Hi all, my story is a long one but here it goes. I had parathyroid surgery in May as mom also had hers in April. We are trying to get doctors to THOROUGHLY test me for MEN1 tumors, but so far prolactin has only been tested etc. I think one was 24 or 25. Anyway, I had a dexamethasone suppression test with the 1mg pill, and went in to get only cortisol drawn the next day at 8:00 a.m. My test came back very abnormally low, below the normal lab range. They didn't eleborate on what that means, but said that's a normal response and don't know what else to do. FYI, I had my cortisol test high before on a lab, but not overly high. Doctor's just ignore it.
Here's my symptoms: Behind the left eye pain ( pain comes at random, sometimes even wakes me up from REM sleep and can be horrible) breast lactation ( never been pregnant I am 24 female ), terrible fatigue, headaches, right nostril leaks this weird sticky completely clear fluid ( nothing else comes out of the other nostril ), eye muscles get stuck, stomach hair growth, foot hair growth, breasts, chest etc., thigh rashing, I feel despondent like nobody will ever help me get to the bottom of it. I need a doctor to run a full panel of blood tests to check for the MEN1 tumors ( as they suspect that's what it is ) but all they love to check are my calcium, parathyroid hormone, and prolactin, all of which are normal. Then why am I lactating and feeling so horrible?? I haven't had a urinary cortisol or anything else done either. Anybody have advice?
FYI, I am a thin girl..I weigh only 93 lbs. Is that why I am not taken seriously?
To answer your last question - your doctors don't have a clue about what they are doing? That is my best guess.
The test for MEN1 is a genetic test - so you could go see a geneticist - or pay for the test yourself - but it does cost a lot out of pocket. I would suggest that if you are not being seen at a pituitary center or by a neuro-endo, that you try to get in to see one.
Elevated cortisol *normally* has as a symptom as obesity and you are not fitting the mold - however, I have met some size 2 people with Cushing's so it is possible. Some people don't gain. I had it myself and I did not gain the first at least 6 years with it (my tumor was known from 1992 - I did not get treatment until 2004). The lactation can be either from the cortisol or from another issue - like thyroid or something else. I had a separate tumor and my levels were largely normal.
Have you had a pituitary MRI?
Re the dex test - I failed all of them and still had Cushing's. I know many like me. The action of ACTH takes the pituitary out of the picture - so it is more like a test of LOCATION not exclusion - and pituitary is more common than adrenal so lots of us *fail* it by suppressing (like you I suppressed all the way down) and later find we have pituitary source.
You need a better doctor. Re the headaches - are they better if you lie down? Read up in the health pages!
Thanks hun for responding. I have had a pituitary MRI...radiologists said it's normal. I don't think the doctor ever read it? I don't think they even tested ACTH, just cortisol. I had the genetics test..it was negative--however my doctor wanted it repeated at an outside lab, not the research lab where it was done, where the % of accuracy is lower.
My headaches don't care what I do, unfortunately. I am new to the site..where should I read further? Any doctors anyone can recommend?
So it was a dynamic pituitary MRI - not just of the pituitary - but done correctly so you were not pulled out for the contrast? That ups the odds of the smaller lesions showing up as they take images showing the uptake of the contrast.
Very rarely do endos read films - the radiologist does and I know many people that have normal films read by surgeons that find tumors. So labs are far more important than imaging. Heck, my tumor at this point cannot be seen but my tests are way off the charts - so even teeny little things can cause issues.
There are many many many types of MEN - so while MEN-1 and -2 are the major types there are lot of subtypes. I invented my own - MEN-JEN (my name is Jennifer LOL) as I am panhypopit after two pit tumors, thyroid tumors and gyne issues up the wazoo but the docs don't find that funny. But my point is that one single genetic test will only rule out that one type but you can have the zillion others. You need a smarter doc.
The health pages are off to the right - some of the sites have doc lists so start there.
Ok. Thank you. I had MRI with and without contrast. I believe they stopped the MRI and did the IV while I was in there.
My current doc is a surgeon not endo because I refuse to see them as they are terrible. I don't think he read the MRI, though. The hospital is too scrambled. They think it might be MEN1, yet won't do the whole range of tests as MEN1 can produce many tumors. My doc says a negative genetic test doesn't mean you don't have MEN1--it just means it missed a strand they may not have discovered yet. I'm just not getting anywhere with them though as there are more hormones than just prolactin and cortisol.
I sometimes have to lie down simply from extreme fatigue. Ok, I'll read the others to the right. Did you personally have a good doc/center that helped you? I am the midwest and willing to do anything.
I don't typically push doctors. It is very personal - a doc that may work well with me may rub others the wrong way. The doc that finally diagnosed me is loved by some, absolutely hated by others! So sadly you have to run through a few endoduds yourself to find one that fits you. I would not put travel out - I went to the west coast and still go pretty far to this day for a decent doctor.
They don't know, as far as I know, all the different types of MEN so they may have to diagnose you on history, not the genetic test. I have a friend diagnosed on that. She did a family tree and could show that the families were always small and people did not live long all the way back for a while - showing a pattern - and close family members like you have also have endocrine issues.
Fatigue is a huge issue. I have what I call *forced naps* where the fatigue overcomes me and I just have to sleep no matter what. Shopping for groceries does it - and weather too. Today is a bad day.
Thanks for taking out the time in your day to give me this advice...I am sorry about the fatigue, I can relate. It's overwhelming and I try to resist it, but in the end have to succumb to it. I want to travel...my first para surgery was in California because no doctor would believe I had parathyroid disease. I fought that battle for 2 years. Still have lactation etc. though. I need this resolved soon...I am not at a point in my life where this can go on forever--then again, nobody probably is. That's why I asked about doctor recommendations. Just feel I got the short end of the stick, I guess. But every doctor is as so afraid to do full on MEN1 testing ( hormonal blood tests ) for the tumors. As I've learned, anything else is useless in a way. :(
I would not say other tests are useless - since testing for MEN is, as I understand from some others, not an exact science at this point. So you need to have the other tests to support a diagnosis.
I went to doctors listed in some of the websites in the health pages - so research around and we can PM about names.
There can also be concurrent issues - I learned the hard way that I had other issues but I was very nicely treating myself with my own steroids produced by my own tumor. Cut that off and I was a mess and I am disabled from the whole mess. Plus they tend to call everything a gyne issue if you are woman anyway. Lactation is not fun - had that for about a year - no one told me it hurt!
Alright. Thank you for the honest answers. I will look at the doctors...this is just taking so much time and has been going on for years...this is why I am impatient. I just want to find a doctor that people actually knew "thought out of the box" and such. I have been all over..my mom had her surgery in a separate state as well... that's how difficult it was to get treatment.
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