Grave's disease and LDN

[Guest guest]

Hi

Debbie,

I’m

Leon’s wife and just wanted to respond to your questions below. You

wrote:

A couple

questions if you don't mind:

1.

What

dose did your wife start on and how long before she saw a difference? Did

her antibodies go down quickly or just symptoms?

I started on 3. I tried to increase at a later

time but the most I’ve been able to tolerate is 3.5. When I take

more, I can’t sleep at night and have just decided that 3 does me just

fine. My body feels very comfortable with 3. Also, for anyone out

there who can’t sleep at night or is sleeping very restless, they need to

decrease the dose. I’ve been on it now for a year and some

months. I started seeing a difference with my eyes within a few

months. This disease started with one eye first and it started with an

automatic double vision. Then it started to totally protrude and became

totally disfigured. I’ve been wearing an eye patch. All

this time my thyroid was normal but I had a very high antibody count. I

also went through a very scary period where I was threatened with blindness but

my thyroid started going up and UCLA put me on PTU and that helped the eye

swelling a bit, thank god for UCLA wanted to put me on immune suppressant

medication which I wasn’t too thrilled about. About 2 years later,

thinking I’m almost done with this disease for they say in 2-3 years it’ll

go into remission, the disease started in my other eye. I was devastated to

say the least. Then my husband heard about LDN. I actually went to

my regular internist with all the info we could gather on how this drug is

being used to treat auto-immune diseases and begged him to please give us a

prescription for I didn’t have any other hope to save my eye. Sort

of reluctantly, he gave it to me. About 2 months later, the disease

totally slowed down. I still had high antibodies and I felt that LDN was

just barely able to hold it back, but it did. A year later, my good eye

almost looks totally normal and UCLA has been keeping track of all of its

stages with both eyes. They are now very impressed. Even my bad eye

has improved. Now UCLA or my other doc freely prescribe it to me with no

questions asked. I have gotten to love LDN and it’s become my

security blanket.

2.

Is

she on the highest dose yet (4.5)?

I responded above.

3.

Do

you know if this is a forever thing or just until remission?

It’s a forever thing.

This disease can come back years later. After I do a bunch of surgeries, I

don’t want to go through this again.

4.

How

did you get your doctor to prescribe it? Did you have any backup doc you

provided or did you do this all on your own?

Answered above.

Thanks

so much for responding. I am very happy for your wife. I hope she

continues to stay stable and go into remission.

It’s

our pleasure Debbie. Good luck to you and take LDN with confidence.

It’s the only hope we have until they come up with a cure for autoimmune

problems.

Our

best to you.

From: M & D Bolde

[mailto:MDBolde@...]

Sent: Saturday, February 06, 2010 10:32 AM

leon

Subject: Re: [low dose naltrexone] Grave's disease and LDN

Hi

Leon,

Thank

you for responding to my post. I really appreciate it. My Grave's

eye disease has affected my right eye initially and now my left eye. I

have retinitis pigementosa (another eye disease), but my retina specialist

never understood why I said my right eye was getting worse. Now after

reading your email, I am convinced it is optic nerve damage. I have lots

of blurred spots within my vision making it virtually unusable. Is this

what your wife is experiencing?

I

had RAI so I am struggling right now getting to the right thyroid level. (Short

story: I was onArmour thyroid which really messed me up and that is when

I went out of remission). My TSH is very low (.021), even though my FT3

(3.0) and FT4 (1.22) are in the normal range. It has to do with

the TSI antibodies binding to TSH receptor cells. Anyway, my doctor does

not complete buy in to this but has agreed to let me stay on higher thyroid

dose until my antibodies go down. I encourage you and your wife to join

the Graves Support group on if you haven't already. Val is the

moderator and very knowledgeable.

A

couple questions if you don't mind:

1.

What dose did your wife start on and how long before she saw a

difference? Did her antibodies go down quickly or just symptoms?

2.

Is she on the highest dose yet (4.5)?

3.

Do you know if this is a forever thing or just until remission?

4.

How did you get your doctor to prescribe it? Did you have any backup doc

you provided or did you do this all on your own?

Thanks

so much for responding. I am very happy for your wife. I hope she

continues to stay stable and go into remission.

Debbie

-----

Original Message -----

From: leon

'dab427'

Sent: Saturday, February

06, 2010 9:10 AM

Subject: RE:

[low dose naltrexone] Grave's disease and LDN

Hello Debbie,

My wife has grave disease and she also has thyroid eye

disease. One of her eyes is unusable, the other eye started to going thru

changes and she got on LDN. She claims that LDN halted the progression of the

secondary eye. She thinks that LDN helped to halt the deterioration in the

second eye and has been on LDN for a year. We did a TSI test after a few months

on LDN but it was still elevated . It wont hurt to take LDN to see if it would

help,I take it as a preventive measure against disease since I believe it helps

the immune system.

leon

From:

low dose naltrexone [mailto:low dose naltrexone ] On

Behalf Of dab427

Sent: Friday, February 05, 2010 1:33 PM

low dose naltrexone

Subject: [low dose naltrexone] Grave's disease and LDN

Hi, I am new to the group. I was diagnosed with

Grave's thyroid disease in 2004 and had Radioactive Iodine shortly thereafter.

I believe that I went into remission by 2006 (no labs on antibodies to prove

it, just symptoms were gone), but since have begun experiencing thyroid eye

disease. As of 2008, my TSI, TPO and Trab antibodies were ALL elevated. They

have gone down over the past two years but I am not in remission yet.

I desperately need to find a solution for reducing my antibodies because my

vision is being effected by the Thyroid eye disease. My intraocular pressure

has risen in both eyes,enough to cause blurring and fuzzy vision.

Can anyone point me in the direction of some information on the use of LDN in

Grave's or can anyone speak personally about using it for thyroid disease? How

quickly does it work and is this therapy a forever thing, or just until you go

into remission? I have ready lots of posts on other autoimmune diseases, but

have seen very little on Grave's dissease.

Thank you in advance.

Debbie