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I use HealthNet in Connecticut which is an HMO. They complain about everything.

My doctor is one tough cookie though, so she may get it through. Praying for a

good outcome with it.

Joe

> >

> > Phil: I went to see my endo today. You remember that my estradiol was 119

in the latest blood work. She wants to start me on Arimidex 1mg daily! She is

really concerned about all the cardiac risks in my profile, plus the high

hematacrit, and feels the high estradiol is another risk factor that I don't

need. I am pretty sure my insurance company won't pay for it, but she is going

to try. She is lowering my testosterone shots from 150 to 100. She is also

referring me to a urologist because I am having trouble peeing (my prostate

feels like a rock) and a hemotologist for the hematocrit. She wants him to do a

more thorough study of the issue. She raised my synthroid to 88mcg but left my

cytomel as is. The question I have for you is where can I get Arimidex if my

plan won't approve it. I have a written prescription. The CVS pharmacy I go to

said it would be $497 a month out of pocket. Is there a mail pharmacy where I

can get it cheaper?

> >

> > When I asked her to add me to copy on the next blood work, she started to

write down Dr. Noonan! The nurse caught it and the Dr. said that I was one of

the best informed patients she's ever had. That is all thanks to you and the

members of this board. You all provide such an invaluable service! I really

want to thank you Phil and the rest of the board responders. You are a

God-send!

> >

> > Joe

> >

>

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Great, great news!!!

Leila,Maysa, 19 mo, DOC band Grad 5.26.09

www.mymaysa.wordpress.com

From: dobenl <dobenl@...>Subject: Good newsPlagiocephaly Date: Wednesday, August 19, 2009, 11:22 AM

HI, My son was put in helmet after long disagreement with his doctor.When we visited CIRS s measurement was 16.7 mm ! It is his 6th week in helmet and his yestarday visit was really great. His number is now 8.6mm HIs head grown 13mm total.We are so happy. Maybe he will graduate before his 1st birthday!Doben & /9month old/

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Glad he's doing so well and that you pushed your doctor for the band.

-christine

sydney, 3.5 yrs, starband grad

>

> HI,

>

> My son was put in helmet after long disagreement with his doctor.When

we visited CIRS s measurement was 16.7 mm ! It is his 6th week in helmet

and his yestarday visit was really great. His number is now 8.6mm HIs head grown

13mm total.

> We are so happy. Maybe he will graduate before his 1st birthday!

>

> Doben & /9month old/

>

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  • 8 months later...
Guest guest

That sounds awesome!! My 2 NT kids obviously suffer from the effects that AS has

on my oldest son. We take him to get support from a child psych...but it is

great to see the siblings getting support as well. Something to think about for

sure.

>

> Hi All,

>

> I just wanted to share with you all something new that my daughters school is

doing. She is my 8 year old NT Daughter. I also have a 11 year old AS son and

a 5 year old NT daughter. Anyway the guidance councellor has started a " Super

Siblings " group for students who have a sibling with special needs.

>

> They have only met once but they were able to meet each other and play a game

together. I think that it is just wonderful that they would take the time to

look to the needs of the siblings that frankly often get left behind because we

are busy dealing with the " squeeky wheel " .

>

> My daughter is thrilled and I think that this will be a great opertunity for

her to realize that she is not alone and get some peer support of her own.

>

> Vickie

>

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Guest guest

How wonderful!! What a great idea!!

( ) Good News

Hi All,

I just wanted to share with you all something new that my daughters

school is doing. She is my 8 year old NT Daughter. I also have a 11 year

old AS son and a 5 year old NT daughter. Anyway the guidance councellor

has started a " Super Siblings " group for students who have a sibling

with special needs.

They have only met once but they were able to meet each other and play a

game together. I think that it is just wonderful that they would take

the time to look to the needs of the siblings that frankly often get

left behind because we are busy dealing with the " squeeky wheel " .

My daughter is thrilled and I think that this will be a great opertunity

for her to realize that she is not alone and get some peer support of

her own.

Vickie

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Wow, that really sounds wonderful. Growing up I could have really benefited from

that. One of my sisters has severe mental retardation and I just felt bad about

it for all sorts of reasons. Would have been nice to have felt like I was not

alone. I'm glad for your daughter!

> >

> > Hi All,

> >

> > I just wanted to share with you all something new that my daughters school

is doing. She is my 8 year old NT Daughter. I also have a 11 year old AS son

and a 5 year old NT daughter. Anyway the guidance councellor has started a

" Super Siblings " group for students who have a sibling with special needs.

> >

> > They have only met once but they were able to meet each other and play a

game together. I think that it is just wonderful that they would take the time

to look to the needs of the siblings that frankly often get left behind because

we are busy dealing with the " squeeky wheel " .

> >

> > My daughter is thrilled and I think that this will be a great opertunity for

her to realize that she is not alone and get some peer support of her own.

> >

> > Vickie

> >

>

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  • 8 months later...

As for you being hperthyroid, did you have any more than a TSH test? I ask

because that's what they kept telling me and I still felt sick. It was my

Rheumatologist who finally agreed to have me tested for FreeT3, FreeT4,

ReverseT3 and TSH all at the same time after a 12 hour fast and with no meds of

any kind at all before the test.

 

It showed I was not converting from T4 to T3 properly and had way too much

Reverse T3 which meant my cells were getting very little of the T3 hormone that

they needed to run my body. That's why we always ask people to post their test

results including the lab ranges (each lab range is

different).

 

Pay attention to how you feel on a daily basis now that you've decreased the

levothyroxine, so that you'll be able to know what to tell the doctor. I'd write

it down in a little notebook every day.

 

I hope it all works out well for you.

 

 

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: H <macbarb0503@...>

Subject: Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's.  My

antibiodies were sky high.  If I remember right, he said they were over 800.  He

is sending all the results here, so I should have them next week.  Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right. 

I was very impressed by the Mayo Clinic.  The blood was taken on Monday.  I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him. 

He spent over an hour with me, explaining things and answering my questions. 

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient.  It was just after 5 PM when he called with

the good news.

The only thing that wasn't clear is why I have swelling behind the collar bone,

at the base of my neck, on both sides.  When I asked the doctor if the swelling

increased the chance there was a malignancy, he said no because he couldn't feel

any swollen lymph nodes under the swelling.  When I asked him if he had seen

swelling there before he said, " Oh maybe a time or two. "   Huh?  He said problems

with the thyroid can cause swelling, that I should watch it, and if it gets

bigger, see my doctor here.  He seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill.  This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking!  It was in the mid-twenties in ville, and

there was ice on my windshield!  The charge was $4.  I would have gladly paid

much more!  Each time a gave them a five dollar bill, they tried to return the

change.  I would have paid a lot more than $5 to avoid walking in that bitter

cold.  At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb 

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I looked up the lump behind your ear, and maybe this is why the doctor is not

converned.

 

Dr. Goce Aleksovski

replied January 8th, 2009

Ear, Nose and Throat Disorders Answer A5286

Given your description of a pea-sized bump under the skin behind the ear, you

might be having folliculitis (infection of a hair follicle) or sebaceous cyst

(closed sebaceous gland). If it continues to grow or becomes painful again, it

is advisable that you visit your family doctor, who might perform disinfection,

incision, and prescribe a topical or maybe even oral antibiotic treatment.

Another possibility might be an enlarged lymph node, provoked by pathological

happenings in the ear, throat or other surrounding organs. If it does not heal

on its own in the next couple of days, it might be recommended that you visit

your doctor.

If you decide to go to the doctor I'd choose and ENT who might have some

specialized information in that area.

 

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: H <macbarb0503@...>

Subject: Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's.  My

antibiodies were sky high.  If I remember right, he said they were over 800.  He

is sending all the results here, so I should have them next week.  Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right. 

I was very impressed by the Mayo Clinic.  The blood was taken on Monday.  I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him. 

He spent over an hour with me, explaining things and answering my questions. 

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient.  It was just after 5 PM when he called with

the good news.

The only thing that wasn't clear is why I have swelling behind the collar bone,

at the base of my neck, on both sides.  When I asked the doctor if the swelling

increased the chance there was a malignancy, he said no because he couldn't feel

any swollen lymph nodes under the swelling.  When I asked him if he had seen

swelling there before he said, " Oh maybe a time or two. "   Huh?  He said problems

with the thyroid can cause swelling, that I should watch it, and if it gets

bigger, see my doctor here.  He seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill.  This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking!  It was in the mid-twenties in ville, and

there was ice on my windshield!  The charge was $4.  I would have gladly paid

much more!  Each time a gave them a five dollar bill, they tried to return the

change.  I would have paid a lot more than $5 to avoid walking in that bitter

cold.  At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb 

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He ordered 16 blood tests Roni, so I think he did. I know he tested more than

the TSH because he told me about the antibioties being very high. That test

wasn't done where I live. I'll soon know for sure when the results get here.

In the cover letter I sent up there, that was passed on to the doctor, I

complained that they wouldn't do the four basic thyroid tests here for Free T3,

Free T4, Reverse T3, and TSH. I asked some questions, but not too many

because talking was difficult. I got laryngitis after visiting my son and

grandchildren on Monday after the bloodwork. That day I was feeling so good, I

drove at least another two and 1/2 hours after driving 3 hours to get to

ville. It was about an hour and a quarter each way. Maybe I overdid it.

My Son kept saying he would go with me, or meet me there whenever I wanted him

to, but the doctor told me I would be able to drive after the biopsy, and the

results wouldn't be known until late afternoon, so I told my son there was no

need for him to be there. I just had to hang around the hospital for a couple

of hours to make sure there was no swelling or other problems before driving so

far.

I guess I should have asked about the tests you mention, because by now I should

have learned not to take anything for granted.

That's a good suggestion to keep track of how I feel every day on 1/2 of a pill

by writing it in a notebook. I'll do that, and will be sure to ask for more

tests if any were omitted. If the T4 wasn't converting to T3 properly, my TSH

wouldn't have gone down from over 8 to under one would it? Sorry, I obviously

still don't understand all of this.

Thanks for your response and your good wishes.

Barb

Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's. My

antibiodies were sky high. If I remember right, he said they were over 800. He

is sending all the results here, so I should have them next week. Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right.

I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him.

He spent over an hour with me, explaining things and answering my questions.

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient. It was just after 5 PM when he called with

the good news.

The only thing that wasn't clear is why I have swelling behind the collar bone,

at the base of my neck, on both sides. When I asked the doctor if the swelling

increased the chance there was a malignancy, he said no because he couldn't feel

any swollen lymph nodes under the swelling. When I asked him if he had seen

swelling there before he said, " Oh maybe a time or two. " Huh? He said problems

with the thyroid can cause swelling, that I should watch it, and if it gets

bigger, see my doctor here. He seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill. This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking! It was in the mid-twenties in ville, and

there was ice on my windshield! The charge was $4. I would have gladly paid

much more! Each time a gave them a five dollar bill, they tried to return the

change. I would have paid a lot more than $5 to avoid walking in that bitter

cold. At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb

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I'm sorry Roni, but you must have me confused with someone else. This is what I

wrote:

" The only thing that wasn't clear is why I have swelling behind the collar bone,

at the base of my neck, on both sides. When I asked the doctor if the swelling

increased the chance there was a malignancy, he said no because he couldn't feel

any swollen lymph nodes under the swelling. When I asked him if he had seen

swelling there before he said, " Oh maybe a time or two. " Huh? He said problems

with the thyroid can cause swelling, that I should watch it, and if it gets

bigger, see my doctor here. "

It's not pea sized, hard, or near my ear. It's soft, swollen, and about the

size of a golf ball on the left side. The one on the right is not as large or

prominent, but it is definitely there. I know it's easy to get things mixed up,

since I do it all the time! LOL!

Barb

Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's. My

antibiodies were sky high. If I remember right, he said they were over 800. He

is sending all the results here, so I should have them next week. Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right.

I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him.

He spent over an hour with me, explaining things and answering my questions.

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient. It was just after 5 PM when he called with

the good news.

IHe seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill. This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking! It was in the mid-twenties in ville, and

there was ice on my windshield! The charge was $4. I would have gladly paid

much more! Each time a gave them a five dollar bill, they tried to return the

change. I would have paid a lot more than $5 to avoid walking in that bitter

cold. At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb

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It doesn't make sense to me either. A high TSH means the thyroid is too low, a

low TSH means the thyroid is too high. For it to change so dramatically, I would

definitely want to have the full set of testing. It could have been a problem

with the lab, but there's no real way to find out. There are other factors, but

even with that, the huge change so quickly is very

puzzling.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: H <macbarb0503@...>

Subject: Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's.  My

antibiodies were sky high.  If I remember right, he said they were over 800.  He

is sending all the results here, so I should have them next week.  Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right. 

I was very impressed by the Mayo Clinic.  The blood was taken on Monday.  I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him. 

He spent over an hour with me, explaining things and answering my questions. 

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient.  It was just after 5 PM when he called with

the good news.

The only thing that wasn't clear is why I have swelling behind the collar bone,

at the base of my neck, on both sides.  When I asked the doctor if the swelling

increased the chance there was a malignancy, he said no because he couldn't feel

any swollen lymph nodes under the swelling.  When I asked him if he had seen

swelling there before he said, " Oh maybe a time or two. "   Huh?  He said problems

with the thyroid can cause swelling, that I should watch it, and if it gets

bigger, see my doctor here.  He seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill.  This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking!  It was in the mid-twenties in ville, and

there was ice on my windshield!  The charge was $4.  I would have gladly paid

much more!  Each time a gave them a five dollar bill, they tried to return the

change.  I would have paid a lot more than $5 to avoid walking in that bitter

cold.  At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb 

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It's possibly a lipoma which is a fatty tumor. It's usually not a problem unless

it grows and starts pressing on other things and causes pain. You could have it

check out by an otolaryngologist which is an ear, nose and throat doctor.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

From: H <macbarb0503@...>

Subject: Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's.  My

antibiodies were sky high.  If I remember right, he said they were over 800.  He

is sending all the results here, so I should have them next week.  Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right. 

I was very impressed by the Mayo Clinic.  The blood was taken on Monday.  I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him. 

He spent over an hour with me, explaining things and answering my questions. 

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient.  It was just after 5 PM when he called with

the good news.

IHe seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill.  This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking!  It was in the mid-twenties in ville, and

there was ice on my windshield!  The charge was $4.  I would have gladly paid

much more!  Each time a gave them a five dollar bill, they tried to return the

change.  I would have paid a lot more than $5 to avoid walking in that bitter

cold.  At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb 

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Share on other sites

Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's. My

antibiodies were sky high. If I remember right, he said they were over 800. He

is sending all the results here, so I should have them next week. Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right.

I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him.

He spent over an hour with me, explaining things and answering my questions.

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient. It was just after 5 PM when he called with

the good news.

IHe seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill. This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking! It was in the mid-twenties in ville, and

there was ice on my windshield! The charge was $4. I would have gladly paid

much more! Each time a gave them a five dollar bill, they tried to return the

change. I would have paid a lot more than $5 to avoid walking in that bitter

cold. At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb

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Now there's a doctor I haven't seen. I'll keep that in mind. Thanks Roni.

Barb

Good News

hypothyroidism

Date: Friday, December 31, 2010, 9:47 AM

All of you on this forum have impressed me with your knowledge, especially now

that I've had more testing done, and found out I have Hashimoto's. My

antibiodies were sky high. If I remember right, he said they were over 800. He

is sending all the results here, so I should have them next week. Fortunately

for me, the biopsy came back benign.

You knew all along that there was something more than an underactive thyroid,

and you were right.

I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw

the endocrinologist on Tuesday, and he apologized because he had tried, but had

been unable to schedule the biopsy for the same day as my appointment with him.

He spent over an hour with me, explaining things and answering my questions.

Wednesday I had the biopsy, and the doctor called me himself with the results

right after he saw his last patient. It was just after 5 PM when he called with

the good news.

IHe seemed unconcerned about it.

He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go

back for blood work in six weeks, because the TSH was too low and I was too

hyper taking a whole pill. This should be interesting, because my doctor here

told me to go back for more bloodwork in six months, not six weeks.

Thank God for valet parking! It was in the mid-twenties in ville, and

there was ice on my windshield! The charge was $4. I would have gladly paid

much more! Each time a gave them a five dollar bill, they tried to return the

change. I would have paid a lot more than $5 to avoid walking in that bitter

cold. At least it's bitter cold for FL.

Thanks again for all the feedback, help, and support from everyone here.

Barb

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Barb,

Excellent news! A great way to start the new year. Happy New Year, everyone.

You wrote:

>

> ... He also said I should decrease the dose of Levothyroxin to 1/2 a pill,

> and go back for blood work in six weeks, because the TSH was too low and

> I was too hyper taking a whole pill. This should be interesting, because

> my doctor here told me to go back for more bloodwork in six months, not

> six weeks.

A 50% change in dosage is pretty large. Six weeks is needed for things

to stabilize after such a change. OTOH, if your local doctor thought the

dosage was close to ideal and stable, six months to a year could be

appropriate. They both could be right, sort of, just at different times.

Let us know what your actual tests showed, though, so we can see if you

really were hyperT. If you were only a little over the line, a smaller

dosage change might have been more effective.

>

> Thank God for valet parking! It was in the mid-twenties in ville,

> and there was ice on my windshield! The charge was $4. I would have

> gladly paid much more! Each time a gave them a five dollar bill, they

> tried to return the change. I would have paid a lot more than $5 to

> avoid walking in that bitter cold. At least it's bitter cold for FL.

>

We went from shirt sleeve weather, near 70 oF to the low teens with

wind. I almost left my coat in the car last night. I was glad I didn't

when I went home.

Chuck

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Barb,

You wrote:

>

> ...He said problems with the thyroid can

> cause swelling, that I should watch it, and if it gets bigger, see my

> doctor here.

High antibodies means your thyroid gland is going to be inflamed. It is

under attack. That is what the -itis in Hashimoto's Thyroiditis means.

Inflammation can cause swelling or edema in nearby tissue. If that is

what is going on, the swelling should go away when the antibodies calm down.

Chuck

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I'm so glad you can start the new year with some good news!

Even Hashimoto's is in a sense good news, because it provides some level

of explanation for some of the confusing issues you have. But I'll be

darned if I can understand how it could explain all of them. The bad

news about Hashimoto's is that dosing can be a real PITA until your

thyroid is completely destroyed.

As for knowledge Chuck certainly has a massive level; probably IMHO a

lot more than many doctors. And Roni has acquired a lot of expertise

the hard way with her quest for improved health. Most of the rest of us

learn from them and from others who share their trials and tribulations

here and from what we read on the subject; as well as what we have

personally experienced.

As for the swelling I'm afraid that once again I'll have to admit I

haven't a clue if there truly is no lymph node involvement; I would have

bet there was.

In any event it appears you're making progress; congratulations and all

the best throughout the new year.

Regards,

..

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

>

> Fri Dec 31, 2010 9:48 am (PST)

>

>

>

>

> All of you on this forum have impressed me with your knowledge,

> especially now that I've had more testing done, and found out I have

> Hashimoto's. My antibiodies were sky high. If I remember right, he

> said they were over 800. He is sending all the results here, so I

> should have them next week. Fortunately for me, the biopsy came back

> benign.

>

> You knew all along that there was something more than an underactive

> thyroid, and you were right.

>

> I was very impressed by the Mayo Clinic. The blood was taken on

> Monday. I saw the endocrinologist on Tuesday, and he apologized

> because he had tried, but had been unable to schedule the biopsy for

> the same day as my appointment with him. He spent over an hour with

> me, explaining things and answering my questions. Wednesday I had the

> biopsy, and the doctor called me himself with the results right after

> he saw his last patient. It was just after 5 PM when he called with

> the good news.

>

> The only thing that wasn't clear is why I have swelling behind the

> collar bone, at the base of my neck, on both sides. When I asked the

> doctor if the swelling increased the chance there was a malignancy, he

> said no because he couldn't feel any swollen lymph nodes under the

> swelling. When I asked him if he had seen swelling there before he

> said, " Oh maybe a time or two. " Huh? He said problems with the thyroid

> can cause swelling, that I should watch it, and if it gets bigger, see

> my doctor here. He seemed unconcerned about it.

>

> He also said I should decrease the dose of Levothyroxin to 1/2 a pill,

> and go back for blood work in six weeks, because the TSH was too low

> and I was too hyper taking a whole pill. This should be interesting,

> because my doctor here told me to go back for more bloodwork in six

> months, not six weeks.

>

> Thank God for valet parking! It was in the mid-twenties in

> ville, and there was ice on my windshield! The charge was $4. I

> would have gladly paid much more! Each time a gave them a five dollar

> bill, they tried to return the change. I would have paid a lot more

> than $5 to avoid walking in that bitter cold. At least it's bitter

> cold for FL.

>

> Thanks again for all the feedback, help, and support from everyone here.

>

> Barb

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Thanks Chuck,

The doctor at Mayo said my TSH was too low judging by blood tests taken twice by

my doctors here while on one pill a day. He said he didn't like to see it that

low. Because I told him my heart rate had been 145 when exercising and 100

resting he thought I might have been hyper. He also based it on the information

I gave him that while on one pill a day I was having difficulty sleeping,

nervousness, lost 8 pounds in 10 weeks, and was feeling hyper.

The blood draw at the Mayo clinic after I had been off of Levothyroxin for about

six weeks, with the exception of 5 days, was back up over 7. So I definitely

wasn't hyper when I was at the Clinic. After the last blood tests, I was told

by the doctor here to go back on the medication, but after 5 days, was told to

stop again by the Mayo Clinic. It seems a very small amount of medication makes

very big changes in my numbers, so you could be right that a change of 50% could

be too much. I'm going to keep a record of how I feel each day as Roni

suggested.

I will let you know about the blood tests after the paperwork arrives.

That was a huge change in your weather! It's a good thing you didn't leave your

coat in the car, because you needed it!

I hope today is the first day of a very good New Year for everyone here!

Barb

Re: Good News

Barb,

Excellent news! A great way to start the new year. Happy New Year, everyone.

You wrote:

>

> ... He also said I should decrease the dose of Levothyroxin to 1/2 a pill,

> and go back for blood work in six weeks, because the TSH was too low and

> I was too hyper taking a whole pill. This should be interesting, because

> my doctor here told me to go back for more bloodwork in six months, not

> six weeks.

A 50% change in dosage is pretty large. Six weeks is needed for things

to stabilize after such a change. OTOH, if your local doctor thought the

dosage was close to ideal and stable, six months to a year could be

appropriate. They both could be right, sort of, just at different times.

Let us know what your actual tests showed, though, so we can see if you

really were hyperT. If you were only a little over the line, a smaller

dosage change might have been more effective.

>

> Thank God for valet parking! It was in the mid-twenties in ville,

> and there was ice on my windshield! The charge was $4. I would have

> gladly paid much more! Each time a gave them a five dollar bill, they

> tried to return the change. I would have paid a lot more than $5 to

> avoid walking in that bitter cold. At least it's bitter cold for FL.

>

We went from shirt sleeve weather, near 70 oF to the low teens with

wind. I almost left my coat in the car last night. I was glad I didn't

when I went home.

Chuck

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Thank you . It is confusing isn't it? I understand what you're saying

about dosing being a PITA. Because of that, I'm surprised doctors don't suggest

removing the thyroid surgically while we're younger, rather than waiting until

we're older, when surgery could be riskier. Since we know it isn't going to get

better, is there really a benefit to keeping it when it seems unlikely it can

remain stable?

I have a friend who had a non-malignant growth on her thyroid, and surgery was

done to remove it. She wasn't having trouble breathing or swallowing, so maybe

it depends on the doctor.

I don't think the Mayo Clinic doctor had a clue about the swelling either, since

he said " maybe a time or two, " when I asked him if he'd seen this type of

swelling before. It was not a definitive answer. Maybe I'm just weird. When I

go back to the endocrinologist here, it will be interesting to hear what he has

to say about it.

I'm curious about how these doctors will respond to the fact that I canceled the

biopsy here because I was tired of waiting, and had it done at the Mayo Clinic.

I would much rather have had the diagnosis here, but the Mayo Clinic did in

three days what these doctors couldn't or wouldn't do in four and one half

months.

Thanks for the good wishes and for writing back. Happy New Year to you and

yours also.

Barb

Re: Good News

I'm so glad you can start the new year with some good news!

Even Hashimoto's is in a sense good news, because it provides some level

of explanation for some of the confusing issues you have. But I'll be

darned if I can understand how it could explain all of them. The bad

news about Hashimoto's is that dosing can be a real PITA until your

thyroid is completely destroyed.

As for knowledge Chuck certainly has a massive level; probably IMHO a

lot more than many doctors. And Roni has acquired a lot of expertise

the hard way with her quest for improved health. Most of the rest of us

learn from them and from others who share their trials and tribulations

here and from what we read on the subject; as well as what we have

personally experienced.

As for the swelling I'm afraid that once again I'll have to admit I

haven't a clue if there truly is no lymph node involvement; I would have

bet there was.

In any event it appears you're making progress; congratulations and all

the best throughout the new year.

Regards,

..

..

> Posted by: " H " macbarb0503@...

> <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News>

> westieabbey <westieabbey>

>

>

> Fri Dec 31, 2010 9:48 am (PST)

>

>

>

>

> All of you on this forum have impressed me with your knowledge,

> especially now that I've had more testing done, and found out I have

> Hashimoto's. My antibiodies were sky high. If I remember right, he

> said they were over 800. He is sending all the results here, so I

> should have them next week. Fortunately for me, the biopsy came back

> benign.

>

> You knew all along that there was something more than an underactive

> thyroid, and you were right.

>

> I was very impressed by the Mayo Clinic. The blood was taken on

> Monday. I saw the endocrinologist on Tuesday, and he apologized

> because he had tried, but had been unable to schedule the biopsy for

> the same day as my appointment with him. He spent over an hour with

> me, explaining things and answering my questions. Wednesday I had the

> biopsy, and the doctor called me himself with the results right after

> he saw his last patient. It was just after 5 PM when he called with

> the good news.

>

> The only thing that wasn't clear is why I have swelling behind the

> collar bone, at the base of my neck, on both sides. When I asked the

> doctor if the swelling increased the chance there was a malignancy, he

> said no because he couldn't feel any swollen lymph nodes under the

> swelling. When I asked him if he had seen swelling there before he

> said, " Oh maybe a time or two. " Huh? He said problems with the thyroid

> can cause swelling, that I should watch it, and if it gets bigger, see

> my doctor here. He seemed unconcerned about it.

>

> He also said I should decrease the dose of Levothyroxin to 1/2 a pill,

> and go back for blood work in six weeks, because the TSH was too low

> and I was too hyper taking a whole pill. This should be interesting,

> because my doctor here told me to go back for more bloodwork in six

> months, not six weeks.

>

> Thank God for valet parking! It was in the mid-twenties in

> ville, and there was ice on my windshield! The charge was $4. I

> would have gladly paid much more! Each time a gave them a five dollar

> bill, they tried to return the change. I would have paid a lot more

> than $5 to avoid walking in that bitter cold. At least it's bitter

> cold for FL.

>

> Thanks again for all the feedback, help, and support from everyone here.

>

> Barb

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Thank you Chuck. Do you think the antibodies will calm down when the TSH goes

down? I also wonder if eating habits and exercise which help to reduce

inflamation in the body, will make a difference in thyroid antibodies. Is it

possible to get the antibodies to stop attacking the thyroid, by eating only

foods that don't cause inflamation?

I know these are probably dumb questions, but this is how I learn. I'm thankful

to be able to learn from everyone here, who has experience and knowledge in this

area.

Barb

Re: Good News

Barb,

You wrote:

>

> ...He said problems with the thyroid can

> cause swelling, that I should watch it, and if it gets bigger, see my

> doctor here.

High antibodies means your thyroid gland is going to be inflamed. It is

under attack. That is what the -itis in Hashimoto's Thyroiditis means.

Inflammation can cause swelling or edema in nearby tissue. If that is

what is going on, the swelling should go away when the antibodies calm down.

Chuck

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Barb,

You wrote:

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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I think doctors have been blaming patients for their illnesses for such a long

time that we now think that if we could just do the " right things " we could help

ourselves. When the medical profession starts conducting themselves as doctors

instead of fee collectors maybe they will actually be able to help their

patients maintain and keep their health.

<>Roni

Immortality exists!

It's called knowledge!

 

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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Well those antibodies aren't very nice! I'm looking forward to reaching a

stable full replacement dose, so they will stop, or at least settle down.

Thanks for the information Chuck.

Re: Good News

Barb,

You wrote:

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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Re: Good News

I think doctors have been blaming patients for their illnesses for such a long

time that we now think that if we could just do the " right things " we could help

ourselves. When the medical profession starts conducting themselves as doctors

instead of fee collectors maybe they will actually be able to help their

patients maintain and keep their health.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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I know what you mean Roni. It was worth a try anyway. I just thought maybe

there was something that could be done to slow down the process of the

antibodies destroying my thyroid. Too bad we don't understand why they do it.

If we did, maybe we would know how to stop it.

Barb

Re: Good News

I think doctors have been blaming patients for their illnesses for such a long

time that we now think that if we could just do the " right things " we could help

ourselves. When the medical profession starts conducting themselves as doctors

instead of fee collectors maybe they will actually be able to help their

patients maintain and keep their health.

<>Roni

Immortality exists!

It's called knowledge!

Just because something isn't seen

doesn't mean it's not there<>

>

> Thank you Chuck. Do you think the antibodies will calm down when the TSH

> goes down?...

Probably no connection with TSH, diet, or anything else. The antibodies

will stop when the thyroid is no longer functioning. In many cases,

iodine and our meds, will only accelerate the attack. For some people,

the antibody attacks can come and go over a prolonged period before they

settle down. All you can do is keep adjusting the meds until you reach a

stable (full replacement) dose.

Chuck

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

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