September 25, 2012 at 11:26 pm #315
Hello, I am new. I have been trying to figure out how to purchase the new book, but have been unsuccessful. If anyone can help with that I would be so greatful! I want to get in as much research as I can. 🙂
This coming Friday morning (9-27) I have an appointment with my doctor to ask for an MRI to check into Empty Sella. Is there anything in particular I need to know to ask for?
I have had terrible pituitary function for about 6 years now and I am hoping that this might be the answer to why. My pituitary issues were so bad initially that I was diagnosed with bipolar disorder. After a drawn out failed attempt to treat the illness in the standard way I came upon a doctor that believed bipolar (and some other mental illness) to be a result of endocrine issues. I have been taking pituitary supplements since then and have been cleared of all mental illness. However, I still feel I experience lowered pituitary function though not nearly as badly as before.September 28, 2012 at 4:44 pm #2968
Update: My doctor was happy to order the MRI (he treats quite a few hypermobile). He understood what I was asking for with no problem. He is not sure if my insurance company will give me a hassle or not (we have not had the best of luck with them over the years), so he approached it in a generalized manner and is prepared to order a close up of the pituitary if there are any irregularities. Not looking forward to the cost, but I am so sick of the hormonal issues that I am experiencing.October 10, 2012 at 11:51 am #3031
Well, empty sella does not appear to be my issue, but they do suspect lymphocytic hypophysitis. I have a thickened middle third of infundibulum to approximately twice sagittal dimension of more proximal and distal thirds of infundibulum. I’m not exactly sure what all of that means just yet, but hopefully I will learn that today. I lucked out and will get to see a neurologist in a few hours. Somebody canceled their appointment right before I called them. Saved me 3 weeks of worry time. I will update later when I learn more.October 10, 2012 at 1:51 pm #3033abbilouParticipant
Hope you have a good appointment.October 10, 2012 at 4:25 pm #3035
Just returned from my neurologist appointment. Basically the stem attached to my pituitary gland is twice the size it should be. It could be a tumor or it could be lymphocytic hypophysitis, which is inflammation of the pituitary gland due to autoimmunity. The symptoms are very similar with both, but they are treated differently. If it’s a tumor they remove the pituitary gland, if it’s autoimmunity they use steroids. Either way there would be tons of side effects. Go figure. 😉
Next step is to find an endocrinologist and see what they say about it. I’m not sure at this point if it would be worse to treat it or not treat it. I am incredibly unhappy with my endocrine system function as it is, but the side effects could be quite severe. Is joint hypermobility considered an autoimmune illness? My immune system function is very poor.October 11, 2012 at 6:06 pm #3042
Link between lymphocytic hypophysitis and mast cells if anyone is interested. With the work Dr. Diana has put together this does not surprise me at all. It makes total sense. How to stop the mast cells though… http://www.ncbi.nlm.nih.gov/pubmed/11888089October 13, 2012 at 5:51 am #3047
Appointment with a mast cell specialist Wednesday 10-17-2012. Still no word from the endo office. Either I was refused a referral or they are super busy.October 25, 2012 at 12:00 pm #3075
Finally got in with the endocrinologist last week and the small amount of lab work they could perform has been read. They have found that my thyroid dysfunction is autoimmune after performing a TPO antibody level. In 4 weeks they will test my pituitary further and look for antibodies there as well. I have been on pituitary supplements for 3 years so I have to get all that stuff out of my system before they can check levels. They could verify that my pituitary is still functioning via those tests which does seem to indicate autoimmune rather than tumor. At some point I will get a few of my MRI pictures posted in case anyone else finds themselves in this situation. It’s very hard to on a standard MRI, but the pituitary MRIs make it very clear.
Mast cell specialist says I do not have mast cell disorder because I do not experience Anaphylaxis, but do have severe environmental allergies. He will have me starting allergy shots next week. He also says I do not have EDS because I’m not freakishly hypermobile and I’m not tall and lanky. Important to note here that he studied marfan syndrome, not EDS. It’s very obvious to myself and my orthopedic/pain doc that I am at the least hypermobile type. With the older women in my family experiencing heart and colon issues… maybe a worse variety. I am short and chunky as are they. We range from 4’11 to 5’3.November 3, 2012 at 6:23 am #3096
A mast cell specialist whom specializes in Mast Cell Activation Syndrome, the kind I believe Dr. Diana might have, feels I have enough symptoms to investigate my case. I will see him, Dr. Afrin, Jan. 14th. I am so thankful for all of the work Dr. Diana has put into this. I never would have investigated MCAS if I had not found this site.
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