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Hi! I am pregnant and cannot have steriod creams right now. My P is

not bad, just a couple of patches, but it's trying to flare with the

really cold winter we're having here. Here is what I'm doing to keep

it at bay. I got some Aveeno collidial (sp?) oatmeal lotion, as soon

as I get out of the shower I dry off and put a ton of this on where

new patches are trying to form. This has kept it at bay, and has

given some improvement in the already existing patches. I would

definitely try the oatmeal bath that some body recommended. My

daughter had chicken pox and this cleared them up and stopped the

itching in one bath!!! It may not totally clear it but might give

some releif! Hope this helps!

--Merribeth

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  • 2 weeks later...

Hi Merribeth,

I know this is a really slow response, but why is it that you can't use

steroid creams? I had four babies and used steroid creams while I was

pregnant with all of them. Of course, two of them have eczema now, but the

other two have no problems at all. I was worried about using the creams but

my dermie and o.b. told me that it would be fine. Who can ya' believe? I'm

with you on the frustration part!

Cheryl

[ ] Re: I am so frustrated

> Hi! I am pregnant and cannot have steriod creams right now. My P is

> not bad, just a couple of patches, but it's trying to flare with the

> really cold winter we're having here. Here is what I'm doing to keep

> it at bay. I got some Aveeno collidial (sp?) oatmeal lotion, as soon

> as I get out of the shower I dry off and put a ton of this on where

> new patches are trying to form. This has kept it at bay, and has

> given some improvement in the already existing patches. I would

> definitely try the oatmeal bath that some body recommended. My

> daughter had chicken pox and this cleared them up and stopped the

> itching in one bath!!! It may not totally clear it but might give

> some releif! Hope this helps!

> --Merribeth

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

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Guest guest

Hi Dawn

You must be so very frustrated. Have you had thyroid disease diagnosed before?

The way you're bouncing back and forth makes me think of Hashi's. But I don't

know much about it. I do understand rapid weight gain from thyroid problems,

having gained 40 pounds in the first six months of this disease (previous normal

for me was 100 lbs). I now am balanced five years later and am still

overweight. It seems that no matter how hard I try, I continue to gain weight,

slowly. I had elevated alk phos while I was hyper but have not had it since.

This is a slow to treat kind of disease and you're lucky to be seen every three

weeks, believe it or not. While you're bouncing around, it might be an idea to

get a bone density scan done. Hyperthyroidism can drain your calcium. Take the

time to become well informed about your disease. There are blood tests that I

believe can identify your particular antibodies. Ask any questions you think

of.

Kate

I am so frustrated

Last December, my doc did some lab work and called me to tell me that

I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He sent me to an

endocrinologist, who did more lab work along with RAIU test. Follow

up with him - he said " hmmm, well everything looks normal. Tell you

what - let's check it again in 3 weeks. " So we check again in 3

weeks, and he says " hmmm, you are hyPOthyroid. TSH is now 8.25 and

T4 is low. Let's check it again in 3 weeks. " So we check again in 3

weeks, and he says " hmmm... well, TSH is coming back into the normal

range 4.25. " (I think that's 'old' normal range isn't it??). He

says (you'll never guess) " hmmm... let's check again in 3 weeks " .

I'm sick of this guy. He's the ONLY endocrinologist in my county,

which doesn't give me a lot of choice. In the meantime, it's been

months and months. I now have elevated liver enzymes from rapid

weight gain, I'm gaining weight on a diet of lettuce and water,

working out like a madwoman. The hepatologist says the liver problem

is from the rapid weight gain, which is from the thyroid and when

that's fixed, I will lose weight and the liver enzymes will go down.

At the same time, going through menopause and the hotflashes are the

absolute worst - but - my regular doctor doesn't want to deal with my

hormones until my thyroid is straightened out.

SO - I'm a mess and nobody will touch me until the endocrinologist

straightens out my thyroid - and the only thing he does is look at my

labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did I mention

I'm getting cranky??

------------------------------------------------------------------------------

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Kate,

Thank you so much for responding. You are not going to believe the

coincidence that just happened. To make a long story short - I went

back to my regular doc a couple weeks ago because I was so unhappy

with the endocrinologist. He didn't seem to want to step into the

middle of that and I could sense him avoiding the issue and urging me

to be patient, BUT in the process of our conversation, we began

talking about hot flashes and menopause and he said I needed to have

a bone density scan. He said that (because of menopause) I would

lose more bone mass in the next 5 years than at any other time of my

life, so he wanted a 'baseline' scan done. I had that done

yesterday. He called me today - and told me that I HAVE osteoporosis

in my lower back. Now I'm wondering if it's related to the thyroid

problem. I am so confused. I thought osteoporosis was for little

old ladies. I'm 51.

I know I need to become more educated about this disease because I

get " pieces " of information and I don't know enough about it to make

any sense of it. I know my TSH and T4 are bouncing between hyPER and

hyPO and last time he said that I have some kind of antibodies that

should be below 200 and my level was over 300. Again, I don't know

what that means, although he mentioned Hasimoto's (and then he

said " let's check it again in 3 weeks " ).

Anyway, a big part of my frustration is simply that I know this is

not normal for me, and I feel like no one hears me. So just the fact

that you responded makes me feel better already.

Thank you.

Dawn

> Hi Dawn

> You must be so very frustrated. Have you had thyroid disease

diagnosed before? The way you're bouncing back and forth makes me

think of Hashi's. But I don't know much about it. I do understand

rapid weight gain from thyroid problems, having gained 40 pounds in

the first six months of this disease (previous normal for me was 100

lbs). I now am balanced five years later and am still overweight.

It seems that no matter how hard I try, I continue to gain weight,

slowly. I had elevated alk phos while I was hyper but have not had

it since. This is a slow to treat kind of disease and you're lucky

to be seen every three weeks, believe it or not. While you're

bouncing around, it might be an idea to get a bone density scan

done. Hyperthyroidism can drain your calcium. Take the time to

become well informed about your disease. There are blood tests that

I believe can identify your particular antibodies. Ask any questions

you think of.

> Kate

> I am so frustrated

>

>

>

> Last December, my doc did some lab work and called me to tell me

that

> I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He sent me to

an

> endocrinologist, who did more lab work along with RAIU test.

Follow

> up with him - he said " hmmm, well everything looks normal. Tell

you

> what - let's check it again in 3 weeks. " So we check again in 3

> weeks, and he says " hmmm, you are hyPOthyroid. TSH is now 8.25

and

> T4 is low. Let's check it again in 3 weeks. " So we check again

in 3

> weeks, and he says " hmmm... well, TSH is coming back into the

normal

> range 4.25. " (I think that's 'old' normal range isn't it??). He

> says (you'll never guess) " hmmm... let's check again in 3 weeks " .

>

> I'm sick of this guy. He's the ONLY endocrinologist in my

county,

> which doesn't give me a lot of choice. In the meantime, it's

been

> months and months. I now have elevated liver enzymes from rapid

> weight gain, I'm gaining weight on a diet of lettuce and water,

> working out like a madwoman. The hepatologist says the liver

problem

> is from the rapid weight gain, which is from the thyroid and when

> that's fixed, I will lose weight and the liver enzymes will go

down.

> At the same time, going through menopause and the hotflashes are

the

> absolute worst - but - my regular doctor doesn't want to deal

with my

> hormones until my thyroid is straightened out.

>

> SO - I'm a mess and nobody will touch me until the

endocrinologist

> straightens out my thyroid - and the only thing he does is look

at my

> labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did I

mention

> I'm getting cranky??

>

>

>

>

>

> --------------------------------------------------------------------

----------

>

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Guest guest

I too was diagnosed with osteoporosis at age 51. It is stunning. I had been a

smoker (quit). That was one risk factor. I had had hyperactive thyroid -

another risk factor for osteoporosis. At first I was put on Didrocal. But the

improvement was marginal. Then I was put on hormone replacement therapy (I

wasn't very happy about that) and proceeded to take two 600mg calcium pills with

vitamin D3, and I have improved tremendously. My spine is now normal. My hip

still has osteoporosis but is improving. You need to treat this disease

aggressively at our age. You can reverse it, or at least improve it

considerably. I have had several major falls, and have thought I would break a

bone but this was not the case. So do take care of yourself....

Hang in there, it's a long slow recovery with thyroid disease. You have a

'life altering' disease. You will be fine but you will need to learn new ways

in order to live well.

I too have problems with being not heard. It's not that I say nothing, it's

just that I don't jump up and down. But with persistance you will be heard and

your life will improve.

Kate

I am so frustrated

>

>

>

> Last December, my doc did some lab work and called me to tell me

that

> I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He sent me to

an

> endocrinologist, who did more lab work along with RAIU test.

Follow

> up with him - he said " hmmm, well everything looks normal. Tell

you

> what - let's check it again in 3 weeks. " So we check again in 3

> weeks, and he says " hmmm, you are hyPOthyroid. TSH is now 8.25

and

> T4 is low. Let's check it again in 3 weeks. " So we check again

in 3

> weeks, and he says " hmmm... well, TSH is coming back into the

normal

> range 4.25. " (I think that's 'old' normal range isn't it??). He

> says (you'll never guess) " hmmm... let's check again in 3 weeks " .

>

> I'm sick of this guy. He's the ONLY endocrinologist in my

county,

> which doesn't give me a lot of choice. In the meantime, it's

been

> months and months. I now have elevated liver enzymes from rapid

> weight gain, I'm gaining weight on a diet of lettuce and water,

> working out like a madwoman. The hepatologist says the liver

problem

> is from the rapid weight gain, which is from the thyroid and when

> that's fixed, I will lose weight and the liver enzymes will go

down.

> At the same time, going through menopause and the hotflashes are

the

> absolute worst - but - my regular doctor doesn't want to deal

with my

> hormones until my thyroid is straightened out.

>

> SO - I'm a mess and nobody will touch me until the

endocrinologist

> straightens out my thyroid - and the only thing he does is look

at my

> labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did I

mention

> I'm getting cranky??

>

>

>

>

>

> --------------------------------------------------------------------

----------

>

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Guest guest

I was also a smoker (quit) and I'm sure that contributed to the

osteoporosis. Sounds like we have a lot in common. My doc said I

should get Caltrate with Vit. D and take 1500 mg a day. He also

called in a prescrip. for hmmm.... fosomax? phosomax? or something

like that. I haven't picked it up yet. It's a " once a week "

medication, so we'll see how it goes.

I go see the endocrinologist on Monday. If he says " hmmm, let's see

what it looks like in 3 weeks " , I'm gonna lose it. I'll let you know

what happens.

> > Hi Dawn

> > You must be so very frustrated. Have you had thyroid disease

> diagnosed before? The way you're bouncing back and forth makes

me

> think of Hashi's. But I don't know much about it. I do

understand

> rapid weight gain from thyroid problems, having gained 40 pounds

in

> the first six months of this disease (previous normal for me was

100

> lbs). I now am balanced five years later and am still

overweight.

> It seems that no matter how hard I try, I continue to gain

weight,

> slowly. I had elevated alk phos while I was hyper but have not

had

> it since. This is a slow to treat kind of disease and you're

lucky

> to be seen every three weeks, believe it or not. While you're

> bouncing around, it might be an idea to get a bone density scan

> done. Hyperthyroidism can drain your calcium. Take the time to

> become well informed about your disease. There are blood tests

that

> I believe can identify your particular antibodies. Ask any

questions

> you think of.

> > Kate

> > I am so frustrated

> >

> >

> >

> > Last December, my doc did some lab work and called me to tell

me

> that

> > I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He sent

me to

> an

> > endocrinologist, who did more lab work along with RAIU test.

> Follow

> > up with him - he said " hmmm, well everything looks normal.

Tell

> you

> > what - let's check it again in 3 weeks. " So we check again

in 3

> > weeks, and he says " hmmm, you are hyPOthyroid. TSH is now

8.25

> and

> > T4 is low. Let's check it again in 3 weeks. " So we check

again

> in 3

> > weeks, and he says " hmmm... well, TSH is coming back into the

> normal

> > range 4.25. " (I think that's 'old' normal range isn't

it??). He

> > says (you'll never guess) " hmmm... let's check again in 3

weeks " .

> >

> > I'm sick of this guy. He's the ONLY endocrinologist in my

> county,

> > which doesn't give me a lot of choice. In the meantime, it's

> been

> > months and months. I now have elevated liver enzymes from

rapid

> > weight gain, I'm gaining weight on a diet of lettuce and

water,

> > working out like a madwoman. The hepatologist says the liver

> problem

> > is from the rapid weight gain, which is from the thyroid and

when

> > that's fixed, I will lose weight and the liver enzymes will

go

> down.

> > At the same time, going through menopause and the hotflashes

are

> the

> > absolute worst - but - my regular doctor doesn't want to deal

> with my

> > hormones until my thyroid is straightened out.

> >

> > SO - I'm a mess and nobody will touch me until the

> endocrinologist

> > straightens out my thyroid - and the only thing he does is

look

> at my

> > labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did I

> mention

> > I'm getting cranky??

> >

> >

> >

> >

> >

> > ----------------------------------------------------------------

----

> ----------

> >

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Guest guest

Why don't you read up about Hashimoto's so that you are ready with a bunch of

questions for your endo. Also ask to read the report about your osteoporosis.

It wasn't until I read the recommendations from the lab that I was placed on HRT

(the lab's recommendation). And I didn't improve until then. I find it handy

to take a list of questions/issues with me on these appointments and my husband

sometimes goes with me and that usually keeps the doctor in line. No BS....

Also they don't like to keep husband's (busy men, all) waiting.

My mom's neighbour took Fossamax with great success. When you take your calcium

you need to space it out during the day and don't take it within four hours of

taking synthroid (if you're taking it). It interfere's with your body's uptake

of your synthroid. And if you take vitamins with iron, you should not take them

within four hours of taking the Caltrate because the iron binds with the calcium

and you lose.

Just some tidbits all readily available on the web. By the way, it seems to me

that I read somewhere that just plain calcium and vitamin D is more effective

than Caltrate. But I could be wrong...

Kate

I am so frustrated

> >

> >

> >

> > Last December, my doc did some lab work and called me to tell

me

> that

> > I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He sent

me to

> an

> > endocrinologist, who did more lab work along with RAIU test.

> Follow

> > up with him - he said " hmmm, well everything looks normal.

Tell

> you

> > what - let's check it again in 3 weeks. " So we check again

in 3

> > weeks, and he says " hmmm, you are hyPOthyroid. TSH is now

8.25

> and

> > T4 is low. Let's check it again in 3 weeks. " So we check

again

> in 3

> > weeks, and he says " hmmm... well, TSH is coming back into the

> normal

> > range 4.25. " (I think that's 'old' normal range isn't

it??). He

> > says (you'll never guess) " hmmm... let's check again in 3

weeks " .

> >

> > I'm sick of this guy. He's the ONLY endocrinologist in my

> county,

> > which doesn't give me a lot of choice. In the meantime, it's

> been

> > months and months. I now have elevated liver enzymes from

rapid

> > weight gain, I'm gaining weight on a diet of lettuce and

water,

> > working out like a madwoman. The hepatologist says the liver

> problem

> > is from the rapid weight gain, which is from the thyroid and

when

> > that's fixed, I will lose weight and the liver enzymes will

go

> down.

> > At the same time, going through menopause and the hotflashes

are

> the

> > absolute worst - but - my regular doctor doesn't want to deal

> with my

> > hormones until my thyroid is straightened out.

> >

> > SO - I'm a mess and nobody will touch me until the

> endocrinologist

> > straightens out my thyroid - and the only thing he does is

look

> at my

> > labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did I

> mention

> > I'm getting cranky??

> >

> >

> >

> >

> >

> > ----------------------------------------------------------------

----

> ----------

> >

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Guest guest

Ok, here's the scoop. I had a visit with my endo today to go over

the last round of lab tests. TSH is 4.90, FT4 was in the normal

range (bordered on low), but FT3 was double the normal level.

Again - inconsistant test results. The only thing that has been

consistant is the antibodies (TPO) level is hovering around the 300

mark and should be less than 2. He says that indicates Hashimoto's,

but he's baffled as to why my lab tests (TSH, FT3 & FT4) are all over

the map.

He talked about 3 options:

1. Surgery (not if I can help it)

2. A short course of prednisone (I'm not crazy bout that idea either)

3. A low dose of synthroid and test levels again in 2 weeks.

I'm still thinking about it. I might go with option 3, but I'm

thinking it's time for a second opinion. I'm not comfortable when a

doctor says " hmmm, this is a puzzle... " , ya know? What do you think?

BTW, I've gained 25 lbs in 5 months - even when my lab tests said I

was hyperthyroid.

> > > Hi Dawn

> > > You must be so very frustrated. Have you had thyroid

disease

> > diagnosed before? The way you're bouncing back and forth

makes

> me

> > think of Hashi's. But I don't know much about it. I do

> understand

> > rapid weight gain from thyroid problems, having gained 40

pounds

> in

> > the first six months of this disease (previous normal for me

was

> 100

> > lbs). I now am balanced five years later and am still

> overweight.

> > It seems that no matter how hard I try, I continue to gain

> weight,

> > slowly. I had elevated alk phos while I was hyper but have

not

> had

> > it since. This is a slow to treat kind of disease and you're

> lucky

> > to be seen every three weeks, believe it or not. While

you're

> > bouncing around, it might be an idea to get a bone density

scan

> > done. Hyperthyroidism can drain your calcium. Take the time

to

> > become well informed about your disease. There are blood

tests

> that

> > I believe can identify your particular antibodies. Ask any

> questions

> > you think of.

> > > Kate

> > > I am so frustrated

> > >

> > >

> > >

> > > Last December, my doc did some lab work and called me to

tell

> me

> > that

> > > I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He

sent

> me to

> > an

> > > endocrinologist, who did more lab work along with RAIU

test.

> > Follow

> > > up with him - he said " hmmm, well everything looks

normal.

> Tell

> > you

> > > what - let's check it again in 3 weeks. " So we check

again

> in 3

> > > weeks, and he says " hmmm, you are hyPOthyroid. TSH is

now

> 8.25

> > and

> > > T4 is low. Let's check it again in 3 weeks. " So we

check

> again

> > in 3

> > > weeks, and he says " hmmm... well, TSH is coming back into

the

> > normal

> > > range 4.25. " (I think that's 'old' normal range isn't

> it??). He

> > > says (you'll never guess) " hmmm... let's check again in 3

> weeks " .

> > >

> > > I'm sick of this guy. He's the ONLY endocrinologist in

my

> > county,

> > > which doesn't give me a lot of choice. In the meantime,

it's

> > been

> > > months and months. I now have elevated liver enzymes

from

> rapid

> > > weight gain, I'm gaining weight on a diet of lettuce and

> water,

> > > working out like a madwoman. The hepatologist says the

liver

> > problem

> > > is from the rapid weight gain, which is from the thyroid

and

> when

> > > that's fixed, I will lose weight and the liver enzymes

will

> go

> > down.

> > > At the same time, going through menopause and the

hotflashes

> are

> > the

> > > absolute worst - but - my regular doctor doesn't want to

deal

> > with my

> > > hormones until my thyroid is straightened out.

> > >

> > > SO - I'm a mess and nobody will touch me until the

> > endocrinologist

> > > straightens out my thyroid - and the only thing he does

is

> look

> > at my

> > > labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did

I

> > mention

> > > I'm getting cranky??

> > >

> > >

> > >

> > >

> > >

> > > ------------------------------------------------------------

----

> ----

> > ----------

> > >

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Guest guest

Sounds confusing. If your TSH and FT4 are in normal range, and your FT3 is

high, why would your doctor want you to take more thyroid hormone? With your

antibodies being high, obviously something is going on. I've never read about

anyone being on prednisone for thyroid - only for thyroid eye disease...

But my take on Hashi's is that you fluctuate between hypo and hyper. I'm not

really very sure about that. If it were me, I'd hate that up and down thing. I

don't know if I could live with it. There is a 'block and replace' theory you

might want to investigate. Don't be rushed into doing anything you may regret

in the future.

I gained 40 pounds in 6 months after being diagnosed as hyper before being

treated. I've never lost it. The only time I lose weight at all is when I'm so

hypo I can't be bothered to eat :-) Weight does seem to be a plague for some of

us. I think if someone had told me to change my eating habits and been specific

with what and why before I'd gained all the weight it might have helped.

Nowadays, for instance, I eat no sauces, including salad dressings, butter,

etc., and drink only water. Sounds like very little but there are a lot of

calories to save doing just that. I had to quit caffeine anyway so wasn't so

hard after that. I have finally, this past year, been able to hold my weight at

the same level for a whole year without being absolutely miserable. I have also

started taking a multiple vitamin supplement more consistantly, so that I know

I'm not missing anything. I take one with iron so that I am finally also not

anemic! These are just some thoughts for you if you are concerned about weight

gain.

Keep reading...

Kate

I am so frustrated

> > >

> > >

> > >

> > > Last December, my doc did some lab work and called me to

tell

> me

> > that

> > > I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He

sent

> me to

> > an

> > > endocrinologist, who did more lab work along with RAIU

test.

> > Follow

> > > up with him - he said " hmmm, well everything looks

normal.

> Tell

> > you

> > > what - let's check it again in 3 weeks. " So we check

again

> in 3

> > > weeks, and he says " hmmm, you are hyPOthyroid. TSH is

now

> 8.25

> > and

> > > T4 is low. Let's check it again in 3 weeks. " So we

check

> again

> > in 3

> > > weeks, and he says " hmmm... well, TSH is coming back into

the

> > normal

> > > range 4.25. " (I think that's 'old' normal range isn't

> it??). He

> > > says (you'll never guess) " hmmm... let's check again in 3

> weeks " .

> > >

> > > I'm sick of this guy. He's the ONLY endocrinologist in

my

> > county,

> > > which doesn't give me a lot of choice. In the meantime,

it's

> > been

> > > months and months. I now have elevated liver enzymes

from

> rapid

> > > weight gain, I'm gaining weight on a diet of lettuce and

> water,

> > > working out like a madwoman. The hepatologist says the

liver

> > problem

> > > is from the rapid weight gain, which is from the thyroid

and

> when

> > > that's fixed, I will lose weight and the liver enzymes

will

> go

> > down.

> > > At the same time, going through menopause and the

hotflashes

> are

> > the

> > > absolute worst - but - my regular doctor doesn't want to

deal

> > with my

> > > hormones until my thyroid is straightened out.

> > >

> > > SO - I'm a mess and nobody will touch me until the

> > endocrinologist

> > > straightens out my thyroid - and the only thing he does

is

> look

> > at my

> > > labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did

I

> > mention

> > > I'm getting cranky??

> > >

> > >

> > >

> > >

> > >

> > > ------------------------------------------------------------

----

> ----

> > ----------

> > >

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Share on other sites

Guest guest

It IS confusing and every single test is different. My Endo says I'm

his " patient of the year " because my tests don't make any sense. It

doesn't give me a warm, fuzzy, secure feeling to know that he doesn't

really know what the problem is or how to treat it. He did explain

that Hashi's does literally make you have symptoms of both hyper and

hypo as you swing between the two. But he said that after being

attacked by antibodies for so long, usually the thyroid gland gives

in and you become hypo. For some reason, my thyroid continues to try

to fight back, so I am still swinging between hypo and hyper. He

mentioned the prednisone because steroids are often used to " settle

down " an autoimmune problem and he thought it might give my thyroid a

rest. I'm not wild about taking steroids, even short term. I know

there are lots of side effects (including more bone loss). He gave

me the prescription for a low dose of synthroid thinking it might

help jump start my metabolism. (I've gained 25 lbs in 5 months. If

I keep going at this rate, I'm in big trouble.) I haven't started

taking it yet and havent' decided if I'm going to. I'm already on

Atenolol for a racing heart... **Sigh** I hate this. I don't know

what to do. I don't know if this doctor has any idea what to do and

I don't like being his little experiment. I'm thinking it's time for

a second opinion.

> > > > Hi Dawn

> > > > You must be so very frustrated. Have you had thyroid

> disease

> > > diagnosed before? The way you're bouncing back and forth

> makes

> > me

> > > think of Hashi's. But I don't know much about it. I do

> > understand

> > > rapid weight gain from thyroid problems, having gained 40

> pounds

> > in

> > > the first six months of this disease (previous normal for

me

> was

> > 100

> > > lbs). I now am balanced five years later and am still

> > overweight.

> > > It seems that no matter how hard I try, I continue to

gain

> > weight,

> > > slowly. I had elevated alk phos while I was hyper but

have

> not

> > had

> > > it since. This is a slow to treat kind of disease and

you're

> > lucky

> > > to be seen every three weeks, believe it or not. While

> you're

> > > bouncing around, it might be an idea to get a bone

density

> scan

> > > done. Hyperthyroidism can drain your calcium. Take the

time

> to

> > > become well informed about your disease. There are blood

> tests

> > that

> > > I believe can identify your particular antibodies. Ask

any

> > questions

> > > you think of.

> > > > Kate

> > > > I am so frustrated

> > > >

> > > >

> > > >

> > > > Last December, my doc did some lab work and called me

to

> tell

> > me

> > > that

> > > > I was hyperthyroid. TSH was 0.09 and T4 was 1.95.

He

> sent

> > me to

> > > an

> > > > endocrinologist, who did more lab work along with

RAIU

> test.

> > > Follow

> > > > up with him - he said " hmmm, well everything looks

> normal.

> > Tell

> > > you

> > > > what - let's check it again in 3 weeks. " So we check

> again

> > in 3

> > > > weeks, and he says " hmmm, you are hyPOthyroid. TSH

is

> now

> > 8.25

> > > and

> > > > T4 is low. Let's check it again in 3 weeks. " So we

> check

> > again

> > > in 3

> > > > weeks, and he says " hmmm... well, TSH is coming back

into

> the

> > > normal

> > > > range 4.25. " (I think that's 'old' normal range

isn't

> > it??). He

> > > > says (you'll never guess) " hmmm... let's check again

in 3

> > weeks " .

> > > >

> > > > I'm sick of this guy. He's the ONLY endocrinologist

in

> my

> > > county,

> > > > which doesn't give me a lot of choice. In the

meantime,

> it's

> > > been

> > > > months and months. I now have elevated liver enzymes

> from

> > rapid

> > > > weight gain, I'm gaining weight on a diet of lettuce

and

> > water,

> > > > working out like a madwoman. The hepatologist says

the

> liver

> > > problem

> > > > is from the rapid weight gain, which is from the

thyroid

> and

> > when

> > > > that's fixed, I will lose weight and the liver

enzymes

> will

> > go

> > > down.

> > > > At the same time, going through menopause and the

> hotflashes

> > are

> > > the

> > > > absolute worst - but - my regular doctor doesn't want

to

> deal

> > > with my

> > > > hormones until my thyroid is straightened out.

> > > >

> > > > SO - I'm a mess and nobody will touch me until the

> > > endocrinologist

> > > > straightens out my thyroid - and the only thing he

does

> is

> > look

> > > at my

> > > > labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!!

Did

> I

> > > mention

> > > > I'm getting cranky??

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > --------------------------------------------------------

----

> ----

> > ----

> > > ----------

> > > >

Link to comment
Share on other sites

Guest guest

How is your appetite? When my T3 is high, my appetite is ravenous and I gain

weight...just a thought...

Kate

I am so frustrated

> > > >

> > > >

> > > >

> > > > Last December, my doc did some lab work and called me

to

> tell

> > me

> > > that

> > > > I was hyperthyroid. TSH was 0.09 and T4 was 1.95.

He

> sent

> > me to

> > > an

> > > > endocrinologist, who did more lab work along with

RAIU

> test.

> > > Follow

> > > > up with him - he said " hmmm, well everything looks

> normal.

> > Tell

> > > you

> > > > what - let's check it again in 3 weeks. " So we check

> again

> > in 3

> > > > weeks, and he says " hmmm, you are hyPOthyroid. TSH

is

> now

> > 8.25

> > > and

> > > > T4 is low. Let's check it again in 3 weeks. " So we

> check

> > again

> > > in 3

> > > > weeks, and he says " hmmm... well, TSH is coming back

into

> the

> > > normal

> > > > range 4.25. " (I think that's 'old' normal range

isn't

> > it??). He

> > > > says (you'll never guess) " hmmm... let's check again

in 3

> > weeks " .

> > > >

> > > > I'm sick of this guy. He's the ONLY endocrinologist

in

> my

> > > county,

> > > > which doesn't give me a lot of choice. In the

meantime,

> it's

> > > been

> > > > months and months. I now have elevated liver enzymes

> from

> > rapid

> > > > weight gain, I'm gaining weight on a diet of lettuce

and

> > water,

> > > > working out like a madwoman. The hepatologist says

the

> liver

> > > problem

> > > > is from the rapid weight gain, which is from the

thyroid

> and

> > when

> > > > that's fixed, I will lose weight and the liver

enzymes

> will

> > go

> > > down.

> > > > At the same time, going through menopause and the

> hotflashes

> > are

> > > the

> > > > absolute worst - but - my regular doctor doesn't want

to

> deal

> > > with my

> > > > hormones until my thyroid is straightened out.

> > > >

> > > > SO - I'm a mess and nobody will touch me until the

> > > endocrinologist

> > > > straightens out my thyroid - and the only thing he

does

> is

> > look

> > > at my

> > > > labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!!

Did

> I

> > > mention

> > > > I'm getting cranky??

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > --------------------------------------------------------

----

> ----

> > ----

> > > ----------

> > > >

Link to comment
Share on other sites

Guest guest

My appetite is ravenous too. Trying to find someone who can give me

REAL direction in terms of diet and exercise has been a challenge. I

get advice like " eat less, exercise more... " Really?? Gee, wish I'd

thought of that. I hate sounding like this, it's just incredibly

frustrating that I can't get anyone to help me. I've spent my entire

life eating whatever I wanted to - I have no clue how to diet so I'm

honestly looking for real help and I can't find it. Even my GP

said " give up soda, drink 8 glasses of water a day, and don't eat

anything after dinner " . That's great advice, but for someone with

thyroid issues, it's like spitting in the wind. I followed his

advice on diet and I joined a fitness center. I exercise 60 minutes

a day - combination of cardio and weights. Nothing. The best I've

managed to do is slooowww down the weight GAIN. It's all very

discouraging and demotivating.

> > > > > Hi Dawn

> > > > > You must be so very frustrated. Have you had

thyroid

> > disease

> > > > diagnosed before? The way you're bouncing back and

forth

> > makes

> > > me

> > > > think of Hashi's. But I don't know much about it. I

do

> > > understand

> > > > rapid weight gain from thyroid problems, having

gained 40

> > pounds

> > > in

> > > > the first six months of this disease (previous normal

for

> me

> > was

> > > 100

> > > > lbs). I now am balanced five years later and am

still

> > > overweight.

> > > > It seems that no matter how hard I try, I continue to

> gain

> > > weight,

> > > > slowly. I had elevated alk phos while I was hyper

but

> have

> > not

> > > had

> > > > it since. This is a slow to treat kind of disease

and

> you're

> > > lucky

> > > > to be seen every three weeks, believe it or not.

While

> > you're

> > > > bouncing around, it might be an idea to get a bone

> density

> > scan

> > > > done. Hyperthyroidism can drain your calcium. Take

the

> time

> > to

> > > > become well informed about your disease. There are

blood

> > tests

> > > that

> > > > I believe can identify your particular antibodies.

Ask

> any

> > > questions

> > > > you think of.

> > > > > Kate

> > > > > I am so frustrated

> > > > >

> > > > >

> > > > >

> > > > > Last December, my doc did some lab work and

called me

> to

> > tell

> > > me

> > > > that

> > > > > I was hyperthyroid. TSH was 0.09 and T4 was

1.95.

> He

> > sent

> > > me to

> > > > an

> > > > > endocrinologist, who did more lab work along with

> RAIU

> > test.

> > > > Follow

> > > > > up with him - he said " hmmm, well everything

looks

> > normal.

> > > Tell

> > > > you

> > > > > what - let's check it again in 3 weeks. " So we

check

> > again

> > > in 3

> > > > > weeks, and he says " hmmm, you are hyPOthyroid.

TSH

> is

> > now

> > > 8.25

> > > > and

> > > > > T4 is low. Let's check it again in 3 weeks. " So

we

> > check

> > > again

> > > > in 3

> > > > > weeks, and he says " hmmm... well, TSH is coming

back

> into

> > the

> > > > normal

> > > > > range 4.25. " (I think that's 'old' normal range

> isn't

> > > it??). He

> > > > > says (you'll never guess) " hmmm... let's check

again

> in 3

> > > weeks " .

> > > > >

> > > > > I'm sick of this guy. He's the ONLY

endocrinologist

> in

> > my

> > > > county,

> > > > > which doesn't give me a lot of choice. In the

> meantime,

> > it's

> > > > been

> > > > > months and months. I now have elevated liver

enzymes

> > from

> > > rapid

> > > > > weight gain, I'm gaining weight on a diet of

lettuce

> and

> > > water,

> > > > > working out like a madwoman. The hepatologist

says

> the

> > liver

> > > > problem

> > > > > is from the rapid weight gain, which is from the

> thyroid

> > and

> > > when

> > > > > that's fixed, I will lose weight and the liver

> enzymes

> > will

> > > go

> > > > down.

> > > > > At the same time, going through menopause and the

> > hotflashes

> > > are

> > > > the

> > > > > absolute worst - but - my regular doctor doesn't

want

> to

> > deal

> > > > with my

> > > > > hormones until my thyroid is straightened out.

> > > > >

> > > > > SO - I'm a mess and nobody will touch me until

the

> > > > endocrinologist

> > > > > straightens out my thyroid - and the only thing

he

> does

> > is

> > > look

> > > > at my

> > > > > labwork every 3 weeks.

GGGGAAAAHHHHHHHHHHHH!!!!!!!

> Did

> > I

> > > > mention

> > > > > I'm getting cranky??

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ----------------------------------------------------

----

> ----

> > ----

> > > ----

> > > > ----------

> > > > >

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Share on other sites

Guest guest

Hi Dawn

If you're ravenous, you might want to rethink taking synthroid and increasing

your appetite! I spoke with a dietician who advised me to write down everything

I ate but I am just too hungry lots of times to want to bother. When I do write

it down, it's pretty easy to pick out things I can do without and not miss. And

also where I'm blowing it. One thing I have found is that if I'm hungry there

is no use pretending anything else. I need something filling to eat. I do

better if I have carrot and celery sticks ready in the fridge. If I have to

make them when I'm hungry I won't bother. I've also started eating a medium

sized bowl of oatmeal in the morning with some brown sugar (not a lot, but

enough to taste). This seems to have knocked off the five pounds I had gained

this past year and I seem to keep it gone.

I found that exercising too much left me so hungry that it was a net 'gain' for

me. Instead I work around the house and walk. It helps to have a project to

do. I do lots of outside stuff on the theory that there's nowhere to sit down

and rest all the time.

Other times, if I'm having a really hungry day, I go out somewhere. Sometimes I

can divert my hunger...

I read that we with thyroid disease could anticipate gaining about 5 pounds a

year. So my goal has become to avoid that gain. I don't know if I'll ever

lose, but in 6 years I've gained only 15 more pounds...Nothing to write home

about but it's a start.

Kate

I am so frustrated

> > > > >

> > > > >

> > > > >

> > > > > Last December, my doc did some lab work and

called me

> to

> > tell

> > > me

> > > > that

> > > > > I was hyperthyroid. TSH was 0.09 and T4 was

1.95.

> He

> > sent

> > > me to

> > > > an

> > > > > endocrinologist, who did more lab work along with

> RAIU

> > test.

> > > > Follow

> > > > > up with him - he said " hmmm, well everything

looks

> > normal.

> > > Tell

> > > > you

> > > > > what - let's check it again in 3 weeks. " So we

check

> > again

> > > in 3

> > > > > weeks, and he says " hmmm, you are hyPOthyroid.

TSH

> is

> > now

> > > 8.25

> > > > and

> > > > > T4 is low. Let's check it again in 3 weeks. " So

we

> > check

> > > again

> > > > in 3

> > > > > weeks, and he says " hmmm... well, TSH is coming

back

> into

> > the

> > > > normal

> > > > > range 4.25. " (I think that's 'old' normal range

> isn't

> > > it??). He

> > > > > says (you'll never guess) " hmmm... let's check

again

> in 3

> > > weeks " .

> > > > >

> > > > > I'm sick of this guy. He's the ONLY

endocrinologist

> in

> > my

> > > > county,

> > > > > which doesn't give me a lot of choice. In the

> meantime,

> > it's

> > > > been

> > > > > months and months. I now have elevated liver

enzymes

> > from

> > > rapid

> > > > > weight gain, I'm gaining weight on a diet of

lettuce

> and

> > > water,

> > > > > working out like a madwoman. The hepatologist

says

> the

> > liver

> > > > problem

> > > > > is from the rapid weight gain, which is from the

> thyroid

> > and

> > > when

> > > > > that's fixed, I will lose weight and the liver

> enzymes

> > will

> > > go

> > > > down.

> > > > > At the same time, going through menopause and the

> > hotflashes

> > > are

> > > > the

> > > > > absolute worst - but - my regular doctor doesn't

want

> to

> > deal

> > > > with my

> > > > > hormones until my thyroid is straightened out.

> > > > >

> > > > > SO - I'm a mess and nobody will touch me until

the

> > > > endocrinologist

> > > > > straightens out my thyroid - and the only thing

he

> does

> > is

> > > look

> > > > at my

> > > > > labwork every 3 weeks.

GGGGAAAAHHHHHHHHHHHH!!!!!!!

> Did

> > I

> > > > mention

> > > > > I'm getting cranky??

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ----------------------------------------------------

----

> ----

> > ----

> > > ----

> > > > ----------

> > > > >

Link to comment
Share on other sites

Guest guest

By the way, I am also on an antidepressant which causes weight gain as a side

effect. What a depressing medication... :)

K

I am so frustrated

> > > > >

> > > > >

> > > > >

> > > > > Last December, my doc did some lab work and

called me

> to

> > tell

> > > me

> > > > that

> > > > > I was hyperthyroid. TSH was 0.09 and T4 was

1.95.

> He

> > sent

> > > me to

> > > > an

> > > > > endocrinologist, who did more lab work along with

> RAIU

> > test.

> > > > Follow

> > > > > up with him - he said " hmmm, well everything

looks

> > normal.

> > > Tell

> > > > you

> > > > > what - let's check it again in 3 weeks. " So we

check

> > again

> > > in 3

> > > > > weeks, and he says " hmmm, you are hyPOthyroid.

TSH

> is

> > now

> > > 8.25

> > > > and

> > > > > T4 is low. Let's check it again in 3 weeks. " So

we

> > check

> > > again

> > > > in 3

> > > > > weeks, and he says " hmmm... well, TSH is coming

back

> into

> > the

> > > > normal

> > > > > range 4.25. " (I think that's 'old' normal range

> isn't

> > > it??). He

> > > > > says (you'll never guess) " hmmm... let's check

again

> in 3

> > > weeks " .

> > > > >

> > > > > I'm sick of this guy. He's the ONLY

endocrinologist

> in

> > my

> > > > county,

> > > > > which doesn't give me a lot of choice. In the

> meantime,

> > it's

> > > > been

> > > > > months and months. I now have elevated liver

enzymes

> > from

> > > rapid

> > > > > weight gain, I'm gaining weight on a diet of

lettuce

> and

> > > water,

> > > > > working out like a madwoman. The hepatologist

says

> the

> > liver

> > > > problem

> > > > > is from the rapid weight gain, which is from the

> thyroid

> > and

> > > when

> > > > > that's fixed, I will lose weight and the liver

> enzymes

> > will

> > > go

> > > > down.

> > > > > At the same time, going through menopause and the

> > hotflashes

> > > are

> > > > the

> > > > > absolute worst - but - my regular doctor doesn't

want

> to

> > deal

> > > > with my

> > > > > hormones until my thyroid is straightened out.

> > > > >

> > > > > SO - I'm a mess and nobody will touch me until

the

> > > > endocrinologist

> > > > > straightens out my thyroid - and the only thing

he

> does

> > is

> > > look

> > > > at my

> > > > > labwork every 3 weeks.

GGGGAAAAHHHHHHHHHHHH!!!!!!!

> Did

> > I

> > > > mention

> > > > > I'm getting cranky??

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ----------------------------------------------------

----

> ----

> > ----

> > > ----

> > > > ----------

> > > > >

Link to comment
Share on other sites

Guest guest

I've had the same problem with my weight, and my endocrinologists has

been no help. In fact, when I first went on 10 mg of methimazole and

gained 20 pounds, all she could say was " that's really hard to do. "

Brilliant. Thanks alot.

Anyway, like you, I've eaten whatever I wanted for most of my life, so

learning to eat differently has been a challenge of mine as well. The

routine I've established is a calorie intake around 1300-1500, I eat

every three hours, and I exercise, though its inconsistent. Still, and

sadly enough, I've only started to see results from this routine since

my methimazole has been reduced to 2.5 mg and my thyroid levels seem to

be leveling out.

I worked on my nutrition through an online program offered for free by

my insurance company. Is anything like that available to you?

Dawn wrote on 4/20/2005, 5:27 AM:

> My appetite is ravenous too. Trying to find someone who can give me

> REAL direction in terms of diet and exercise has been a challenge. I

> get advice like " eat less, exercise more... " Really?? Gee, wish I'd

> thought of that. I hate sounding like this, it's just incredibly

> frustrating that I can't get anyone to help me. I've spent my entire

> life eating whatever I wanted to - I have no clue how to diet so I'm

> honestly looking for real help and I can't find it. Even my GP

> said " give up soda, drink 8 glasses of water a day, and don't eat

> anything after dinner " . That's great advice, but for someone with

> thyroid issues, it's like spitting in the wind. I followed his

> advice on diet and I joined a fitness center. I exercise 60 minutes

> a day - combination of cardio and weights. Nothing. The best I've

> managed to do is slooowww down the weight GAIN. It's all very

> discouraging and demotivating.

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Share on other sites

Guest guest

Hi Dawn,

I don't have answers for you yet. Your condition is an interesting one and makes

me very

curious as to why your body fluctuates back and forth between hyperthyroidism

and

hypothyroidism. And especially in such a short period of 3 weeks.

I do know that thyroid disorders affect the liver tremendously. They put quite a

bit of

stress on the liver. In my situation, I was diagnosed with " weak liver " by an

herbalist and

after taking two weeks of an herbal formulas named " Ching Gan " (meaning " to

clear the

liver " ), my condition improved. Not a whole lot, but enough to make my

hyperthyroidism a

little more tolerable.

Anyhow, can you describe for me the condition of your thyroid? Meaning, do you

have a

large goiter? Is it soft or hard? Do you feel any nodules (or bumps) in the

goiter? This may

help me to understand your condition.

Hang in there Dawn. I certainly can relate to your situation with your

endocrinologist. It's

often very frustrating when you begin to have second thoughts about the

competency of

your doctor. I often wonder if they really care about their patients. And if the

decisions

they make lead to their benefits or simply routines to pad their own bottomline.

In the meantime, any additional description about your condition and how you

feel may

certainly help.

joey

>

> Last December, my doc did some lab work and called me to tell me that

> I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He sent me to an

> endocrinologist, who did more lab work along with RAIU test. Follow

> up with him - he said " hmmm, well everything looks normal. Tell you

> what - let's check it again in 3 weeks. " So we check again in 3

> weeks, and he says " hmmm, you are hyPOthyroid. TSH is now 8.25 and

> T4 is low. Let's check it again in 3 weeks. " So we check again in 3

> weeks, and he says " hmmm... well, TSH is coming back into the normal

> range 4.25. " (I think that's 'old' normal range isn't it??). He

> says (you'll never guess) " hmmm... let's check again in 3 weeks " .

>

> I'm sick of this guy. He's the ONLY endocrinologist in my county,

> which doesn't give me a lot of choice. In the meantime, it's been

> months and months. I now have elevated liver enzymes from rapid

> weight gain, I'm gaining weight on a diet of lettuce and water,

> working out like a madwoman. The hepatologist says the liver problem

> is from the rapid weight gain, which is from the thyroid and when

> that's fixed, I will lose weight and the liver enzymes will go down.

> At the same time, going through menopause and the hotflashes are the

> absolute worst - but - my regular doctor doesn't want to deal with my

> hormones until my thyroid is straightened out.

>

> SO - I'm a mess and nobody will touch me until the endocrinologist

> straightens out my thyroid - and the only thing he does is look at my

> labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did I mention

> I'm getting cranky??

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In a message dated 4/21/2005 6:47:48 AM Eastern Daylight Time,

Rainbo8042@... writes:

very confusing to me - do I go low carb? low fat? low sugar? I

find myself justifying whatever I eat by putting it into one of those

categories. But since I'm all over the map on what I eat, it just

doesn't work

It is difficult to figure out how to eat sensibly these days, what w/all the

conflicting advice out there. I have studied nutrition and diet (on my own),

as I am committed to eating a healthy diet and keeping my size 6/8 figure (I

am 5'9 " ) into my dotage (I am currently middle-aged).

I exercise 6 days a week, a mixture of cardio, strength training and Pilates.

I think regular, sustained exercise is a must for anyone who seeks to

maintain their health and appearance. I also believe, after much reading, that

the

South Beach diet offers the best eating plan for life.

I don't believe in dieting, as, when you go off of the diet, you just gain

the weight back. So, I call my eating plan a " live-it, " --we have to live it for

life. I have made changes in the way I eat gradually over the past 20 years,

but the key is to sustain these changes and make them a way of life.

I try to eat 1,800-2,000 calories a day (I don't make a fetish of counting

them, though, just use a ballpark estimate), no more than 35 grams of fat, and

under 150 grams of carbs daily.

South Beach has several phases. In the first phase, you eliminate all

sugars, refined carbs and alcohols, to eliminate cravings. Then you

re-introduce

healthy carbs, and eat a balanced, sensible diet. There are lots of ideas and

recipes in the book.

I recommend this book to all my clients who have weight issues, and most lose

about 12 lbs. in the first 2 weeks (Phase l). Of course, those of us with

thyroid issues have other problems, but a healthy diet, and sustained, regular

exercise, can only help us, even if we are not as thin as we'd like.

I hope this has been helpful.

AntJoan

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Hi ,

Thanks for responding to my message. This is all still pretty new to

me and I guess I'm beginning to understand why I'm such a puzzle to

my endocrinologist. But part of my frustration is that he

continually asks me if I'm " taking someone else's medicine " , which is

really starting to offend me. I understand why he asks - I don't

understand why he continues to ask after I have told him multiple

times " NO! " . The implication is that I'm lying to him, and I

seriously resent that. Does he think I'm having fun? And I also

wonder why - if this is so weird - he isn't looking past my thyroid

to other possible causes. Pituitary? Parathyroid? Cushings? Maybe

I'm being paranoid, I don't know, maybe those other things are just

too rare? Am I the only one that's curious about the cause? I don't

feel like I HAVE a diagnosis - he just continually wants to " check

again in 3 weeks " in hopes that he can settle on hyper or hypo. I

don't think I've had 2 consistant lab test results yet, other than

high TPO, which he said indicates Hashimoto's. I don't have a

goiter. My thyroid (like my lab tests) waxes and wanes. Sometimes

it's swollen, sometimes it's normal. I do think my elevated liver

enzymes are directly related to rapid weight gain. At least tests

and an ultrasound found no other cause so I'm not going to stress

about that right now. I have a feeling if I can get my thyroid

issues under control, the weight gain and liver enzyme problems will

resolve themselves. (At least I hope so!)

> >

> > Last December, my doc did some lab work and called me to tell me

that

> > I was hyperthyroid. TSH was 0.09 and T4 was 1.95. He sent me to

an

> > endocrinologist, who did more lab work along with RAIU test.

Follow

> > up with him - he said " hmmm, well everything looks normal. Tell

you

> > what - let's check it again in 3 weeks. " So we check again in 3

> > weeks, and he says " hmmm, you are hyPOthyroid. TSH is now 8.25

and

> > T4 is low. Let's check it again in 3 weeks. " So we check again

in 3

> > weeks, and he says " hmmm... well, TSH is coming back into the

normal

> > range 4.25. " (I think that's 'old' normal range isn't it??). He

> > says (you'll never guess) " hmmm... let's check again in 3 weeks " .

> >

> > I'm sick of this guy. He's the ONLY endocrinologist in my

county,

> > which doesn't give me a lot of choice. In the meantime, it's

been

> > months and months. I now have elevated liver enzymes from rapid

> > weight gain, I'm gaining weight on a diet of lettuce and water,

> > working out like a madwoman. The hepatologist says the liver

problem

> > is from the rapid weight gain, which is from the thyroid and when

> > that's fixed, I will lose weight and the liver enzymes will go

down.

> > At the same time, going through menopause and the hotflashes are

the

> > absolute worst - but - my regular doctor doesn't want to deal

with my

> > hormones until my thyroid is straightened out.

> >

> > SO - I'm a mess and nobody will touch me until the

endocrinologist

> > straightens out my thyroid - and the only thing he does is look

at my

> > labwork every 3 weeks. GGGGAAAAHHHHHHHHHHHH!!!!!!! Did I

mention

> > I'm getting cranky??

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LOL , I could certainly relate to the " Brilliant. Thanks

alot. " Thank you for the tips, they are worth trying. Learning how

to count calories is going to be a new challenge in itself and it's

all very confusing to me - do I go low carb? low fat? low sugar? I

find myself justifying whatever I eat by putting it into one of those

categories. But since I'm all over the map on what I eat, it just

doesn't work. Throw a few thyroid issues in there, and I'm sunk.

Maybe I just need to forget categories and simply count calories. I

don't have any resources available to me through my insurance, so I'm

just struggling to figure it all out myself. Sounds like you have a

great plan there.

> I've had the same problem with my weight, and my endocrinologists

has

> been no help. In fact, when I first went on 10 mg of methimazole

and

> gained 20 pounds, all she could say was " that's really hard to do. "

> Brilliant. Thanks alot.

>

> Anyway, like you, I've eaten whatever I wanted for most of my life,

so

> learning to eat differently has been a challenge of mine as well.

The

> routine I've established is a calorie intake around 1300-1500, I

eat

> every three hours, and I exercise, though its inconsistent. Still,

and

> sadly enough, I've only started to see results from this routine

since

> my methimazole has been reduced to 2.5 mg and my thyroid levels

seem to

> be leveling out.

>

> I worked on my nutrition through an online program offered for free

by

> my insurance company. Is anything like that available to you?

>

> Dawn wrote on 4/20/2005, 5:27 AM:

>

> > My appetite is ravenous too. Trying to find someone who can

give me

> > REAL direction in terms of diet and exercise has been a

challenge. I

> > get advice like " eat less, exercise more... " Really?? Gee,

wish I'd

> > thought of that. I hate sounding like this, it's just incredibly

> > frustrating that I can't get anyone to help me. I've spent my

entire

> > life eating whatever I wanted to - I have no clue how to diet so

I'm

> > honestly looking for real help and I can't find it. Even my GP

> > said " give up soda, drink 8 glasses of water a day, and don't eat

> > anything after dinner " . That's great advice, but for someone

with

> > thyroid issues, it's like spitting in the wind. I followed his

> > advice on diet and I joined a fitness center. I exercise 60

minutes

> > a day - combination of cardio and weights. Nothing. The best

I've

> > managed to do is slooowww down the weight GAIN. It's all very

> > discouraging and demotivating.

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Kate,

You're right, and I am rethinking the synthroid. I think the Dr. is

going this route simply to appease me and my frustration over the

fact that I can't lose weight. I don't think he has really settled

on a diagnosis and planned any kind of long term treatment - not

while I'm bouncing around like a yo-yo. So honestly, I think the

synthroid at this point is totally " optional " and I'm thinking that I

don't need more appetite! Your suggestions on how to curb the hunger

are realistic, helpful, and some of the best advice I've received -

thank you.

Quick question - on the oatmeal - do you use the instant kind or cook

it from scratch?

> > > > > > Hi Dawn

> > > > > > You must be so very frustrated. Have you had

> thyroid

> > > disease

> > > > > diagnosed before? The way you're bouncing back

and

> forth

> > > makes

> > > > me

> > > > > think of Hashi's. But I don't know much about

it. I

> do

> > > > understand

> > > > > rapid weight gain from thyroid problems, having

> gained 40

> > > pounds

> > > > in

> > > > > the first six months of this disease (previous

normal

> for

> > me

> > > was

> > > > 100

> > > > > lbs). I now am balanced five years later and am

> still

> > > > overweight.

> > > > > It seems that no matter how hard I try, I

continue to

> > gain

> > > > weight,

> > > > > slowly. I had elevated alk phos while I was

hyper

> but

> > have

> > > not

> > > > had

> > > > > it since. This is a slow to treat kind of

disease

> and

> > you're

> > > > lucky

> > > > > to be seen every three weeks, believe it or not.

> While

> > > you're

> > > > > bouncing around, it might be an idea to get a

bone

> > density

> > > scan

> > > > > done. Hyperthyroidism can drain your calcium.

Take

> the

> > time

> > > to

> > > > > become well informed about your disease. There

are

> blood

> > > tests

> > > > that

> > > > > I believe can identify your particular

antibodies.

> Ask

> > any

> > > > questions

> > > > > you think of.

> > > > > > Kate

> > > > > > I am so frustrated

> > > > > >

> > > > > >

> > > > > >

> > > > > > Last December, my doc did some lab work and

> called me

> > to

> > > tell

> > > > me

> > > > > that

> > > > > > I was hyperthyroid. TSH was 0.09 and T4 was

> 1.95.

> > He

> > > sent

> > > > me to

> > > > > an

> > > > > > endocrinologist, who did more lab work along

with

> > RAIU

> > > test.

> > > > > Follow

> > > > > > up with him - he said " hmmm, well everything

> looks

> > > normal.

> > > > Tell

> > > > > you

> > > > > > what - let's check it again in 3 weeks. " So

we

> check

> > > again

> > > > in 3

> > > > > > weeks, and he says " hmmm, you are

hyPOthyroid.

> TSH

> > is

> > > now

> > > > 8.25

> > > > > and

> > > > > > T4 is low. Let's check it again in 3

weeks. " So

> we

> > > check

> > > > again

> > > > > in 3

> > > > > > weeks, and he says " hmmm... well, TSH is

coming

> back

> > into

> > > the

> > > > > normal

> > > > > > range 4.25. " (I think that's 'old' normal

range

> > isn't

> > > > it??). He

> > > > > > says (you'll never guess) " hmmm... let's

check

> again

> > in 3

> > > > weeks " .

> > > > > >

> > > > > > I'm sick of this guy. He's the ONLY

> endocrinologist

> > in

> > > my

> > > > > county,

> > > > > > which doesn't give me a lot of choice. In

the

> > meantime,

> > > it's

> > > > > been

> > > > > > months and months. I now have elevated liver

> enzymes

> > > from

> > > > rapid

> > > > > > weight gain, I'm gaining weight on a diet of

> lettuce

> > and

> > > > water,

> > > > > > working out like a madwoman. The

hepatologist

> says

> > the

> > > liver

> > > > > problem

> > > > > > is from the rapid weight gain, which is from

the

> > thyroid

> > > and

> > > > when

> > > > > > that's fixed, I will lose weight and the

liver

> > enzymes

> > > will

> > > > go

> > > > > down.

> > > > > > At the same time, going through menopause and

the

> > > hotflashes

> > > > are

> > > > > the

> > > > > > absolute worst - but - my regular doctor

doesn't

> want

> > to

> > > deal

> > > > > with my

> > > > > > hormones until my thyroid is straightened

out.

> > > > > >

> > > > > > SO - I'm a mess and nobody will touch me

until

> the

> > > > > endocrinologist

> > > > > > straightens out my thyroid - and the only

thing

> he

> > does

> > > is

> > > > look

> > > > > at my

> > > > > > labwork every 3 weeks.

> GGGGAAAAHHHHHHHHHHHH!!!!!!!

> > Did

> > > I

> > > > > mention

> > > > > > I'm getting cranky??

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > ------------------------------------------------

----

> ----

> > ----

> > > ----

> > > > ----

> > > > > ----------

> > > > > >

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On the oatmeal, I use the 'minute' oatmeal and just pour some in a bowl and pour

boiling water over it, just like instant oatmeal. It makes up just like the

instant oatmeal pkts without the additional chemicals and sweeteners. I don't

take milk in the morning as it would reduce my thyroid meds...Breakfast is a

tough meal I've found, especially without milk. As I have IBS, I also can't

drink OJ or any coffee or tea or soda for that matter..

I would cheerfully do without breakfast but I go for accupuncture in the morning

and need food before that. Also it is supposed to be a very important meal in

the day. I sometimes eat some fruit after my oatmeal if I'm still hungry.

What do other people eat for breakfast?

Kate

I am so frustrated

> > > > > >

> > > > > >

> > > > > >

> > > > > > Last December, my doc did some lab work and

> called me

> > to

> > > tell

> > > > me

> > > > > that

> > > > > > I was hyperthyroid. TSH was 0.09 and T4 was

> 1.95.

> > He

> > > sent

> > > > me to

> > > > > an

> > > > > > endocrinologist, who did more lab work along

with

> > RAIU

> > > test.

> > > > > Follow

> > > > > > up with him - he said " hmmm, well everything

> looks

> > > normal.

> > > > Tell

> > > > > you

> > > > > > what - let's check it again in 3 weeks. " So

we

> check

> > > again

> > > > in 3

> > > > > > weeks, and he says " hmmm, you are

hyPOthyroid.

> TSH

> > is

> > > now

> > > > 8.25

> > > > > and

> > > > > > T4 is low. Let's check it again in 3

weeks. " So

> we

> > > check

> > > > again

> > > > > in 3

> > > > > > weeks, and he says " hmmm... well, TSH is

coming

> back

> > into

> > > the

> > > > > normal

> > > > > > range 4.25. " (I think that's 'old' normal

range

> > isn't

> > > > it??). He

> > > > > > says (you'll never guess) " hmmm... let's

check

> again

> > in 3

> > > > weeks " .

> > > > > >

> > > > > > I'm sick of this guy. He's the ONLY

> endocrinologist

> > in

> > > my

> > > > > county,

> > > > > > which doesn't give me a lot of choice. In

the

> > meantime,

> > > it's

> > > > > been

> > > > > > months and months. I now have elevated liver

> enzymes

> > > from

> > > > rapid

> > > > > > weight gain, I'm gaining weight on a diet of

> lettuce

> > and

> > > > water,

> > > > > > working out like a madwoman. The

hepatologist

> says

> > the

> > > liver

> > > > > problem

> > > > > > is from the rapid weight gain, which is from

the

> > thyroid

> > > and

> > > > when

> > > > > > that's fixed, I will lose weight and the

liver

> > enzymes

> > > will

> > > > go

> > > > > down.

> > > > > > At the same time, going through menopause and

the

> > > hotflashes

> > > > are

> > > > > the

> > > > > > absolute worst - but - my regular doctor

doesn't

> want

> > to

> > > deal

> > > > > with my

> > > > > > hormones until my thyroid is straightened

out.

> > > > > >

> > > > > > SO - I'm a mess and nobody will touch me

until

> the

> > > > > endocrinologist

> > > > > > straightens out my thyroid - and the only

thing

> he

> > does

> > > is

> > > > look

> > > > > at my

> > > > > > labwork every 3 weeks.

> GGGGAAAAHHHHHHHHHHHH!!!!!!!

> > Did

> > > I

> > > > > mention

> > > > > > I'm getting cranky??

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > ------------------------------------------------

----

> ----

> > ----

> > > ----

> > > > ----

> > > > > ----------

> > > > > >

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  • 1 year later...

Hello. I'm so sorry about the Orthotist not being friendly and that

he is apparently not experienced. Has Sammy's head been getting

worse with the band? Did you think it was a bad fit? Our Ortho

actually added a small amount of foam at the neckline on 's

band and we never had any problems with it. It was to stop it from

rotating so much in the very beginning, and then he took it out.

Yes, this is usually a NO NO, but we never had any issues and

got wonderful correction. I was a little confused about the thing

you said about the band sitting on his browline. 's sat just

barely above her brow line and as far as I thought, the more it

covers of the forehead, the better in order to fix forehead

bossing. Maybe I'm just confused on what you were saying.

Anyway... best of luck with everything and keep us updated.

Jen :)

(24 mo), tort resolved, Hanger Band Grad

(4.5 years)

>

> I decided to do the group chat tonight and got talking to .

Talking

> about Sammy's helmet and how to adjust for sleeping. Our talking

lead to my

> ortho and his experience. I didn't know much about his experience

but that

> he got us a hanger band and that he was not that friendly with

Sammy. I did

> not know that you are not suppose to put any foam inside the

helmet and that

> is one of the first things that the ortho did when we got the

helmet. It

> didn't fit right in the back so he inserted foam in it. He also

told us to

> keep it low, along his eye brow line or else it would not help.

Found out

> from that there are all wrong. I am so mad. I am not having

Sammy wear

> this anymore and will be contacting this office as soon as they

open Monday.

> I am getting the insurance company reimbursed and going somewhere

else.

> After thinking of all the little things that went on I should of

known this

> was not good and the guy didn't know what he was doing. I feel so

bad that I

> pretty much started crying when I realized talking to . I

feel better

> now after talking to her but it is so hard to imagine that I could

of let

> someone hurt my babies head shape even more ! I will update with

what goes

> on with getting the money back and a new scan or casting.

>

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Hit goes down so much to his eyes that it makes him squint with one eye

sometimes. Does that make more sense ?

<http://www.tickercentral.com>

Re: I am so frustrated

Hello. I'm so sorry about the Orthotist not being friendly and that

he is apparently not experienced. Has Sammy's head been getting

worse with the band? Did you think it was a bad fit? Our Ortho

actually added a small amount of foam at the neckline on 's

band and we never had any problems with it. It was to stop it from

rotating so much in the very beginning, and then he took it out.

Yes, this is usually a NO NO, but we never had any issues and

got wonderful correction. I was a little confused about the thing

you said about the band sitting on his browline. 's sat just

barely above her brow line and as far as I thought, the more it

covers of the forehead, the better in order to fix forehead

bossing. Maybe I'm just confused on what you were saying.

Anyway... best of luck with everything and keep us updated.

Jen :)

(24 mo), tort resolved, Hanger Band Grad

(4.5 years)

>

> I decided to do the group chat tonight and got talking to .

Talking

> about Sammy's helmet and how to adjust for sleeping. Our talking

lead to my

> ortho and his experience. I didn't know much about his experience

but that

> he got us a hanger band and that he was not that friendly with

Sammy. I did

> not know that you are not suppose to put any foam inside the

helmet and that

> is one of the first things that the ortho did when we got the

helmet. It

> didn't fit right in the back so he inserted foam in it. He also

told us to

> keep it low, along his eye brow line or else it would not help.

Found out

> from that there are all wrong. I am so mad. I am not having

Sammy wear

> this anymore and will be contacting this office as soon as they

open Monday.

> I am getting the insurance company reimbursed and going somewhere

else.

> After thinking of all the little things that went on I should of

known this

> was not good and the guy didn't know what he was doing. I feel so

bad that I

> pretty much started crying when I realized talking to . I

feel better

> now after talking to her but it is so hard to imagine that I could

of let

> someone hurt my babies head shape even more ! I will update with

what goes

> on with getting the money back and a new scan or casting.

>

For more plagio info

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  • 3 months later...

Hi ,

This is only my humble opinion. If she can't go to school, it is a

quality of life issue. She should be well enough to go to school. I

know that it can be difficult. I have lost count on how many days

n has missed this year. So I went to our doctor and told him.

It was decided to put her back on enbrel. She was on enbrel and mtx

before the MAS. After the MAS, we were told to resume medications

and I only started up on the mtx. I was a bit scared of the enbrel.

There have been incidences of where enbrel was used to pull a child

out of MAS, and then there are cases where enbrel put the child into

MAS. So you can see what was driving my fear. Anyway, n is

back on enbrel. Is she perfect? No. n has NEVER been symptom

free. The doctor said our next option is kineret, but n doesn't

want it, and she is nearly 18 so she has the final decision.

I think you have given mtx long enough. You should be seeing some

improvement, and so far you haven't. Where does that leave you? The

next step would be a biological. As I see it at this point, that

would be enbrel, remicade, or kineret. More and more docs seem to be

jumping straight to kineret for the systemics. The drawback is that

it is a daily shot, and it supposedly hurts. The good news is that

she may feel like a 100 bucks on it. I know our doctor shies away

from remicade. We just had our JRA meeting and he mentioned that he

has experienced a lot of side effects from it. He doesn't preclude

it, but it isn't his first choice. But then look at Nicky Noodle.

He is doing pretty good on Remicade. That leaves enbrel. A once or

twice a week shot. It may work and it may not. No telling. All

the biologicals work quickly. Our doctor said we would know in 2-4

weeks if the enbrel was helping.

You can have damage without swelling. You may want to pursue imaging

to detect the damage. After the latest article about MRI, I would

insist on a portable MRI of the wrists and hands if I ever wanted to

know about n's damage. There is no radiation that way. The

portable unit is fairly new and may be hard to find. I wonder, if I

really need to know about the damage. It is damage. There is

nothing I can do about it, and it would only make me feel horrible.

We are trying every medication possible to keep the disease at bay so

do I really need to know what the disease is doing to her body?

Take care, (n, 17, systemic)

On Nov 29, 2006, at 12:09 PM, sonia1md wrote:

> Hello All,

>

> Aundrea had been home all week from school. She has missed nearly 5

> weeks of school this year.

>

> She had a great Thanksgiving and was very active with friends and

> family. When reading 's post I was reminded about how

> important rest is and how Aundrea tends to go 90 to nothing when she

> feels good which is probably why she tends to crash by Sunday night.

>

> Over Thanksgiving she was running, biking, playing all day long.

> Since Sunday night her joint pain has been nearly constant. Its in

> more joints than usual. Fingers, wrists, knees, ankles and toes.

> She doesn't think a joint hurts but when I manipulate it she

> goes, " oh I guess that one does hurt " . There is no swelling or

> warmth to touch. She is running a fever and hasn't had fevers since

> year one of diagnosis. The rash comes and goes but for the most

> part has been a non-issue.

>

> So as many of you know we re-started Mtx in July. She was on 15mg

> weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and

> started using phenegan for anti-nausea med. I believe she has had 5

> doses on the 20 mg.

>

> So, have I been patient enough. Do I need to give this higher dose

> more time before I rule it out and say its not helping? Should we

> try increasing to 25mg and see what happens? Is it time to add a

> different drug? If so which one? I have always thought that since

> aundrea doesn't have swelling then there can't be any joint

> destruction taking place...Its more of a pain issue and quality of

> life issue...Do you think that is true or can destruction take place

> even if you can't see swelling. They have never done x-rays/mri on

> Aundrea. Is that a normal procedure to have done and does it give

> any useful information as far as treatment.

>

> Ok, I am full of questions today. Sorry about all of that but I am

> just not sure where to go from here. I am seriously thinking of

> looking into homeschooling or seeing what the options are for

> sending her to school part time.

>

> Thanks in advance for any suggestions you may have to offer.

>

> (Aundrea 11 systemic jra/gerd)

>

>

>

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,

I know what you mean about home schooling. I am beginning to consider it for

Elaney also. She seems to catch EVERYTHING that goes around. The problem

with home schooling for Elaney is that she also has learning disabilities. Can

you get a para to come to your house???---I really hope Aundrea gets better

and

STAYS that way.--- & Elaney (12 poly & a whole lot of other issues)

sonia1md <sonia1md@...> wrote:

Hello All,

Aundrea had been home all week from school. She has missed nearly 5

weeks of school this year.

She had a great Thanksgiving and was very active with friends and

family. When reading 's post I was reminded about how

important rest is and how Aundrea tends to go 90 to nothing when she

feels good which is probably why she tends to crash by Sunday night.

Over Thanksgiving she was running, biking, playing all day long.

Since Sunday night her joint pain has been nearly constant. Its in

more joints than usual. Fingers, wrists, knees, ankles and toes.

She doesn't think a joint hurts but when I manipulate it she

goes, " oh I guess that one does hurt " . There is no swelling or

warmth to touch. She is running a fever and hasn't had fevers since

year one of diagnosis. The rash comes and goes but for the most

part has been a non-issue.

So as many of you know we re-started Mtx in July. She was on 15mg

weekly sub Q. On Oct 21 we increased MTX to 20 mg weekly and

started using phenegan for anti-nausea med. I believe she has had 5

doses on the 20 mg.

So, have I been patient enough. Do I need to give this higher dose

more time before I rule it out and say its not helping? Should we

try increasing to 25mg and see what happens? Is it time to add a

different drug? If so which one? I have always thought that since

aundrea doesn't have swelling then there can't be any joint

destruction taking place...Its more of a pain issue and quality of

life issue...Do you think that is true or can destruction take place

even if you can't see swelling. They have never done x-rays/mri on

Aundrea. Is that a normal procedure to have done and does it give

any useful information as far as treatment.

Ok, I am full of questions today. Sorry about all of that but I am

just not sure where to go from here. I am seriously thinking of

looking into homeschooling or seeing what the options are for

sending her to school part time.

Thanks in advance for any suggestions you may have to offer.

(Aundrea 11 systemic jra/gerd)

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