[belldandy112]

#1019572

Hello, all. When I joined this board, I sort of jumped right into things without introducing myself, so … (ugh).

Around 2000, I started to lose strength and endurance. At the time, I was training in kick-boxing, so I noticed this right away, and so did my trainer. My TH initially came back normal, but I insisted to my neuro (have temporal focal epilepsy) that something didn’t feel "right." I fatigued easily, slept poorly, had tremors, choked on food and water, and the worst: panic attacks. Long story short, received a provisional diagnosis of M.S. I was very, very depressed about that. Then my dropped weight very rapidly. I went from a very fit 125 to 89 lbs in a very short period of time — 125 might sound heavy for someone who is 5’3", but for an athlete, it’s optimal. I ate all the time — carby, sugary foods — and I don’t know where it went. My resting heart rate (50-60) skyrocketed to 90, and I had palpitations. Finally saw my GP, who took one look and said, "You have to have Graves Disease." And he was right — my TH levels were kooky!

(Humiliations up to this point: having my gym membership suspended because the owner thought I was anorexic; "walking" up and down stairs on my rear; purchasing Ensure.)

Saw an endo and began Methimazole w/ a beta-blocker. I was given Zanax (sp?) for the panic attacks. Spent the first month in bed fearing sudden death and realizing how the term "painfully thin" came about — because it’s painful! There was a month when I went very hypo, but that was to be expected, as my initial M. dosage was quite high. Eventually the dosage got sorted out, and I felt great. Went off meds after a year. During this time, did physical therapy. Gained back most of the weight. Started yoga, then got back into training.

Moved to Alaska in December 2005 — not a good idea, says my endo. The climate was a shock: -40 degrees? In less that nine months, I was hyper. This time I caught it when I noticed muscular weakness and started having panic attacks. But I never felt truly ill. Second Methimazole tx. was a cakewalk. Another nine months, I was off all meds. Since then, my TH levels have stayed in the low range of normal. Have had some problems related to B-12 malabsorbtion which I am currently trying to remediate. I recently noticed pervasive puffiness in my upper eyelids and under my eyes, had a CT scan done — normal; no pressure on the orbitals. But my eye doc referred me to a Graves specialist for safety’s sake, and I see him on Thursday. I didn’t have eye protrusion before, which is probably why Graves was so hard to identify in me.

I’ve made the decision not to irradiate or have surgery unless this becomes life-threatening. I try to keep a positive attitude … I suspect being diagnosed with epilepsy as a "tween" — which is a tough time, believe me — toughened me up. I do a good job of it most of the time, although I have "triggers" (such as dreams) that can send me into a full day of paranoia. Knowing that my "irrational" feelings could be related to Graves, I find a way to react to people and situations appropriately (even though I might not want to). ” title=”Smile” /> I can still work and engage in sports. The condition of my hair is wretched, so I had it cut shorter. I use face cream now, because my skin got dryer. Still can’t manage to put on that last 10 lbs., but my resting HR is back to 50.

The only vice that I haven’t given up is my morning coffee. You can have my Starbucks when you pry it out of my shaking, sweaty hands. ” title=”Smile” />

Oh — I’m a paralegal. Got rid of the unsupportive husband. One cat, a red Somali, named Lennox Lewis. I love watching "CSI," "Grey’s Anatomy" and (the late) "Battlestar Galactica." That’s about it. ” title=”Smile” />

Melissa
Austin, TX

[hyperm]

#1072590

Hey Mellissa,

just a wee quick hello from Scotland and welcome to the forum – this has been my life line over the last few months!

M x

[mamabear]

#1072591

belldandy112 wrote:The only vice that I haven’t given up is my morning coffee. You can have my Starbucks when you pry it out of my shaking, sweaty hands. ” title=”Smile” />
That was one of the funniest lines I have heard when it comes to Graves’ Disease!!!!!

Got rid of the unsupportive husband. <

---

That one is just priceless!!! (although I am truly sorry that you had to go through that as well)

Welcome and I hope you find it wonderful here. Oh and love the latin.

[belldandy112]

#1072592

Thank you for the warm greetings, new friends.

I think that there should be a topic alone for unsupportive people in our lives that quickly get winnowed out. My ex-husband moved us to the arctic against my endo’s advice, and I paid the price. My ex is now in Saudi — he’s a dollar-chaser. Dealbreaker. Can you imagine the poor quality of care that I would have received there? Women are not allowed to go to the doctor without a male relative in tow, and because of the culture there, doctors cannot give thorough exams, if it means touching a female in a "forbidden" part of her body. Sure, there are little "clinics" in the free compounds where the ex-pats live, but that doesn’t do me too much good if I got sick and needed immediate treatment.

You find out very quickly what people are made of when you have this disorder. Sometimes it will break your heart.

[mamabear]

#1072593

Sorry for your loss in the sense of realizing what he was made of. But glad you did something about it and not live the way some do and not get a divorce.

[Ski]

#1072594

Thanks for the intro, Melissa!

I must admit, today I’m getting far more giggles from reading posts than I have in a LONG time, thanks for that, everyone! ” title=”Very Happy” />

One quick note on the puffiness around your eyes ~ sometimes puffiness can result from hyPOthyroid levels, so that’s something to consider and check for. In other cases, the fluids from behind the eyes can be pushed forward, rather than the eyes pushing forward, so checking for pressure behind the eye can be just as important as looking for swollen tissues.

We’re SO glad you’re here! Funny how something like Graves’ can push us into doing for ourselves what we SHOULD (like giving the heave-ho to an unsupportive partner). So glad you did. We all know you’re better off for it.

[belldandy112]

#1072595

Mamabear — Thanks so much for your support. Yes, it was a big disappointment; I believe that in a good marriage, spouses should do what it takes to support their partner in times of sickness, and to focus on making sure that everything is done to ensure that partner’s health, safety, and happiness. My ex-husband gave me many clues, even before the last straw, that he wasn’t too concerned with me. He was insistent on us having children, and wanted to make sure that our children wouldn’t be "damaged" by my disease (e.g., mental retardation, other congenital issues). Hello! How ’bout considering if it’s a good idea that I have children to begin with? Would it put my body be unable to handle it, given my particular symptoms? And, if we did become parents, would be be willing to pick up some serious slack if I got sick? I think that’s a good place to start, but the answer to all of those questions was "NO." So … well … some people cannot love that unconditionally.

Ski — This whole eye thing is a mystery. My primary eye doc couldn’t find any swelling or pressure from behind the eye. When I suffer a severe allergic reaction, my eyes will sometimes "puff" shut, and I have to get a steroid injection to make the swelling go down. This is exactly what this looks like. Only this time, it hasn’t abated. If I gently tap the area, it feels like water retention; sometimes it extends down toward my cheeks in small red striations. It gets much better in the evening, after I go for a run and drink a lot of fluids. I don’t dare wear eye make-up, because just touching the area with eyeliner makes the entire area itchy, and next thing you know, I have half-moons on my cheeks from rubbing.

At any rate, it looks horrendous, and that the people who know me are making comments tells me that it’s obvious to them, too. I intuitively feel that these symptoms are more than just allergy-related, and that this is a Graves issue. There’s no other explanation.

[Ski]

#1072596

Wow, that sounds so troubling! The itching, in particular, doesn’t seem like it would come with Graves’, or more properly (due to the area that’s affected) Thyroid Eye Disease, but of course that doesn’t mean it CAN’T be associated. Please do let us know when you find out, this is interesting.

In the meantime, since you say that the swelling is more pronounced in the morning, you may find some relief just by raising the head of your bed while you sleep. Using a ton of pillows creates stress points at the body’s "bend point," and it’s also easy to fall off the pile in the night, but if your bed is actually raised, gravity can work in your favor to keep the fluid from collecting, even if you are laying flat on the mattress. I have had my bed like that for many MANY years, because puffiness around the eyes was one of my first symptoms, and still recurs (just a little) if I sleep on a flat flat bed. In other news, it relieved my husband’s nighttime heartburn. ” title=”Very Happy” /> Bonus. We put chunks of 4x4s under the frame legs at the head.

Do keep us updated!

[belldandy112]

#1072597

I will let you know what I find out tomorrow — I am anxious to get this resolved! It is a cosmetic issue to a certain degree. I’m in the interviewing process, and my concern is that potential employers will think that 1) I cry myself to sleep at night; 2) I don’t get enough sleep at night; 3) that I have a drinking problem; or 4) that I’m manifesting symptoms of an illness.

I mean, let’s face it … appearances count in the workplace. Even though this is not something I can "help," appearing tired/ill does not work in my favor. I know, I’ve been on the other side of the desk before, and I’ve heard interviewers say things like, "Her eyes looked tired … do you think that she’s a heavy ‘partier?’" That’s the last thing that I want!

I do notice that whenever I fall asleep with my head elevated, I don’t seem to get as much puffiness. Also, whatever side I end up on, that’s the side that’s going to typically be affected. Allergy drops have helped eliminate the urge to itch, but not all of the puffiness. I’m anxious to see what the Graves eye specialist says tomorrow. My eye doc told me that chances are this can be controlled with oral steroids or direct injections into the site. Keeping fingers crossed!!! ” title=”Smile” />

[Author]

Posts