Prolactinoma Support Group

Hi there. Going through everything for me took a while. Went in to see my family doctor about it originally, got blood work done and waiting for those results, then I had to wait to get an MRI appointment, then wait for the results of that, and each time seeing my doctor again about the different results. Once it was known what I had though and all the results were in my fam. doc. gave me a referral after that for an Endo specialist but it was like a 6 month wait before I saw him. It was waaaaay worth it though to wait for the Endo specialist for this matter. Hang in there! These specialists are in high demand it seems. :)

I'm not sure where everyone is from here but it's my daughter, 16, she has a large prolactinoma, it was only 5 days after the bloodwork that my pediatrician sent me for the MRI, the radiologist at the imaging place actually called my pediatrician the next morning with the results, my pediatrician set me up with an appt for the neurosurgeon 3 days later and the endo 9 days later, the endo set up the appt with the cardiologist for a week later, needed the echo before she started the meds. Why don't you just take your bloodwork and make an appt with an endo, I hate hearing stories like this,everyones health is important , it doesn't help people to be stressed out more than what they are already feeling. Please try to stay positive

Hi, Thanks for the replies, Crystal, getting the bloodwork back is usually the next day for me for the last 8/9 months it's been the debating between everyone on wether to MRI still not had one hmmm. However this latest GP was pushing for them to do one my levels compared to alot of peoples on here are still pretty low at 55 but the symptoms I am finding hard going.
Gmdm, I would find an Endo myself if I was at home in the UK however we are posted with the army in Germany so all has to be done through them I seem to unfortunately have chosen a time of cost cutting to actually need something off them.
Again thanks for the replies helps to have people who understand and don't think I am overreacting or nuts. x

You are not nuts and not overreacting. The sad truth is that there is a great deal of ignorance and a lack of empathy in the medical profession about prolactinomas and pituitary tumors in general. Of course endos are highly specialized. That's why they are there to deal with endocrine issues, which you have. Make a fuss. Badger providers. I gather your military "liaison" operates like an insurance company trying to minimize expenses by routinely denying or postponing care. My HMO misdiagnosed my symptoms for 14 years. I can't tell you how many times I was told to "get a life," "stop focusing on the pain and fatigue - they had no medical basis," or intimations that I was mentally ill. It wasn't until I switched out to a PPO and picked my own doctor as a GP that my complaints were taken seriously. By the time the MRI confirmed the presence of a tumor, it was 2cm.+. I always thought there was something terribly wrong going undiagnosed. There was.

Just a thought about dealing with the Army... Try getting help from your local congressperson back home. I used to work for the local one here and leaning on government agencies to take constituent concerns seriously was part of my job. It costs the congressperson nothing and can generate a great deal of good will if it works. Government entities dependent on congressional appropriations take such complaints to heart when they come through a representative that can vote on their budget.

Didn't mean to sound rude about finding doctors,
If all the doctors that I am using didn't refer
me from one to the next I don't think I would have know where to start to find them. I am
thrilled to death with everyone of my daughters doctors, it may be because they are all pediatric. As far as the military goes with health care they should make health care their number one priority for the people that serve this country.