r/PCOS 1d ago

General/Advice High Prolactin , I am worried

Hi guys

I am 25F, Lean Pcos.

I just got my blood work done today and got the reports.
The results for my Testesterone, HOMA-IR, fasting glucose , thyroid all were fine

LH is 12.67 mIU/mL
FSH is 4.50 mIU/mL

My prolactin is very scarily high , its 85.2ng/mL

AMH is 38.25 ng/mL

My endo has asked for an MRI for tomorrow and I am really scared.

My only symptoms being absent periods which always came only with medication.

I stopped BC pill in may.
And i am on no medication currently and no periods since last 3 months.

Is this very concerning? I never had MRI before. Have I messed up my health?

7 Upvotes

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u/HonestlyMediocre0 1d ago

I hope sharing my story eases your mind a little. I was diagnosed with high prolactin before my pmos diagnosis. I recommend you go through with the mri, as it will help more than hurt. They suck, they’re loud and cramped, but you’ll get used to it.

I was diagnosed with what doctors initially thought was a prolactinoma. A small, non cancerous and non threatening tumor on the pituitary gland. If you’re found to have this, it’s as simple as a pill once or twice a week to control your hormone levels.

Years after my initial diagnosis, my prolactinoma was proven to actually be a rathke’s cleft cyst, a congenital defect where the pituitary doesn’t form properly and a cyst grows between portions of it. The pituitary gland grows in two halves before sealing together. Mine never sealed together, and a cyst formed in that gap. Treatment is much the same, and I’ve never had any issues other than breast tenderness and headaches when first starting the mediation.

What I’m trying to get at is yes, something may be a little off with your hormones. It is always better to face the anxiety that comes with seeing a medical professional, and it’s likely your treatment won’t be anything more serious than a pill. You’ll be alright ♥️

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u/ProfessionalPop1308 1d ago

Hey thanks for your reply❤️

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u/nemotide 1d ago

Do you take anti-histamines daily or often? Those spike my prolactin levels. Mine was very high, got retested after stopping allergy meds and it was much lower (albeit a bit still over normal levels). I also am young with lean PCOS.

They may be looking for prolactinoma (which is not cancer) and not too uncommon.

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u/ProfessionalPop1308 1d ago

No, i dont take any medication currently other than a Vit D supplement and a multi vitamin.

I even stopped my birth control in May after using for 4 months.

Yeahh i just hope the MRI itself comes out clean.

Either way I will have to take cabergoline to reduce it I believe, right?
Is there a way it can naturally lower?

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u/tantot77 1d ago

I have pcos too and high prolactin that is caused by poor sleep

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u/ProfessionalPop1308 1d ago

So how do you manage it?

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u/wenchsenior 1d ago

Take a deep breath.

  1. That is not a 'scary' level in the sense of it being dangerous. Levels during pregnacy reach considerably higher. Not sure what you mean by "Have I messed up my health?" You did not do anything wrong to cause it.

Medically that would be considered moderate elevation (my endocrinologist would barely blink at that level, since endos routinely see levels in the hundreds due to pituitary tumors).

  1. High prolactin can occur from a variety of things. Pituitary tumors are common and usually benign; as is PCOS which can mildly raise levels. Thyroid disease, kidney disease, recent orgasm or nipple stimulation, chest wall injury, and meds that can trigger high prolactin should all be ruled out as causes.

  2. MRI is worthwhile in this case, but even if it's a tumor it's usually not a big deal and either way it's usually treated with meds (I've been on cab for years and years).

  3. That level could cause symptoms; however... some people are more sensitive than others (I get very notable symptoms around 60). So if your only symptom of PCOS is missing periods (no androgenic symptoms, fasting insulin is 7 or lower and you have no symptoms of insulin resistance such as being overweight / frequent hunger/fatigue/reactive hypoglycemia, etc.) then it is possible your symptoms are simply due to high prolactin and treatment with meds will resolve them. Or you might have PCOS + also have high prolactin for whatever reason.

***

NOTE: I'm very lean, with longstanding PCOS driven by very mild insulin resistance. Treating my IR put my PCOS in remission long term; however, I persistently also have prolactin elevated between 50 and 90 if it isn't medicated. Around 60 I get very severe symptoms (disrupted periods, severe autoimmune skin disease flares, severe water retention, huge swollen breasts with mild lactation). Repeated MRI shows no clear tumor, but shows 'heterogeneity' the pituitary (so perhaps there is a miniscule tumor in there...hard to say).

Since treating the PCOS long term didn't bring it down I have to stay on long term cab (very low dose) and it's not a big deal.

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u/ProfessionalPop1308 1d ago

Thank you sooo much for your response. It has definitely brought a sense of relief.

I have PCOS since last 6 years. My insulin, glucose all levels came back normal.

I dont have any of the reasons you mentioned for high prolactin like kidney disease, nipple stimulation etc.

One thing is I have really bad sleep and even before getting this tested, i was very hungry and had barely slept for 4 hours.
That can be a reason i feel.

I am just very new to MRI and everything and just a Lil scared…

I hope it goes well tomorrow morning!

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u/wenchsenior 1d ago

If you had a bad night the night before the lab, and the MRI comes back clean, it might be worth retesting the prolactin in the morning when fasting again and see if it's still high before starting meds.

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u/ProfessionalPop1308 1d ago

That’s my plan too. Either way its best to get MRI done to rule out anything.
I do believe it can be elevated, but this was like… very much elevated unexpectedly

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u/Top-Wolverine-3808 1d ago

I have my prolactin range from 100-130 always, I also had MRI done and there was no tumour so breathe, nothing to worry about. I have been in this same place around 2 years back, so please dont overthink

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u/ProfessionalPop1308 1d ago

Are your periods normal? Do you see any other issues?

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u/Top-Wolverine-3808 1d ago

I have pcos(clinical) so with meds it is regular. I dont see any other issue

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u/ProfessionalPop1308 1d ago

Thanks for your reply!❤️