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My New Problem.....

kimis

By kimis
in Related Issues & Disorders

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kimis Collaborator
kimis
Posted

When did it all start? When I got diagnosed with Celiac Disease! The gluten free diet is a wonderful form of treatment, but two months after I started it...the problems came rolling in! My cheif complaint at first was a horrible headache that was deep behind my eyes. The first month of the headache was horrible. The doctors could not find anything wrong and family members were convinced I was creating these headaches all by myself. So, after my second brain MRI (this time with contrast) A pituitary microadenoma was found. YES! AN ANSWER TO MY HEADACHES! NO! NO! NO! The doctors (all 4 of them, my this is getting expensive) said my tumor was not causing my headaches and it is an incidental little nothing.

Okay, I have had all the blood tests, two MRIs, I must be crazy or suffering gluten withdrawl. So I just dealt with it, put a smile on my face, and went on living like normal (if crying yourself to sleep is normal).

Over the next few months I was gaining weight (I exersize and eat mostly healthfully), tierd all the time, losing hair, sad all the time,ect. Then I read a few posts on here about hypothyroid and rushed to my Dr. to get tested. After he argued that my thyroid was checked a few months back...he gave me the test and it came back posotive. I will get an ultrasound next week and then go from there.

I do not know yet what type of hypothyroidism I have. I don't know if my tumor is growing and effecting my thyroid, or if this is another autoimmune diseas. Hopefully...I will take the pills they want me to take....and my daughter will get her mother back. I'm really just sick to death about this never ending prosses of trying to feel better. It's like I have to be my own Dr. and tell my real Dr what to test me for. Why haven't we invented a machine that scans your entire body and finds all the problems? I guess all I can do now is just hope and pray that this will be the end. Thanks for listening to my sob story...I would love to know if you think I am missing something obvious.

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

Two thoughts...

1. Your symptoms do sound like hypothyroidism. I think it's great that you asked to be tested!

2. Did they check for thyroid antibodies? (TPO, TgAb) The pituitary gland produces TSH (thyroid stimulating hormone), so I would be worried that your TSH does not accurately reflect how your thyroid is functioning. If you don't have any thyroid antibodies that's good news... then the pituitary gland is your main problem. If you do have antibodies, then you should try to find a doctor who will treat you based on symptoms.

You might want to get on this website: Open Original Shared Link and ask for help. Things get a lot more complicated when the problem is not just with your thyroid.

  • 4 weeks later...
RollingAlong Explorer
RollingAlong
Posted

The Pituitary Network Association www.pituitary.org has a lot of helpful info and they feel that these sorts of issues are often handled incorrectly. "Incidental little nothing." is something they would probably disagree with unless you've consulted a pituitary endocrinologist, a true specialist.

If the tumor is affecting your thyroid, you can adjust the meds forever and never get it right. And those little tumors can have big effects.

Very best of luck with it; I admire your persistence.

Hankster Newbie
Hankster
Posted
When did it all start? When I got diagnosed with Celiac Disease! The gluten free diet is a wonderful form of treatment, but two months after I started it...the problems came rolling in! My cheif complaint at first was a horrible headache that was deep behind my eyes. The first month of the headache was horrible. The doctors could not find anything wrong and family members were convinced I was creating these headaches all by myself. So, after my second brain MRI (this time with contrast) A pituitary microadenoma was found. YES! AN ANSWER TO MY HEADACHES! NO! NO! NO! The doctors (all 4 of them, my this is getting expensive) said my tumor was not causing my headaches and it is an incidental little nothing.

Okay, I have had all the blood tests, two MRIs, I must be crazy or suffering gluten withdrawl. So I just dealt with it, put a smile on my face, and went on living like normal (if crying yourself to sleep is normal).

Over the next few months I was gaining weight (I exersize and eat mostly healthfully), tierd all the time, losing hair, sad all the time,ect. Then I read a few posts on here about hypothyroid and rushed to my Dr. to get tested. After he argued that my thyroid was checked a few months back...he gave me the test and it came back posotive. I will get an ultrasound next week and then go from there.

I do not know yet what type of hypothyroidism I have. I don't know if my tumor is growing and effecting my thyroid, or if this is another autoimmune diseas. Hopefully...I will take the pills they want me to take....and my daughter will get her mother back. I'm really just sick to death about this never ending prosses of trying to feel better. It's like I have to be my own Dr. and tell my real Dr what to test me for. Why haven't we invented a machine that scans your entire body and finds all the problems? I guess all I can do now is just hope and pray that this will be the end. Thanks for listening to my sob story...I would love to know if you think I am missing something obvious.

This is the place for replies. I would say to you that, in general, the more background and testing/diagnostic info, the better. I have received a provisional dx for Celiac about 10 days ago and have stuck pretty much to no wheat/barley or rye [i really love rye breads and GrapeNuts!!!]. Have gained about two pounds since then. I was diagnosed with hypothroidism at age 40/41 (20 plus years ago) and my meds for that have made a tremendous difference in QOL. Celiac is associated with hypothyroidism, as you may know, so why it took this long to diagnose is too bad. Definite symptoms for at least 10 years, maybe longer. Now I am also wanting to chase down any possible link (causal or associated) with the 'idiopathic' neuropathy' I've had for about five years. So, I would say to you, "Don't Give Up" and make sure you have competent specialists who are willing and able to treat you in a whole body way.

needtobebetter Apprentice
needtobebetter
Posted

What about Cushings ...do you have moon face, hump, big belly, anxiety, trouble sleeping, stretch marks..??

Dont want to put something else in your mind to worry you but people really get the run around from nhs with that I thought i had it and when you go onto cushings-support.com they all have seen loads of endos..

Mandyxx

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