Aa
Selenium for my child
Hello all.
I am writing to this community on behalf of my 10 year old daughter.
First a little background.
During prenatal test (given because of both my deceast wife age and mine) an amnio was performed and later geneticist told us that she had some of her cells had extra X chromosone.
Basically she is reguarded as a Turner syndrome child. But, understand she is mosaic meaning majority of her cells are normal XX. Some are XX with extra material.
Normally a Turner syndrome (only effects girls) is missing an X or if mosaic, those deformed cells are missing an X.
The net result for my daughter so far has been short stature. So far she is still growing but well below the standard curve. The geneticist so far has not insisted upon growth hormones.
But, now a new complications. Seems she has tested positive for autoimmunity of the thyroid.
My geneticist frankly says that eventually the autoimmune disease will destroy her thyroid. She said that I have some time before I need to have her put on pills for this condition, she is producing enough thyroid hormone.
I have been reading up some. But still rough arround the edges. I understand a little about how there is T4 and T3 and one is floating free to be used while the other is not, but changes into the floating arround type when needed.
I read about that there is a relationship with selenium and iodine that effects the autoimmune disease from attacking and have also assume from what I read that nothing cures it, just slows it down.
So, here I am. I am currently grinding up brazil nuts allong with other nuts. (I seem to only find the variety nuts that have some Brazil nuts in them) and grind them up so I can give her a teaspoon full each day. The iodized salt I think should be good enough and I am looking into good kids vitamine that contains zinc.
What I wonder is, if the results are good, maybe I can keep her off of the thyroid pill. I say this because it is my understanding that once she goes on the pill she is basically committed to them and eventually her thyroid will fail. So while her body is currently producing enough thyroid, why not battle the auotimmunity. At least let her thyroid function for as many years as it can. Who knows maybe a cure could come allong and then she will still have her thyroid.
Another concearn,,, I wonder though, by not supplying her with the daily thyroid hormone if I am further robbing her of growth/height...
Her Turners syndrome I have read up on. Since she is mosaic it's no telling what the future holds. I have read/heard all kinds of comments both pro an con about the growth hormones and so far the geneticist does not recommend it. So I take her advice.
Anyway, while I have some time I am investigating as best I can. I told the geneticist about the selenium and she was not too enthusiastic. She states that the testing was not done as well as should be. And also that the concearns are usually based on areas of the world where this kind of minerals are low. But she saw no disagreement with giving her Brazil nuts.
Info/opinions apreciated, anything for the think-tank.
I am writing to this community on behalf of my 10 year old daughter.
First a little background.
During prenatal test (given because of both my deceast wife age and mine) an amnio was performed and later geneticist told us that she had some of her cells had extra X chromosone.
Basically she is reguarded as a Turner syndrome child. But, understand she is mosaic meaning majority of her cells are normal XX. Some are XX with extra material.
Normally a Turner syndrome (only effects girls) is missing an X or if mosaic, those deformed cells are missing an X.
The net result for my daughter so far has been short stature. So far she is still growing but well below the standard curve. The geneticist so far has not insisted upon growth hormones.
But, now a new complications. Seems she has tested positive for autoimmunity of the thyroid.
My geneticist frankly says that eventually the autoimmune disease will destroy her thyroid. She said that I have some time before I need to have her put on pills for this condition, she is producing enough thyroid hormone.
I have been reading up some. But still rough arround the edges. I understand a little about how there is T4 and T3 and one is floating free to be used while the other is not, but changes into the floating arround type when needed.
I read about that there is a relationship with selenium and iodine that effects the autoimmune disease from attacking and have also assume from what I read that nothing cures it, just slows it down.
So, here I am. I am currently grinding up brazil nuts allong with other nuts. (I seem to only find the variety nuts that have some Brazil nuts in them) and grind them up so I can give her a teaspoon full each day. The iodized salt I think should be good enough and I am looking into good kids vitamine that contains zinc.
What I wonder is, if the results are good, maybe I can keep her off of the thyroid pill. I say this because it is my understanding that once she goes on the pill she is basically committed to them and eventually her thyroid will fail. So while her body is currently producing enough thyroid, why not battle the auotimmunity. At least let her thyroid function for as many years as it can. Who knows maybe a cure could come allong and then she will still have her thyroid.
Another concearn,,, I wonder though, by not supplying her with the daily thyroid hormone if I am further robbing her of growth/height...
Her Turners syndrome I have read up on. Since she is mosaic it's no telling what the future holds. I have read/heard all kinds of comments both pro an con about the growth hormones and so far the geneticist does not recommend it. So I take her advice.
Anyway, while I have some time I am investigating as best I can. I told the geneticist about the selenium and she was not too enthusiastic. She states that the testing was not done as well as should be. And also that the concearns are usually based on areas of the world where this kind of minerals are low. But she saw no disagreement with giving her Brazil nuts.
Info/opinions apreciated, anything for the think-tank.
Hello Gimel.
Thanks for the info, sorry about my delayed responses.
I'm going to push the subject on the next visit. It will be good to have this advance knowledge as to cost.
I will write back and keep you updated.
RJ
Thanks for the info, sorry about my delayed responses.
I'm going to push the subject on the next visit. It will be good to have this advance knowledge as to cost.
I will write back and keep you updated.
RJ
You know I'm surprised that they don't just have a listing of typical excuses not to do FT3 test. That way they could save time by just giving you the number. These are the ones we seem to hear most often.
1.You don't need it.
2. TSH tells all we need to know.
3. FT3 doesn't really tell you anything more than total T3.
4. FT3 isn't necessary if you know total T4.
5. FT3 isn't necessary if you know FT4.
6. FT3 is not very accurate.
7. Your insurance won't cover it.
8. Can't do anything for FT3 separately, so no need to order the test.
9. It's too expensive.
So you were given excuse no. 9 on my Typical Excuse List. LOL When they told you that, how much money came into your mind? Probably hundreds of dollars, I imagine.
Have a look at this site of a company that will do the testing directly for you. Some of our members have used them and confirm that it worked fine. If you look over several pages of tests, you'll see that a TSH test costs $40. A Thyroid Panel II with TSH, free T4 and free T3 costs $85. So I guess that means that a FT3 test by itself costs about $20-25. Really expensive, huh?
http://www.healthcheckusa.com/lab_tests/Thyroid_Screenings/STTM_Basic_Thyroid_Function
I think that whenever they don't agree with the need for a test they just throw out some lame excuse. Now of course it is possible that her FT3 is in the upper part of its range and is just fine, but I'm positive that you would like to be sure of her FT3 level. As noted in the link I gave you, "Free T3 measures the free, unbound levels of triiodothyronine in your bloodstream. T3 is the active thyroid hormone, also called triiodothyronine, and can be the most important lab you will do. Free T3 is considered more accurate than Total T3. Free T3 is typically elevated in hyperthyroidism, and lowered in hypothyroidism.'
So don't accept that excuse, just insist on it and don't take no for an answer.
1.You don't need it.
2. TSH tells all we need to know.
3. FT3 doesn't really tell you anything more than total T3.
4. FT3 isn't necessary if you know total T4.
5. FT3 isn't necessary if you know FT4.
6. FT3 is not very accurate.
7. Your insurance won't cover it.
8. Can't do anything for FT3 separately, so no need to order the test.
9. It's too expensive.
So you were given excuse no. 9 on my Typical Excuse List. LOL When they told you that, how much money came into your mind? Probably hundreds of dollars, I imagine.
Have a look at this site of a company that will do the testing directly for you. Some of our members have used them and confirm that it worked fine. If you look over several pages of tests, you'll see that a TSH test costs $40. A Thyroid Panel II with TSH, free T4 and free T3 costs $85. So I guess that means that a FT3 test by itself costs about $20-25. Really expensive, huh?
http://www.healthcheckusa.com/lab_tests/Thyroid_Screenings/STTM_Basic_Thyroid_Function
I think that whenever they don't agree with the need for a test they just throw out some lame excuse. Now of course it is possible that her FT3 is in the upper part of its range and is just fine, but I'm positive that you would like to be sure of her FT3 level. As noted in the link I gave you, "Free T3 measures the free, unbound levels of triiodothyronine in your bloodstream. T3 is the active thyroid hormone, also called triiodothyronine, and can be the most important lab you will do. Free T3 is considered more accurate than Total T3. Free T3 is typically elevated in hyperthyroidism, and lowered in hypothyroidism.'
So don't accept that excuse, just insist on it and don't take no for an answer.
Sorry for delay. It took the geneticist some time to phone me back.
TSH is 1.87
FT3 not tested
FT4 1.3
I asked about the FT3 and was told that it's an expensive test.
RJ
TSH is 1.87
FT3 not tested
FT4 1.3
I asked about the FT3 and was told that it's an expensive test.
RJ
Hey grimel.
About the symptoms. I'm not really sure if many apply to her. She does complain when it's cold and insist the air conditioner is turned off.
Reading the list, it's hard to say, some symptoms are very specific like fingernails being brittle and hair loss, others are too general.
She is definitley not a couch potatoe but, all my girls would love to play video games all day.
As to her mental functioning, she gets good grades.
Anyway, I think I will have to "be aware" of symptoms and keep my main focus on her levels.
I will try to push for the FT3 as well.
RJ
About the symptoms. I'm not really sure if many apply to her. She does complain when it's cold and insist the air conditioner is turned off.
Reading the list, it's hard to say, some symptoms are very specific like fingernails being brittle and hair loss, others are too general.
She is definitley not a couch potatoe but, all my girls would love to play video games all day.
As to her mental functioning, she gets good grades.
Anyway, I think I will have to "be aware" of symptoms and keep my main focus on her levels.
I will try to push for the FT3 as well.
RJ
The thyroid meds won't destroy the thyroid, the Hashi's does that. I think a specific answer about the height question would require some research. In general I think that whatever is done to tune up her endocrine system will be beneficial overall.
This discussion recalled an example of a young boy that was in the very low end of the range for height and weight. He was growing, but slowly, and was way behind most of his classmates, with many resultant problems. A specialist had the boy's wrist x-rayed and then looked at the growth plate area and determined that he would be what they called a "late bloomer". They expected that his normal growth spurts would be delayed, but that eventually he should achieve his expected height. As an alternative, he was given several treatments of testosterone, and it worked like a charm. Not sure if that really relates but I thought it was an interesting example of what can be determined and that things can be done.
TSH and FT4 are indicators, but not adequate for determining meds. FT3 is a better indicator, since FT3 is the most active thyroid hormone and you really need to know the level. Symptoms are an even better indicator. Acceptable levels for FT3 and FT4 would be those levels that relieve symptoms. Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range. I imagine that treating your daughter clinically will be a bridge too far for your doctor, so as an alternative, maybe you can at least persuade the doctor to target keeping her FT3 and FT4 at the midpoint of their so-called "normal" ranges, and see how that works for her.
This discussion recalled an example of a young boy that was in the very low end of the range for height and weight. He was growing, but slowly, and was way behind most of his classmates, with many resultant problems. A specialist had the boy's wrist x-rayed and then looked at the growth plate area and determined that he would be what they called a "late bloomer". They expected that his normal growth spurts would be delayed, but that eventually he should achieve his expected height. As an alternative, he was given several treatments of testosterone, and it worked like a charm. Not sure if that really relates but I thought it was an interesting example of what can be determined and that things can be done.
TSH and FT4 are indicators, but not adequate for determining meds. FT3 is a better indicator, since FT3 is the most active thyroid hormone and you really need to know the level. Symptoms are an even better indicator. Acceptable levels for FT3 and FT4 would be those levels that relieve symptoms. Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range. I imagine that treating your daughter clinically will be a bridge too far for your doctor, so as an alternative, maybe you can at least persuade the doctor to target keeping her FT3 and FT4 at the midpoint of their so-called "normal" ranges, and see how that works for her.
Also, I read on the lab sheet only testing for TSH and FT4 no mention of FT3. But, maybe the TSH and FT4 info should help.
What levels would be acceptable for her anyway?
She weighs about 50lbs.
RJ
What levels would be acceptable for her anyway?
She weighs about 50lbs.
RJ
Thank you gimel for sticking with me. I called the geneticist today to confirm that they recieved the lab, they acknowledge they did but this time I did not get to speak to the doctor.
When I spoke to her last, I almost detected an attitude when I said that all I wanted was her TSH, FT3 and FT4. Her tone seemed maybe dissaproving, not sure. She may just have been tired. Or it could be that she thinks I have no faith in her. I got a little nervous and complimented her saying I thought she was an excellent doctor. Didn't know what else to say.
Anyway, if she does feel that way, then I may have to seek another. I'm not going to make any rash and quick decisions now and I feel my own research should not be a problem.
So far, as I see it, your advice has been in tune with hers, so it may be that I need to start her off sooner on the thyroid med. But, I still have many unanswered questions.
I hold the most value in what she says as she is the doctor. But, this is not a game. I want to be certain of all the ill effects before I commit my daughter to a lifetime of required pills.
Since I have the time now it seems only logical that I should do as full an investigation as possible.
I realize in your reply you where pointing out that the autoimmune disease eventually destroys the thyroid.
But, that does not answer if the drug also destroys the thyroid. By making it weaker and weaker till it is non functioning.
But, there is another issue. Her height. What I wonder is if I put her on the drug early will it help her gain some height? Is it possible?
RJ
When I spoke to her last, I almost detected an attitude when I said that all I wanted was her TSH, FT3 and FT4. Her tone seemed maybe dissaproving, not sure. She may just have been tired. Or it could be that she thinks I have no faith in her. I got a little nervous and complimented her saying I thought she was an excellent doctor. Didn't know what else to say.
Anyway, if she does feel that way, then I may have to seek another. I'm not going to make any rash and quick decisions now and I feel my own research should not be a problem.
So far, as I see it, your advice has been in tune with hers, so it may be that I need to start her off sooner on the thyroid med. But, I still have many unanswered questions.
I hold the most value in what she says as she is the doctor. But, this is not a game. I want to be certain of all the ill effects before I commit my daughter to a lifetime of required pills.
Since I have the time now it seems only logical that I should do as full an investigation as possible.
I realize in your reply you where pointing out that the autoimmune disease eventually destroys the thyroid.
But, that does not answer if the drug also destroys the thyroid. By making it weaker and weaker till it is non functioning.
But, there is another issue. Her height. What I wonder is if I put her on the drug early will it help her gain some height? Is it possible?
RJ
It is not unusual to find out belatedly that the tests you wanted were either not requested, or the lab people drawing blood, just operated on automatic pilot and set up the usual tests, not what you really wanted. To avoid this, I've started verifying what tests have been requested on the lab sheet , and then I make sure the lab people are aware of that.
Hello again. It's Monday the following day and I called. Seems the lab did not send the results, so I had to call up Quest diagnostic and they are faxing results to the doctor.
A minor delay. Also looking at the lab order sheet (they handed it back to me, maybe they where not suppose to..?) only TSH and free T4 test ordered.
RJ
A minor delay. Also looking at the lab order sheet (they handed it back to me, maybe they where not suppose to..?) only TSH and free T4 test ordered.
RJ
With Hashi's the antibodies keep attacking the thyroid glands, over some period of time, until the thyroid glands are destroyed. So it is not the drug, it's the antibodies.
During the destruction phase, meds have to be gradually increased, to offset the loss of natural thyroid production. This will require monitoring of her symptoms and also regular blood testing. Personally, I think the most difficult part is having a doctor that understands all this and is willing to treat her clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Remember that FT3 and FT4 test results that are just within the low end of their ranges is frequently inadequate to relieve symptoms. So don't ever let a doctor convince you that results anywhere within the ranges are adequate for your daughter. Symptom relief should be all important, not the test results.
During the destruction phase, meds have to be gradually increased, to offset the loss of natural thyroid production. This will require monitoring of her symptoms and also regular blood testing. Personally, I think the most difficult part is having a doctor that understands all this and is willing to treat her clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Remember that FT3 and FT4 test results that are just within the low end of their ranges is frequently inadequate to relieve symptoms. So don't ever let a doctor convince you that results anywhere within the ranges are adequate for your daughter. Symptom relief should be all important, not the test results.
One other basic question.
Am I correct in my interpretation that the drug levothyroxine would eventually cripple the thyroid gland.
Much like that of some drug like insulin, once your on it you have to stay on it or you die, true..?
I understand that the autoimmune disease eventually wins
With her other condition Turners, she can be on growth hormones (hgh) and it is possible that she can be removed from them without consequence. (So far as to what I have read).
Thanks for your help.
RJ
Am I correct in my interpretation that the drug levothyroxine would eventually cripple the thyroid gland.
Much like that of some drug like insulin, once your on it you have to stay on it or you die, true..?
I understand that the autoimmune disease eventually wins
With her other condition Turners, she can be on growth hormones (hgh) and it is possible that she can be removed from them without consequence. (So far as to what I have read).
Thanks for your help.
RJ
Thanks Ftb and Gimel. I will have the test done and see if I can insist on having test results for TSH, FREE T3 and FREE T4 (not total free t3 and total free t4).
My daughter's geneticist did express desire to start her earlier as to avoid complications. But she also stated that I had some time to decide and monitoring in mean time. She did have a few bloodtest so the info may already be there.
I will write back after I consult with her. I will have to wait till monday.
RJ
My daughter's geneticist did express desire to start her earlier as to avoid complications. But she also stated that I had some time to decide and monitoring in mean time. She did have a few bloodtest so the info may already be there.
I will write back after I consult with her. I will have to wait till monday.
RJ
One very important thing for you to note is that just because thyroid test results were within the "normal" range does not mean that they are okay for your daughter. Since your daughter has already been diagnosed as having Hashi's, there are a couple of other thyroid tests that would be very important to get done. These would be the free T3 and free T4 tests (FT3 and FT4).
Most of the thyroid hormone in our bodies is bound up with protein and thus inactive. Only the small portion that is free of protein is biologically active. Of the active portion, FT3 is the hormone that largely regulates metabolism and many other body functions. Studies have shown that FT3 also correlated best with hypothyroid symptoms. The function of FT4 is mainly as a storage hormone, available to be converted to FT3. FT4 levels also triggers a hypothalamus/pituitary reaction to produce TSH (thyroid stimulating hormone), which stimulates thyroid glands to produce thyroid hormones.
Hope I haven't lost you with all this. Just wanted to give you a thumbnail sketch of what goes on. When doctors test for thyroid issues, they typically test for TSH and then some forms of tests for T4 and T3. Many doctors believe that TSH is all that is necessary, but this is incorrect. TSH is totally inadequate as the sole diagnostic for thyroid issues. The best tests to run as a start, and the ones you should be insisting on with the doctor, would be free T3 and freeT4 (not total T3 and total T4), along with TSH. Even with these tests, doctors frequently will interpret any FT3 and FT4 results that are within the reference ranges as being okay, nothing further needed. This is also incorrect because the ranges are far too broad. I won't get into the long explanation of why, but many of our members report that for them symptom relief required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range. I know you won't remember all this right away, so I just want to be sure you have a record of this info, so that you can assess whether you are getting the right interpretation from the doctor.
Another thing to know is that many doctors don't want to start medicating a Hashi's patient until symptoms really start to occur. This usually results in significant symptoms before the meds start to relieve symptoms. Some doctors like to start earlier with meds. Here is a link on that.
http://thyroid.about.com/od/hypothyroidismhashimotos/a/preventative.htm
I want to encourage you to learn about Hashimoto's and to continue to utilize Forum members for information and support. When you get additional test results, please post them, along with reference ranges shown on the lab report, so that members can help interpret and advise further.
Most of the thyroid hormone in our bodies is bound up with protein and thus inactive. Only the small portion that is free of protein is biologically active. Of the active portion, FT3 is the hormone that largely regulates metabolism and many other body functions. Studies have shown that FT3 also correlated best with hypothyroid symptoms. The function of FT4 is mainly as a storage hormone, available to be converted to FT3. FT4 levels also triggers a hypothalamus/pituitary reaction to produce TSH (thyroid stimulating hormone), which stimulates thyroid glands to produce thyroid hormones.
Hope I haven't lost you with all this. Just wanted to give you a thumbnail sketch of what goes on. When doctors test for thyroid issues, they typically test for TSH and then some forms of tests for T4 and T3. Many doctors believe that TSH is all that is necessary, but this is incorrect. TSH is totally inadequate as the sole diagnostic for thyroid issues. The best tests to run as a start, and the ones you should be insisting on with the doctor, would be free T3 and freeT4 (not total T3 and total T4), along with TSH. Even with these tests, doctors frequently will interpret any FT3 and FT4 results that are within the reference ranges as being okay, nothing further needed. This is also incorrect because the ranges are far too broad. I won't get into the long explanation of why, but many of our members report that for them symptom relief required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range. I know you won't remember all this right away, so I just want to be sure you have a record of this info, so that you can assess whether you are getting the right interpretation from the doctor.
Another thing to know is that many doctors don't want to start medicating a Hashi's patient until symptoms really start to occur. This usually results in significant symptoms before the meds start to relieve symptoms. Some doctors like to start earlier with meds. Here is a link on that.
http://thyroid.about.com/od/hypothyroidismhashimotos/a/preventative.htm
I want to encourage you to learn about Hashimoto's and to continue to utilize Forum members for information and support. When you get additional test results, please post them, along with reference ranges shown on the lab report, so that members can help interpret and advise further.
You should post the Free T3 and FreeT4 with the ranges provided so members can see where your daughter is at with her thyroid, Also, since having Hashimoto's an auto-immune disease, that there is no cure, do to the fact that they do not understand what it is that causes the body's defense system not to recognize the thyroid, bit I think if you post the lab results you will get a quicker and more resposes to your post, we are all thyroid sufferers here and not MD's but some here have studied the diseases and treatments and could help. I know that it has been said Selenium does assist in the absorption and conversion from T4 to Free T4 and Free T3, but I have no other info ablut it that I could offer. Please re-post and someone will respond that may help. Good Luck FTB4
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