Since no one else gets IT!

[foreverlostmom]

I have just been doing some reading and found my self very interested in what i came accross and tried sharing with my mother and mother in law and they noth just think I am nuts when I talk about this stuff so I decided to come where I am understood :)

My oldest has Craniosynostosis that unfortantly went undetected until he was to old to have a corrective device.  Don't ask me why because I am a paranoid woman and took my kids to the dr for everything.  But I was not told of this condition until he was almost 4 when we started seeing his current doctor.  He is not as bad as some other out there with it and many don't notice it he has a pointed forehead instead of flat.

Anyways I was looking at the link between Craniosynostosis and sinus infections since he has them all the time and saw that someone with the disorder should see a endo so I then looked for the thyroid link to cranio and found this http://www.cdc.gov/ncbddd/bd/keyfindings/thyroid.htm.

When I was pregnant with him they ran my TSH amongst other routine tests and blood typing and it came back at 0.01 this is before any medication was in the picture.  I was never told of this result or anything to do with it only recently found out when I requested my records.  It is there on my pregnancy chart that they wrote on every visit hand written!  WHY?!?  This information should have been disclosed to me.  This could be the cause for my baby having this problem!  

My TSH has gradually increased over the past 7 years getting to 4.57 at it's highest which led to non treatment and much suffering since all the labs still go by 5.0 I had to beg for treatment and other testing.

I remember as a teenager I used to sweat like crazy and it always bothered me because it was embarassing and I was rarley tired.

I have the antibodies so I understand now why and what but why the heck was I never treated before why have both myself and my son slipped through the cracks?  I really want to get him into a endo and put it to rest with him I just want to know either way if he has a problem or not I have a few concerns but the regualr ped even as good as he is tells me he is to young.  He is almost 7.

Thanks for getting IT ;)

[foreverlostmom]

I called the first doctor I had seen in my pregnancy to get my results if there were any and they did do a tsh this would have been in the begining and it was 0.01 I asked why I  was never told or treated based on the test.  She said that it can be low in the begining but they should have retested it but never did.  I switched at 6 months to the doctor who delivered him and was then again tested and came back 0.01 and was never told or had anything done about it.  Only ever found out almost 7 years later!  This is crazy and very frusterating then when I had went back in complaining of hypo symptoms they never thought to look back and see where my numbers began at and compare to where they were.

Then on top of it my son has trigonocephaly from metopic craniosynostosis and needs a surgery he should have had at an infant at almost 7 years old!  And who knows if this has had any life long effect on him developmentally.  I shake my head in shame for the doctors that have treated myself and my son it really is disgusting.

[foreverlostmom]

Thanks Stella I owe it all to you :)  

[stella5349]

Sounds like you may be a good advocant on all this :)

I just love hearing from you and seeing how much better you are....  You're a very strong person and now that you are finding answers and getting stronger health wise... Your leadership is shining through here lately...

A little like me after I went through my personal trama :)

You keep reading girl..... we can always use a strong force digging through research material.