i was born without a thyroid gland

[newy]

hi i was born in dec 1977 and without the thyroid gland i was known as a cretin weird i know !!! doctors realised this wen i was 2 weeks old as my organs were failing !! i have been on levethyoxine ever since ,,i didnt actually start puberty till18 which was very embarrising for a young girl ..i was also told after continuing brain scans and blood tests it would be hard to concieve kids ... i now have 3 beautiful healthy kids with thyroids !!! am 33 and have a 10 yr old boy jay a 5 yr old boy louis and a lil girl amaia  nearly 3 .....i still take my thyroxine daily and have blood tests every year ..but i am known to faint any1 else who is a cretin without a thyroid do you faint ? this happens once or twice a year ? reply please xx


This discussion is related to i was born without a THYROID GLAND, WAS ANY ONE ELSE BORN without one?.

[Trish0955]

I was born in 1955 diagnosed at three months old as not having a thyroid gland. About 5 or 6 yrs ago I got switched to synthroid from pure thyroid pills . I have gained about 30 pounds and am having a very hard time losing weight . When they weigh me they say because of my height and weight I am obese. But given no alternatives to this medication. I am totally frustrated . Does this Armour make you gain weight as well?

[Ryzmom2101]

I was born with no thyroid in 1971. My tongue grew but the rest of me didn't. They didn't figure it out til I was a few weeks old. My mother could not get the bottle in my mouth and I cried for 24 straight hours. I have speech problems, to this day. When I am really tired I slur my R's and "L". Had speech therapy til 7 yrs old, always sucked at math, a daydreamer and overweight since puberty. Have been on synthroid since I was a few weeks old. Was able to get pregnant pretty easy and had a normal functioning child with no issues except ADHD-inattentive. I am in college, trying to get my AA. I have a lot of focus issues. No fainting. Oh, I did have a hysterectomy at 38 because of a low potentially malignant tumor on my ovary.

[SalemWW]

Hi, I was born in 1957.  They didn't find out I had no thyroid until I was 2 years old. Then I was put on the pig thyroid. I was on armour after that until late 80's until they put me on synthroid. That is when the trouble started. Weight gain, anxiety attacks, diabetes and high blood pressure. I just chalked that up to getting older. The tests kept saying I was normal but I didn't feel right and at my age and all those years of me being a lab rat since it was really uncommon especially for Doctors in the 50's, I knew something was not right. Your thyroid controls the function of just about all your organs. I recently read Armour is better for people without a thyroid that sythroid is okay for the slow thyroid patients. I shared this with my Doctor and she put me back on Armour. We are still working out levels. Atarted around Thanksgiving. Had to raise it twice. Now I have to wait 5 weeks for test and we will see. I still feel 'off' so may need just a tad more. I was told I would have learning disabilities. I did but my Mom and I found a way to teach me to learn and remember things. It is unconventional but I can do everything anyone else can. Sometimes more like being on the computer. I taught myself everything. I sometimes don't know what a procedure is called but I know how to do it. They said I would never walk or have kids. I was walking before they found out. I also had 2 kids now 32 and 34. Both are mine. My Son is a Psychologist. My life as a child was hard because I practically lived at the Doctors and Hospital. I have an idea of how the first test tube child felt. Like a lab rat but I have had a pretty good life. Everytime I get a new Doctor over the years from moving or whatever I tell them and of course they think I don't know what I am talking about, take a sonogram then say "You have no thyroid!" "Nothing. not even a tiny nodule". I could say "No ****" but I just smile. The birth of my kids were very rough. They did not want me to have the 2nd one because of Toxemia. I tore up to my cervix and my heart stopped for a moment but I thought it was a miracle and maybe I only had this small window of opportunity so I had my Daughter. Six years later we tried again and I had a miscarriage. After that never again could I get pregnant. I am glad I stuck with my guns. My daughter was breech and I had some level of Toxemia but not as bad. The thing that worries me is that the Doctors said since I was 2 years old when they found out that I may not make it much past my 40's. I am 56 so am I living on borrowed time? As for the walking part, I have strong bones but very thin meniscus so have had total replacements in knees. So what they said I couldn't do was about a trace on each count so hopefully I will make it to at least 65. Either way I was blessed with a great Husband and kids and a life that I may not have had if one young intern at the time hadn't had a thought and checked his medical book. He called my folks my whole life until he passed away a few years ago. He went back to school after he helped me and specialized in endocrinology. My folks said he would carry me around and call me his miracle baby. I am curious if anyone else has a skin problem that mimics boils without the infection. The fluid is sterile when tested. They are quarter size and in areas of sweat glands. Started around age of 12. If you do I have a name for it.

[smilinmelis]

Hello I am a 40 year old that has a thyroid gland it just doesn't work since i was about 2 months old. My mom called the Dr. said I sleep alot (ok what baby doens't) I had a screachy cry and i never pooped ok she's has something there ALL babies poop but not me. THey started me on an adult dose of Synthroid and 40 yrs later if I miss one day I feel sluggish and out of it.
I am about 5 ft and 1.5 inches (I give myself that 1/2 in) about 116lbs. was also told I would not finish HS, and carry babies. I am a MA with 18 yrs experience and, I have a 17 yr old daughter(has hypothyroidism about 3 yrs ago) and a son that is 7 and I get him tested every year, skinny lil thing. Does anyone have problems with speech or asthma? I am tring to see if there is a link between my thyroid gland and my asthma to help me talk with the pulmologist to get me to stop wheezing all the time. and my employeer said I slur my words.BTW  I am so glad I am not the only one with this problem someone to talk to thanks.Melissa

[lilbit1979]

i was born in 1979 without a thyroid gland and been on synthroid ever since also. im 5 ft and 98 lbs. have 2 healthy boys too. im now experiencing hypoglycemic sypmtoms and have fainted due to it. it *****!!

[jayman406]

I was born in 1973 and I didn’t have a thyroid gland. They didn’t screen for that back then. My mom had breast fed me and that saved my life. After she stopped breast feeding my I got sick. The doctors did a series of tests and they discovered that I didn’t have a thyroid. They found out that I was getting the necessary hormones from my mom’s breast milk. Had I been on formula I could’ve died or mental handicap? I’m a male I had always wondered if not having a thyroid gland would have an impact on my fertility. My Wife got pregnant this past January but she had a miscarriage.

[MoneyBoo]

I was labeled one too . I was also told I would never have kids, would have stuted growth with mental retardation, was like the only wone with this condition. apperently it is still rear because about two years ago my doctor that I HAD did not believe me and sent me for an ultrasound which proved that it was true. What a waist of time since I already knew that.
But I still get the WOWs and OHHs evertime I go to a differant doctor. I get very fatiged easy. The only time I used to what I call 'black out' is when I was pregnant. with two of my kids. By the way I have four children that all have thyroids. I think that it was due to not eating well and not drinking enough water and that fact that I needed extra for my pregnancy. Bothlabors for those pregnancy were very hard and all of my kids had there umbilical cord wrapped around there necks. My oldest son has CP due to his UC wrapped twice and choked him to uncontiousness.
I have been doing a lot of research about natural cures and other ways of eating better since I have had severe constipation due to it. Since i HAVE STOPPED EATING MEAT and my stomach no longer is like im 8 monthes pregant when i am not. I feel a lot better. Its funny because now I tell my doctors and nurses that and they say good for me yet it has never been reccomended to me for that reason...just colace which doesnt do anything. But As thryoid deficicient sufferers or no thyroid, we need a lot of carbs to keep focused and not get fatiged. Hell, everyone needs carbs for there brain to function but we need the full daily amount if not a little extra. The drawback 9to some people) you have to eat the right carbs like whole wheat bread, pasta, oatmeal etc... I would not suggest to anyone to stop eating meat unless you are have done the research. I went on PETA and that was what initially did it then I went back and started eating it again because I didnt know what to eat because I was so used to that lifestyle .. but ended up feeling horrible which really showed me the differance. So, I havent eatin meat since about October of 2010 and feel fine unless i am not eating which i have a tendency to do. Or I will be busy and wait to eat all day, then I will feel light headed and then I will eat some oatmeal with vanilla yogurt on it and within 10 minutes I feel so much better. Try eating six Small meals a day and pay attention to how you feel after you eat. You will feel the energy come in and the fatigue go away.
I have to go because my loving fiance is wanting to watch a movie with me but if anyone has any questions my email
is yvonne.***@****
I am 30 and they found out I had no thyroid at 2 days
have been on synthroid and levthyroxine since then. I really love to help and talk to people like me because it makes me feel less differant.
Good Luck and Good Night!!
Sorry for the spelling I wanted to get all that information quick.
Also I am not trying to put my info out but both of my parents were doing a lot of drugs that were out at that time. I was planned and mother says she quit when sshe was trying to conceive, I was just trying to see if maybe that was connected to this issue. You dont have to repond to that but if you can it would help me.
Also Oprah has a forum at oprah.com that women started with no thyroid so you can check that out.

Ok Bye now... I will shut up!!!LOL

[magpieannie]

It's not common to be born without a thyroid gland at all. 1 in 250,00  I've seen quoated before. Who knows how many and why it happens really? My daughter was born wiithout her thyroid in 2000. She is 10 years old and doing pretty good now. You don't have to have the gland to live but you do have to have the thyroid hormone. If niot caught early on then developmental problems happen both physical and mental. Thankfully hers was caught at 3 weeks of age. She is normal in every way. How has life been for you without a thyroid? How old were you when it was discovered and how has Synthroid been for you as a medication? Do you have any lingering hypothyroid symptoms/issues? Glad you found us and Med help. This is a great site to get info. and compair notes when needed. I have made many great and helpful friends and alies here.

[ronnie_10]

i was also born without one.. i thought id search the web to see who else was born without one or see how common it really is. my doc put me on the synthroid pill that of which i have to take everyday.

[magpieannie]

You are not really a "cretin" unless you were not given enough thyroid hormone and your body and brain did not develop correctly due to this.Cretinism is the old timers term used to explain/label people who had the physical and mental symptoms of having too little thyroid hormone available to them when they were babies and young children which effects both mental and physical growth. If you were born without a thyroid gland but began the proper amount of thyroid hormone replacement at two weeks of age, then you should have developed normally. I know this because my baby girl was also born without a thyroid gland in 2000. She began Synthroid at 3 weeks of age and she has developed into a normal 10 year old today. She never faints, however she did have some issues while on Synthetic t4 only for the first 8 years of her life. She has been on desiccated t3/t4 replacement for the last 2 and 1/2 years now and is symptomatically better in every way. She is 10 and tall for her age and a little on the heavy side but not fat. She is very smart an does well in school. She has not started her period. I started at 12 and 1/2. 18 sounds good to me though it is kind of weird to go that long, I'm sure it was related to your thyroid levels some how!  I worry that the change in her body hormonally might be difficult for her thyroid wise and am not looking forward to menistration. I don't know if I should expect it early or late or right on time. We've already discussed it just incase. She is just starting to develop breast buds, so all seems normal so far. My goal was to get her thyroid issues balanced out and going in a better direction before this occured, and I have done that. Is their any other things that you can share with me on living life without a thyroid thus far? I'm glad to know that you were able to have 3 healthy kids with thyroid glands.My daughter always says she will adopt some day. I tell her that would be fine, however she and her husband may decide to have their own some day. She already worries about things like this at 10. It's sad!  She says she doesn't want to take a chance of her kids being born without a thyroid too. Did you have any issues keeping your thyroid levels high enough during pregnancy nd how did you feel? Please share some of your experiences with us, as it is hard to find others who were born without a thyroid (Congenital Hypothyroidism).