Re: Eyebrows and Eyelashes: Hypo or hyper?

[Guest guest]

Hi :

Thanks for your posting. Here are a few comments

that come to my mind right now.

As for you...since your eyes are not getting any

worst...DO NOT ALLOW ANY MD TO DO ANY SURGERY.

My Neuro Opthomologist is great...and he advises

me that his experience is that well over 50% of

people with TED end up with the swelling going

down (with time....2 to 5 years) without surgery

or prednisone or anything else. That goes the

same for double vision and inflamation also...it

often goes away all by itself with time.

The only thing to do is treat your eyes as best

you can...lots of lubrication with artificial

tears during the day & Genteal brand eye gel when

you go to sleep. And exercise your eyes...start

slowly, but do it...it helps.

The flax seed oil is essential & for me, it is

a *miracle*. I am taking the liquid because it is

more powerful....you are supposed to take ONE

TABLESPOON PER 100 # OF BODY WEIGHT. I am taking

1 tablespoon just before breakfast & then 1 teaspoon

full of the flax seed oil in the evening. Always

take it right before you eat something. Or mix it

with yogurt, over vegetables, in a smoothie, or

however you want. (I don't mind the taste after

4 weeks).

My eyes are at least 50% better since the flax seed

oil. I had relief within ONE day...ever since I got

the right amount...the tablespoon for 100# body

weight.

As for me, I have had a great Neuro Opthomologist.

He even last week told me to go out and buy a book

to read called " Graves Disease.... " ....Elaine's

book!! (I thought I told him about it, but I guess

I did not...anyway, my Neuro Opth says Elaine's book

is excellent & it helped him keep up with new

information.

I now have referrals to 3 Endos. The one I am going

to try is an Endo who works directly with my Neuro

Opthomologist. (He just told me of her when I saw

him last week.) Reason...I told him that I had a

TSI & It was really high. My Neuro Opth said " high?,

so what is your Endo doing to lower it for you? I then

told him I didn't have any Endo at this time, and he

gave me a recommendation. And the only bad news is

that I have to wait **2 months** for the initial Endo

appointment. That will not be until August 5th.

But somehow during the time before then, I will get

a test with fresh #s for fT3, fT4, TSH & TSI.

And as for me...my major problem is that I just must

have the help of a good Endo so that I can get tests

about every 6 weeks...to make sure I am taking the

proper amount of PTU so that I'm not in the Hyper

range and also so that I'm not in the Hypo range. It

may take me a long time...but I am going to hold out

and try for remission, even if it takes years. I'm

not going to let anyone cut or radiate my eyes or

my thyroid. (I guess I'm stubborn.)

As for my eyebrows & especially almost non-existent

eyelashes...I believe that came on during a period

when I was very Hypo. You see, I have bounced back

and forth. Partly my fault that I didn't work harder

to get a good Endo earlier...but I was being told over

and over that I was hyper no matter how I felt so I

think I was taking too much (and other times too

little) of the PTU. Now I am taking 50mg. every 8

hours " exactly " and my eyes are feeling better.

(Note...I just got over a week's flu & my eyes felt

awful during that...with lots of problems. But I

am back to feeling better now, finally.)

Back to you...don't let the doctors cut until & unless

you have (a) gone 3 to 5 years & it is *Serious*. There's

no need for immediate surgery unless the optical nerve

is in jeapardy or is a problem...or unless your double

vision was so bad that you can hardly function. **Let

your body have time**

Best to everyone,

Ron

>

> Hi Ron,

>

> There may be a more complicated answer to why you're hyper and

losing brow and lash hair. I wonder why it's happening around your

eyes but not on your head (although thank goodness for small favors).

On the other hand, people seem to vary in terms of their symptoms, and

some people have symptoms opposite to what's predicted. Taking a

nutritional route certainly can't hurt.

>

> I saw the local Graves' opth. specialist for the second time today;

three months since my first visit to him but 10 months since starting

PTU. My " moderate " TED (no pressure on the nerve) is no worse than

last time, which was great news. (Pollen here in the Northeast is sure

irritating them, though.)

>

> If there's no change in another three months (and he says

improvement is out of the question), the doc suggests surgery for the

swelling, lid lag, etc. I'm ambivalent about the cosmetic aspect but

would like to stop feeling like there's sand in my eyes. (And I agree

with you, on the list of life's little injustices, it does seem unfair

to have to deal with a disorder that makes you hyper, physically weak,

way too emotional, and then on top of that makes your eyes look and

work oddly!)

>

> The specialist s

ays I lack the congestion that the radiation treatment provides.

Despite being the local expert, he sounds out of touch with current

research and much less informed than Elaine or some of the others on

the board, so I doubt I'd let him do the surgery. (When he asked if my

endo had discussed RAI with me I was tempted to ask if he knew the

statistics about RAI worsening TED but didn't have the energy.) As

Elaine suggested following my first visit, it would be fun to go back

with the swelling resolved, but I'm definitely not there yet; too much

stress in my life right now for me to expect remission soon.

>

> If I remember right, you had finally found a doctor to work with? I

hope you can get your levels adjusted soon, that should help. As for

me, I have a wonderful endo (if less informed than this group) and

count her (and my auto mechanic) among the most valued people in my life.

>

> Best wishes,

>

>

>

>

>

>

>