Sheehan's Syndrome-very little breastmilk - Mothering Forums

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#1 of 12 Old 11-02-2011, 07:01 PM - Thread Starter
 
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  I was diagnosed as having Sheehan's Syndrome, diagnosed by MRI in September. The damage to my pituitary gland was caused by blood loss during a c-section in September. I've been supplementing with formula since baby was born, he was 10 lbs 10 oz and had low blood sugar at birth.

   I've been taking domperidone, fenugreek and blessed thistle (not as frequent and as many as the bottle says). After I first started back on the fenugreek I got 20 ml when I pumped one side. I know this isn't an accurate measurement of what baby gets when nursing, but it helps me to gauge if my supply is decreasing or increasing. Then last week I only got 8 ml on one side.

  I will be seeing an endocrinologist tomorrow to get my test results for my thyroid and prolactin levels (not sure if the dom will affect it??). I had read somewhere that if I have thyroid issues, herbs won't help to increase milk supply. Does anyone know if there is any truth to that? Any other ideas on what I can do to help increase my supply? I've ordered More Milk Plus, hoping that the tincture will work better than capsules.

 

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#2 of 12 Old 11-03-2011, 08:56 PM
 
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I'm sorry you are dealing with low supply.  I know how exhausting and heartbreaking it can be.  hug2.gif  I don't have experience with Sheehan's Syndrome, but I do question my pituitary health and the function of my hypothalamic-pituitary-adrenal axis, based on the fact that I've had unexplained low supply with both of my daughters, which I believe has a hormonal cause.  In my research, I came across this website, which suggests vitamins and herbs to support pituitary health.  I thought I would share it with you, in case you find it helpful:  http://www.carolynchambersclark.com/id148.html

I hope you find some answers and remedies from your endocrinologist as well.

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#3 of 12 Old 11-04-2011, 06:04 AM
 
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I'm so sorry you're going through this.
From what I've read, the problem is that the many galactagogues (like dom) work by stimulating your pituitary to make more prolactin but if the pituitary has been severely damaged by the blood loss, as in Sheehan's Syndrome, it may not be able to do that.
But before concluding the dom isn't working, are you taking enough? The standard starting dose is 90 mg a day and some women take up to 160 mg a day.
As I said, all I know is what I've read - in the book The Breastfeeding Mother's Guide to Making More Milk - but it does say that Dr. Mona Gabbay in NY has had suuccess treating moms with domperidone after postpartum hemorrhage.
In the meantime, I had to supplement about that much with my first son and ended up using a Lact-Aid at-the-breast supplementer. It's a really handy product and it made me feel good that my baby was fed entirely at the breast.
GL

Megan, loving her sweet rainbow1284.gif boys, born Aug. 2008 and Feb. 2011, and their sister, born still March 2007 candle.gif
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#4 of 12 Old 11-04-2011, 09:52 AM
 
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I don't know anything about Sheehan's Syndrome but I do have unexplained low supply.  The domperidone works by raising prolactin levels so if your body is responding to it, then it WILL affect your prolactin levels.  Also, my lactation consultant told me that drawing blood for prolactin levels HAS to be timed.  It has to be done before and after a feeding (maybe 20 minutes after?  I can't remember) and then you have to look at the difference.  My primary care physician wasn't really keen on getting my prolactin levels drawn because I was already on domperidone and if my levels were low, they would....put me on domperidone, which I was already on!  And if they were low ON the domperidone, then there was nothing they could really do about it.  My LC said that there is just not a lot of research in this area and all we really know about low supply is to try and increase prolactin and to remove milk frequently.  I did get my thyroid levels checked because I have Hashimoto's but it was always normal.


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4 years and 5 IVF cycles in the making, Elliott was born at home in water on 2/2/11.
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#5 of 12 Old 11-07-2011, 04:47 PM
 
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Unfortunately I think Megan73 is right - if your pituitary is nonfunctional then the domperidone and fenugreek won't help much, because they work by stimulating your pituitary to produce prolactin.  I'm not sure how the blessed thistle works. 

 

I'd wait for the results from the testing to be sure, but if your prolactin remains low even on high doses of dom and fenugreek I'd guess they are not likely to be helpful.

 

You could consider asking your endocrinologist about exogenous prolactin - as far as I know it is experimental only but there have been some encouraging preliminary results published.

 

http://www.ncbi.nlm.nih.gov/pubmed/20718766

 

http://www.ncbi.nlm.nih.gov/pubmed/21262884


Me, DH, DD1 (5/2009) and DD2 (10/2011).
I'm not crunchy. I'm evidence-based.

Vaccines save lives.

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#6 of 12 Old 01-25-2012, 03:29 PM
 
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I know that I am barging in here unannounced... forgive me please, and I am rather late as I just found this thread. Whenever I hear Sheehan's Syndrome, my ears perk up like a little doberman... I too have it. Just to answer questions about natural supplements for help with breastfeeding, with pituitary damage the "master gland" is damaged, so therefore any of the hormones (or stimulating hormones) that come from the pituitary cannot be stimulated to work properly...prolactin being one of them. Sheehan's is a dificult condition to diagnose and treat... hope you get in to see your Endocrinologist soon, as it can be fatal if not treated properly. God bless you, and hope you get help soon.

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#7 of 12 Old 01-29-2012, 08:45 AM
 
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see a homeopath...and soon! 


Consciously mothering 3 girls and 2 boys
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#8 of 12 Old 02-02-2012, 09:06 AM
 
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Do you know if women with Sheehan's still go through the engorgement phase?  My sister lost a lot of blood, got engorged, but 2 days later her milk suddenly dropped drastically.  She's taking various herbs, pumping, and even a beer at night and her milk came back.  Last night she didn't have a beer and this morning she notices low milk again.  I'm wondering if this is a possibility for her and if she should go get some blood tests (and check thyroid too?)?

 

Quote:
Originally Posted by drey View Post

I know that I am barging in here unannounced... forgive me please, and I am rather late as I just found this thread. Whenever I hear Sheehan's Syndrome, my ears perk up like a little doberman... I too have it. Just to answer questions about natural supplements for help with breastfeeding, with pituitary damage the "master gland" is damaged, so therefore any of the hormones (or stimulating hormones) that come from the pituitary cannot be stimulated to work properly...prolactin being one of them. Sheehan's is a dificult condition to diagnose and treat... hope you get in to see your Endocrinologist soon, as it can be fatal if not treated properly. God bless you, and hope you get help soon.



 

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#9 of 12 Old 02-16-2012, 01:41 PM
 
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Yep, I just got back from traveling to see a big-wig endocrinologist and he thinks I have sheehans.  I had an episode after my last delivery that despite no large amounts of blood loss (it can be caused by a drop in volume OR pressure) that sounds VERY much like the pituitary stroke of Sheehan's disease.  I was able to breastfeed my son after the birth (no body paid any attention to my episode and just let me "sleep it off" despite the alarming nature of it all) but it was never quite right.  He was jaundiced at about 3 wks postpartum and he had not regained his birth weight so I was required to supplement for a while.  The mechanics of breastfeeding were fine, but even after the supplementing there was still something wrong and we weaned him at 6months.  Of course, I had no idea till Tuesday that Sheehan's was even a possibility.  My endocrinologist won't test prolactin while breastfeeding because it isn't definitive for diagnosis...I've got orders for all kinds of hormone labs postpartum including an MRI.  I'm pregnant again (34 wks) so most of them would be inconclusive in pregnancy and the MRI is obviously out, but because I've been so sick from the hypothryoid and hypo-pituitarism and we have the healthy alternative of "Nourishing Tradition's" raw goatmilk-based formula, we aren't planning to try more than a few days of colostrum. 

 

For those wondering about this, Sheehans is actually very rare and chances are that you'll have a hard time getting a doctor to listen to your concerns about it, let alone one that knows what it is or how to diagnose or treat it.  My OB's didn't even clue in on the hypothyroid, they surely wouldn't have figured out that it was being caused by my pituitary not functioning correctly.

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#10 of 12 Old 02-16-2012, 04:51 PM
 
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Well, just to update on my sister, she got results back this week.  Estrogen and prolactin were very low, as well as Vit D, even though she's taken the same amount this whole time and tested fine a year ago.  Before the results even came back though, she started maca root and her milk has come back back great.  I can't remember which is which, hypo or hyper thyroid, but she had the one before and during her pregnancy where you're crazy starving all the time.

 

So check out maca root for endocrine issues, it's working well for her so far.  Thanks to all for posting this thread and bringing awareness!  If I hadn't found it in google, my sister's breast-feeding relationship might have sadly come to an end!

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#11 of 12 Old 02-20-2012, 10:19 AM
 
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Sounds like hyperthyroid...and doesn't sound too much like Sheehan's.  Is that something she has or were you just looking for answers?  Don't forget Sheehan's isn't a typical under-productive gland issue, so the typical OTC solutions aren't likely to work.  I'm glad she was able to find something that helps her!

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#12 of 12 Old 02-08-2014, 11:38 PM - Thread Starter
 
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Update: when I saw the endocrinologist she said the MRI was inconclusive, but one of the doctors had told me that there was some shadowing on the pituitary. I later learned that it was too early to see results of necrosis.
I continued to nurse my baby boy every 1.5-3 hrs, followed by a bottle of formula and for a short while he had a little bit of donor milk from his aunt. He nursed until 13-14 months, not sure of exact day. It was a tough half year, going through PPD, low-supply, and health issues. I've been on Synthroid for hypothyroidism since November 2011.
This past November I had another MRI which showed that there was necrosis of the pituitary gland. I also did some more testing, and my adrenal gland doesn't respond much when stressed, so now the endo wants me to take dexamethasone (sp?). My menstrual cycle didn't return, so now I'm no longer able to have children without assistance. greensad.gif
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