potsiebarbie Posted April 3, 2019 Report Share Posted April 3, 2019 My ENT just called with my brain MRI results and while they didn't find a reason for my hearing loss they did find a small growth on my pituitary gland. Anybody have this or know anything about it? I'm trying hard not to freak out about it. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 3, 2019 Report Share Posted April 3, 2019 Did they call it a granuloma or something else? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted April 3, 2019 Report Share Posted April 3, 2019 I would say not to freak out til you have an actual name for the growth. It could be anything. You may have to a have a biopsy to be sure what it is. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 3, 2019 Report Share Posted April 3, 2019 If it is a granuloma, they may try oral meds to make it go away. I went through something similar. It sounds scary, but don't freak out yet. Of course I'm a hypocrite. I freaked out too. Turned out it was for no reason. Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted April 3, 2019 Author Report Share Posted April 3, 2019 2 hours ago, KiminOrlando said: Did they call it a granuloma or something else? The ENT called it a growth. He is gonna order a different MRI to get a better look. I have appointments with an endocrinologist and neurologist coming up this month and next for unrelated matters so maybe they will be of help? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted April 4, 2019 Report Share Posted April 4, 2019 5 hours ago, potsiebarbie said: The ENT called it a growth. He is gonna order a different MRI to get a better look. I have appointments with an endocrinologist and neurologist coming up this month and next for unrelated matters so maybe they will be of help? They may be. If you can get a physical copy of the test you had that showed the growth, make sure you bring that with to those doctors. That way they can look at it and not the report. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 4, 2019 Report Share Posted April 4, 2019 @potsiebarbie - when I go to my neurologist I go to the radiology department of my hospital and ask for an actual copy of the MRI - just the report is usually not enough for a neurologist, they like to look at the actual imaging, which comes on a disk. Quote Link to comment Share on other sites More sharing options...
JimL Posted April 4, 2019 Report Share Posted April 4, 2019 15 hours ago, KiminOrlando said: If it is a granuloma, they may try oral meds to make it go away. I went through something similar. It sounds scary, but don't freak out yet. Of course I'm a hypocrite. I freaked out too. Turned out it was for no reason. I have one in my lung that hasn't gone away and my have gotten a little bigger. No one ever said there were meds to treat it. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 4, 2019 Report Share Posted April 4, 2019 Lung is different than pituitary. The oral med is for pituitary granulomas and it doesn't always work. I have rheumatoids in my lungs. They aren't going to do anything about it. Sometimes it is best to leave stuff alone because the process of 'fixing' it is worse than the original problem. Quote Link to comment Share on other sites More sharing options...
JimL Posted April 4, 2019 Report Share Posted April 4, 2019 59 minutes ago, KiminOrlando said: Lung is different than pituitary. The oral med is for pituitary granulomas and it doesn't always work. I have rheumatoids in my lungs. They aren't going to do anything about it. Sometimes it is best to leave stuff alone because the process of 'fixing' it is worse than the original problem. I have one low in my left lung, almost 2cm. Don't know how I got it. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted April 4, 2019 Report Share Posted April 4, 2019 Have you had the 24 hour urine testing done for Endocrine stuff? I looked up the testing recommendations at work on UptoDate and this is what it says: "We suggest measurements of serum prolactin (lactotroph adenomas), insulin-like growth factor-1 (IGF-1) (somatotroph adenomas), and 24-hour urinary free cortisol (corticotroph adenomas). We recommend MRI as the single best and usually only imaging procedure for most sellar masses. Certain MRI findings suggest a greater likelihood of some kinds of sellar masses than others. As an example, finding a mass that is separate from the pituitary gland generally indicates that the mass is not a pituitary adenoma. ●We recommend evaluation of hypothalamic-pituitary hormonal function whenever a sellar mass is encountered. Hormonal hypersecretion is caused only by pituitary adenomas. Consequently, the demonstration of hormonal hypersecretion identifies the sellar mass as a pituitary adenoma and also identifies the type of adenoma. (See 'Hormonal evaluation' above.) ●The extent of the evaluation in a patient with an incidentally discovered intrasellar MRI signal abnormality (pituitary incidentaloma) depends upon its size. If it is larger than 10 mm, we recommend the hormonal evaluation as described above (see 'Hormonal evaluation' above). If it is smaller than 10 mm and the patient has no clinical findings of pituitary dysfunction, we recommend measuring only the serum prolactin concentration. (See "Incidentally discovered sellar masses (pituitary incidentalomas)".) This is from UptoDate Clinical manifestations and diagnosis of gonadotroph and other clinically nonfunctioning pituitary adenomas Quote Link to comment Share on other sites More sharing options...
JimL Posted April 4, 2019 Report Share Posted April 4, 2019 One of my brother in laws had one. He had it removed and has to be on some hormones for the rest of his life. In his case I think his hands and feet were growing and he had peripheral vision issues. Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted April 5, 2019 Author Report Share Posted April 5, 2019 20 hours ago, StayAtHomeMom said: They may be. If you can get a physical copy of the test you had that showed the growth, make sure you bring that with to those doctors. That way they can look at it and not the report. I'm gonna try to get it before the appt but what is funny is that the neuro office only wants the report. Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted April 5, 2019 Author Report Share Posted April 5, 2019 13 hours ago, Pistol said: @potsiebarbie - when I go to my neurologist I go to the radiology department of my hospital and ask for an actual copy of the MRI - just the report is usually not enough for a neurologist, they like to look at the actual imaging, which comes on a disk. The neuro office wants only the report- not the disc. Should I be worried? Lol I'm gonna try to get both. Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted April 5, 2019 Author Report Share Posted April 5, 2019 1 hour ago, MeganMN said: Have you had the 24 hour urine testing done for Endocrine stuff? I looked up the testing recommendations at work on UptoDate and this is what it says: "We suggest measurements of serum prolactin (lactotroph adenomas), insulin-like growth factor-1 (IGF-1) (somatotroph adenomas), and 24-hour urinary free cortisol (corticotroph adenomas). We recommend MRI as the single best and usually only imaging procedure for most sellar masses. Certain MRI findings suggest a greater likelihood of some kinds of sellar masses than others. As an example, finding a mass that is separate from the pituitary gland generally indicates that the mass is not a pituitary adenoma. ●We recommend evaluation of hypothalamic-pituitary hormonal function whenever a sellar mass is encountered. Hormonal hypersecretion is caused only by pituitary adenomas. Consequently, the demonstration of hormonal hypersecretion identifies the sellar mass as a pituitary adenoma and also identifies the type of adenoma. (See 'Hormonal evaluation' above.) ●The extent of the evaluation in a patient with an incidentally discovered intrasellar MRI signal abnormality (pituitary incidentaloma) depends upon its size. If it is larger than 10 mm, we recommend the hormonal evaluation as described above (see 'Hormonal evaluation' above). If it is smaller than 10 mm and the patient has no clinical findings of pituitary dysfunction, we recommend measuring only the serum prolactin concentration. (See "Incidentally discovered sellar masses (pituitary incidentalomas)".) This is from UptoDate Clinical manifestations and diagnosis of gonadotroph and other clinically nonfunctioning pituitary adenomas No. Maybe the Endo will order it. I had 24 hr urine that showed I'm wasting magnesium. I wonder if they could be connected. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted April 6, 2019 Report Share Posted April 6, 2019 I could not find any relation, but hope you get some answers soon. I am learning with my own journey that there are so many different roads, so many roller coasters, and when already feeling like poo, it is exhausting! Good luck!! Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted April 6, 2019 Author Report Share Posted April 6, 2019 15 hours ago, MeganMN said: I could not find any relation, but hope you get some answers soon. I am learning with my own journey that there are so many different roads, so many roller coasters, and when already feeling like poo, it is exhausting! Good luck!! Darn! I was hoping I didn't just have a bunch of different random stuff. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted April 6, 2019 Report Share Posted April 6, 2019 It sounds like magnesium wasting would be more related.to the kidneys, but alongside into the adrenal and renin-aldosterone system. Maybe related? Feel like we all end up being out own research team! Quote Link to comment Share on other sites More sharing options...
TCP Posted April 7, 2019 Report Share Posted April 7, 2019 I have a macroprolactinoma, a tumour on my pituitary gland. They are mostly benign. Wonder if that is what you have? I had most of mine removed last year. If you need any info just message me. They should be able to tell you what it is. I see a team consisting of Neurosurgeon and Endocrinologists. I've been seeing them for two years now. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted April 22, 2019 Report Share Posted April 22, 2019 Any news? @potsiebarbie Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted April 27, 2019 Author Report Share Posted April 27, 2019 On 4/21/2019 at 9:07 PM, MeganMN said: Any news? @potsiebarbie Nope. Lol That's the health care system for ya. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.