Much like "Frankenstorm," I had all the right ingredients for a life-altering perfect storm. More than a year after the pain began, I am able to take a look back and track the past year and half with certainty.
I had my third child in March of 2011. I felt great. Better than ever actually.
At my six-week appointment, I had Mirena (IUD) inserted. Within five months, both of my hips and my right shoulder started to deteriorate from a lack of blood supply (Avascular Necrosis). I saved my left shoulder when I realized the connection and had it removed late in 2011.
But it was still too late for the rest of me. Too much damage had been done.
This is going to be a long post, so try and stick with me if you can. This is information that ANY woman who is using -- or is considering using Mirena IUD -- should read.
INGREDIENT #1 (Silicone & Autoimmunity):
I believe that the silicone in Mirena was released into my body, causing me to have an ANA positive blood test result, meaning that I had an autoimmune issue of some sort. Further testing revealed that I likely developed Sjogren's Syndrome, an autoimmune disease in which immune cells attack and destroy the exocrine glands that produce tears and saliva. The silicone used in Mirena is no different than the silicone used in breast implants.
Here's what the research shows:
Silicone produces abnormalities in immune system functioning.
- Silicone elicits antibody responses and immunological abnormalities,according to a study of 40 women who had received implants more than ten years earlier. Among these women, 60% had an elevated ratio of helper T cells to suppressor T cells; 20% had a blockage in particular functions of T cells and natural killer cells. (Toxicology Industrial Health 8:6 [November/December 1992], 415-429.)
- Scientists at the University of California at Davis reported that evidence suggests that the degradation products of silicone inactivate CD8+ suppressor T cells (key immune cells) and thereby lead to an inflammatory state in the body. (Food and Chemical Toxicology 32:11 [November 1994], 1089-1100.)
- The activity of natural killer cells is significantly suppressed in at least 50% of women with silicone implants observed in a study; this puts the women at a higher risk of developing cancer. The same effect was demonstrated in animals; it was reversed upon removal of the silicone. (Toxicology and Industrial Health 10:3 [May/June 1994], 149-154.)
- High levels of anti-nuclear antibodies (ANAs), immune markers associated with lupus erythematosus, were observed in ten of 11 women with implants reporting autoimmune symptoms. (Lancet 340:8831 [November 28, 1992], 1304-1307.)
- When 500 women with silicone implants were examined, 30% tested positive for ANA levels; those women also had rheumatic symptoms. The results strongly suggested immune activation in women with silicone implants.(Current Topics in Microbiological Immunology 210 [1996], 277-282.)
- Based on a study of 3,380 breast implant recipients, scientists state there is a sixfold increased likelihood that testing these women will show elevated ANAs; the longer the implant has been in place, the greater the likelihood. (Current Topics in Microbiological Immunology 210 [1996], 337-353.)
- In a study of 111 women (with and without implants), those with implants had a statistically significant elevation of anti-silicone antibodies (immune cells focused against silicone as a foreign substance in the body); the highest levels were observed in women with noticeable implant rupture or leakage. (FASEB 7:13 [October 1993], 1265-1268.)
- Researchers at the University of Wisconsin at Madison School of Medicine reported that autoantibodies of unclear significance may be found in 5% to 30% of women with silicone breast implants.(Archives of Internal Medicine 153:23 [December 1993], 2638-2644.)
- Researchers at Monash University in Clayton, Victoria, in Australia, found that women with silicone implants (70 were studied) have elevated levels of autoantibodies to collagen, in a manner highly similar to women with lupus and rheumatoid arthritis. (Current Topics in Microbiological Immunology 210 [1996], 307-316.)
- Among 310 symptomatic women with silicone implants, there were elevated levels of novel autoreactive antibodies to silicone associated antigens(a specific type of heightened immune response) compared to healthy women without implants. (Current Topics in Microbiological Immunology 210 [1996], 327-336.)
- Scientists at the Technical University of Munich in Germany examined 239 breast implant recipients and found the following immunological abnormalities: levels of complement C3 were elevated in 42% of the women; complement C4 was elevated in 21%; and antithyroglobulin (an antibody that attacks a substance in the thyroid gland) was higher in 28%. (Annals of Plastic Surgery 36:5 [May 1996], 512-518.)
- When silicone leaks from implants, immune cells form granulomas (microscopic lumps) around the droplets; the granulomas are capable of severely disrupting the immune system. Silicone plays the role of an adjuvant, providing constant nonspecific stimulation of the immune system.(Journal of Investigative Surgery 9:1 [January/February 1996], 1-12.)
- Typical symptoms associated with silicone include cognitive dysfunction, short-term memory loss, Sjögren's syndrome (dryness in glands, such as the mouth, kidneys, eyes, and lungs), scleroderma, rheumatoid arthritis, dermatomyositis, severe joint and muscle pain, incapacitating fatigue, swollen lymph glands, skin problems, peripheral numbness, multiple allergies, headaches, hair loss, sunlight sensitivity, central nervous system disorders (similar to multiple sclerosis), and others.
- Among 176 breast implant patients examined by doctors at the Hospital for Joint Diseases, Orthopaedic Institute, in New York City, the most frequently reported symptoms were chronic fatigue (77%), cognitive dysfunction (65%), severe joint pain (56%), dry mouth (53%), dry eye (50%), hair loss (40%), and difficulty in swallowing (35%). (Seminars in Arthritis and Rheumatology 24:1 Suppl 1 [August 1994], 29-37.) [SOURCE]
It's an important ingredient ... possibly the most relevant one. But I can't be sure. I only know it played a part. Apart from the FACT that my body was attacking itself, autoimmune diseases, such as Lupus, are a known cause of Avascular Necrosis.
I believe that another important element of my perfect storm was blood clotting. Before Mirena, I'd never had any clotting issues. But when doctors were trying to determine what caused me to develop Avascular Necrosis, my blood tests revealed a clotting disorder. The link between hormones (which are used in Mirena IUD) and clotting is also something that has been researched. Clotting is an obvious cause of Avascular Necrosis. If the blood hardens and can't get to the bones, they deteriorate.
Here is what research has discovered about clotting and Hormone Therapy (HT), which uses one or more female hormones, commonly estrogen and progestin and sometimes testosterone, to treat symptoms of menopause:
- Doctors have long known that taking estrogen increases a person's risk for blood clots. Generally, this risk is higher if you use birth control pills, which contain high doses of estrogen. Your risk is even higher if you smoke and take estrogen. [SOURCE]
- Estrogen pills raise older women's risk of blood clots, but not as much as supplements that also contain progestin, according to new data from a landmark government study on more than 10,000 women. [SOURCE]
- In 2002, the WHI linked estrogen-progestin pills to heart attacks and breast cancer and found that they also doubled the risk of blood clots. [SOURCE]
- HRT is regularly prescribed to women suffering from the effects of the menopause. Previous studies have shown that taking HRT is associated with an increased risk of venous thromboembolism (VTE), a blood clot in the vein which can be fatal.
The manufactured hormones used in Mirena are known as progestogen, one of the five major classes of steroid hormones, which includes progesterone. It is a second generation synthetic progestogen, also known as Levonorgestrel (LNG). It is usually referred to as the "active" ingredient in Mirena. It's probably also important to mention that long-term steroid use is a known cause of Avascular Necrosis. I have never been exposed to steroids, except for the steroid hormones in Mirena.
There has not been much research on this very specific hormone (LNG) and its relation to clotting. But I find it very interesting that there is a clinical trial titled, "The Effect of a Levonorgestrel-releasing Intrauterine Device (IUD) Versus a Copper Containing IUD on Risk of Blood Clots."
I have had my eye on that trial for a LONG time, but the status of it does not seem to ever change. I'm staying tuned though ... patience is a virtue ... especially when it comes to clinical trials of utmost importance to women's health.
Here are two warnings now provided about using Mirena IUD:
- Women with a weakened immune system (often cause by diabetes or by chronic use of steroid medications) should be monitored carefully for signs of infection after insertion or removal of Mirena. (Chronic use of steroids?? ... that's weird -- Mirena IS a chronic use of steroids)
- If you have a blood clotting disorder or if you take "blood-thinning" medications, your healthcare provider may need to monitor you more closely while you are using Mirena.
INGREDIENT #3 (My family medical history):
It wasn't until very recently that I actually had my FULL family medical history. I learned that I had a grandfather with clotting issues, and that I have a grandmother with Rheumatoid Arthritis who has also been diagnosed as "Pre-Lupus." Would knowing this earlier have made a difference? I really can't say for sure. My doctor never mentioned these types of warnings to me. Had I done more research on my own before using Mirena, and had I fully known my family medical history, it's possible that I never would have used Mirena.
And I guess that very idea leads me to write all of this. I share my perfect storm, because I want others to make educated choices about their bodies. I want others to know what hormones and silicone CAN do to your body.
Believe it or not, there is more. Research has also shown that LNG causes a decrease in bone mass density and that it could cause osteoporosis. Research has also shown that the daily release amounts of LNG are 1.5-fold higher in women with a low body weight OR within reproductive age. The LNG can also become systemic, meaning it affects the ENTIRE body (and not just the cervix, which it is promoted to do). You can read about all of those factors and others here.
One doctor thinks it was the hormones. Another says it was the steroids. Another doctor said it was a genetic predisposition triggered by Mirena. Some people say its because "I don't eat my vegetables," and they dismiss Mirena as a cause altogether. As ANNOYING as that last one is, I'll give people the benefit of the doubt -- because it is a possible factor.
But I don't think it's as simple as any one of those. When combined, those factors can create a perfect storm.
More than anything -- I believe that had I never used Mirena IUD, I would still be healthy and fully physically able. I believe that I wouldn't have developed an autoimmune condition or Avascular Necrosis without it. That was proven when I had Mirena removed, and the deterioration stopped. Future blood tests will have to determine if my autoimmune condition is temporary or permanent.
The important thing to know is that if you are using Mirena, the ingredients for a perfect storm are there. Please don't wait around to see what type of damage it could cause for you.
"And when he got into the boat, his disciples followed him. And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep. And they went and woke him, saying, “Save us, Lord; we are perishing.” And he said to them, “Why are you afraid, O you of little faith?” Then he rose and rebuked the winds and the sea, and there was a great calm. And the men marveled, saying, “What sort of man is this, that even winds and sea obey him?” -- Matthew 8: 23-27
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/
Thank you for sharing your experience; I applaud your spirit of never giving up!
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