Crohn’s disease treatment and hair loss

Posted by sandyjr @sandyjr, Nov 17, 2019

My daughter had a Crohn’s attack starting last fall and culminating in surgery this past August (2019). After the surgery her hair started falling out in clumps and she is almost bald now. She had beautiful hair...long and thick. Will her hair ever grow back? She is in her 40’s.

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Hair loss can be due to zinc deficiency, or iodine deficiency, both of which can accompany Crohns. These nutrients are essential for the working of the thyroid glands so question - is she having any thyroid issues?

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@eden

Hair loss can be due to zinc deficiency, or iodine deficiency, both of which can accompany Crohns. These nutrients are essential for the working of the thyroid glands so question - is she having any thyroid issues?

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Her blood tests are all over the place. I think it is the T4 that has been off. Thanks for the info...she has to see a Dr soon and is seeing a hematologist at the end of the month, so will see if they will check into this. Any other ideas?

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@sandyjr

Her blood tests are all over the place. I think it is the T4 that has been off. Thanks for the info...she has to see a Dr soon and is seeing a hematologist at the end of the month, so will see if they will check into this. Any other ideas?

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It is the T3 that is out of whack.

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@sandyjr

It is the T3 that is out of whack.

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Can you say what the readings of the T3, T4 and TSH tests are?

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Thyroid panel with TSH T4 12.4/ T3 25/ TSH 4.040 BUT T4 Free, Direct, S 1.35/ T3 Triiodothyronine 221

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It depends on which parameters the lab is using but the free T3 level could be considered normal. You must ask your health professional for an appropriate interpretation of these results. If these results are considered normal it doesn’t necessarily mean that an iodine or zinc deficiency is not playing a part in hair loss but do not let your daughter self treat with supplements - always consult an appropriate professional. There are other causes of hair loss and these should also be discussed. Your daughters age is probably in her favour to find a recovery of hair growth, given the right diagnosis. I

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My daughter has Crohn's disease and alopecia. Her GI doctor doesn't have any experience treating patients with both. Does anyone know of a GI doctor who does?

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@elliesugar

My daughter has Crohn's disease and alopecia. Her GI doctor doesn't have any experience treating patients with both. Does anyone know of a GI doctor who does?

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Welcome, @elliesugar. This must be distressing for your daughter.

According to this article:
- Can Crohn's Disease Cause Hair Loss? - Healthline: https://www.healthline.com/health/does-crohns-disease-cause-hair-loss
"People with severe Crohn's disease often experience symptoms outside their GI tract, too, like inflammation in the joints and skin. Hair loss increasingly appears to be one of these symptoms. In fact, a 2021 research review suggests a connection between IBD and alopecia, which is a type of hair loss."

I moved your question about Crohn's and alopecia to this discussion that @sandyjr started about her daugher that also includes helpful posts from @eden:
- Crohn’s disease treatment and hair loss: https://connect.mayoclinic.org/discussion/has-anyone-had-hair-loss-due-to-crohns-diseasetreatment/

May I ask how old your daughter is, Ellie? Might you be looking for a second opinion at Mayo Clinic?

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@colleenyoung

Welcome, @elliesugar. This must be distressing for your daughter.

According to this article:
- Can Crohn's Disease Cause Hair Loss? - Healthline: https://www.healthline.com/health/does-crohns-disease-cause-hair-loss
"People with severe Crohn's disease often experience symptoms outside their GI tract, too, like inflammation in the joints and skin. Hair loss increasingly appears to be one of these symptoms. In fact, a 2021 research review suggests a connection between IBD and alopecia, which is a type of hair loss."

I moved your question about Crohn's and alopecia to this discussion that @sandyjr started about her daugher that also includes helpful posts from @eden:
- Crohn’s disease treatment and hair loss: https://connect.mayoclinic.org/discussion/has-anyone-had-hair-loss-due-to-crohns-diseasetreatment/

May I ask how old your daughter is, Ellie? Might you be looking for a second opinion at Mayo Clinic?

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@colleenyoung Hi. My daughter is 16 years old. Yes, I'd be interested in a second opinion at Mayo clinic if there's a GI doctor who has a patient(s) with both Crohn's disease and alopecia.

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@elliesugar

@colleenyoung Hi. My daughter is 16 years old. Yes, I'd be interested in a second opinion at Mayo clinic if there's a GI doctor who has a patient(s) with both Crohn's disease and alopecia.

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Hi Ellie,
I recommend seeking a second opinion at Mayo Clinic. Here's more information of how to make an appointment request: http://mayocl.in/1mtmR63

Mayo has excellent pediatric GI specialists at the Children's Center and the team works across multidisciplines to help her with both Crohn's and alopecia.

Let me know if you have any questions about the process. You can self refer or ask her physician to make the referral.

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