Doc dismissed my Pituitary Tumor

[Kookidoe]

Hi

I don't know if anyone can give me a bit of advice, or even just tell me their stories if anything similar has happened to them, but I need something to say to the endo when I go back next week...
About 6 months ago I started getting headaches and dizzy spells. I put it down to having a bit of a bug. Then a couple of months ago they got a whole lot worse, on some days I couldn't open my eyes properly due to the light sensitivity, I became so dizzy that I collapsed in work (resulting in being shipped off to hospital by paramedics) . I had started lactating by that point and (unsure if this is connected) I was getting a lot of pain in my joints, mainly my knees. My doc sent me for blood tests which came back normal, but she sent me for an MRI anyway which showed a 6mm pituitary tumor. I'd never heard of it before, so when I read up on the symptoms it made a lot of sense and I was relieved that we'd found out what it was. That all came crashing down though when I went for my first visit to the Endo. He dismissed the PT as being the cause of my symptoms, and when discussing the lactation he simply said that it can be caused by: excessive manipulation of the breasts, some anti psychotics, or street drugs...non of which I do/take. He did another set of blood tests and made an appointment for me to go back, but he pretty much said that if they are clear then he will just monitor it every 6 months.
I get and appreciate that doctors shouldn't prescribe meds loosely, but the fact is that I still have all of these symptoms which are effecting my life, I'm scared to drive in case I pass out and kill someone, and I need to give some answers or assurances to my work that my sick record isn't going to continue how it has for the past few months.

Any advice would be much appreciated as I'm not sure where else to turn.

Thanks

[mobatti]

Thanx 4 ur concern....U stay strong and look at it this way...it is really not about me at least or us---It is really about the negative being turned around to help others on a larger scale---Occupy doctors office's or whatever...We just have to understand that -We gotta take our health by force and not leave it in the hands of Practitioner's.  They are human, they get frustrated, sometimes they are as confused as-"popular Opinion" but they won't admit-They don't wanna admit when they don't.  We r crazy when they don't know...But we know our bodies....I am keeping u in prayer-That is the only thing working for me rt now...Have a blessed day!

[Kookidoe]

Thanks guys.
I went back to see the specialist and was told the same thing... They don't believe my symptoms are related. They have booked me in for more bloods and an MRI in March 2013! Other than that they have said there isn't anything else they can do. Not really sure where to go from here now, i feel like a hypochondriac bugging them all the time. He said it could be down to stress, but other than these symptoms which are obviously getting me down a bit, i love my life, i'm the happiest person i know. Will go back to see my gp n see what she says.
Mobatti, i'm sorry to hear u have gone through so much with ur health.
Thanks to everyone for you support and advice. Hope u are all having a good week. xx

[mobatti]

Dont let them give u a hysterectomy-- I have allowed that and I regret it... I have swithced my diet and my symptoms are milder.....getting better....

[mobatti]

I'd listen to rumpled....U r not alone mines is 5mm...and I've been thru the same bull....It is bull....We have the exact same episodes...My Alternative Doc says it is a prolactinoma......Anywho, I believe Rumpled is God sent.....We will stay Prayed about this...Have a blessed week....

[julie1221]

Definitely get a new doctor! I have a 3mm microadenoma, and have never been dismissed by a doctor!
Good luck!

[xavier99]

I had a piturtary tumor removed in 1971, had similar symtoms, the day I went to see a doctor and x-ray my head ,we made an appointment to see a specialist. I had the tumor removed and just take medication for the hormones I can not produce.

[rumpled]

There are some links in the health pages (lower right) to help too.
I had PCOS and a pituitary issue - but some docs seem to think you can have only one (1) issue ever and also if you don't fit into the box perfectly, well then you just don't have it!
Weird.
Keep us posted!

[Kookidoe]

Haha, thanks Rumpled. I'm sure I can find someone to vouch for me :o)

He also said that he wouldn't have diagnosed my polycystic ovaries either because I'm not over weight, despite the numerous cystic scans that are in my medical records from years of tests and issues. Hopefully I will see a different specialist next time. My doctor was quite shocked how dismissive he was.

[rumpled]

Ah yes - the *blame the patient approach* - I have heard of it... it is not a very good one, but it is out there and oddly popular.

Since you have an MRI that establishes that you have a 6mm lesion, and you have lactation, please call around to university centers around you and find a pituitary center - find a neuro-endocrinologist. You need to get under the care of a pituitary center. If it turns out that it is a prolactinoma, odds are that it can be treated with medications and most if not all of the symptoms can recede - but the meds that treat it do have side effects. The thyroid and other issues - uh - other than what that doc said can cause lactation - so that needs to be evaluated and tested. Just in case, bring someone with you to vouch that you are not a drug addict and don't play with your self (not all neuro-endos are great either...) and get copies of everything for several reasons - one, in case you need to move on to another doctor, you need to know your results to check that you know what is going on and check that *normal* is in fact really *normal* and that the doctor is really doing the job that you want and you can track your progress over time.

Monitoring just will not cut it. This is easily treated - and should be!