Grave’s Disease

According to my web stats….I had over 300 hits on my site this month from people looking for information on Grave’s Disease. Search phrases like:
sadness graves disease
financial help with children who have graves disease
will my anxiety go when I have rai treatment

It really makes me sad to think of all the people out there dealing with this highly misunderstood disorder. I was told for years by doctors that I was a hypochondriac and that there was nothing the matter with me. When I found the National Grave’s Disease Foundation I was so relieved to know that I was not the only one going through all these feelings and problems and it really helped me make a decision to have surgery instead of RAI. I had to fight hard for that choice because surgery is not the standard treatment in the US.

The first thing to know is that Grave’s Disease is NOT a thyroid disorder. It is an autoimmune disease that can cause a thyroid disorder. The following is an explanation from the Mayo Clinic Website
Graves’ disease is the most common form of hyperthyroidism.(This is a rare disease that tends to affect women over the age of 20. The incidence is about 5 in 10,000 people) Normally, the immune system protects the body against viruses, bacteria, and foreign substances. In Graves’ disease, the immune system mistakenly attacks the thyroid gland, causing it to overproduce the thyroid hormone, thyroxine, which causes a number of symptoms. This autoimmune response can also affect the tissue behind the eyes (Graves’ ophthalmopathy) and the skin on the lower legs and feet (Graves’ dermopathy).

The best advice that I can give all of you is to find a good doctor who LISTENS to you. I don’t care how long it took you to get an appointment with the endocrinologist; If he doesn’t listen to you and your concerns and fears then find another. It will make all the difference in your life and in the outcome of treatment. Take control and do not let anyone tell you no. Here are some other things that you can do to help.

1. Stop eating processed food if you can. Cook fresh healthy choices that stay away from preservatives and too much salt.(extra protein can help but stay away from too much fat)

2. Watch your milk intake as well as your consumption of anything with red dyes.

3. Stop Smoking

4. Do whatever you need to do to cut back on your stress levels until treatment. I cut my work down to part-time and eventually quit until I got the disease under control. I realize that most of you will not have this luxury but there are always little things you can do. Your partner, family, or roommates can really help by taking some of your at home tasks for a while.

5. Try Yoga! You will sleep and feel better. I use a set of DVD’s from Yoga Zone. They offer box sets for different workouts that will really leave you feeling relaxed and strong!
Yoga Zone Box Set at Amazon.com

5. Get at least 8 hours of rest per night. I realize that some of you probably aren’t sleeping well. Even if you are not sleeping…force yourself to go to bed and let your body relax.
I stayed on Beta Blockers for almost 3 years and that was too long! I had to wean myself off the things.

I’ll remind all of you that I am not a medical professional so all the thoughts and advice contained herein are derived solely from personal experience. Lastly, I will post the narrative that I wrote a few days after my surgery. It’s pretty dramatic as all the experiences and feelings were so fresh. Also it was honestly the first time since I was a child that I had really felt good. I take that for granted now…that I can run up 4 flights of stairs and not feel like I’m going to have a heart attack. I still have recurrences when I get stressed…it’s nothing compared to before. Please feel free to email me if you have comments or concerns.

My Choice

I have had Grave’s disease since I was about nine years old. It became active after a period of stress in my life at that time and has gone into remission twice. In 1998, after a remission of eight years, my Grave’s returned with a vengeance. Keep in mind that when Grave’s returned I didn’t see it. Although I had already had the disease for 16 years, it was still undiagnosed.

It makes people angry when I tell them that I felt relieved when I found out about my Grave’s. I don’t mean to imply that Grave’s is nothing to worry about. I’m the first to admit that it can be scary as hell. Every person living with Grave’s has his or her own story. I just mean that the moment I knew I had the disease, I also knew that I was not crazy, manic depressive, sexually dysfunctional, a hypochondriac, and hosting a myriad of psychotic eating disorders that prompted comments from unfeeling individuals like “She must really overeat” and “She’s probably got AIDS…nobody loses weight that fast.” At that moment I began to chip away at the layers of my life and find the real me beneath the rubble.

So what do you do after diagnosing yourself with Grave’s disease? Yes that’s right, we diagnosed my Grave’s via Internet research after my boyfriend commented on the ever-increasing mass of my lower neck. I was ignoring the goiter although I had noticed it months ago…. I concluded that it must be cancer and if it was cancer it was better that I not know for sure. At 25, I was a mess. I mean, I already had high blood pressure, osteoporosis, a weak left kidney, and a heart that rattled away like the little drummer boy on crack. Cancer really didn’t seem so far-fetched at that point you know? After reasoning with me that it was an awfully uniform swelling in my neck and probably not cancer, we began to think about the thyroid. It was something I knew a little about already, two of my Aunt’s already had problems, and one had Grave’s and the other nodules. I don’t know why until that night it really never dawned on me that it was Grave’s…but after staring at the computer screen in awe for about an hour, we realized that I had fourteen out of the listed fifteen symptoms. I felt relieved. (I’m not crazy) I started to cry. (Why is this happening?) I got scared. (Am I going to die from this?) I got angry. (After all the money I spent, weeks in the hospital, why haven’t I been diagnosed before now?) I made doctors appointment. (I’ve got to be sure)

You know that feeling when you are sitting across from a new doctor and telling him or her your whole medical history (or a brief summary thereof that can be squeezed into the ultra tight space that is darting eyes, watched clocks and intermittent sighs?) Or what about the moment when you explain that you have this disease and you and your boyfriend diagnosed it on the internet and your whole life makes sense now and you’ve stopped taking the antidepressants and …wait…uh-oh…. You’ve lost him…he’s not listening…you’ve been discredited now…. You mentioned self-diagnosis…the Internet…. He’s drifting…the fact that red cool-aid and milk make you have an anxiety attack…he’s now concluded that your either crazy, manic depressive, sexually dysfunctional, a hypochondriac, or hosting a myriad of psychotic eating disorders that will certainly prompt rude comments from copious outsiders. Or perhaps you get lucky; this is a student doctor. Still learning, this person does a lot of research on the Internet…not afraid of computers…knows about nutrition…(Hmm…. yes, milk contains iodine, people with thyroid disorders are often sensitive to food or drinks with red dyes) Maybe after 5,10,15,or even 20 blood tests or years or suggestions, your tests come back. “This is consistent with Grave’s”, your doctor says. Surprise, surprise.

Ok, this is you. This is you with Graves. This is you on propylthiouricyl, tapazole, methiamazole, atenolol, valerian, yarrow, bugleweed and open to suggestion. This is you with nightmares, sweats, shakes, heart palpitations, muscle weakness, fits of rage, seas of sadness, depths of depression. This is you when your skin darkens and peels and you just spent a whole day just trying to get out of bed. This is you when none of the medications work. “Radioactive iodine”, says the endocrinologist that it took you five months to get an appointment with. “Don’t worry”, he says. “It’s not invasive. Nuclear medicine will prepare a dose of RAI and come out in protective suits and you’ll have to flush three times after you go to the bathroom, and stay away from children and women, and eat with plastic picnic ware, and then if we have administered the right dose your thyroid will eventually die, could be a year, could be three months, we could give you to much or to little, may have to dose you up to three times, you will probably end up hypothyroid and have to be on medication for the rest of your life, there have been studies done that claim that RAI worsens Grave’s eye disease, but it’s non-invasive. We highly recommend it. We’ve dosed hundreds, thousands, even millions of patients with RAI. I suggest we administer treatment right now”, my doctor says. I scream inside. No one is here with me. I feel cold suddenly. I don’t want to make this decision right now. But he has told me that I am in the last stage of Grave’s. That it could take my life at any time. God help me, I don’t know what to do. Back to the Internet. My old friend. If you can help me diagnose, surely you can help me treat. I make an appointment for the RAI in the meantime. I drive home thinking about glowing in the dark and feeling like I already do.

Weeks pass and I am still undecided. My appointment for the RAI treatment is just around the corner but I don’t feel good about it. I read on the Internet that the U.S. is one of the only countries that uses RAI as the preferred method of treatment after medication. This scares me. Amazing as the U.S. medical system is in my mind I just keep thinking about Fen fen. I read more letters from others that have had RAI. 75% are negative reviews. Common phase usages like trial and error, started to feel better after 6 months, and having trouble getting my levels adjusted are a common vein in all these letters. I call my Endo and tell him nogo. I want to have the surgery.

Blood tests, blood tests blood tests. Mom’s are pulling their children out of my path at the grocery store and staring at my arms in disgust. I feel like a human pincushion. “We have to get your thyroxin levels down in order to administer the anesthetic”, says my surgeon. It’s another month of waiting and taking one of those medications that my body rejects. I’ve taken to not sleeping much. I think that I’m afraid that I won’t wake up again. I stay up all night and redesign my website with a blue water droplet background that reminds me of tears.

I am in a clean white room with people talking softly to me. At least that’s what the “Guide to Surgery at Somememorialhospital says. Instead I am in a clean white room about to go under fighting with the assistant surgeon whom I have never met about whether this is a total or subtotal thyroidectomy. ” Dr Soandso told me you were going to leave part of my thyroid if it is undamaged I say…. To increase my chances of having a normal level and staying off the medication!” I’m going to start crying soon and my boyfriend almost passes out. Who is this guy? Who are the 27 other people in the room? What am I doing here?(yawn) Why didn’t they make Barbie’s ankles bendable like her knees so you could let her wear flats as well as heels?(eyes close) Oh, she had tennis shoes but (going)…you know(going)…..they..never fit quite…r..i..g..h..t*.(gone)

I wake up feeling cold….I must have said so because nurses surround me from every side wrapping hot towels around me until I must look like a little mummy in new bandages. My throat hurts…not at the incision site but like I have strep throat or something. “It’s from the oxygen tube”, the nurse says and I go back to sleep listening to my family whispering to one another about how beautiful I look although I just had surgery and my boyfriend is commenting on the ringlets of my hair spilling across the pillow and I’m reminding myself to thank God for them the moment I’m a little more coherent.

I left the hospital the following day. They gave me a prescription for Percaset but I never filled it. My senses were so sharp and I wanted to keep them that way. I felt as if I had been wearing a veil my entire life and now that veil had been lifted. I felt rational and happy and energetic, and blessed. It’s been over a week and I still feel that way. Perhaps it’s a miracle, perhaps it’s luck, and perhaps it’s a psychosomatic reaction because I made my own choice as to the treatment I wanted and am too stubborn to feel anything but good. Perhaps it doesn’t even matter. Knowing that I made the right decision for me has made all the difference.

I wish you all happiness, love, faith, guidance and above all, health!

Update: 2002 Well here I am, feeling great, almost back to my normal weight and although I have to take the replacement meds, I’ve had no side effects. I realize now how much Grave’s controlled my life, and also how much I let it. I hope that I always feel this good. 🙂 Be well.

Did you know…
13 million Americans have a thyroid disorder and more than half of them are not aware of it. Only one-fourth of 1% of the population of the US has Graves’ Disease!
for more information on grave’s disease click here————> >National Grave’s Disease Foundation

XOXOXOXOX

Lobelia


CATEGORIES : Uncategorized/ AUTHOR : Lo.

3 comments to “Grave’s Disease”

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  1. Lauren M. says: -#1

    Thank you for your post. I have been living with Graves for 8 years now and it can be hard when no one understands what you are going though. Best of luck with your music and stay healthy!

    Lauren

  2. Tina Yost says: -#1

    I didn’t know about the red dye thing. Thanks for posting it. Another great site is here

    http://www.4woman.gov/faq/graves.htm

  3. Richard Miller says: -#1

    My girlfriend has Grave’s disease and has very violent mood swings. I read in your story that you had mood swings too. Is there that can be done to help? Thanks.

    rmiller44@yhaoo.com

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American born Lobelia isn’t just your typical singer-songwriter. A multi-instrumentalist who worked as a studio musician for 10+ years, she has won multiple awards for her songwriting, has been featured in Billboard Magazine, and was one of the original Women of MP3.COM in the early days of the Internet. Now living in the UK after a 7 year stint in Montreal, she hosts several acclaimed songwriter nights at Tower of Song, Birmingham’s best small music venue. An advocate for sustainable touring, she travels the world performing at house concerts and small venues.