Newly diagnosed

[Guest guest]

Thanks for the welcome!! I started having major symptoms in early november. But I had been nervous, grumpy and emotional for quite a while. I had been driving and suddenly felt like I was watching a movie of myself driving and almost wrecked my car. I was dizzy, my hands shook so bad that my cigarette flung about 3 feet away from me and burned my carpet. I would get so hot .My hubby finally made me go to the doctor and he said my heart was beating too fast, had me lay down for a while to see if that helped, it didn't. He did an EKG when it wouldn't slow down. It was beating at 140pm. He told me to start the toprol right away and then he drew blood and called me the next day and said I had to have a thyroid scan, that came back with an uptake of 63%. I went to this endo last week and he said it was Grave's. I have now lost close to 12 pounds, that is the only good !

thing that has come of this. I also just feel plain awful and tired all the time. I feel achey too. I am just really scared and I don't think I want that RAI. I have read some bad things about it. Come to think of it, my eyes do feel scratchy and dry. I will get those drops that you mentioned. I am sorry if it sounds like I am rambling, I am just really happy that I have someone to talk to about this:)

Ellie

[Guest guest]

Dear E llie, I just wrote this other great long thing to you and Mona and Kate Fraser,

But being more brief about it - just want to say that you WILL feel better than you do. Hang in there. The info on this board and on iThyroid regarding the relationg between COPPER deficiency and hyperT might interest you - it all makes alot of sense to me when I look back on what went on with my lifestyle and what I ate and drank prior to being diagnosed in JULY.

I was very careful with the whole theory and because I was scared iof throwing myself out of whack even more than I already am, I wanted to read and understand every single mineral interaction before I started taking supplements, so it took me some time to get going (!) - but I am glad that I started and glad I understand at least some of it. If I was right at the beginning of all this now, I think I would ask my doctor to refer me to a nutritionist or find one privately. I have found that the endocrinologists will not give you any advice at all about what to eat to help yourself - mine wouldn't even say anything at all about iodine - I still don't quite understand if you are supposed to have it or not while you are still hyper T.

I'm rambling now... but welcome and hope it helps you out as much as it has me.

DAWN

>From: ZOSO164@...

>Reply-hyperthyroidismegroups >hyperthyroidismegroups >Subject: Re: Newly diagnosed >Date: Thu, 7 Dec 2000 15:04:34 EST > >Thanks for the welcome!! I started having major symptoms in early november. >But I had been nervous, grumpy and emotional for quite a while. I had been >driving and suddenly felt like I was watching a movie of myself driving and >almost wrecked my car. I was dizzy, my hands shook so bad that my cigarette >flung about 3 feet away from me and burned my carpet. I would get so hot .My >hubby finally made me go to the doctor and he said my heart was beating too >fast, had me lay down for a while to see if that helped, it didn't. He did an >EKG when it wouldn't slow down. It was beating at 140pm. He told me to start >the toprol right away and then he drew blood and called me the next day and >said I had to have a thyroid scan, that came back with an uptake of 63%. I >went to this endo last week and he said it was Grave's. I have now lost >close to 12 pounds, that is the only good thing that has come of this. I >also just feel plain awful and tired all the time. I feel achey too. I am >just really scared and I don't think I want that RAI. I have read some bad >things about it. Come to think of it, my eyes do feel scratchy and dry. I >will get those drops that you mentioned. I am sorry if it sounds like I am >rambling, I am just really happy that I have someone to talk to about this:) > >Ellie Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Hi Ellie......There are several good books to read: 1) Thyroid Solution by

Ridha Arem, MD and Healing Options: a report on Graves Disease treatments by

Kate Flax. Also Elaine who answers so many of our questions is in the

process of writing a book - we all anxiously await the completion.

I dropped almost 15 pounds and devoured everything in sight! It was

embarrassing, I never could get enough to eat and my digestive system did

overtime! I still remember the day that changed....suddenly I wasn't so

hungry. Some folks actually have the opposite affect. You probably have a

hard time sleeping too. It felt like I was running in place all the time!

Had to stop all exercise because I was afraid of having a heart attack,

didn't have the strength anyway. Muscles atrophied a little too, hair fell

out in clumps, equilibrium was off - used to walk into the walls at work.

Definitely stay away from the RAI. Many folks here complain about the

long-term after affects. Several docs wanted to radiate me too but I held

off after reading about side affects and worsening of TED. By the way, if

you notice your eyes are getting worse you might want to seriously consider

giving up cigarettes. Studies haven proven cigarette smoking can worsen the

eye disease.

I'm tall and thin and usually complain about the cold but when I was very

hyper I was burning up! Also, your memory and concentration may deteriorate

(sp?) for a while so don't be alarmed. I was so bad at one time that in

mid-conversation I would forget what I was talking about. The reason for

the PRESERVATIVE FREE drops is to keep the eyes lubricated and with

preservative free you can use as much as needed. You can find the drops in

drug stores, Wal-mart, target, etc.

Reducing stress is your life will help you too. I learned to say NO to

things that occupied too much of my time and spent more time taking care of

myself. Later, Mona

Re: Newly diagnosed

Thanks for the welcome!! I started having major symptoms in early november.

But I had been nervous, grumpy and emotional for quite a while. I had been

driving and suddenly felt like I was watching a movie of myself driving and

almost wrecked my car. I was dizzy, my hands shook so bad that my cigarette

flung about 3 feet away from me and burned my carpet. I would get so hot .My

hubby finally made me go to the doctor and he said my heart was beating too

fast, had me lay down for a while to see if that helped, it didn't. He did

an

EKG when it wouldn't slow down. It was beating at 140pm. He told me to start

the toprol right away and then he drew blood and called me the next day and

said I had to have a thyroid scan, that came back with an uptake of 63%. I

went to this endo last week and he said it was Grave's. I have now lost

close to 12 pounds, that is the only good ! thing that has come of this. I

also just feel plain awful and tired all the time. I feel achey too. I am

just really scared and I don't think I want that RAI. I have read some bad

things about it. Come to think of it, my eyes do feel scratchy and dry. I

will get those drops that you mentioned. I am sorry if it sounds like I am

rambling, I am just really happy that I have someone to talk to about this:)

Ellie

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89:N/A=466330/?http://www.> Click Here!

[Guest guest]

Robbi,

Welcome to the list, my name is Melody. I have had P since I was a teenager,

all three of my daughters have had P since they were little. My youngest

daughter has PA, she was diagnosed at 13, now she's 14. It can be very

overwhelming at times. We all went through a grieving like process at first,

it lasted about 6 months. At times I still get overwhelmed. Right now the

drugs are working for her, we went through a bunch of drugs before we found

the right combination. Try to keep positive, we are determined to fight the

PA, for to have as normal of a life as possible, and for the most part

she does. We have to make concessions at times, do things a little

differently. We try to take each day as it comes, and we're always hoping

that they'll find a cure. Remember that there are a lot of drugs out there,

that they're always coming up with new ones.

I think you'll find that this list will help you, there are a lot of

wonderful people on here with a lot of good advice.

Melody

[Guest guest]

hang in there hopefully the mtx will kick in soon.

i also have psoriasis on my hands and feet and its been horrible lately and

nothing is helping it.

mtx is not doing much for me but in addition i just started enbrel and has

been great for the 'pa'

well take care and feel better

ro

[Guest guest]

Hang in there Kiddo,

There's an old story (I know a lot of old stories I'm afraid)...

If everyone put all their problems into a hat and you had to choose

one, you would end up wanting your old problem back.

Hey, you could have been born in Bangladesh of something. THESE guys

have some real problems!

Just kidding of course.

Have a great holiday season.

Jeff

> Have had psoriasis for 3 years. Started on the scalp. Started

> appearing on arms and torso after hysterectomy a year and a half

> ago. Not extensive coverage. Went for a first appointment with a

> rheumatologist today. Both ring fingers have swelled up like

> sausages. Diagnosed with PA. Started on methotrexate. SIGH. Was

> told the PA can be crippling if left untreated. The Psoriasis has

> been mentally tough. Now this. I am a little overwhelmed.

[Guest guest]

Thank you all for the kind words and advice. One day at a time. I

am going back and reading the list; educating myself. Thanks.

[Guest guest]

Jen:

You may want to look for a heptologist in your area, since they

specialize on the liver.

-Clyde

=========================================================+

Help save a life, become an organ and tissue donor today.|

=========================================================+

[Guest guest]

Hi,

Anxiety and nervousness are the most common Graves' symptoms in young people. I'm wondering, though, why you say you may have to take the RAI treatment soon. You have other options.

I had RAI eleven years ago and have pretty much regretted it every day since then. Being hypo for me is being worse than being hyper. Weight gain is only a small part of it.

Learn all you can before making any decision. There are drugs you can take in the meantime, beta blockers like atenolol (tenormin) or propranolol (inderal) that will reduce your symptoms while you're deciding. And nutrition can help a great deal. see www.ithyroid.com and also my site, http://daisyelaine_co.tripod.com/gravesdisease/

Good luck, Elaine

[Guest guest]

There are several options for controlling hyperthyroidism besides taking radioactive iodine. I hope you'll give yourself some time to check out the options before deciding to destroy your thyroid gland forever. I was able to control and heal my Hyperthyroid by taking Tapazol and initially some inderol. I've been off medications and feeling fine for 10 months. I'm sure others on the board will be able to help with information and suggestions. Please be careful,. With all my best, Zoey

newly diagnosed

Hello everyone!I'm 23 and am told I am hyperthyroid. I went for the scan and uptake today. I may have to take the radioactive idodine soon. Just had a few questions. I am always hot, have heart palpitations, shaking, etc...but recently have also been experiencing mood swings. Has this happened with any of you? I feel very anxious at times. Also, did anyone experience weight gain after treatment? Would you reccommend seeking a nutritionist post-treatment? Thanks for everyone's time!:-)

[Guest guest]

> I am always hot, have heart palpitations, shaking,

> etc...but recently have also been experiencing mood swings. Has this

> happened with any of you? I feel very anxious at times. Also, did

> anyone experience weight gain after treatment?

First, welcome to the group! You'll find a lot of info and personal

advice here, so it's great that you're starting to research on your

own.

Mood swings are definitely common symptoms of hyperthyroidism. You may

find yourself easily irritable and/or frustrated. I know I definitely

experienced more extreme emotions than normal. What may have been

mildly annoying before easily pissed me off due to my thyroid problems.

On the other end, I was often easily hyper and energetic, though I

would sometimes crash soon after hitting an energy high.

Since being first diagnosed with hyperthyroidism in December '99 (when

I was 20), I've run through the symptoms twice, and both times I ended

up gaining a good amount of weight after losing some. Since your

metabolism is increased with hyperthyroidism, you have to eat more to

keep yourself going. When your body starts heading back to normal, I

think the change in food intake is slow in following, so make sure you

watch what you eat, especially as your symptoms subside.

Among most of the members of this list, you'll find a strong anti-RAI

sentiment, just so you have some warning You should definitely read

up on this treatment before you agree to undergo it. There are

potential risks involved, so please research it thoroughly first!

...

__________________________________________________

[Guest guest]

>

> Among most of the members of this list, you'll find a strong anti-

RAI

> sentiment, just so you have some warning You should definitely

read

> up on this treatment before you agree to undergo it. There are

> potential risks involved, so please research it thoroughly first!

>

> ..

Thanks everyone for responding so quickly! I'm glad for the advice. I

was weary of RAI treatment after the speech I got about how I had to

stand 6 feet away from people afterwards. I'm going to talk to my

doctor about alternative treatments, especially since my symptoms

subsided a little after I began exercising regularly and I'm not

planning on having children in the near future. My specialist really

pushed the RAI and I think I may need to see someone else for a

second opinion. Thanks again, and I will definitely do more research

before I consider undergoing the treatment.

:-)

Jen

[Guest guest]

If you don't mind, could you tell me what makes you regret that you

had the RAI? I just wanted some information for when I talk to my

doctor...Thanks so much for your advice!

Jen

[Guest guest]

Hi Jen,

I primarily regret it because it made me severely hypothyroid. I thought this was something I could easily remedy by taking a pill, but it doesn't work that way. Soon after RAI, I developed pretibial myxedema. RAI can trigger both this condition and the eye disease, Graves' ophthalmopathy, which is associated with Graves' disease.

And early on, when I complained hypo symptoms such as weight gain, reduced libido, depression, bloating, my endo said that these symptoms weren't related to being hypo....he said that Graves' people just liked the feeling of being hyper (yeah, right). He said all GD patients just complained all the time when they were euthyroid.

Even when we moved, I found other doctors who echoed this sentiment. And you can find this topic discussed in most endocrinology books.

Finally, after nearly 10 years I found a doc willing to work with me on this and measure thyroid antibodies and order the right labs. Even with a more optimal dose of thyroid hormone, I don't feel as good as I used to. And this doctor ordered a cat scan to find out why I was nauseated so much. Turns out the body of my pancreas is atrophied, and, while there is no way to prove it since this was my first cat scan, radioiodine was likely the cause. Other organs besides the thyroid concentrate iodine and are affected by RAI.

Anyway, I hadn't researched the subject as well as I should at the time and I hadn't realized then that GD is caused by a defective immune system, not a defective thyroid. By destroying my thyroid and never addressing the factors triggering autoimmunity, I ended up developing a second autoimmune disorder, celiac disease.

[Guest guest]

<<Finally, after nearly 10 years I found a doc willing to work with me on this and measure thyroid antibodies and order the right labs. Even with a more optimal dose of thyroid hormone, I don't feel as good as I used to. And this doctor ordered a cat scan to find out why I was nauseated so much. Turns out the body of my pancreas is atrophied, and, while there is no way to prove it since this was my first cat scan, radioiodine was likely the cause. Other organs besides the thyroid concentrate iodine and are affected by RAI. Anyway, I hadn't researched the subject as well as I should at the time and I hadn't realized then that GD is caused by a defective immune system, not a defective thyroid. By destroying my thyroid and never addressing the factors triggering autoimmunity, I ended up developing a second autoimmune disorder, celiac disease>>

Wow, thanks for writing about this. For sure, I will avoid RAI if at all possible. I was pushed and pushed to get it, by both my doctor and the hypnotherapist I was seeing for meditation/relaxation techniques, but I resisted and have been on PTU. Within two months, my numbers were all normal, but I have been using naturopathic, as you all know. I don't know the results yet, since I have only been doing this for one week. I definitely feel better, though. I will trust my body!

Arlene

[Guest guest]

Hi Zoey, glad to hear you're still off meds! Me too! Another test on Friday - I've been off meds since January! Are you taking any supplements? Take care, M ona

newly diagnosed

Hello everyone!I'm 23 and am told I am hyperthyroid. I went for the scan and uptake today. I may have to take the radioactive idodine soon. Just had a few questions. I am always hot, have heart palpitations, shaking, etc...but recently have also been experiencing mood swings. Has this happened with any of you? I feel very anxious at times. Also, did anyone experience weight gain after treatment? Would you reccommend seeking a nutritionist post-treatment? Thanks for everyone's time!:-)

[Guest guest]

In a message dated 8/28/01 1:16:17 PM Eastern Daylight Time, girliegirlj2001@... writes:

I may have to take the radioactive idodine soon.

Do not have the RAI "treatment." Please read extensively through our archives, and read the info at iThyroid. I had Graves Disease over 4 years ago, and the doctor also pushed RAI or surgery. I refused, took meds for a few months, made some changes in diet and nutrition and had some acupuncture, and have been fine and off meds for about 4 years. RAI is no cure, and, in the long run, will cause a worsening of symptoms that are not reversible. As long as you have your thyroid, the illness can be cured.

Good luck,

AntJoan

[Guest guest]

Dear Jen,

Did your doctor inform you that there are conservative options for treating GD, such as the meds, and that 30 percent of GD cases resolve on their own?

I don't understand why he is pushing RAI. I would consider surgery as a last resort (fortunately I didn't have to, as I got well after a few months of taking meds), but RAI is not a treatment at all. The doctors seem not to understand, but RAI, beyond destroying your thyroid gland for life (and you are only in your 20s), also has other profound, long-term effects on other systems and glands in your body. Once you have poisoned yourself in this way, you will be sick for the rest of your life. I have been on this board since it began, and have never heard of a case of anyone being symptom-free after 2 years post-RAI. (Some people may feel OK immediately afterward, but the hypo symptoms may take up to 2 years to appear.) On the other hand, I, and others, have gotten well through controlled use of meds, and supplements/nutrition and other alternative measures. I would ask you to research anywhere you like (I know you were warned that most people on this board are anti-RAI) and ask if ANYONE is well and symptom free 2 years or more after having RAI. If you hear of one such case, I would like to know.

Meanwhile, PLEASE don't do anything drastic.

Best,

AntJoan

[Guest guest]

Hi Jen

Just wanted to let you know that I had RAI in Mar of 2000 and have

been much sicker ever since. From just having GD, I now have Graves

Eye Disease, heart problems that have not yet been identified, osteoporosis

and depression, as well as major migraines, more days with them than without.

The medication that I can take for my migraines conflicts severely with

the meds for depression. So it's treat one or the other, but not

both. If only I had it to do over again...

I gained 40 lbs mostly when I was hyperthyroid, but have subsequently

dieted and mostly maintained myself at 1350 calories daily of healthy food

only, and have lost a grand total of 10 lbs.

And just as a by-the-way, my endocrinologist went off right after I

had the TAI and when I had some fairly major problems she was unavailable.

My family 'doctor' didn't know what to do and did not even have the courtesy

to call me. I ended up at Emerg with a racing-er heart chest

pains, and major panic.

Think carefully what you do. It's your decision. But be

informed.

Kate

AntJoan@... wrote:

Dear Jen,

Did your doctor inform you

that there are conservative options for treating

GD, such as the meds, and

that 30 percent of GD cases resolve on their own?

I don't understand why he

is pushing RAI. I would consider surgery as a last

resort (fortunately I didn't

have to, as I got well after a few months of

taking meds), but RAI is

not a treatment at all. The doctors seem not to

understand, but RAI, beyond

destroying your thyroid gland for life (and you

are only in your 20s), also

has other profound, long-term effects on other

systems and glands in your

body. Once you have poisoned yourself in this

way, you will be sick for

the rest of your life. I have been on this board

since it began, and have

never heard of a case of anyone being symptom-free

after 2 years post-RAI.

(Some people may feel OK immediately afterward, but

the hypo symptoms may take

up to 2 years to appear.) On the other hand, I,

and others, have gotten

well through controlled use of meds, and

supplements/nutrition and

other alternative measures. I would ask you to

research anywhere you like

(I know you were warned that most people on this

board are anti-RAI) and

ask if ANYONE is well and symptom free 2 years or

more after having RAI.

If you hear of one such case, I would like to know.

Meanwhile, PLEASE don't

do anything drastic.

Best,

AntJoan

[Guest guest]

I was diadnosed about a year ago.

I have it in my hips, and knees.

My only relief is the cortizone shots.

I have been on Azulfidine (full dose) for about 6

months (NO CHANGE)!

The cortizone shots are only lasting about 60 days

now. My doc. just started me on Methotrexate shots 1/2

mg once a week (STILL NO RELIEF)

I have been in pain more days than not this year. I

too am active mainly water skiing. I bought a new boat

at the end of the 2000 summer, and this past summer, I

only skied once, and that nearly killed me.

It is very depressing, but you have to be strong, and

not let the pain take down your whole family.

Do what the dac orders, and maybe the meds will help

you more than they did me.

YOU HAVE TO BE STRONG NOT TO LET IT DESTORY YOUR

FAMILY!

It almost did mine, and I got a hold on the

depression.

Good luck, and let me know whenever you want to talk.

I have been there and have some things that helped me

through the pain.

--- dmahon0521@... wrote:

> Hi There. My name is Debbie and I am a 40 year old

> mother of three

> with one grandchild. I have only known about this

> disease for about

> 1 month now. I work for a chiropractor as a

> therapist and massage

> therapist. I started feeling like I had the flu

> about 4 months ago

> and kept getting worse. He suggested we do some

> blood work. He did

> the work up and recommended I go to a

> rhuematologist. Thats when I

> was diagnosed with the PA. Until now, I had never

> heard of such a

> thing! Doing research online is how I found this

> group. I hope

> ya'll can help me cope with this! The pain is

> really severe and

> hasn't let up since the beginning. I keep reading

> that there are

> times of remission or something similar. I haven't

> had one of those

> yet! Currently my doctor has me on Tolmectin? He

> originally tried

> Indocin but it made me too sick. I was in bed for

> three days and

> lost about 5 pounds from throwing up and not eating.

> Not the best

> way to lose the weight! =) Anyway, I was always a

> very active

> person. I ran, played basketball, rode horses,

> hunted, you name it!

> We are a very outdoor oriented family. It is very

> depressing not to

> be able to do any of these things anymore. Also as

> a massage

> therapist my hands are very important. I have lost

> money and clients

> due to this stuff! I really appreciate any help and

> advice you can

> give me and look forward to hearing from you all!

> Thanks,

> Debbie

>

>

>

__________________________________________________

[Guest guest]

Dear Debbie

My heart goes out to you. I know it can seem like a near death sentence having

PA, but we do perservere! I was diagnosed with arthritis at age thirty. I was

also very active, a 7 day a week runner and rollerblader. The beginning was the

hardest because I felt like life had dropped out from under me. I am now 41 and

doing fine! I no longer run, but I

walk every day (it takes a bit more effort!) and still work hard ( I am a artist

who works in steel, the heavy stuff) as often as I can. I honestly have learned

so much about myself from having this limiting condition. I was forced to stop

and take a look at my life and what's important in it. I realized I was going

too fast and pushing too hard and

I was living all on the surface. There had to be more to life than physical

activity. What about people in wheelchairs, and thoses that are bedridden?

WHat is the value of their lives, without freedom of movement? I began to see

that the gift of life is concsiousness, and that no pain can take that away. I

developed a spiritual life to help me

accept a disease I didn't understand. Now, I am very happy, even on BAD DAYS!

True, once in awhile I get a little weepy and feel sorry for myself, because I

deal with chronic fatigue and pain daily, but it passes very quickly and I would

never trade my new life for my old one.

So hang in there! Listen to what's going on inside of yourself. Ask yourself

what your illness means. Be concsious that all the good and lovely things in

life are still true, even though you are suffering. Talk to your family about

your feelings. Your life is a journey, dont be afraid to take it! And please

make sure you get a good rheumatologist

who can help you manage the pain and joint deterioration! You dont have to do

this alone.

with love to you and your family in the holiday spirit,

Barb

[Guest guest]

Dear Barb,

I was so moved by your message to Debbie that I just had to comment. What a

wonderful attitude you have! We could all take a lesson from you...I mean

everyone, not just the people with PA. Bless you.

from PA (coincidence, huh?)

[ ] Re: Newly diagnosed

> Dear Debbie

> My heart goes out to you. I know it can seem like a near death sentence

having PA, but we do perservere! I was diagnosed with arthritis at age

thirty. I was also very active, a 7 day a week runner and rollerblader. The

beginning was the hardest because I felt like life had dropped out from

under me. I am now 41 and doing fine! I no longer run, but I

> walk every day (it takes a bit more effort!) and still work hard ( I am a

artist who works in steel, the heavy stuff) as often as I can. I honestly

have learned so much about myself from having this limiting condition. I was

forced to stop and take a look at my life and what's important in it. I

realized I was going too fast and pushing too hard and

> I was living all on the surface. There had to be more to life than

physical activity. What about people in wheelchairs, and thoses that are

bedridden? WHat is the value of their lives, without freedom of movement? I

began to see that the gift of life is concsiousness, and that no pain can

take that away. I developed a spiritual life to help me

> accept a disease I didn't understand. Now, I am very happy, even on BAD

DAYS! True, once in awhile I get a little weepy and feel sorry for myself,

because I deal with chronic fatigue and pain daily, but it passes very

quickly and I would never trade my new life for my old one.

>

> So hang in there! Listen to what's going on inside of yourself. Ask

yourself what your illness means. Be concsious that all the good and lovely

things in life are still true, even though you are suffering. Talk to your

family about your feelings. Your life is a journey, dont be afraid to take

it! And please make sure you get a good rheumatologist

> who can help you manage the pain and joint deterioration! You dont have to

do this alone.

>

> with love to you and your family in the holiday spirit,

>

> Barb

>

>

>

>

>

[Guest guest]

Hi Debbie....I nearly lost my hands to this disease. It was very depressing

because a was a pro guitarist. Over a 2 year period I tried most of what was

available. Sulfasalasine, MTX, Minocine along with Celebrex and Viox, etc. A

little over four months ago, after a severe flare, I went on Enbrel which has

stopped the disease cold, at least for now. I have some permanent joint damage

from messing around with the other treatments but am on no other meds or pain

killers for the last four months. I would recommend anyone with advancing PA

to consider Enbrel if the other stuff isn't working. It's given me my life

back, allowed me to work, and I can even play my instruments again. RGDS

Ronnie E.

[ ] Newly diagnosed

Hi There. My name is Debbie and I am a 40 year old mother of three

with one grandchild. I have only known about this disease for about

1 month now. I work for a chiropractor as a therapist and massage

therapist. I started feeling like I had the flu about 4 months ago

and kept getting worse. He suggested we do some blood work. He did

the work up and recommended I go to a rhuematologist. Thats when I

was diagnosed with the PA. Until now, I had never heard of such a

thing! Doing research online is how I found this group. I hope

ya'll can help me cope with this! The pain is really severe and

hasn't let up since the beginning. I keep reading that there are

times of remission or something similar. I haven't had one of those

yet! Currently my doctor has me on Tolmectin? He originally tried

Indocin but it made me too sick. I was in bed for three days and

lost about 5 pounds from throwing up and not eating. Not the best

way to lose the weight! =) Anyway, I was always a very active

person. I ran, played basketball, rode horses, hunted, you name it!

We are a very outdoor oriented family. It is very depressing not to

be able to do any of these things anymore. Also as a massage

therapist my hands are very important. I have lost money and clients

due to this stuff! I really appreciate any help and advice you can

give me and look forward to hearing from you all!

Thanks,

Debbie

[Guest guest]

Hi,Ronnie

please redirect all e-mail to duces@...,

thanking you inadvance, Neil .

[

[Guest guest]

Make sure you're aware of the potential serious side effects. I noticed a reduction in hyper symptoms of tremor, warmth and sweating soon after starting but eventually I was told to stop tapazole because of the side effects. Here's what I experienced:

Both elbows and left ankle became painful.

Shoulder recovery from physiotherapy slowed and then pain increased there.

Itchy wrists and ankles

Dull, light headache about 50% of the time.

Sore throat got steadily worse over the couple of weeks I was on the tapazole. Noticeable in morning, usually gone by noon. The sore throat is THE sign to observe. Apparently, it indicates the bone marrow is less functional.

I've got diabetes as well and the subcutaneous injections showed more and more bleeding. They usually rarely bleed. Tiny blobs of blood were eventually always present after an injection.

Noticed increase insulin sensitivity initially.

Mentioned symptoms to GP, said to try to tuff out symptoms. Shouldn't have listened to him, this was bad advice.

Mentioned symptoms to wife, former RN, she checked CPS, suggested I contact endo, due to potential serious side effects. Endo said to stop. I visit the endo tomorrow. Of course, the endo, GP and pharmacist mentioned what to watch for. I thought I had a cold and shoulder pain was pre existing.

After stopping Tapazole:

Above side effects seemed to reduce over a couple of days

Felt very cold in early morning, feet generally are cold.

Hyper symptoms return, but not to previous levels

Decrease insulin sensitivity

I understood the serious side effects were somewhere about 1 in 1000. If you consider side effects are typically underestimate by a factor of 5 to 100,I suppose I could be a 1 in 10 situation. Other people seem to have no problem, It was causing a perceptible reduction in my hyper symptoms.

b.

Newly diagnosed

Hello, I am new to the group.My name is Janice and I was recently diagnosed with hyperthyroidism. I have had a scan and blood tests done and now my endcronologist wants me to start on tapazol.I was just wondering what other's experiences have been Tapazol?Thanks for any information.Janice