Colitis & hair loss

Okay, so this might be a long post because I need to explain a lot. I’ve had ulcerative colitis since I was about 7 years old, I am now 27. I was on 6MP (mercaptopurine) from the time I was 14, until 24 so 10 years. Since I was about 21, I noticed that my hair was extremely thin. I’m not sure exactly when it started, but that was when I first started noticing it, & looking back at pictures the last time my hair looked thick & full I was 16. Now, I also used to bleach my hair and not take the greatest care of it, but I chopped off all the damaged hair & for the past 3 years, I haven’t colored it at all, I take vitamins, eat very healthy, drink a lot of water, deep condition, use oils & take very good care of my hair. I also no longer take any colitis medication except occasionally for a few months at a time if I don’t feel well, & nothing I take has any hair loss side effects. In 3 years, my hair has only grown from collarbone length, to bra strap length, or at least that’s all the length I’ve been able to maintain. It is extremely thin & fragile & the small amount of hair I do have breaks off even thought I’m extremely careful with it. I’ve been tested for thyroid problems, as well as hormone imbalances & been to a dermatologist - all say there’s nothing wrong with me. I’m in cosmotology school to be a hairdresser, & I’m at the point where I cry about my hair almost daily. I have 1/4 of the hair I used to have & it just won’t grow & all I want is waist length hair with my original thickness back. I feel like I’ve run out of options so I’m wondering 2 things - if the 6MP could possibly have damaged my hair follicles so much to the point that it just won’t go back to normal, even though I haven’t taken the medication in almost 4 years now, or if the colitis itself could be the cause of my extremely thin hair. I was hoping someone here might have some insight...

As UC patients we're much more prone to have thinning hair or hair loss with or without medications. We're more prone to having anemia (a low blood iron concentration), low levels of essential vitamins like D, B, B-12, and any one of those things can cause thinning hair or hair loss. Some of us are genetically susceptible (have a genetic mutation that can promote being less able to absorb certain nutrients from our food) to having lower levels of B-12 (folate), more common with UC patients but not guaranteed by any means.

I'd get a blood test to check your blood iron levels and see if you have any signs of anemia. If you do, then adding extra iron to your system either through food or supplement pills can help reverse it.

I'd get a blood test to check if you're low in any of the aforementioned vitamins. If you are then eating foods rich in those vitamins or supplement pills can help reverse it.

How are your UC symptoms currently: any blood on tp, any urgency, how many times a day are you pooping? If your UC is flaring even mildly then that can also explain hair loss. In that eventuality, you'd need to take some medications to treat your UC on an ongoing, maintenance basis as is recommended for us.

"Wondering if the 6MP could possibly have damaged my hair follicles so much to the point that it just won’t go back to normal, even though I haven’t taken the medication in almost 4 years now?" No.

"Wondering if the colitis itself could be the cause of my extremely thin hair?" Yes if you're flaring or have recently flared, have anemia, or low vitamin levels. Otherwise no.

I have had my vitamin levels checked & they all came out normal & I also take a multi vitamin as well as extra vitamin D & biotin. Not sure about iron though, I’ll look into that because I don’t eat red meat so it is possible that I could be low in iron.

As far as symptoms, for the most part I never have any. There’s occasional times when I get super stressed that I’ll have mild symptoms for a month or two but they generally go away on their own or with temporary medicine & it doesn’t happen very often at all. Like, I’m talking years in between any problems. My hair has been consistently thin for at least 6 years now though. And during most of that time I had no UC symptoms at all. I only recently had mild ones becuase of a very bad, very stressful breakup I went through.

Considering this has been a problem lasting for years, I don’t really think stress could be the cause. I mean, I’m always somewhat stressed out, because eveyday life struggles, but I’ve looked that up as well & from what I’ve gathered normal every day stress won’t cause significant hair fall.

Also, my hair isn’t really falling out anymore. Initially it did, but I don’t really shed that much since I stopped dying my hair & yet it’s still very thin. It mostly just breaks off, but I know the breakage isn’t the sole problem, because it’s very thin even at the top. The only part that feels fuller is mid-way down my head to the nape of my neck.

If you have a blood test in your history that's either "Hemogram with Differential" or "Complete Blood Cell Count" then you've got blood sufficient results to determine if you're anemic or not. They're common blood tests run for us, so you might have one in your history.

Anemia is somewhat common with us, and can certainly cause hair loss. Anemia can last years with or without UC symptoms, so it is a plausible theory that blood tests will confirm, or disprove.

Not sure how restrictive your diet is, certainly some of us have very limiting diets to keep our UC happy, but we have to be careful to ensure we're getting all of the essential nutrients our body needs to be healthy. As it can cause deficiencies that result in hair loss.

Hair is one of those things that's the first to go when we're unhealthy due to low iron, vitamin, extreme-and-prolonged-stress, malnutrition, and injury. Even though it's distressing to us personally, it's better than an organ or something else stop working. Hair can regrow once the underlying problem is resolved, other things not so much! And that's really the goal, find and resolve the underlying problem and your hair should regrow over time to it's former thick and healthy self.

It's true that hair loss is a delayed-reaction, as is also the case with hair regrowth. Usually about a couple months after the issue.

Hi Aurora, a couple of things. My daughter saw her doc recently due to the fact that her hair and nails were not growing..he immediately pinpointed that she doesn't eat red meat and her diet wasn't great and he suggested she was low on iron.

Also, I recently lost a lot of hair, not sure what caused it but I bought biotin,folic acid, and vitamin B12 and after a month of taking these my hair has stopped falling out..so maybe try iron tablets and anything else mentioned here.