Re: New here

[Guest guest]

Hi ,

You sound like your having a hard time. Your ab's are very high.

What are your Free T3/T4 numbers? 1 gr of Armour is equivalent to

100 mcg of synthetic T4. Do you feel better on the Armour compared

to the T4 alone?

First, I don't have any faith in the 24-hour urine cortisol test. It

only gives a total number, not what is happening throughout the day.

Mine was high, however the morning blood cortisol was low. All the

Endo's did was blame it on a faulty lab. Later, a saliva essay

showed I am opposite of normal, extremely low morning, low noon, high

afternoon and extremely high night. Over the summer I have changed

my diet and my Thyroid and Adrenal deficiencies are getting better.

Your symptoms sound like Adrenal fatigue. DHEA increases, decreases

and then again increases in AF, I am currently being treated at stage

four as I hardly have any DHEA with low and high cortisol levels -my

DHEA is only 5 (70-415). In advanced stages is goes very high to

commentate for the inadequate cortisol production. Perhaps this link

will help explain it.

http://www.chronicfatigue.org/ASI%20Normal.html

(Note: to see the seven stages go to the bottom of the page.)

You sound like you may have low cortisol, but the dr is testing for

high. What are your cortisol numbers?

Normally Dr's, including Endo's will only treat it when it has become

so extreme like Cushing's (high) or 's (low). Also, don't

expect much from an Endo, as they normally treat by lab numbers

alone. Your dr has already ruled out an Adrenal tumor, which can be

the cause of Cushing's, also a pituitary tumor. Since, the 24-hour

urine is ordered for Cushing's, however, the overnight dexamethasone

suppression test is a better indicator, you take a dose of

dexamethasone to see how it affects the level of cortisol in the

blood, if it is high Cushing's is a real possibility.

However, generally in Cushing's the DHEA is low.

Typically with low cortisol levels ACTH and ACTH stim tests are

ordered. Do you have any Cushing symptoms, like round and puffy

face, neck and truck; heavy mid section with thin arms and legs;

weight gain; lump on the upper back or neck; purple stretch marks;

sleep issues; muscle, joint and bone weakness; and irregular periods

etc.

HTH, BJ

>

> Hello to Everyone. I am new to this group but not new to Thyroid

issues. Have been treated for hypo for years and I would say for the

last year and half I have felt horrible. I didn't know it was my

thyroid issues that was the problem. I just thought because the

doctors told me my test were fine that it was not my thyroid until I

got fed up and started searching for answers.

> Anyway in June I went to my doctor and said do test that things

were not right. My main problems were racing heart and anxiety. I

also was tired, no energy, all the usual stuff from hypo. On my labs

the TPO was 2738. Also my DHEA was 538 (69-414). They sent me for

heart test, stress and so forth and all those came back normal. They

did a CT of my adrenal glands and they came back normal. My doctor

finally said I needed to go to an Endo doctor.

> I had my 1st appointment with the Endo. Now she wants 24 hour urine

test and more labs. She also said my thyroid was enlarged and is

sending me for a ultra sound of the thyroid gland.

> I was taking Levothroxine 100mg. My doctor changed me by request

from me to Armour 6 weeks ago. I am only taking 1 grain.

> So I sit here feeling terrible waiting for all these test to come

back so they can decide what is in the cards for me as far as

treatment.

> My question is my DHEA. Anyone have an idea's why my DHEA would be

high? My regular doctor acted stumped and that is why she sent me on

to an Endo. I have never taken any DHEA supplements. Mostly what I

read are people trying to raise there DHEA. Any ideas anyone??

>

> Thanks

>

[Guest guest]

Re: New Here

Hi ,You sound like your having a hard time. Your ab's are very high. What are your Free T3/T4 numbers? 1 gr of Armour is equivalent to 100 mcg of synthetic T4. Do you feel better on the Armour compared to the T4 alone?

Yes I am having a very hard time. Yes my ab's are high and all these years I have had thyroid problems this was the 1st time this test was ran and it was I who requested it to get some answers. It was like pulling teeth to get what I did have ran as far as test from my GP doctor. Anyway I finally found out for sure that I have hashi. Not that I like the idea but at least it can shed some light on why I feel so bad and whats going on.

No I did not get any of the Free test done. I asked for it but when the labs came back they were not the frees. My TSH was 3.087 (0.350-05.500)----Thyroxine (T4) 11.4 (4.5-12.0)---T3 Uptake 29 (24-39)--Free Thyroxine Index 3.3 (1.2-4.9).

Yes I do feel some what better on Armour. The heart plaps and anxity have calmed down. I do have more hypo issues on the Armour than I did on the synthetic. I know I need a increase but this new Endo told me not to do anything different till I had labs from her which were today. So I am going to try to increase tomorrow and see what happens. First, I don't have any faith in the 24-hour urine cortisol test. It only gives a total number, not what is happening throughout the day. Mine was high, however the morning blood cortisol was low. All the Endo's did was blame it on a faulty lab. Later, a saliva essay showed I am opposite of normal, extremely low morning, low noon, high afternoon and extremely high night. Over the summer I have changed my diet and my Thyroid and Adrenal deficiencies are getting better.

I have nothing else to go on right now but the 24 hour urine test. I just turned my urine in this morning so I will have to wait to see just what it says. I do belevie that I am doing like you and have extremely low morning, low noon, high afternoon with extremely high night. I am dead tired all day and I finally come alive in late afternoon and then at night I cant sleep. Your symptoms sound like Adrenal fatigue. DHEA increases, decreases and then again increases in AF, I am currently being treated at stage four as I hardly have any DHEA with low and high cortisol levels -my DHEA is only 5 (70-415). In advanced stages is goes very high to commentate for the inadequate cortisol production. Perhaps this link will help explain it.http://www.chronicfatigue.org/ASI%20Normal.html(Note: to see the seven stages go to the bottom of the page.)You sound like you may have low cortisol, but the dr is testing for high. What are your cortisol numbers?

On my last lab work in June my cortisol was 7.6 (3.1-22.4). Course my reg. GP doctor said they were fine because they were in range. Just what is a good range to shoot far with a blood Cortisol lab?Normally Dr's, including Endo's will only treat it when it has become so extreme like Cushing's (high) or 's (low). Also, don't expect much from an Endo, as they normally treat by lab numbers alone. Your dr has already ruled out an Adrenal tumor, which can be the cause of Cushing's, also a pituitary tumor. Since, the 24-hour urine is ordered for Cushing's, however, the overnight dexamethasone suppression test is a better indicator, you take a dose of dexamethasone to see how it affects the level of cortisol in the blood, if it is high Cushing's is a real possibility.However, generally in Cushing's the DHEA is low.Typically with low cortisol levels ACTH and ACTH stim tests are ordered. Do you have any Cushing symptoms, like round and puffy face, neck and truck; heavy mid section with thin arms and legs; weight gain; lump on the upper back or neck; purple stretch marks; sleep issues; muscle, joint and bone weakness; and irregular periods etc.

I know this Endo has ordered up some extra test but not sure what all she ordered. I do think ACTH test was ordered. I really wont know what all was done until I have the lab results in my hand so I can read them. I will never again take their word for it. As far as symptoms I cant tell if I am puffy or just fat!! I have been this way for so long I dont know what is normal for me. I do have major sleep issues, joint and muscle weakness and my peroids have flew the coop about 2 years ago. But before they left I had major irregular periods for about 3 years before.

..HTH, BJ

..

[Guest guest]

This is *exactly* how I feel. I am on 75mcg compounded T3 2X daily and still going up, as my Free T3 is still 330 with a top of the range at 430. I have had a saliva test a couple of years ago and it showed just like you said, very low in the AM, then rising all day until high at night, which is when I am wide awake and can't go to bed before midnight. Like you said though, over the 24 hour period it said "normal", as the four different readings gave me a total reading the was in range.

So I have started an AM dose of 10mg Hydrocortosone and am thinking of kicking it up to 20mg because I am still out it in the AM. I also take DHEA.

But what will correct this imbalance in cortisol? I know the HC in the AM will help, but what will cause the high cortisol in the evening to go down?

First, I don't have any faith in the 24-hour urine cortisol test. It only gives a total number, not what is happening throughout the day. Mine was high, however the morning blood cortisol was low. All the Endo's did was blame it on a faulty lab. Later, a saliva essay showed I am opposite of normal, extremely low morning, low noon, high afternoon and extremely high night. Over the summer I have changed my diet and my Thyroid and Adrenal deficiencies are getting better.

I have nothing else to go on right now but the 24 hour urine test. I just turned my urine in this morning so I will have to wait to see just what it says. I do belevie that I am doing like you and have extremely low morning, low noon, high afternoon with extremely high night. I am dead tired all day and I finally come alive in late afternoon and then at night I cant sleep.

..

[Guest guest]

Hi Alisa,

Welcome! Our family is also military. I know it's not just military

doctors, it's the majority of doctors who are unwilling to listen and

treat accordingly.

To get you started off, I recommend you go to the

www.thyroid.about.com site and read up on the Thyroid 101 basics

there. You will get a good feel for what Hashimoto's Thyroiditis is.

You can also read about Goitrogens (foods and substances that can

contribute to the development of a goiter...Soy in the diet is a BIG

offender!). The thyroid gland is a Master Gland. It answers only to

the Pituitary and the Hypothalamus in the brain...the thyroid, in

turn, regulates the release of just about every hormonal system in

the human body. Think of it as the engine in your car. Without it

you can't " go " . That is why people, especially people who have had a

total (or even a partial) Thyroidectomy, must take replacement

hormone for the rest of our lives. And those of us with Thyroiditis

who still have our glands are pretty much doomed to the same protocol.

If you have any labs besides TSH, such as Free T3 (FT3) and Free T4

(FT4) posting them would be helpful. If your doc has not been testing

the Frees, then this is a must (and a must at every appointment).

Have all your antibodies been tested? You need to get copies of your

labs at every doctor visit and put them in a folder so you'll have

them to take to any specialist appt. etc.

Levoxyl, as you may already know, is a T4 only medication. Some

patients do well on T4 only for years, and then - poof – things

change. Some people do very well on synthetic T3 (Cytomel) and T4

therapy. Still others do well on Armour only, and some do well on a

combo Armour + synthetic T4 protocol. I am on the Armour only

protocol.

Here are a few things to be aware of and are often found low in Hashi

patients. Ferritin which is storage iron needs to be optimal at 50-

120 so the thyroid meds can get into the cells properly. Vitamin B-

12 needs to be optimal so that the digestive system absorbs nutrients

well. Also low Vitamin D level will also cause fatigue and many

other problems, too -A huge one is hair loss. See the thread on –

more on vitamin D – to better understand Vit D importance.

Besides soy, us Hashis need to stay clear of fluoride, triclosan (a

toxin in anti-bacterial products), artificial sweeteners and probably

a couple other things that slip at this moment.

Very important on my journey to get healthy - gluten intolerance-

which happens often in Hashi folks, so diet is utmost important. I

have it and gained 40 in a two month period. The only thing that

helped me lose weight was to remove gluten (wheat), soy, dairy

completely from my diet along with all the processed foods. It is

extremely challenging to say the least. I was at rock bottom and knew

I had to make the changes in order to survive.

Finally, many Hashis have unexplained rashes and such -like you. A

rare example, a friend had hives as a child and the only thing that

got rid of them was low dose T4. If she misses a dose they come

ravishing back. How weird! It comes with the territory, many Hashi

people are sensitive to all sorts of things. Perhaps with the

Levoxyl the need for the steriods will go away. Hashis or not,

steriods for anything other than a brief period of time is not

recommended.

One last note, I have heard many stories that untreated Hashi can

cause panic attacks that disappear with proper treatment.

HTH,

Bj

>

> Hi I just wanted to quickly introduce myself here because I'll

> probably be lurking and posting a lot.

>

> I haven't been feeling good for so long now, and trying to lose

weight

> has been so frustrating for so long despite pushing myself to do

> high-intensity cardio kickboxing an hour a day and watching what I

> ate.... even on a very low carb, lower fat diet the weight hardly

> budges. And I have been having horrible problems with heel pains

and

> wrist pains, etc. My blood pressure was also causing some issues,

> even though I was on meds. Just all kinds of little things. But

> nothing was turning up when I went to military doctors. I started

> using my company's insurance instead and have just begun seeing

> specialists. Last week my bloodwork showed Hashimoto's and

> hypothyroidism. I'm in a whirlwind of doctor's visits, lab visits,

> and reading right now. And I have an appt with a new

endocrinologist

> already (because I do not like the one I have-- he must go!). The

new

> doctor served as medical editor for some of Shoman's books,

which

> I've been reading, so I'm very anxious to see her in mid-October.

>

> Questions so far:

>

> I started levoxyl two days ago, because I do feel like I should do

> SOMETHING in the meantime since this appt isn't until October, and

> already can see hair falling out floating around me just walking! I

> hope this is only a temporary thing? Thyroid problems run in my

> family and so does a tendency to lose hair over every little

thing. I

> seem to have inherited both.

>

> I'm on prednisone for hives that will not stay away right now as

well.

> I cannot find any information on what effect taking steroids have on

> hashimotos or the thyroid. Can anyone help?

>

[Guest guest]

Sharon,

I am 45 and a mother of one child who is 9 plus I have had Hashimotos

for 14 years. I watch her like a hawk because all 3 of my sisters

have Hashi's and I am afraid it is a matter of time for her. I am so

sorry for all of the trouble Amber has gone through but you are in the

right place. I usually lurk and post only when a subject stirs me

emotionally. I have to say that after reading what people wrote in

response to your post that you are getting excellent advise. I think

Amber may have 's Disease and if you read about that and get

the proper testing you can rule it out or discover what is wrong.

With the salt cravings and her weight I would suspect that as a real

possibility. If she does have 's it is treatable and her life

will get much better.

With that said...I had all the symptoms of 's except the

tanning. I finally got the proper testing that showed my adrenal

glands worked fine. I still have the salt cravings and eat an

enormous amount of salt ever day even though I don't have 's.

I have low blood pressure (which is also a typical sign of 's)

so the salt isn't a problem for me. I take Sea Salt which still has

all the good minerals in it and it isn't bleached. Regular table salt

will help but it is bleached and all of the good minerals are leached

out. You can find it at health food stores and it is usually grey in

color and sticky plus chunky. Try giving Amber 1/4 tsp in water a few

times a day and see if that helps when she " spaces out " or has

cravings. It helps me so much. I take about a tablespoon of the

stuff a day and if it is hot I take even more. My husband marvels

because he says any normal person who consumed this much salt would

die. Guess I am not normal.

The standard test for 's Disease is an ACTH stim test. There

is a great website and Yahoo group you may want to check out on the

disease. It is

http://mysite.wanadoo-members.co.uk/addisons_network/index.html

These are great people and they can help. They will steer you in the

right direction and educate you for the proper testing. When I

finally got my testing I had to educate my doctor and the hospital

staff. They had never even heard of this testing. By the way,

President Kennedy had 's Disease. So if Amber does have it she

can be president!

I started having the foot problems and the wrist pain and now I have

all over joint pain on a regular, daily basis. The only symptom you

mentioned that I haven't had at one time or another is the head

swelling. I have had everything checked out and all is well except I

cannot find the proper dosage to replace my thyroid. I possibly have a

pituitary gland that isn't working properly. Just when my thyroid

gets stabilized I go hyper or hypo. It is a frustrating disease and I

can only imagine how it must be for a teenager. She will need to

learn what works for her and education is vital. Learn as much about

this disease as possible. I think the longer you have it and the

longer you take replacement hormones the more likely things change.

Life changes like menopause, pregnancy, puberty, etc can change the

need of the body and if you are not on top of it, things can go

haywire fast. The symptoms can be overwhelming and all encompassing

of the entire body.

Hope that helps and the advise you have gotten so far is excellent.

Have you had her Free T3 and Free T4 checked as well as her TSH? It

does sound like she is still hypo. The Free's are more important than

the TSH but you will get conflicting opinions about that. There are

also strong opinions about Synthroid vs Armour but I have taken both

and they are both pretty good choices. Armour people usually have

very strong opinions about their medication and maybe Amber should try

it and see if that helps. Sometimes when you have had Hashi's for a

while your body isn't able to convert the T4 into the much needed T3

as well and Armour can really help that. You can learn about Armour

on the web as well. That could be why she can't remember things.

That is one of the most common symptoms and very frustrating. I have

lots of memory trouble but my family has adapted and knows what to expect.

Good luck and tell Amber that she shouldn't give up. Lots of us are

out there and willing to help and share our experiences.

a

>

> Hello to all,

>

> I am a mother of a girl who has had Hastimoto's since 7 years old.

She is now 14 years old

> now. Wow I am so happy to finally have found a place that Amber and

I can talk with

> others who have this disease.

>

> Amber has been sick pretty much sick since birth. with starting at

27 weeks of pregnancy

> me going into premature birth with her. I was able to keep her in

until 35 weeks by staying

> in the hospital and us both having to take really bad medicine but I

did have her and she

> was healthy at the time of birth with a few problems. Her Heart is

on the wrong side and

> she had 2 of her main values open. Which closed on there own after

she was 1 year old.

>

> Her dad is the one who found her Hastimoto's around 7years old she

had a goiter grow

> out of her neck and we didn't know what it was so we took her to the

doctor and he ran

> test on her the autoimmune came back 70.0 and thyroid TSH was 11.6

at the time. But I

> have to tell you all that we had Amber check for lots of things

before us finding the goiter.

> Like her Heart which was on the wrong side and she always felt it

beating to fast nothing

> wrong with it we were told. She has tissue swelling on her head and

we were told they

> have never seen this before lets take a watch and wait attitude. We

got 3 different doctors

> and they all said the same things were talking Departments of

otolarngology doctors as

> well as Dermatolgoy groups as well as the brain doctors and then she

couldn't go poop

> anymore which was not fun for us all. and they could only find mild

inflammation in the

> stomach but no were else. Still didn't know what to tell us. As for

her hair she was losing

> her hair as well. She would always tell me and this sad so sorry if

i make you all cry. She

> doesn't want to be here on earth anymore I want to go home with my

other father he

> misses me but he tells me I have to stay here and help you and daddy

an mommy I am not

> finish here on earth. There were times she would space out on me. I

didn't know what to

> do. She was in the middle of 2nd grade when she got really bad sick.

She couldn't

> remember anything she was taught. She went from top of her class

down to failing school.

> I remember the teacher being upset with Amber telling me she isn't

paying attention in

> class and I just didn't know what to do to help her. Then we found

out what was wrong. I

> remember her falling asleep in her plate at dinner time. I would

have to go and clean her

> up and put her to bed. That's why we wanted them to check her heart

and they never

> could find anything wrong.

>

> At 14 years old Amber still has problems she is on 100 mcg of

Levoxyl. Were going in to

> have more test done. Because she has started her period but she has

problems with it

> now. Her Sodium level is always low as well as her red blood cells.

We don't know as of yet

> what is happening to her. She has to eat almost every 30 to 60

minutes or she gets really

> weird on me. I was hoping that maybe one of you have this happening

to you to. Amber is

> always wanting to eat salt. She can't get enough. I make homemade

soup which I feel is

> salty enough and she will pour it on and then eat it. she eats

really healthy because I have

> crohns disease so I cook almost all the food that my family and I

eat. But Amber does not

> have the weight problem as a matter of fact she is under weight she

can still fit in size 12

> pants. Or Double O pants. She does have a little figure now with

breast but she's really

> tiny. She hates this but I know that others have problems with there

weight so I tell her not

> to let this bother her. Do any of you have the weight like her. She

does see a really good

> doctor and I like him. But Amber has so many other things happening

to her like her feet

> she has to have surgury on them because she needs inplants I don't

almost believe them

> when they tell me it's not relayed to the thyroid issue. Every day

Amber gets up she

> doesn't want to go to school but I have to make her go. The schools

have been helpful

> because of the disease she can get a 504 and they have to give her

the extra help with her

> getting the work done. She is a staight A student but I know it's

because she try's really

> hard.

>

> I am looking forward to Amber talking with you all also and I am

looking forward to giving

> advice to anyone of you that I can with being a caregiver of someone

with this disease. I

> have learned so much because Amber's Dad works for the University

of California,

> so I can have any information at anytime that's needed. I am a Home

Mom our choice after

> Amber was born and with all the medical issues she has.

>

> Thanks for your reading my long letter and your comments back,

>

> Sharon

>

[Guest guest]

Hi Paua,

Wow, thanks for your information and help. I would keep a very close eye on your

daugther one good thing is you know what to look for. I pray that she will not

get this

disease also. Thyroid disease does run in the family so maybe you will be lucky

and it will

pass her by. After reading all the repost I also feel that were in the right

place. I think

maybe Amber has 's Disease it sounds so much like what she is doing right

now.

We had a Ultra sound of the Thyroid and they told me then she has lots of cells

to many

but no one said anything about it yet to me. I am still trying to understand why

they don't

take out her thyroid because it's been dead since she was 7 years old. I

question him but

he says no we do not take it out unless it has cancer in it. So what they wait

for is the

gland to get cancer that doesn't make since to me.

Amber loves Sea Salt I use it all the time and she will still add the salt on

her food. We just

laugh at her. Her blood pressure is very low as well as her temperature

sometimes I feel

like the doctor feels so doing ok because my husband and I take such great care

of her. He

has told us that she's in the best shape out of all his children he see's. But

my husband

and I are always helping her deal with how she feels. Tired, hungry, sickly all

the time.

I will have Amber try the salt in the water after her test and see if it helps

her. I like what

your husband said because we feel the same about Amber. I have to tell you my

husband

had stage 4 Testicle cancer with the rare cancer cell he is now the only person

to of lived

past 5 years. I conceived Amber after his Chemo and we were told he could not

have

children. She is the first child born after chemo in a male with this kind of

cancer too. Of

course they won't say any of her problems are from that. We were very lucky to

have a 2nd

child a boy who is now 11 years old and at this point he is healthy.

I think that maybe you sound like your pituitary gland that isn't working

properly. Or could

it be that this is what happens to you because of Hastimoto's. Because I can't

remember a

time when Amber has felt right at all. Only when she was little before 7 she was

so

different. happy little girl having fun with her friends and school was great

for her. She is

still happy but it's not the same. As far as school it's really hard for her she

does get A's

but she works really hard to get them. Sometimes she will need extra help or she

has lots

of questions and then she will not remember what the teachers taught her. Do you

have

this happen to you with remembering things in the day or any work problems. I

have not

meet many people that have kids that have this disease so far I only know Amber

but I

know there's more out there. I wonder if Amber will have problems having

children or any

problems with her uterus. You have a daughter did you have problems with your

thyroid

disease becoming worst or were you better? Well I better go and make some lunch

for the

kids. Thanks again for the information and I look forward to our chat's. I will

let you know

what the doctor has to say.

Thanks,

Sharon

-- In Thyroiditis , " sophieboris " wrote:

>

> Sharon,

> I am 45 and a mother of one child who is 9 plus I have had Hashimotos

> for 14 years. I watch her like a hawk because all 3 of my sisters

> have Hashi's and I am afraid it is a matter of time for her. I am so

> sorry for all of the trouble Amber has gone through but you are in the

> right place. I usually lurk and post only when a subject stirs me

> emotionally. I have to say that after reading what people wrote in

> response to your post that you are getting excellent advise. I think

> Amber may have 's Disease and if you read about that and get

> the proper testing you can rule it out or discover what is wrong.

> With the salt cravings and her weight I would suspect that as a real

> possibility. If she does have 's it is treatable and her life

> will get much better.

>

> With that said...I had all the symptoms of 's except the

> tanning. I finally got the proper testing that showed my adrenal

> glands worked fine. I still have the salt cravings and eat an

> enormous amount of salt ever day even though I don't have 's.

> I have low blood pressure (which is also a typical sign of 's)

> so the salt isn't a problem for me. I take Sea Salt which still has

> all the good minerals in it and it isn't bleached. Regular table salt

> will help but it is bleached and all of the good minerals are leached

> out. You can find it at health food stores and it is usually grey in

> color and sticky plus chunky. Try giving Amber 1/4 tsp in water a few

> times a day and see if that helps when she " spaces out " or has

> cravings. It helps me so much. I take about a tablespoon of the

> stuff a day and if it is hot I take even more. My husband marvels

> because he says any normal person who consumed this much salt would

> die. Guess I am not normal.

>

> The standard test for 's Disease is an ACTH stim test. There

> is a great website and Yahoo group you may want to check out on the

> disease. It is

> http://mysite.wanadoo-members.co.uk/addisons_network/index.html

> These are great people and they can help. They will steer you in the

> right direction and educate you for the proper testing. When I

> finally got my testing I had to educate my doctor and the hospital

> staff. They had never even heard of this testing. By the way,

> President Kennedy had 's Disease. So if Amber does have it she

> can be president!

>

> I started having the foot problems and the wrist pain and now I have

> all over joint pain on a regular, daily basis. The only symptom you

> mentioned that I haven't had at one time or another is the head

> swelling. I have had everything checked out and all is well except I

> cannot find the proper dosage to replace my thyroid. I possibly have a

> pituitary gland that isn't working properly. Just when my thyroid

> gets stabilized I go hyper or hypo. It is a frustrating disease and I

> can only imagine how it must be for a teenager. She will need to

> learn what works for her and education is vital. Learn as much about

> this disease as possible. I think the longer you have it and the

> longer you take replacement hormones the more likely things change.

> Life changes like menopause, pregnancy, puberty, etc can change the

> need of the body and if you are not on top of it, things can go

> haywire fast. The symptoms can be overwhelming and all encompassing

> of the entire body.

>

> Hope that helps and the advise you have gotten so far is excellent.

> Have you had her Free T3 and Free T4 checked as well as her TSH? It

> does sound like she is still hypo. The Free's are more important than

> the TSH but you will get conflicting opinions about that. There are

> also strong opinions about Synthroid vs Armour but I have taken both

> and they are both pretty good choices. Armour people usually have

> very strong opinions about their medication and maybe Amber should try

> it and see if that helps. Sometimes when you have had Hashi's for a

> while your body isn't able to convert the T4 into the much needed T3

> as well and Armour can really help that. You can learn about Armour

> on the web as well. That could be why she can't remember things.

> That is one of the most common symptoms and very frustrating. I have

> lots of memory trouble but my family has adapted and knows what to expect.

>

> Good luck and tell Amber that she shouldn't give up. Lots of us are

> out there and willing to help and share our experiences.

>

> a

>

>

> >

> > Hello to all,

> >

> > I am a mother of a girl who has had Hastimoto's since 7 years old.

> She is now 14 years old

> > now. Wow I am so happy to finally have found a place that Amber and

> I can talk with

> > others who have this disease.

> >

> > Amber has been sick pretty much sick since birth. with starting at

> 27 weeks of pregnancy

> > me going into premature birth with her. I was able to keep her in

> until 35 weeks by staying

> > in the hospital and us both having to take really bad medicine but I

> did have her and she

> > was healthy at the time of birth with a few problems. Her Heart is

> on the wrong side and

> > she had 2 of her main values open. Which closed on there own after

> she was 1 year old.

> >

> > Her dad is the one who found her Hastimoto's around 7years old she

> had a goiter grow

> > out of her neck and we didn't know what it was so we took her to the

> doctor and he ran

> > test on her the autoimmune came back 70.0 and thyroid TSH was 11.6

> at the time. But I

> > have to tell you all that we had Amber check for lots of things

> before us finding the goiter.

> > Like her Heart which was on the wrong side and she always felt it

> beating to fast nothing

> > wrong with it we were told. She has tissue swelling on her head and

> we were told they

> > have never seen this before lets take a watch and wait attitude. We

> got 3 different doctors

> > and they all said the same things were talking Departments of

> otolarngology doctors as

> > well as Dermatolgoy groups as well as the brain doctors and then she

> couldn't go poop

> > anymore which was not fun for us all. and they could only find mild

> inflammation in the

> > stomach but no were else. Still didn't know what to tell us. As for

> her hair she was losing

> > her hair as well. She would always tell me and this sad so sorry if

> i make you all cry. She

> > doesn't want to be here on earth anymore I want to go home with my

> other father he

> > misses me but he tells me I have to stay here and help you and daddy

> an mommy I am not

> > finish here on earth. There were times she would space out on me. I

> didn't know what to

> > do. She was in the middle of 2nd grade when she got really bad sick.

> She couldn't

> > remember anything she was taught. She went from top of her class

> down to failing school.

> > I remember the teacher being upset with Amber telling me she isn't

> paying attention in

> > class and I just didn't know what to do to help her. Then we found

> out what was wrong. I

> > remember her falling asleep in her plate at dinner time. I would

> have to go and clean her

> > up and put her to bed. That's why we wanted them to check her heart

> and they never

> > could find anything wrong.

> >

> > At 14 years old Amber still has problems she is on 100 mcg of

> Levoxyl. Were going in to

> > have more test done. Because she has started her period but she has

> problems with it

> > now. Her Sodium level is always low as well as her red blood cells.

> We don't know as of yet

> > what is happening to her. She has to eat almost every 30 to 60

> minutes or she gets really

> > weird on me. I was hoping that maybe one of you have this happening

> to you to. Amber is

> > always wanting to eat salt. She can't get enough. I make homemade

> soup which I feel is

> > salty enough and she will pour it on and then eat it. she eats

> really healthy because I have

> > crohns disease so I cook almost all the food that my family and I

> eat. But Amber does not

> > have the weight problem as a matter of fact she is under weight she

> can still fit in size 12

> > pants. Or Double O pants. She does have a little figure now with

> breast but she's really

> > tiny. She hates this but I know that others have problems with there

> weight so I tell her not

> > to let this bother her. Do any of you have the weight like her. She

> does see a really good

> > doctor and I like him. But Amber has so many other things happening

> to her like her feet

> > she has to have surgury on them because she needs inplants I don't

> almost believe them

> > when they tell me it's not relayed to the thyroid issue. Every day

> Amber gets up she

> > doesn't want to go to school but I have to make her go. The schools

> have been helpful

> > because of the disease she can get a 504 and they have to give her

> the extra help with her

> > getting the work done. She is a staight A student but I know it's

> because she try's really

> > hard.

> >

> > I am looking forward to Amber talking with you all also and I am

> looking forward to giving

> > advice to anyone of you that I can with being a caregiver of someone

> with this disease. I

> > have learned so much because Amber's Dad works for the University

> of California,

> > so I can have any information at anytime that's needed. I am a Home

> Mom our choice after

> > Amber was born and with all the medical issues she has.

> >

> > Thanks for your reading my long letter and your comments back,

> >

> > Sharon

> >

>

[Guest guest]

Hi Alisa,

I am Amber's mom. Hang in there. I hope your meeting with your new doctor works

out for

you. I think were both in the right place to get the help and answers we seek. I

know how

frustated you must be. Because I still feel frustated and Amber has been dealing

with this

disease for 7 years or so now she's only 14. I would check with your phamacist

about the

prednisone reactions with your Thyroid medicine because I know Amber can not

take this

medicine. As well as also watching what she eats. Like I had to take her off of

all Soy

products years ago because it was reaction with her thyroid.

I could give you this information. Every morning at 5:30am we have mixed Amber's

Levoxyl with about 2 tablespoons of water and she will take it with just a

little bit more in

the same cup to make sure she has all the medicine then she goes back to sleep

we wake

her up in a few hours and she starts her day. My husband and I make sure she has

her

medicine on time any little bit of time off and she is screwed up all day long

until the next

morning we get her back on time with it. She did lose her hair in the beginning

and now

she has long beautiful hair and her skin is much better also. She's skinny

though. But were

looking into other problems with her medical right now. I wish you luck.

Warm regards,

Sharon

>

> Hi I just wanted to quickly introduce myself here because I'll

> probably be lurking and posting a lot.

>

> I haven't been feeling good for so long now, and trying to lose weight

> has been so frustrating for so long despite pushing myself to do

> high-intensity cardio kickboxing an hour a day and watching what I

> ate.... even on a very low carb, lower fat diet the weight hardly

> budges. And I have been having horrible problems with heel pains and

> wrist pains, etc. My blood pressure was also causing some issues,

> even though I was on meds. Just all kinds of little things. But

> nothing was turning up when I went to military doctors. I started

> using my company's insurance instead and have just begun seeing

> specialists. Last week my bloodwork showed Hashimoto's and

> hypothyroidism. I'm in a whirlwind of doctor's visits, lab visits,

> and reading right now. And I have an appt with a new endocrinologist

> already (because I do not like the one I have-- he must go!). The new

> doctor served as medical editor for some of Shoman's books, which

> I've been reading, so I'm very anxious to see her in mid-October.

>

> Questions so far:

>

> I started levoxyl two days ago, because I do feel like I should do

> SOMETHING in the meantime since this appt isn't until October, and

> already can see hair falling out floating around me just walking! I

> hope this is only a temporary thing? Thyroid problems run in my

> family and so does a tendency to lose hair over every little thing. I

> seem to have inherited both.

>

> I'm on prednisone for hives that will not stay away right now as well.

> I cannot find any information on what effect taking steroids have on

> hashimotos or the thyroid. Can anyone help?

>

[Guest guest]

Thanks for the info! I've been trying to take the medicine the same

time each day, always on an empty stomach at least an hour before I

eat.

> >

> > Hi I just wanted to quickly introduce myself here because I'll

> > probably be lurking and posting a lot.

> >

> > I haven't been feeling good for so long now, and trying to lose

weight

> > has been so frustrating for so long despite pushing myself to do

> > high-intensity cardio kickboxing an hour a day and watching what I

> > ate.... even on a very low carb, lower fat diet the weight hardly

> > budges. And I have been having horrible problems with heel pains

and

> > wrist pains, etc. My blood pressure was also causing some issues,

> > even though I was on meds. Just all kinds of little things. But

> > nothing was turning up when I went to military doctors. I started

> > using my company's insurance instead and have just begun seeing

> > specialists. Last week my bloodwork showed Hashimoto's and

> > hypothyroidism. I'm in a whirlwind of doctor's visits, lab

visits,

> > and reading right now. And I have an appt with a new

endocrinologist

> > already (because I do not like the one I have-- he must go!).

The new

> > doctor served as medical editor for some of Shoman's books,

which

> > I've been reading, so I'm very anxious to see her in mid-October.

> >

> > Questions so far:

> >

> > I started levoxyl two days ago, because I do feel like I should do

> > SOMETHING in the meantime since this appt isn't until October, and

> > already can see hair falling out floating around me just

walking! I

> > hope this is only a temporary thing? Thyroid problems run in my

> > family and so does a tendency to lose hair over every little

thing. I

> > seem to have inherited both.

> >

> > I'm on prednisone for hives that will not stay away right now as

well.

> > I cannot find any information on what effect taking steroids have

on

> > hashimotos or the thyroid. Can anyone help?

> >

>

[Guest guest]

Welcome Tough Cookie '-). This is a great group with lots of information. Enjoy

Cheryl Burton ncicheryl@...

To: asthma Sent: Thursday, February 12, 2009 9:06:52 AMSubject: New here

Hello,

I am new to the group, although not new to Asthma. I have had asthma since forever and I am 22 years old now.

I hope we can connect. I am looking forward to getting in touch with everyone in the group.

Thanks.

[Guest guest]

I just joined and these people are great. Any thing you need to know someone usually does.

To: asthma Sent: Thursday, February 12, 2009 11:06:52 AMSubject: New here

Hello,

I am new to the group, although not new to Asthma. I have had asthma since forever and I am 22 years old now.

I hope we can connect. I am looking forward to getting in touch with everyone in the group.

Thanks.

[Guest guest]

Hi hun!!!

Welcome aboard!!! I'm Ishia and I'm happy you join... don't be ashame to ask or tell us everything you want Ok?

hope you are feeling Ok..

Hugs!

Ishia

-- New here

Hello,

I am new to the group, although not new to Asthma. I have had asthma since forever and I am 22 years old now.

I hope we can connect. I am looking forward to getting in touch with everyone in the group.

Thanks.

[Guest guest]

Carey,

Please go to the web site www.firstlinewellness.com you sound so much like me. 

FLW has really helped me.  I met Tamsin in the video on their web site and it

has really helped her.  They haven't begun marketing there program -- but leave

your information, you really ought to look into it -- i was like you, my

suffering started when I was about 15 & now I'm 52 that's too long to go without

relief.

Jill 

[Guest guest]

I think most of us have been where you rare dr. wise and it sucks. You might try

a holistic dr. butif that doesnt work I would go to Mayo Clinic or

Dr..Teitelbaum clinic which is Fibromyalgia and  Fatigue center. I go to the

one in Atlanta and I have faith in them. dr. /Teitelbaum " From Fatigued to

Fantistic " This book is my bible and is a connstant reference book for me.I hope

you get it figured out. Have a great Holiday

Debbie breehl

________________________________

Hello all, I am new to this list. I am Carey and I live in Ohio. Short

story long, my history is that I was very ill at age 15 with a mono-like virus.

I have had what I refer to as " fatigue episodes " ever since that illness..

I feel EXACTLY the same as I did then, only the episodes typically only

last from 1-3 days instead of a month, as they did when I was 15. I am now 38.

About a month ago I had another episode, however this one lasted for 2

weeks. Doctors finally tested me for EBV and cytomegalovirus. I am positive

for both, though the doctor said neither is active. And here I am tonight

with another fever, sore throat, headache and fatigue I am otherwise

generally very healthy! When I am not sick I work out very regularly, I eat very

well, I take vitamins, the works. Can anyone shed some light on how/why

these viruses are in me, yet the doctor says they are NOT making me sick?!!

[Guest guest]

You have to look at what you are doing every day. If you have to write it down

in a journal so that you can find your trigger.

Hello all, I am new to this list. I am Carey and I live in Ohio. Short

story long, my history is that I was very ill at age 15 with a mono-like virus.

I have had what I refer to as " fatigue episodes " ever since that illness.

I feel EXACTLY the same as I did then, only the episodes typically only

last from 1-3 days instead of a month, as they did when I was 15. I am now 38.

About a month ago I had another episode, however this one lasted for 2

weeks. Doctors finally tested me for EBV and cytomegalovirus. I am positive

for both, though the doctor said neither is active. And here I am tonight

with another fever, sore throat, headache and fatigue I am otherwise

generally very healthy! When I am not sick I work out ve

[Guest guest]

M.E. Stands for Myalgia encephalitis

[Guest guest]

Myalgic encephalitis.  diane

________________________________

M.E. Stands for Myalgia encephalitis