HPV shot shortly after Merck contributed $6000 dollars to his campaign (amongst other ties to Merck); in California, Merck donated $39, 500 to legislators voting yea on AB 499 according to Cal Watch Dog. For more information on whether or not it is mandated in your state, please read Is Gardasil Mandated in Your State? for more information. You can get exemptions forms for mandated vaccines here.

The Billion Dollar Question – Does It Work?

In 2011, Dr. Diane Harper, lead developer of the Gardasil vaccine came out in a press release stating,

“The best way to prevent cervical cancer is with routine Pap screening starting at age 21 years. Vaccination cannot prevent as many cervical cancers as can Pap screening. Pap screening with vaccination does NOT lower your chances of cervical cancer – Pap screening and vaccination lowers your chances of an abnormal Pap test. Gardasil® is associated with GBS [Guillian-Barre Syndrome] that has resulted in deaths. Pap screening using a speculum and taking cells from the cervix is not a procedure that results in death. Gardasil® can be offered along with Cervarix® as an option to prevent abnormal Pap test results in those women who can make an informed decision about how much they value this benefit compared to the rare risk of GBS. If a woman has no access to Pap screening, receiving HPV vaccines may help reduce cervical cancer IF the vaccines last long enough. At this time, Gardasil® is proven to last for at least 5 years, and Cervarix® for at least 8.5 years. Health policy analyses show that there will be no reduction in cervical cancer unless the vaccine lasts at least 15 years.”

Not good press for either Merck or GlaxoKlineSmith, the maker of the HPV vaccine Cervarix. Currently, there are not booster shots of either vaccine, and the shot is highly recommended for children 9-12 because they are less likely to already have been exposed to the virus. Doing a little math, that means the vaccine will wear off around the ages of 14-20.5 (depending on which brand was administered) very likely prior to sexual activity! What’s worse is that prior to approval Merck informed the FDA that if a person has already been exposed to HPV 16 or 18 prior to injection, then Gardasil increases the risk of precancerous lesions, or worse, by 44.6 percent.

The War Wages On

Conventional media and Merck sponsored doctors continue to promote this vaccine, while individuals and alternative news sites continue to warn the public against it. For mothers like Tracy Andrews, the war will never end. Her daughter is one of the unfortunate victims of the Gardasil shot who is permanently disabled because of it. Tracy and her daughter, Alexis, passionately advocate to parents and young adults not to get this vaccine. Together, they also fight to have this vaccine banned. Their story was featured on Lucine and they will also be featured in the upcoming documentary “One More Girl.” This documentary by ThinkExist Productions, plays on Gardasil’s advertising slogan “One less.” The documentary title means “one more girl affected by Gardasil,” while the Gardasil campaign means “one less person affected by HPV.” The documentary is scheduled to be released in the spring 2013. A preview can be viewed here.

To Vaccinate Or Not To Vaccinate, That Is The Question

In the end, you should discuss the pros and cons with your medical professional and decide for yourself and your family what is best. Arm yourself with as much information as you can so you won’t be intimidated by scary words like “cancer” and “genital warts” and can make an informed decision.

Hormones Matter is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

By Jan Christian @ www.ambrotosphotography.com Gardasil_vaccine_and_box.jpg: Jan Christian @ www.ambrotosphotography.com derivative work: Photohound [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0), CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0) or CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

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