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Off Topic........prolactinoma


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#1 kiwimum03

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Posted 01 February 2008 - 09:36 PM

This is not Scleroderma related, but it is a health concern, and I just can't stop thinking about it and worrying.

I am sure I have mentioned in some previous posts a long time ago that I have abnormal lactation (galactorrhea).
Well this has been going on for a year now. But all my Prolactin tests have been normal.
My last one was done on Wednesday and my doctor tells me its through the roof my level was 3487, normal range is 200-500.
So she starts talking about brain tumors, namely Prolactinoma and MRI's.

I was kind of relieved in a way to get high numbers because I have been testing for Cushing's (another type of Pit tumor) as I have all the symptoms, but so far all my tests have come up negative even though I have every clinical symptom.

She phones me when I get home to tell me that the Motilium (Domperidone) that I take can raise your Prolactin levels in rare cases. So she backtracked very fast, so I have gone off the Motilium and now have to wait until I can retest on Wednesday to see what the level is..............ugh, its so frustrating.

The trouble is, I had abnormal lactation started BEFORE I ever went on Motilium, which is why we have been testing the Prolactin levels for the last year. So although it looks like the Motilium has bumped up the Prolactin, it doesn't explain to me WHY I was leaking in the first place before I ever took the meds.

Guess I am just terrified that the results will be normal and she won't send me to the Endo.

sorry this is long, I don't actually expect anyone to read it, I know its totally off topic, I am just tired of thinking about it all.

hugs,
Irene in New Zealand

#2 Kim T

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Posted 01 February 2008 - 10:18 PM

You are a 32 year old with 3 boys. My nurse practitioner says it's not that uncommon. I haven't nursed my only child for 14 years but I still have a significant amount of discharge. My prolactin levels have been tested a couple of times but only went up when I took Reglan. Some women are just that way. I wouldn't worry too much.

Kim

#3 kiwimum03

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Posted 02 February 2008 - 10:32 AM

Thanks kim, you have made me feel alot better!!!!

Hugs, Irene

#4 Sweet

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Posted 04 February 2008 - 11:34 AM

Hello my NZ buddy!! (My kids should be arriving in 2 months!)

I found an article on galatorrhea that you may find helpful.

Loves!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 kiwimum03

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Posted 04 February 2008 - 04:45 PM

Thanks for the link Pam, it was a great explanation.

I had my second prolactin blood test this morning, but will have to wait 2 days for the results as my doctor is away tomorrow.
Hopefully the results have come back down to normal and it was just the meds pushing the numbers up so high.

Not long till the big move!!!!! April will be a nice time of year for them to come here, what part of NZ are they coming to......I am sure you told me, but I have massive brain fog lately!!! ;) You will miss them so much, thank goodness for Skype!!!!!
Most of my siblings and extended family live overseas, so we get a lot of use out of our webcam!

Hugs,
Irene

#6 Sweet

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Posted 05 February 2008 - 04:05 AM

Hi Irene,

I'm not sure if they will be in Hastings or Hawks Bay. Family in both and they are not sure yet.

I just heard about Skype and need to learn more about it, and how to use it. It will be a must!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)