i am new here, but the problem of my son's thyroid has been going on since 2 years.
first at birth his tsh readings were high, but t3,t4 are normal
these values were total unknown to us , i dont know why?
accidentally , 2years ago, he got some bad flu then infection that went to the kidney and caused blood in his urine,
then doctors found in his file the old tsh high reading and asked for the re-test , and since then he has been having thyroxine,
he is normal with everything, had delayed talking and walking, but now he is coping up , he only has some stuttering, everything else is perfect with him.
i noticed his eyes small opening , as if he is sleepy or tired, i know it is sometimes linked to thyroid, so i got him make the tests again on 28/9 and these are the results,
T3: (4.27) N.R. (1.80-4.60)
T4: (1.48) N.R. (0.71-1.85)
TSH: (6.2) N.R. (0.27-5.00)
he takes 25micrograms 3 days of the week
and 50 micrograms 4 days of the week
his doctors say he is ok and no need to increase the dose of the levothyroxene he is taking ?
i have a problem with the sleepy eyes he has, and the puffy hands
thank God for his normal active and mental state
but i dont know if this is enough? is there anything else i can do to help him?
given that his eye opening was much better on 3 years exactly before he takes the medics, he is now 5 , but i see his eyes look badly sleepy
any idea or opinion will be highly appreciated
thanks to all
Last edited by nisreen1811; 10-31-2011 at 06:11 AM.
The following user gives a hug of support to nisreen1811: lisa789 (12-14-2011)
Are any of his doctor's pediatric endocrinologists? If not, I would look for one, and travel to one if necessary. I don't know anything about hypothyroidism in one so young, but I would be suspect of such a high tsh when his other levels don't look so bad---I would be worried about a pituitary issue and ask a specialist to make sure there's no issue with that.
The Following User Says Thank You to Reece For This Useful Post: nisreen1811 (10-31-2011)
Such a young one--I wouldn't even venture to guess---at that age it's so important to use a pediatric specialist---and that's what you are going to do. A good specialist will know the right ranges and issues that come up with that age and size. They can have so many different issues and reasons for those issues in children.
I only suggested to ask them about pituitary that because usually, tsh is a pituitary hormone, and if tsh is high, and the other levels are normal or high, it could possibly be a pituitary issue and it might be a good idea to ask and see if that's ruled out or not.
why did results came like this?
tsh is still very high, t4 high normal and t3 very high
yet these past 7 weeks he was happy and energetic and active, his eyes opening got slightly better
i feel very sad , most of the time i cry for him
i have this miserable feeling that his thyroid problem did something bad to his IQ , compared to his two sisters , it is just heartbreaking , some times i think his thinking is OK with his age , but sometimes not . every doctor i met said sub-clinical doesn't cause anything to IQ, it did not harm him at all , but from what i read i am very disappointed with what doctors said , but his t4 was always in the upper half , always
he has constipation sometimes, choking with food (hard to swallow or as if something is stuck in your throat) , and always looks like he is tired and needs more sleep, sometimes he has shaky hands, but his handwriting is good for his age, it shows when he eats soaps not too bad, it is mild, but i see it , he also has some memory problems, he forgets some names , but not situations
please i need to ask a burning question ,
if a baby , age 2 years was given -by mistake - levothyroxine, does this mean, that even if his thyroid gland was functioning good, this mistake will cause damage, and he will need the medication for life? (meaning he was normal and the mistake of getting medication caused his hypo?)
i ask this because when my son was tested for hypo, both times he had acute infections , meaning that TSH will be higher than his actual value
i don't know when i get to the doctor what would he say about his test,
my husband is very resisting to doing anything but the 6-month regular test where they always say it is all right, get back after 6 months
i go for private practice doctor against his father will
please help me what to do, and what is the meaning of his labs?
i will be very grateful for any help
Last edited by nisreen1811; 12-12-2011 at 01:16 AM.
from what i read over here and other sites
the level of TSH should be settled by 6 weeks, meaning that his tsh will not be lowered more on the high dose of extra 25 per week
the dose is only extra 25 per month !
which means even higher tsh than 5.74 !
then he will keep high tsh , normal high t3, t4 in the BEST CASE SCENARIO !
reasons for this have two options
1. pituitary tumor secreting tsh
2. sensitivity to thyroxine hormone
the potential for the appointment is the first two weeks of January, with a reputable endo,
i need to get ready to hear all the blah about having a 5.74 normal tsh level
i need to dig and read more,
there is a good reading on my thread, but no one seems to have a clue
please dear God help me and my baby through this
The reason you aren't getting many responses is because we are just laypeople who use the internet to gather information and pass it on. There is very little written on the net about pediatric hypothyroidism. Believe me, I've looked.
The only thing I find - from a very reputable site that I can't name - is that, in pre-pubertal children, a higher-than-normal TSH value is acceptable when the FT4 level is in the highest part of the normal range in association with the elevated TSH. The presumption is - if the TSH is high-normal, but the FT4 is not, the FT4 needs to be higher. If that can only be accomplished by lowering the TSH, then the TSH should be lowered.
It appears that your son's labs may be exactly like the acceptable ones I posted above. As long as his T4 [If that's the free T4 level you posted.] is in the highest part of its range, it should be adequate.
The following user gives a hug of support to midwest1: nisreen1811 (12-15-2011)
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millions of thanks and kisses and hugs
thank you dear midwest1
i am in a nightmare thinking of the tumor of the pituitary
thank you, you gave me quite a relief , i needed that,
but what is the reason for his symptoms
sleepy eyes, tireness, slow reactions, forgetness?
i need to dig these out
i scheduled two appointments with two endos when his next labs are ready , with private practice doctors, without his dad's knowledge , these two are the best here in Jordan, i hope they can help more,
i have a herb too called costus, it is known in our culture for thyroid issues, but i didn't use it yet. i am waiting till his results get steady values, then i am starting it slowly to see if it helps and keep doing labs every 6 weeks , this is my current plan
i will not let my son suffer anymore, I'm already late in this
every time i tell my husband our son is not OK, he screams angrily that i am saying he is retarded , i am not saying that and i don't want to think this way or talk this way , the only thing i wanted to do is to discuss how to make our baby feel and live better, i know he has good intelligence , he can read and write and do math in the average of his peers, i ask about him at school and his teacher gave him 85%, he stutters , sadly yes, but he was deaf for whole two years, and the reason is this careless dad and a scary mom , too sad, but THIS WILL END .
i love my son, i know he is not brilliantly intelligent, but i know and feel for sure that he needs more treatment than he is having now, and sure if he got the proper treatment, he will be doing better and stronger and smarter in his life
i know this for sure, and i wont be scared away again , by an ignorant weak father.
thank you midwest1 , you have been a great help <3 xoxoxo
Last edited by nisreen1811; 12-15-2011 at 04:14 AM.
Well... Your son is obviously a bright child. If he were seriously hypothyroid, that probably wouldn't be the case. You need to consider that whatever symptoms you see may be related to some other condition.
Does he eat well? Children who won't eat vegetables or fruit can become constipated easily. Does he sleep well? Children need a regular schedule of restful sleep in an amount appropriate to age. My own two always picked up some infection whenever their sleep schedule got off track, like when they stayed up late during the holidays. Stuttering is often the sign of a bright child whose mind moves faster than he can express with his words. Allergies are common reasons for children to look sick or tired, especially milk allergy. Has he been tested for those?
I frequently say that people shouldn't be quick to ascribe every single symptom to their thyroid disease. If their hypoT is optimally treated, but they have symptoms remaining, they need to start looking for other causes. Not every symptom that can be caused by low thyroid always is caused by it.
I hope that helped a little. Good luck to you and that sweet boy.
Last edited by midwest1; 12-15-2011 at 02:19 PM.
The following user gives a hug of support to midwest1: nisreen1811 (12-16-2011)
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i have a hard copy of all his labs since birth
all of them , ALL , have free t4 values in the upper third, only on in the upper half, this proves and assures his hypo is not there even
does this mean he should not have thyroxine treatment in the first place
and his symptoms? delays in talking and walking? these could be natural to every child on his own pace
he has no goiter and no antibodies ?
i am very confused that the treatment in the first place is a mistake
but please i need to repeat a question that i put previously here:
if a baby was given thyroxine hormone by mistake , does this destroy his thyroid function and makes him need hormone replacement forever?
did my baby need thyroxine back then or not?
i know i feel very bad seeing him suffering and not knowing what to do
maybe in the endo appointment i will suggest weaning him off the thyroxine slowly and follow up his labs to be in the upper third only and fix the dose there?
but then what to do with other symptoms?
maybe then the costus herb?
or vitamin A?
i will need to ask the endo for a good supplement
lots of things to think and read waiting for the next lab results.
thank you midwest1 again, you helped me indeed
regarding eating, he eats well, maybe sleeping is less than his needs because of his two very active sisters, plus his eyes and nose are allergic to dust, sand and pollen.
I don't know whether he should have started treatment or not. Thyroid treatment is more of an art than a science. I can't second-guess the doctors who were there at the time when I wasn't. But I do know that if his thyroid gland is actually healthy and not in need of support, it will recover its function if the thyroxine is withdrawn. It's a myth that unneeded thyroxine will destroy an otherwise healthy gland's function. It just has to be withdrawn gradually; then gland will resume it's normal pace.
I don't have enough knowledge to recommend any herbs or vitamins. I will urge you to be cautious about giving him anything experimentally. Even though those things are considered "natural", herbs aren't actually "natural" to the human body and have the potential to do far more harm than good. After all, bella donna and foxglove are "natural", but you wouldn't want to ingest them!
I also want to caution you about being overly concerned with the child's health. There's a fine line between being properly vigilant and imagining things not there. Mothering is such a complicated job! Hugs to you.
Last edited by midwest1; 12-17-2011 at 09:29 AM.
The following user gives a hug of support to midwest1: nisreen1811 (12-18-2011)
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i set an urgent appointment with pediatric endo today, my husband is traveling and i will use the time he is not here
finally i am taking him, i am very happy , i will suggest the withdrawal to the doctor, they say she is an excellent doctor, i hope so, or better, i hope she treats him quite well, the way he needs.
regarding the mothering job, i know it is driving me crazy, i am paranoid , i am dying in every day of life , i have been very depressed lately, i think i can never rest or take a break , being a mother, i cry too much every day, this is an other problem
anyway i hope she approves and monitors the withdrawal if she saw it to be possible
many thanks midwest1
you are always a great help to me
Last edited by nisreen1811; 12-18-2011 at 12:37 AM.
hi dear midwest 1
we went to the pediatric endo and she said to get back to the raised dose of
50 microgram 4 days
25 microgram 3 days ,
retest after 3 weeks and get back to her
she asked to for chromosome analysis , she said it is a possibility of having some genetic syndrome, but it is not important and expensive,
no matter i will do that and tell you, please i ask you personally to pray for my son that the result will be normal , i am scared to death already
i need to ask you, i told her that t3 is high , wouldnt that make a damage ? she said no, and she doesnt even want to make the t3 test next time, and it doesnt matter if it is high or low, she needs only t4 and tsh values, her target to get his tsh to 3 or less disregarding whatsoever value of t3 !
so what do you think about this, are there no harm of extra t3 in the body ? as long as t4 is normal?
i am sorry to ask all these questions, but more, i deeply need a pray from your heart to my little boy
thank you again and again
Last edited by nisreen1811; 12-20-2011 at 05:04 AM.
The following user gives a hug of support to nisreen1811: lisa789 (12-21-2011)
I'm not smart enough to second-guess any ped endo, but I rely on intuition and experience to know whether an MD is a good one. It sounds to me like yours is a good one whom you can trust. That means everything. Try to develop faith in her and follow her lead from here.
Of course! I'll keep both you and your sweet boy in my most positive thoughts and prayers.
The following user gives a hug of support to midwest1: nisreen1811 (12-21-2011)
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