A question

[Guest guest]

Hi ,

Many red dyes are loaded with iodine and they're one of the things we need to

watch out for. Take care, Elaine

[Guest guest]

,

The first thing that comes to mind is that maybe there was artificial

coloring in the filling (like red #3) that set you off. But I could be

totally wrong. Glad you got labs done -- that should clarify things at

least to some extent.

Hope you feel better soon,

At 07:40 PM 10/1/2003, you wrote:

>Hi all,

>I've been gone for a while.

>Well, this weekend, I experienced an episode.

>I was at a conference.

>I had a piece of cake.

>The filling was some kind of rasberry.

>But it was some kind of jelly like filling.

[Guest guest]

BINGO !

Mellisa,

That is exactly what happens to me if I have hidden MSG snuck in my food.

Don't panic. The first time IS scary, I know.

But since I continue to try to avoid the stuff, it has never set off Graves'

again.

I react to both MSG and iodine, but the iodine 'hit' is not as dramatic.

When it is some mysterious form of MSG, depending on the form and the amount

it can strike as soon a a few minutes after starting to eat, or as long as

an hour. But it creates sever heart palps and many hyper symptoms. Most

often I sweat terribly the whole night too.

Which is a blessing in disquise, as my partner not only can feel the

heart baet, but then has a very hot sweaty woman next to him that night. He

did NOT believe me in the beginning that any kind of food could REALLY

affect anything more than my MIND. Yep... he originally truely believed this

was all in my mind. So I guess if it is going to happen, at least we have

outward signs that we are not a tad bit nuts. :-)

After being scared once again, and kept awake, the following three days I

always feel very hypo... hung over ...achy...and thinking is slow. If it was

an event that also came with a headache, this may clear by the morning of

the fourth day, or has held on a bit longer, though the other hypo sickness

feelings are gone.

Hope you didn't get all puffy and have your eye lids show it too. This

just makes me look as bad as I feel.

I believe we have had this same thing happen many other times while we

were on the ATDs, but the medication protected us from the severity of the

feelings, and at that time we had a 'bad day'... or what ever we happened to

call it on each occasion.

Wonder how many early labs I did do because of this, and then had those

lab numbers make me look the fool ?

Keep in mind, this IS a blessing. WE are able to be very aware of how

things like this affect our body. Others not as sensitive go on about their

normal lives, ingesting poisons and not paying attention. I had to really

focus on this thought a lot , not long ago. I had a 'attack' on a Friday

night and had plans for a wonderful weekend. :-(

As I sweated out that first night, I wanted to cry for the unfairness of

the whole thing. BUT... by the time I worked through it, I have once again

seen the bright side. WE will not be frail old ladies that have a zillion

things wrong with them because they ate crap their whole lives.

And yes... I once believed anyone that said they reaceted to some foods in

dramatic ways were some sort of 'Nuts' too.

-Pam L-

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Pam L,

Yes, that is exactly what I felt like.

Include the nausia and anxiety with the symptomes that you described.

And you have my friday night.

I experienced every emotion that it was.

Now I just feel like a roller coaster.

I had labs done before the food reaction.

Should I have them done again now that htis has happened?

R. Green

A friend is someone who knows the song in your heart and can sing it back

to you when you have forgotten the words.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Hi ,

One more thought, with your description of the filling as being thick, I

wonder if they used agar-agar, a seaweed derivative, to gel the filling.

It's an alternative to gelatin, and sometimes it's used because some people

object to the animal product. As you know, seaweed has a high level of

iodine. I've never seen stats on agar, but who knows?

Terry

> From: graduate56@...

> Reply-To: graves_support

> Date: Wed, 1 Oct 2003 17:40:36 -0600

> To: graves_support

> Subject: a question

>

> Hi all,

> I've been gone for a while.

> Well, this weekend, I experienced an episode.

> I was at a conference.

> I had a piece of cake.

> The filling was some kind of rasberry.

> But it was some kind of jelly like filling.

> But thicker.

> The flavoring was strong.

> A few hours later, I was extremely hyper.

> Actually, its like a thyroid roller coaster.

> I have been extremely tired eversince this weekend.

> Could this be happening?, or was I slightly hypo and this made it worse?

> Could it have been the rasberry filling in the cake?

> Was the rasberry artificial?

> I had labs taken but don't have the copies yet.

> I'm not on any drugs right now.

> Have not taken MMI since june.

> I'm also experiencing some equilibrium problems as well.

> Any suggestions would be appreciated.

> R. Green

> A friend is someone who knows the song in your heart and can sing it back

> to you when you have forgotten the words.

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

>

>

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

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

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

> --------

>

>

[Guest guest]

Hi ,

From what Pam L. is saying, it sounds like we will live with this sensitivity

from here on, so I'm not sure if you must do labs again or could just wait to

see how you feel over the next few weeks. On the other hand, if it's convenient

to get them done, why not check your levels just for peace of mind.?

Best wishes

Re: a question

Pam L,

Yes, that is exactly what I felt like.

Include the nausia and anxiety with the symptomes that you described.

And you have my friday night.

I experienced every emotion that it was.

Now I just feel like a roller coaster.

I had labs done before the food reaction.

Should I have them done again now that htis has happened?

The Graves' list is intended for informational purposes only and is not intended

to replace expert medical care.

Please consult your doctor before changing or trying new treatments.

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

DISCLAIMER

Advertisments placed on this yahoo groups list do not have the endorsement of

the listowner. I have no input as to what ads are attached to emails.

--------------------------------------------------------------------------------\

------

[Guest guest]

>>>A friend is someone who knows the song in your heart and can sing it back

to you when you have forgotten the words.

Oh this is so beautiful...thank you for allowing me to read it! : )

Re: a question

,

The first thing that comes to mind is that maybe there was artificial

coloring in the filling (like red #3) that set you off. But I could be

totally wrong. Glad you got labs done -- that should clarify things at

least to some extent.

Hope you feel better soon,

[Guest guest]

,

I wonder what your FT3 and FT4 would look like. Also, the " normal " TSH may

not be normal for you. It would have helped to have more data. Perhaps she

can tell you what exactly the TSH was, which might indicate if you are

leaning hyper or hypO.

At 08:29 PM 10/14/2003, you wrote:

>Hi all,

>Well, lately, I have been experiencing queasiness, and slight dizziness.

>As well as I'm very tired.

[Guest guest]

> From: graduate56@...

> Reply-To: graves_support

> Date: Tue, 14 Oct 2003 18:29:43 -0600

> To: graves_support

> Subject: a question

>

> Hi all,

> Well, lately, I have been experiencing queasiness, and slight dizziness.

> As well as I'm very tired.

You're probably hypO!

>

> I am also not sleeping all through the night either.

> My stomach fluctuates from normal, to being off the track, to just not at

> all.

> could these symptoms be graves related?

> I have had labs done, but the results were perfect acording to my indo.

> She only runs a TSH now that I'm no longer on meds.

> Should something else be done?

These doctors! They OUGHT to know better!!! TSH is not a good indicator of

your state. You should have FT4 and FT3! TSH could be repressed still and

also lags behind.

>

> I wrote two weeks ago concerning the reaction I had to a cake filling.

> Surely, that isn't still happening, and effecting me?

> I'm seeing my regular doctor next week.

> To discuss my periods or lack of.

Many people with GD have polycystic ovarian syndrome. If you're not having

periods you should be tested.

> She keeps trying to push anti-depressants on me.

Depression (as Elaine just mentioned in another post) is often the FIRST

indicator or hypOthyroidism. Antidepressants just mask the symptoms and

cause other problems.

> Just want to go in there prepared whith data.

>

> And able to discuss other things with her as well.

> Like the mentioned symptoms.

>

> Or is it just in my head, like they have been telling me?

> Any suggestions would be very very helpful.

> R. Green

> A friend is someone who knows the song in your heart and can sing it back

> to you when you have forgotten the words.

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

>

>

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

> The Graves' list is intended for informational purposes only and is not

> intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement of

> the listowner. I have no input as to what ads are attached to emails.

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

> --------

>

>

[Guest guest]

Hi ,

Sounds pretty normal to me at this point.

Before I hit remission, I was lucky enough to have watched others go through

this same thing, and our Val had taken the time to ask questions here, when

it happened to her, so I even had her blow by blow account to help me

understand and not panic.

Since then it stands out to me, when others post on other boards / forums

etc.

Seems MANY of us , in the first six months to oh.... say a year and a half..

after the final anti thyroid pill, go up and down . And time in hypo land

seems pretty common. Most wait it out, and their T4 and T3 do end up normal.

Graves' and remission is way to serious to accept them being so cheap as to

run only the TSH. The FT4 will tell you more, and it is less expensive that

the TSH. But with insurance, I would insist on all three. They are all

important for where you are at now.

The 'cake filling incident' should have been over and done by the fourth day

at the very latest. As you move along, there will probably be other slip ups

with reactions that will vary in intensity. Just learn as you go, and know

that most normal people have never felt such a thing, and they are going to

doubt you. Whatever ... it is our body and our choice as to what to eat and

how we feel.

Now... as for how you end up dealing with these ups and downs. That is

different for all of us. My personal choice was to find a new doctor that

would listen to me. My labs were hypo for ME, but within the normal range. I

wanted to add Synthroid, in order to come back up out of hypo and have

control.

This is a hard thing to find a doctor to do, but it can be done. I seem to

have many factors at work here, and the hypo only made everything so much

worse for ME. I laid out four years of lab results on that exam table they

have, and had my notes on symptoms with each lab slip.

I was able to present a convincing case, and did get my scrip for Synthroid.

One thing I said that seemed to help me that day was: I do NOT want to be

hyper ! Been there, done that, never want to do it again ! If I take the

Synthroid and feel hyper, I will just not take any more . I will get labs in

six weeks if I make it that far, and am still taking the medication. Then we

can discuss the results, and how I feel. WE will see how my symptoms react

to this additional thyroid hormone.

All I want is a band aid right now, because I am miserable and this is the

most likely cause.

What I did not try to explain is the fact that by allowing my thyroid a

break and having it not work as hard, I am hoping this suppresses any

possible antibody increases. This is only MY theory has worked so far for me

I have never heard of anyone doing it exactly this way, but if you study

the original BRT protocol, they always keep the patient on thyroid hormone

AFTER they remove the ATD.

You are no where near this possible approach, but I want to throw it out

there, to help explain my own personal logic, and what I believe is one way

to focus on one thing at a time. YOU may have your slight hypo phase pass in

a short time. I gave up at three months after the last PTU. Again, it is

very likely most will not have the severity of symptoms I felt, as they do

not have anything else wrong with them.

Here is where I was going with all of this....

AFTER I got my thyroid levels perfect, and steady... THEN I proceeded on to

each separate problem I had. Most of which were all part of the great puzzle

of what caused Graves' in the first place. I do not believe it is ever only

one thing.

THEN I did start on an anti depressant. But not until I had complete control

of my thyroid levels. Because I felt the AD would prevent my feeling all

that I needed to feel, in order to be positive my thyroid was perfect. Being

too hypo is cause for many other problems in the long run. Various cancers

are at the top of that list, as well as cholesterol being too high, and

heart and bone problems.

I am planning on a long life, and as long as I have done this much work to

get my thyroid settled, it would seem silly to accept any thing less than

optimal levels.

The story goes on, but this is enough to get you thinking I hope.

Hang in there. Get proper labs, and give it some time right now.

Yes... every single thing you mentioned has been hypo in my experience.

-Pam L-

3 1/2 years Graves', TED, and PTU.

Remission since Jan. 28th. 2002 !

Key: SLOW reduction of PTU (despite an incompetent endo ! ), eight hour

dosing, improved lifestyle, REAL food/ no processed pre-made food, herbs,

and looking at the big picture.

Triggers are: MSG/any 'flavorings', glutamates ,aspartame, pesticides,high

iodine foods.

_____________________________________________________

Pills alone only help the symptoms. We must help our bodies to heal.

_____________________________________________________

* " What a long, strange, trip it's been " ...Jerry .... Peace*

[Guest guest]

We're taking Alyssa tonight to see Dr. Harbison for her appt

tomorrow. Now, there's 2 things...

1. I can NOT get this freakin' spreadsheet to work! I'm doing what

it says to do. The only thing I can figure is that I am running

Excel XP and the spreadsheet is in an older version, maybe?

2. Where are some good places for the family to eat around the

hospital. Her appt is at 9:30 (I've heard that we can expect not to

actually SEE her until around 11ish) At which time, it will be time

for lunch.

If there's any other info that anyone can think of, please email me

at:

emily_joyner@...

Thank you for everything!

~

PS

Alyssa is now walking, she says: no, more, mine, mama, night night,

bye bye and dada. :-) She's also feeding herself and others with

spoons and forks and is now trying to drink from a regular cup! :-)

Not a sippy cup for our big girl, nuh uh, no way! *laugh!*

[Guest guest]

,

I don't have any advice about the trip to NYC. The spread sheet

worked on my computer so maybe it does have to do with the older

version.

BUT - I had to comment on your no sippy cup comment. Last year at

convention the ladies from Easter Seals gave a presentation on

feeding issues with our kids. The speech therapist/feeding

specialist HATES sippy cups. She would prefer kids go to just a

regular cup. Regular cups require an active will to get the liquid,

sippy cups are passive.

I have Matt scheduled for a feeding clinic with them next week, so

I'll let you all know how it goes!

Beth H.

-- In RSS-Support , " emily_joyner "

wrote:

> We're taking Alyssa tonight to see Dr. Harbison for her appt

> tomorrow. Now, there's 2 things...

>

> 1. I can NOT get this freakin' spreadsheet to work! I'm doing

what

> it says to do. The only thing I can figure is that I am running

> Excel XP and the spreadsheet is in an older version, maybe?

>

> 2. Where are some good places for the family to eat around the

> hospital. Her appt is at 9:30 (I've heard that we can expect not

to

> actually SEE her until around 11ish) At which time, it will be

time

> for lunch.

>

> If there's any other info that anyone can think of, please email

me

> at:

>

> emily_joyner@u...

>

> Thank you for everything!

> ~

>

> PS

> Alyssa is now walking, she says: no, more, mine, mama, night

night,

> bye bye and dada. :-) She's also feeding herself and others with

> spoons and forks and is now trying to drink from a regular cup! :-

)

> Not a sippy cup for our big girl, nuh uh, no way! *laugh!*

[Guest guest]

,

Don't be suprised if you don't get in to see Dr. H until after 12.

It has happened to us, and we usually have a 9 or 9:30am appt.

Also, there is a small coffee shop downstairs by the main entrance.

They have juice, coffee, bagel, etc. that are very reasonable for

NY. We are originally NY'ers and miss the pizza and there are great

pizzerias within walking distance of the hospital. Down here in

Virginia they just don't know how to make pizza, so it is always a

big treat for my husband and I to get pizza for lunch when Jake has

a Dr. H appt!

Anyway, good luck with your appt.

Alison

> We're taking Alyssa tonight to see Dr. Harbison for her appt

> tomorrow. Now, there's 2 things...

>

> 1. I can NOT get this freakin' spreadsheet to work! I'm doing

what

> it says to do. The only thing I can figure is that I am running

> Excel XP and the spreadsheet is in an older version, maybe?

>

> 2. Where are some good places for the family to eat around the

> hospital. Her appt is at 9:30 (I've heard that we can expect not

to

> actually SEE her until around 11ish) At which time, it will be

time

> for lunch.

>

> If there's any other info that anyone can think of, please email

me

> at:

>

> emily_joyner@u...

>

> Thank you for everything!

> ~

>

> PS

> Alyssa is now walking, she says: no, more, mine, mama, night

night,

> bye bye and dada. :-) She's also feeding herself and others with

> spoons and forks and is now trying to drink from a regular cup! :-

)

> Not a sippy cup for our big girl, nuh uh, no way! *laugh!*

[Guest guest]

Hi I just have a question...my little girl is turning 5 in June and it seems her

speech is becoming well lets just say she is starting to studder more so than

ever before. Has anyone else ever had this happen?

mother to Niki complex 1

[Guest guest]

My nephew (not mito) has had speech problems his whole life due to cleft palate. He did not start to studder until he was about 5 or so. We have related it to stress/self esteem issues. He does not have a split lip, but does have signifigant speech issues so he has to deal with the other kids remarks.

If her studdering is severe enough you are willing to spend about 5 grand on, there is a device wich helps stop it. I'm not sure of it's name, but can get it for you if you want. The device is worn in the ear like a hearing aid and somehow does something to help the studdering. Obviously I don't know too much about it but I do know my nephew has one and it works quite well. I have also heard that there is no insurance that will cover it because it is not considered medically necessary.

Best wishes

Try the new Beta version of MSN Messenger - it's FREE!

[Guest guest]

Dear DeeDee,

My son Craig had perfect speech up until about 5 years old when it slowed down. It is much more difficult for him to get words out now. His is not studdering really. I think his has to do with his ataxia affecting his speech now too. It also has to do with having trouble accessing the word he wants quickly enough.

Donna

Re: A Question

Hi I just have a question...my little girl is turning 5 in June and it seems her speech is becoming well lets just say she is starting to studder more so than ever before. Has anyone else ever had this happen? mother to Niki complex 1Please contact mito-owner with any problems or questions.