just diagnosed

[Guest guest]

Hi Mika, thanks for the advice, the free dancing sounds great, i might give that

one a try. The Lodine seems to be working at the moment so i think i'll run with

it for now and see how it goes for the next 3 months befor ei have my next Dr's

appoinment but its good to now that there are alternatives that are working for

other people. I do take cod-liver oil but i'll try evening primrose etc, see if

they help. My supplement cabinet grows bigger by the day!!!

Thanks for the advice on the backpacking , sounds like a good idea, i'll be

speaking to my Dr about it next time i see him.

Sorry Meghan didn't realise you meant therapeutic swimming, not sure if they do

it near me, but i'll check it out, i'll give anything a try if its a good

alternative form of exercise.

Cheers & best wishes

Dave

> from: mika93 <mika93@...>

> date: Mon, 06 May 2002 20:22:26

> to:

> subject: Re: [ ] Re: Just Diagnosed

>

[Guest guest]

--welcome david,i hate to hear you have pa. i was around 27 had been

breaking out with p for about 10 years. two years after the death of

my mother came alot of pain and i mean everywhere. i could not walk

when getting out of bed i would have to hold on to things to go to

the rest room. sometimes i would get up and pain hit me so hard in

the lower back i would go to the floor and be there for a while since

i live alone then and now. i waited on gooing to the doctor because i

just knew i was dying and i did not want to know from what. at 28

years of age i did not have enough energy to finish a work day. i now

take arava,naprosin and pain pills and muscle relaxers daily. i had

to get cortisone shoots i each hip a few weeks ago and they helped a

little but they want to to deeper nextime. i mowed my yard a few

weeks ago and it took me down for three days in pain so i am now

paying someone to mow. i am still doing veggies and flowers and

hedges but those dont seem to bother me too much.the last few weeks i

have felt better than i have i a very very very long time i still

have alot off pain but it is tollerable for now. like evryone said

listle to your body. i was almost 200 lbs and i took it down to 165

in about three months and want to lose five moore and i will. i also

bought a weight bench that has the resistace bands instead off free

weights loosing the fat and working out just a little has helped me i

do not go overboard on working out but i do what i can and don't even

worry about how many reps. i wish you well. rest when you can and

play when you must:) we are all here for u..

In @y..., lpressley@b... wrote:

> Hi all, i've just been diagnosed with PA by a specialist here in

Cardiff South Wales (UK). I've had a painful neck/spine for about 2

years now and it began after weight training (which i've now stopped)

i went through physio, x-rays, blood tests etc and no-one seemed to

know why it was not going away, i had stiffness in the morning,

tingling/numbness in shoulder blades etc and i sort of new something

arthritic was going on but people thought i was just being paranoid.

I've been trying to figure out what the environmental trigger was and

i think it may have been a viral infection or the mercury in amalgam

fillings ( now you really think paranoid!!)as my joints seemed

really rough/clicky almost in the space of a week. I have Psoriasis

on my scalp and elbows but i control it with creams etc. The

specialist said i have a mild form of the disease but i'm wondering

if it starts out mild and then progresses as u age, i'm 29 years old.

I think i have the spinal form of PA, does anybody know about the

progression of the spinal form? and can anybody give me any advice

on exercise, obviously i don't do any weight training just cycling

and stuff but should i be exercising my shoulders neck etc? The

specialist has put me on 600mg of Lodine, has anybody tried this

drug, as i've heard you get stomach problems with NSAIDs. Thanks for

any replies.

>

> Best Wishes

>

>

>

> [

[Guest guest]

Hi Magicman, thanks for the advice, sorry to hear u've been in so much pain,

just hope it keeps getting better for you. I would say i was probably slightly

overweight about 10lbs maybe, i just need to cut out some of the fatty foods in

my diet, got a bit of a sweet tooth you see. But i eat quite healthily on the

whole. I'm trying to avoid heavy lifting at the moment, but sometimes it just

can be helped, especially in work.

Best Wishes

Dave

> from: txtwin2002 <magicman99@...>

> date: Wed, 08 May 2002 06:05:46

> to:

> subject: Re: [ ] Re: Just Diagnosed

>

[Guest guest]

Elisbeth.....ummmm I hope someone else can offer you advice. With me, I

plodded thru it all. My family took a while to understand the effects of

mood swings were from pred and not just that Id turned into a raving

lunatic. Always take pred very first thing in morning to lessen adverse

effects. Eat healthy & watch out for the pred sugar cravings....rather than

fill myself up with all sorts of sweet foods...I literally ate half teaspoon

of sugar every now and again to satisfy the craving. If your diabetic your

dr will advise you. Weight gain will happen even if you eat only a tomato or

apple a day. Dont eat fatty or 'junk' food as itll be hard to get the weight

off when you come off pred. With small children, youve got your hands

full....rest up as often and as much as you can. Insomnia can be a problem,

some people take something to help them sleep. I never did I just went with

the flow but I never tossed or turned, I just got up until I felt I could

sleep. I catnapped my way thru it. Also I was a v.active person, always

running instead of walking....I learned to slow down and it lessened

dizziness, headaches etc. The muscle aches should lessen after a couple of

weeks. I hope others will offer their experiences. The light at the end of

the tunnel will appear as when your LFTs come down, your docs will wean you

off the pred completely or keep you on a much lower kinder dose. Take care,

slow down & rest up when you can.

Love Jan

[ ] just diagnosed

> HI everybody I have just been diagnosed a few days ago with

> aih and I find all the info here very helpful. I am currently

> on 30 mg of prednisone and taking something called ursodiol 3x

> a day. I am finding the side effects of the meds very hard to

> deal with. Headaches, body aches, weight gain , moody just to

> name a few.... Does anybody have any ideas on how to cope with

> these side effects ??? I am 27 years old with 2 small children and

> don't want them to have to deal with this too.

>

> thank you Elisbeth

>

>

>

>

[Guest guest]

beth,

Welcome to the club, I was diagnosed when I was 28, just a year older than

you. I am now creeping towards 50 so the disease lasted along time for me!

The prednisone is the standard approach to reducing the inflammation. Some

here also have it coupled with Imuran or 6MP, or some other drugs you will

here about.

The side effects from prednisone are nasty but will subside as your dose

drops. The mood swings in particular seem to be associated with the higher

doses. At lower doses I felt lethargic and incredibly puffy, this too will

pass.

Ursidol, the other drug you mentioned is the same as the drug we often

discuss called actigall. It is a synthetic bear bile which makes the bile in

your liver less viscous (thick) so the bile flows more easily through the

ducts. Mt GI gave it to me to prevent sludge from accumulating in my liver

(sludge is particulate matter in the bile similar to a drain and if the

sludge does not flow out then it can get clogged).

Coping with the side effects is the hardest thing I had to do, my approach

was to do the best I could in spite of them. Hunger was the worst for me. I

adopted a rule of not eating anything between meals and only eating the food

on my plate to the point where I was no longer hungry. It's tough if you

remember your mother telling you about all the starving kids in China.

Others will share their strategies. Welcome, you & your kids will be fine.

Patty

[ ] just diagnosed

HI everybody I have just been diagnosed a few days ago with

aih and I find all the info here very helpful. I am currently on 30 mg of

prednisone and taking something called ursodiol 3x a day. I am finding the

side effects of the meds very hard to

deal with. Headaches, body aches, weight gain , moody just to

name a few.... Does anybody have any ideas on how to cope with

these side effects ??? I am 27 years old with 2 small children and don't

want them to have to deal with this too.

thank you Elisbeth

[Guest guest]

Hi Shana,

I have information on my web site,

http://daisyelaine_co.tripod.com/gravesdisease/

and I have quite a few articles on www.suite101.com that you can find by

doing a search on elaine moore or graves' disease. You might want to read the

101

article titled What's the Rush? Best to you, Elaine

[Guest guest]

I have another question, do I have graves disease??

This all is confusing!

> Hi Shana,

> I have information on my web site,

> http://daisyelaine_co.tripod.com/gravesdisease/

> and I have quite a few articles on www.suite101.com that you can

find by

> doing a search on elaine moore or graves' disease. You might want

to read the 101

> article titled What's the Rush? Best to you, Elaine

>

>

>

[Guest guest]

Hi Shana, first thing I'd say is don't panic. I was diagnosed as

HyperT/Graves disease in Nov 2001 and got my anti thyroid drugs in Dec

2001.

the more you enducate yourself, the better off you'll be. I've had three

Dr's tell me that I should do RAI but I am stubborn....and refused. I've

been on meds for quite some time now, and although I've had some ups and

downs, but for the most part, I'm glad I made no 'rash decisions' on how to

handle this. I am a procrastinator at heart so putting this off till the

'right time' turned out very well for me! :-)

Be sure to check out the link Elaine mentioned. :-)

Sandy

Original Message:

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

From: Shana Leigh shana.herrington@...

Date: Mon, 09 Jun 2003 18:05:18 -0000

hyperthyroidism

Subject: just diagnosed

<html><body>

<tt>

Just diagnosed and a bit overwhelmed by it all, <BR>

<BR>

anyhelp is greatly appreciated, support, meds, sites, symptoms ect., <BR>

<BR>

Thanks<BR>

<BR>

Shana Leigh M.A.<BR>

GYN Oncolgoy<BR>

NW Cancer Speicalties<BR>

<BR>

</tt>

<br>

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<tt>

[Guest guest]

Robin when you see your dr. again, could you ask him specifically what the

health risks are of anti thyroid drugs? My last dr. also indicated that ATD are

a more serious health risk than radiation and becoming hypo. The dr. I use

now has told me he has had patients on ATD for 20 years with no problems.

I'm not sure what to make of it, I'm not sure if it's a scare tactic or what.

Sandy

[Guest guest]

Dear Sandy:

As far as I know, ATD lowers your white blood cells and thus reduces your

immune system. Also, it may affect your liver function. Therefore, your

doctor

needs to do the complete blood count and liver function blood tests

occasionally. Most people does tolerate the medicine though. My family

doctor

said she has a patient been on ATD for 20 years as well with no side affects.

However, I believe ATD is a much better choice than RAI and Surgery which you

cannot do anything about it once its done.

Pam

[Guest guest]

Hi Robin,

The risks from the anti-thyroid drugs are minimal when used properly. I had

radioiodine and couldn't recommend it.

You can't really adjust the dose to avoid hypoT because lower doses of RAI

cause more cell mutations and have a higher cancer risk.

Keep reading and don't feel like you have to rush into anything. Even if you

were to have RAI, you should start with meds to bring your levels into the

normal range first.

Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/

Take care,, Elaine

[Guest guest]

Robin,

I too was diagnosed as hyperthyroid with all the horrible symptoms.

The doctor wouldn't listen to any symptoms just said " deal with it " -

let's radiate your thyroid and then will deal with any remaining

symptoms.

Thank God, I found ithyroid.com. It is a site that explains all the

symptoms and how to deal with them. If you take regular vitamins and

minerals you can possible go into remission. Many have. I started

taking the vitamins and had wonderful success with them. I got my

brain back, quit trembling, and am controlling the heart problem with

potassium/magmesium. It's amazing.

If you don't chose to use vitamins you can still learn a lot off this

site. It's very informative!!!

Hope you find the answers you need. Been there.

[Guest guest]

Welcome~

I was about your age when I was diagnosed myself. I am now 55. I was told that

I had arthritis when I was 17.

This group is VERY active and you'll get lots of e-mail.

The group is a GREAT place to learn and ask questions. Everyone has different

things happen to them with different drugs.

Best thing you can do for yourself is keep a positive attitude and when one

thing doesn't work, try another.

Nanc

[ ] just diagnosed

Hello, I have just recently been diagnosed with PA. I am 36 and have

had psoriasis since I was 12. Hope to get to know everyone in this

group. thanks.

[Guest guest]

Hi Barbara, nice to meet you.

Treatment for the disease is thyroid hormone replacement. This is

done with pills, usually taken once a day - although sometimes the

dosages are split.

The most popular treatment protocols are:

#1 - Synthroid, or Levoxyl, or generic: this is the hormone T4, the

main hormone produced by the thyroid.

#2 - Armour: this is natural thyroid hormone, the desiccated thyroid

gland of a pig. This contains not only T4, but also T3 (the active

form of the thyroid - T4 is the " storage " form), and also calcitonin,

T1, and T2 (nobody knows what T1 and T2 do exactly yet). An

alternative is Naturethroid, which is the thyroid gland of cows.

#3 - Thyrolar, or Synthroid + Cytomel: these are combinations of the

hormones T3 and T4. In theory, everyone should convert the T4 to T3

just fine, but in reality some people have trouble converting. I am

one of those, and I am on Synthroid + Cytomel.

Some people also have other protocols, such as Armour + Synthroid or

Armour + Cytomel.

You are right, you are gonna have this for life. If the disease is

treated correctly and you are on the right dosage of the right

medication, you will forget you have it other than when it is time to

take the meds. If badly treated, you can have very bad side effects.

I warn you that most of us on the groups are not on the right

treatment yet - not because it is impossible to achieve health, but

because it is the nature of the groups. Usually when people are happy

and healthy they are too busy living life to be in the groups - when

we are not ok, we need the support the most.

Jan

> Hi, I received news from my doctor yesterday that I have

hypothyroid

> disease. After checking with family members, I discovered that 3

> people on my mom's side of the family also had thyroid problems.

>

> My dr found out thru a blood test.

>

> I don't know what to expect other than I will have this for the

rest

> of my life. I have done some research on the net and have found

that

> a lot of what I have chalked off to stress and depression are

> actually symptoms of thyroid disease.

>

> I would love some information from anyone as to treatments, side

> effects, generally anything that has to do with this disease.

[Guest guest]

Some of us are on these groups because we suffered for so many years from

poor/no treatment. It's a form of therapy to make sure it doesn't happen to

others.

Gracia

> I warn you that most of us on the groups are not on the right

> treatment yet - not because it is impossible to achieve health, but

> because it is the nature of the groups. Usually when people are happy

> and healthy they are too busy living life to be in the groups - when

> we are not ok, we need the support the most.

>

>

> Jan

>

>

>

> > Hi, I received news from my doctor yesterday that I have

> hypothyroid

> > disease. After checking with family members, I discovered that 3

> > people on my mom's side of the family also had thyroid problems.

> >

> > My dr found out thru a blood test.

> >

> > I don't know what to expect other than I will have this for the

> rest

> > of my life. I have done some research on the net and have found

> that

> > a lot of what I have chalked off to stress and depression are

> > actually symptoms of thyroid disease.

> >

> > I would love some information from anyone as to treatments, side

> > effects, generally anything that has to do with this disease.

>

>

>

>

[Guest guest]

I agree with both of these posts---there are many reasons why people

post. And I do think that the majority of us want to share our info

and want to prevent the mishaps that happen to us.

It's a great benefit for us to share our experiences and info. When

you help others you do help yourself as well!!!! I know I have

learned more from this group than from anything else!! And it's been

a huge help to me!!!

tina

> > > Hi, I received news from my doctor yesterday that I have

> > hypothyroid

> > > disease. After checking with family members, I discovered that

3

> > > people on my mom's side of the family also had thyroid problems.

> > >

> > > My dr found out thru a blood test.

> > >

> > > I don't know what to expect other than I will have this for the

> > rest

> > > of my life. I have done some research on the net and have found

> > that

> > > a lot of what I have chalked off to stress and depression are

> > > actually symptoms of thyroid disease.

> > >

> > > I would love some information from anyone as to treatments, side

> > > effects, generally anything that has to do with this disease.

> >

> >

> >

> >

[Guest guest]

Dear Elle,

Please go to iThyroid.com to find natural ways to treat your illness, to be

used in conjunction with medication. Hair loss is common with hyperT, and will

reverse when you take medication and become stable. Most people do really

well with the meds, nutrition, supplements and stress reduction techniques.

Good luck,

AntJoan

[Guest guest]

In a message dated 12/28/2003 3:55:21 PM Eastern Standard Time,

snowfalls_05@... writes:

Sorry you were just diagnosed it is scary when we are first

diagnosed with GD. January 14th insn't that far away but I would

look into making sure your on a beta blocker to stop the heart

palpitations this disease

Yes, getting on a beta blocker right away is a good idea. Also, please know

that your endo probably will recommend RAI or surgery to treat Graves, as this

is the treatment of choice in the West. In Europe, ATDs (meds) are the

preferred treatment, and in China, acupuncture and nutrition/herbs. RAI and

surgery are not good options, as they are permanent, and often cause more

problems

than they address. Meds, along with supplements/nutrition/alternative

medicine, works for most people. It may take some time to get it right, but,

once you

find what works for you, you should feel fine. Lots of people go into

remission w/Graves, or feel fine taking meds for as long as needed. Graves is

caused by some imbalance in our systems, and is not a disease of the thyroid

itself, so radiating the thyroid (RAI) or removing it, does not solve the

problem,

although most doctors in the U.S. do not seem to understand this. So, be

prepared to ask lots of questions at the endo's, and to be assertive.

And, we are here for you, so let us know how you are, and what you need.

Best,

AntJoan

[Guest guest]

Hi Elle,

Sorry you were just diagnosed it is scary when we are first

diagnosed with GD. January 14th insn't that far away but I would

look into making sure your on a beta blocker to stop the heart

palpitations this disease at first is hard to be treated just

naturally at first we must get stable then look at natural

approches. GD is very serious and life theatening if you don't

receive proper medical care at least beta-blockers until they can

put you on ATD therapy.

Also its not necessary to see a specialist a GP can handle Graves

disease and ATD monitoring and labs. Hair loss is common but hair

gross back same thing happened to me. Stress does not help out our

disease.

Try visiting the Mediboard.com site as well and joining that board.

hope this helps

Alegra

[Guest guest]

Hi Elle,

Hair loss is related to thyroid hormone imbalance, and stress is thought to

be the main trigger for Graves' disease, which is the most common form of

hyperthyroidism. Other triggers and contributors include excess dietary iodine,

viral infections and cigarette smoke.

Today, treatment for hyperthyroidism is very effective and meds can help you

achieve permanent remission. Once your thyroid hormone levels are brought back

into balance you should feel a lot better. Best, Elaine

[Guest guest]

Hello,

My name is Leonora and I was just diagnosed with PA this week. I find that while

I experience transient pain in various joints the most debilitating pain is in

the balls of my feet in the metatarsal area to the point where I can't walk

barefoot or in anything other than sneakers.

I have been on 200 mg of Celebrex for 4 days and have tried other things like

Vioxx in the past for the pain but it doesn't seem to do the trick. My doctor

recommended that if the pain does not improve I should go on a DMARD like

methotrex (sp?). I was wondering what your experiences with these drugs have

been and if the side effects are indeed as devastating as they seem. I was also

wondering how disabling the disease tends to be.

Any advice or support would be greatly appreciated.

Leonora

[Guest guest]

In a message dated 1/30/2004 8:45:54 PM Eastern Standard Time,

leonoraseinfeld@... writes:

transient pain in various joints the most debilitating pain is in the balls

of my feet in the metatarsal area to the point where I can't walk barefoot or

in anything other than sneakers.

Leonora,

If you are looking for some short term relief with your feet, I would

recommend a few things...a hot bath before bed will alleviate the stiffness in

the

balls of my feet the next morning, also, I use a paraffin bath (commercial

grade, so my feet fit in it) that helps if I am in a lot of pain. And my

physical

therapists have taught me that massaging the areas that are in pain will bring

fluid to the joints, which can also ease the pain and make it easier to walk.

None of these is a substitute for the meds, but can offer some short term

relief while you figure it all out!

[Guest guest]

Hi Chermel,

Welcome to one of the nicest and understanding groups around. Have you

seen a Gastro or Hep Doctor yet? I was just diagnosed in October and

started treatments already, so far so good. Everyone here help me though my

worst fears and stood by me while I was trying to understand what was

happening to me. Feel free to ask as many questions as you like. Do you

have to go in for a liver biopsy?

[ ] just diagnoised

i have chronic hep c stage 2 liver enlarged i need support and

understanding not on meds yet

[Guest guest]

Hi there!

Welcome to our friendly helpful group! What is your name?

The place to start is with reading the article sent to you when you

joined, i.e. " How to Successfully Overcome Candida " - there is no

substitute for learning and educating yourself. You need to

understand how candida works and how to stop feeding it first - that's

in the article. The diet is most important because it builds up your

immune system so it can keep candida under control, and because the

body needs nutrients in order to heal.

There are some very handy diet lists in the folder " Candida Diet "

too. Start one step at a time - don't try to do too much at once or

you will get sicker. But do read the article - it is well worth the

time effort my friend. There are some very important things you need

to understand about good foods and bad foods as well. Get back to us

with your questions after.

We are here to help you!

The best in health, Bee

> hi, i was just diagnosed with candida and im abit overhwlemed!

where to

> begin and how to begin. Any suggestions?

[Guest guest]

Hi Luna,

Welcome to the group. This is the best diet & recommendations for

candida. It's recommended that newcomers begin by reading the files. First

read " How to Successfully Overcome Candida " . I read & printed the food list

secondly & all other files that pertain to

my specific conditions. Also read the emails since so many people here are

so well informed & have been on the diet for some time. After you've read

the files, come back & ask specific questions.

Blessing & good luck,

Caroline

From: " lunadec99 " <lunadec99@...>

> hi, i was jut diagnosed with candida and im abit overhwlemed! where to

> begin and how to begin. Any suggestions?