Re: Newly diagnosed and trying to learn

[Guest guest]

Hi ,

Yes, like most autoimmune diseases, Graves' disease has symptoms that wax

and wane, especially in response to stress since it's one of the

environmental triggers of autoimmune thyroid disease. So is iodine. You want

to avoid amounts greater than 150 mcg/daily, keeping in mind that the average

fast food diet has about 1,000 mcg.

Keep learning all that you can so you can stay in charge of your treatment

plan. Besides your anti-thyroid drug, there are several things you can do to

help your condition, mostly dietary changes, correcting nutrient

deficiencies, practicing stress reduction techniques, and avoiding any known

allergies. Take care, Elaine

See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

Welcome :-) I would definitely stick with the meds if they work for you.

I was on them for a year and a half and haven't been back on in almost 4

years. I find that stress triggers my symptoms so I try to take things

easy when I can :-) there is a ton of info here, and lots of

knowledgeable people.

Good luck!

Amy

[Guest guest]

Welcome :-) I would definitely stick with the meds if they work for you.

I was on them for a year and a half and haven't been back on in almost 4

years. I find that stress triggers my symptoms so I try to take things

easy when I can :-) there is a ton of info here, and lots of

knowledgeable people.

Good luck!

Amy

[Guest guest]

Hi , Welcome!

> 1. I went back to the office last week, feeling fine, until one

> particularly long and stressful day. Half the symptoms seemed to come

> back, the gritty eyes, dry mouth, heat intolerance and weakness in the

> thighs. After a good night's sleep they had all disappeared again. So

> are there good days and bad days?

Yes, there are good days and bad days, and stress can also be a

trigger for symptoms. With Graves you may want to work on reducing

stress in your lifestyle as much as you can..in the long run it can

mean more good days, or even remisssion.

> 2. I did not have any symptoms of GO when Graves was diagnosed three

> weeks ago but in the past few days my eyes have become puffed and

> appear to be a little more prominent than before? Can the GO appear and

> continue when the other symptoms have gone?

There are more people here with GO, I'm sure they will chime in anytime.

> 3. Iodine, yes or no? I take chorella as a part of a daily multi

> vitamin routine. Should I remove all iodine sources from my diet?

Diet is also important with Graves. You should not take any extra

iodine anymore, and you may want to do research in the meantime about

other supplements. . There are some of us here who have more of a

problem with diet (myself included) and what I eat and what

supplements I take is something I watch and research and pay close

attention to.

Again, Glad you're here. GOod Luck

Val

[Guest guest]

Hi , Welcome!

> 1. I went back to the office last week, feeling fine, until one

> particularly long and stressful day. Half the symptoms seemed to come

> back, the gritty eyes, dry mouth, heat intolerance and weakness in the

> thighs. After a good night's sleep they had all disappeared again. So

> are there good days and bad days?

Yes, there are good days and bad days, and stress can also be a

trigger for symptoms. With Graves you may want to work on reducing

stress in your lifestyle as much as you can..in the long run it can

mean more good days, or even remisssion.

> 2. I did not have any symptoms of GO when Graves was diagnosed three

> weeks ago but in the past few days my eyes have become puffed and

> appear to be a little more prominent than before? Can the GO appear and

> continue when the other symptoms have gone?

There are more people here with GO, I'm sure they will chime in anytime.

> 3. Iodine, yes or no? I take chorella as a part of a daily multi

> vitamin routine. Should I remove all iodine sources from my diet?

Diet is also important with Graves. You should not take any extra

iodine anymore, and you may want to do research in the meantime about

other supplements. . There are some of us here who have more of a

problem with diet (myself included) and what I eat and what

supplements I take is something I watch and research and pay close

attention to.

Again, Glad you're here. GOod Luck

Val

[Guest guest]

Hi ,

Welcome to the group. I will try to give you some answers to your

questions and others in the group will help out too. It is very very

important that you learn as much as you can and be proactive in your

treatment, and have a doctor that will work WITH you.

>>>1. I went back to the office last week, feeling fine, until one

particularly long and stressful day. Half the symptoms seemed to come

back, the gritty eyes, dry mouth, heat intolerance and weakness in the

thighs. After a good night's sleep they had all disappeared again. So

are there good days and bad days?<<<

It is interesting that you brought up the stressful day. Stress is

very very hard on us and it is essential that you remove as much

stress from your life as possible. I know, easier said than done, but

living with Graves does mean some lifestyle changes, especially to

attain remission and stay there. In the archives do a search for

relaxation and stress separately, you will find many many posts on

these topics. And yes, there are good days and bad days, but I have

found my bad days to usually follow stress.

>>>2. I did not have any symptoms of GO when Graves was diagnosed

three weeks ago but in the past few days my eyes have become puffed

and appear to be a little more prominent than before? Can the GO

appear and continue when the other symptoms have gone?<<<

The gritty eyes you spoke of as symptoms is a symptoms of your eye

disease. I would suggest you find an ophthamologist who is very

familiar with treating GO and get a baseline for where you are now.

BTW, if you have RAI your eye symptoms will probably become much more

severe. I had RAI in '96 and since April of 01 I have been dealing

with the eye disease, it is worse than anything else with graves in my

opinion.

>>>3. Iodine, yes or no? I take chorella as a part of a daily multi

vitamin routine. Should I remove all iodine sources from my diet?<<<

Yes, reduce as much iodine as you possibly can while you are being

treated for hyper. The thyroid will uptake the iodine and continue to

work overtime in producing hormone and not giving your ATD's the

chance to work properly.

Remember, Graves is an autoimmune disease, one that attacks the

thyroid (the same antibodies that attack the thyroid also attack the

eyes). The thyroid is NOT sick, by doing RAI you are essentially

killing the messenger and not treating the actualy problem.

Remission usually takes 18-24 months to attain, though many in group

have used ATD's long term rather than going through RAI. Have

patience with yourself, with your treatment, keep reading, learning

and asking questions. Everyone of us here can identify with what you

are going through so you have a lot of support and don't have to deal

with this alone anymore.

Hope I have helped in some way, take care,

Jody

[Guest guest]

,

Welcome to the group. You seem to have listed just about every classic GD

symptom, clearly you are well in tune with changes in your body. This is

great. Don't let them do RAI, you'll regret it forever from what the members

of this group who went that route go through. Lots in the archives about

that. You seem to be responding really well to the anti-thyroid drug, which

I think means you will ultimately end up in remission, if you stay with it

for a good while.

I have gone the ATD's route, taking Tapazole and its generic, methimazole,

for most of 7 years with no ill-effects, and am now off everything (for a

2nd time) and doing well--coming up on a 1-month anniversary of that on the

19th.

You don't mention lab results--one piece of advice I've learned here, is to

get copies of ALL your labs and keep them. Share them here for answers to

questions you may have, as well.

You'll find that you have to become sensitive to the symptoms both of hyper

and hypO thyroid, since ATD dosage must be adjusted down as your body moves

towards euthyroid state on them--and a great " clue " as to when that is

happening, is that you start feeling sluggish and tired all the time, and

not thinking straight. Look at a copy of our groups symptom list, which may

help you, again in the archives. It also has eye symptoms listed.

Good luck, you've found a friendly group to support you through this.

Terry

>

> Reply-To: graves_support

> Date: Mon, 14 Jan 2002 14:51:38 -0000

> To: graves_support

> Subject: Newly diagnosed and trying to learn

>

> Hi,

>

> My name is .

>

> I was diagnosed with Graves three weeks ago and am trying to learn as

> much as I can. I had the following symptoms: rapid weight loss, heat

> intolerance, tremors, dry mouth, weakness in the lower arms and thighs,

> gritty eyes, restlessness at night, itchy skin and tiredness.

> Carbimazole was prescribed and I am taking 45 grams a day. In ten days

> all the symptoms had disappeared and I felt quite normal again. This

> all happened just before Christmas and I used the vacation to get on

> the net and try to find out as much as I could. The doctor told me

> that I woudl probably have to undergo RAI. He said this quite casually

> adn did not tell me anything of the pros and cons. What I have been

> reading since then has made me realise that I need knowledge if I am to

> understand and have any say in my treatment.

>

> I am so pleased to have found a support group and I hope that someone

> will be able to answr these three (probably the first of many)

> questions.

>

> 1. I went back to the office last week, feeling fine, until one

> particularly long and stressful day. Half the symptoms seemed to come

> back, the gritty eyes, dry mouth, heat intolerance and weakness in the

> thighs. After a good night's sleep they had all disappeared again. So

> are there good days and bad days?

>

> 2. I did not have any symptoms of GO when Graves was diagnosed three

> weeks ago but in the past few days my eyes have become puffed and

> appear to be a little more prominent than before? Can the GO appear and

> continue when the other symptoms have gone?

>

> 3. Iodine, yes or no? I take chorella as a part of a daily multi

> vitamin routine. Should I remove all iodine sources from my diet?

>

> Would appreciate any responses.

>

>

>

>

>

>

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

> 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 does not have the endorsement

> of

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

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

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>

>

[Guest guest]

Welcome aboard . Where are you from? Your using Carbimazole (aka

methimazole) means you're not from the USA. Maybe wherever you are,

you're more likely to find drs. who are not rabidly pro-RAI. Most of us

have had to learn to put up with our endos, figure out what we need, and

demand it. Dr. Arem's and Elaine's books + the archives and any questions

you have will help you a lot in determining what you need.

Here's a baseline:

Early on in treatment, preferably at diagnosis but you're beyond that

, have antibody tests (I'm not exactly sure which ones). They're useful

in determining remission.

Every time you go back you should have a complete blood count to be

sure your liver and white blood count are OK.

TSH and more importantly T4. T3 is also important but it wasn't worth

the hassle to me unless I felt hypo.

A very gradual reduction in dosage is good for you. Chances are you

don't need 45 mg. now - which is on the high side. If I were you I would

be tested every 6 weeks and reduce in gradual increments. (I went at 3

month intervals and was maintained at way too high a dose and came back

hypo.)

If you're able to tolerate Methimazole don't be cajoled into RAI. It's

terrible for your eyes and if you have a large, highly vascularized

goiter (and I'll bet you do, don't you) it might likely have to be

repeated.

As far as diet goes, avoid extra iodine and stimulants. For months I was

terrified of chocolate chips (wish I still was, but without the GD!). And

take 1200 mg. calcium with at least half as much magnesium to help build

up your bones again.

Good luck!

Take care, Fay

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[Guest guest]

Welcome aboard . Where are you from? Your using Carbimazole (aka

methimazole) means you're not from the USA. Maybe wherever you are,

you're more likely to find drs. who are not rabidly pro-RAI. Most of us

have had to learn to put up with our endos, figure out what we need, and

demand it. Dr. Arem's and Elaine's books + the archives and any questions

you have will help you a lot in determining what you need.

Here's a baseline:

Early on in treatment, preferably at diagnosis but you're beyond that

, have antibody tests (I'm not exactly sure which ones). They're useful

in determining remission.

Every time you go back you should have a complete blood count to be

sure your liver and white blood count are OK.

TSH and more importantly T4. T3 is also important but it wasn't worth

the hassle to me unless I felt hypo.

A very gradual reduction in dosage is good for you. Chances are you

don't need 45 mg. now - which is on the high side. If I were you I would

be tested every 6 weeks and reduce in gradual increments. (I went at 3

month intervals and was maintained at way too high a dose and came back

hypo.)

If you're able to tolerate Methimazole don't be cajoled into RAI. It's

terrible for your eyes and if you have a large, highly vascularized

goiter (and I'll bet you do, don't you) it might likely have to be

repeated.

As far as diet goes, avoid extra iodine and stimulants. For months I was

terrified of chocolate chips (wish I still was, but without the GD!). And

take 1200 mg. calcium with at least half as much magnesium to help build

up your bones again.

Good luck!

Take care, Fay

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Welcome aboard . Where are you from? Your using Carbimazole (aka

methimazole) means you're not from the USA. Maybe wherever you are,

you're more likely to find drs. who are not rabidly pro-RAI. Most of us

have had to learn to put up with our endos, figure out what we need, and

demand it. Dr. Arem's and Elaine's books + the archives and any questions

you have will help you a lot in determining what you need.

Here's a baseline:

Early on in treatment, preferably at diagnosis but you're beyond that

, have antibody tests (I'm not exactly sure which ones). They're useful

in determining remission.

Every time you go back you should have a complete blood count to be

sure your liver and white blood count are OK.

TSH and more importantly T4. T3 is also important but it wasn't worth

the hassle to me unless I felt hypo.

A very gradual reduction in dosage is good for you. Chances are you

don't need 45 mg. now - which is on the high side. If I were you I would

be tested every 6 weeks and reduce in gradual increments. (I went at 3

month intervals and was maintained at way too high a dose and came back

hypo.)

If you're able to tolerate Methimazole don't be cajoled into RAI. It's

terrible for your eyes and if you have a large, highly vascularized

goiter (and I'll bet you do, don't you) it might likely have to be

repeated.

As far as diet goes, avoid extra iodine and stimulants. For months I was

terrified of chocolate chips (wish I still was, but without the GD!). And

take 1200 mg. calcium with at least half as much magnesium to help build

up your bones again.

Good luck!

Take care, Fay

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.