Born w/out a thryroid?Anyone?

[Ryzmom2101]

Just wondering if anyone out there was also born without a thryroid. I was and I've never had the chance to talk to anyone else like myelf. I do have a child and he is normal(thank GOD). My levels were checked once a month while pregnant as my dose increased and has remained the same since(6 years). Any other mothers out there experience this? My email is ***@**** if you'd like to chat.

[magpieannie]

I'm so glad the doctors were wrong w/their predictions for your future. My daughter is nine and was born in 2000 w/out the gland. She was diagnosed early however, and is also fine mentally and physically. She is tall for her age, but is a little on the heavy side. Not fat, but her belly does stick out too far and she is very stout. I do worry about her weight gain,(she seems hungry 30 min. after meds) and we are trying to eat less unhealthy carbs. and sugars. I am considering getting her involved in competitive swimming. She also loves basketball (her dad is her coach) and riding her bike to and from school. She has also had the meriad of hypo. health issues on synthetic t4 meds (Synthroid) The worst was heart palps (pvc's) last year. I switched her to desiccated hormone (Naturethroid) and she is better in every way (constipation, heart palps, muscle and joint pain, emotions, temperature,energy are all improved or non exsistant). Her t3 was always low on the t4 med (conversion issue). Desiccated has t3 in it as well as t4, t2, t1, selinium, calcitonan and other things more identical to human thyroid hormone but at different amounts. Her freet3 and freet4 are much higher in the normal range and her TSH is kept under 1 now. She is not "hyper" in any way and is feeling more like a  "normal" kid again. I just wanted to share our experience w/ you, since you talked about feeling depressed and tired  w/ weight gain and muscle pain in your post. Have you ever considered changing meds. to see if your symptoms could be aliviated or improved? Many times we are told that we are fine because our labs fall in the  "normal" range". However, if our freet3 and freet4 are too low in the range, hypo. health symptoms can persist. Just food for thought. I wish you well. God's Blessings to you!

[laviepourme]

Hi, I am 32 years old. Born without a Thyroid Gland. Always been told how rare I am...very refreshing to see others who are dealing with the myriad of random health concerns this condition seems to cause. One thing that is still leaving me lonely, and questioning the effects of my circumstances is... they did not discover I had no thyroid gland until I was 10 MONTHS OLD! They told my parents I would be retarded, and much more, I am 5'6 and weigh on average 160, but fluctuate between 140 (my low) and 170 (my high) I was told I wouldn't be taller than 5'2"... lets just say the doctors have been wrong about a lot. I feel I am a medical anomaly... My dosage has remained right around 200mcg most of my life, and many times I have felt very low... unexplained weight gain, depression, extremely lethargic, pregnancy hormones, body aches, etc.... Just to be tested and the doctors say I am in the normal range and not make any changes. This is very frustrating and disheartening for me... I am currently battling depression and weight gain, and have no insurance/no job. ANYBODY OUT THERE THAT WAS DIAGNOSED LATE? AND IS "NORMAL"?

[magpieannie]

Hi! Good to hear from you about being born without a thyroid gland. My daughter was born without one in 2000 (detected in the new born screening at hospital). She of course was given Synthroid by ped. endo. at the age of 3 weeks, which thankfully kept her brain and body developing and growing normally. However at the age of 4 she began putting on weight, constipation, hoarse voice and low body temp with occasional muscle pain. At the age of 8 she began having heart issues and dx with PVC's (83 in 20 days) by pediatric. cardio. Had her freet3 tested and it was very low, however her freet4 was higher in the range (conversion issue). We decided to switch her to desiccated (Nature-Throid used now) She is doing fantastic after 5 months on this.( Armour brand reformulated and she began not feeling well on it, however it is what we first tried when making the switch from synthetic t4 to desiccated). Nature-throid should be available again soon. (supply and demand issues) My daughter is 9 and weighs 115 lbs. (tall for her age thankfully)! She takes 1 grain more (3 grains) of the Naturethroid then what the conversion chart says and then what she was on w/the Armour(2 grains) to be symptom free. Her freet3 and freet4 are kept higher in their range and the TSH is kept below 1. She is doing very well and no longer has PVC's and the other health effects of being kept hypothyroid with too little available( free ) t3 for all those years. However, her pediatric endo. never would have known as she never checked it and always just assumed that it magicaly converted within her body with no problems. She blammed all her health issues on "other" things which usually made me feel like a bad mom! (weight, diet, exercise, my imagination etc..) Since there is no gland and much of the cellular conversion process happens there normally, then the process is now more dependent on other areas in the body to convert the storage hormone t4 into the biologically active t3.( liver, brain, kidneys and fatty tissue). Since these organs are also very taxed/ busy with other functions, then it makes since to me that conversion might possibly be inadequate/effected in people who have no gland to assist with this (my theory).So, if the issue is the need for more t3, then why go through the broken back door to get what is needed and can be found in the front door? Desiccated hormone has t3 in it plus other things that are more closly related to human thyroid hormone(calcitonan, selinium, t4, t3, t2 and t1). Endo.s say that all that "other stuff" isn't important, however my daughter was certainly missing something on synthetic t4 alone and her body was trying hard to get our attention with all the progressing symptoms. The heart palps were the icing on the cake for me! New doctor, new meds., new vitamins, new blood levels, new life!!!! I switched her cold turkey with the new doctor's guidance and blood work. Pay close attention to symptoms and add the desiccated slowly as Synthroid has a long 1/2 life and stays in the system longer. (decreases by 1/2 every week that passes) If you are low on t3 and your doctor won't agree to desiccated then many try adding cytomel to their Synthroid and usually do better when it is taken in smaller multiple doses (t3 burns off quickly) with a slight decrease in the Synthroid.. Naturethroid is working well here,  3 grains divided by 3 doses at four hour intervals) (1 grain at 7:00am, 1 grain at 11:00 and 1 grain at 3:00) She is not hyper in any way and is having no hypo. health issues (most importantly, no PVC's! ) I hope I've been of some help to you. It's been a journey and a learning process. People make it sound so easy , so cut and dry. The body is an amazing ly complicated system that depends on proper hormone levels just as a car depends on oil. Everything is connected and effected if one tiny link in the chain is missing. We can't grow a new thyroid gland, however we can make sure that we are getting proper thyroid replacement for our unique and individually specific needs. Simply being in "normal " range does not cut the mustard for many. Symptoms and levels must be equally fine tuned until you find your "optimal" range/ bulls eye! It takes a special doctor who is not afraid to think outside the box if need be and will take the time and effort to make sure that you are well. It doesn't always fit inside that neat little "normal" box with thyroid issues and can take time, patience and effort of both parties (doc. and patient) to get it right.I hope that your doctor will be this type. Good luck and God Bless!

[DAbbey]

Hi everyone! I am 31 and I was born without a thyroid as well.  I am amazed that there are so many people that were also born without one - it's just that I have never actually met anyone else with the same condition.  I have been taking synthroid since I was two weeks old.  I felt fine and had never had any issues (weight, or any other side effects) up until I got pregnant with my daughter. My daughter was born with a fully functioning thyroid. Since my pregnancy (6 and half yrs ago), I have felt awful and can't seem to lose the weight. I eat very well and workout.  I find that I am absolutely exhausted, even I consistantly get 8 hrs of sleep.  I have a hard time concentrating, I always feel like my brain is foggy, and my motivation is considerably lacking. I'm trying to get my endocrinologist to swith me to nature-throid or armour. Has anyone on here switched from synthroid to a natural medication like nature-throid or armour?  Also - has it helped?

[magpieannie]

Thanks for responding! That's very interesting!  I'm so glad that your children were born fine (with a thyroid). My daughter's was also discovered with the new born screening and she began Synthroid (synthetic t4) at the age of 3 weeks. She did fairly well on it as a baby and pre-schooler, other than constipation. At the age of 4 or 5 she began putting on weight and always hungry (especially for carbohydrates). By 8 I had to change her to desiccated thyroid hormone as she began having Premature Ventricle Contractions (pvc's) in her heart. I found out that she was not converting enough of the t4 into t3. She now gets t3 in the desiccated (Naturethroid) and her levels are better, with no more heart issues(pvc's). She is doing much better now in so many ways. I do a lot of reading and research on it all now, and don't always just take the doctor's word as I once did! They are only human and there are many approaches and points of view when dealing with thyroid issues. That has been the hard part of all this as the "mom"! It definitly is a journey! I am determined that she will be as healthy as possible! Thanks again for sharing! God Bless!

[j_lee]

Hey- I was diagnosed when I was 10 days old with Hypothyroidism...I slept most of the day, didnt really take any milk, yet gained plenty of weight and had bulging eyes and course hair..a nurse came round and they admitted me to st lukes Hospital and the doctor took one  look at me and knew what it was. Dr Minford was the specialist in the area and he gave us the information about being 6 of us in the area.When I was diagnosed they had only been doing the heel ***** test for 2years and I was the sixth person..I was diagnosed and put on a low dosage of thyroxine, I had blood tests every week, then every 2 weeks ect..I have had blood tests every 6 weeks to 6 months and my dosage adjusted accordingly..i have only ever been on thyroxine and it has now stabilised around 200mg. There was never any record of anybody in either of my parents familys and my parents also had no idea how this had happened...During my first pregnancy my levels were really low and I took 300mg and durin the second my levels were low so I had to take 250mg.. Both my children have been tested and have no problems what so ever.
I have had a very normal up bringing...if i wasnt getting enough thyroxine I gained weight, was very tired, cold...had a short concentration span and was forgetful and my hair would be coarse...but when i was getting enough thyroxine evrything was perfectly normal.. I hope this helps...

[magpieannie]

Hi j_lee!  Any ideas as to why 6 people in your area were born without a thyroid gland? How did you find this out? Is it a matter of puplic record somehow? We live in N. Texas and my daughter was born in 2000 without a gland also. I wish I knew why? My husband and I have no known thyroid issues, and my two older sons were born just fine! I really have no ideas as to why??? Maybe I was hypothyroid during pregnancy and did not know it (low t3)? I just read an interesting article about this on thyroidscience.com (Pregnant Women and their Newborns:Among the victims of t4 replacement). My husband has an aunt who has Graves disease and another one with low IQ and died of organ failure, so I've often wondered if it was genetic from his side? But after reading this article, now I think it might have been caused by me being temperarily hypothyroid during pregnancy and not knowing it. At any rate, I don't want this to be handed down to my future grandchildren, so it is imperative that the hormone levels be kept high (especially t3) during my daughters future pregnancies, when she grows up and gets married someday! She is no longer on Armour. We had to switch her to Naturethroid 3 months ago due to hypo symptoms developing on the reformulated Armour. She is doing much better now and we will be having blood work tomorrow. What med do you take and what are some of your experiences growing up with this? My daughter just turned nine, so we have a ways to go. My goal is for to feel good (no joint and muscle pain, have no PVC's (heart palps)  to be able to control her weight with a good diet and exercise, and to be a healthy happy kid. We no longer have heart palps with the addition of the t3 in desiccated hormone, muscle pain and joint pain are much improved as of late, food (carb.) cravings are better, now we just need to quit gaining weight! She begins basketball soon, so that will help with the additional exercise. Any advice you can pass on to us would be so appreciated as we continue on our thyroidless journey!

[j_lee]

Im 25 and was also born without a thyroid...I was born in West Yorkshire and was the 6th person ther 2 be born without

[stella5349]

Thanks for posting jc-

I am talking with magpieanne and she would love more info on this situation. Please PM her.

[jcrocc]

i was born with out one and i'm 27 now. i lived a difficult life with my weight gains going up and down my peak was 298 then with some will i dropped the weight got into boxing and had a pretty out standing college boxing carreer. winning a national siliver medal, two all american awards and caption of 2006 UNLV national championship boxing team. the reason i speak of this is not to brag (well maybe a little its a huge accomplishment) but to say man if i could do i feel anyone can. just trying to cut weight for a fight was a fight in it self. People dont understand the hard parts of this. Right now i weigh 205 with 9% fat. all i'm saying is if your son has problems with weight when he is older and it gets him to where i was with a ton of depression print this, let him read it and you can find on the web the team pic of unlv boxing he can see that he can have his life. it just is up to him. anyquestions hit me up at ***@****..

[magpieannie]

My daughter is eight and born without a thyroid gland. It can be very stressful!!! It was caught in her New Born Screening and she began synthroid at 3 weeks of age. No growth retardation in her body or brain. She is beautiful and bright. Began putting on weight at 5 and heart palps (Premature Ventrical Contractions) at 8. Switched to Armour recently.Weight and heart Palps (PVC"S) better, however now having weird aches and pains (random needle pocking shock sensations and leg and ankle aches). Anyone out there have any advice for this stressed out mom???

[hannah1234]

i was born with out one too! this is great to know so many who have the same condition... im 19 now but ill be 20 soon.. im concerned that when i have kids that they willl struggle with it too since my mom had hyperthyroidism (had to have hers stopped- now its hypothyroid) and my grandma has hypothyroid.. so it is genetic, obviously, but i dont want my kids to have to deal with the endless **** of meds and blood tests. im on levothyroxine.... .175 mg for now though my levels change all the time. im tired alot and hungry like all the time and have little physical energy unless i make myself do it.

but this is so cool to mmeet so many of you who also dont have a thyroid.

[deputy_ty]

Sweet 30 years of having no Thyroid I found others! They do exist! I am 30 years old and was born without a Thyroid and now I am on 300 mcg. I am a Deputy Sheriff and a part time little leauge baseball coach. Went through high school playing sports and fixing cars and chasing girls. I have lived a great normal life (besides the normal life downers!) just take the pill in the morning and get my levels checked every 6 months and I'm good to go. I did get pretty sick a few years ago and it was related to the no thyroid thing, ya know tired all time, un-explained aches and pains, swollen tounge ahhhhhhhh fun times! lol Anyhow Im excited to see that there are others out there that don't just question it "I didn't know that was possible" Shut up what do you know we no thyroid folks rock!

[i_kid_u_not]

hi all!!!!

omg!!! i didnt know there were so many people born without a thyroid!!!...soooo glad i found this site!!!  i was too ...born without a thyroid an like alot of u i ain met anyone born without one either!! iv always woundered how? and am i the only one?  i am 20 now i have no children but am frightned that when i do decid to have children in the future that i will struggle with it?

laura.

[nicolew08]

i was born without one as well...im 18 now..

ive never meet anyone else either, i wish i could this kind of intrigues me...!!!!

[utahmomma]

I found some info on being born without a thyroid (even an old string from this forum).  Maybe it will help.

http://thyroid.about.com/cs/basicinformation/a/nothyroid.htm
http://www.medhelp.org/forums/Thyroid/messages/254.html