Re: Re: Autoantibodies thyroid -

[Guest guest]

, also has antibodies against her thyroid...it took her endo

close to a year to get the levels just right, but takes Synthroid and it

helps. However, with everything else, she still has significant fatigue (naps

every day). It is so difficult to sort out symptoms sometimes. She also takes

iron for having had severe iron deficiency anemia, and as you know, she has jra.

She also has some gut problems (stomachaches), has antibodies for Chron's, but

does not present symptomatically.

I haven't heard of a connection between antibodies against the thyroid and

rheumatoid arthritis - that's interesting! I hope you are able to get things

all sorted out so Dani can feel as well as possible.

________________________________

From: kristinz4 <kristin-smith@...>

Sent: Sat, June 12, 2010 4:22:00 AM

Subject: Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

, also has antibodies against her thyroid...it took her endo

close to a year to get the levels just right, but takes Synthroid and it

helps. However, with everything else, she still has significant fatigue (naps

every day). It is so difficult to sort out symptoms sometimes. She also takes

iron for having had severe iron deficiency anemia, and as you know, she has jra.

She also has some gut problems (stomachaches), has antibodies for Chron's, but

does not present symptomatically.

I haven't heard of a connection between antibodies against the thyroid and

rheumatoid arthritis - that's interesting! I hope you are able to get things

all sorted out so Dani can feel as well as possible.

________________________________

From: kristinz4 <kristin-smith@...>

Sent: Sat, June 12, 2010 4:22:00 AM

Subject: Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

I've not heard of antibodies to Crohn's. Macey is being treated for IBD

possibly Crohn's or a CVID-colitis disease. Can you remember the name of the

test that showed these?

Ursula

Mom to (17) and Macey (14)

Macey's Caringbridge site

Macey's Blog

________________________________

From: nancy barnes <nancyb315@...>

Sent: Sat, June 12, 2010 4:53:38 PM

Subject: Re: Re: Autoantibodies thyroid -

, also has antibodies against her thyroid...it took her endo

close to a year to get the levels just right, but takes Synthroid and it

helps. However, with everything else, she still has significant fatigue (naps

every day). It is so difficult to sort out symptoms sometimes. She also takes

iron for having had severe iron deficiency anemia, and as you know, she has jra.

She also has some gut problems (stomachaches), has antibodies for Chron's, but

does not present symptomatically.

I haven't heard of a connection between antibodies against the thyroid and

rheumatoid arthritis - that's interesting! I hope you are able to get things

all sorted out so Dani can feel as well as possible.

________________________________

From: kristinz4 <kristin-smith@...>

Sent: Sat, June 12, 2010 4:22:00 AM

Subject: Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

I believe ASCA and ANCA antibodies...ASCA stands for anti-saccharomyces

cerevisiaebut I forget what the ANCA stands for.

Ursula Holleman <uahollem@...>

Sent: Sat, June 12, 2010 2:01:08 PM

Subject: Re: Re: Autoantibodies thyroid -

I've not heard of antibodies to Crohn's. Macey is being treated for IBD

possibly Crohn's or a CVID-colitis disease. Can you remember the name of the

test that showed these?

Ursula

Mom to (17) and Macey (14)

Macey's Caringbridge site

Macey's Blog

________________________________

From: nancy barnes <nancyb315@...>

Sent: Sat, June 12, 2010 4:53:38 PM

Subject: Re: Re: Autoantibodies thyroid -

, also has antibodies against her thyroid...it took her endo

close to a year to get the levels just right, but takes Synthroid and it

helps. However, with everything else, she still has significant fatigue (naps

every day). It is so difficult to sort out symptoms sometimes. She also takes

iron for having had severe iron deficiency anemia, and as you know, she has jra.

She also has some gut problems (stomachaches), has antibodies for Chron's, but

does not present symptomatically.

I haven't heard of a connection between antibodies against the thyroid and

rheumatoid arthritis - that's interesting! I hope you are able to get things

all sorted out so Dani can feel as well as possible.

________________________________

From: kristinz4 <kristin-smith@...>

Sent: Sat, June 12, 2010 4:22:00 AM

Subject: Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

Is this the Prometheus test?

Ursula

On Jun 12, 2010, at 5:26 PM, nancy barnes <nancyb315@...> wrote:

I believe ASCA and ANCA antibodies...ASCA stands for anti-saccharomyces

cerevisiaebut I forget what the ANCA stands for.

Ursula Holleman <uahollem@...>

Sent: Sat, June 12, 2010 2:01:08 PM

Subject: Re: Re: Autoantibodies thyroid -

I've not heard of antibodies to Crohn's. Macey is being treated for IBD possibly

Crohn's or a CVID-colitis disease. Can you remember the name of the test that

showed these?

Ursula

Mom to (17) and Macey (14)

Macey's Caringbridge site

Macey's Blog

________________________________

From: nancy barnes <nancyb315@...>

Sent: Sat, June 12, 2010 4:53:38 PM

Subject: Re: Re: Autoantibodies thyroid -

, also has antibodies against her thyroid...it took her endo close

to a year to get the levels just right, but takes Synthroid and it helps.

However, with everything else, she still has significant fatigue (naps every

day). It is so difficult to sort out symptoms sometimes. She also takes iron for

having had severe iron deficiency anemia, and as you know, she has jra. She also

has some gut problems (stomachaches), has antibodies for Chron's, but does not

present symptomatically.

I haven't heard of a connection between antibodies against the thyroid and

rheumatoid arthritis - that's interesting! I hope you are able to get things all

sorted out so Dani can feel as well as possible.

________________________________

From: kristinz4 <kristin-smith@...>

Sent: Sat, June 12, 2010 4:22:00 AM

Subject: Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant due

to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think the

transplant will change the thyroid function at this point, the antibodies have

likely caused too much damage. Besides, our immuno says that Synthroid helps

everything work a little better. Kelsey has central hypothyroidism and her

health and pain level significantly improved with Synthroid. I think they should

add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

Not sure. I'll get the labs and check.

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant due

to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think the

transplant will change the thyroid function at this point, the antibodies have

likely caused too much damage. Besides, our immuno says that Synthroid helps

everything work a little better. Kelsey has central hypothyroidism and her

health and pain level significantly improved with Synthroid. I think they should

add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

Hi, !

Thanks for your reply. I'm tying to sort this out and appreciate your feedback.

Pls let me know if you think of anything else.

Do you like your endo? Anyone at UCLA? Or in LA?

Will let you know more about RA connection as I learn. And will let you +

Ursula know what was run.

Thinking of you and your precious family. (Get to eat protein when she

takes that iron, if you can).

Big hugs.

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

Hi ,

we have an amazing endo, but he is here in Orange County. Sadly, however, we

need to get this insurance mess remedied so can resume her care with him.

I hope you find a good endo you like for Dani in LA area.

My best to you and your family.

________________________________

From: " dietdoc@... " <dietdoc@...>

Sent: Sun, June 13, 2010 11:07:22 PM

Subject: Re: Re: Autoantibodies thyroid -

Hi, !

Thanks for your reply. I'm tying to sort this out and appreciate your feedback.

Pls let me know if you think of anything else.

Do you like your endo? Anyone at UCLA? Or in LA?

Will let you know more about RA connection as I learn. And will let you +

Ursula know what was run.

Thinking of you and your precious family. (Get to eat protein when she

takes that iron, if you can).

Big hugs.

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

Thank you, .

I'll let you know what happens...

I see you're working so hard w/ the insurance situation and will keep you and

in my thoughts.

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

[Guest guest]

Thank you, .

I'll let you know what happens...

I see you're working so hard w/ the insurance situation and will keep you and

in my thoughts.

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Re: Autoantibodies thyroid +

Hi ,

I also have antibodies and have found for both Conner and I, that we have to

treat very aggressively. We keep the TSH level very low, which greatly improves

symptoms. I hadn't asked to re-test Conner's antibody level since transplant

due to IVIG, he has now been off for a year and I plan on asking the endo about

re-testing him next month when we see him. The transplant team doesn't think

the transplant will change the thyroid function at this point, the antibodies

have likely caused too much damage. Besides, our immuno says that Synthroid

helps everything work a little better. Kelsey has central hypothyroidism and

her health and pain level significantly improved with Synthroid. I think they

should add it to the water supply

Has Dani started meds yet?

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (14-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

>

> Are there any PID kiddos in the group w/ autoantibodies against thyroid? If

so, what does the Dr. Say? How are you treating?

>

> Our immuno confirmed that our daughter's bloodwork is ++ for this. Apparently,

it can be associated w/ fatigue, rheumatoid arthritis, slow gut. We got it all.

>

> -how did transplant affect his autoimmune condition(s)?

>

>

> Mom to Dani, cvid

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>