Re: The more I read the more confused I become...

[Guest guest]

We're all trying to figure it all out! You know, I put some "techy" posts to articles yesterday on the site, having to do with all the forms of thyroiditis, and the small differences between them. The trouble with the articles is that they were very technical and difficult to understand, when it came to all that medical jargon, but it did give you an idea as to what those differences are----that is, if you read only ONE of the articles. I noticed that from one opinion to the next, the so-called experts even have trouble deciding whether Hashimoto's is the same thyroiditis as Chronic Lymphoid Thyroiditis. One article calls them the same (not just similar). The next article says they are two different forms of thyroiditis, with many similarities, and going "Huh????". More confused than ever at some points. I think that this is a field of very vast disagreement. None of them seem to be able to get their heads together on this. Meanwhile, many are suffering.

Re: The more I read the more confused I become...

Hi Nita,I don't have any information for you myself, but there is quite a discussion going on over at about.com thyroid forums under the Graves folder on vegetarian eating and graves and soy. You may want to pop over there and see what they are saying it may give you some insight or "food for thought". It starts with post #48479.1.As for endo's feeling or not feeling your thyroid - my first endo felt it every visit, endo #2 felt it only the first visit - then never again - even when I told him the anthesiologist had trouble getting the tube down my throat for surgery - it took him 45 minutes. My PCP just felt it last week and ordered a second ultrasound to compare with the first one done in 2000. I do feel something there. So as to what is usual or not I can't say? Wish I could help you more, I am still trying to figure Hashi's out after 4 years <<<sigh>>>.Janie>

[Guest guest]

I take one overall supplement plus selenium 200 mg, plenty of B5, evening primrose oil, gingko biloba (for memory and sharpness;not that I have a wonderful memory these days, hehe), NO iron, as I have plenty of good red blood cells, a calciummag + D supplement, extra C, eyebright, black cohosh, NO soy (since I'm hypo, not hyper), imipramine for depression, and levoxyl 125 mcgs---and am working on getting the Armour because I feel that I'm probably not converting very well. (That's the main reason I started taking the selenium). I TRY to eat a high protein, low carb diet, though I have all kinds of trouble there because I absolutely crave chocolate and sweets and other carbs. And I eat 5 small meals a day, instead of 3 whopping ones. That seems to work better for me, though I'm starting to form a bit of spare tire in the middle that I never had before a year ago. I'm 51 now, and had a hysterectomy in my mid 30's. As for the links, there are thousands of them out there, it's just that almost none of them agree on anything!

The more I read the more confused I become...

Prior to my diagnosis of Graves' I saw a cardiologist to R/O cardiovascular diasease (due to the palpitations, chest/neck/head pressure, etc.). Following an exam (during which he felt my thyroid), he recommended that I follow with an endo as he thought everything was thyroid related. I mentioned to him that I was HypoT 3 yrs. ago & was on a very low dose of Synthroid (I don't remember dosage, but it was the lowest they make) for about 6 mos.The endo who originally diagnosed Graves' on 9 June thought my thyroid was a bit enlarged.When I returned to Texas the endo I saw didn't even feel of my thyroid!! Isn't that quite unusual? He is the only physician who has never felt the thyroid. Actually, I don't think he even touched me, other than to listen to my heart & lungs.I've just returned to vegetarian eating because several years ago when I was a vegetarian I felt better than at any other time in my life. I don't know if any of you have changed your diet or taken supplements to help with your thyroid problems, but I would like to hear from anyone who has.In the past week I've read horror stories about drugs and/or RIA. Can someone help me find a link that has the pros & cons of all treatments? If there isn't a link, I'm ready to design a site if someone can get me the stats.Sign me TOTALLY AT A LOSS in TexasNita

[Guest guest]

Read the other one and see the differences in the way they name and describe these things! LOL!!!

Re: The more I read the more confused I become...

I read one of them and went HUH!!Janie wrote:

We're all trying to figure it all out! You know, I put some "techy" posts to articles yesterday on the site, having to do with all the forms of thyroiditis, and the small differences between them. The trouble with the articles is that......

[Guest guest]

The beginning entrance of Hashimoto's has all the appearance of Grave's, before the evolution into the hypothyroid stage. Seems like everything but "the eyes".

Re: The more I read the more confused I become...

That's something two doctors (not endos) thought I might have... hashi - because I was hypo now I'm hyper & Graves.Thx for the info on about.com. I'll check that out as well. Janie, I hope your hashi is under control. You mentioned surgery - did you have your thyroid removed?Nita

[Guest guest]

Will be praying for one doctor being right "on the mark" for you, Janie.

Re: Re: The more I read the more confused I become...

Yes I have both - what fun. I have hashi-hypo with thyroid nodules. The nausea will be resolved when they resolve the pituitary problem which will be ??????I am waiting on a referral to the Pituitary Tumor specialist at MD now - if I don'tget it from my PCP in the next couple of weeks I will make an appt with my neurologist and ask him, then I will self-refer (MD will let you and so will my insurance, but I just think I wouldget in easier & quicker with a doctor referral)Janie

[Guest guest]

I read one of them and went HUH!!

Janie

wrote:

We're all trying to figure it all out!

You know, I put some "techy" posts to articles yesterday on the site, having

to do with all the forms of thyroiditis, and the small differences between

them. The trouble with the articles is that they were very technical and

difficult to understand, when it came to all that medical jargon, but it

did give you an idea as to what those differences are----that is, if you

read only ONE of the articles. I noticed that from one opinion to the next,

the so-called experts even have trouble deciding whether Hashimoto's is

the same thyroiditis as Chronic Lymphoid Thyroiditis. One article calls

them the same (not just similar). The next article says they are two different

forms of thyroiditis, with many similarities, and going "Huh????". More

confused than ever at some points. I think that this is a field of very

vast disagreement. None of them seem to be able to get their heads together

on this. Meanwhile, many are suffering.

-----

Original Message -----

From:

Janie Skipper

To:

texas_thyroid_groups

Sent:

Thursday, July 03, 2003 11:42 AM

Subject:

Re: The more I read the more confused I become...

Hi Nita,

I don't have any information for you myself, but there is quite a discussion

going on over at about.com thyroid forums under the Graves folder on vegetarian

eating and graves and soy. You may want to pop over there and see what

they are saying it may give you some insight or "food for thought". It

starts with post #48479.1.

As for endo's feeling or not feeling your thyroid - my first endo felt

it every visit, endo #2 felt it only the first visit - then never again

- even when I told him the anthesiologist had trouble getting the tube down my throat for surgery - it took him 45 minutes. My PCP just felt it

last week and ordered a second ultrasound to compare with the first one

done in 2000. I do feel something there. So as to what is usual or not

I can't say?

Wish I could help you more, I am still trying to figure Hashi's out after

4 years <<<sigh>>>.

Janie

>

[Guest guest]

I quite all my vitamins and supplements - I was getting extremely sick to

my stomach. One of the symptoms of the pituitary tumor - is stomach problems

- I have trouble just brushing my teeth without vomiting - not fun.

Janie

wrote:

I take one overall supplement plus selenium

200 mg, plenty of B5, evening primrose oil, gingko biloba (for memory and

sharpness;not that I have a wonderful memory these days, hehe), NO iron,

as I have plenty of good red blood cells, a calciummag + D supplement, extra

C, eyebright, black cohosh, NO soy (since I'm hypo, not hyper), imipramine

for depression, and levoxyl 125 mcgs---and am working on getting the Armour

because I feel that I'm probably not converting very well. (That's the

main reason I started taking the selenium). I TRY to eat a high protein,

low carb diet, though I have all kinds of trouble there because I absolutely

crave chocolate and sweets and other carbs. And I eat 5 small meals a day,

instead of 3 whopping ones. That seems to work better for me, though I'm

starting to form a bit of spare tire in the middle that I never had before

a year ago. I'm 51 now, and had a hysterectomy in my mid 30's. As for

the links, there are thousands of them out there, it's just that almost

none of them agree on anything!

-----

Original Message -----

From:

Nita Rice, Founder

FibrosingMediastinitis.com

To:

texas_thyroid_groups

Sent:

Thursday, July 03, 2003 11:52 AM

Subject:

The more I read the more confused I become...

Prior to my diagnosis of Graves' I saw a cardiologist to R/O

cardiovascular diasease (due to the palpitations, chest/neck/head

pressure, etc.). Following an exam (during which he felt my thyroid),

he recommended that I follow with an endo as he thought everything

was thyroid related. I mentioned to him that I was HypoT 3 yrs. ago

& was on a very low dose of Synthroid (I don't remember dosage, but

it was the lowest they make) for about 6 mos.

The endo who originally diagnosed Graves' on 9 June thought my

thyroid was a bit enlarged.

When I returned to Texas the endo I saw didn't even feel of my

thyroid!! Isn't that quite unusual? He is the only physician who has

never felt the thyroid. Actually, I don't think he even touched me,

other than to listen to my heart & lungs.

I've just returned to vegetarian eating because several years ago

when I was a vegetarian I felt better than at any other time in my

life. I don't know if any of you have changed your diet or taken

supplements to help with your thyroid problems, but I would like to

hear from anyone who has.

In the past week I've read horror stories about drugs and/or RIA. Can

someone help me find a link that has the pros & cons of all

treatments? If there isn't a link, I'm ready to design a site if

someone can get me the stats.

Sign me TOTALLY AT A LOSS in Texas

Nita

[Guest guest]

That's something two doctors (not endos) thought I might have...

hashi - because I was hypo now I'm hyper & Graves.

Thx for the info on about.com. I'll check that out as well. Janie, I

hope your hashi is under control. You mentioned surgery - did you

have your thyroid removed?

Nita

>

> Hi Nita,

>

> I don't have any information for you myself, but there is quite a

discussion going on over at about.com thyroid forums under the Graves

folder on vegetarian eating and graves and soy. You may want to pop

over there and see what they are saying it may give you some insight

or " food for thought " . It starts with post #48479.1.

>

> As for endo's feeling or not feeling your thyroid - my first endo

felt it every visit, endo #2 felt it only the first visit - then

never again - even when I told him the anthesiologist had trouble

getting the tube down my throat for surgery - it took him 45 minutes.

My PCP just felt it last week and ordered a second ultrasound to

compare with the first one done in 2000. I do feel something there.

So as to what is usual or not I can't say?

>

> Wish I could help you more, I am still trying to figure Hashi's out

after 4 years <<<sigh>>>.

>

> Janie

> >

[Guest guest]

That's something two doctors (not endos) thought I might have...

hashi - because I was hypo now I'm hyper & Graves.

Thx for the info on about.com. I'll check that out as well. Janie, I

hope your hashi is under control. You mentioned surgery - did you

have your thyroid removed?

Nita

>

> Hi Nita,

>

> I don't have any information for you myself, but there is quite a

discussion going on over at about.com thyroid forums under the Graves

folder on vegetarian eating and graves and soy. You may want to pop

over there and see what they are saying it may give you some insight

or " food for thought " . It starts with post #48479.1.

>

> As for endo's feeling or not feeling your thyroid - my first endo

felt it every visit, endo #2 felt it only the first visit - then

never again - even when I told him the anthesiologist had trouble

getting the tube down my throat for surgery - it took him 45 minutes.

My PCP just felt it last week and ordered a second ultrasound to

compare with the first one done in 2000. I do feel something there.

So as to what is usual or not I can't say?

>

> Wish I could help you more, I am still trying to figure Hashi's out

after 4 years <<<sigh>>>.

>

> Janie

> >

[Guest guest]

The surgery was to have my tubes tied. The thyroid & pituitary problems

have caused

fertility problems - so I haven't been on bc for years, but my fear has

always been that

everything would finally get under control and problems solved and one

day I would

wake up and find myself 48 and pregnant so I had my tubes tied 2 years

ago when I was

41. As a baby at this time in my life is the last thing I want. I have

one daughter now just

entering high school. While trying for #2 is how I found out about the

pituitary tumor 12 years

ago and they told me then I had high normal thyroid levels (TSH was over

5) - so the thyroid problem was beginning

then.

I did try hormone therapy to get pg, but once they started talking about

IVF I decided 1 child

was enough.

I still have my thyroid for now. But I do have nodules with one but

over 1 cm. last scan, just had the

repeat scan yesterday, should have those results next week.

So you tested positive for the Graves antibodies? I wonder if a person

can test positive for both?

And no my hashi's is not under control at this time or if it is, then

something else is up.......

Janie

[Guest guest]

I'm 51 as well, but every birthday should be celebrated with joy as

it marks another year you've survived!

It's good to see everyone is still trying to figure this out. It's

ironic but it's the same with the rare disease I have. I'm fortunate

to have found a knowledgeable physician who has seen 50 pts. during

the past 15 yrs. (the length of time I've had the disease). Most docs

will never even see my disease in their entire medical careers. When

I started the site & people started contacting me, the things they

had been told was amazing. Everyone hears something different &

they're all looking for a good doc.

The confusion about a rare disease without a cure or successful

treatment is one thing, but to see so much confusion in the medical

community regarding thyroid disease that probably millions of people

worldwide have, just boggles my mind!!! I don't know how many people

have been diagnosed HyperT/Graves vs Hypo, but I know it's enough

that the medical community to have come to some agreement on. We

should know all the pros & cons of every treatment option.

N

> I take one overall supplement plus selenium 200 mg, plenty of B5,

evening primrose oil, gingko biloba (for memory and sharpness;not

that I have a wonderful memory these days, hehe), NO iron, as I have

plenty of good red blood cells, a calciummag + D supplement, extra C,

eyebright, black cohosh, NO soy (since I'm hypo, not hyper),

imipramine for depression, and levoxyl 125 mcgs---and am working on

getting the Armour because I feel that I'm probably not converting

very well. (That's the main reason I started taking the selenium).

I TRY to eat a high protein, low carb diet, though I have all kinds

of trouble there because I absolutely crave chocolate and sweets and

other carbs. And I eat 5 small meals a day, instead of 3 whopping

ones. That seems to work better for me, though I'm starting to form

a bit of spare tire in the middle that I never had before a year

ago. I'm 51 now, and had a hysterectomy in my mid 30's. As for the

links, there are thousands of them out there, it's just that almost

none of them agree on anything!

>

>

>

>

>

> The more I read the more confused

I become...

>

>

> Prior to my diagnosis of Graves' I saw a cardiologist to R/O

> cardiovascular diasease (due to the palpitations, chest/neck/head

> pressure, etc.). Following an exam (during which he felt my

thyroid),

> he recommended that I follow with an endo as he thought

everything

> was thyroid related. I mentioned to him that I was HypoT 3 yrs.

ago

> & was on a very low dose of Synthroid (I don't remember dosage,

but

> it was the lowest they make) for about 6 mos.

>

> The endo who originally diagnosed Graves' on 9 June thought my

> thyroid was a bit enlarged.

>

> When I returned to Texas the endo I saw didn't even feel of my

> thyroid!! Isn't that quite unusual? He is the only physician who

has

> never felt the thyroid. Actually, I don't think he even touched

me,

> other than to listen to my heart & lungs.

>

> I've just returned to vegetarian eating because several years ago

> when I was a vegetarian I felt better than at any other time in

my

> life. I don't know if any of you have changed your diet or taken

> supplements to help with your thyroid problems, but I would like

to

> hear from anyone who has.

>

> In the past week I've read horror stories about drugs and/or RIA.

Can

> someone help me find a link that has the pros & cons of all

> treatments? If there isn't a link, I'm ready to design a site

if

> someone can get me the stats.

>

> Sign me TOTALLY AT A LOSS in Texas

>

> Nita

[Guest guest]

Janie, I'm clueless about the diseases covered by an endo. You have a

pituitary tumor & are on the thyroid group, so I assume you have a

thyroid problem as well?

I don't think there's anything worse than chronic nausea/vomiting.

How does your doc intend to resolve the problem?

N

>

> > I take one overall supplement plus selenium 200 mg, plenty of B5,

> > evening primrose oil, gingko biloba (for memory and sharpness;not

that

> > I have a wonderful memory these days, hehe), NO iron, as I have

plenty

> > of good red blood cells, a calciummag + D supplement, extra C,

> > eyebright, black cohosh, NO soy (since I'm hypo, not hyper),

> > imipramine for depression, and levoxyl 125 mcgs---and am working

on

> > getting the Armour because I feel that I'm probably not

converting

> > very well. (That's the main reason I started taking the

selenium). I

> > TRY to eat a high protein, low carb diet, though I have all kinds

of

> > trouble there because I absolutely crave chocolate and sweets and

> > other carbs. And I eat 5 small meals a day, instead of 3

whopping

> > ones. That seems to work better for me, though I'm starting to

form a

> > bit of spare tire in the middle that I never had before a year

ago.

> > I'm 51 now, and had a hysterectomy in my mid 30's. As for the

links,

> > there are thousands of them out there, it's just that almost none

of

> > them agree on anything!

> >

> >

> >

> >

> >

> >

> > The more I read the more

confused

> > I become...

> >

> > Prior to my diagnosis of Graves' I saw a cardiologist to R/O

> > cardiovascular diasease (due to the palpitations,

chest/neck/head

> > pressure, etc.). Following an exam (during which he felt my

thyroid),

> > he recommended that I follow with an endo as he thought

everything

> > was thyroid related. I mentioned to him that I was HypoT 3

yrs. ago

> > & was on a very low dose of Synthroid (I don't remember

dosage, but

> > it was the lowest they make) for about 6 mos.

> >

> > The endo who originally diagnosed Graves' on 9 June thought my

> > thyroid was a bit enlarged.

> >

> > When I returned to Texas the endo I saw didn't even feel of my

> > thyroid!! Isn't that quite unusual? He is the only physician

who has

> > never felt the thyroid. Actually, I don't think he even

touched me,

> > other than to listen to my heart & lungs.

> >

> > I've just returned to vegetarian eating because several years

ago

> > when I was a vegetarian I felt better than at any other time

in my

> > life. I don't know if any of you have changed your diet or

taken

> > supplements to help with your thyroid problems, but I would

like to

> > hear from anyone who has.

> >

> > In the past week I've read horror stories about drugs and/or

RIA. Can

> > someone help me find a link that has the pros & cons of all

> > treatments? If there isn't a link, I'm ready to design a

site if

> > someone can get me the stats.

> >

> > Sign me TOTALLY AT A LOSS in Texas

> >

> > Nita

> >

> >

> >

[Guest guest]

Yes I have both - what fun. I have hashi-hypo with thyroid nodules. The

nausea will be resolved

when they resolve the pituitary problem which will be ??????

I am waiting on a referral to the Pituitary Tumor specialist at MD

now - if I don't

get it from my PCP in the next couple of weeks I will make an appt with my

neurologist and ask

him, then I will self-refer (MD will let you and so will my insurance,

but I just think I would

get in easier & quicker with a doctor referral)

Janie

Nita Rice, Founder FibrosingMediastinitis.com wrote:

Janie,

I'm clueless about the diseases covered by an endo. You have a

pituitary tumor & are on the thyroid group, so I assume you have a

thyroid problem as well?

I don't think there's anything worse than chronic nausea/vomiting.

How does your doc intend to resolve the problem?

N

>

> > I take one overall supplement plus selenium 200 mg, plenty of

B5,

> > evening primrose oil, gingko biloba (for memory and sharpness;not

that

> > I have a wonderful memory these days, hehe), NO iron, as I have

plenty

> > of good red blood cells, a calciummag + D supplement, extra C,

> > eyebright, black cohosh, NO soy (since I'm hypo, not hyper),

> > imipramine for depression, and levoxyl 125 mcgs---and am working

on

> > getting the Armour because I feel that I'm probably not

converting

> > very well. (That's the main reason I started taking the

selenium). I

> > TRY to eat a high protein, low carb diet, though I have all kinds

of

> > trouble there because I absolutely crave chocolate and sweets

and

> > other carbs. And I eat 5 small meals a day, instead of 3

whopping

> > ones. That seems to work better for me, though I'm starting to

form a

> > bit of spare tire in the middle that I never had before a year

ago.

> > I'm 51 now, and had a hysterectomy in my mid 30's. As for the

links,

> > there are thousands of them out there, it's just that almost none

of

> > them agree on anything!

> >

> >

> >

> >

> >

> >

> > The more I read the more

confused

> > I become...

> >

> > Prior to my diagnosis of Graves' I saw a cardiologist to R/O

> > cardiovascular diasease (due to the palpitations,

chest/neck/head

> > pressure, etc.). Following an exam (during which he felt my

thyroid),

> > he recommended that I follow with an endo as he thought

everything

> > was thyroid related. I mentioned to him that I was HypoT

3

yrs. ago

> > & was on a very low dose of Synthroid (I don't remember

dosage, but

> > it was the lowest they make) for about 6 mos.

> >

> > The endo who originally diagnosed Graves' on 9 June thought

my

> > thyroid was a bit enlarged.

> >

> > When I returned to Texas the endo I saw didn't even feel of

my

> > thyroid!! Isn't that quite unusual? He is the only physician

who has

> > never felt the thyroid. Actually, I don't think he even

touched me,

> > other than to listen to my heart & lungs.

> >

> > I've just returned to vegetarian eating because several years

ago

> > when I was a vegetarian I felt better than at any other time

in my

> > life. I don't know if any of you have changed your diet or

taken

> > supplements to help with your thyroid problems, but I would

like to

> > hear from anyone who has.

> >

> > In the past week I've read horror stories about drugs and/or

RIA. Can

> > someone help me find a link that has the pros & cons of

all

> > treatments? If there isn't a link, I'm ready to design a

site if

> > someone can get me the stats.

> >

> > Sign me TOTALLY AT A LOSS in Texas

> >

> > Nita

> >

> >

> >