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Abnormal lactation from hypothyroid?

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Posted 9/11/2012 8:28 PM (GMT 0)
Hi folks,

I am 29 years old, have never been pregnant and have been lactating for 3 almost years (small amount of milk, mostly when breast is squeezed). I don't have health insurance and so I'm limited in what I can do, but I'd like to get a diagnosis so I can try to heal myself.

A proloactinoma/pituitary tumor has been ruled out. My prolactin levels are normal and I also had an MRI that showed I am tumor-free. My doctor said I'd need to go to an endo if I wanted to pursue it further. I decided against it because 1). I didn't have money to spend and hadn't gotten anywhere with the $ I had shelled out and 2). By the time I got the MRI I wasn't feeling that bad other than knowing my hormones were obviously messed up.

Here's some background:

I was extremely stressed for about 2 years before I started lactating and I honestly think this is what caused it. about a month before the lactation started I felt totally out of control and couldn't handle stress. My sex drive plummeted (and has yet to return). The only way I could motivate myself to work (and I was super busy at the time, so this is what I did daily), was get myself stressed about the task at hand so I'd somehow have the energy to complete it. I've always had cold hands and feet and that continues. I do sleep well now, but had some issues sleeping around that time and I also would grind my teeth. Things have improved since then, but I'm not 100%. I'm wondering if the lactation is caused by hypothyroidism, adrenal fatigue or both.

I eat pretty well, don't drink much coffee or eat a lot of sugar - lots of good fats, whole grains and veggies.

For now my symptoms are basically lactating, no sex drive, not good at handling stress, not super energetic (but generally OK), cold when it's below 75 if I'm not moving. My pulse is 60 and my temps are a bit low, but I haven't tested them consistently (they seem to be around 98.4 during the day). My hair is dry too.

Knowing that my finances are limited, what would the best steps be?

Thanks so much,

Ta

Posted 9/12/2012 1:13 AM (GMT 0)
If you google "hypothyroid galactorhea" you'll get several links. Most of them are fairly technical medical terms, however the gist is that hypothyroidism and elevated TSH can definitely cause an increase in prolactin, which causes lactation.

Even though you don't have insurance, a visit with your doctor may be helpful. Blood tests can diagnose thyroid problems, and medication for hypothyroidism is inexpensive. I don't know what the potential long-term consequences of constant lactation may be.

Good luck to you.
Posted 9/12/2012 3:06 PM (GMT 0)
Thanks for your reply, Judy. I do want to get some bloodwork done to see if it gives me some clues.

The odd thing is that my doctor tested my prolactin twice and it was normal (does anything else cause lactation?). I believe he looked at my TSH and either T3 or T4 as well and that was normal, so it seems I'm just a freak of nature!

What bloodwork would people recommend? I was thinking about the panel below, which looks pretty comprehensive:

http://www.canaryclub.org/hormone-testing-combined-tkm/productmenu-her-advanced-plus-hormone-profile-zrt.html#

Thanks for your input!
Posted 7/13/2013 11:54 PM (GMT 0)
Hello Ta! I saw your post and had to respond. Hopefully, you have already gotten this straightened out, but in case you haven't, I had the same problem too!

What I found is that I had an iodine deficiency that was causing subclinical hypothyroidism. Because it was subclinical, my thyroid levels would sometimes test low and sometimes test normal. What I found out is that galactorrhea (lactation in the non-pregnant) doesn't necessarily mean that prolactin levels are high. I learned that if thyroid hormones T3 and T4 are low, that lactation can be stimulated. I learned something else too - that the breast is a storage facility for iodine and if your iodine levels get low, any number of breast problems can result including inappropriate lactation and even fibrocystic breast disease. Anyway, I went and got an iodine supplement - NOT iodized salt, but Iosol Iodine (not very expensive, I think it was $12 for 620 doses) and started with one drop in a bottle of water that I drank from all day. After a week, I started to feel a little better and chose to increase my dosage by one drop - so I was now taking two drops a day in a bottle of water and I continued to improve. When I had increased my dosage to 4 drops a day I started to feel a little anxious and jumpy, so I dropped my dosage back down to two drops per day and the anxious jumpy feelings went away. I continued this for about three weeks feeling better and better every day. Not only did the lactation eventually stop completely (after about a month), but my breasts stopped being painful during my period after about 3 months. Ever since I have taken a low dose of iodine (one drop) every day in a bottle of water and have never had another problem - it has been 15 years.

Hope this helps!
Posted 5/25/2015 2:15 PM (GMT 0)
Dear Ta and Equidae7 -
Thank you for your posts!!!!!! I too have been lactating for about three years. I also have a slew of hypothyroid symptoms: extreme fatigue, hair loss, weight gain, excessive menstration, headaches, etc. I've tested below normal range on T3 and just at the edge of low on T4. MRI has ruled out pituitary tumor and prolactin is normal. My doctors keep telling me that there's nothing physically wrong with me and that I have mental problems. It's very frustrating. They laughed at me about my hair falling out and said that I was "overly concerned about my appearance". They said the lactation was the result of "sexual excitement" - despite the fact that I haven't been sexually excited in years now because my drive is also gone…….I'm at wits end and don't know what to do. What type of doctor did you see Equidae7? I can't find anyone who thinks treating low T3 and T4 is worthwhile and I'm tired of being called crazy…..
Thanks Much
Lix
Posted 5/25/2015 2:43 PM (GMT 0)
Do you have any TSH tests to share with us ?

You need to see an Endocrinologist .
Posted 3/19/2016 7:27 AM (GMT 0)
I'm 34 and I've not yet been pregnant (we're getting ready to try this year!) I just want to let you know I've been lactating since I was 16 years old. It used to kind of freak me out. It's concerning to be different. And it can be a little embarrassing. I've had partners get an accidental squirt from squeezing my breasts. I got my prolactin levels tested and the results came back normal. I eventually came to accept that not everything that's abnormal is a sign of something "wrong". Science can only account for what it can quantify and fit into known schematics. There are links and theories but no evidence that something is wrong. I have a theory, not based in science, just my intuition. Up until recent generations lots of women died during childbirth. It's logical that some of us would evolved to create milk to keep our tribes alive. I'm not saying I produce enough to fill a bottle, and I've never tried to feed anyone's baby, but I know that more milk comes when my nipples are stimulated. If l ever needed to feed someone's baby I imagine the stimulation could produce more milk to keep the lil one alive. My stance on the issue is to relax. Stress causes illness. If iodine helps with stress and stops the milk, wonderful. If not, please don't stress. You're definitely not a "freak of nature."

Post Edited (yasa) : 3/19/2016 1:34:58 AM (GMT-6)

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