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Born without thyroid Gland (Page 1)

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Thats me Sad It's quite rare (apparantly) to be born with out a thyroid gland completely. So im told. I have only met one other person to be bron without one completely like me and that was late last year, a close families little boy, who is 6!! crazy!

Anyway, i was just wondering about the dose ppl are on and how they are with it?? Mine is rather weird Sad frustrating actually.

I take 1000mgs(ten tablets) once a week.....
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First Helper Andri
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replied January 3rd, 2010
Oh, btw, im 19 years old. And for the past...3 years id say my dosage of levo hasnt been right!! trail and error my friends. it sucks.
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replied October 7th, 2011
No Thyroid Either..
i am 36 born without a thyroid gland. It doesn't get any easier.. My level have never been right. I am in the process of trying to find an endocrinologist that knows what they are talking about. I take .2 MG once daily and have for years. I have come to realize your body builds a tolerance to Synthroid..
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replied December 15th, 2012
If you live in Baltimore,Md I recommend Bay Endocrinology at Greater Baltimore Medical Center(GBMC)
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replied January 22nd, 2014
I am 55, born w/out a thyroid gland, and you're right, it seems to get harder to regulate it as one gets older. It doesn't help when there is a power struggle between physicians. Main Dr. is determined that I must be lying because no one is born w/out one, and so continually keeps lowering the dose...the other Dr. has me on 1.25. One and a half years ago the main Dr. changed me from 2.25 to 75. Go figure. This past summer the main Dr. refused to let me get an emergency 30 days of the .2 MG and I didn't have the $75.00 to see him and be retested (T4). I finally went to a local clinic when I could scrape the $25.00, after all summer and up until late Sept. I had to go without any thyroid medicine. I literally came real close to dying. My blood pressure was 290/150, my heart developed a murmur, and I was beginning to take on the facial characteristics of Downe's syndrome.
I have gone all my life taking thyroid medicine, but this man swears I insist on taking it to lose weight. What do you think? My levels have never been exactly right either! Growing up, my moom had to keep 4 different suits of 4 different sizes of clothes. I would go from Cindy Slim to Bertha Butt in the matter of 6-9 months. Your body will also build up a tolerance to Thyroid (name brand), and levothyroxin.
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replied February 13th, 2012
I am 45 going to be 46 in june have been on so many different types of meds.. cant lose weight..when i do it comes right back.. and it is even tougher when you top it off with diabetes and no insurance..
I am trying to survive on disability.. paying child support .. i guess they just want you to drop off ..lab draws every 3 months... its crazy
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User Profile
replied July 14th, 2013
I'm 28... And I only took 1 pill a day for all my life. And I was born without a thyroid gland also. I never heard of people taking 10 pills a day... That sounds a bit much.
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replied March 3rd, 2010
im the same. i was born without a thyroid and am on 1000mg a week and am 24 with 2 children. they change my dose nearly every couple of months and its not been right for ages. the only time it was ok was when i was pregnant! i often feel tired and am not really ever that hungry.
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replied August 21st, 2010
Hi I'm 27 and I take 150mcg of thyroxine a day. It has always been this much for quite a while now...I was told that I cannot have children when I was 18 because I did not have a uterus or my uterus did not grow as a result of having no thyroid.
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replied August 27th, 2010
hi im 21 an got diognosed with with my thyroid condition 4weeks from being born, an have to take 400mcg everyday depending on my tsh levels , from my throid condiotion has stunted my growth by 3 years, an has givin me a learning disabilty an partly blind in my right eye
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replied November 15th, 2010
Living with hypothyroidism
I was diognosed in 1966 at 28 days old. No thyroid or parathyroid. Also can't have children but no other lasting effects, so long as I take my replacement and take care not to eat foods that will decrease absorption. have thick dark skin on knees, elbows and knuckles, very thinning hair and weight challenges but feel very fortunate. Keep on you doctor to get your dosage correct! If your regualr MD can't handle it then find a good endocronologist to do broad spectrum testing.
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replied October 5th, 2011
Fortunate
You are very fortunate to have been diagnosed so quickly in 1966 before thyroid screening was compulsory in the United States.
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replied January 22nd, 2014
As for inability to have kids, don't believe it! I was told that about 26-1/2 years ago. An Indocrinologist had just got the results back from his lab,he looked right at me and said, "A bottle of rubbing alcohol has a better chance of getting pregnant than you do!" Well, the following Dec. 19, of 88, my daughter was born!
Take extra vitamins for the thinning hair, and extra B complex to help kick your metabolism up a bit. If I have to go w/out adequate thyroid med I start looking Downes Syndrome, I develope a heart murmur and become lethargic, apathetic, and b*tchy.
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replied January 31st, 2011
born without a thyroid gland
Hi, i have a one yr old son who was born without a thyroid gland, but i keep reading about girls being born without one and that sometimes they can't have any children, but what about boys??? does it effect them at all.
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replied June 29th, 2012
I was born without a thyroid, I am 40, I don't take the medication at all, It reduces bone density by 20%. My TSH level are 6x normal levels, and I test just below low on the T3 scale. I am also sterile. It is a possibility.
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replied December 15th, 2012
how have you survived without it?
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replied March 19th, 2011
congenital hypothyroidism
Wow, I didn't realise that people had all this trouble? I was born without a thyroid gland and haven't had any problems/side effects.. not yet anyway! I'm nearly 30 and pregnant with my second, and have gotten pregnant both times the first time trying. So I'm thinking Lisa, that your son won't necessarily have any problems..
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replied June 17th, 2011
When were you diagnosed
How soon after birth were you diagnosed? How quickly was treatment was started makes a big difference.
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replied March 19th, 2011
Wow, I didn't realise that people had all this trouble? I was born without a thyroid gland and haven't had any problems/side effects.. not yet anyway! I'm nearly 30 and pregnant with my second, and have gotten pregnant both times the first time trying. So I'm thinking Lisa, that your son won't necessarily have any problems..
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replied May 28th, 2011
no thyroidgalnd
hi i am 18 and was born 8 weeks early with no thyroid gland. i am on 100mg every day and have to get regular bloodtests. i have known about this my whole life and i am happy to find people who have the same sort of thing
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replied May 28th, 2011
no thyroidgalnd
hi i am 18 and was born 8 weeks early with no thyroid gland. i am on 100mg every day and have to get regular bloodtests. i have known about this my whole life and i am happy to find people who have the same sort of thing
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Users who thank hannah_1993_18 for this post: kortney03 

replied May 28th, 2011
no thyroidgalnd
hi i am 18 and was born 8 weeks early with no thyroid gland. i am on 100mg every day and have to get regular bloodtests. i have known about this my whole life and i am happy to find people who have the same sort of thing
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replied June 2nd, 2011
Hello. My name is Tristan. I am 13 years old, I am a girl and I was born without a thyroid gland. My little brother and I both were. He is 12. I have been taking Levoxyl my entire life, he has taken Synthroid. I only recently learned that when I get older I will only have a 0-3% chance of having a child. I would wish to but not for a couple years. I was shocked and very upset. I know I shouldn't be thinking of that at such a young age but I like to look at the future and I was greatly upset. I hope things change before than. I am happy to meet other people with my same condition. At least I know I am not alone in this.
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Users who thank Trissa for this post: kortney03 

replied June 24th, 2011
Hypo/Hyperthyroidism
Hi my name is Shaun and I'm 32 and I was born without a Thyroid gland and I currently take 250mcg of Levothyroxine a day. I'm pleased to have found people in a similar position as me. I was diagnosed after I was born using the heel prick test (in 1978). The doctors pulled no punches and told my mother I would grow up a 'Cretin'!!! I have no disabilities to speak of, just symptoms, horrible symptoms that can be associated with both Hypothyroidism and Hyperthyroidism, heart palpitations, fatigue, weakness, severe perspiration, depression, dry skin, forgetfulness, irritable and so on - the list is endless! I have never had 'normal' levels. Doctors are concerned about raising my dosage due to high blood pressure so I'm stuck feeling lethargic. I have just had a baby Daughter who is now 9 months old, she is perfect and has a fully working Thyroid.
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replied June 24th, 2011
Hypo/Hyperthyroidism
Hi my name is Shaun and I'm 32 and I was born without a Thyroid gland and I currently take 250mcg of Levothyroxine a day. I'm pleased to have found people in a similar position as me. I was diagnosed after I was born using the heel prick test (in 1978). The doctors pulled no punches and told my mother I would grow up a 'Cretin'!!! I have no disabilities to speak of, just symptoms, horrible symptoms that can be associated with both Hypothyroidism and Hyperthyroidism, heart palpitations, fatigue, weakness, severe perspiration, depression, dry skin, forgetfulness, irritable and so on - the list is endless! I have never had 'normal' levels. Doctors are concerned about raising my dosage due to high blood pressure so I'm stuck feeling lethargic. I have just had a baby Daughter who is now 9 months old, she is perfect and has a fully working Thyroid.
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replied March 3rd, 2012
Hey Shaun. I am Nik. Im 17 And was born without a thyroid as well. I have had those same symptoms since i was about 10. So far i ve been okay. Dont feel ood very often though. Um, I was wondering if we are suppoed to die early or something? Males that is. You are the only other male i have found and i was curious as to why that is. Thanks!
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replied June 24th, 2011
No test\no thyroid
My son was born without a thyroid. Unfortunately it was in 1975 before testing was mandatory nationwide. He was not tested. Our family doctor was away at his birth and he was delivered by another doctor. After just a few days when I reported that my son would not eat, I was told I was just too neurotic. I was a young mother and the baby, this doctor said, was sensing my uneasiness at being a mother. When I took my son for his 6 week check-up, my doctor didn't seem overly concerned. But, after several more weeks of the child not eating and showing signs of "failure to thrive" I took him back to the doctor. This doctor, a German lady, who had been our doctor all of my life said, "I know that there is something wrong, but I don't know what it is." She sent me to a pediatrician that was connected with Children's Hospital. He took one look at my son, at that point in time 11 weeks old, recognized his symptoms as advanced hypothyroidism and sent him to the hospital. Testing proved that there was no thyroid present. I was told that there was brain damage and that my son would be anywhere from severely retarded to trainable, "don't hope for much." Our journey has been fought with many tears and struggles, many joys and sorrows too much to go into here. But, I will tell you that while at almost 36 years of age his struggles are not over, Doctors proclaim he is a miracle and I wouldn't trade him for anyone. He is one of the greatest joys of my life!
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replied January 1st, 2014
My son is 22. Was born with complications and no thyroid gland. He is currently on 500mcg. He lives with us and we don't have insurance for him. He is a full time college student and doesn't work. He had an endroconologist until my husband went on disability. I have not found a doc for him. The last one we saw said "interesting" when my son told him he was born without one. He's always had a broad spectrum lab overly 6 months until we couldn't afford the appointments and panels I'm extremely concerned about his health. Long story short, I worry about his hormone levels since biologically he's about 2-3 yrs off developmentally. They told us from the get go that they could not tell us for sure how he would be as an aduldt....now that he is, I have no where to turn to see that his medical needs are taken care of. Any thoughts?
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replied November 20th, 2011
3 year old princess
Hello ALL. We have a 3 year old beautiful little girl whom was also born thyroid"less". The condition was detected 4 days after she was born, thank the Lord. She is currently taking .65 mcg of Synthroid. She is in the average percentile as far as physical development. Mentally and intellectualy she is WAY above average. Unusually light complected, thin hair, EXTREMELY hyper. Easily Irritated, ansy. We are interested in communicating with parents of a child with the same condition, age and sex. Praying for Everyone living through this! davidandaprilare at yahoo dot com.
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replied December 18th, 2011
Hi, my princess was born with no thyroid also, she was diagnosed when she was one week old, she is currently 5yrs. old. My little girl is the same with easily being irritated, her hair has thickened. Currently she is on 67.5 but has been up to 75mcq. she is average with her growth and intelligent also, we had some problems with social problems, she was very,very shy but with the schools help she did come come out her shell. Prayer for you and your family also. God Bless.
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replied December 8th, 2011
My 4 week old was diagnosed at 2 weeks old and I found out yesterday that he has no thyroid at all. Upsetting as it is, reading everyone's comments are comforting. There is no point in me upsetting myself over it, as nothing else can be done other than taking meds and keeping on top of appointments. Fingers crossed he will be ok in the future, but whatever happens he is still my beautiful son and I will do everything I can for him in life. He is on 25mg one day and 50 the next. His appetite has since increased and sleeping levels have decreased, just waiting untill the 19th for his next bloods now. Smile
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replied December 18th, 2011
Hi, my daughter is 5 yrs. old and was born without a thyroid, she was diagnose a week after she was born, she was in the hospital for a week, she had extreme jaundice and she was currently hospitalized when the newborn screening came back that something was wrong, so they re-tested her and the test came back with no T4 level and gave her her first dose of synthroid and then had to spend two more days in hospital because they couldn't get her jaundice under control but at least by then they knew why. so when they released her we had to drive an hr. to a different hospital which had the special scan to see what her thyroid looked like and nothing was there, no gland nor tissue. I just wanted to reassure you that at first it is difficult, back and fourth to the endo and lots of blood work, for awhile we had to have it done every week because her levels were up and down and lots of changing of doses, but now she is pretty leveled out for the time being and currently on 67.5mcq but have been up to 75 at one time. Currently she is a normal child height and weight and very smart. she had a rough begging but is doing quite well. Having a really good endo is also a plus, I love our endo and she was there for us with the hardest time in our life. If you ever have question or need support just write me, I know how scary it is at first. God Bless you
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replied November 17th, 2012
Hi I like ur post. My daughter is 6 months old with no thyroid. She is currently on 25 mcg tablets. We r very scared. Will our daughter live a normal life. What difficulties u face up to now please share with us. I will be very thankful to u.
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replied January 1st, 2012
I also have no thyroid and take 300mcg a day. I just had a baby and have been feeling my lowest (ie, lethargic, weak etc) I have been hospitalized several times due to my hypothyroidism.
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replied January 1st, 2012
is this your first baby? How old are you if you dont mind me asking? My little girl is to young to have a child but I just trying to get an idea to what the future could be for her. Makes me sad to hear you have gone through problems. Was your baby affected from CH? Did you have to follow anything special during the pregnancy? Sorry for all the questions.
God Bless and keep you and your child in his loving arms.
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replied January 15th, 2012
i am 23 yrs old, and born without a thyroid. The doctor called my parents 2 weeks after being born. I have been on medication all my life after that. I have struggled with this my whole life,and had very low self esteem issues. i have two sisters that are very close in age, and although we are very close with eachother, i always felt they were perfect as where i struggled with everything! i struggled with my weight my entire life, and i got sick of big fat, it was a struggle the entire time, but i finally got down to a size 7, the same size as my beautiful sisters. when i was pregnant with a baby boy, and it was a miracle because i had no idea i could get pregnant. my doctor told me at a young age that getting pregnant would be very hard. i was devastated. My sisters volunteered to carry a baby for me, bless their hearts, But thanks to the good Lord, i got pregnant. Although i was thrilled to have a baby on my own i was terrified that he would have the same problem as me. not only that my pregnancy was very hard. my doctor that is in control of my thyroid didnt have me on the right dosage no matter how much i told him it was off. so i was gaining a massive amount of weight. thankful the thyroid i depended on, i imagine went straight to the baby. something i was willing to sacrifice for him. Anyways the delievery wasnt to smooth going either. My baby actually flat line before actually being delievered and apparently from what my fiance told me i was put on oxygen. they attached some kind of cords to him while still inside (sorry if to personal) and got him back to breathing. it was the most terrifying moment of my life. but incrediable i gave birth to a beautiful 9 lb 10.5 oz 22 1/2in. boy (fiance has big babies, his other son my stepson was 13 lbs) he was truely a miracle. I will never chance it again, being so close to losing him, but he is a healthy 3 year old boy, that seems never to sit still. he has a thyroid thank God and at the perfect weight for his age! i am ofcourse still trying to lose the 70!!! pounds i put on which is back to a being major struggle. but is going to see if the doctor will up the dosage next visit because i get major headaches, am always tired and my fingers and toes seem to be tinglally (sp?) good luck to everyone out there that is struggling.
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replied October 13th, 2012
born with no thyroid, 25 years old
i am 25 years old and was born with no thyroid...i have been on synthroid my whole life and it wasnt until recently i started researching about my condition..i have always struggled with depression, attention problems,low self esteem, also a feeling of being disconnected from the world..it is very reassuring to know why i feel this way and that it is the hypothyroidism..as for problems getting -pregnant, THAT IS NOT TRUE ONE BIT. i have a five year old boy, four year old boy, and a one year old girl, so keep faith !!!
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