[belldandy112]

in reply to: Desperately need advice #1072699

Yup. Same doctor told me a different story.

I have friends in the medical field. The way their practices are run is that they get salaries; they also get a certain percentage of anything billed over a certain amount per month. My friend (a cardio specialist) is encouraged to go for the most expensive treatment option, such as surgery, radiation, etc. He was told my his partners that keeping patients on medication doesn’t bring in enough money. Billing the insurance companies for the most expensive procedures that they will pay for, however, is.

On a personal note, I also have temporal focal epilepsy. It is completely manageable with very low doses of Phenobarbital. I might have one "trance" every three or four years. And yet most of the neuros that I went to pushed me to have brain surgery. I’m not joking. Their reasoning was that years of medication use could cause kidney failure … well, yes, in a very, very small percentage of patients. I finally found an ethical neuro who told me that the other neuros were using scare tactics to get me to consent to a pricey procedure so that they could collect on the insurance $$$, and that the risk of brain surgery was far greater. I’m so glad that I didn’t consent to that — heaven knows what I might have turned into.

The most expensive treatment is sometimes recommended for other reasons that you might think. Doctors and clinics have to make money, too, and they will sell the most expensive "product" they can.

[belldandy112]

in reply to: Should I stop this never-ending cycle with ATDs and do RAI? #1072982

daleesai72 — I am terrified of that quality of life, too. I had a taste of hypothyroidism when I was first being treated for Graves … I went extremely hypo because my dose was too high, and let me tell you, Graves symptoms were a walk in the park compared to that. I felt like I’d been shot through the eyes with an elephant dart and literally could not remember about that month. Luckily, my husband was working at the time and I was able to take a leave of absence. There is no way I could have worked in that condition. Even when my Graves symptoms were the worst, I was holding down a high-pressure research job.

Now that I’m divorced, I have to be able to work. S.S.I. payments just aren’t going to cut it, and I’m not even sure that I would qualify if I elected to have a procedure that disabled me to begin with. For me, it’s just too big of a risk to take.

[belldandy112]

in reply to: Graves’ Disease – Tips & Tricks for hair/skin/mental health #1075254

Absolutely, he’s aware. Although he thinks that I’m a little strange for boxing (but then again, everyone thinks that!).

Always a good idea to wear a heart monitor to make sure that you’re within the correct MHR for your age. As people with Graves tend to have cardio difficulties, I’m always peeking at that monitor, even when in remission.

It was my first endo who suggested started back into athletics with yoga, and this opened up an entire new world for me that I really enjoyed. I would always advise, however, making sure that the teacher is certified. You can hurt yourself doing yoga, if the teacher does not spot incorrect positioning.

I chose a trainer who was also a physical therapist. That made a lot of difference, in that my program was designed accordingly. I also received a full check-up at a sports medicine clinic to make sure that I had no bone loss going on — they did a density scan. Cracking a wrist would not be fun if I were in the beginning stages of osteoporosis.

I became much more athletic after being diagnosed with Graves, branching out into various other sports. What I found is that I first notice when I’m going "hot" when I can’t power-lift as much weight or run as long as I used to. This cue allowed me to catch the subsequent "lapse" very early, as well as the B-12 deficiency. ” title=”Smile” />

[belldandy112]

in reply to: Desperately need advice #1072697

James — what a great story! My first bout with Graves was the worst. The second was almost negligible. I go for long periods of time (around two years) without going hot.

I’d like to add … if you really want to know if radiation treatment is your best option? Tell your health care provider that your insurance doesn’t cover pre-existing conditions and that there is no way you can afford to get the radioactive treatment, that not being covered under your plan. I was in those circumstances. All of a sudden, the story changed: "Graves is easily treated with low doses of medication, very little risk, blah, blah, blah … this is the route I’d recommend."

That should tell you all you need to know right there.

Melissa
Austin, TX

[belldandy112]

in reply to: Graves and B-12 Malabsorbtion? #1072631

Jake,

Thanks for your response. This is one side-effect that was never mentioned to me before. Did you ever try sublingual B-12, or did you go straight to the shots? I’ve read mixed opinions about the Sub-l tabs and shots — some say they are equally as effective, and others say that only the injections or subcutaneous B-12 is the way to go. Opinions on that?

"Pernicious." I don’t like that word very much.

Thanks again —

Melissa
Austin, TX

[belldandy112]

in reply to: Graves Opthalmopathy #1072652

Thanks, Jake. I really want to nip this in the bud.

My general opthomalogist (is that spelled right?) gave me a whole slew of products to test out. I found something called Optivar that is totally wonderful. It’s used for allergy relief, but it works well on these symptoms. It even reduces some of the "puff" on my lower lid, and I think it’s because I am no longer rubbing my eyes in my sleep. Elastat (which most people rave about) only worked "OK" by comparison. Caveat: Optivar tastes really nasty for a very long time as it drains down the throat. Need something to kill your appetite? You’ve found it.

I can hardly wait to see the specialist on Thursday … I am SO looking forward to getting this resolved. I feel fine in all other areas now (even the B-12 problem seems to be in the process of remediating itself), except my eyes are driving me crazy!

Hugs to all —

Melissa
Austin, TX

[belldandy112]

in reply to: Graves Opthalmopathy #1072650

Another question to those who might be reading this thread (and thanks, Ski, to your very thorough post, BTW) …

Has anyone had only eyelid swelling (upper and lower lids) and eye strain — but without compression of the optic nerve, dry eyes, or any kind of noticeable protrusion? I recently had a CT scan, and everything was within normal range. In fact, that I had no visual opth. difficulties during my first "hot" phase made this disease difficult to diagnose. TH levels were quite literally the last thing that were run.

I am just wondering if this is the beginning of bigger problems with my eyes, and if swelling is typically how it first starts?

Melissa
Austin, TX

[belldandy112]

in reply to: My Daughter’s Weight Gain #1072739

Gus —

Gosh … it’s so hard to comment to this, because I have found to maintain a weight at which I don’t look like a victim of starvation. Before I was diagnosed with Graves. I had what you might consider "healthy" eating habits — a lot of salads, broiled meats, very little sugar … post-diagnosis, I was shoveling in anything that couldn’t get away from me first. I’m 5’3" and typically weight 115-120, most of which is muscle (I’m also extremely athletic). When out of remission, I quickly drop down to about 89. Given the choice, I think that I’d rather battle extra pounds. Gaunt is not only unattractive, once I got down to that weight, I had difficulty walking (no padding on my feet).

When finding a support group, you make all kinds of friends, yes? I have one gal pal with Hashimoto’s. She had great success with the raw food diet and swears by it. Because I’m curious, I went to Whole Foods and tried a plate of the stuff. In a few words: Ugh, ugh, and ugh. It’s basically mulched-up salad stuff with a few nuts and soy product tossed in to make it hold a shape. But she looks great, and, at the same height as I, is the same weight (115). It really did work for her, although I’m not sure if anyone could endure this diet over time. She’s a very motivated woman, as she’s a yoga instructor and has to look good for her job. My motivation to stay on this diet would be exactly zero after about the first day. (If there were a little "nauseated" emoticon, I’d put it right here.)

I would definitely advise a dietary consultation (I did that too, when trying to gain weight in a healthy way) and perhaps even a consultation with a personal trainer who is also a physical therapist (did that, too). Regular trainers who don’t understand the problems Graves patients face are unable to safely guide them through a routine that is conducive to their particular goal. A good sports medicine clinic should be able to give your daughter a referral. I believe that there is a way to obtain any goal — sure, it might take quite a bit more effort. But it can be done.

Have a good day, everyone! ” title=”Smile” />

Melissa
Austin, TX

[belldandy112]

in reply to: Graves’ Disease – Tips & Tricks for hair/skin/mental health #1075252

The single most useful tip I would give would be this: Exercise, daily, as much as possible. Even if it’s just walking or doing relaxation yoga. This has made every bit of difference.

I run two miles every day. If it’s wet out, I get on the elliptical machines at the gym or the treadmill for 30 minutes. Everyone has his or her favorite form of exercise — mine is boxing. So I put in a good nine rounds with the timer and then go to floor work. I also go to yoga classes and have recently taken a couple of pilates classes, although this activity still mystifies me, and I’m not really sure what it does, hmm … I probably drink about a gallon of water every afternoon.

I was quite miserable — in great pain (hips, knees, ankles, etc.) before I started running. Glucosamine really works for me, too, and I’d recommend it for anyone who runs, jogs, or does any impact work. Sub-c B-12 has also made my life a lot easier — I feel more alert, but not "amped" in a too-much-caffeine way.

HTH some —

Melissa
(Austin, TX)

[belldandy112]

in reply to: Desperately need advice #1072693

Lin,

My endo is also pushing for this procedure. I flat-out told him N-O, No.

I have not met or known a single person who has had good success with this treatment. When I was making a plane ticket reservation, by happenstance, I ended up talking to a woman who had radioactive treatment done — she told me that she was one step away from filing for disability. Synthroid DOES NOT WORK FOR EVERYONE. A friend who has hypothyroidism had to go to a more costly medication because Synthroid didn’t work for her either.

I have, however, known several people who remain on low doses of M. for their entire lives with little to no problems. There are a couple of ladies in my church who weren’t even advised to have this procedure.

When my father went in after his heart stint (sp?), he was conned into open-heart surgery that would purportedly prolong his life — instead, it put him in a wheelchair, because he stroked on the table. RULE: Doctors will push the most expensive procedure possible, because that’s where they make their money. Keeping us on drug therapy doesn’t line their pockets the same way as a major surgery or radioactive treatment would.

I go by the addage, "If it ain’t broke, don’t fix it." People with Graves were treated with medication for the duration of their lives a long time before radioactive treatment was a glimmer in anyone’s eye. If it still works for most people, that’s what I am sticking with, too.

Regards,

Melissa
(Austin, TX)

P.S. By the way, I am new here — glad to meet everyone! ” title=”Smile” />

[belldandy112]

in reply to: Graves Opthalmopathy #1072648

Hi,

I’m sure this is of no consolation, but the two of us are in the same boat. My opthomalogist has tried drop treatment for my eyes, but to minimal avail (hey, at least the drops help out with my allergies). She referred me to a specialist for steroid treatment — there really is no other way for me. My swelling is causing eye strain, and although I am not working, I am interviewing. I know that there is no way I could hold my eyelids up all day long to do desk work. Not to mention, I have had potential employers ask me about my eyes … not a good sign.

I know it’s a daunting prospect, but steroids might be the only way to go. I am personally willing to risk it to get rid of this problem. I took copious steroids for my allergies (hives) in the past and have suffered no side-effects because of steroid use. And I’m sure that I was taking a lot more steroids back then than I am now. My only concern is that I’m a hobbyist boxer, so I have considerable muscle mass (for a woman). I don’t want to end up looking like Sylvester Stallone in "Rocky!" ” title=”Smile” />

If you want to message me, please feel free, and I’ll keep you updated. After months of suffering, I’m ready to do whatever it takes to look normal again. Good luck, and chin up — we’ll beat this! ” title=”Smile” />

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