by Anne Eglash MD, IBCLC, FABM
How do prolactinomas impact breastfeeding? A prolactinoma is a non-cancerous tumor of the pituitary gland which secretes excessive prolactin. Common symptoms are irregular menses, nipple discharge, headaches, and difficulty becoming pregnant. According to a recent summary entitled ‘Prolactinoma through the Female Life Cycle‘ they are the most common cause of a high prolactin level, possibly occurring in 27% of people, although many people will never have symptoms. They are most frequently found in women between the ages of 20-50.
Women with prolactinomas are often treated with medications such as cabergoline, which increase dopamine, because increasing dopamine decreases prolactin secretion from the pituitary gland. Many women are able to become pregnant once the prolactin level has been brought down to a normal range.
During pregnancy, most prolactinomas remain clinically stable and do not grow significantly, especially if they were treated with a dopamine agonist, radiation, or surgery before becoming pregnant.
What do you think are true statements regarding prolactinomas and breastfeeding, according to the authors of this review? (choose 1 or more)
- In healthy breastfeeding women without a prolactinoma, prolactin levels are lower postpartum than they are during pregnancy.
- Women who underwent a surgical resection of a prolactinoma before pregnancy have a 30% chance of adequate lactation.
- There are no absolute contraindications to breastfeeding as long as there is not symptomatic tumor enlargement during pregnancy.
- Breastfeeding women with a prolactinoma can take a dopamine agonist such as cabergoline and still be successful breastfeeding.
- Pregnancy may act as a treatment for pituitary adenomas, because up to 70% of women show remission of their prolactinoma postpartum, whether breastfeeding or not.
- Women who undergo dopamine agonist treatment (ie cabergoline) for 2 years have a 24-69% risk of recurrence after medication withdrawal.
See the Answer
All are correct except D
Prolactinoma through the female life cycle
Cocks Eschler D, Javanmard P, Cox K, Geer EB.
Prolactinomas are the most common secretory pituitary adenoma. They typically occur in women in the 3rd-6th decade of life and rarely in the pediatric population or after menopause. Most women present with irregular menses and/or infertility. Dopamine (DA) agonists, used in their treatment, are safe during pregnancy, but in most cases are discontinued at conception with close monitoring for signs or symptoms of tumor growth. Breastfeeding is safe postpartum, provided there was no significant growth during pregnancy. Some women will experience normalization of prolactin levels postpartum. Menopause may also decrease prolactin levels and even those with macroprolactinomas may consider discontinuing their DA agonist with close follow-up. Prolactinomas may be associated with decreased quality of life scores in women, and play a role in bone health and cardiovascular risk factors. This review discusses the current literature and clinical understanding of prolactinomas throughout the entirety of the female life cycle.
Milk Mob Comment by Anne Eglash MD, IBCLC, FABM
Prolactinomas are very common in women, and anyone who works with breastfeeding women will come across women who have questions about their history of prolactinoma, and how the prolactinoma will affect lactation. According to this article, 70% of women who had surgical treatment of the prolactinoma before pregnancy will have problems breastfeeding. It does not appear that we know the impact of dopamine agonist treatment pre-pregnancy on lactation outcomes postpartum.
From my experience, women with a history of prolactinomas have varied lactation outcomes. Some women have hyperlactation, some have a normal supply, and some have insufficient lactation. Perhaps it is the treatment pre-pregnancy that impacts the prolactin level postpartum.
Women who take cabergoline during lactation will not be able to continue lactation. Cabergoline causes a marked drop in prolactin, such that the milk supply drops precipitously, no matter how far along the mother is postpartum.
The good news from this article is that women with prolactinomas should not be prevented from breastfeeding. If they experience symptoms of pituitary tumor growth during pregnancy such as headaches or change in vision, endocrinology should be consulted on management of the tumor postpartum. And finally, pregnancy might be just what the doctor ordered, since a large % of prolactinomas resolve with pregnancy and the postpartum period.
Sally Wodicka
Gosh, I wish there was more out there regarding this. I just had a mom that quit her cabergoline upon conception. The pregnancy was ok, and she delivered by section, but she had basically no milk producing tissue in her breasts. I first thought hypoplasia, and maybe it was true along with the prolactinoma. She had normal appearing breasts, completely symmetrical with normal appearing nipples. She never made more than 5mls. She was over the moon about the pregnancy as she was misdiagnosed repeatedly for 5 years prior to treatment. But, she was visibly and understandably disappointed that she could not exclusively breastfeed. The baby became so frustrated at the breast, she eventually gave up and formula fed. Thanks for bringing this subject to light. I’ve been doing this almost 30 years, and I have to say- it was my first (known) prolactinoma.
MilkMob
Thank you for sharing this case. It might be that prolonged use of the cabergoline pre-pregnancy led to inability to produce a prolactin response for breast development during pregnancy and/or breastfeeding. We definitely need more research on this.
Eva
Hi,
I had also found out that I had high prolactin levels and my doctor had prescribed cabergolin for 6 weeks . I had conceived by maybe the 8th week or so. My pregnancy was all fine but I had very low supply of breast milk and finally had to give it up due to stress and I felt like my baby wasn’t getting enough.
Is this because of the cabergolin tablet ? I’m planning on having a second baby now. Is there any other alternative to cabergolin ?
Thanks
Eva
Katie Kelter
thank you for this post – i just saw a mom 9 days postpartum with low production and apparent IGT (large flaccid breasts which did not grow this pregnancy) with a history of infertility and a 2mm pituitary adenoma (mildly elevated PL levels in high 20s that required cabergoline for her to conceive). she also had low supply with her first child 5yrs ago (prior to the adenoma diagnosis – she wasn’t on cabergoline prior to that pregnancy).
do we know if women with untreated prolactinomas ever have low supply or only if they have been treated? in my patient’s case do you think it’s more the IGT than the prolactinoma treatment that’s affecting her supply? would domperidone be contraindicated in women with a history of prolactinomas? thanks!
MilkMob
From my experience, many women with a history of prolactinomas don’t make sufficient milk. Some do and some don’t. It is hard to say in the case you are presenting whether IGT is the main issue or not. I have used domperidone for women with a history of prolactinoma, and they have done fine.
— Anne
Lily IBCLC fro Israel
How does one know in which case it will be ok to use Domperidone with a mother who had a prolactinoma?
IABLE
It would be best to ask the patient’s primary care physician or their endocrinologist if they have one managing their prolactinoma
Reena
Hello !
I have a Mom with her 5th baby…a preterm
she has a pituitary adenoma ..took Bromocriptine last 4 times post -parturm to suppress lactation…this time she wants to BF as baby preterm. But has less milk output…Will starting Domperidone increase her milk output ?
will it aggravate the hyperprolactinaemia & the adenoma ? with frequent expressions itself she had some visual symptoms.
pls give your opinion.
thanks
IABLE
Domperidone only works if the the prolactin level is low, typically under 100 ng/ml. There are many reasons for low milk production besides low prolactin, such as insufficient pump frequency, insufficient vacuum, poorly fitting flange, medications, retained placenta, thyroid disease, low glandular tissue, etc. I typically check the prolactin first before trying domperidone, but I have easy access to performing a prolactin level.
If she had problems with low prolactin in the past, she would not have opted for treatment of bromocriptine to suppress lactation (unless she was given it empirically with few symptoms of secretory activation). Four doses of bromocriptine during past lactation would not have an impact on current lactation ability.
Sarah
Hi I have a prolactima and was on cabergoline since 2012 before being pregnant in 2016 oct. babies were born april 28. I used to pump 900 ml a day, now I am doing 500 because I am planning to stop in 2 weeks.
I had a scan a few months ago and the tumor has not grown.
MilkMob
Thank you for sharing this.
Anne Trokey
I have had prolactima for 20 years (diagnosed when I was 14). I just had my 3rd baby. I have been on medication for it since I was 16, so like 18 years. I produce SO MUCH milk that my babies can’t keep up and I end up donating TONS of milk. I have to actually start taking the medication again to dry up with each baby. My pituitary tumor has been gone for well over 10 years but still have to take medication or will feed a small army.
Kyra
Hi! I am the same as you, only one baby now but 1 year pp and wanting a second. I started the medication a few weeks ago but my oversupply hasn’t changed at all. How long did it take for yours to lower and get pregnant again???
LaConeha
Hi Sarah, did you continue the cabergoline throughout your pregnancy? I’m 7 days pp and still no milk. I took cabergoline to address my infertility issues and now am worried that I won’t be able to produce milk for my little one. I am currently supplementing.
Anne Eglash
I am sorry to hear this. I strongly recommend that you ask your physician to measure your prolactin level, to make sure it is high, such as over 100. Other causes of no milk on day 7 include low pituitary function, retained placental fragment, medication such as nexplanon or depo shot given in the first few days postpartum, or an ovarian cyst that secretes testosterone. Please share this with your physician.
Lindsay
So happy I stumbled upon this. I was diagnosed with a prolactinoma 13 years ago and have been taking cabergoline ever since, up until I was 7 weeks pregnant. After giving birth, I had very little milk supply and gave up breastfeeding after 3 stressful weeks of being attached to the pump. My endocrinologist told me I should have a higher supply due to the prolactinoma and sounded surprised when I told her I had basically no supply. Lactation consultants had no clue what a prolactinoma even was so they weren’t helpful either. Glad to know that prolactinoma can cause low supply as that would have saved me so much trouble and heartache if I had known upfront that breastfeeding may not be an option.
MilkMob
I am so sorry to hear about the stress you underwent with your low supply. Thank you for sharing your experience- AE
Steph
I was diagnosed with a prolactinoma 08/2015, began Bromocriptine shortly thereafter, became pregnant 02/2017, and had my son 10/2017. I have had a great supply breastfeeding, almost to the point of oversupply. Since my son began sleeping through the nigh and not feeding, I have had engorgement issues, which remain even though it’s been about 5 months. I am now worried about weaning. If my supply is already too high at night, will this continue to worsen as he weans? Will I need to get back on medication to stop my milk supply?
MilkMob
Thanks for sharing your situation. I suggest talking to your primary care physician or your endocrinologist.
It is possible that bromocriptine might be a reasonable strategy when you plan to wean.
Patricia Crawford
Hi, I had my baby on May 25th. I was on bromocriptine for 3 1/2 months when I found out about my pregnancy. It’s been really heartbreaking to me not being able to breastfeed. I have no milk supply. When I pump I just get few drops on each breast. Is there any difference in treating the prolactinoma with carbogeline or Bromocriptine? My prolactinoma was 8mm.
Thank you.
Daniela
I am 32 weeks pregnant and have just been diagnosed with a prolactinoma, endocrinologist is suggesting Bromocriptine, but he is saying that it would not be compatible with breastfeeding and that i would not be able to breastfeed my baby while on the drug. I’m searching for further information on this, and also i would like to read more about effective cases of breastfeeding in mothers with Prolactinomas and that have treated it with bromocriptine. I know some of those who commented here have had success, but wondering if there are any other studies I could look into?
MilkMob
‘Hi, I am sorry to hear about your diagnosis of the prolactinoma. Taking bromocriptine after you give birth will cause lack of milk production. I suggest talking to your endocrinologist about your interest in breastfeeding, to see if the doctor feels it is reasonable to not take bromocriptine until you are ready to wean.’
Tamica Smith
I have been diagnosed with prolactinoma for about 7 years now and never took any medication. My symptoms inluded milk production without being pregnant and I rarely got my period. I saw and endocronologist and decided to take cabergoline. I’m not kidding, literally 2 weeks after taking cabergoline for my prolactinoma I got pregnant. I had an emergency c-section. I was able to breastfeed with no issues and actually had an oversupply of breatsmilk. My son is 20 months now I I still nurse him in the morning and before bed.
MilkMob
Thanks for sharing your experience!
Rg
Hi, I was diagnosed with prolactinoma a few years ago. Took cabergoline and it helped symptoms (although never experienced lactation as a symptom) and became pregnant. Since giving birth I’ve had low supply, despite trying everything to help! You mentioned Domperidone as a treatment – what dose have you used for women with this issue? Is there any other research to suggest anything else which could increase supply? Thanks for your help.
MilkMob
I cannot say that domperidone would help you. It is best to be seen by a lactation specialist, particularly a physician breastfeeding medicine specialist, to figure out whether your low supply is related to having taken cabergoline in the past, or whether it is due to another problem. You can find a breastfeeding medicine physician at the Academy of Breastfeeding Medicine Website http://www.bfmed.org
Jker
Hello,
I found out I had a prolactinoma while I was trying to get pregnant and couldn’t. Took Bromocriptine (1.25) and was pregnant within two weeks, as soon as I found out I was pregnant (4 wks) I stopped taking the medication. I have been great at breastfeeding, almost to the point of oversupply. Our child is 8 months old and I am thinking of wanting another baby but would need to take bromocriptine again. I would like to continue nursing while doing so but I am torn about taking the chance that I wouldn’t completely lose my supply. Anyone else able to nurse while on bromocriptine at a very low dosage?
IABLE
If you take bromocriptine, your milk will dry up because it will drop your prolactin. I suggest taking this when you are ready to wean.
grace
Hi
I found out that I had hipophysial adenoma at 2011 one year after my firstborn because i didn’t have my period although i wasn’t breasfeeding. I was experienced galactorhea before pregnant but had menses every month.
I planned having second child 3 years after and taking cabergoline because bromocriptine inefective. I was pregnant but ended in misscarriage. I left untreated since for years ( almost 4 years) and my endocrinologist sugested I had to take my cabergoline because my estrogen and progesterone are very very low but my other hormones were normal.
My last cabergoline therapy made me pregnant and now I have my 5 months old baby. Fyi I was on c section both.
I am exclusively breastfeeding until now (for 5 months) but i think my supply become low. and i nearly give up.
IABLE
Thanks for sharing your story!
Namulondo Berna
I was diagnosed with a micro pituitary adenoma 3 years back,took carbegoline for 2 and 1/2 years ,conceived and gave birth by c-section.Baby is now 3 months,milk supply is ok. Do i have to take carbegoline again? if no/yes what will happen to the tumor bse i feel ok.Thank you
IABLE
I suggest staying off of cabergoline while you are breastfeeding. I don’t know your health history, but the typical reasons to take cabergoline for a microadenoma include symptoms such as headache, double vision, and infertility. Please check with your physician on this. Just 2 doses of cabergoline will nearly completely dry up your milk.
Nitin
Hi, I wish I had discovered this page earlier. Would have saved us some frustration and disappointment.
My wife had an elevated prolactin level and the doctor prescribed cabergoline to help us conceive. We conceived almost within a month’s use of cabergoline and the doctor promptly asked us to stop the medication. Our baby was born on the last day of 2018, healthy and weighing 3.25 kg.
Fast forward to today, we are struggling with the baby being underweight. We felt the milk supply wasn’t enough for the baby but the doctor (a paed) has strongly discouraged us from going formula. My wife was given perinorm to increase the milk supply, and to stop after 5 days of use. Today, she expressed and found she only had about 30 ml of supply after 2 hrs of prev feeding. And the baby expressed he wasn’t satisfied, slept hungry, and my wife very upset and feeling guilty.
Any advise is very welcome. We plan to beg the doc to allow feeding formula, maybe as a topup. And should we be concerned about the prolactin levels now?
Beth
This is very similar to my situation- discovered high prolactin, started cabergoline, conceived in a month, then a low supply (only diff, my baby took 3 months to learn to latch properly so I pumped for a while). I noticed that I have a low supply but it never made sense to anyone. I topped him off with formula so that he was full for probably 6 months until he started eating real food. It made a huge difference in his growth and irritability AND we still have had the breastfeeding experience too which I really wanted. Fed is best!! Right now he’s 18mo and weaning. Good luck, you guys can do it!
Nitin
Hi Beth, thanks for the reply. For some reason, I got notified of your msg only yesterday. We did exactly as you did. Baby is nearing 5 months now, gaining well, still a little underweight by the charts, but not by the looks. We are Ok. And the kid is happy too. 🙂
By the way, what did you do about the high prolactin? Our doc had suggested not to bother till she is breastfeeding, and that likely the levels will come down to normal by that time.
Gretchen
Wow! This sounds exactly like me!! Micro prolactinoma with a baby who was upset he wasn’t getting enough to eat and underweight. My doctor right away suggested supplementing. I’m only able to pump about 60 -70 ml a day. When did your wife stop pumping? Its now starting to feel like it’s not worth it.
Anne Eglash
Gretchen, have you met with a lactation consultant in your area?
Gretchen
I had met with one in the hospital, and twice with one during the first month of his birth. He’s now 3 months and drinking 700-800ml of formula a day and 60-90 ml of breast milk. I nurse him and he gets frustrated when he can’t get enough. Last nights pumping session became painful and barely got 20ml. I’ve tried so many things to get my milk supply higher and it just keeps getting lower and lower. Was this week beginning to wonder if my tumor could be to blame as I watch it get even less.
Anne Eglash
I am sorry to hear this. Without seeing you for a consult, I cannot diagnosis your low supply. However, there is an association between a history of a prolactinoma and low milk supply for some mothers.
Nitin
Pumping wasn’t really helping build more milk, and it created more stress because we could see that the supply wasn’t enough. We found a doc who’d recommend formula, and did not look back from there. We gave the baby about 30ml as top up, 2-3 times a day, post breast feeding, hoping that the supplies would gradually increase. He is 6 months old now, and we plan on switching from formula to food purees now.
TLew
Hello! I have a micro adnoma that has been controlled with cabergoline for about 10 years. We had issues with infertility but were able to get pregnant with assistance and after one miscarriage had a healthy baby boy. My endo had me stop taking the cabergoline when I got pregnant and started again after we were finished breastfeeding. Since then my prolactin has been higher than he would like so he has increased my dose twice. We are currently in the process of domestic adoption and will have a baby in about two months. I would like to try partial breastfeeding for attachment but my endo wants me to stay on my medication. I’m concerned this will make breastfeeding impossible. What do you think?
Anne Eglash
Hi, thanks for sharing your story. Cabergoline does drop the prolactin level, and you need an elevated prolactin to lactate. Therefore, I believe that taking cabergoline would prevent lactation, unless it is not fully suppressing your prolactin.
KZ
I had a child with problems breastfeeding (pain, cracks, candida and possibly tongue and lip tie of the baby that was not diagnosed).
I consumed a lot of fenugreek during the years after for the health benefits and with food for fun.
6 years after having our first child we could not get pregnant, and after a couple of months we discovered I had a large size prolatinoma.
The doctor asked me to take cabergoline for 2 months without trying to conceive (to check the prolactin level is back to “normal” and for an additional months so I can clearly understand when I get pregnant and then stop immediately taking the cabergoline.
That’s exactly, what I did and I got pregnant at the first try (after 2 months), at the age of 40.
Pregnancy and giving birth were without any complications.
Breastfeeding was painful and with candida and I stopped due to the pain again.
The baby had tongue and lip tie again- this time we diagnosed but decided not to breastfeed due to the pain and candida (took flucanozole but it took a long time to heal and stop feeling pain).
I pump 60-90 ml a day, and considering to stop completely so that the prolactinoma will not grow.
I wish there was research whether breastfeeding increases the size of prolactinoma so that I can make a decision whether I should breastfeed/ pump at all or avoid it not to put my vision at risk (or additional complications).
Also, Can you go through MRI scan while breastfeeding/ pumping, or should we first stop lactating?
I was also wondering whether my dietary consumption of fenugreek caused or increased the size of the prolactinoma.
Because there is no research I avoided any lactation drugs or herbs that are known to increase milk production, just in case they also cause enlargement of the tumor.
It is much more important for me to stay healthy than to breastfeed. My children need a healthy mother, and can do just fine with formula, or course, but I would have liked to know if there is research to make an informed decision.
Laura
I’m also intrigued. I have been exclusively breast feeding well with a good supply for 6 months now but suffering from the worst mood swings( sudden anger followed by a real low), headaches, aching body, dryness, foggy vision, weight gain, heartburn and hair loss. Not a great time, especially after a pregnancy that had me feeling the best I have felt in 10yrs. They are sending me for a MRI without the dye to check for growth. I guess it must be ok to have a MRI when breast feeding.
Lix
I’m 37 and just had my first baby five days ago. My prolactinoma was diagnosed when I was 19 but I’d always had irregular periods… and only discovered the issue once I lactated after every period at age 19.
Anyway. I took cabergoline off and in most of the last 20 years until conception and am have yet to produce milk. It’s very disappointing and I felt very unprepared for this potential reality. I think my endocrinologist may have told me but it just didn’t seem to stick – IDK i might be delusionally sleep deprived right now!
It’s been nice to read other women’s experiences in here. I feel less guilty and terribly about the situation.
Thanks
Rachel
Hi, I was diagnosed with pituitary adenoma (High prolactin) in December 2017. I had no symptoms, I went into the drs office for a health checkup and found out about it. I started taking cabergoline right away. In February 2019 my husband and I decided to try and get pregnant, and we did right away from the first try. (Never tried before that time, so not sure if I was infertile before cabergoline or not). So my question is, do women with prolactinoma have a large milk supply?
Angela
Hi there,
I have been on Cabergoline for about 4 years for pituitary tumor. We are trying to conceive and after the ovulation period I stopped taking cabergoline. I am ‘suspected’ 4wks pregnant and noticed I am lactating. I am so confused if this is an early indication of confirmed pregnancy or if it is a result of being off cabergoline for 2 weeks. Should I still be taking it up until confirmation of period after missed menstrual cycle?
Anne Eglash
Angela, I cannot give you direct medical advice. However, it does make sense that you are lactating now that you are off of cabergoline. Stopping cabergoline probably allowed your prolactin level to rise. I cannot tell you how long you should be taking it. I suggest talking to your physician about this
Amy
I had a prolactinoma that hemorrhaged removed 7 years ago and am left with about 10% of my pituitary gland. I produce enough hormones to menstruate and after mutilple IUI fertility treatments, ended up getting pregnant naturally. I just gave birth at 32 weeks 5 days and am 7 days postpartum. I pump every two hours but make only 1-2ml each pump, sometimes nothing. My prolactin level came back today at 40. Do you think I will be able to produce milk? What should I be advocating for my doctor to do next? It’s my OB as I don’t have an endocrinologist.
Anne Eglash
Amy, I suggest that you contact a local lactation consultant or breastfeeding medicine specialist for further guidance
Anne Eglash
Women with a prolactinoma can have a high or low supply. I suggest seeing a breastfeeding medicine specialist or a lactation consultant to review your history. In addition, after the infant is born it is very important to be followed closely by a breastfeeding medicine specialist or lactation consultant.
Sim Kaur
Hi I need some help and guidance please. I have had raised prolactin level of 5000+ on and off since age of 13. I have had 3 scans all indicating no tumours. One scan being just 6mnths before pregnancy. I managed to concieve naturally and have been trying to breastfeed my baby. Now 10 weeks old. Baby has struggled to put weight on but was producing right nappy output. Because of weight loss I have had to formula feed too alongside breast since week 2. My general practitioner doesn’t know what to do. I can only seem to express an ounce each side. Recent blood test showed a level of 9000. Any guidance would be appreciated.
Georgette Bartell
There are 3 kinds of prolactin and only one is effective with milk supply. When blood prolactin is checked, all 3 are checked. Thomas Hale, R. PH., Ph.D. and Teresa Baker, M.D. started research on this in 2015 at the Infant Risk Center. Maybe they know something about this.
Ahmed
macroadenoma case with high level of prolactin take cabergoline before and during pregnancy to control the level of prolactin. Now she is breastfeeding and continuously taking cabergoline as a control dose for macroadenoma, is any contraindication or problems for the baby from excreation of cabergoline in milk ??
Anne Eglash
She will likely stop lactating soon if she is taking cabergoline during lactation. We have no information on safety of cabergoline for infants.
Sim Kaur
Hi, thanks for the response. I have been assured by endocrine specialist that there are no tumours from scans. I have had 3 scans through my lifetime since the age of 13. Now 31yrs old. Is it possible to have tumours that aren’t appearing on scans? What I really want is to be able to meet supply needs of my baby and be able to breastfeed him.
Rashi
As per my Doctors advice i took cabgolin 0.25 twice to reduce milk supply as i had risk of mastitis. But now my milk production has reduced so much that it is not enough for my 56 day old baby. I am taking Lactonic now to increase milk supply but it is not helping. Please advise if there is any medicine that can help in production of milk supply.
Anne Eglash
I am sorry to hear that this has happened. Given that you have a history of high supply, I would expect that you can re-establish your supply over time, perhaps over a few weeks, with continued nursing and pumping when the infant is not able to nurse. I suggest that you find a local lactation consultant who can work with you on this.
Rashika
Thank you Anne for replying. It helped me to stay positive and keep on trying. Though i suffered for a month but after that i was able to breast feed her completely.
Anne Eglash
Thanks for the update. I am sorry to hear that this happened, and congrats on working hard to regain your supply!
Bharath Kumar Bachina
Hi,
My wife got Mastisis and doctor did operation to remove the pus inside for two breasts . To reduce the milk supply she took Cabergoline 0.25 4 times.
Now she is getting better. But she can only express hardly 20 ml in a day
Can any one pls suggest how to increase the supply
Thanks
Kezjay
Is it possible to take any fertility medication with a prolactinoma and still breastfeeding? I’m not ready to wean my son, but ready to have another baby. I’ve had one random period, but no true ‘cycle’. I hate the lack of information out there amongst medical professionals!
Anne Eglash
You would need to talk to your fertility specialist about this. They often ask mothers to wean, since breastfeeding raises the prolactin level, and this can inhibit ovulation
Anne Eglash
I am sorry to hear that this happened. She needs to nurse and pump as often as possible, such as every 2-3 hours around the clock, to bring her supply back up. It may take 2-6 weeks to get back to her previous supply
Julia
Hello
I had taken Cabergoline (1mg) to reduce my oversupply. I was misled. My milk supply dropped drastically and now i have very few drops with a hungry 3 month old. I dont want to formula feed since i cant afford it.
Is there a way to reverse the effects of cabergoline and get my milk supply back? Its stated above that women on cabergoline have successfully breastfed. Any advice is appreciated
Thank you
Anne Eglash
I am sorry to hear that this happened. Yes, you can get your supply back by pumping/nursing as often as possible. It can take 4-8 weeks to get back to baseline. Ask your physician for a prescription for metoclopramide, if you don’t have any contraindications to taking it. This would help to bring your prolactin level back up. If you live outside the USA, you can ask your physician for domperidone. You do need to feed your infant, of course, so you might have to give formula if you don’t have extra breastmilk.
Juliet
Thank you so much for your response. Will see my physician tomorrow for a dom prescription
Mariah
Hi, I’m currently 1 month postpartum and only breast fed for the first 3 day’s up until my sons first doctors appointment where they told me he lost too much weight and to give him formula. I decided to exclusively formula feed for a while because my nipples hurt so bad and since he lost too much weight I figured I didn’t produce enough.. I’m currently trying to get my breasts to produce more milk so I can breast feed since he learned how to latch better and it is painless but I’m barely producing anything at all. I have a .9mm prolactinoma and was treated with cabergoline for 2 years prior to conceiving. I stopped taking medication the day I found out I was pregnant.
HK
Hi, I was diagnosed with high prolactin (level was 42) about 6 months after fully weaning my first child at 18mo pp. (Started normal menstruating at 13 mo pp but then periods got short and spotty around 22 mo pp). No tumor on MRI. Took cabergoline for 6 weeks, got pregnant. Now one month after weaning at 15mo pp, checked prolactin, its at 52. I still have not had a period and show signs of low estrogen.
I was wondering: Is it normal for levels to be that high one month post weaning? Should i ride it out a few months before taking anything to lower it? Have you seen any women whose prolactin level naturally went down on its own? Can vitex “kickstart” normal menstruation?
I had a weird minor side effect on cabergoline so Im not loving the idea of going back on. BUT I am extremely irritable, angry, anxious just like last time, and after taking cab last time my mood improved tremendously in just a week.
Have you seen women who took it a couple months and then were able to get off it and prolactin stayed normal?
I guess Im confused why I have elevated prolactin again if I didnt have a tumor last time 2 years ago. (I plan to ask for another MRI to rule out tumor before restarting cab or trying vitex). Are there any theories out there about unexplained hyperprolactinemia? I have a hard time accepting that there is just no reason for this?
Is low dopamine the cause? Are there natural ways to increase dopamine? Is there any link between patients with high prolactin going on to get parkinsons later in life. Sorry, I have sooo many questions. Feeling confused, worried, and frustrated. Thank you for answering my questions.
Anne Eglash
Hi, I am sorry to hear about your stress regarding your prolactin level. We cannot give personal medical advice thru this website. I strongly recommend meeting with your primary care physician or your endocrinologist about this issue. Best wishes.
Rashika
Thank you Anne for replying. It helped me to be positive and keep on trying to produce enough breast milk. Now my baby is 7 months old and i was able to produce enough breast milk for her though i suffered for a month where i had to also feed her formula milk.
Sam
Hello, what did you do to increase your milk supply?
Yiska
Hi,
I was started as a teen on Cabergoline for microprolactinoma, and was on it for many years. Eventually had surgical removal of the prolactinoma, and got pregnant shortly thereafter. When baby was born, I tried breastfeeding, but pediatrician told me on day 4 to supplement with formula because my milk hadn’t come in yet. I tried pumping regularly over the next few days but barely got anything. After a week I gave up and baby was on formula only.
A lactation consultant told me a couple months later that she believed I could have breastfeed successfully, and could do so the next time. Now I’m pregnant again, mid 1st trimester, and I’m not feeling any breast changes / pain, which I did feel at this point during the first pregnancy. Is that a cause for concern? Is there anything I can do differently to be able to breastfeed successfully this time?
Meredith J
This has been so helpful. I had a macroprolactinoma at age 19, did not shrink with Dostinex, had Gamma Knife radiation at 22, and no regrowth since. I stopped taking Dostinex before trying to conceive my first child in 2017. Milk production was very low and had to supplement from the beginning. I have been off all meds since 2017 and I am due with #2 in 2 weeks. I’m very interested to see how milk production will go this time. There is so little info for people that had pituitary tumors in the past. I will be working with a lactation consultant more closely this time so I hope my production is much higher this time!
Brittany
Did you notice a difference this time in milk production?
Brittany
4 weeks PP tomorrow and I have been exclusively pumping every few hours due to the fact that my supply was low and my daughter was getting very frustrated at the breast. I am officially giving up as I can only pump 0.5oz per day! Prior to pregnancy I had an 8mm Prolactinoma which was diagnosed Oct 2019. I started Cabergoline shortly after this and stopped March 2021 when I found out I was pregnant. I never lactated as a symptom prior to diagnosis either. I do have Breast implants, under the muscle which I was told wouldnt be a problem for Breastfeeding later on, however i dont believe this is true. Not sure if its my tumor, the medication, or my implants that caused the low milk supply. Thanks for the article!
IABLE
I am so sorry to hear this. It would be so helpful to have your prolactin level checked about 15 minutes after milk expression to see if your PRL is elevated. It should rise briskly right after pumping. There are other causes of such low production, such as early hormonal birth control, other medications such as aripiprazole, a retained placenta, and other pituitary problems. I suggest talking to your physician to rule out all other problems.
Jc
I’m glad this comment thread exists. I had microadenoma prolactinoma for 10 yrs and was on cabergoline. I stopped when I became pregnant at 40. Had good pregnancy and ended with a c-section. It took 11 days for my breast milk to come in. I was supplementing with formula the first few days to make sure the little dude was getting enough. They were long 11 days of pumping every 3-4 hrs throughout the night. I’d get so excited over a couple mls if colestrum. When it finally came in it hasn’t stopped since. It’s been 3 yrs and I’m having trouble weaning. I think it’s the finality of it all that is hard. It took so long to get comfortable with breastfeeding and now to end it, I just need to take. My medicine and it will dry up like that. I guess that would make weaning easier. But it’s hard to make that decision and have it stop so suddenly! Hang in there moms trying to get their breast milk in. But also if it doesn’t work out, you’ll still be an amazing mom to your baby!
Lisa M
Very interesting thread- there must be hundreds more stories out there! I have looked into this myself and found an old case study where there were three different treatments. What made this case study really interesting is that they tracked prolactin levels from treatment, through pregnancy, and into lactation, as well as estradiol (which drives prolactin during pregnancy) and lactation outcome. I have come to the conclusion that anyone with this history should having prolactin monitored during pregnancy and into lactation. We know what it should do, and if it doesn’t rise normally, we’ll know that a problem for lactation is imminent. So much better than waiting blindly to see what happens! Batrinos, M. L., Panitsa-Faflia, C., Anapliotou, M., & Pitoulis, S. (1981). Prolactin and placental hormone levels during pregnancy in prolactinomas. Int J Fertil, 26(2), 77-85.
AJ
Dx with Hyperprolactinemia and microadenoma 10/2012 at 15yo. Finally got checked after never having a period but could stimulate milk out of both breasts. Levels were in the 200’s. Started Cabergoline, levels stayed in normal range during this time. Got pregnant 2/16, at 15 weeks, prolactin was over 300. At 36 weeks Prolactin was over 500. Noticed visual changes, MRI done, tumor had increased from 8mm to 15mm. I took Cabergoline throughout pregnancy but not like I was supposed to. My milk did indeed drop, had a LOT of leakage & pain, but due to tumor size and other bothersome indications I never pumped or latched. 2 years PP, tumor had shrunk to 3-4mm in size, no milk expressed. As of 3/22 I am pregnant again. I did not religiously take Cabergoline the last 2 years. Maybe .5mg 2x monthly, no milk expressed, and levels stayed on the upper side of normal range(19-23) the whole time. It only took 2 months to get pregnant and I completely stopped Cabergoline when I found out. Around 8 weeks, my prolactin was in the 80s. I started with breast size between a B & C. Around 17 weeks I am in a D size and my breasts feel full and heavy. I am expressing milk if stimulated. Is there a good chance I will have sufficient milk supply?
IABLE
Hi, it sounds like you have a good chance of making sufficient milk, based on your prolactin level in pregnancy and breast growth. Please make sure your physician follows infant weights closely in the first month at least, and I suggest establishing care with a lactation consultant or breastfeeding medicine specialist to follow you as well.
Good luck and congrats!
AJ
Update: I have been able to successfully breastfeed going on 3+ months. Once my milk dropped, I had no supply issues. I’ve been an over-supplier actually. My daughter is gaining well weighing over 14 pounds at 3 months!
Kristen R
Hello!
Wanted to share my story. Had a missing period for 4 years in my 20’s. Eventually, a doctor checked my prolactin, and then we did an MRI to determine I had a 5mm tumor. After I got on meds, my period regulated, and all was good.
I met my partner in October 2020, and we decided to try for a baby shortly after since it was something we both desired. I conceived a few cycles after we started to try. I had a pretty high-risk pregnancy (SCH, short cervix, placenta previa, and hemorrhaging.) Anyhoo, the baby came by C-section, and I had no issues with milk supply. I made about 30oz a day, and my baby would eat 24-26oz a day, so I was able to build a nice stock pile in my freezer.
I finished breastfeeding this past October, after breastfeeding for 9 months. I thought lets check and see what my tumor is doing, and the MRI revealed my tumor had completely disappeared.
Has anyone experienced a disappearing tumor after having a baby, and had it return?? I’m wondering if i should’ve waited 6 months between ending breastfeeding and getting the MRI. Also, something to note about my tumor is that it GREW on cabergoline. Usually, cabergoline keeps these things the same size or shrinks them.
2017-4-5mm
2019- 7-8mm
2022 – gone???
Mikayla
I know this is a long shot but when I was diagnosed I was only on cabergoline for a short period of time not a long period of time like others are suggesting but does anyone know if it could cause increased risk of hormones in actual breast milk meaning baby gets more of a certain hormone. My 7 month old is dealing with infantile acne and I’m wondering if it’s my fault all other reasons have been ruled out
Michelle
i was diagnosed w a prolactinoma when having problems getting pregnant. i was only on cabgergoline a short time before becoming pregnant. i was then on it again toll getting pregnant w my second for about a year. both times i have little milk production. (more on my 2nd) but usually only get 1.5- 2 ounches per breast a pump. wish i read these stories sooner, as i really killed myself trying to increase supply. i did substitute w formula
Hannah Bell
I’d like to add my story here. I was diagnosed with a <3mm prolactinoma in 2002 when I was 22 years old. I did not take any meds for it and had irregular periods for years. Married in 2006 but I was infertile and never got pregnant with my husband for the first 9 years. (I desperately wanted children but he never felt ready.) When *he* was finally ready to start a family, my Endo prescribed me Cabergoline in Nov 2014 and to my surprise, we got pregnant just 4 months later. Stopped Cabergoline as soon as I found out I was pregnant. Had my first child at 36 years old in 2015. To say I had an oversupply of milk is an understatement! I could feed an army. I fed my baby and donated milk to other babies too.
After an MRI showed my prolactinoma had doubled in size during my pregnancy/breastfeeding period, I started Cabergoline again in 2018 after weaning my son.
Fast fwd 3 years, a divorce, and broken dreams, I still wanted the family my heart always desired. I met a man, fell in love, and we got pregnant relatively quickly (while I was still on cabergoline). Stopped Cab as soon as I got pregnant. Had my second son in Oct 2021 at 42 years old and had the same oversupply issue. Fed my son and donated milk again the second time.
Now in 2023, my baby is 20 months old and I’m ready to get back on Cabergoline for one last shot at getting pregnant before I’m “too old”. He’s still breastfeeding but I feel like this is my last shot because I’ll be 44 in August, and I don’t want to have a baby past 45.
So the plan is to wean my son by getting back on Cab, to dry up my milk and *crossing fingers* become fertile one last time.
Cabergoline has been a life saver for me, gave me fertility, and has been my miracle drug for having the family I always dreamed of. I don’t really have any side effects while on it. It did not affect my milk supply at all, and according to my most recent MRI 3 months ago, they couldn’t find any sign of my tumor?! Oddly enough, my period has also been on time like clockwork, even without the medicine after my second was born, even while breastfeeding. Crazy.
Here’s to hoping I have one last chance at having a girl before my body closes up shop for good! Wish me luck. ☺️
Kelly
Hello, thank you for all the great advice on this page. My baby is 15 weeks old, I was on Cabergoline for 2 years pre pregnancy and remained on a low dose during pregnancy. Once I had given birth I was advised to stop the medication to breast feed. After 4 days of calling the feeding team and the midwives to be told all is fine and continue solely breast feeding, my baby lost 22% body weight and ended up in HDU with dehydration. Thankfully he is now very healthy and I am combi feeding however my breast milk supply is still very low so he is fully formula fed and then topped up with breast milk after pumping and breast feeding morning and night after his bottle. I am keen to increase my milk supply now that I am off the Cabergoline but I worry that domperidone will affect my pituitary prolactinoma. My last MRI post partum showed a significant reduction in size so they are happy for me to stay off the Cabergoline. I am seeing a nutritionist, taking lactation supplements, power pumping, making sure i am hydrated. Is there anything else you may be able to advise? Many thanks, Kelly x