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Thanks Judy

How long did the situation take to resolve itself?/

Thanks

Tronicsworld

>

> That happened to me, too. The pharmacist explained to me that even if I

> thought I was sleeping ok, I actually was not getting the deep level

sleep I

> needed. This caused the afternoon exhaustion. It went away when my

body

> adjusted. I don¹t have the same health problem you have, but maybe this

> will help anyhow.

>

> Judy

>

> Hashimoto's

> Posted by: " tronicsworld45 " tronicsworld45@... tronicsworld45

> Mon Apr 28, 2008 4:36 pm (PDT)

>

> Hi all,

>

> I am on the 4.5 dose of LDN now. One problem that is I am getting

> very fatigued in the mid afternoon. I don't think its related to the

LDN.

> Any suggestions on what I should have checked??

>

> Thanks

>

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It took me quite a while. I was expecting it to be just a few days based on posts I saw here, but I’d say it was several weeks at the very least. The afternoon exhaustion got better after I understood what it was about and started taking some naps instead of fighting it, but the sense of not sleeping well or not sleeping through the night went on for weeks or maybe even a couple of months. It DID go away and now I sleep great again. It’s definitely worth sticking it out.

I tried some sleep aids (5htp, melatonin) but in the end, nothing worked well for me and I just had to go with the flow until the problem subsided.

Judy

Hashimoto's

Posted by: " tronicsworld45 " tronicsworld45@... tronicsworld45

Tue Apr 29, 2008 6:48 pm (PDT)

Thanks Judy

How long did the situation take to resolve itself?/

Thanks

Tronicsworld

>

> That happened to me, too. The pharmacist explained to me that even if I

> thought I was sleeping ok, I actually was not getting the deep level

sleep I

> needed. This caused the afternoon exhaustion

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Guest guest

>

> Hi all,

>

> I am on LDN at the 4.5mg dose.....I had read that was designed for

> someone weighing 150lbs.

>

> I am six two and 225....should I move that dosage up to 6.00mg.

>

> Many thanks.

>

> Tronicsworld

>

==========

Dr. Bihari told me and my mom that he would recommend the dose be

upped over 4.5mg if someone were above 350 or 400 pounds.

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Guest guest

> >

> > Hi all,

> >

> > I am on LDN at the 4.5mg dose.....I had read that was designed for

> > someone weighing 150lbs.

> >

> > I am six two and 225....should I move that dosage up to 6.00mg.

> >

> > Many thanks.

> >

> > Tronicsworld

> >

> ==========

>

> Dr. Bihari told me and my mom that he would recommend the dose be

> upped over 4.5mg if someone were above 350 or 400 pounds.

>

TY

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  • 6 months later...

My husband has hashi's and has been taking 50 mgs for 1 year. His antibodies are gone! Most here have had them reduced or disappear. Yes hashi's is permanent but can be gotten under control with Vit C, selenium, celtic salt and iodine.

Steph

Hashimoto's

Hi,Just found out I have Hashimoto's and am hypothyroid. I've been taking Iodoral (25 mg/day) for about 3-4 months. Does Iodoral help Hashimoto's? Would there be any negative effects from taking it with Hashimoto's? Is Hashimoto's a permanent disease or can it ever be cured?Thanks,

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That is very encouraging and just what I hoped to hear. I will

continue taking the iodine, plus I'm also taking Vitamin C with heme

iron to get my ferritin up, plus I also use only sea salt, and am

taking 100 mg selenium per day with my Iodoral.

Thank you, Steph.

>

> My husband has hashi's and has been taking 50 mgs for 1 year. His

antibodies are gone! Most here have had them reduced or disappear.

Yes hashi's is permanent but can be gotten under control with Vit C,

selenium, celtic salt and iodine.

>

> Steph

>

> Hashimoto's

>

>

> Hi,

>

> Just found out I have Hashimoto's and am hypothyroid. I've been

> taking Iodoral (25 mg/day) for about 3-4 months. Does Iodoral

help

> Hashimoto's? Would there be any negative effects from taking it

with

> Hashimoto's? Is Hashimoto's a permanent disease or can it ever

be

> cured?

>

> Thanks,

>

>

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  • 5 months later...
Guest guest

>

> Let me reword my post and see if I can get a response this time.

>

> Has anyone been able to reduce or end thyroid hormone while on LDN? Or is

this just strictly for symptom reduction?

>

Hi ,

Yes my wife has DM and Hashimotos. She is only taking 2 mg of LDN every night

(for about the last 10 weeks), and what a huge difference in her thyroid

function. She has now dropped her synthroid - Eltroxin (from .4 to .3mg per

day)with further decreases in sight, as she is now hyper thyroid. We are hoping

to get her off Eltroxine, as she slowly titrates up to 4.5 mg of LDN nightly,

which will take several months.

Jim

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Guest guest

>

> Let me reword my post and see if I can get a response this time.

>

> Has anyone been able to reduce or end thyroid hormone while on LDN? Or is

this just strictly for symptom reduction?

>

Hi ,

Yes my wife has DM and Hashimotos. She is only taking 2 mg of LDN every night

(for about the last 10 weeks), and what a huge difference in her thyroid

function. She has now dropped her synthroid - Eltroxin (from .4 to .3mg per

day)with further decreases in sight, as she is now hyper thyroid. We are hoping

to get her off Eltroxine, as she slowly titrates up to 4.5 mg of LDN nightly,

which will take several months.

Jim

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Guest guest

Go this website, click on Community. There's a forum where they discuss thyroid

issues and some use LDN.

http://www.ahsta.com/Home/tabid/90/Default.aspx

This a blog by someone with Hashimoto's thyroiditis and is treating it with LDN:

http://forums.realthyroidhelp.com/viewtopic.php?f=11 & t=6277

>

> Let me reword my post and see if I can get a response this time.

>

> Has anyone been able to reduce or end thyroid hormone while on LDN? Or is

this just strictly for symptom reduction?

>

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Guest guest

you must go through this part of the data base of ldn.

there are few with hashimoto.

https://cancer-research.dabbledb.com/page/other/bmdUfoFr

there is another part to ldn which is never discussed.once you have been through

a long period of stress.auto-immune is stress on the body,the productin of

endorphines will never be the same.i believe that even when the disease is over

there is still something missing whicv the ldn can restore.

>

> Let me reword my post and see if I can get a response this time.

>

> Has anyone been able to reduce or end thyroid hormone while on LDN? Or is

this just strictly for symptom reduction?

>

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Guest guest

woooooohoooo connie...so good to hear how they shrunk!!!!!!!!!!!!!!!!!!!!!!!From: Connie <chillyconconnie@...>Subject: [low dose naltrexone] Hashimoto'slow dose naltrexone Date: Tuesday, May 19, 2009, 8:24 PM

,

I take LDN for Hashimoto's and CFS; I also have diabetes & hypertension.

I was not able to reduce or stop thyroid hormone. I've had hashi's for at least ten years, so by now my thyroid is unable to make its own hormone.

However, I've had several symptom improvements including bone pain all gone; muscle pain about 95% gone; fatigue about 40% improved (has been long, gradual improvement over the 6 months I've been on LDN). Also, I have comparison CT scans on my neck that showed in 2003 & 2007 I had several enlarged lymph nodes, some of which were nearly 3 centimeters at largest diameter - they said at that time they could not rule out malignancy, but I refused a needle biopsy. And I had "chain nodules throughout" thyroid. There was "little difference" between the 2003 and 2007 CT scans (4 yrs. apart).

Just last week I had a new CT scan (2 yrs. after the last scan, and 6 months after starting LDN) and now it says several "sub-centimeter lymph nodes" & "no discrete nodules." So the 3-centimeter nodes have shrunk to less than a centimeter & the chain nodules are gone.

I hope this helps you.

Best,

Connie

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  • 6 months later...

Hi there. From recent experience with the total removal of my thyroid gland

because of Hashimoto's I can tell you how it normally works. The symptoms of

Hashi's are these and I can tell you from my own experience.

Over the past 25 years, when I first had chronic thyroiditis (before they really

knew much about Hashi's), I have went at least 8 - 10 times hyperthyroid. It's

not typical to have only hypothyroid with Hashi's as your antibodies tend to

beat up the thyroid each time you go hyper. Each time I went hyper, I would

lose between 60 and 90 pounds, a very drastic weight loss, no matter what I ate.

I would have persistent diarrhea, some times it would come on while I was

driving, it would happen in my car, some times in a store, I just could never

tell. Then, I started having trouble with my vision. Finally, in 2005, my endo

tested my antibodies and normal levels are 0-60, mine were over 20,000. When I

went in for my surgery this July, my surgeon opened up my neck and the gland was

completely black, with ink blue coloring on the interior of the gland. The

antibodies had totally destroyed it - I had no vascularity in the gland, and it

was so inflamed that

the normal incision for a total thyroidectomy is normally 2.5 inches, my gland

was so large that it was wrapped around the right side of my windpipe and so

inflamed that my incision was straight across my neck because he needed a larger

opening to get the gland out. In addition, because my parathyorids were so

imbedded in the mess inside, he had to use teeny tiny cm. incisions in order to

save the parathyroids, otherwise, they would have had to implant them in another

place in my body such as my arms. Fortunately, and to his surprise, my

parathyroids had not even been attacked by my antibodies. It's a very weird

disease to have, but it's chronic immune disease that does need treatment.

Finally, after 25 years, I had developed a 2 inch mass on the right lobe of the

gland, and that's when I started having trouble swallowing. I would literally

choke on my food, and then have an acid reflux type of feeling in the small of

my throat right at the base

of the gland. Thus, the end of the cycle for me. Finally, once your thyroid

has put out so much thyroid hormone and the antibodies kill the gland, you will

become hypo, so if you have had severe weight loss in the past many times over

and are now hypo, this would definitely be Hashi's and I would suggest getting

your antibodies checked, as this will be the confirming factor for you.

Hope this helps. I had a horrible recovery and would not with a TT on anyone!

________________________________

From: MC28 <cumocumocumo@...>

HYPO Listserve <hypothyroidism >

Sent: Tue, November 24, 2009 9:18:38 AM

Subject: Hashimoto's

Hi everyone,

A couple of years ago I was diagnosed with hypothyroidism. About 8 months after

the diagnosis, my TSH levels were within range and i felt a lot better. A

couple of months later i had another TSH test and my levels were still within a

decent range. Now, fas-tforwarding to about 2 months ago, my levels have gone

out of whack and i have felt like crap of late (sluggish, irritable). I

remember back to an ultrasound of my thyroid that the Dr. performed and said

that there was a little inflamation in the thyroid. For some reason he didn't

think this was a big deal though I had my reservations. Since my levels are

getting worse despite treatment, and since there is the apparent inflammation,

is it possible that I have Hashimoto's? The gal who takes my blood seems to

think it could be a possibility but the fact that the Dr. has yet to consider it

makes me wonder.

If any of you have information on this i would appreciate it.

Thanks!

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I have been treated for hypothyroid for about 12 years. My mother is hypo

and so are most of the women in her family. My doctor never mentioned

hashimotos until I said that my mom had it and then the Dr. said oh yes you

have it too! It is a very common cause of hygothyroid. I would just ask

your dr. to test the antibodies. If you have antibodies then you have the

autoimmune disease Hashimotos. I have stayed stable on my meds. I do feel

cold and tired a lot. I am pregnant with my 4th child and have to be

monitored very closely bc my levels change a lot as the pregnancy

progresses. Find a good endocronologist who listens to your symptoms and

how you really feel as well as your levels. Good luck and take care!

Sara

..

On Tue, Nov 24, 2009 at 10:34 PM, Kitzmiller <

legalsecretary2007@...> wrote:

>

>

> Hi there. From recent experience with the total removal of my thyroid gland

> because of Hashimoto's I can tell you how it normally works. The symptoms of

> Hashi's are these and I can tell you from my own experience.

>

> Over the past 25 years, when I first had chronic thyroiditis (before they

> really knew much about Hashi's), I have went at least 8 - 10 times

> hyperthyroid. It's not typical to have only hypothyroid with Hashi's as your

> antibodies tend to beat up the thyroid each time you go hyper. Each time I

> went hyper, I would lose between 60 and 90 pounds, a very drastic weight

> loss, no matter what I ate. I would have persistent diarrhea, some times it

> would come on while I was driving, it would happen in my car, some times in

> a store, I just could never tell. Then, I started having trouble with my

> vision. Finally, in 2005, my endo tested my antibodies and normal levels are

> 0-60, mine were over 20,000. When I went in for my surgery this July, my

> surgeon opened up my neck and the gland was completely black, with ink blue

> coloring on the interior of the gland. The antibodies had totally destroyed

> it - I had no vascularity in the gland, and it was so inflamed that

> the normal incision for a total thyroidectomy is normally 2.5 inches, my

> gland was so large that it was wrapped around the right side of my windpipe

> and so inflamed that my incision was straight across my neck because he

> needed a larger opening to get the gland out. In addition, because my

> parathyorids were so imbedded in the mess inside, he had to use teeny tiny

> cm. incisions in order to save the parathyroids, otherwise, they would have

> had to implant them in another place in my body such as my arms.

> Fortunately, and to his surprise, my parathyroids had not even been attacked

> by my antibodies. It's a very weird disease to have, but it's chronic immune

> disease that does need treatment. Finally, after 25 years, I had developed a

> 2 inch mass on the right lobe of the gland, and that's when I started having

> trouble swallowing. I would literally choke on my food, and then have an

> acid reflux type of feeling in the small of my throat right at the base

> of the gland. Thus, the end of the cycle for me. Finally, once your thyroid

> has put out so much thyroid hormone and the antibodies kill the gland, you

> will become hypo, so if you have had severe weight loss in the past many

> times over and are now hypo, this would definitely be Hashi's and I would

> suggest getting your antibodies checked, as this will be the confirming

> factor for you.

>

> Hope this helps. I had a horrible recovery and would not with a TT on

> anyone!

>

> ________________________________

> From: MC28 <cumocumocumo@... <cumocumocumo%40>>

> HYPO Listserve

<hypothyroidism <hypothyroidism%40>

> >

> Sent: Tue, November 24, 2009 9:18:38 AM

> Subject: Hashimoto's

>

>

> Hi everyone,

>

> A couple of years ago I was diagnosed with hypothyroidism. About 8 months

> after the diagnosis, my TSH levels were within range and i felt a lot

> better. A couple of months later i had another TSH test and my levels were

> still within a decent range. Now, fas-tforwarding to about 2 months ago, my

> levels have gone out of whack and i have felt like crap of late (sluggish,

> irritable). I remember back to an ultrasound of my thyroid that the Dr.

> performed and said that there was a little inflamation in the thyroid. For

> some reason he didn't think this was a big deal though I had my

> reservations. Since my levels are getting worse despite treatment, and since

> there is the apparent inflammation, is it possible that I have Hashimoto's?

> The gal who takes my blood seems to think it could be a possibility but the

> fact that the Dr. has yet to consider it makes me wonder.

>

> If any of you have information on this i would appreciate it.

>

> Thanks!

>

>

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My daughter has Graves and I have Hashi's. I'm curious why you had surgery

rather than the radioactive stuff to kill your thyroid gland. My daughter

will have to have one or the other in a couple years they said. They said

the radioactive stuff just goes directly to the gland and no side effects. So

that's why I'm curious. A friend of ours had the pill and was really happy

with doing that and now she's hypo. My poor daughter is gaining weight

since being on medication to get the thyroxine out of her body and so

sluggish.

In a message dated 11/24/2009 7:35:02 P.M. Pacific Standard Time,

legalsecretary2007@... writes:

Hi there. From recent experience with the total removal of my thyroid

gland because of Hashimoto's I can tell you how it normally works. The

symptoms of Hashi's are these and I can tell you from my own experience.

Over the past 25 years, when I first had chronic thyroiditis (before they

really knew much about Hashi's), I have went at least 8 - 10 times

hyperthyroid. It's not typical to have only hypothyroid with Hashi's as your

antibodies tend to beat up the thyroid each time you go hyper. Each time I

went

hyper, I would lose between 60 and 90 pounds, a very drastic weight loss,

no matter what I ate. I would have persistent diarrhea, some times it

would come on while I was driving, it would happen in my car, some times in a

store, I just could never tell. Then, I started having trouble with my

vision. Finally, in 2005, my endo tested my antibodies and normal levels are

0-60, mine were over 20,000. When I went in for my surgery this July, my

surgeon opened up my neck and the gland was completely black, with ink blue

coloring on the interior of the gland. The antibodies had totally destroyed

it - I had no vascularity in the gland, and it was so inflamed that

the normal incision for a total thyroidectomy is normally 2.5 inches, my

gland was so large that it was wrapped around the right side of my windpipe

and so inflamed that my incision was straight across my neck because he

needed a larger opening to get the gland out. In addition, because my

parathyorids were so imbedded in the mess inside, he had to use teeny tiny cm.

incisions in order to save the parathyroids, otherwise, they would have had to

implant them in another place in my body such as my arms. Fortunately,

and to his surprise, my parathyroids had not even been attacked by my

antibodies. It's a very weird disease to have, but it's chronic immune

disease

that does need treatment. Finally, after 25 years, I had developed a 2

inch mass on the right lobe of the gland, and that's when I started having

trouble swallowing. I would literally choke on my food, and then have an acid

reflux type of feeling in the small of my throat right at the base

of the gland. Thus, the end of the cycle for me. Finally, once your

thyroid has put out so much thyroid hormone and the antibodies kill the gland,

you will become hypo, so if you have had severe weight loss in the past

many times over and are now hypo, this would definitely be Hashi's and I would

suggest getting your antibodies checked, as this will be the confirming

factor for you.

Hope this helps. I had a horrible recovery and would not with a TT on

anyone!

________________________________

From: MC28 <cumocumocumo@...>

HYPO Listserve <hypothyroidism >

Sent: Tue, November 24, 2009 9:18:38 AM

Subject: Hashimoto's

Hi everyone,

A couple of years ago I was diagnosed with hypothyroidism. About 8 months

after the diagnosis, my TSH levels were within range and i felt a lot

better. A couple of months later i had another TSH test and my levels were

still within a decent range. Now, fas-tforwarding to about 2 months ago, my

levels have gone out of whack and i have felt like crap of late (sluggish,

irritable). I remember back to an ultrasound of my thyroid that the Dr.

performed and said that there was a little inflamation in the thyroid. For

some reason he didn't think this was a big deal though I had my reservations.

Since my levels are getting worse despite treatment, and since there is

the apparent inflammation, is it possible that I have Hashimoto's? The gal

who takes my blood seems to think it could be a possibility but the fact

that the Dr. has yet to consider it makes me wonder.

If any of you have information on this i would appreciate it.

Thanks!

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tyblossom,

You know I wasn't told if I had either one, I was just told my thyroid was off

and given meds. I was on them for about 2 weeks and I experienced tachycardia

and had to call 911 when my blood pressure went sky high and my heart rate was

114 sitting down. I am not overweight and I workout often. My normal resting

heart rate used to be about 57-60. So at the ER the doc gave me beta blockers

and some Ativan. When I went back to my doc, all he said was he didn't want

to take a risk and I go into stroke or heart attack so we scheduled an ablation

with the radioactive iodine. I went through that on Aug 7. We all waited and

waited, and blood test after blood test and I started feeling really bad and

sluggish and cold about 6 weeks later. I have since been started on

Synthroid. At my last blood test Oct 30, my numbers on TSH had gone down and

now I am starting to feel a little better. I was feeling awful for awhile there.

I am the type that wants

to feel better right away. The endo and my primary just kept telling me to

" hang in there " , that all this takes time. I have never experienced such a

thing in my life. I was screaming at the drop of a hat at my husband, I was

weeping for no reason. Finally I started feeling better this past sunday Nov.

22. I am on 175mcg of Synthroid and am waiting for results of a blood test

taken on the 23rd of Nov which was Monday and today is Wednesday the day before

T-giving, so we shall see where I'm at with that. I was told that in the U.S.

surgery is not done unless absolutely necessary because of where the thyroid

sits which is right on the vocal chords and it's too risky. I guess too many

people are left without a voice or something. That's my experience. I guess I

have to ask if I have Graves or that other because I was never given a label,

just told I had hyperthyroid at the beginning.

 

  

~h

________________________________

From: " tyblossom@... " <tyblossom@...>

hypothyroidism

Sent: Wed, November 25, 2009 9:17:17 AM

Subject: Re: Hashimoto's

 

My daughter has Graves and I have Hashi's. I'm curious why you had surgery

rather than the radioactive stuff to kill your thyroid gland. My daughter

will have to have one or the other in a couple years they said. They said

the radioactive stuff just goes directly to the gland and no side effects. So

that's why I'm curious. A friend of ours had the pill and was really happy

with doing that and now she's hypo. My poor daughter is gaining weight

since being on medication to get the thyroxine out of her body and so

sluggish.

In a message dated 11/24/2009 7:35:02 P.M. Pacific Standard Time,

legalsecretary2007 writes:

Hi there. From recent experience with the total removal of my thyroid

gland because of Hashimoto's I can tell you how it normally works. The

symptoms of Hashi's are these and I can tell you from my own experience.

Over the past 25 years, when I first had chronic thyroiditis (before they

really knew much about Hashi's), I have went at least 8 - 10 times

hyperthyroid. It's not typical to have only hypothyroid with Hashi's as your

antibodies tend to beat up the thyroid each time you go hyper. Each time I went

hyper, I would lose between 60 and 90 pounds, a very drastic weight loss,

no matter what I ate. I would have persistent diarrhea, some times it

would come on while I was driving, it would happen in my car, some times in a

store, I just could never tell. Then, I started having trouble with my

vision. Finally, in 2005, my endo tested my antibodies and normal levels are

0-60, mine were over 20,000. When I went in for my surgery this July, my

surgeon opened up my neck and the gland was completely black, with ink blue

coloring on the interior of the gland. The antibodies had totally destroyed

it - I had no vascularity in the gland, and it was so inflamed that

the normal incision for a total thyroidectomy is normally 2.5 inches, my

gland was so large that it was wrapped around the right side of my windpipe

and so inflamed that my incision was straight across my neck because he

needed a larger opening to get the gland out. In addition, because my

parathyorids were so imbedded in the mess inside, he had to use teeny tiny cm.

incisions in order to save the parathyroids, otherwise, they would have had to

implant them in another place in my body such as my arms. Fortunately,

and to his surprise, my parathyroids had not even been attacked by my

antibodies. It's a very weird disease to have, but it's chronic immune disease

that does need treatment. Finally, after 25 years, I had developed a 2

inch mass on the right lobe of the gland, and that's when I started having

trouble swallowing. I would literally choke on my food, and then have an acid

reflux type of feeling in the small of my throat right at the base

of the gland. Thus, the end of the cycle for me. Finally, once your

thyroid has put out so much thyroid hormone and the antibodies kill the gland,

you will become hypo, so if you have had severe weight loss in the past

many times over and are now hypo, this would definitely be Hashi's and I would

suggest getting your antibodies checked, as this will be the confirming

factor for you.

Hope this helps. I had a horrible recovery and would not with a TT on

anyone!

____________ _________ _________ __

From: MC28 <cumocumocumo>

HYPO Listserve <hypothyroidism>

Sent: Tue, November 24, 2009 9:18:38 AM

Subject: Hashimoto's

Hi everyone,

A couple of years ago I was diagnosed with hypothyroidism. About 8 months

after the diagnosis, my TSH levels were within range and i felt a lot

better. A couple of months later i had another TSH test and my levels were

still within a decent range. Now, fas-tforwarding to about 2 months ago, my

levels have gone out of whack and i have felt like crap of late (sluggish,

irritable). I remember back to an ultrasound of my thyroid that the Dr.

performed and said that there was a little inflamation in the thyroid. For

some reason he didn't think this was a big deal though I had my reservations.

Since my levels are getting worse despite treatment, and since there is

the apparent inflammation, is it possible that I have Hashimoto's? The gal

who takes my blood seems to think it could be a possibility but the fact

that the Dr. has yet to consider it makes me wonder.

If any of you have information on this i would appreciate it.

Thanks!

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Of course it's possible, but you probably won't know until you're

tested. Personally I'd tend to insist upon it.

Luck,

..

..

> Posted by: " MC28 " cumocumocumo@...

> <mailto:cumocumocumo@...?Subject=%20Re%3AHashimoto%27s>

> cumocumocumo <cumocumocumo>

>

>

> Tue Nov 24, 2009 9:21 am (PST)

>

>

>

> Hi everyone,

>

> A couple of years ago I was diagnosed with hypothyroidism. About 8

> months after the diagnosis, my TSH levels were within range and i felt

> a lot better. A couple of months later i had another TSH test and my

> levels were still within a decent range. Now, fas-tforwarding to

> about 2 months ago, my levels have gone out of whack and i have felt

> like crap of late (sluggish, irritable). I remember back to an

> ultrasound of my thyroid that the Dr. performed and said that there

> was a little inflamation in the thyroid. For some reason he didn't

> think this was a big deal though I had my reservations. Since my

> levels are getting worse despite treatment, and since there is the

> apparent inflammation, is it possible that I have Hashimoto's? The

> gal who takes my blood seems to think it could be a possibility but

> the fact that the Dr. has yet to consider it makes me wonder.

>

> If any of you have information on this i would appreciate it.

>

> Thanks!

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I'm sorry you had such a difficult time but glad you seem to finally

have it resolved.

The up and down [roller coaster] effect on your thyroid output is well

known, but I don't think most people suffer with it as much as you did.

Although as I understand it it can still be a royal PITA and make

titration difficult or impossible.

Again from what I understand [and I'm no expert on anything] most

patients don't have the physical changes in the thyroid gland that you

did. What happens is that eventually the thyroid gland basically

withers away to almost nothing. If that's wrong hopefully someone will

advise...

Luck,

..

..

>

> Posted by: " Kitzmiller " legalsecretary2007@...

> <mailto:legalsecretary2007@...?Subject=%20Re%3A%20Hashimoto%27s>

> legalsecretary2007 <legalsecretary2007>

>

>

> Tue Nov 24, 2009 7:34 pm (PST)

>

>

>

> Hi there. From recent experience with the total removal of my thyroid

> gland because of Hashimoto's I can tell you how it normally works. The

> symptoms of Hashi's are these and I can tell you from my own experience.

>

> Over the past 25 years, when I first had chronic thyroiditis (before

> they really knew much about Hashi's), I have went at least 8 - 10

> times hyperthyroid. It's not typical to have only hypothyroid with

> Hashi's as your antibodies tend to beat up the thyroid each time you

> go hyper. Each time I went hyper, I would lose between 60 and 90

> pounds, a very drastic weight loss, no matter what I ate. I would have

> persistent diarrhea, some times it would come on while I was driving,

> it would happen in my car, some times in a store, I just could never

> tell. Then, I started having trouble with my vision. Finally, in 2005,

> my endo tested my antibodies and normal levels are 0-60, mine were

> over 20,000. When I went in for my surgery this July, my surgeon

> opened up my neck and the gland was completely black, with ink blue

> coloring on the interior of the gland. The antibodies had totally

> destroyed it - I had no vascularity in the gland, and it was so

> inflamed that

> the normal incision for a total thyroidectomy is normally 2.5 inches,

> my gland was so large that it was wrapped around the right side of my

> windpipe and so inflamed that my incision was straight across my neck

> because he needed a larger opening to get the gland out. In addition,

> because my parathyorids were so imbedded in the mess inside, he had to

> use teeny tiny cm. incisions in order to save the parathyroids,

> otherwise, they would have had to implant them in another place in my

> body such as my arms. Fortunately, and to his surprise, my

> parathyroids had not even been attacked by my antibodies. It's a very

> weird disease to have, but it's chronic immune disease that does need

> treatment. Finally, after 25 years, I had developed a 2 inch mass on

> the right lobe of the gland, and that's when I started having trouble

> swallowing. I would literally choke on my food, and then have an acid

> reflux type of feeling in the small of my throat right at the base

> of the gland. Thus, the end of the cycle for me. Finally, once your

> thyroid has put out so much thyroid hormone and the antibodies kill

> the gland, you will become hypo, so if you have had severe weight loss

> in the past many times over and are now hypo, this would definitely be

> Hashi's and I would suggest getting your antibodies checked, as this

> will be the confirming factor for you.

>

> Hope this helps. I had a horrible recovery and would not with a TT on

> anyone!

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Thanks to everyone for their responses to my question.  I sometimes feel lost

trying to figure out everything with my condition but certainly appreciate the

support offered by this group.

From: <res075oh@...>

Subject: Re:Hashimoto's

hypothyroidism

Date: Wednesday, November 25, 2009, 11:46 AM

 

Of course it's possible, but you probably won't know until you're

tested. Personally I'd tend to insist upon it.

Luck,

..

..

> Posted by: " MC28 " cumocumocumo

> <mailto:cumocumocumo?Subject=%20Re% 3AHashimoto% 27s>

> cumocumocumo <http://profiles. / cumocumocumo>

>

>

> Tue Nov 24, 2009 9:21 am (PST)

>

>

>

> Hi everyone,

>

> A couple of years ago I was diagnosed with hypothyroidism. About 8

> months after the diagnosis, my TSH levels were within range and i felt

> a lot better. A couple of months later i had another TSH test and my

> levels were still within a decent range. Now, fas-tforwarding to

> about 2 months ago, my levels have gone out of whack and i have felt

> like crap of late (sluggish, irritable). I remember back to an

> ultrasound of my thyroid that the Dr. performed and said that there

> was a little inflamation in the thyroid. For some reason he didn't

> think this was a big deal though I had my reservations. Since my

> levels are getting worse despite treatment, and since there is the

> apparent inflammation, is it possible that I have Hashimoto's? The

> gal who takes my blood seems to think it could be a possibility but

> the fact that the Dr. has yet to consider it makes me wonder.

>

> If any of you have information on this i would appreciate it.

>

> Thanks!

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Thanks for your story. I think you probably had graves and now are

hypothyroid. It was very interesting. I hope you continue to improve!

In a message dated 11/25/2009 7:58:15 A.M. Pacific Standard Time,

daisyblu@... writes:

tyblossom,

You know I wasn't told if I had either one, I was just told my thyroid was

off and given meds. I was on them for about 2 weeks and I experienced

tachycardia and had to call 911 when my blood pressure went sky high and my

heart rate was 114 sitting down. I am not overweight and I workout often. My

normal resting heart rate used to be about 57-60. So at the ER the doc gave

me beta blockers and some Ativan. When I went back to my doc, all he said

was he didn't want to take a risk and I go into stroke or heart attack so we

scheduled an ablation with the radioactive iodine. I went through that on

Aug 7. We all waited and waited, and blood test after blood test and I

started feeling really bad and sluggish and cold about 6 weeks later. I have

since been started on Synthroid. At my last blood test Oct 30, my numbers on

TSH had gone down and now I am starting to feel a little better. I was

feeling awful for awhile there. I am the type that wants

to feel better right away. The endo and my primary just kept telling me to

" hang in there " , that all this takes time. I have never experienced such a

thing in my life. I was screaming at the drop of a hat at my husband, I

was weeping for no reason. Finally I started feeling better this past sunday

Nov. 22. I am on 175mcg of Synthroid and am waiting for results of a blood

test taken on the 23rd of Nov which was Monday and today is Wednesday the

day before T-giving, so we shall see where I'm at with that. I was told that

in the U.S. surgery is not done unless absolutely necessary because of

where the thyroid sits which is right on the vocal chords and it's too risky.

I guess too many people are left without a voice or something. That's my

experience. I guess I have to ask if I have Graves or that other because I

was never given a label, just told I had hyperthyroid at the beginning.

~h

________________________________

From: " tyblossom@... " <tyblossom@...>

hypothyroidism

Sent: Wed, November 25, 2009 9:17:17 AM

Subject: Re: Hashimoto's

My daughter has Graves and I have Hashi's. I'm curious why you had surgery

rather than the radioactive stuff to kill your thyroid gland. My daughter

will have to have one or the other in a couple years they said. They said

the radioactive stuff just goes directly to the gland and no side effects.

So

that's why I'm curious. A friend of ours had the pill and was really happy

with doing that and now she's hypo. My poor daughter is gaining weight

since being on medication to get the thyroxine out of her body and so

sluggish.

In a message dated 11/24/2009 7:35:02 P.M. Pacific Standard Time,

legalsecretary2007 writes:

Hi there. From recent experience with the total removal of my thyroid

gland because of Hashimoto's I can tell you how it normally works. The

symptoms of Hashi's are these and I can tell you from my own experience.

Over the past 25 years, when I first had chronic thyroiditis (before they

really knew much about Hashi's), I have went at least 8 - 10 times

hyperthyroid. It's not typical to have only hypothyroid with Hashi's as

your

antibodies tend to beat up the thyroid each time you go hyper. Each time I

went

hyper, I would lose between 60 and 90 pounds, a very drastic weight loss,

no matter what I ate. I would have persistent diarrhea, some times it

would come on while I was driving, it would happen in my car, some times

in a

store, I just could never tell. Then, I started having trouble with my

vision. Finally, in 2005, my endo tested my antibodies and normal levels

are

0-60, mine were over 20,000. When I went in for my surgery this July, my

surgeon opened up my neck and the gland was completely black, with ink

blue

coloring on the interior of the gland. The antibodies had totally

destroyed

it - I had no vascularity in the gland, and it was so inflamed that

the normal incision for a total thyroidectomy is normally 2.5 inches, my

gland was so large that it was wrapped around the right side of my

windpipe

and so inflamed that my incision was straight across my neck because he

needed a larger opening to get the gland out. In addition, because my

parathyorids were so imbedded in the mess inside, he had to use teeny tiny

cm.

incisions in order to save the parathyroids, otherwise, they would have

had to

implant them in another place in my body such as my arms. Fortunately,

and to his surprise, my parathyroids had not even been attacked by my

antibodies. It's a very weird disease to have, but it's chronic immune

disease

that does need treatment. Finally, after 25 years, I had developed a 2

inch mass on the right lobe of the gland, and that's when I started having

trouble swallowing. I would literally choke on my food, and then have an

acid

reflux type of feeling in the small of my throat right at the base

of the gland. Thus, the end of the cycle for me. Finally, once your

thyroid has put out so much thyroid hormone and the antibodies kill the

gland,

you will become hypo, so if you have had severe weight loss in the past

many times over and are now hypo, this would definitely be Hashi's and I

would

suggest getting your antibodies checked, as this will be the confirming

factor for you.

Hope this helps. I had a horrible recovery and would not with a TT on

anyone!

____________ _________ _________ __

From: MC28 <cumocumocumo>

HYPO Listserve <hypothyroidism>

Sent: Tue, November 24, 2009 9:18:38 AM

Subject: Hashimoto's

Hi everyone,

A couple of years ago I was diagnosed with hypothyroidism. About 8 months

after the diagnosis, my TSH levels were within range and i felt a lot

better. A couple of months later i had another TSH test and my levels were

still within a decent range. Now, fas-tforwarding to about 2 months ago,

my

levels have gone out of whack and i have felt like crap of late (sluggish,

irritable). I remember back to an ultrasound of my thyroid that the Dr.

performed and said that there was a little inflamation in the thyroid. For

some reason he didn't think this was a big deal though I had my

reservations.

Since my levels are getting worse despite treatment, and since there is

the apparent inflammation, is it possible that I have Hashimoto's? The gal

who takes my blood seems to think it could be a possibility but the fact

that the Dr. has yet to consider it makes me wonder.

If any of you have information on this i would appreciate it.

Thanks!

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Hi Sharon - if your antibody blood results showed a number of

'1' - then you do NOT have Hashimoto's disease. Whoever told you that you have

Hashimoto's is wrong.

Luv - Sheila

Hi all,

I'm really

confused,as people say that you have Hashi's when you have high antibodies.I

was told I have Hashi's and when diagnosed,my Anti TPO Antibodies was 1 in a

ref range of 0-150 U/ml and Anti Thyroglobin Antibodies was 1 in a ref range

of 0-150 U/ml.If Hashi's is the opposite then why would I be told I've got it

with virtually no antibodies!?

Best wishes Sharon

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.79/2522 - Release Date: 11/25/09

19:43:00

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  • 8 months later...
Guest guest

2 weeks is often suggested. --

At 12:00 AM 8/9/2010, you wrote:

>Hi all,

>

>How long should you stay on 1.5 mg if you have Hashimotos before you try

>to increase the dose?

>

>Thank you,

>June

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste

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Guest guest

Hi June-

I stayed on my starting dose of 1.5 for 1 month, as suggested by my pharmacist. I had to lower my thyroid meds on the second day of starting LDN (went hyper) and with each increase as well. Good Luck!

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Guest guest

I also have hashimoto's and was nervous as my doc couldn't tell when would be a good time to increase. So, I waited 3 weeks before I increased by .5 mg, then waited a week, increased .5 mg until I moved up to 3 mg total. As instructed by my doc I looked for tell tell signs that my thyroid levels were changing. Look for night sweats, racing heart, nervousness, racing thoughts, pretty much anything that would be extreme. I didn't have these changes, but then I had to have my thyroid surgically removed before I had started LDN. As instructed, I went in for more blood tests for thyroid levels before I went any further with my dosage. The good news is the LDN did help reduce the hashimotos, though I still test poss, and my body is absorbing the thyroid hormones better, though not completely.Good luck, pay very close attention

to what your body is doing. Don't second guess that weird feeling or sharp whatever. Don't stop your LDN, just go in for more tests on your thyroid levels. Any meds you take for thyroid will have to be adjusted, which is a good thing. Best of luck.....MariFrom: June <junevarn@...>Subject: [low dose naltrexone] Hashimoto'slow dose naltrexone Date: Monday, August 9, 2010, 5:00 AMHi all,How long should you stay on 1.5 mg if you have Hashimotos before you try to increase the dose?Thank you,June------------------------------------

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Hi , Once taking thyroid medication ,especially T3 (cytomel) the TSH is really a lousy test- it will always read . NOTE you should not take thyroid meds on the day of a blood test until after blood has been drawn- otherwise your results especially FT3 will look better than they really are. You are not taking a very large dose at all so you you are probably undermedicated- it would be more useful to see FT4 and FT3 which will monitor you better then TSH. 5mcg Cytomel is probably not enough for you to even tell the difference! Armour natural dessicated thyroid has been reformulated- to add more cellulose to the fillers, but this does not affect everybody- there is thought that it affects most those who have low stomach acid. Me- I can't tell the difference between old and new. Time to change your endo I think! Shomon has a list of 'good' thyroid docs on her thyroid.about.com site for the US, but it may not be up to date. > thyroid treatment > From: jojocantsleep@...> Date: Mon, 16 Aug 2010 18:59:52 +0000> Subject: Hashimoto's> > Hello, Let me start off by saying thank you for letting me join your group. I was newly diagnosed with Hashimoto's/hypertyroidism Dece,ber 2009. I am currently taking Synthroid 88mcg m-sat, 44mcg Sun and Cytomel 5mcg. My current tsh is 1.17 compared to 32 when first diagnosed. My question is even though I'm in the range, why do I feel so terrible with: headaches, weight gain, sluggish etc. I am wondering if I am experiencing side effects from the synthetic medicine or being mismanaged. I also would like to know if their are any recommendations on natural thyroid that anyone could reccomend. I am from the US, and recently they reformulated the natural thyroid and I heard that it is not working. I might add that everytime I call or make an appointment with my endo he pretty much POO POO's me. Thanks for your time...> > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

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  • 2 months later...

Sandy,

The only controversy about iodine for Hashi's is the lies that are told to

keep people from enjoying good health. Hashi's is caused by lack of

iodine. There is no controversy if one knows the facts. Steph posted the

facts.

I have Hashi's and fibromyalgia and I have so much more energy with iodine

in my life.

I also don't now what form of thyroid replacement you're taking but I never

felt very good until I switched to whole thyroid, like NatureThroid or Armour.

--

>I am hoping to get a little advice. I was diagnosed with hashimoto's 12

>years ago just after the birth of my first child. I have tried many

>different treatment's and I know there is some controversy on whether or

>not it is safe for hashimoto's patients to take Iodine? I am wondering if

>any of you have any experience with this? If so what dose did you start

>with? Any information you could provide would be greatly appreciated.

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste

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