Thyroid Disorders Community
I'm thyroidless too : )
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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'm thyroidless too : )

Hi there, I was also born without a thyroid gland too.. Does anyone have concerns about the longterm effects of just taking synthetic hormone (I take thyroxine)?.. I go between 150-200 a day, I feel that 150 is too little, 200 is too much but the doc always says I'm normal- but I guess that's because there is a large range of normal.. Apparently, i remember reading somewhere that most people feel better when they are on the higher end of normal. Makes sense really.
I'd love to hear from someone : )
I'm 26 and have a son who is 8, and like everyone else on here- he's perfectly wonderful!



This discussion is related to i was born without a THYROID GLAND, WAS ANY ONE ELSE BORN without one?.
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Avatar_n_tn
hey there...Im 25 years old and I was also born without a thyroid.  I take .175 synthroid and it seems to be working for me.. I tried combo therapy and was on both synthroid and cytomel. I def was at my lowest weight but felt too speedy.. I was on that for about 2 years.. I know I feel better when the synthroid is higher... Did you have to stop taking the synthroid when you were pregnant, i think its safe to take the medicine.
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Avatar_n_tn
Hi,
Well, I was born with my thyroid, but I don't have one anymore.  I also use 175 synthroid (generic) and it seems the perfect amount.
I didn't realize that some people are born without a thyroid. Interesting.  How is it discovered when you are a baby?  I mean how did your parents or doctors figure such a thing out? I imagine as an infant you showed some sort of ill symptoms? Were any other glands missing?  I hope you don't mind me asking.  I'm just fascinated by human physiology. :)
Emmy
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Avatar_n_tn
Yes- it can happen. Its called sublingal thyroid.  The cells were there but they never fully developed and never "dropped".  They do mandatory testing on all infants born and test for an array of diseases.  They found out when I was about a week old. I have no other glandsmissing... I did have appendicitis last year, which is totally unrelated, but I thought I would share.

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468796_tn?1220033045
Hey...im 18 and i was born without a thyroid...i have always wanted to talk to other people with the same "situation" but i have never meet anyone!!!


So if anyone would like to talk send me a message and add me as a friend..im really interseted!
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Avatar_n_tn
Thank you for sharing. I learned something new today. :)
Emmy
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498362_tn?1209871552
I am 30 yrs old.  Born without a thyroid in 1978.  And since I have hit my mid-20's it seems controlling my meds is getting harder.  Then just when we thought we had it under control, I got pregnant.  Which I was thrilled about because I had a few docs tell me to forget that possiblity with my medical condition.  I had an overall healthy pregnancy besides high blood pressure, but that has a lot to do with the Taco Bell I craved and ate almost everyday!!!  :)  
Anyways, I had my son Dec. 2006.  About the time he turned 3 mos. it's like my body went really topsy-turvy.  I have continuously gained weight with a moderate amount of diet and exercise.  Since Mar 2007, I have gained over 70lbs!!!!!  I have been feeling tired, fatigued, and I am sick every time I turn around!!!!  I am now on the highest dosage of synthroid that they make!  .300 mc PLUS have of another of those.  So I take .450mc of synthroid everyday.  You would think I would be doin good... But I feel as though my body no longer acknowledges my meds!  
Well, I need to go for now, my son is wakin up from his nap.  BTW, he has a thyroid and healthy as can be!!!  :)
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Avatar_f_tn
I am 26, and I was born without a thyroid also.  It was found in the newborn screening process.  I have been on Synthroid since I was 2 weeks old and have always seen an endo.  The only other thing I was born with was a Cleft palate (and luckily not with a lip one too) but I do not know if it is related.

As far as your meds not working has your doctor tried to put you on something different??  and have they tested other hormones???    I have always been on Synthroid, except for a couple of years ago I tried armour ( I didn't like it) but people rave about it!  You should talk to your doctor about options.  Also I take metformin. When I was 19 I gained about 50 lbs in a few months.  I was never heavy and was very active.  Ever since then I have battled with maintaining my weight.  At one point I was running 5 miles 4 times a week and NOT losing a lb.  Back to 19, my testosterone was at 120 and supposed to be under 70.  I went on birth control and lost weight immediately!  I then added in metformin almost 2 years ago.  I still struggle with my weight bit.

In all, so many of my hormones get screwy.  I get my thyroid checked almost every 3 months now.  This way my doctor and I see the differences in levels in between not just the numbers.  If my levels are creeping up in a couple month period chances are they will continue to rise until out of the range.  I read something on about.com that said when you have no thyroid chances are your meds regulate easily.  I believe this to be very incorrect!  More than 1 of my doctors have said I am very hard to regulate because I have no thyroid.  

I've learned that I can go into my doctor and say please check this this and this.  I would look into getting a full panel done if you haven't in a while.  It can be expensive even with insurance, but my sanity is worth the monthly payments I will make!

Sorry to blab.   I love that I get to hear what other people have to say about something I  grew up alone with.
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Avatar_n_tn
hi everyone,

i am male, 22 years of age and i was born without a thyroid.  the docs discovered that i didnt have a thyroid when i was 2 weeks old. I saw a physician every 6 months throughout my childhood to keep a close track of my growth.  I have been taking 200mg of thyroxine every day since i was born.  People always ask me if its annoying, but I dont think it is. i am used to taking it every day now and its just one of them things that i just do.

Apparently there are 1 in 15000 babies born without a thyroid gland.

I am 6 foot 2, 80kg's, and healthy.  The only thing I am concerned about is acne, i have had moderate acne since i was 16 and not sure if the medication has anything to do with it or not.  If anyone knows anything about it, id love to hear some feed back.  And i would also like to know if it would have any effect on me being able to have kids....
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Avatar_n_tn
hi! i was also born without my thyroid gland. im almost 30 and have 2 healty boys, 12 and 5. ive always been underweight and vertically challenged. lol. im only 5 ft. and weigh 93 lbs. when i was pregnant i gained 50-97 pounds. right now im having trouble getting my levels back to normal but its getting there. currently on 150mcg of thyroxine. i stay tired and hungry. too much sleep kills me and not enough kills me. cant ever get that right. i can eat whatever and not gain a pound but wish i could. anyway, just thought id share, kinda curious if others have the same problem. my email is ***@****. thanks
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Avatar_f_tn
This is the first time I have come across so many people born without a thyroid gland, I have always felt alone with it n have never seen a forum for it before.

I was born without a thyroid and struggle to find anyone who can understand the condition. I am also quite intrigued with the various medications everyone seems to take, do different countries give out different medz?
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Avatar_f_tn
I was born without and diagnosed with hypothyroidism after a week of living. I have been on synthroid since before I can remember, but with my lack of motivation, I have never been constant and reliable on taking my medicine like I should. I am almost 26, glad to be alive but scared for my future. My husband and I want kids but I'm afraid that my unstable medicine taking habits are effecting that chance.

Are there any suggestions on how I can teach myself into a routine of taking the medicine and vitamins I need? Has anyone else had issues like this??
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