Hello, I'm a 35 year old female recently diagnosed with a pituitary microadenoma. I'm looking for some guidance. I have been told it is approximately 3mm in size and appears to be non-functioning according to my test results. I have been to two appointments with an endocrinologist. The tumor was found incidentally after a brain MRI I had after having a concussion.
I have been battling (almost daily) headaches for as long as I can remember and get 6-8 migraines per month, sometimes more. I have tried so many migraine medications and none of them seem to work. The other headaches only go away for short periods and come right back. I was just told at my second and potentially final visit with this endocrinologist that he was 100% POSITIVE the headaches/migraines I have been experiencing have nothing to do with this little, incidental tumor I have and I should just follow up in a year for another MRI to check the size of the tumor. I was really hoping for some answers and some hope, but now I feel more hopeless than ever. I'm not even sure if there is anything else that can be done since he says that my test results "checked out." I'm going to post my numbers below, but if anyone has any advice, please let me know. Thank you.
Free T4 1.1
Dhea sulfate 78.7
Ur creatinine 105
U cortisol/creat 2.5
First of all, your endo cannot be an expert in pituitary as it is well known that headaches and migraines DO occur with pituitary lesions and the size of the lesion is not a factor in the headaches.
Second - is that all the hormone testing done? If so, you have to (well you would anyway) find a pituitary center - you need a NEURO-ENDO who knows how to test for the pituitary.
Without ranges it is hard to tell (every lab, every country differs) and you did not put any markers to not if there was high or low - but even so, there are other hormones to check, and one hormone check is NOT enough to rule a disorder in or out anyway as things can pulse or cycle and you did not list any symptoms other than headaches so I cannot even guess.
3mm is pretty small - and the next MRI may not even pick it up - as MRI slices at 3mm at it may fall between the slices so you may get told it is gone (it probably is not). I urge you to find a better doctor and get all your past blood work put together (get copies of everything going forward) and even pictures and see a new doctor.
Thank you for the information. Yes, that is all the testing that was done. I didn't mean to post more than once, so please excuse my two prior posts. (Apparently there is no option to delete when you post by mistake...) Some other symptoms I have been having are unexplained weight fluctuations. About 2 years ago I suddenly lost around 30 pounds over the course of 6 months with no change in any habits and without trying. Over the last year I have put on about 30 pounds despite trying to lose weight, eating healthy and walking for exercise. I have a problem with my hair falling out and that seems to be getting worse. I constantly feel tired, but despite feeling tired I can hardly sleep. My doctor has even tried giving me sleeping pills and they didn't work. Every night I take 600mg of Gabapentin and 75mg of Topamax to help reduce the frequency of my migraines... They don't even make me drowsy. Those are my main troubling symptoms at this time.
When the endocrinologist told me with a straight face he was 100% certain the headaches were not related I almost told him I was 100% certain he didn't know what he was talking about, but I kept it to myself and kindly asked him what his OPINION was based on. He didn't give me a straight answer. My instincts were telling me I needed a different doctor, but I wanted to seek reassurance.
My question is, after reading that others have had similar experiences, what do the doctors have to gain from this misinformation? Why wouldn't this endocrinologist simply refer me to a neuroendocrinologist if he has no intention of treating me anyway??? Does he really not know that he doesn't know enough about my condition to be able to treat me effectively? It just seems incredibly counterproductive....
"Wired but tired" and weight issue often points to a cortisol issue - and those are very difficult to diagnose (been there, done that). Sadly, doctors are trained that the tumors are rare, that they won't see one, if they do see something it is likely incidental (not causing symptoms) so it is the training that is the issue - so they do not think to refer you on. And yes, they don't know enough.
Do get your data together - and learn how to test. Timing of testing is important as well as how to eliminate lab error. That held me back from diagnosis for years (ACTH in the bin, not in the centrifuge for instance is a huge error).
Re deletes - that is just how this site works - all fixed!
Thanks again for your help. I think I will seek help at the Emory pituitary center in Atlanta. If anyone on this forum has experience there, please feel free to post any comments, recommendations, feedback, etc. This appears to be my closest and best option at the moment.
Keep us posted. If you don't get help there, make sure you get copies of everything. Make sure you understand everything and that they pinpoint the type of lesion (I tend not to accept incidental - it can be non-functioning but those tend to grow) and know treatment options and if something needs to be done now or later.
Find out of other hormones are involved as well. It may take several visits and several sets of testing. Cortisol can cycle (although some centers deny this...).
I went back to my primary care physician this week and let her know I wanted a referral to the Emory pituitary center. She ended up telling me it would likely be a waste of my time and they wouldn't be able to do anything for me that she and my other doctors weren't already doing. I told her it upset me when the endocrinologist told me he was 100% sure the headaches and migraines could not be related to my little tumor and she said he might be right. She went on to say they aren't going to go in and take out the tumor unless I'm having severe symptoms such as loss of vision or double vision. Her synopsis: they can't do anything for me, either. I'm teetering on whether to go on and get the referral or not at this point. Is anything she is saying likely to be true? I felt like she was saying lots of people are walking around with pituitary adenomas and they don't even know it and they are just fine so I should stop worrying and keep letting her treat my symptoms... Help... Frustrated... :(
There are papers on the pituitary network page that perhaps you can print off - they are written by doctors - and take them into your doctor. So maybe she will take it from another expert (after all, we patients have zero cred...)
Yes, some people wander around not knowing they have these lesions. This is thanks to the stupid study that they dissected cadavers and found 20 to 25% had pituitary lesions - and the conclusion was pit tumors MUST be of no consequence since those cadavers did not complain (they did not relate cause of death to anything pituitary related - which could be anything) therefore pituitary tumors are benign and nothing - and this attitude prevails a lot.
Cannot blame you for being frustrated - that is why it takes so long for everyone to get diagnosed and treated.
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