iThyroid.com

THYROID EYE DISEASE STORIES

STORY 1:

I have Graves with TED.  In the last 6 months my eyes have improved to the point that they appear normal again. Here's what works for me: 

1. No caffeine (that means no coffee, tea, colas, chocolate, etc.), no dairy except yogurt. 
2. Regular blood tests to make sure my thyroid levels are in mid-range. I'm on (2) PTU daily, (1) in am and (1) in afternoon, about 8 hrs. apart. 
3. In place of coffee, I drink ginger root tea (no caffeine). In place of milk, I use a soy beverage. 

My eyes improved significantly when I discontinued caffeine, at John's suggestion. Most of the time I only had 2 small cups of coffee a day and wasn't really expecting any results when I quit. Happy day!

This is a confusing disease and what helps one may not help someone else.  It's helpful to keep a journal to record what seems to help your eyes, and what doesn't. 

Hope this helps you.

STORY 2:

From John:

I had never seen anyone with thyroid eye disease until quite recently when I met a woman with very severe TED.  She had already had 10 sessions of radiation treatments. 

You will see in other places that I suspect that cadmium is a significant causative factor in TED because of the fact that smokers have greatly higher rates of TED than non-smokers.

I asked the woman if she smoked and she said that she never had.  I then asked her if she ate green leafy vegetables and she replied that she practically lived on salads. 

From my research I've found studies that green leafy vegetables accumulate cadmium and this is the reason that tobacco is high in cadmium.  Additionally, some tobacco and other green leafy vegetables are grown on soil which has been fertilized with sewage sludge which is known to be high in cadmium from industrial sources.  Green leafy vegetables readily take up cadmium from the soil.

While it seems very weird that the consumption of green leafy vegetables might be a causative factor in TED, this is the conclusion that I've tentatively come to from researching TED and cadmium.  This woman's experience supports this theory. 

I've also heard that spinach is supposed to be a food to avoid by hypers.  Spinach is an ultimate green leafy vegetable and is probably very high in cadmium.  I did a PubMed search  into the spinach and Graves' connection but found nothing.  If anyone sees anything about this, please let me know.   John (BU007@aol.com)

Story 3: 

Graves Disease: Post-Partum Diagnosis and Remission
From: petr0013@tc.umn.edu (Mary B)


Weeks after the birth of my second child, I began exhibiting signs of what I now know was Graves disease, primarily hyperactivity and weight loss. With a toddler and infant, I wasn't unhappy with my newfound energy. As the weeks turned into months, I found I needed less and less sleep. I remember sitting at my computer after midnight amazed that the house was clean, laundry done, both kids sleeping, and I had just finished a major magazine feature story. 

In November (three months post-partum) I had my first-ever flu shot. In December and January 1999, I suffered weeks of a sinus infection I couldn't kick, taking antibiotics for nearly two months. During this time, my energy began to turn into irritability and my weight loss began to alarm me. Always small, I now weighed under one hundred pounds, yet I had an enormous appetite and ate large amounts of food throughout the day. My eyes began bothering me, too. It felt like I had a "headache" behind my right eye that never went away. I attributed this to my sinus problems but now know it was an early sign of thyroid eye disease (TED). I couldn't seems to calm down my racing heart, either. Laying in bed, I could feel my heart pounding in my ears and no amount of relaxation or meditation calmed the sensation. 

In February, my doctor ran a thyroid panel and the T3 was high, TSH low. She said I had a thyroid problem. After waiting six weeks for an appointment with an endocrinologist, I left the appointment after the endocrinologist was an hour and a half late. My symptoms continued to worsen, especially my eyes. I was now very hyperactive and highly productive, yet increasingly crabby with my kids/spouse and unable to sleep or maintain anything near my normal weight. My eyes hurt so badly I could barely stand to walk outside. I finally switched health plans and in June 1999 a new endocrinologist diagnosed Graves Disease.

The endocrinologist started me on the beta blocker atenolol and antithyroid drug, Propylthiouracil (PTU), which are both considered safe for nursing mothers. He also pointed to Graves as the cause of my eye problems and I immediately found a neuro-opthalmologist who advised me to begin taping my eyes shut at night. While my eyes weren't bulging, I was suffering from severe lid retraction and my eyes weren't shutting properly at night, causing scarring to the cornea and constant pain. Taping my eyes shut brought immediate and welcome relief, although I found eye-taping to be a uniquely demoralizing experience.

At this point, I believed that my illness would be a minor life event and I would easily go into remission on PTU. However, the more research I did the more disturbed I became. It seemed to me that all three of the major treatments for Graves disease, radioactive iodine, antithyroid drugs, and surgery, had major drawbacks and few guarantees. In addition, there is no "cure" for the eye disease and I began increasingly fearful of what might next happen to my eyes. 

Six weeks after my diagnosis, I discovered that PTU is classified as a "probable carcinogen" by the U.S. Department of Health and Human Services. You can read this information in "The 8th Report on Carcinogens, 1998 Summary" at http://ehis.niehs.nih.gov/roc/toc8.html According to this report, of 350 people taking PTU for over a year, four developed cancerous thyroid tumors and large amounts of the drugs caused cancer in lab rats. Not only was I alarmed for myself, I was concerned for the baby I was still nursing and shocked that this drug was considered safe for nursing and pregnancy (little of the drug crosses into breast milk or the placenta). I faxed the information to my endocrinologist and pediatrician. The endo had never known about PTU's classification and the pediatrician urged me to consider weaning. The pediatrician had previously researched the issue at my request, and had decided that a nursing baby whose mother was taking ATDs should have his/her thyroid levels checked every few weeks. 

Two days later, I discovered just how toxic PTU was for me personally -- a blood test revealed serious liver disease from the drug. I was instructed to immediately stop PTU and my endocrinologist referred me to a surgeon to have my thyroid removed. The endo advised against RAI because RAI is suspected to increase or worsen thyroid eye disease (TED). While the PTU had brought my thyroid levels immediately within the normal range, within a months after stopping PTU, my TSH plummeted and Ts 3 and 4 shot back up. However, within two weeks my liver function returned to normal. I had three acupuncture treatments for my liver during this time. 

I heightened my research into Graves disease and conventional and alternative treatments. I read medical textbook after textbook at my University's biomedical library. I also poured over alternative therapies. During this time, a couple of women from the National Graves Disease Foundation's bulletin board contacted me to urge me to wean my daughter and take a "wait and see" approach to Graves. Both women had suffered horribly from RAI; both had heard of other post-partum women going easily into remission AND that weaning a baby helped their conditions.

Armed with new information and an increasing suspicion of conventional approaches, I decided to wean my daughter and embark upon an alternative healing program. My endocrinologist and general practitioner were supportive. I gave myself two months to see if I improved and decided I would have the surgery if nothing changed for me within that time period. I had already ruled out RAI as dangerous.

At this point, I hadn't yet discovered this web site or hyperthyroidism list. I found the best homeopath and naturopath in my area, weaned my daughter, and went on a macrobiotic diet. Here's how it unfolded. Remember, when I began, I was taping shut my eyes, weighed under 100 lbs and had an undetectable TSH and high T3.

I remained on beta-blockers and in mid-August, I began taking a homeopathic remedy and immediately stopping having diarrhea and gained five pounds. Four days later, I weaned my daughter and simultaneously began eating macrobiotically and taking the herbs prescribed by the naturopath (leonurus card.,
lycopus virg., melissa offic, and one other I can't decipher from her
writing, perhaps laetuca?). I also ate milk thistle seeds to improve liver function. For the first five days, I experienced flu like symptoms, with visibly swollen lymph nodes, high fever, sweats. 

The naturopath also recommended that I attend to issues of the fifth chakra (regarding communication and will) that, in some philosophical/medical traditions are related to the thyroid. Quite skeptical but committed to trying everything, I did this, sharing with my husband a "secret" from my past that I had thought unimportant but sometimes found weighing on me. While I'm sure there's a tidy psychoanalytic or medical explanation for this as well, I experienced an immediate and profound physical reaction to verbalizing this. It was significant for me and evidence of how intricate the relationship between the endocrine system, immune system, mind is, etc. 

In mid-September, I went for a consult to the Mayo clinic, largely because of my eyes which still required taping shut at night but seemed to be improving. The endocrinologist told me I was headed toward remission; he also said I had antibodies for both Hashimotos and Graves disease and have a 25% chance of autoimmune thyroid symptoms recurring in the form of Hashimotos or Graves throughout my life. The endocrinologist didn't know what to make of my alternative regime, and pointed out that 30-40% of people with Graves go into remission spontaneously and he'd put me in that category. He also said that Graves is a notoriously unpredictable disease and my case even more unusual. The ophthalmologist said my eyes had improved greatly (compared to the records I brought him) and said I could stop taping at night. Both said another pregnancy would mean a good chance of disease recurring; in particular, the ophthalmologist said in his experience, women with TED as bad as mine had very bad recurrences with other pregnancies. 

In November 1999, my blood work was normal but I still had sore eyes, lid retraction, heart palpitations, periodic weight loss, and a pulse around 100!! I decided to stop seeing the naturopath and see a traditional Chinese medical doctor who has a fabulous local reputation (she's a professor from China) with thyroid problems. Finances were a consideration and I felt I had to streamline my care. 

Around this time, I found John Johnson's hyperthyroidism group and began taking supplements, especially copper , zinc, and iron.

So, here's what I'm doing now and why. First, while I'm officially in "remission," my thyroid isn't operating as it did before Graves and my pre-diagnosis TSH was 1.6, my new TSH is below 1. I still experience drops in weight and fluctuations of my thyroid function that coincide with my menstrual cycle. I've also had two ovarian cysts: while an endocrinologist might discount the connection, a lot of women with Graves disease appear to develop benign cysts (ovaries are part of the endocrine system). In addition, I have a 25% chance of the illness returning and want to avoid that. Here's what I'm doing:

1. Seeing Chinese medical doctor who is treating me with acupuncture and herbs.

2. Seeing the homeopath who is now treating me with aconite.

3. Eating, of all things, according to my blood type, a diet which I find
vastly more beneficial for me than macrobiotics. It's a naturopathic
tradition that's been popularized in a book, Eat 4 Your Blood Type.

4. I'd been doing yoga for several years and had quit after my daughter was born, and I started that again. I now practice almost daily, attend classes, and just started teaching. Essential for me.

5. Taking most of the supplements recommended on this web site.

Finally, my eyes are immensely improved. I stopped taping them shut in October 1999 and now they are simply sensitive to the sun and generally painful. The right lid is still somewhat retracted and my neuro-ophthalmologist has recommended lid surgery soon. I am now taking bilberry for my eyes and waiting to see what happens here, too. 

At the beginning of this story I mentioned that I had had a flu shot and sinus problems prior to my diagnosis and worsening of Graves symptoms. I'm not saying that these things were necessarily causative, but I have heard many people talk about taking antibiotics and having flu shots prior to the onset of Graves. There is some speculation that Graves disease is a retrovirus. I simply included these things to provide all possible information as those of us suffering from this disease try to sort out its causes and cures.

My story isn't intended as medical advice, but as a recounting of my own experience. Finally, a word on time and money. Yes, I have and continue to put a lot of both into healing from Graves disease. It's been worth every minute and every cent and time and money are generally in short supply for our family, as they are for most.

Regards, Vesta

Story 5

Subj: Color vision and TED
Date: 1/8/01 9:11:29 PM Pacific Standard Time
From: hkenton@aol.com
Reply-to: hyperthyroidism@egroups.com
To: hyperthyroidism@egroups.com

Hi, John,  As I understand it with TED, the pressure on the optic nerve shows up first by limiting color vision. (This from the gross swelling?) 

At least with me, when the swelling was reduced the color vision came 
back. I'm speaking in very subtle terms when I refer to "color vision". I 
thought I noticed a slight difference (and I mean very slight) in perceiving 
color vision in my one eye.

When checked in the ophthalmologist's office, could not discern the numbers 
on the color chart they use to test your color vision. --- I knew right 
away we were in "deep doo-doo".

Anyway, after being put on Prednisone, which is another terrible issue 
unto itself , the swelling was reduced by about half and I could again read 
the color charts.

Hope this answers your inquiry. Thanks. Helen