Thyroid Disorders Community
born without a thyroid
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born without a thyroid

I am a single parent raising a little boy that was born without a thyroid. He is 5 years old and so far he is mentally up to par. He is a little on the small side. After reading some of these forums I am a little concerned about his future. We see a specialist and I do trust him. When my son was 3 days old the thyroid test showed his thyroid was underactive - the Dr. sat me down in his office and told me my son would be mentally handicapped. I can say without hesitation that as of right now this has not been the case. We just discovered 2 months ago that instead of an underactive thyroid my son was born without a thyroid at all. My fear is in the future that he may struggle with keeping up with learning and growing. My counselor suggested that I apply for social security for him. As a single mom we barely get by but we do. I guess before I consider applying now and putting the money away for the future if the time comes that we would need that money for him I was wondering if anyone else born without a thyroid recieved social security. I read on here that someone could not find any statistics on boys born without a thyroid graduating high school. I just put my son on the school bus for kindergarden on tuesday. I can't imagine him not graduating. If anyone has any information I would greatly appreciate it.
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125112_tn?1217277462
I have heard of this but am not up on the outcomes, for those born without.

This is what I think: have hope! Without unrealistice expectations. Just keep pluggin' along and do the best for your son, that you can. If he needs medical assistance, certainly don't feel like your standards are low. Certainly not! If medical intervention leads to a better quality of life, that's the point!

Secondly, if you need S.S.I. certainly do not feel bad for accepting it. That's what the program is for- those who genuinely need it! There's no loss of pride, there.

The doc will chime in and hopefully, those who understand this, will too. No doubt, you want to get an idea of possible outcomes for those born without a thyroid.

Best to you and your son.
~Kate
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125112_tn?1217277462
Whoop. I thought this was a Dr. forum. I think it'd be good if you could post to Dr. Lupo. I found early morning on the week-end the best (2 for 2).

~Kate
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Avatar_f_tn
There are some interesting comments about this condition from a previous thread, if you haven't already seen it: http://www.medhelp.org/forums/Thyroid/messages/254.html
It looks like some people do quite well, take heart! (if the link does not work, try searching "born without a thyroid" on Google)
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Avatar_f_tn
Born without a thyroid is like being hypothyroid and having the same difficulties and symptoms as hypothyroids.

If your child was treated early due to the newborn blood testing program and continues to receive proper treatment he should have normal growth and development.
However, if not treated early enough or didn't receive the proper amount of medication may have growth and development problems.

The most important issue for good health for your son is that he is getting thyroid hormone medication, at the correct dose and monitored on a regular bases by a pediatric endocrinologist. Normally Total T-4 and Free T-4 with TSH is done/tested, at invervial of 4-6 months. As children grow the does of thyroid medication needs to be gradually increased according to Lab results and the child's growth measurements.

It is almost impossible for people to get SS for thyroid conditions.  There is a prevision for special needs at school (or at work). Protecting Students With Disabilities Section 504 regulation requires a school district to provide a "free appropriate public education" (FAPE) to each qualified student with a disability who is in the school district's jurisdiction, regardless of the nature or severity of the disability. FAPE consists of the provision of regular or special education and related aids and services designed to meet the student's individual needs.
Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive federal funds from the U.S. Department of Education (ED). Section 504 provides: "No otherwise qualified individual with a disability in the United States . . . shall solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance . . . ."
ed.gov/about/offices/list/ocr/504faq.html  

I hope your son continues doing good.




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237249_tn?1211293998
Thank you for sharing your story with us, it is amazing what little ones do and they just seem to have miracles all around them. So good to hear a positive one here... I hope things continue to go well.
I have had experience with 2 people (both boys) born w/out thyroids. The one is my age, he is very mentally challenged and his family has spent his whole life (35 yrs) trying to figure out what to do to help him out. The other is a younger boy, he is about 20 yrs old now, and the Dr's knew before he was born that there was a problem so they were right on top of things. He did struggle a bit in school but kept up... graduated and has done well for himself. The only problem he ended up having and I don't know if it was thyroid related or not, but when he was about 12 he had a sudden issue with fluid on the brain and had to have a shunt put in... but has never had an ounce of trouble with that since.
I think that this day and age with all the technology and science and medicine we have your son has a greater chance of succeeding and doing well in the big picture. Sounds like he is just flourishing now and that is so awesome.
Best wishes to you! Glad to have you on our forum!!

Darla
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168348_tn?1379360675
I would think that since they know about his condition so early on that meds will replace the missing hormones .. similar as if he had a total thyroidectomy at early age.  I'm not a Doctor but if he has achieved so much on target at this age I can only think the future will hold similar results as long as he is under the care of a good endocrinologist!

My sister in law posted on the board back in Feb.  She had what was supposed to be a partial thyoridectomy and when they got in there found she only was born with 1/2 a thyroid!  What they thought was the other half of her thyroid on prior ultrasounds was actually the nodule that grew so huge it pushed thru to the other side and resembled a thyorid on the ultrasound!  I don't know stats on those born without or 1/2 a thyroid but early testing certainly improves the odds for on-target achievement/development for children these days vs. yrs. ago.

Cheryl
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Avatar_n_tn
ChitChatNIne, DarlaLOU, GravesLady, devushka, borninquistive

Thank you all for your comments. I was overwhelmed with the feedback - I will keep following up with his doctor and I think I willbe visiting this forum on a regular basis. I will keep you all posted on his condition.
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Avatar_n_tn
My cousin was born without a thyroid gland many years ago, he is 40 now I think, but he was 2 when they tested him and found his was missing. He is very intelligent, he made A's and B's in elementary school and a 4.0 in high school and college. He is a Reseach  Biologist of some sort working at the University Of Kentucky. So no I do not think that being born without a thyroid is a Prerequisite to assume any child will be slow, or mentally challenged in any way. Please just don't give up on him, not to say you ever would, and give him lot's of support and I think that with the right medication he will be fine.

Have a blessed day
Eva
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Avatar_n_tn
My name is Hazel,

I was born without a Thyroid.

I am 21 years old, have graudated from University with a 2.1 and am looking to start my own business as a freelance film editor.

As long as your son has regualr checkups on his height and weight and blood test every 6 months there should be no problem.

When I hit purberty my Thyroxine dosage increased, and then again when I got to University and became more womanly.

My levels pretty much stay the same and I am a size 12 (UK) normal human being - well - that's what they say...! Hahaha

I completely forget that I was born without a Thyroid most days and take tablets every day  that I get through the NHS. It is just a part of my life, takes 2 seconds to do.

Whever I feel drowsy or lethargic for longer periods of time - I perhaps go and check up with the docs, but mainly its just another ceck up.

I hope this helps

Hazel
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Avatar_n_tn
My daughter doesn't have a thyroid either. Found out day three also. She has been on levothyroxine ever since. She is now 7 healthy, happy, and smart. She does fine in school. She has just went thru a growth spurt this year- she's 4'3" but I am 5' and my husband is 6'3" so I think she is just taking after him in heigth. She can be quite emotional sometimes. She says somtimes she just feels like crying.I don't know if it's thyroid related or just being a kid?The specialist we have seen said it should not be a problem that to watch for when she hits puberty.    As long as you control the dose and he takes the meds everything will be what he needs. Your son should develope as he should.
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640774_tn?1223160227
i was born without a thyroid until i saw this site i thought it was virtually unheard of. i take thyroxine
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Avatar_n_tn
I was born without a thyroid and I am now 18. I take 125 mg of lethothyroxine a day. Although there have been some effects none of have really hindered my quality of life. The things that have affected me are delayed bone growth so I was normally the smallest child in the class, although I am now of average size, as well as impaired motor skills and hand eye coordination. My hand writing is below average but this does not affect me too much paragraph. The main thing to look out for is the child’s state of mind as being smallest in the class and other symptoms can lead to insecurity.
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Avatar_m_tn
Hi....

Im 28 yr male. I also have no thyroid. Born without. Back then it was rare, but now I go check online about it and realize Im not the only one. They also told my parents it was really rare for males, and that thier was a chance of me being handicapped! That ole speech from the doc can kiss my ***. I take what all you take to survive, levothroxine (levothyroxine) or whatever. I was  the tallest in my class in elementary, and I stayed thin threwout my life. I gained weight off and on when I hit puberty, takin diffrent doses but overall stayed the same weight. I dont really go for reg check ups even tho i should, but as of lately I did because for yrs I was on a dose where it was too low, or high, i cant remember, but they uped  my dose. Since then I lost extra weight and I been more myself. I suffered from anxiety from a young age too, maybe cuz of it??? Who knows, but since the dose I am on I had no anxiety attacks. I just hate how im thin! Im 178lbs, used to be up to 205lbs. Im been currently active all my life, playin hockey and soccer. Im well known to be good at these sports, and I enjoy it. So thier is nothing to worry about when havin no thyriod. Your as normal as anything. Take your meds and never mess around with it. Stay healthy.
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734073_tn?1278899925
Thanks for posting! My daughter is nine and also born without a thyroid gland. I'm glad to hear that you have done well other than the anxiety, which is probably related to your thyroid levels being off in one direction or the other. My daughter has never suffered from anxiety, but she has had many hypo. symptoms in the past when on Synthroid. I switched her to desiccated hormone (Nature-Throid) last spring and she is doing much better. She is the tallest in her class, however she is too heavy, but we are working on it. She had her first basketball game of the season last night and I was pleased to see her really running and she made 6 goals! Last year at this time she was having heart palpatations (PVC's) and was wearing a heart moniter during her basketball games. This was while she was on Synthroid. Happy to say that she no longer has this as her Freet3 is now higher in the range, which was obviosly her problem before. (Could not convert enough of the t4 med into the active t3). Now that she gets t3, and her thyroid hormone levels are kept higher in normal range w/ her TSH lower (under 1) she is feeling great again (no PVC's or other hypo health issues) and she's not hyper in any way! We just had to find the right med and the right level for "her" specific needs. Well thanks for the encouraging post. It really helps to hear how others are doing with their "thyroidless" life. Keep in touch....Anne
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Avatar_f_tn
my son was born without a thryriod 15 years ago we had a few problems with him being very active and fast he started to settle down at about 10 he went into pubeity very early 10 years old but what a cracking lad he, is is height is 5' 11" normal build not bad to say he was always under weight until he was about 11 years he is very bright doing well at school not bad as the haelth visitor said he would not go through mainstream school he takes thyroixene 200 mg daily and has blood test every 4 months hpoe this helps wish i had found a site like this 15 years ago we were in the dark but there is a lot of help now with tests
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734073_tn?1278899925
Thanks for posting about your son. Being a mother to a child who was born w/out a thyroid gland can be very unsettling at times. Kids don't always know how to explain how they are feeling, so it's good to hear about how well other kids have done with issues like weight and other possible hypo. health issues.Thanks for posting. It's good to know that your son has done well. Take care and God Bless!
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Avatar_m_tn
Don't worry, my daughter is 18 a freshman in college and making great grades. She was born in 1992 before routine testing for thryoid function was preformed in all hospitals. With a good doctor and frequent testing your son will live a normal and healthy life. Hyorthryoidism was the number 1 cause of mental retardation before testing was done early enough. My daughter still gets blood work every three months and I request not only tsh but T3 T4 counts and with that we are doing fine. She take synthriod and Cytomel for the t3 t4 problems but she had an iq of 140 and is of normal stature. So don't let prior 1995 testing and results concern you. There is no reason a child that had this problem found prior to their 1st birthday should not be expected to have a normal and healthy furtur. I did find it helpful to change her doctor every 5 years because doctors forget to be interested in the condition and forget how important frequent blood work is to their future. Expect frequent strength changes and do watch the growth chart for tips testing is needed more often during physical growth years.
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734073_tn?1278899925
Was your daughter born without a thyroid gland? Thanks for posting about her. My daughter is 10 and born without a thyroid gland in 2000. It was caught with the newborn screening. She is a very bright 4th grader. Her teacher just emailed me saying she wants to refer her for the gifted and talented class (EXPO). No matter if she makes it or not-it made me proud that she has come this far and that we caught her condition before any intellectual damage was done. This does not mean that she hasn't suffered time to time with the dredded symptom of "brain fog"  and forgetfulness from time to time though when her meds are needing an adjustment-but we always recognize it for what it is and take the proper measures needed to get her "thinking" and feeling better. Any advice or experience that you can share with us would be greatly appreciated since your daughter is" ahead of us" in this life without a thyroid gland.
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Avatar_f_tn
I was born without a thyroid, I am 29 years old, while I struggled with weight and sleep I am very healthy, and my son has a thyroid and is alos very healthy, the key is to keep up with doctors visits. see an endocrinologist at least every 5 years and take your medication as directed without fail. Its hard and annoying but it wont kill you to do it if you want to live a normal life. I go to college and work. It is just a part of who I am.
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Avatar_m_tn
If you still struggle with weight and sleep, perhaps your thyroid levels are not optimal.  If you will post your thyroid test results and reference ranges shown on the lab report, members can help interpret and advise.  
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Avatar_m_tn
I was born without a thyroid back in March of 1994. I'm currently attending Cal State Fullerton, am part of the honors society, and currently am looking at a promising career in accounting. I have always struggled with my weight over the years, at least ever since I was 5. The doctors knew within 2 days of my birth that I had no thyroid gland, but just the surrounding for it. It seems as if the mental state is different case by case as I have always been a straight-A student all throughout elementary, Jr. high, and high school. It's still a tough rode with frequent doctor visits and some people tend to struggle with growth. I'm not sure if my thyroid caused it, but I was also born with a small pituitary gland, and started high school as a 4'11 freshmen, but ended as a 5'9 senior due to the aid of Human Growth Hormone (HGH).

Best of luck to you and your son, I will be praying for the 2 of you as you go along this journey.
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Avatar_m_tn
How about posting your last several thyroid related test results and reference ranges shown on the lab report so that members can try to assess the adequacy of your testing and treatment.
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