Greetings from the month of May. This is the first month I have not had labs drawn, and unless I become very symptomatic, I will not have them drawn until mid-July.As you can see by the photo at left, my right eye still has a startled appearance. It's not too bothersome aside from having to scrape tape adhesive off my eyelid and cheek in the morning. I am worried that the lid retraction and puffiness will not resolve on their own. They might, they might not. It might take minor surgery to get the lid to close more on its own.
This marks the seventh month of active eye disease. the eyes will be fine for weeks or even improved, and then I'll have a day of swelling and eye pain and afterward will have reached a new level of lid retraction. I wonder if the overmedication with ATDs and low FT3 and FT4 are responsible for the exacerbations.
Other symptoms are the occasional heart palpitation and some weird twitches, mostly of the right eye and lips. I have more patience than I did (which is not saying much, for those who know me), and no more bouts of "Graves' rage"—the hormone-fueled disinhibition that makes Graves' patients difficult to live with.
And hair—it's still falling out, though not quite by the handful. A fine fuzz is growing in, too. I'm off beta blockers entirely, now, so if they had any effect on hair loss, that should have passed by now. Here's to regaining my former crown of glory.
I also have the chance to rest and de-stress for a time, since I've completed nursing school. Now to take the boards, relax a while, and then go off to the salt mines.
3 comments:
Hi-I'm still learning so much about Graves so I have questions after your latest comment:
1. Why won't you have blood work done until mid-July?
2. When do you see your eye specialist again?
In some ways, I feel like you and I are going through similar things at the same time with the eyes. I've been dealing with the eye symptoms for 7 months as well and mainly it was the puffiness for me and I do have eye lid retraction that is more noticable to me in my left eye. And I too was doing really well for a few weeks (about 6) and then I noticed the swelling and puffiness again. Also, last week I had definite eye aches and could tell that inflammation was happening again. Actually, it's been going on for about 3 weeks now after a quiet period in which I looked completely normal. Today, I have noticed a big improvement- not much swelling and no aches. I have also been drinking my smoothies again with ground up flax seeds and flax oil in them. Have you tried that yet? I got that suggestion off another blog that was on Linda's site. Pam's blog- you'll see if you check Linda's. That person- Pam- swore by it according to her blog. So I tried it and I think it makes a difference. I have one everyday. I did slack off a bit for a week or two but now I'm back to it.
Since you are a nurse do you know anything about that? Do you think that stuff can actually help? Maybe it's all in my head- but I think it does. I get them from Trader Joe's- the oil and flax seeds.
I hope a relaxing summer will help you and just like you, I too hope to have this active phase behind me by the end of the year, if not the fall season.
Thanks for the updates! Have a good afternoon.
Take care,
Kelly
Hi Kelly,
1. My endo thinks my labs have stabilized enough to test less frequently.
2. July 24th. Dr. P. is happy if I show no signs of visual impairment or corneal ulceration, and likes to follow up at 3-month intervals.
Thanks for the flax seed tips. I try to remember to take flax oil caps every day. I get a big bottle every time I go to Costco. I have the seeds but never think to grind them up and use them. Because they have fatty acids, they are great for inflammation fighting, but won't make up for a rotten diet (which I have had for the past two years).
Some of the Graves' bloggers seem to be a little uncritical when going for supplements. All I can say is study up from reputable sources and first and foremost eat right, rest, relax, laugh and get tons of sleep.
Thanks for checking in, Kelly. Do you have a blog, too? I would like to know how it goes for you.
I don't have a blog...I'm just content checking in on yours and Linda's and any other good ones I come across. Plus, I have two very active little boys- 5yrs. and 4 yrs. old so I wouldn't have the time I'd like to give it. And I hope that by this time next year- there won't be much to talk about regarding graves- and I hope that for you too. At least not the eye part. So far so good with the other stuff. I really feel good, better than I have in about a year to year and half.
Thanks for the insight regarding supplements- I know I can't believe everything just because someone put it on the Internet.
Okay, thanks again!
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