× These pituitary tumors (also called adenomas) secrete excessive amounts of prolactin and are the most common type of pituitary tumor seen clinically.

Female, high prolactin. Are CT scans always accurate?

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Replied by carolk on topic Female, high prolactin. Are CT scans always accurate?

You are so welcome! Please let us know how it goes! 
1 week 16 hours ago #10848

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Replied by GloriaRae on topic Female, high prolactin. Are CT scans always accurate?

Hi Carol, Thank you for your reply! I’m in Australia. I believe they said moderately elevated and in any case they just can’t see what else it could be as I don’t take medication and they truly don’t believe it’s PCOS. It’s relieving that if that’s what I have it is benign but still a bit overwhelming. I really appreciate your advice, in Australia you kind of have to be your own advocate and specifically ask for things otherwise nothing happens so I’ll just inform the GP that I’m requesting a specialist referral to an Endocrinologist that specialises in Pituitary. I can find one and specifically ask for that specialist so I’ll write a list of a few in the area to see if that makes a difference with wait lists. I might just out of pocket pay privately so it is quicker. I’ll be sure to ask them about their experience also. I’ll await the appointment on Thursday and then request to join the group for some more support and any physician recommendations. 
1 week 16 hours ago #10847

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Replied by carolk on topic Female, high prolactin. Are CT scans always accurate?

Hi There, unfortunately, your long road to diagnosis is not uncommon for pituitary patients. You are so fortunate that this second GP is putting the pieces of your puzzle together. Based on what you've said, I take it that you are not in the U.S. so your lab results are different from U.S. labs, in case anyone else posts about how high your prolactin levels are. What country are you in? MRI's are much more accurate than CT Scans, and contrast definitely helps enhance the view. I am not a medical professional, but what I know about pituitary disorders is if you do have a prolactinoma which is a pituitary tumor aka pituitary adenoma that hypersecretes the pituitary hormone prolactin, they are most often benign. The first line of treatment for prolactinoma is medication. There are 2 different medications that will lower your prolactin and often shrink the tumor. As far as seeing an endocrinologist (endo), one of the most important aspects of your care at this point will be that you are treated by an endo that specializes in pituitary medicine aka neuroendocrinologist. Not all endos are the same, most treat the more common endocrine disorders such as diabetes. Pituitary medicine is complex, so you need a specialist that treats many pituitary patients. You may also at some point need to consult with a neurosurgeon, and again you need a neurosurgeon that specializes in pituitary surgery. This is so important!! Just like you would not go to a general surgeon for heart surgery, you would not have someone do pituitary surgery that isn't an expert. They should have done 100's of pit surgeries. The PNA has a list of known pituitary specialists on their site, but most are in the U.S. They moderate a Facebook Pituitary Patient Support group that you can join and ask for recommendations for physicians in your area. In Facebook search for "Pituitary Network support group" and ask to join. Once you are approved you can post for recommendations for physicians in your area. If the MRI shows a tumor then hopefully you will get an immediate referral to an endo and you can request to be referred to a recommended endo.  Here is a link to information about Prolactinomas:  https://pituitary.org/knowledge-base/disorders/prolactinomas  Best wishes on your journey!
1 week 19 hours ago #10846

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Female, high prolactin. Are CT scans always accurate? was created by GloriaRae

Hi all, first off some background: Thank you for sticking through reading. I really appreciate it, I’m terrified. I am (26F) I have had menstrual issues from the beginning at 13. My mother started taking me to Doctors then as my periods were irregular and my nipples were extremely swollen. Doctors said “she’s just started, it will regulate”. It didn’t. I was diagnosed as PCOS and anovulatory cycles with anxiety and depression at 18. They would just give me something to start my period if I didn’t menstruate for more than 90 days. From there about 5/6 years ago things just went back to normal and another GP said the PCOS was misdiagnosed. I’m not overweight, no excessive hair, no acne, no signs and normal fertility. Even fell pregnant but didn’t have the baby as I was too young and it was unplanned (please don’t judge me). 2-3 years ago I started having irregular/not present cycles again with extreme fatigue, bladder issues (not being able to urinate) and kidney infections. I also noticed my left eye was not straight but pointing inward from photos and people telling me so with severe fatigue and headaches. I went to an optometrist and he confirmed I had vision loss in my left eye but only peripherally and the nerves in my right eye had taken over for the left.I have also always had extremely sore breasts but over the past year they’re a lot worse, heavy, and my nipples have again swollen. Also very veiny. Not pregnant. I had a head injury to the back of the head in December 2019 and the following day presented at emergency with slurred speech, memory loss, blurred vision and headaches which they attributed to post concussion syndrome as a CT scan showed no bleeding or stroke but the symptoms haven’t improved. 23 January 2020 I was in crippling pain in my lower right abdomen and went to emergency. I had an ultrasound and they confirmed a corpus luteum hemorrhagic cyst with mild internal pelvic bleeding and my right ovary was 32cc which “should have dissolved itself”. The clinical team also reported absenteeism seizures. 25 January 2020 I re-presented and underwent emergency surgery for a cystectomy. Doctors not concerned as they did biopsy and no cancer (I am positive for BRAC1 or 2 can’t remember which one was tested positive as my Mother passed from Breast Cancer).Unknown to me in December 2019 my general practitioner ordered prolactin bloods (I need to read things more) and they were elevated at 3230ng/100ml. Oestrogen also off.  She since took personal leave and I therefore didn’t receive the results until I went to a different GP for the post surgery check in 03 February 2020. He was a Skin Cancer Doctor filling in for my normal GP and brushed it off as the CT in December 2019 was normal. He printed 50 pages of history and suggested a new GP. I felt off, something wasn’t right. Went to a second GP on 09 February 2020 and he said he suspects this is all attributed to pituitary tumour and re-tested the prolactin. I have my appointment 13 February 2020. He mentioned an MRI and I feel I should ask for contrast? I also ordered the report from my Optometrist for the appointment to be on the front foot. Do you have any other suggestions for the appointment?Could the CT have missed the tumour as they weren’t looking for it specifically? No private health for an Endocrinologist and may wait 12 months in the public system where I live. Thank you for bearing with me. I’m just overwhelmed and need some guidance/support
1 week 1 day ago #10845

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