Brain/Pituitary Tumors Community
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Lymphocytic Hypophysitis

Anyone know anything about this?  My pathology report just came back-- over a month later!!-- saying this was the cause of my tumor.

NB: there's nothing scarier than a voicemail from your brain surgeon himself calling a month after your surgery to tell you your pathology came back and you need to give him a call.  Ugh.
3 Responses
Avatar universal
They never like to leave voicemail - but on the plus side a call is much better than having to schedule a visit!

I have not heard that term before... have you looked it up? The last word has to do with pituitary... I think!
Avatar universal
I know very little, but so far, what I know is it's extreme inflammation of the pituitary, occurring 9:1 in women, and almost always during or just after childbirth.  It's exceedingly rare (only 100 cases in literature), but I've found a person or two with it on these boards.  

That's the reason my "tumor" grew so quickly: it wasn't a tumor, it was just the gland, exploding with inflammation, but you couldn't tell the difference on the MRI's, nobody could.  My surgeon said mine was the largest he'd ever seen.

The prognosis is similar for both adenomas and this condition (again, I think)-- still possibility of lifelong hormone replacement, still possibility of recurrence.  With the hypophysitis, however, there's a chance, when it's small, before it begins to invade the sinus/optic chiasm, to treat it with steroids.  I think most folks post-surgery are kept on steroids for about a year or so; I'm still battling my steroid dosage (I can do 10mg/day, but I think really, you know, for quality of life, I should be somewhere around 12.5...the endo dropped my dosage to 20, with the idea of tapering pending my labwork coming back, but 20 was still producing pretty hyper symptoms...and weight gain), and my surgeon said that pit damage might be why I'm having such a hard time tapering.
Avatar universal
I know of Sheehan's syndrome which occurs with childbirth - so maybe this is another name for it? Nope...

I did find this:

Sheehan's syndrome occurs as a result of ischemic pituitary necrosis due to severe postpartum hemorrhage. It may be rarely seen without massive bleeding or after normal delivery. Improvement in obstetric care and availability of rapid blood transfusion coincided with a remarkable reduction in the frequency of Sheehan's syndrome particularly in western society. But it has recently been reported more often from well-developed countries. It is one of the most common causes of hypopituitarism in underdeveloped or developing countries. Enlargement of pituitary gland, small sella size, disseminated intravascular coagulation and autoimmunity have been suggested to play a role in the pathogenesis of Sheehan's syndrome in women who suffer from severe postpartum hemorrhage. The patients may seek medical advice because of various presentations ranging from non-specific symptoms to coma and the clinical manifestation may change from one patient to another. Failure of postpartum lactation and failure to resume menses after delivery are the most common presenting symptoms. Although a small percentage of patients with Sheehan's syndrome may cause abrupt onset severe hypopituitarism immediately after delivery, most patients have a mild disease and go undiagnosed and untreated for a long time. It may result in partial or panhypopituitarism and GH is one of the hormones lost earliest. The great majority of the patients has empty sella on CT or MRI. Lymphocytic hypophysitis should be kept in mind in differential diagnosis. In this review, the old and recent data regarding Sheehan's syndrome are presented."

Pit damage is never fun - so I hope that you have a really good neuro-endo. If it is just inflammation, the steroids may just work on that - but if it is a tumor, steroids won't do a thing - and you may need a stim test to see if you need them forever.

I lost some of my tumor weight post-surgery, but never got back to pre-tumor weight yet... ugh.
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