Re: Isaac Endocrine Update

[Guest guest]

Mimi,

How high were his TSH levels? Did they start him on Meds?

Liam is on Synthriod. His levels were 17.9 when he was 14 months old....and with

meds he is stable....

R

Mom to Jed (13) Asthma, tics, CAPD

Liam (5) Asthma, Epilepsy, Hearing impaired,

SGA, Hypothyriod,Food Allergies.

Orlando Fl

[Guest guest]

I'm confused. I don't fully understand this TSH thing even though I

should since I had Grave's disease and had to have my thyroid

destroyed with radioactive iodine. I thought that if TSH levels are

too high, then there is too much thyroid hormone. I take Synthroid

and had my levels checked two weeks ago. The doctor said my TSH level

was too high and he lowered the Synthroid. Perhaps something

different is done for children?

Jodi Z

[Guest guest]

Hey Jodi-

From what I understand the when the TSH (thyroid stimulating hormone)

levels are high it means the body is working too hard so they need

more medicine to even it out. THere is also a T-4 which is

the " thyroid hormone " and Isaac's was normal but his body was having

to work too hard to keep it normal so his medicine has to be

increased. Does that make since? Maybe it is done differently for

kids..sounds like a question for the thyroid division??

>

> I'm confused. I don't fully understand this TSH thing even though I

> should since I had Grave's disease and had to have my thyroid

> destroyed with radioactive iodine. I thought that if TSH levels are

> too high, then there is too much thyroid hormone. I take Synthroid

> and had my levels checked two weeks ago. The doctor said my TSH

level

> was too high and he lowered the Synthroid. Perhaps something

> different is done for children?

>

> Jodi Z

>

[Guest guest]

http://www.altsupportthyroid.org/tsh.php

the first and second paragraphs are very imformative...

The TSH Story

What's the deal about TSH?

TSH. Try Something Harder. It can feel like you always have to do that when your

thyroid isn't working right, but TSH stands for Thyroid Stimulating Hormone. The

TSH test is the main one that doctors use to diagnose hypothyroidism or

hyperthyroidism, so it's an important test to understand.

TSH is a pituitary hormone, not a thyroid hormone. Its job is to stimulate the

thyroid to produce more thyroid hormone, so a high TSH level usually indicates

that your body isn't getting enough thyroid hormone. This condition is

hypothyroidism. A too-low TSH level usually indicates the opposite, or

hyperthyroidism.

The main problem with the TSH test is that the reference range for it is too

wide at most labs. The upper end of the range at some labs goes as high as 6,

but according to the hundreds of references that we've compiled, symptoms of

hypothyroidism accompanied by a TSH level over 2, sometimes lower, are suspect.

Whenever you get lab tests, ask for a copy of the results. Don't just let

someone tell you that your TSH level is " normal. "

Another problem with going by TSH levels is that because TSH is a pituitary

hormone, sometimes it doesn't tell the thyroid story. If there's a problem with

the pituitary gland, or the hypothalamus (which controls the pituitary), TSH

could be at an optimal level, but your actual thyroid hormones (T4 and T3) could

be too low, or too high. Using the TSH test to check for thyroid problems in

this situation is like looking at the thermostat to check the temperature of a

house when the thermostat itself is broken.

What now?

If you have a " normal " TSH level but you still think you have hypothyroidism,

ask for more thyroid testing, such as free T4 and free T3 tests, and tests for

thyroid antibodies. A TRH stimulation test might produce more conclusive test

results. Note that hypERthyroidism can also be missed by relying too much on the

TSH test; some people get symptoms of hyperthyroidism when their TSH level is

within the lab reference range, but at the low end of the range. You can also

print our files of references about TSH to bring to your doctor. If you think

you are undertreated, you can use these compilations to ask your doctor about a

dose increase.

To learn more about TSH levels and undertreated hypothyroidism, see Help, I'm

Hypothyroid and I Still Don't Feel Well by Shomon.

Keep in mind that some other health conditions have symptoms that are similar to

those of a malfunctioning thyroid. For more on this, see Maybe It Isn't Your

Thyroid in our Archives section.

What about low or suppressed TSH levels?

A lot of hypothyroid patients need to have a very low TSH level to be

symptom-free.

Some doctors believe that too little thyroid medication is preferable to the

possibility of temporarily overdosing, and won't increase the dose once the TSH

level is within the wide reference range. While it's commonly taught that too

much thyroid hormone causes health and functioning problems, it's not as well

known that so does even a slight deficiency of thyroid hormone. Undermedicating

a patient is like stopping a diet too soon, or driving a car too slowly for

traffic conditions. Doctors generally don't advise patients on diets to lose

only some of their excess weight so that they don't lose too much. Neither do

they drive under the speed limit so that they don't risk driving over it by

accident.

If you take a little too much thyroid medication, you can reduce your dose and

still reach your target. You'll never get there, however, if you don't have

enough thyroid hormone. Cars have speedometers, which are usually reliable, but

the TSH test has been proven to be an unreliable indicator of adequate thyroid

hormone levels.

Medical journal articles have shown that treatment started with a TSH level in

range accompanied by hypothyroidism symptoms resulted in health improvements. In

addition, a TSH level at the higher end of the range (but within many reference

ranges) may correlate with other health conditions - depression, heart disease,

and high cholesterol, for example.

Where are those TSH references?

See the links at the right on this and every page in the TSH section of this

site. The TSH References page provides an overview of the references and why we

need them. The compilations of references are divided into medical journal

references and references from other sources, and each has a printer-friendly

version so that you can take these references to your doctor if they're relevant

to your situation. On the " TSH: Patients' Experiences " pages, you can read how

getting the TSH level at the optimal level greatly improved the lives of many

thyroid patients.

On our Suppressed TSH Levels: Medical Journals page, we have medical references

to counter doctors' concern about a suppressed TSH level with some of their

patients.

T3 levels may be another piece of the puzzle to feeling well. See also our T3

Supplementation article and links.

[Guest guest]

Hi Mimi. That is good news how well Isaac is following his curve for

length, but that weight curve, that's the hardest one! I'm glad your

doctors are staying on top of his thyroid problems, hopefully they

can get him stabilized and he'll start gaining for you.

We had a similar choice wiht seeing Dr. H. We were originally going

to go to NY but the cost is just too much. We are even going to

have a tough time getting to the convention financially, but I am

determined to go! I feel like we'd get more out of the convention

that the NY visit right now.

I would love to meet you and your kiddos. Autumn and Isaac are the

same age and Summer is just a couple of months older than Sofia...

mom to Autumn RSS, Summer almost 7 mos SGA, Skye, Ocean

>

> Hello Everyone-

>

> We saw the endocrinologist today and Isaac's TSH (thyroid) levels

> were VERY high and the doc feels like that is why the weight gain

> hasn't been great. He did show me that Isaac has been following a

> curve and told me that over the last year Isaac has grown 4 1/2 " in

> length which isn't too bad. We discussed Growth Hormones and we are

> going to start them this year but the doc doesn't feel like it is

> absolutley necessary at this time so we are going to wait until

> June. He really wants to monitor the thyroid levels and get them

> back to normal before we start GH. They did do a bone scan today

and

> Isaac HATED it..it didn't help that the x-rays are done at the same

> place we get bloodwork taken..ugg!

>

> After careful deliberation we have decided to cancel our Dr. H

> appointment in New York. Being a one income family there is no way

> we could go to convention and New York. It is going to be a strain

> to just do one of the two. We get more " bang for our buck " with the

> convention because we will get to see Dr. H (hopefully) and get to

> meet the families (say hello again to families we met in 2004) and

> all of the educational information..It just seems to be the best

> option. My husbands parents are even thinking about going to

> convention!!

>

> Love-

> Mimi

> mom to : Isaac RSS, MCAD, Hypothyroid (24 mos 19 lbs, 30 " )

> Sofia will be 5 mos on Valentines day!

>

> P.S.- I skimmed through the " subject line " posts and wanted to say

> that there have been a couple of times that I felt like " no one

> cared " because I didn't get any responses to my post. Not too long

> ago I had a horrible Doctor's visit and I felt like that parent

with

> a new RSS diagnosis all over again. The responses I got to that

post

> pulled me through that awful cloud of guilt and self-blame. My

> heartfelt thanks to all who give so much of their time to console

> and inform on this listserve!!

>

[Guest guest]

Hi Mimi. That is good news how well Isaac is following his curve for

length, but that weight curve, that's the hardest one! I'm glad your

doctors are staying on top of his thyroid problems, hopefully they

can get him stabilized and he'll start gaining for you.

We had a similar choice wiht seeing Dr. H. We were originally going

to go to NY but the cost is just too much. We are even going to

have a tough time getting to the convention financially, but I am

determined to go! I feel like we'd get more out of the convention

that the NY visit right now.

I would love to meet you and your kiddos. Autumn and Isaac are the

same age and Summer is just a couple of months older than Sofia...

mom to Autumn RSS, Summer almost 7 mos SGA, Skye, Ocean

>

> Hello Everyone-

>

> We saw the endocrinologist today and Isaac's TSH (thyroid) levels

> were VERY high and the doc feels like that is why the weight gain

> hasn't been great. He did show me that Isaac has been following a

> curve and told me that over the last year Isaac has grown 4 1/2 " in

> length which isn't too bad. We discussed Growth Hormones and we are

> going to start them this year but the doc doesn't feel like it is

> absolutley necessary at this time so we are going to wait until

> June. He really wants to monitor the thyroid levels and get them

> back to normal before we start GH. They did do a bone scan today

and

> Isaac HATED it..it didn't help that the x-rays are done at the same

> place we get bloodwork taken..ugg!

>

> After careful deliberation we have decided to cancel our Dr. H

> appointment in New York. Being a one income family there is no way

> we could go to convention and New York. It is going to be a strain

> to just do one of the two. We get more " bang for our buck " with the

> convention because we will get to see Dr. H (hopefully) and get to

> meet the families (say hello again to families we met in 2004) and

> all of the educational information..It just seems to be the best

> option. My husbands parents are even thinking about going to

> convention!!

>

> Love-

> Mimi

> mom to : Isaac RSS, MCAD, Hypothyroid (24 mos 19 lbs, 30 " )

> Sofia will be 5 mos on Valentines day!

>

> P.S.- I skimmed through the " subject line " posts and wanted to say

> that there have been a couple of times that I felt like " no one

> cared " because I didn't get any responses to my post. Not too long

> ago I had a horrible Doctor's visit and I felt like that parent

with

> a new RSS diagnosis all over again. The responses I got to that

post

> pulled me through that awful cloud of guilt and self-blame. My

> heartfelt thanks to all who give so much of their time to console

> and inform on this listserve!!

>

[Guest guest]

Thank you.

Jodi Z

>

> http://www.altsupportthyroid.org/tsh.php

>

> the first and second paragraphs are very imformative...

> The TSH Story

> What's the deal about TSH?

> TSH. Try Something Harder. It can feel like you always have to do

that when your thyroid isn't working right, but TSH stands for

Thyroid Stimulating Hormone. The TSH test is the main one that

doctors use to diagnose hypothyroidism or hyperthyroidism, so it's

an important test to understand.

>

> TSH is a pituitary hormone, not a thyroid hormone. Its job is to

stimulate the thyroid to produce more thyroid hormone, so a high TSH

level usually indicates that your body isn't getting enough thyroid

hormone. This condition is hypothyroidism. A too-low TSH level

usually indicates the opposite, or hyperthyroidism.

>

> The main problem with the TSH test is that the reference range for

it is too wide at most labs. The upper end of the range at some labs

goes as high as 6, but according to the hundreds of references that

we've compiled, symptoms of hypothyroidism accompanied by a TSH

level over 2, sometimes lower, are suspect. Whenever you get lab

tests, ask for a copy of the results. Don't just let someone tell

you that your TSH level is " normal. "

>

> Another problem with going by TSH levels is that because TSH is a

pituitary hormone, sometimes it doesn't tell the thyroid story. If

there's a problem with the pituitary gland, or the hypothalamus

(which controls the pituitary), TSH could be at an optimal level,

but your actual thyroid hormones (T4 and T3) could be too low, or

too high. Using the TSH test to check for thyroid problems in this

situation is like looking at the thermostat to check the temperature

of a house when the thermostat itself is broken.

>

> What now?

> If you have a " normal " TSH level but you still think you have

hypothyroidism, ask for more thyroid testing, such as free T4 and

free T3 tests, and tests for thyroid antibodies. A TRH stimulation

test might produce more conclusive test results. Note that

hypERthyroidism can also be missed by relying too much on the TSH

test; some people get symptoms of hyperthyroidism when their TSH

level is within the lab reference range, but at the low end of the

range. You can also print our files of references about TSH to bring

to your doctor. If you think you are undertreated, you can use these

compilations to ask your doctor about a dose increase.

>

> To learn more about TSH levels and undertreated hypothyroidism,

see Help, I'm Hypothyroid and I Still Don't Feel Well by Shomon.

>

> Keep in mind that some other health conditions have symptoms that

are similar to those of a malfunctioning thyroid. For more on this,

see Maybe It Isn't Your Thyroid in our Archives section.

>

> What about low or suppressed TSH levels?

> A lot of hypothyroid patients need to have a very low TSH level to

be symptom-free.

>

> Some doctors believe that too little thyroid medication is

preferable to the possibility of temporarily overdosing, and won't

increase the dose once the TSH level is within the wide reference

range. While it's commonly taught that too much thyroid hormone

causes health and functioning problems, it's not as well known that

so does even a slight deficiency of thyroid hormone. Undermedicating

a patient is like stopping a diet too soon, or driving a car too

slowly for traffic conditions. Doctors generally don't advise

patients on diets to lose only some of their excess weight so that

they don't lose too much. Neither do they drive under the speed

limit so that they don't risk driving over it by accident.

>

> If you take a little too much thyroid medication, you can reduce

your dose and still reach your target. You'll never get there,

however, if you don't have enough thyroid hormone. Cars have

speedometers, which are usually reliable, but the TSH test has been

proven to be an unreliable indicator of adequate thyroid hormone

levels.

>

> Medical journal articles have shown that treatment started with a

TSH level in range accompanied by hypothyroidism symptoms resulted

in health improvements. In addition, a TSH level at the higher end

of the range (but within many reference ranges) may correlate with

other health conditions - depression, heart disease, and high

cholesterol, for example.

>

> Where are those TSH references?

> See the links at the right on this and every page in the TSH

section of this site. The TSH References page provides an overview

of the references and why we need them. The compilations of

references are divided into medical journal references and

references from other sources, and each has a printer-friendly

version so that you can take these references to your doctor if

they're relevant to your situation. On the " TSH: Patients'

Experiences " pages, you can read how getting the TSH level at the

optimal level greatly improved the lives of many thyroid patients.

>

> On our Suppressed TSH Levels: Medical Journals page, we have

medical references to counter doctors' concern about a suppressed

TSH level with some of their patients.

>

> T3 levels may be another piece of the puzzle to feeling well. See

also our T3 Supplementation article and links.

>

>

>

[Guest guest]

mimi,

it sounds like Isaac's does ok hu. wish the thyroid levels were not an

issue but hopefuly it will work out. hugs

cara mom to jacob

Mimi wrote:

Hello Everyone-

We saw the endocrinologist today and Isaac's TSH (thyroid) levels

were VERY high and the doc feels like that is why the weight gain

hasn't been great. He did show me that Isaac has been following a

curve and told me that over the last year Isaac has grown 4 1/2 " in

length which isn't too bad. We discussed Growth Hormones and we are

going to start them this year but the doc doesn't feel like it is

absolutley necessary at this time so we are going to wait until

June. He really wants to monitor the thyroid levels and get them

back to normal before we start GH. They did do a bone scan today and

Isaac HATED it..it didn't help that the x-rays are done at the same

place we get bloodwork taken..ugg!

After careful deliberation we have decided to cancel our Dr. H

appointment in New York. Being a one income family there is no way

we could go to convention and New York. It is going to be a strain

to just do one of the two. We get more " bang for our buck " with the

convention because we will get to see Dr. H (hopefully) and get to

meet the families (say hello again to families we met in 2004) and

all of the educational information..It just seems to be the best

option. My husbands parents are even thinking about going to

convention!!

Love-

Mimi

mom to : Isaac RSS, MCAD, Hypothyroid (24 mos 19 lbs, 30 " )

Sofia will be 5 mos on Valentines day!

P.S.- I skimmed through the " subject line " posts and wanted to say

that there have been a couple of times that I felt like " no one

cared " because I didn't get any responses to my post. Not too long

ago I had a horrible Doctor's visit and I felt like that parent with

a new RSS diagnosis all over again. The responses I got to that post

pulled me through that awful cloud of guilt and self-blame. My

heartfelt thanks to all who give so much of their time to console

and inform on this listserve!!

[Guest guest]

mimi,

it sounds like Isaac's does ok hu. wish the thyroid levels were not an

issue but hopefuly it will work out. hugs

cara mom to jacob

Mimi wrote:

Hello Everyone-

We saw the endocrinologist today and Isaac's TSH (thyroid) levels

were VERY high and the doc feels like that is why the weight gain

hasn't been great. He did show me that Isaac has been following a

curve and told me that over the last year Isaac has grown 4 1/2 " in

length which isn't too bad. We discussed Growth Hormones and we are

going to start them this year but the doc doesn't feel like it is

absolutley necessary at this time so we are going to wait until

June. He really wants to monitor the thyroid levels and get them

back to normal before we start GH. They did do a bone scan today and

Isaac HATED it..it didn't help that the x-rays are done at the same

place we get bloodwork taken..ugg!

After careful deliberation we have decided to cancel our Dr. H

appointment in New York. Being a one income family there is no way

we could go to convention and New York. It is going to be a strain

to just do one of the two. We get more " bang for our buck " with the

convention because we will get to see Dr. H (hopefully) and get to

meet the families (say hello again to families we met in 2004) and

all of the educational information..It just seems to be the best

option. My husbands parents are even thinking about going to

convention!!

Love-

Mimi

mom to : Isaac RSS, MCAD, Hypothyroid (24 mos 19 lbs, 30 " )

Sofia will be 5 mos on Valentines day!

P.S.- I skimmed through the " subject line " posts and wanted to say

that there have been a couple of times that I felt like " no one

cared " because I didn't get any responses to my post. Not too long

ago I had a horrible Doctor's visit and I felt like that parent with

a new RSS diagnosis all over again. The responses I got to that post

pulled me through that awful cloud of guilt and self-blame. My

heartfelt thanks to all who give so much of their time to console

and inform on this listserve!!

[Guest guest]

hey mimi!!

sorry to hear he is now having a problem with his thyroid levels. i

hope it will all work out soon and i look forward to seeing you this

summer in chicago!!!

((HUGS))

jodie c

[Guest guest]

Mimi,

Hey. Yep, I would keep track of the thyroid thing. I think your

decision to do that and hold off on the GH is a good one because he

still did have some pretty good growth and evidently you are still

going to start GH in June. It is still early for him right now being

that he is 2, so you have plenty of time to get that started.

I also agree with you on your choice to go to the Convention. You DO

get more bang for your buck and as long as you try to get there a day

early you will probably get to see Dr. H. I know how it is living on

one income. If it wasn't for my wonderful, loving, supportive

parents, we probably wouldn't have been able to get to New

York either. So, I can definitely relate to your dilemma.

Keep us updated on Issac. And, I am one of those people from the

2004 convention you better be looking for! LOL. ;o) I may have to

swipe that Issac. Hee, hee. I bet Sofia is just as adorable.

Take care,

Jodi R.

>

> Hello Everyone-

>

> We saw the endocrinologist today and Isaac's TSH (thyroid) levels

> were VERY high and the doc feels like that is why the weight gain

> hasn't been great. He did show me that Isaac has been following a

> curve and told me that over the last year Isaac has grown 4 1/2 " in

> length which isn't too bad. We discussed Growth Hormones and we are

> going to start them this year but the doc doesn't feel like it is

> absolutley necessary at this time so we are going to wait until

> June. He really wants to monitor the thyroid levels and get them

> back to normal before we start GH. They did do a bone scan today

and

> Isaac HATED it..it didn't help that the x-rays are done at the same

> place we get bloodwork taken..ugg!

>

> After careful deliberation we have decided to cancel our Dr. H

> appointment in New York. Being a one income family there is no way

> we could go to convention and New York. It is going to be a strain

> to just do one of the two. We get more " bang for our buck " with the

> convention because we will get to see Dr. H (hopefully) and get to

> meet the families (say hello again to families we met in 2004) and

> all of the educational information..It just seems to be the best

> option. My husbands parents are even thinking about going to

> convention!!

>

> Love-

> Mimi

> mom to : Isaac RSS, MCAD, Hypothyroid (24 mos 19 lbs, 30 " )

> Sofia will be 5 mos on Valentines day!

>

> P.S.- I skimmed through the " subject line " posts and wanted to say

> that there have been a couple of times that I felt like " no one

> cared " because I didn't get any responses to my post. Not too long

> ago I had a horrible Doctor's visit and I felt like that parent

with

> a new RSS diagnosis all over again. The responses I got to that

post

> pulled me through that awful cloud of guilt and self-blame. My

> heartfelt thanks to all who give so much of their time to console

> and inform on this listserve!!

>