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Dear casaria,yes systemic JRA and all forms of JRA can be a mystery.Each

child id differant,they have differant disease levals and they respond to the

meds differantly.Thank goodness you have a diagnoses,especially if your

precious baby started having symptoms at 6 months.It is very hard in the

beginning,your child crying and screaming in pain,not knowing what to do to

help.You did not mention what kind of treatment she has started.It takes a

few months for the drugs to work,but when they do you will start to see

improvements.Tell your childs story it gives us a better understanding,we are

all here to help,ask away. Becki and 3systemic

snickers4you_2000 wrote:

> I am glad to have found a group of parents of JRA sufferers. My

> daughter who will be 3 in May has just been diagnosed with systemic

> jra. We were relieved to have a name for the fevers and eye aches

> and aches and pains she has suffered since 6mos of age. We don't

> have much help out here in Oregon. Hopefully we will find more. My

> daughter and I go through many sleepless nights when her attacks pick

> up. Usually they last 3wks, then we have a few days off just waiting

> for it to pick up again. She has just become ill again, fevers of

> 103.8+, screams about her eyes hurting, knees and arms hurting her.

> I hope that if enough of us get together we can gain some great

> knowledge of this mysterious phenomenon. I thank all of you for

> making this group. I don't feel so alone anymore.

> Thanks from me, Casaria, and my daughter, Tasie.

>

>

>

>

>

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Hello and welcome..this is a wonderful site..i wish i would of had this when

Tabitha was diagnosed with poly jra back in Dec.of 89'. I feel for you to

have waited that long for a diagnosis..must of been heart wrenching..because

i know Tabitha being in pain at the age of 4 and a half was hard and still

is to this day at 17.

What meds are your daughter on and do you have a good rheumatologist?

Please feel free to ask any questions you need to..there are lots of parents

on here who deal with kids who have systemic jra and would be more than

happy to answer your questions..I would also..if I am able to.

Even if your having a rough day and need to vent..vent away..we will

listen..

good luck and (((hugs)))to you and your family..gentle one for Tasie(cute

name)

karen(tab17..poly)

p.s..have a Happy Easter

From: " snickers4you_2000 " <snickers4you_2000@...>

Reply-

Subject: New to the group

Date: Fri, 29 Mar 2002 01:03:28 -0000

I am glad to have found a group of parents of JRA sufferers. My

daughter who will be 3 in May has just been diagnosed with systemic

jra. We were relieved to have a name for the fevers and eye aches

and aches and pains she has suffered since 6mos of age. We don't

have much help out here in Oregon. Hopefully we will find more. My

daughter and I go through many sleepless nights when her attacks pick

up. Usually they last 3wks, then we have a few days off just waiting

for it to pick up again. She has just become ill again, fevers of

103.8+, screams about her eyes hurting, knees and arms hurting her.

I hope that if enough of us get together we can gain some great

knowledge of this mysterious phenomenon. I thank all of you for

making this group. I don't feel so alone anymore.

Thanks from me, Casaria, and my daughter, Tasie.

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

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  • 2 weeks later...
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Hi in answer to your question about how it all started for me was. I felt extremly tired all time regarless of how much sleep i had, then i started to itch all over and felt very sick at about the same time i noticed that my urine had changed colour so that it was like cold tea and my bowel habits changed i can't think of any nicer way to put it. At this time i went to the Doctors who took blood test and he phoned me the next day to say that i was close to liver failer and was admitted to hospital immediatly were i stayed for several weeks looking very yellow my Billirubin was over 2000 and the ALT was 1600 so it was rough. Since then i have been in and out of hospital several times its like visiting old friends they all know me. I was eventuly diagnosed in 1998 with AIH and Cirrhosis in 2001. For me its not all bad I cant work that is because of the AIH but i also had a stroke last November and I have to manage on sticks if i go out i have to use a wheelchair but i have been lucky i have a lot of friends who have stuck by me and come to see me every week and take me out so i have found out who my friends really are, also i have a very good hubby and he does all he can for me. I am truly blessed. Sorry i didn't mean to waffle on for so long once i get started i cant stop. Look after yourself you are in my thoughts Jeanette UK

savedbybunnies <rbsteff@...> wrote: I hope you don't mind that I joined in and have been reading your posted messages. My Dr. i the fence as to whether I have CMV hep or AIH. My dr. thought I was going into remission the last couple of months, then this past week my enzymes shot up to three times what they were last time (which was about three times higher than normal then). I really don't understand all the symptoms or what to expect. It seems I try to rationalize my ailments as being tired, or not getting enough rest...and of course my epilepsy doesn't help either. But then when I see my dr. he just ticks it off the list of symptoms.Can anyone share with me what their beginning symptoms were and how it progressed? It seems all the research I do conflicts with everything I found before. Any help you can give would be greatly appreciated.

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Hi,

First, I was wondering if you could tell us your name? It just helps

when talking back and forth, I think.

I was dx with AIH 10/2000. Prior to my dx I had been extremely!!!!

tired. I had also been getting fluish like symptoms for about 8 mo.

About every 2wks I would be calling the doctor just not feeling very

good. I finally said the the doc the end of Sept. that it was

getting ridiculous and something else had to be wrong. I was

sleeping every chance I got including breaks during the day at work.

I would go home a go immediately to bed and sleep till I had to go

back to work. I also had some pain in what I now know is my liver

area. I taught Eng. not Sci. thank God :?) I had some itching

around my stomach. I think I have heard these same symptoms from

just about everyone. Give or take a couple.

I have been on prednisone for a year and 5mo. along with imuran and

ursodial. My blood count has been normal for about 4mo now and I'm

down to 2.5mg of prednisone. I will know soon if I get to go off of

it.

Hope this helps. Let me know if I can help.

By the way, we're very glad you've joined. I think I can speak for

the group. This is a great bunch of people with a lot of knowledge

Debbie/FL

> I hope you don't mind that I joined in and have been reading your

> posted messages. My Dr. in on the fence as to whether I have CMV

hep

> or AIH. My dr. thought I was going into remission the last couple

of

> months, then this past week my enzymes shot up to three times what

> they were last time (which was about three times higher than normal

> then).

>

> I really don't understand all the symptoms or what to expect. It

> seems I try to rationalize my ailments as being tired, or not

> getting enough rest...and of course my epilepsy doesn't help

either.

> But then when I see my dr. he just ticks it off the list of

symptoms.

>

> Can anyone share with me what their beginning symptoms were and how

> it progressed? It seems all the research I do conflicts with

> everything I found before. Any help you can give would be greatly

> appreciated.

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  • 4 weeks later...
Guest guest

Hi Joe,

Welcome to the group. I'm glad you found us. Have you been

diagnosed yet? I was diagnosed with Autoimmune Hepatitis in March

and there are many other new people who have joined our group. There

are many people who have extensive knowledge and compassion to help

with support and questions. I will be praying for you as you go to

Mayo tommorrow. Let us know how it went and tell us more about

yourself.

God Bless,

Ruth

> Hi ever one my name is joe and im new to the group my alt and blood

> work have been high for the past year and i have had a liver biopsy

> last april and had a major surgy in jan the main artey that suppley

> blood to the liver was not working they have it fixed but liver

test

> are high again and pain is back I go to mayo again tommory i have

> learn a lot from the group thanks for all your sharing it has help

me

> a lot thanks from joe in siouxfalls sd

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  • 3 weeks later...
Guest guest

In a message dated 05/22/2002 12:36:29 AM Eastern Daylight Time,

nutter@... writes:

> shortly after A doctor diagnosed me with the Childhood disease called

> the ( Fifth's Disease).

Hi Janice - I was diagnosed with this as well before they realized it was PA.

Apparently I show a few antibodies to Fifth indicating that at some point I

must have had it, but they didn't know if that was as a child or whether it

was somehow related to the PA flare.

I find it fasinating that all of us have so many diseases/diagnoses in common.

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Janice, have you had any lasting problems from Fifth's. I just ask because I

contracted that virus in 1996 and then again in 2000 (after they say you get it

only once) and have had problems throughout.

How are you treating your PA?

(btw, welcome!)

[ ] new to the group

Hi,

My name is Janice , I am 36 years old and have had P since age 5 , and was

diagnosed with PA 5 years ago, shortly after A doctor diagnosed me with the

Childhood disease called the ( Fifth's Disease). It has mostly affected my

Thumb, fingers,Toes, Elbows & Hips.

Look forward to hearing from you.

Janice

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Hi Janice, new to the group also. I am 35 years old and have had

p since I was little and was diagnosed with pa 3 years ago. The

doctors thought I had Gout at first on my foot but when it started on

my fingers they sent me to a rhuematologist who diagnosed PA straight

away. It affects mostly everywhere now as been on many medications

but nothing has worked as yet. Still hoping maybe one day I'll feel

better and not be sore.

look forward to hearing from you Wilma.

> Hi, My name is Janice , I am 36 years old and have had P since age 5 ,

and was diagnosed with PA 5 years ago, shortly after A doctor

diagnosed me with the Childhood disease called the ( Fifth's

Disease). It has mostly affected my Thumb, fingers,Toes, Elbows &

Hips.

>

> Look forward to hearing from you.

>

> Janice

>

> [

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  • 1 month later...
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Bgm,

Hello and welcome!

> I am VERY frustrated since I cannot get any doctors to diagnose me as

> hypo. I am taking a product called T100X as a suppliment and have

> been taking it for a year. It has made a vast improvement in my

> health since I started. I have seen a specialist before I started

> with this hormone suppliment and he said that I was borderline, but

> wouldn't treat me because I was only borderline. I live in Canada,

> so I'm rather limited with meds and doctor options.

>

Do you have match the symptom profile for hypoT? Low daily body temp, etc?

If you have all the symptoms, including a TSH that reads normal, you could

have what's called subclinical hypothyroidism. That's what I have. My doc

calls it 's Thyroid Syndrome and he treats me based on my symptoms not

blood tests because my TSH is always normal.

> The question that I have is really related to fatigue. I am tired,

> bone tired all the time. Does anyone have a suggestion about what I

> can do to relieve this constant tiredness? I'm desperate! If I put

> my head down for 60 seconds, I'm asleep. It's hard at work. My

> concentration is affected. It is wrecking everything and I need to

> get some kind of relief.

This is the very reason I finally got off the couch and looked for a

holistic doctor who would treat me by my symptoms! I was falling asleep at

work. And I work standing up! And I was falling asleep driving less than

five miles from my house! Too scary! I'm not a doctor so I can't say for

sure, but it sounds like you definitely need medicine! Mine is pure T3

(liothyronine) with a timed release agent. It has saved my life! There's a

website you can read more about WTS on: <A

HREF= " www.wilsonsthyroidsyndrome.com " >www.wilsonsthyroidsyndrome.com</A> There

is a doctor list there and you might get lucky and find someone near you who,

even if you don't have WTS, he/she might have a little more open mind to

ordering medicine for you. Alternatively, (if the profile sounds like you)

you could order the infomation kit from 's to take to your own doctor

if you feel there might be a chance he/she would be open to actually trying

to save your life rather than just telling you nothing is really wrong! In

any case, write back to let us know how you're doing!

All the best,

in LA

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Borderline in what way? Is your TSH borderline? The

TSH test is not worth much. Have you had a FREE T3 and

FREE T4 test?

Have a look at:

http://personal.lig.bellsouth.net/lig/w/u/wurmstei/

Ron

--- bgmcansh <bgmcansh@...> wrote:

> I'm new to the group so I'm likely asking stuff

> that's already been

> asked/discussed. Forgive me for going over old

> stuff again.

>

> I am VERY frustrated since I cannot get any doctors

> to diagnose me as

> hypo. I am taking a product called T100X as a

> suppliment and have

> been taking it for a year. It has made a vast

> improvement in my

> health since I started. I have seen a specialist

> before I started

> with this hormone suppliment and he said that I was

> borderline, but

> wouldn't treat me because I was only borderline. I

> live in Canada,

> so I'm rather limited with meds and doctor options.

>

> The question that I have is really related to

> fatigue. I am tired,

> bone tired all the time. Does anyone have a

> suggestion about what I

> can do to relieve this constant tiredness? I'm

> desperate! If I put

> my head down for 60 seconds, I'm asleep. It's hard

> at work. My

> concentration is affected. It is wrecking

> everything and I need to

> get some kind of relief. Somebody must have some

> sort of answer.

> Any suggestion would be worth a try.

>

> Email me at bgmcansh@... Thanks.

>

>

__________________________________________________

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>>

> A year ago, I quit my full-time job to work at home because I

missed so much work due to the chronic fatigue.

,

I think it's hard (maybe impossible) for someone who isn't affected

by candidiasis to understand just how debilitating the fatigue is. I

know my husband doesn't understand it. I, too, am working at home now

for the past several months. Being able to work on my own body

rhythms (as sluggish as they may be!) sure beats having to be at an

office same time every day! But I still want my energy back. I can

hardly remember what it was like not to be fatigued every day. I'm

looking forward to remembering, though!!

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----- Original Message -----

> I'm new to the group, just joined today.

Welcome.

> I'm JUST starting a candida diet today. It's so overwhelming, though.

> I'm such a carb addict that it's hard to imagine WHAT I will eat if I

> don't eat any of the " Don't Eats " on the list!!

Try to find the foods that you *should* eat, and concentrate on what *is*

available to eat. Find good vegetables and meats to eat and enjoy. Maybe

some nuts or nut-butters. It isn't easy. Also drink lemonade - just lemons

and water, or add a little stevia. That helps.

> Not to mention the fact that I have a husband and two children, and I

> have to feed them, too, and I don't know how I'll manage to feed them

> while feeding myself on these diets.

(((hugs))) I understand the dilemma. When I started modifying my diet, and

sometimes cooked two dinners. Yuck. Now we have primarily meat and

vegetables for dinner, and if some of the family wants bread or a sidedish,

they can add that to dinner. The whole family eats better now. I try to keep

vegetable or protein snacks on hand, use olive oil and butter, and

occasionally try new supplements.

Kirsten - battling candida/yeast, allergic to corn, wheat

<>< Mother of 3 - Becca, 10,

, 4 eczema - allergic to milk (not dairy), wheat, corn (outgrown

oats, and others)

and Kiyanna 1 yo eczema - allergic to dairy and breastmilk allergic to

milk, wheat, oats, corn, peanuts, cashews, sugars, soy, eggs

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>

>> Try to find the foods that you *should* eat, and concentrate on

what *is*

> available to eat. Find good vegetables and meats to eat and enjoy.

Maybe

> some nuts or nut-butters. It isn't easy. Also drink lemonade - just

lemons

> and water, or add a little stevia. That helps.

Kirsten, thanks for the tips. I am grateful that it's summertime and

my garden is beginning to explode with vegetables, so I have lots of

veggies available to eat. I've never tried stevia before, but I think

I'll have to get some and try it. What proportions do you use to make

lemonade, if you don't mind?

> and Kiyanna 1 yo eczema - allergic to dairy and breastmilk

allergic to

> milk, wheat, oats, corn, peanuts, cashews, sugars, soy, eggs

I'm just curious, what did you feed Kiyanna before she was able to

eat solids? What a challenge! No breastmilk, soy or dairy!!

Thanks for the note and encouragement, Kirsten!

Can you ... or anyone else here ... tell me about your experiences

with meat/protein intake? Just here in the first couple of days, it

seems like my protein intake will have to increase quite a bit to

compensate for the reduction in carbohydrates. I'm worried about my

body's reaction to more protein all of a sudden. Any advice?

Thanks,

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----- Original Message -----

From: " shellyrae00 " <shellyrae00@...>

> > and Kiyanna 1 yo eczema - allergic to dairy and breastmilk

> allergic to

> > milk, wheat, oats, corn, peanuts, cashews, sugars, soy, eggs

>

> I'm just curious, what did you feed Kiyanna before she was able to

> eat solids? What a challenge! No breastmilk, soy or dairy!!

Actually she is allergic to those foods *through* my breastmilk - so she

still nurses, but I have to avoid all her allergy foods as well as my own.

So she was 100% breastfed until about 7 months old, then we started adding

solids. And I can eat dairy, but she cannot have *any* dairy directly.

>

> Thanks for the note and encouragement, Kirsten!

You are welcome.

> Can you ... or anyone else here ... tell me about your experiences

> with meat/protein intake? Just here in the first couple of days, it

> seems like my protein intake will have to increase quite a bit to

> compensate for the reduction in carbohydrates. I'm worried about my

> body's reaction to more protein all of a sudden. Any advice?

I just recently saw an article about the protein increase:

High Protein Diets: Separating Fact From Fiction

By Byrnes, PhD, RNCP

from http://www.powerhealth.net/protein2001.htm

It is a *very* helpful article dealing with high protein diets.

Kirsten

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When you need to go to sleep it is to make more hormones. You can order

your meds direct from Nutri-meds. 2 naturalthyroid bovine and 2

naturaladrenal glandular work really well. But you must always suplement

calcium as any thyroid supplement stops the parathyroids from working

properly.

New to the group

I'm new to the group so I'm likely asking stuff that's already been

asked/discussed. Forgive me for going over old stuff again.

I am VERY frustrated since I cannot get any doctors to diagnose me as

hypo. I am taking a product called T100X as a suppliment and have

been taking it for a year. It has made a vast improvement in my

health since I started. I have seen a specialist before I started

with this hormone suppliment and he said that I was borderline, but

wouldn't treat me because I was only borderline. I live in Canada,

so I'm rather limited with meds and doctor options.

The question that I have is really related to fatigue. I am tired,

bone tired all the time. Does anyone have a suggestion about what I

can do to relieve this constant tiredness? I'm desperate! If I put

my head down for 60 seconds, I'm asleep. It's hard at work. My

concentration is affected. It is wrecking everything and I need to

get some kind of relief. Somebody must have some sort of answer.

Any suggestion would be worth a try.

Email me at bgmcansh@... Thanks.

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  • 4 weeks later...
Guest guest

One of my doctors put me on a high doseage of Armour. He more or less let me

lower it on my own as needed. I liked him, but my insurance doesn't cover him

anymore. So, I've been to various doctors. Next week I've got an appointment

with a new doctor. This will be my 4th doctor in the last 2 years. I hope I

like him. I'm really getting tired of going from doctor to doctor. But...my

suggestion to you.....if you don't like your doctor, try another one.

Hopefully, there's one out there that you'll like.

Good Luck,

New to the group

Hi My name is Belinda, and I was just told by my doctor that I have

hypothyroidism. I have gained alot of weight, and I have such dry

hair. I have problems falling asleep, but I am tired all the time.

Does someone have some advice for me? I don't like my doctor and from

what research I have done think she is not going about this right.

She put me on Synthroid .1 . Do people normally start out on such a

high dosage?

Thanks in advance Belinda

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Thanks . I have noticed what little I have been on here (just

joined couple of days ago) that Synthyroid is not meantioned as to

what people are taking. Is synthyroid a good medicine to take for

hypo, or is this other medicine you guys are discussing better? Sorry

if this is a stupid question :)

Belinda

> One of my doctors put me on a high doseage of Armour. He more or

less let me lower it on my own as needed. I liked him, but my

insurance doesn't cover him anymore. So, I've been to various

doctors. Next week I've got an appointment with a new doctor. This

will be my 4th doctor in the last 2 years. I hope I like him. I'm

really getting tired of going from doctor to doctor. But...my

suggestion to you.....if you don't like your doctor, try another

one. Hopefully, there's one out there that you'll like.

>

> Good Luck,

> New to the group

>

>

> Hi My name is Belinda, and I was just told by my doctor that I

have

> hypothyroidism. I have gained alot of weight, and I have such dry

> hair. I have problems falling asleep, but I am tired all the

time.

> Does someone have some advice for me? I don't like my doctor and

from

> what research I have done think she is not going about this

right.

> She put me on Synthroid .1 . Do people normally start out on such

a

> high dosage?

> Thanks in advance Belinda

>

>

>

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Thanks . I have noticed what little I have been on here (just

joined couple of days ago) that Synthyroid is not meantioned as to

what people are taking. Is synthyroid a good medicine to take for

hypo, or is this other medicine you guys are discussing better? Sorry

if this is a stupid question :)

Belinda

Belinda, there are no stupid questions here :) We were all in the same

boat when we were first diagnosed with Hypo. A good place to have lots of your

questions answered is Shomans's Thyroid site at:

http://thyroid.about.com/cs/hypothyroidism/index that's where I got started

several years ago. Synthroid is a medicaine that contains only the T-4 thyroid

hormone. I for one cannot process the T-4 alone. I do much better on a T-3/T-4

combonation. I take Thyrolar, which is a non allergic version of Armour. As all

our systems are different, all of our medications are different. The best one

for you is the one that works! Some do great on Synthroid right from the

beginning. I continued to feel like I was being slowly strangled to death, and

the Synthroid alone was not alleving the nodule on my thyroid gland. So I asked

for Armour and got it. I am one of the lucky ones. Since then I have tried all

sorts of combinations, including a slow release T-3 only. there was a question

of 's syndrome. I found T-3 alone to not be the right way to go for me

either, as T-4 alone wasn't working. So for me, for now, I am on Thyrolar 3,

once a day. I hope this hasn't confused you more ;) love in Ca.

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Hi . another question if I may pelase.

I am on just T4 but I am still gettting all the symptoms of Hypo crams etc. All

my blood tests are fine but I spoke with a DR here in the UK and he said I may

need to take t3!! When I take armour it goes away but I seem not to be able to

take too much armour as my heart goes too fast.

My question is if you blood test are fine adding T3 will this benifet.

Many thanks

john C UK

> Re: Re: New to the group

>

>

>

>

>

> Thanks . I have noticed what little I have been on here (just

> joined couple of days ago) that Synthyroid is not meantioned as to

> what people are taking. Is synthyroid a good medicine to take for

> hypo, or is this other medicine you guys are discussing better? Sorry

> if this is a stupid question :)

> Belinda

>

> Belinda, there are no stupid questions here :) We were all in the same

boat when we were first diagnosed with Hypo. A good place to have lots of your

questions answered is Shomans's Thyroid site at:

<http://thyroid.about.com/cs/hypothyroidism/index> that's where I got started

several

> years ago. Synthroid is a medicaine that contains only the T-4 thyroid

hormone. I for one cannot process the T-4 alone. I do much better on a T-3/T-4

combonation. I take Thyrolar, which is a non allergic version of Armour. As all

our systems are different, all of our medications are different.

> The best one for you is the one that works! Some do great on Synthroid right

from the beginning. I continued to feel like I was being slowly strangled to

death, and the Synthroid alone was not alleving the nodule on my thyroid gland.

So I asked for Armour and got it. I am one of the lucky ones.

> Since then I have tried all sorts of combinations, including a slow release

T-3 only. there was a question of 's syndrome. I found T-3 alone to not

be the right way to go for me either, as T-4 alone wasn't working. So for me,

for now, I am on Thyrolar 3, once a day. I hope this hasn't

> confused you more ;) love in Ca.

>

>

>

>

>

>

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Hi . another question if I may pelase.

I am on just T4 but I am still gettting all the symptoms of Hypo crams etc.

All my blood tests are fine but I spoke with a DR here in the UK and he said I

may need to take t3!! When I take armour it goes away but I seem not to be able

to take too much armour as my heart goes too fast.

My question is if you blood test are fine adding T3 will this benifet.

Many thanks

john C UK

Your doctor may be right. And yes, you have to gradually increase the dosage a

little at a time. Be sure and work with your doctor on this. T-3 is powerful,

yet short acting. T-4 is less powerful and lasts a long time. The rapid

heartbeat is in response to the short powerful burst of T-3. I don't know about

the UK, do you have any compounding pharmacies that your doctor works with? You

may be one of the patients that needs to take a separate T-4 and separate T-3.

If you can find a compounding pharmacy that can make a sustained release (slow

release) T-3 in your dosage amount, that may take care of the rapid heartbeat

and the discomfort that brings. Hugs,

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Belinda,

Each person is different. So...I'm not sure which would be best for you. Just

try to find a doctor you like & discuss it with him. You can also do research

on the internet. I noticed that someone gave you a link to look at. I've heard

lots of good things from people that are on Synthroid as well as Armour. I'm on

Armour. My sister is on Synthroid. I think one reason my sister likes the

Synthroid is because she's a vegetarian. Synthroid is synthetic, whereas Armour

is from animals (pig). So, that would be an issue if you were a vegetarian.

Don't worry about asking any question you like. There are no stupid questions.

New to the group

>

>

> Hi My name is Belinda, and I was just told by my doctor that I

have

> hypothyroidism. I have gained alot of weight, and I have such dry

> hair. I have problems falling asleep, but I am tired all the

time.

> Does someone have some advice for me? I don't like my doctor and

from

> what research I have done think she is not going about this

right.

> She put me on Synthroid .1 . Do people normally start out on such

a

> high dosage?

> Thanks in advance Belinda

>

>

>

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Guest guest

Ok here is another question for you guys....I am not sure what my

level was that let the doctor know I had hypo, but I went to another

doctor when I started having a rapid heartbeat and a " hard "

heartbeat. The second doctor did blood work and said that my level

was .0005 and that my medicine was too high and that was what was

causing the rapid hard heartbeat. I was/am totally confused as he

said the reading should be between 1-3. I was thinking cool .0005 it

is not high at all but I am guessing that higher is better?? I also

have borderline high cholesterol and very high tri levels, which has

not dropped even though I am on Zocor. My cholesterol levels are now

low 116 but the tri levels are still high 200+. The second doctor

said that (well he is really a PA) the thyroid was making the

cholesterol levels high. My first doctor said that I needed to stay

on the high dosage of synthyroid. I don't have a period but all the

doctors want to do is put me on birth control pills, which I don't

want to do. I am hoping that being on the right medicine and right

dosage will make my period come back (I just turned 30). I appreciate

any help. I am going to do some looking online (starting at the link

I was given) to find out more about my disease. I am also interested

in any natural cures I can find. I am very scard to take all types of

medicine. ;) I hate to admit I am very dumb about my disease.

Belinda

> > One of my doctors put me on a high doseage of Armour. He more

or

> less let me lower it on my own as needed. I liked him, but my

> insurance doesn't cover him anymore. So, I've been to various

> doctors. Next week I've got an appointment with a new doctor.

This

> will be my 4th doctor in the last 2 years. I hope I like him.

I'm

> really getting tired of going from doctor to doctor. But...my

> suggestion to you.....if you don't like your doctor, try another

> one. Hopefully, there's one out there that you'll like.

> >

> > Good Luck,

> > New to the group

> >

> >

> > Hi My name is Belinda, and I was just told by my doctor that

I

> have

> > hypothyroidism. I have gained alot of weight, and I have such

dry

> > hair. I have problems falling asleep, but I am tired all the

> time.

> > Does someone have some advice for me? I don't like my doctor

and

> from

> > what research I have done think she is not going about this

> right.

> > She put me on Synthroid .1 . Do people normally start out on

such

> a

> > high dosage?

> > Thanks in advance Belinda

> >

> >

> >

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Guest guest

Hello again Belinda, Wow girl! You went way hyper with that first dr!

First of all, .0005 is waaaaaay less than 1 and puts you in the

hyperthyroid arena. Like your dr said, you want to be between 1 and 3

(although most experts agree women feel best between 1 and 2) so

obviously your meds need to be taken down a bit. Perfectly normal to

have a med adjust when you're first diagnosed. Also, the fact that

your dr doesn't want to just keep you at " the lab ranges " of 5+, is a

good sign! Obviously he has an understanding that lab numbers aren't

everything.

He's also right about the cholesterol- that number is almost always

lowered once you find the right thyroid rx.

As for your period- I've been trying to conceive for a few years now

and I have an incredibly irregular cycle. Going on birth control

pills only make me a little more regular but once I go off of them,

I'm back to all the madness in that area so I don't see it as a

long-term solution. For that reason, I agree with your choice not to

go on bc (or anything else for that matter) just yet.

The hardest part about this whole thing is finding the right dr. Once

you find a dr that is more concerned with " how you feel " rather than

your lab reports, you'll have a much easier time.

The second hardest thing about this is finding the right medication

and the right dosage. If you don't start feeling better using

Synthroid, even if the numbers are correct, you may want to ask your

dr about switching to a medication that has both T3 and T4.

Good luck!

Jeni

> > > One of my doctors put me on a high doseage of Armour. He more

> or

> > less let me lower it on my own as needed. I liked him, but my

> > insurance doesn't cover him anymore. So, I've been to various

> > doctors. Next week I've got an appointment with a new doctor.

> This

> > will be my 4th doctor in the last 2 years. I hope I like him.

> I'm

> > really getting tired of going from doctor to doctor. But...my

> > suggestion to you.....if you don't like your doctor, try another

> > one. Hopefully, there's one out there that you'll like.

> > >

> > > Good Luck,

> > > New to the group

> > >

> > >

> > > Hi My name is Belinda, and I was just told by my doctor that

> I

> > have

> > > hypothyroidism. I have gained alot of weight, and I have such

> dry

> > > hair. I have problems falling asleep, but I am tired all the

> > time.

> > > Does someone have some advice for me? I don't like my doctor

> and

> > from

> > > what research I have done think she is not going about this

> > right.

> > > She put me on Synthroid .1 . Do people normally start out on

> such

> > a

> > > high dosage?

> > > Thanks in advance Belinda

> > >

> > >

> > >

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Guest guest

Belinda,

I don't think your question is stupid. There are many different

possible causes for hypothyroidism. There are also those who have a

problem converting the T4 hormone (either in medication or produced

by their own thyroid) to the T3 hormone that the cells need to

produce energy. This problem (thyroid resistance) can occur either

along with thyroid gland dysfunction or by itself. So different

people needs different medication depending on exactly what is going

on with their metabolism. In general, someone with a low- or non-

functioning thyroid gland only will do just fine on a medication like

Synthroid (which contains only the T4 hormone). If a person has the

thyroid conversion problem, though, then they will need a medication

containing either just T3 or a combination of T4 and T3.

Best wishes,

Celeste

(who does just fine taking only T4)

Belinda wrote:

> I have noticed what little I have been on here (just

> joined couple of days ago) that Synthyroid is not meantioned as to

> what people are taking. Is synthyroid a good medicine to take for

> hypo, or is this other medicine you guys are discussing better?

Sorry

> if this is a stupid question :)

>

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Guest guest

Belinda,

Way back (about 20 years ago or so) when I was first diagnosed as

hypothyroid I was not having periods either. Depending on how long a

person has been having low thyroid function without treatment, there

can be a whole host of other hormonal imbalances going on. You might

need to get some progesterone and/or estrogen on a regular basis to

get your periods going again. The doctor I was seeing gave me monthly

injections either of natural progesterone and estrogen or of just

progesterone. Once I got my cycle re-established I discontinued the

injections and have not had a problem with amenorrhea since then. I

don't recommend birth control pills, Depo Provera, or any other form

of synthetic progesterone (progestin), though, because that can just

make an existing imbalance worse. Ask your doctor to give you some

form of natural progesterone either as an injection or as a cream

that can be absorbed through the skin.

Best wishes,

Celeste

Belinda wrote:

> The second doctor

> said that (well he is really a PA) the thyroid was making the

> cholesterol levels high. My first doctor said that I needed to stay

> on the high dosage of synthyroid. I don't have a period but all the

> doctors want to do is put me on birth control pills, which I don't

> want to do. I am hoping that being on the right medicine and right

> dosage will make my period come back (I just turned 30). I

appreciate

> any help.

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