no snappy song lyrics to introduce this topic. it is one that is near and very dear to my heart, though. in september, my daughter( who is hypothyroid) had her first baby, a beautiful 6lbs.7oz boy. she took wonderful care of herself during her pregnancy- exercise, good nutrition and monthly trips to our endocrinologist for thyroid blood work. everything looked good. my daughter had to have an emergency c-section delivery, but she and the baby did well and there were no problems associated with the procedure.
as part of newborn screening now, this was not done when my two children were born, my grandson was tested for congenital hypothyroidism. this was done on their last day of hospital stay, and we had no reason to expect anything was amiss. my daughter got a call from the hospital lab( sort of unusual, i think) and they said to bring the baby back to the lab IMMEDIATELY to retest for hypothyroid disease. it seems that his TSH was 155! yes, 155. i did not accidentally put an extra 5 in there. the second time they tested him( we were all hoping for lab error) it was so large that they could not measure it. so, at 1 week of age, my grandson was started on ( remember he only weighed about 7 pounds at this time) a dose of 37.5mcg of synthroid! after a few days, he was retested and his TSH had dropped dramatically to around 7.
my daughter took him back to get his blood work done again after about a week and a half on the 37.5mcg dose ,because he was exhibiting some HYPERthyroid symptoms( excessive crying, irritability,extreme hunger- even after nursing pretty much non-stop) . after another round of blood work, they reduced his dosage of the synthroid to 25mcg- which is his dose now, at about six weeks of age. his last blood work is as follows: TSH is suppressed at 0.1 free t4 is a little high at 1.92 and total t4 is 10 which is great, according to the physician. oh, i might add that just as soon as the pediatrician saw his initial blood work, a pediatric endocrinologist from Duke children's hospital was called in. my grandson has seen the pediatric endos several times. one of the doctors emails my daughter on a fairly regular basis, and my daughter can get in touch with her anytime she needs to. also, the doctor has written a standing blood work order so that if my daughter ever feels like my grandson is acting HYPER or HYPO she can just take him to the lab and have his blood drawn. the results are back in a few hours, not days, and the doctor gets the results, makes a change if necessary, and emails my daughter back. i can not say enough about how good these pediatric endocrinologists have been!
now, why is this important? well, if a child is diagnosed with congenital hypothyroidism at birth and treated within the first month of life( my grandson was treated at one week of age) then all is well. children who are diagnosed early have an excellent prognosis. i should add here that the dose of thyroid supplement must be correct- it has to a large enough dose to be effective. the baby may be somewhat hyperthyroid now, and will be a little slow to put on body fat. my grandson is in the " normal" range for head circumference and length, but has a little weight catching up to do. at six weeks of age, my grandson weighs 9 pounds, 10oz. which i think is great. he is starting to put on a little baby fat that is so cute, but i do not think that he will ever be a chunky baby. if a baby is NOT diagnosed at birth, or before say, one month of age, the baby will have mental and physical retardation.
if you read an article on congenital hypothyroidism in infants( there is a really good one from the american academy of pediatrics- i can send a link if anyone is interested) it is stated that the overall incidence is from 1 in 3000 to 1 in 4000 births. third world countries, who do not screen for CH or may have nutritional deficiencies of selenium,iron and most importantly,iodine have a higher incidence of CH. the ratio between male and female babies is 1 to 2.
what causes CH? well, there are two kinds of CH- permanent( the most common) and transient. permanent CH is most commonly caused by a defective or abnormal development of the thyroid gland( also known as dysgenesis) about 10% of babies with CH can not synthesize or secret thyroid hormone. there may also be pituitary or hypothalamus problems.
in transient CH, the causes may be insufficient intake of iodine by the mother, TSH receptor blocking antibodies in a pregnant woman who has an autoimmune thyroid disease, or if the mother takes antithyroid drugs( if she is hyperthyroid) while pregnant.
the standard of practice, now anyway, is to treat the infant until he/she is about 3 years of age. at that time, the thyroid hormone can be stopped or tapered down, and a scan can be performed to determine the state of the thyroid gland. if it is discovered that the child's thyroid gland is ectopic or absent, then a diagnosis of permanent CH is established, and the child will be treated for hypothyroidism for life.
it is important to understand that while more serious childhood diseases certainly occur, CH must be treated early, taken seriously by parents and health care providers, treated adequately, and monitored closely. having your first baby, having to have a c-section delivery and finding out that your baby has CH has been quite challenging for my daughter as it would be for anyone! but i am so proud of my daughter and son-in-law for the way they have dealt with this issue and for the love and care that they give to my grandson every single day. being informed is always important for good health/good outcomes. my daughter found a website, recommended by our endocrinologist, which is written by a woman who has two sons- BOTH with CH! what are the odds of that happening? this woman writes intelligently, honestly and provides good information. she has met with my daughter ( oddly enough they only live about 15 minutes apart) and was able to answer some of her questions. my daughter was able to see that her sons are intelligent, functioning children and that was very reassuring. if anyone is interested, i can message you the website on infants/children with CH.
Wednesday, October 30, 2013
Sunday, October 13, 2013
the results blog, or what i have found out since my last six months round of tests........
as previously mentioned in other blogs, i have had thyroglobulin antibodies. this made my blood work pretty useless. why? to refresh, the antibodies can cause false NEGATIVE results. this means while you may want to party, your body is saying, " hey, wait a minute!" my first blood work, right after my surgery, RAI, etc, showed that i had thyroglobulin ( not good- only thyroid cells make thyroglobulin, and if your whole thyroid is gone,technically the only cells that can make this now are thyroid cancer cells) AND i had thyroglobulin antibodies.
my next six month blood work showed that the thyroglobulin had packed up and moved out of town, hopefully, but the antibodies were still hanging around. even though my ultrasounds- which i have every six months as well- showed no monsters growing in my neck area, i was still concerned that there was thyroglobulin somewhere in my body, and the antibodies were covering for them. this pattern continued UNTIL this time! finally, after three years of worry, my antibodies are negative! oh happy day :0 . truly, i feel that for the first time since i have started my thyroid journey, i can put some of this behind me.
my endocrinologist's nurse gave me a copy of my labs from the previous week ( i always request a copy for my records) while i was waiting on my doctor to come into the exam room. the nurse had the biggest smile on her face when she handed them to me. she did not say anything, just turned and left. i thought this was odd. first, i am a pain in the butt patient- i ask a lot of questions,etc, so i do not think she likes me very much, boo hoo. secondly, well, this nurse does not smile very much. at any rate, i started going over the values- here is a recap for those who are interested:
TSH: 0.007 uIu/ml
T4 free (direct) : 2.04ng/dL
T3, free: 3.0pg/ml
Thyroglobulin ( ICMA) less than 0.1ng/ml
Anti-thyroglobulin antibodies: less than 1.0IU/ml ( negative)
i can not tell you how many times i read and re-read that last number! i was almost in shock. the anti-thyroglobulin antibodies are supposed to go away sometime after surgery. mine had stuck around for 3 years! when my doctor came in, she said, " well, did you see?!" i asked her if this happened a lot, never,etc. and she said that it happens sometimes. she said that she likes to wait a while before ordering a PET scan, or other tests to see if the anti-TGA go away on their own.
i think that there is a lot we do not understand about thyroid cancer. did it take that long for the RAI to work? did my immune system, after the burden of fighting the thyroid cancer was gone, finally recover enough to fix this on its own? my doctor could not answer this, nor can i. hopefully we will understand more about this in the future...
just a few comments on my other lab values. my endocrinologist wants my TSH to be essentially zero for five years. this is a " just in case" measure( do not want to be stimulating any rogue thyroid cancer cells that might be hanging out somewhere) . as long as i do not exhibit hyperthyroid symptoms this will mean taking a larger dose of my thyroid hormone than i will get after the 5 year period.
my T3 is about in the middle( range for this lab is 2.0 to 4.4). this could be increased, or supplemented, by a drug called cytomel. it is pure T3. i have taken this in the past, but since i feel pretty good i have stopped the cytomel. it made me shaky and jittery, so i assumed that my T3 was too high when i was taking cytomel.
my T4 is too high.( range for this lab is 0.82-1.77). i have not been having any hyper symptoms, but i realize that heart palpitations could possibly occur with a high T4, so my doctor and i discussed it and we agreed to lower my thyroid dose a little. it is tricky- i need for my TSH to be zero, but my T4 not to be quite as high. i am sure that EVERYONE plays the" wiggle your thyroid medication game". not fun .i was taking 137mcg synthroid 4 days per week, and the 150mcg synthroid 3 days per week. i am going to reduce the 150 to one or two days per week. at some point, i may just take the 137mcg every day. i am not sure what that will do to my TSH if i do that, though. also, i get really tired, especially when i work a 6 out of 7 days work week/weekend. i count on the 150mcg to get me through saturday- which is a 11 hour day. bless my endocrinologist- she is pretty willing to let me figure this out, unless of course i have some heart palpitations, difficulty sleeping, shakey hands, etc. i am fortunate to have found an endocrinologist who not only looks at the labs, but more than that, considers how i am feeling before she prescribes. it took me going to at least FOUR doctors before i found one that i really liked. do not be afraid to switch doctors or get a second opinion, by the way, if you do not feel like you are getting the care that you need.
so happy, happy news! my endocrinologist is still holding me to the every six months testing. i am hopeful that next time my labs will be as good as this time. i feel like a gigantic weight has been lifted. perhaps, i can feel more like a 3 year cancer survivor rather than a 3 year cancer patient if that makes any sense.
my next six month blood work showed that the thyroglobulin had packed up and moved out of town, hopefully, but the antibodies were still hanging around. even though my ultrasounds- which i have every six months as well- showed no monsters growing in my neck area, i was still concerned that there was thyroglobulin somewhere in my body, and the antibodies were covering for them. this pattern continued UNTIL this time! finally, after three years of worry, my antibodies are negative! oh happy day :0 . truly, i feel that for the first time since i have started my thyroid journey, i can put some of this behind me.
my endocrinologist's nurse gave me a copy of my labs from the previous week ( i always request a copy for my records) while i was waiting on my doctor to come into the exam room. the nurse had the biggest smile on her face when she handed them to me. she did not say anything, just turned and left. i thought this was odd. first, i am a pain in the butt patient- i ask a lot of questions,etc, so i do not think she likes me very much, boo hoo. secondly, well, this nurse does not smile very much. at any rate, i started going over the values- here is a recap for those who are interested:
TSH: 0.007 uIu/ml
T4 free (direct) : 2.04ng/dL
T3, free: 3.0pg/ml
Thyroglobulin ( ICMA) less than 0.1ng/ml
Anti-thyroglobulin antibodies: less than 1.0IU/ml ( negative)
i can not tell you how many times i read and re-read that last number! i was almost in shock. the anti-thyroglobulin antibodies are supposed to go away sometime after surgery. mine had stuck around for 3 years! when my doctor came in, she said, " well, did you see?!" i asked her if this happened a lot, never,etc. and she said that it happens sometimes. she said that she likes to wait a while before ordering a PET scan, or other tests to see if the anti-TGA go away on their own.
i think that there is a lot we do not understand about thyroid cancer. did it take that long for the RAI to work? did my immune system, after the burden of fighting the thyroid cancer was gone, finally recover enough to fix this on its own? my doctor could not answer this, nor can i. hopefully we will understand more about this in the future...
just a few comments on my other lab values. my endocrinologist wants my TSH to be essentially zero for five years. this is a " just in case" measure( do not want to be stimulating any rogue thyroid cancer cells that might be hanging out somewhere) . as long as i do not exhibit hyperthyroid symptoms this will mean taking a larger dose of my thyroid hormone than i will get after the 5 year period.
my T3 is about in the middle( range for this lab is 2.0 to 4.4). this could be increased, or supplemented, by a drug called cytomel. it is pure T3. i have taken this in the past, but since i feel pretty good i have stopped the cytomel. it made me shaky and jittery, so i assumed that my T3 was too high when i was taking cytomel.
my T4 is too high.( range for this lab is 0.82-1.77). i have not been having any hyper symptoms, but i realize that heart palpitations could possibly occur with a high T4, so my doctor and i discussed it and we agreed to lower my thyroid dose a little. it is tricky- i need for my TSH to be zero, but my T4 not to be quite as high. i am sure that EVERYONE plays the" wiggle your thyroid medication game". not fun .i was taking 137mcg synthroid 4 days per week, and the 150mcg synthroid 3 days per week. i am going to reduce the 150 to one or two days per week. at some point, i may just take the 137mcg every day. i am not sure what that will do to my TSH if i do that, though. also, i get really tired, especially when i work a 6 out of 7 days work week/weekend. i count on the 150mcg to get me through saturday- which is a 11 hour day. bless my endocrinologist- she is pretty willing to let me figure this out, unless of course i have some heart palpitations, difficulty sleeping, shakey hands, etc. i am fortunate to have found an endocrinologist who not only looks at the labs, but more than that, considers how i am feeling before she prescribes. it took me going to at least FOUR doctors before i found one that i really liked. do not be afraid to switch doctors or get a second opinion, by the way, if you do not feel like you are getting the care that you need.
so happy, happy news! my endocrinologist is still holding me to the every six months testing. i am hopeful that next time my labs will be as good as this time. i feel like a gigantic weight has been lifted. perhaps, i can feel more like a 3 year cancer survivor rather than a 3 year cancer patient if that makes any sense.
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