Prolonged lactation after weaning

Since I’ve spent the last few months spinning my wheels with doctors to absolutely no avail—and frankly, feeling like I'm hitting a brick wall—I decided it was time to start this thread. I want to see if anyone else out there is dealing with this same frustrating mystery. To give you some context: I have two kids. My oldest son is three, and my youngest will be ten months old soon. Ever since I had my firstborn, my milk production just hasn't shut off—it's still going. As for my youngest? I haven't even breastfed him for over nine months now. On paper, some things look "fine." My prolactin levels came back at 194, which supposedly falls within the normal range. My thyroid hormones are also technically fine, yet my thyroid is visibly enlarged. On top of that, I’ve started experiencing vision field defects and some breathing difficulties—which everyone initially dismissed as asthma, though they aren't so sure about that diagnosis anymore. Oh, and I have about six swollen lymph nodes around my neck. If anyone has any insight or advice on what might be happening here, I would be incredibly grateful for your thoughts...
Best,

I personally dealt with milk leakage for over two and a half years after I finished breastfeeding. It only recently finally tapered off. Even though my prolactin levels were technically within the normal range, they were hovering right at the upper limit.

In my estimation, swollen lymph nodes aren't actually linked to lactation, especially since, from what I can gather, you aren't experiencing any other symptoms besides the discharge. You likely have some sort of underlying infection or something similar going on right now. You should probably get a complete blood count done to check your CRP and white blood cell levels—just to see if there is an actual infection present.

I went through the whole milk supply stimulation process myself, and honestly, everything went smoothly for me—it wasn’t just about the occasional let-down, either. I could pretty much pump up a full bottle of milk whenever I felt like it without any trouble at all...

Well, look, I’ve never had much luck with manual expression, and heaven knows what would have happened if I had actually attempted using an electric pump 🤷 during my mammogram—it was like a literal flood. They took a biopsy, and based on those results, everything is perfectly fine.
Oh, and they did mention some sort of breast condition to me, where lactation acts as a symptom. Typically, though, that kind of discharge comes from just one breast rather than both simultaneously. I can't recall the specific medical term they used. Regardless, every doctor I've consulted has dismissed my situation as nothing to worry about.
My advice? Try not to mess with your breasts too much; specifically, don't go testing them to see how much milk you can produce.

If your lymph nodes remain swollen despite having normal blood work and no clear signs of an infection, then if I were in your shoes, I would head straight to a specialist to have those lymph nodes properly examined.

Chris Howard3 said:Since I’ve spent several months visiting doctors to no avail—and I still can't figure out what's going on—I decided to start this thread to see if anyone else is facing similar issues. I have two children; my oldest son is 3, and my youngest will be 10 months old soon. Ever since I had my first child, my milk supply hasn't dried up. I haven't even nursed my younger son for over 9 months now. My prolactin levels came back at 194, which is within the normal range, and my thyroid hormones are fine—though my thyroid is visibly enlarged. I've also experienced some vision field defects and difficulty breathing; they initially thought it was asthma, but now they aren't quite sure... plus, I have about six swollen lymph nodes around my neck. If anyone could offer some advice, I would be truly grateful...
Best regards,

Have you consulted with an endocrinologist yet?
What kind of vision field defect are we talking about?
Is the milk leaking spontaneously, or only when pressed? (Some women "express" themselves daily, which can actually artificially prolong lactation).
Has an MRI of the pituitary gland been performed?

Increased milk secretion is typically seen with none breast changes, and as a rule, it tends to be bilateral.

No, if that were actually the case, wouldn't those changes show up clearly on an ultrasound?

And was there even an examination performed on the breast area at all?

If we were looking at a pituitary issue, her prolactin levels would be elevated, which simply isn't the case here.

goldenskipper13 said:But wouldn't those changes show up on an ultrasound?

Has an ultrasound of the breasts even been performed yet?

If we were looking at a pituitary issue, her prolactin levels would be elevated—which simply isn't the case here.

Fibrocystic breast changes are actually quite visible on both ultrasounds and mammograms.

I am suggesting an MRI of the pituitary specifically because of the loss of visual field.

I haven't had my pituitary MRI scheduled yet, and I’m stuck waiting until October for an appointment with the endocrinologist—plus a breast ultrasound sometime in September. Basically, my entire medical situation is just one long, exhausting waiting game for an endocrinology specialist. I actually first booked that appointment back in May because my cardiologist—who I saw due to my heart rate spiking up to 115 bpm—suggested I get checked out. Now, here’s the weird part: I’m not even breastfeeding, but since I have no idea what’s going on with my body lately, I tried expressing some milk a few days ago... and yeah, there was a significant amount there. It wasn't just a little discharge; it was actual milk. On top of that, I've been feeling this constant tightness in my chest that occasionally radiates pain all the way up to my armpit—could that be caused by the pressure from the milk buildup?
Best,

I have to admit, reading through this thread has me feeling a little anxious. I finished breastfeeding over a year ago, yet if I apply any pressure to my nipples, milk still leaks out. I’ve tried expressing manually, but I can’t get more than a few drops to show up. My breasts feel completely normal to the touch and my period is regular and predictable; my only real struggle right now is the weight that just refuses to budge. When I saw my OB-GYN about nine months ago, she mentioned that this kind of prolonged lactation can actually stick around for quite a while. That said, since I’ve been feeling pretty sluggish and just generally "off" ever since I gave birth, I think I’m going to go see an endocrinologist and schedule a breast ultrasound very soon.

Angela Wright, there is truly no reason to be afraid. Once you have finished nursing, it makes perfect sense to go ahead with a breast exam just to be safe, but if everything checks out and your prolactin levels are within the normal range, then you don't need to fuss over it any further. Furthermore, things like lethargy and weight gain can often be linked to thyroid issues; I would strongly suggest having your doctor check your TSH, T3, and T4 levels.

Honestly, I just can't shake this constant feeling of something being... off—ever since my second child arrived. In principle, though, it’s not like my milk supply ever dried up; my oldest is already three and a half, and my youngest is about a year and ten months old now.

Is there seriously nobody here who has any idea what we might be looking at? I’m genuinely stumped—does a prolactin level of 194 even qualify as "okay," regardless of whether there's some underlying issue with the pituitary gland?