Hello, I'm a 25 year old female and I was born without a Thyriod gland. I have just been told I have Chiari. What puzzles me is that I have been told that my small brain has not slipped it has grown this way makeing about an 10mm below my skull. I do wonder if when I was developing in the womb if these to conditions are linked. My mum did everything right during pregnecy and is amazed how this has happened. Does anyone esle no or have this same problem. Not having thyroid problems but totaly not having a thyroid gland. I no I am a rare person having no gland what so ever so will amazed if anyone esle is in the same postion. Please respond.
Hi and welcome to the forum! I am puzzled to hear of your rare condition, to have no thyroid. I have not yet heard of this, but I am sure you are not alone. I know you are not alone with the Chiari, you are in the right place.
It sounds like your skull quit growing before your brain was done, there for I would say they could be linked. I know the thyroid has a lot to do with your endocrine system which is vital in growth. I think you need to find a specialist to address your large 10mm herniation, if it is causing you a lot of symptoms. They can do a decompression surgery that can improve your quality of life if you are having issues swallowing or sleep apnea. Dont let your mum bet her self up over this, stuff happens that is out of your hands and your are a special person that is one of a kind! that isnt a bad thing, I am sure the result of not having the thyroid isnt a good but, your mom shouldnt feel like it was her fault.
There is a list of specialists here on the forum if you need to find some one in your area, there might be some other posts in the archives about others in your condition. Good luck to you and hope you find someone else out there!
I am not in the same situation like you but I do have Hashimotos.. I imagine you are on a high amount of synthroid or something like it to replace the hormone. I have to take 75mg of synthroid daily to make up for where my thyroid is lacking. Though it is probably a stretch going from no thyroid to just one that under produces, I have noticed that there has been A LOT of people with thyroid disease and Chiari. How they are linked, I couldn't say..
As far as what you were told about you skull, most of us were told almost the same thing. I was told that the back portion (occipital bone) of my skull did not grow correctly therefore it didn't provide enough space or that ledge for the cerebellum to sit on. Eventually my brain just grew out of the space and had to go somewhere. I was told by my NS that it could be caused even by the position that I was in in vitro. My mom wonders if it had anything to do with me being really late and having a very hard time in getting me out. The thing is, no one really knows...and the upsetting fact is that you can do everything right in pregnancy and things can still go wrong. Alternatively, some people do not manage to have a healthy pregnancy and then they end up having a 100% healthy baby. So no one should blame themselves...I know my mom has said that to me too and I told her how could it be her fault?
It is very mystifying to have two rare conditions..It would be interesting to find out if there is a connection. Take Spaceystac's advice and look into getting a good Chiari NS to look at your case.
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