Help with possible pituitary tumor. So lost.

[lumaluma]

Hello, desperate 22 year old female here. I've posted before but was not able to follow up on my post due to doctor's stalling. Here's the deal:

I have all kinds of symptoms, including lactating breasts ( doctors saw it in action at my University ) and bad headaches, blurred vision particularly in the left eye. I am unable to gain weight at ALL ( 91 lbs ) and have terrible memory loss. I feel barely alive because my mental activity feels next to nil. it is affecting my schoolwork. I have asked my University doctor for an endocrinologist referral. She has done breast exams and found dense breast tissue on my right breast, of which she seems most concerned about. They DID do a blood test testing Follicle Stimulating hormone, Luteinizing and Prolactin. She claims it is normal. I have the test results right in front of me. However, she refused to refer me to an endocrinologist, despite having promised it after my last three appointments. Instead, I was referred to my old gynecologist.

Please, I am so desperate for help and do not know where to turn. She will not refer me to an endocrinologist, and no endo will see you without a referral. Is there a patient advocacy group I need? Is there any where I can turn on this issue?

I have the test results, is there anyone on this forum who is able to read them?

Thanks so much for your time everyone. You were very helpful in my last post.

Take care,

Natalie

[lumaluma]

Thanks or the advice. Been reading my arse off hehe. I know that some doctor's feel their ego is threatened if a patient's educated. I'll keep that in mind. I will be returning to my gynecologist in a few days to ask for a referral. Will update you all. If that doesn't work out, returning home temporarily is the next option.

Best wishes,

Natalie

[rumpled]

Here - I check in as I am CL... plus others can chip in as well.
They just added a doctor's search function here which hopefully should help but they don't separate neuro-endos from the regular ones... boo.

Read up yourself - an educated patient helps but be careful what you say to docs, some don't like that anyone knows anything while some do know the internet exists and people look things up.

[lumaluma]

Thanks a lot rumpled and everyone else. :) Much more helpful than doctors information. I figured hormones run in loops; I can feel well sometimes on the menstrual cycle...which hardly lasts long then back to  hell.  Will check out sites and inform my family. I will update you all too. What is the best way to stay in communication?

-Natalie

[lumaluma]

Instead, I was tested by gynecologist for lupus, mono and Epstein-bar. I have been tested before. I am going to leave for my parents in Kansas to try and find an endocrinologist, or a neuro-endo. There you don't have to fight for a referral. Thank you all for the support. If you are still around, I will update you if it will help others.

What tests should I ask an endocrinologist for? Cortisol and growth hormone? I have had a very basic thyroid panel done in the past, which my gynecologist told me was normal.

[rumpled]

They did not test all your hormones. No thyroid, and no cortisol or growth hormone. You have to get a copy of the tests to know the normal ranges - it is printed on the lab results and every lab differs.

I would try to at least call around and see a neuro-endo with your symptoms - you are not being tested effectively.

[testdeprived]

to the thread starter  i know how frusterating this is!! ive had the peripheral vision tests as well, and they came back normal and my eyes are blurred as well..however mine blur randomly at odd times thoughout the day....what i found disturbing is that the endo i went to lst week said that that wasnt even a symptom of pituitary disease....one thing youll need to elarn is,even if you do get the endo refferral dont get discouraged if theyre rude to you,or dont find what is wrong with you...most have THE SAME KNOWLEDGE COMING OUT OF MEDICAL SCHOOL AS THEY DID ENTERING IT.

[testdeprived]

i dont think the type of doctor matters. my primary care ordered me a pituitary mri on a 3t with dynamic contrast. i think its more of finding a caring doctor than finding a doctor who specializes in neurology,vs endocrinology

[lumaluma]

Thank you for your responses sirs/madam's. She is a general practitioner, so this is probably why she has not covered the basics. My biggest problem is GETTING a referral. My test copy is right in front of me, in fact. I have been suffering for a while. I have politely asked for referrals, and have played the game of going back to her for multiple appointments, all with my sole goal of receiving a referral. So I can get an appointment with a neuro-opthamologist without her?

She tested my peripheral vision as well--it was normal. This, however, doesn't change the fact that my left eye is blurred.

Here are my test results if anyone can help out. I'm not sure how to read these. Wish I did:

Follicle Stimulating hormone: 8.8
Luteinizing hormone: 9.3
Prolactin: 11.7

They also did a metabolic panel, saying it's also normal and a complete blood count. There is too much to possibly post here. I do not know normal levels.

She tested me while I was on my menstrual cycle, if that helps. This is also the first time the University has done this test for someone they told me in the lab. Thanks again for your responses.

[rumpled]

Lactation can be caused by other hormones other than prolactin - so your doctor is very mis-informed. It can be thyroid and it can be cortisol so you really need a very good work up to cover all the bases.

I am afraid I respectfully disagree with neurologists - as they cannot order a proper pituitary MRI and they do not treat pituitary. I would however see if you can find a neuro-endo or neuro-opthomologist to take you in and test you.

Get copies of all your tests.

[enzymelover]

If you can make an appointment with a neuro-opthalmologist for a vision exam, this doctor can refer you to an endocrinologist, which he hopefully would, considering your symptoms.
Does your gynecologist have a different diagnosis for your symptoms?

A good neurologist may order an MRI for you. It helps to have information on pituitary disorders in your hands when you go to these appointments. So many docs are clueless.
It may be helpful if you could post your test results.  I think you need more testing done to present a clearer picture of your case.