RE: LDN and Grave's disease?

[Guest guest]

Hi Jeni,

There's a lot of interest in LDN on the Graves' boards, and some of us are

taking it for other " stages " --I'm taking it for a hypothyroid stage I've

been in after stopping PTU, and at least one person is taking it after

having had radioactive thyroid ablation. A woman on Mediboard took it some

years back along with tapazole and has had a long-lasting remission since.

Hopefully if any hypers here are trying it they'll speak up. It seems to

have had a fast and positive effect on my Graves' blocking antibodies and

the remnants of my thyroid eye disease. I'll get thyroid level and antibody

labs down the line, but so far can just say I dropped my thyroid replacement

and am feeling euthyroid.

Best wishes,

B., Graves' and thyroid eye disease 2002, off PTU 2005; 60 mcg T4 and

10 mcg T3 2005-2007

________________________________

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of Jenifer Mische

Sent: Saturday, January 19, 2008 4:36 PM

low dose naltrexone

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

Hi everyone,

I was just diagnosed with Grave's in December. I am currently taking Zoloft

for the mood swings, and 50mgs of PTU. I am hoping to find an alternative to

the standard protocol. Has anyone used LDN for Grave's?

Warm regards,

Jeni

[Guest guest]

-

Thank you for the post. I have seen some information on the Graves board. By

euthyriod

do you mean a return to your previous health? I have terrible brain fog,I start

classes next

week and I am terrified.

Also do you use the cream form or the pill?

I have a ton of questions- most I can't remember.

My endo was resistant to LDN, but I think that I could get my GP to write a

prescription.

How did stopping PTU send you into hypo?

I am still so new to all of this and I don't understand the process. I know

that Elaine

wrote a must have reference. I have to order it, as I couldn't find it at

the

bookstore.

Warm regards,

Jeni

- In low dose naltrexone , " B. " <@...> wrote:

>

> Hi Jeni,

>

> There's a lot of interest in LDN on the Graves' boards, and some of us are

> taking it for other " stages " --I'm taking it for a hypothyroid stage I've

> been in after stopping PTU, and at least one person is taking it after

> having had radioactive thyroid ablation. A woman on Mediboard took it some

> years back along with tapazole and has had a long-lasting remission since.

>

> Hopefully if any hypers here are trying it they'll speak up. It seems to

> have had a fast and positive effect on my Graves' blocking antibodies and

> the remnants of my thyroid eye disease. I'll get thyroid level and antibody

> labs down the line, but so far can just say I dropped my thyroid replacement

> and am feeling euthyroid.

>

> Best wishes,

> B., Graves' and thyroid eye disease 2002, off PTU 2005; 60 mcg T4 and

> 10 mcg T3 2005-2007

> ________________________________

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of Jenifer Mische

> Sent: Saturday, January 19, 2008 4:36 PM

> low dose naltrexone

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

>

> Hi everyone,

>

> I was just diagnosed with Grave's in December. I am currently taking Zoloft

> for the mood swings, and 50mgs of PTU. I am hoping to find an alternative to

> the standard protocol. Has anyone used LDN for Grave's?

>

> Warm regards,

> Jeni

>

[Guest guest]

Hi Jeni,

I also saw your post over at Graves' Support but didn't have much to add.

We've also been talking about LDN at Mediboard.com.

Yes, Graves' disease involves auto-antibodies that block the TSH receptors.

Some can make you hyperthyroid, and others make you hypothyroid. I was

originally hyper and after taking PTU a while became hypo, where I stayed.

LDN seems to have quickly decreased antibody production so I'm back to

normal thyroid levels (based on lack of symptoms and a normal heart rate,

whereas my heart rate gets slow when I'm hypo and fast when I'm hyper). It

also seems to have fixed my remaining thyroid eye disease symptoms as well

as eczema and arthritis (I'm 53).

I've been buying 10 mg LDN pills from an overseas pharmacy (Antiaging

Systems in the UK) and dissolving them in water, to take the starting dose

of LDN, about 1.5 mg. I hope to get my alternative MD onboard and move to a

compounded form. I also have starting antibody labs and will test again in

3-4 months, and get thyroid levels checked before then.

If you're having brain fog you may need to decrease your PTU dose as that's

often a hypothyroid symptom. The way to tell is to test your FT4 and FT3 and

make sure they're high enough in the normal range for you. TSH will stay

artificially low as the antibodies affect it, something many doctors don't

know, which leads them to overmedicate us.

Elaine wrote " Graves' Disease: A Practical Guide, " but she also has

lots of info available at suite101.com (search under and Graves'), and

there's also good info at the thyroid discussion group at Mediboard.com in

the Thyroid101 thread and in the wiki. Elaine advises Graves' Support and

Mediboard.com and is very knowledgeable. Even without LDN, remission is very

common, but LDN may be a big help.

Best wishes,

________________________________

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of jenimische

Sent: Saturday, January 19, 2008 5:46 PM

low dose naltrexone@...: [low dose naltrexone] Re: LDN

and Grave's disease?

-

Thank you for the post. I have seen some information on the Graves board. By

euthyriod

do you mean a return to your previous health? I have terrible brain fog,I

start classes next

week and I am terrified.

Also do you use the cream form or the pill?

I have a ton of questions- most I can't remember.

My endo was resistant to LDN, but I think that I could get my GP to write a

prescription.

How did stopping PTU send you into hypo?

I am still so new to all of this and I don't understand the process. I know

that Elaine

wrote a must have reference. I have to order it, as I couldn't find it

at the

bookstore.

Warm regards,

Jeni

-

[Guest guest]

Hi ,

I have Graves' Disease and Graves' Ophthomopathy. I've been treating it with

PTU since dx

(6/06). I plan to start LDN therapy after thyoidectomy to address the eye

disease.

I don't know of anyone in an active hyper phase who has used LDN, successfully

or not,

and I've looked all over the internet. If you're out there, speak up now,

people:)

My endocrinologist, who is a professor and very much up on current research, had

not

heard of LDN; he is willing to prescribe and monitor the therapy via blood tests

(keeping

an eye out for liver levels especially) but I'm sure would never do that while

I'm hyper.

May I ask why you're looking at alternative treatments? ATD therapy has been

pretty

successful for the last 50 years, world wide. The trick is frequent blood test

to adjust

dosage based on the amount of thyroid hormone your body is creating.

Best

a

>

> Hi everyone,

>

>

> I was just diagnosed with Grave's in December. I am currently taking Zoloft

for the

mood swings, and 50mgs of PTU. I am hoping to find an alternative to the

standard

protocol. Has anyone used LDN for Grave's?

>

>

> Warm regards,

> Jeni

>

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make your home page.

> http://www./r/hs

>

[Guest guest]

I'm still hyper (FT4 still above range/TSH nonexistant) with Grave's

disease and I'm currently on no treatment (waiting for a referal to

another endo) I had side effects on both ATDs so if LDN doesn't work

I'm going for thyroidectomy, which I truly don't want. I ordered

from the same place did. We have a pretty good local

compounding pharmacy but the doctors around here are just so

terrible that I couldn't get a prescription (case in point family

nurse practitioner gave my husband a script for Ultram rather than

the thyroid replacement he was asking for). Unfortunately I have

never had thyroid antibodies tested, but with my family history of

autoimune disorders and many years of undiagnoised symptoms there is

no doubt it is autoimmune.

My husband suffers from debilitating fatigue and joint/muscle pain.

His thyroid has slight swelling and is definately hard. His TSH was

4.1 and the upper limit was 4.2 . He was refused thyroid antibody

testing and told he needed an antidepressant. Although we have no

diagnosis of Hashimotos thyroiditis, He will be trying the LDN as

well because he has no other hope right now.

Kat

[Guest guest]

HI a,

I guess the reason that I am looking for alternative treatments is that I feel

that the

Graves, for me, goes beyond just the thyroid. I just feel that as Graves is

an autoimmune

disease, there must be other systems in my body that are in jeopardy. I realize

as I read

through other peoples Graves stories that I have probably had this since

puberty. I am 36,

I've had 4 miscarriages( followed by 2 healthy boys), I have suffered mild

depression and

eating disorder issues off and on for 22 years. I just have a gut feeling that

they are all

related.

I am on PTU(50 mg) and Zolfot presently. My FT3, FT4 and TSH are all in

normal range

now, after only two weeks. I am afraid that now I am headed for hypo. I spent

all of last

week taking 3 hour naps at 9 am. I was lucky that I didn't have to work that

week. I know

that many people live very happy and successful lives on ATDs. I am also

becoming more

aware of a large population of people who suffer huge disruptions in their lives

because of

the teeter-tottering between hypo and hyper.

Beyond that my chances of remission with the standard treatment are low. Both

of my

parents, and at least one sibling have thyroid problems. Therefore LDN seems as

if it

would be a viable option. My hope was to reach out to others for some guidance.

Thanks for your interest. I look forward to any help that is out there.

Warm regards.

Jeni

> >

> > Hi everyone,

> >

> >

> > I was just diagnosed with Grave's in December. I am currently taking Zoloft

for the

> mood swings, and 50mgs of PTU. I am hoping to find an alternative to the

standard

> protocol. Has anyone used LDN for Grave's?

> >

> >

> > Warm regards,

> > Jeni

> >

> >

> >

> >

>

________________________________________________________________________________\

____

> > Never miss a thing. Make your home page.

> > http://www./r/hs

> >

>

[Guest guest]

>

Hi Kat,

If you would like to have some testing done but your doctor will not

order the tests you want, I understand that you can get testing done

at http://healthcheckusa.com/ without a doctor's order. I've not

used this service before but folks on the thyroid forum have talked

about it.

Also, Life Extension offers blood testing services too.

http://www.lef.org/bloodtest/ Again, I've not used this service either.

I think the antibodies test is good information -- especially if you

decide to try LDN on your own -- but I would have all the thyroid

related tests done as a benchmark.

Jann