Thyroid Disorders Community
I was also born without a thyroid!
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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I was also born without a thyroid!

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15 Comments Post a Comment
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499534_tn?1328707778
Hi Miranda....welcome to the thyroid forum.
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Avatar_n_tn
hi i was also born without a thyroid gland
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Avatar_n_tn
oh wow i was born w/o a thyroid too :O...hey does anyone have "the neck?" i was just wondering bc i have it...
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1038111_tn?1252864759
I was also born without a thyroid. Ive never got to talk to anyone in the same situation. What is "the neck"?? I would love to talk to someone about this. Noone in my family has any medicial issues so its hard to talk to them about stuff.
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734073_tn?1278899925
Hi Beth, My daughter is almost nine (next week) and was also born without a thyroid gland! You really are not all alone on this, as I know it often seems! I have no idea what "osas1203" was refering to with the "neck" unless she was talking about what a "pain in the neck" it can be, living without this gland! It sounds so simple doesn't it? But we are finding it more and more complicated as time moves on and as the needs of her body begin to change. Do you mind telling me your age/weight and medication used? We have definately had issues with health and meds over the last year. We are working on it and beginning to see some light at the end of the "dark thyroidless tunnel" now! I would love to know more of your experience as it could truly help her and others who are out there and may be younger than you. Any advice or communication would be much appreciated!
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1048831_tn?1253657096
Please excuse my ignorance, but what is "the neck?" I know about the "wings" and other such symptoms.
I too was born w/out a thyroid gland.
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734073_tn?1278899925
What are "the wings"? Would you mind sharing some of the symptoms/experiences that you have had with being born without a thyroid gland. My daughter is 9 and born withouit a gland. What meds. do you take for thyroid hormone replacement? Also, what suppliments are you taking? I look forward to hearing from you about your experience with this. We can use all the help and advice that we can get! Thanks so much!
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Avatar_n_tn
Yep, born without one, it is so funny because you always hear how rare you are ant then you find a site like this and now I don't feel so... out there. I was diagnosed when I was 9 days old. Something about a bone not being where it should be... i was new so I couldnt tell you the events that led up to "you don't have one because you came that way"
I have been taking 150-175 mg synthroid, but I find that the whole female part of lacking the butterfly shaped organ that just so happens to be Hormone Grand Central Station is complicated. Anybody else dealing with this Aunt Flo situation?
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Avatar_f_tn
I was born without a thyroid gland. I came out breach and extremely jaundice.
My parents told me that if the doctors hadn't figured out what was wrong, I could have been mentally retarded. Also, I may have had to go through a blood transfusion because of my liver not working properly, which cause then jaundice. As soon as the doctors figured out what was wrong, they gave me a synthroid and I was instantly better. My parents said that I slept 22 hours a day when I was a baby, possibly because of my thyroid condition. I frequented my endocrinologist's office from birth to 13 years of age to keep close watch of my condition and to get my blood tested. I know the side effects to not taking my medication and it scares me to think about it.

I'm 27 years old now and have had great success with my meds. I'm tired almost all the time, but my hormones are right on track. It's funny to think that I matured just from taking a tiny little pill everyday since I was a baby. I haven't met anyone yet that has the same condition as me. It would be cool to share experiences.
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Avatar_m_tn
Hi, I am 20 years old and was born without a thyroid too, diagnosed at six days old. It hasn't lead to any major obstacles in life but sometimes can be a hassle between finding a perfect dose balance and visiting a specialist regularly. I was raised in a really small town so it was always difficult to find the time to see a specialist and a dependable doctor to rely on. The only time I really ran into a problem was last year; I got really thin, lost my menstrual cycle, had very low estrogen, and was very emotional. That's when i realized how important it is to get checked up regularly and most likely won't run into any other complications.

I actually had a question for Lexy....How often do you see a specialist and get your blood work done??? I figured to ask you since your a young woman but still has a little more experience handling your hypothyroidism.
Thank You!
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Avatar_n_tn
my neice was born with out a pituitary glad, she was normally around 100 pounds... now she is at 77 pounds. (it seems like ever since having her son she has gone down hill. Drs say there isnt anything else they can do for her and that she will probably die because of it. any advice? anyone deal with the same thing?
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Avatar_m_tn
I was also born with out a thyroid.
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190559_tn?1280615967
Hey, someone in your newfound "club" ought to start a Facebook page!  It might be a great way to share your experiences and what has worked/not worked over the years.  Just a thought...
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Avatar_m_tn
My parents found out that I had hypothyroidism when i was 2 days old. It actually kind of runs in my family.My cousin has hyperthyroidism, and my grandmother on my father side had hypothyroidism. Growing up with it was pretty rough, having a family of 8 children and being the only child who has hypothyroidism. So as am I am growing up I am trying to learn more about it. I actually do have one question though. Does anyone who takes synthroid or any other medications that are simular, ever have nosebleeds?
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Avatar_m_tn
You will get much more response to your post if you will start a new thread under your own name.  You can do this by clicking on the green Post a Question button at top of page.  
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