Many of you are aware of the struggles my daughter has had with a crazy disease called Grave's Disease. She's had almost every complication a person can have with it. It's been an amazing two years and it ain't over yet.
Well, I've been on a mission to bring awareness to this disease, especially as it pertains to mental health symptoms (DocJohn being on the ball with this years ago, bless his heart), so I tell anyone and everyone...please if you have symptoms or difficult to treat emotional/mental issues, get a simple blood test!
Anyhow, I love the show called Mystery Diagnosis on the Discovery Health Channel, and I emailed them now that everything is winding down with her (except for the seizures that might have an autoimmune link) and her life isn't in danger any longer.
They emailed back with a questionnaire and asking for pictures from all of us, stating that they're very interested in her case and they hoped to hear from us soon!
Wish us luck in spreading awareness!
KD
Here's the email I sent to them if anyone needs to catch up (IT'S LONG and please ignore the typos...lol...I was babysitting while I typed this):
Quote:
Re: Grave's Disease & Autoimmune Hepatitis During Pregnancy, Temporal Lobe Seizures With Suspected Autoimmune Link
I'm writing to you in hopes that our journey this far might help others.
My daughter was finally diagnosed with Grave's Disease after 19 years of difficulty and craziness.
My daughter, Jessica, was a happy, energetic ball of energy as a young child. She was very outgoing and intelligent and, with the exception of many ear infections, very poor vision and the typical milk allergy, a skin condition that was diagnosed as keratosis polaris, she was healthy and of average weight, size, everything.
At six years of age her appetite seemed to triple over about a six-month period of time. She began to put on a lot of weight, and still always seemed hungry while complaining of stomach aches.
She continued to gain weight and have the stomach aches for the next couple of years, and and the age of eight, she began to develop into having a woman's body so quickly that she had stretch marks. I was shocked to find her menstruating at the young age of barely 9-years-old. During this time and after, her stomach pains increased greatly. She had an endoscopy run and was found to have a bacterial infection that was treated but it never really helped the painful episodes.
During this time, the various symptoms were just treated as could be by family doctors, ophthalmologists, dermatologists, etc.
At about 11 years of age, her hair began to get dry and unmanageable and I noticed she had large patches of pure grey running through it. At the same time her skin was really flared and thin-looking.
I took her to a pediatrician who listened and cared, finding it all painting some kind of picture, and took blood tests to check for a certain disease that would bring about premature aging. It took quite a while to get the results back as they had to be sent to a specialized lab in California.
At various times during this period, her thyroid was checked and her counts always came back as normal or slightly hypo. They were never hypo enough to justify a thyroid hormone replacement, though. No doctor ever thought to go the extra step of checking antibodies.
Life continued on with the strong appetite, weight issues, skin and eye condition, but not a lot more was out of the ordinary until she was 15 when her grandmother passed. A few weeks after her grandmother's passing she was suffering from extreme anxiety, insomnia, emotional disturbances (i.e. prolonged crying) and for a change, poor appetite. I boiled it all up into being grief of her grandmother from an unexpected death.
Somewhere in there she underwent an abdominal ultrasound were many cysts were located on her ovaries and she was diagnosed with polycystic ovarian syndrome. This answered some questions, especially her stomach pains, painful periods and weight issues.
Not long after she was having extremely itchy skin with what appeared to be blood pooling under the skin wherever she would scratch. That was terrifying! I took her to the doctor and they just prescribed meds for the itching. Things calmed down and we went on.
After this, she had several more periods of this high anxiety, insomnia, mood swings, stomach and bowel difficulties, appetite extremes. She also had several more periods of the weird itching and rash.
At 18, she ended up in the ER three times due to severe back pain. On the third visit her leg felt heavy and numb so they did a CT scan. At that point it was discovered that she had two herniated discs in her spine and she was put on pain meds and steroids. Though her pain got some better, she went through another extended period described above.
She was in her first relationship and it was serious. She was just starting life on her own, or trying to, looking into college and trying to enjoy her young life. She had been on the BC pill for some time.
From the time she was 16 to 19, her erratic emotional swings and anxiety increased, but she was able to manage them somehow and move forward. She'd had so many weird issues that she dismissed the new weird issues she was having...immediate weird thoughts/memories, sometimes mixed with her vision changing, followed by the most horrible weird nausea she could describe. It never lasted long and every time she would vow to remember the weird thought or memory she was having to keep afterward. She never could. These continued on sporadically once they developed.
On Christmas Eve morning, 2006, she announced to me in shock that she was pregnant. She'd taken, not one, but 8 tests...all positive. Somehow she'd gotten pregnant with having polycystic ovarian syndrome AND being on the BC pill???
She was immediately ill. We went ahead and scheduled her first appt. with an OB and during the typical paperwork that comes with a new patient they asked if there had ever been an thyroid issues. We thought to mention that she'd tested borderline hypo a few times.
The OB's office thought to run extensive blood work and two days later called us to say that we needed to get to an endocrinologist straight away, and that they took the liberty of scheduling an appointment for her already.
She went from bad to worse and was horribly sick while screaming that she was so hungry she couldn't stand it. She was so anxious and filled with incredible rage. Her heart raced continually, and that led to two arrhythmias, her hands shook continually as well as her (insides).
When we got to the endocrinologist, he looked at her blood work results and gave her a complete physical. Afterward he looked at us and said, "Well, Jessica, you have Grave's disease. Not only do you have Grave's Disease, you have Grave's Opthalmaphy as well as a goiter causing your thyroid to be 3-4 times larger than average. He then explained that the worst thing that can happen to a woman with active Grave's is to become pregnant. From there, he went into some really serious and scary talk.
He explained that she very well may lose the pregnancy, and that she shouldn't get pregnant again until this had been dealt with. He pretty much acted as if the pregnancy wouldn't survive. Her thyroid counts were astronomical and she was very ill. At one point she lost 13 lbs. in 14 days. She had to see a cardiologist, and her liver was involved four times. The endocrinologist even ran tests for systemic lupus and rheumatoid arthritis due to her liver involvement and other issues. Those tests were negative, thankfully.
Her symptoms and disease was very difficult to control throughout the pregnancy. She was so ill that there were times I would look at her, fearing I was watching my daughter die...helpless to do anything for her. I was desperate.
It her last trimester her symptoms relaxed a bit, but not long after the baby began to slow way down in movement. The doctors didn't really ever act like the baby was a consideration most of the time. *tears* By this time, though, they were beginning to consider the baby as surviving. The OB wasn't concerned too much with the low movement and the OB and Endo weren't communicating well. My daughter had to kick and scream for a late-term high-risk ultrasound (when the Endo said that regular ultrasounds were a must). We went for the ultrasound and the neonatologist sent her straight to the hospital to deliver four weeks early. The fluid surrounding the baby was extremely low, and he had developed intrauterine growth retardation. The latter being common with Grave's babies.
When we got to the hospital, they planned on inducing labor for a vaginal birth. My daughter explained that her baby had been through too much and she knew it; that she knew he wouldn't be able to tolerate a vaginal birth. They tried to push her into it, tried to scare her into it. She wouldn't budge and explained that the could not force her to give birth vaginally and she would do what's best for her baby as she'd done the entire time. Just after she signed the paperwork, the baby's heart rate decelled dramatically and people were running in the room from every direction. They still mentioned induction! She told them they'd lost their minds and asked for the paperwork. Just after that, he decelled dramatically again and the doctor came running in saying to me, "She knew, didn't she? She was right!"
Our little one was born 4 weeks early to the day and as healthy as healthy could be...his lungs were fully developed and he was even belching on his own like an adult male. hehe.
My daughter was extremely emotionally and physically ill after the birth due to the hormonal changes and the Grave's. She was able to leave the hospital a full two days early after giving birth because the doctor felt she would do better at home with me and her husband. She did.
Her counts remained off, but she did better a couple of weeks after the birth. About three months later, while entering her postpartum period, we were in trouble again.
Her emotional state let us know that her counts were going whacky again. But then, before we could get into the Endo again, she began with the severe itching/blood pooling. I sent her out to the ER with her husband and explained that they were to have the ER dr. test her liver functions.
She came home with a prescription for a pill to help the itching and explained that the ER doctor not only didn't run the tests for liver function, but ridiculed them for asking, stating that if her "liver was doing that, you'd be yellow and jaundiced. It's not your liver."
She got into the Endo, and not only were her counts very off again, but her liver counts were worse than they'd ever been. At this point, the Endo was very concerned. Her meds were no longer working to control her thyroid and Grave's through this postpartum thyroidtoxicosis and her liver was suffering to a large degree.
He put her on an emergency medicine SSKI (potassium iodide - something they give people who have been exposed to nuclear waste or whatnot), and explained that we had a very short window of time to find someone to get that thyroid out of her. The race was on and the risk was high.
He made an appointment, calling himself, with a local ENT and we went home and waited to see him a few days later. When we went to the appointment, the ENT couldn't find any paperwork sent and wouldn't call the Endo. He said he wouldn't remove her thyroid, acted like it was wrong to do and was cold and callous. He said that RAI therapy should be used for her, etc. We tried to explain that time was of the essence and to please call the Endo. He refused. We both walked out crying for the wasted time.
We contacted the Endo, who got on the phone himself and contacted a head and neck surgeon in another city. They fit us into their schedule and we went in. God bless this man. He was kind and caring. We knew we were in good hands. He actually had his scheduled rearranged so that my daughter could have surgery ASAP.
She did beautifully. She's doing much better physically, mentally, emotionally and has has perfect liver counts since her thyroid was removed. Today she takes a thyroid replacement hormone and calcium.
One thing we found that continued, though, when everything settled were these strange episodes mentioned earlier wherein she'd have a strange thought/memory and sometimes a visual disturbance, then the horribly sick stomach. We began to notice that her emotions were out of whack during this time as well. We were putting two and two together again, and we'd thought we were done with that. :-(
Something she said just a couple of months ago made it dawn on me that she might be having a type of seizure. Though I knew/know nothing about seizures, I went online (my old friend for information through the Grave's difficulties) and it explained her to the T! She was having simple partial and complex partial seizures!!!
We went to the family dr who said it did sound spot on, yes, and immediately put her on Prozac and xanax (short term) to try to help the anxiety and emotions during this period and after all she's been through. She then ordered an EEG of the brain. She explained that she was pretty sure temporal lobe epilepsy was going on, and that there very well could be an autoimmune link.
We just got the results of the first EEG and it was normal. The family dr. explained that can happen a lot and probably further testing is needed, but still dx'ed her with temporal lobe seizures and amnesia.
From here, I guess we'll be seeing a Neurologist and follow that through. I finally believe with this last dx, that is also a link to her autoimmune dysfunction, we'll have all the questions answered as well as addressed so that hopefully my young (almost 21 years old) daughter can live a relatively normal life and, most of all, enjoy that miraculous baby who, against all odds, not only survived but was untouched by all this ugly.
We've been told that there are no odds to say how she even conceived with having active grave's disease and hyperthyroidism, being on the BC pill AND having polycystic ovaries! We did find out later (when daughter was going to use the BC pill again for protection before the thyroid was removed) that they won't work on her because the hyperthyroidism were causing her metabolism to "eat them up", making them pretty much useless. So that does answer that question. He's still a miracle child.
He will be tested yearly for thyroid dysfunction and we'll have to keep an eye out for any possible autoimmune diseases with him as they run in both sides of his family now, but we're on our way to life being so sweet. This baby survived against all odds because his conception was a miracle...a miracle sent to save his mother's life when no force on this earth was "getting it" while she was getting more and more ill, preventing permanent liver damage, permanent heart damage, mental illness and the many diagnoses that can surround that. There's no telling where this could have gone had a miracle not occurred.
I just want to share with everyone that I can. I can't help but wonder how many medical and treatment resistant mental illnesses out there are Grave's Disease or autoimmune related? To know that anyone and everyone sufftering with continual anxiety, tachycardia, shaking hands, skin disorders, hair disorders, inflamed liver, mental illness dx's, or even simple things like belly aches, early development and eye issues, etc. could have a simple blood test just to rule out something very treatable.
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