Post-concussion (or other TBI) pituitary injury and dysregulated hormones

[Anonymous]

Has anyone experienced hypothalmic or pituitary hormonal dysregulation after concussion. What were your symptoms? How did that connect to the kind of symptoms you had? What kind of tests were run to figure this out?

Any recommendations for specialists - pituitary or neuroendocrine - in DC, NYC or Boston?

[Anonymous]

Anonymous wrote:Has anyone experienced hypothalmic or pituitary hormonal dysregulation after concussion. What were your symptoms? How did that connect to the kind of symptoms you had? What kind of tests were run to figure this out?

Any recommendations for specialists - pituitary or neuroendocrine - in DC, NYC or Boston?

Is this for an adult or for a child?

[Anonymous]

Wow that’s serious. What was the accident? I only know of one person who had this and it was after severe head trauma in a car accident.

[Anonymous]

It's for an adult.

[Anonymous]

Anonymous wrote:Wow that’s serious. What was the accident? I only know of one person who had this and it was after severe head trauma in a car accident.

Thanks for asking these questions. I feel like a PSA. Chronic anterior pituitary dysfunction after TBI (which includes concussion) has a prevalence of 16-60% (depending on the group studied). Pituitary changes can happen after ANY severity of concussion or head injury. Pituitary controls: growth hormone, thyroid hormones, reproductive hormones and adrenal hormones. It definitely happens after sports concussion. People are usually not screened immediately after the injury, but if there are chronic symptoms (fatigue, cognitive symptoms, loss of menstrual cycle or libido, etc.) Initial labs can look normal, but if symptomatic, patients should be screened with dynamic testing for the pituitary hormones. Interestingly, women may be more vulnerable to this depending when in their menstrual cycle they are injured. Growth and sex hormones are the most frequently affected.

More here: https://concussionandcte.org/pcs-resources/treatments/

This is why we are looking for a pituitary endocrinologist or neuroendocrinologist who specializes in this.

[Anonymous]

I am not sure if this is at all similar, but I was diagnosed with a benign pituitary adenoma when I was in my mid-30s. I never had a concussion nor do I remember ever having a bad fall where I hit my head but the condition is sometimes caused by head trauma.

The adenoma was found when I could not get pregnant due to crazy high levels of prolactin, the hormone that tells the body to produce breast milk after pregnancy. My body thought it had just been pregnant, so I was not ovulating. Once this was all discovered -- it took significant time and testing -- I was put on an oral medication (bromocriptine) to suppress the production of prolactin via my pituitary and I soon became pregnant, thankfully. After having my child, I produced massive amounts of breast milk and even now a decade later when I recently needed to temporarily stop taking the medication, within days I began lactating again.

Again, I am not sure if this is similar, but I wanted to share in case it was helpful.

[Anonymous]

Diabetes Insipidus can be a complication of a head injury as a result of pituitary dysfunction. Excessive urination and thirst are symptoms

[Anonymous]

Anonymous wrote:I am not sure if this is at all similar, but I was diagnosed with a benign pituitary adenoma when I was in my mid-30s. I never had a concussion nor do I remember ever having a bad fall where I hit my head but the condition is sometimes caused by head trauma.

The adenoma was found when I could not get pregnant due to crazy high levels of prolactin, the hormone that tells the body to produce breast milk after pregnancy. My body thought it had just been pregnant, so I was not ovulating. Once this was all discovered -- it took significant time and testing -- I was put on an oral medication (bromocriptine) to suppress the production of prolactin via my pituitary and I soon became pregnant, thankfully. After having my child, I produced massive amounts of breast milk and even now a decade later when I recently needed to temporarily stop taking the medication, within days I began lactating again.

Again, I am not sure if this is similar, but I wanted to share in case it was helpful.

Thank you, very helpful!

My understanding is that a pituitary adenoma is a kind of benign tumor on the pituitary that can cause the dysregulation of prolactin, so the mechanism is a little different than pituitary injury due to TBI (tumor vs. mechanical or vascular damage), but, high prolactin does happen after TBI.

I sort of dismissed high prolactin because the main symptom described is the "leaking milk" and my family member doesn't have that. Can you share your symptoms of the high prolactin? In particular, did you have any cognitive symptoms? What testing did you have to discover this? What kind of doctor figured this out?

Thanks for any further info.

[Anonymous]

Anonymous wrote:Diabetes Insipidus can be a complication of a head injury as a result of pituitary dysfunction. Excessive urination and thirst are symptoms

Thank you, I was wondering about this.

[Anonymous]

This happened to my cousin after her car accident when she was 22. There were concerns she may never be able to have kids, but under the care of an endocrinologist she was able to have her two kids. It's going to be heavily individual but my cousin did manage to have her family despite rhis.

[Anonymous]

A regular endocrinologist should be able to handle this. The pituitary is endocrinology mission control.

[Anonymous]

Anonymous wrote:A regular endocrinologist should be able to handle this. The pituitary is endocrinology mission control.

Good luck with finding a good endocrinologist who truly cares and put dedication. I’m on my 7th endocrinologist digging through answers that make sense.

[Anonymous]

Anonymous wrote:

Anonymous wrote:A regular endocrinologist should be able to handle this. The pituitary is endocrinology mission control.

Good luck with finding a good endocrinologist who truly cares and puts dedication. I’m on my 7th endocrinologist digging through answers that make sense.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I am not sure if this is at all similar, but I was diagnosed with a benign pituitary adenoma when I was in my mid-30s. I never had a concussion nor do I remember ever having a bad fall where I hit my head but the condition is sometimes caused by head trauma.

The adenoma was found when I could not get pregnant due to crazy high levels of prolactin, the hormone that tells the body to produce breast milk after pregnancy. My body thought it had just been pregnant, so I was not ovulating. Once this was all discovered -- it took significant time and testing -- I was put on an oral medication (bromocriptine) to suppress the production of prolactin via my pituitary and I soon became pregnant, thankfully. After having my child, I produced massive amounts of breast milk and even now a decade later when I recently needed to temporarily stop taking the medication, within days I began lactating again.

Again, I am not sure if this is similar, but I wanted to share in case it was helpful.

Thank you, very helpful!

My understanding is that a pituitary adenoma is a kind of benign tumor on the pituitary that can cause the dysregulation of prolactin, so the mechanism is a little different than pituitary injury due to TBI (tumor vs. mechanical or vascular damage), but, high prolactin does happen after TBI.

I sort of dismissed high prolactin because the main symptom described is the "leaking milk" and my family member doesn't have that. Can you share your symptoms of the high prolactin? In particular, did you have any cognitive symptoms? What testing did you have to discover this? What kind of doctor figured this out?

Thanks for any further info.

PP here with the benign pituitary adenoma. At the time of discovery, by a fertility specialist via a basic blood test, my prolactin levels were significantly above the normal range. It came as a surprise to me for I did not have any symptoms other than not being able to conceive. I did not have any cognitive symptoms whatsoever. Wishing you luck OP.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I am not sure if this is at all similar, but I was diagnosed with a benign pituitary adenoma when I was in my mid-30s. I never had a concussion nor do I remember ever having a bad fall where I hit my head but the condition is sometimes caused by head trauma.

The adenoma was found when I could not get pregnant due to crazy high levels of prolactin, the hormone that tells the body to produce breast milk after pregnancy. My body thought it had just been pregnant, so I was not ovulating. Once this was all discovered -- it took significant time and testing -- I was put on an oral medication (bromocriptine) to suppress the production of prolactin via my pituitary and I soon became pregnant, thankfully. After having my child, I produced massive amounts of breast milk and even now a decade later when I recently needed to temporarily stop taking the medication, within days I began lactating again.

Again, I am not sure if this is similar, but I wanted to share in case it was helpful.

Thank you, very helpful!

My understanding is that a pituitary adenoma is a kind of benign tumor on the pituitary that can cause the dysregulation of prolactin, so the mechanism is a little different than pituitary injury due to TBI (tumor vs. mechanical or vascular damage), but, high prolactin does happen after TBI.

I sort of dismissed high prolactin because the main symptom described is the "leaking milk" and my family member doesn't have that. Can you share your symptoms of the high prolactin? In particular, did you have any cognitive symptoms? What testing did you have to discover this? What kind of doctor figured this out?

Thanks for any further info.

PP here with the benign pituitary adenoma. At the time of discovery, by a fertility specialist via a basic blood test, my prolactin levels were significantly above the normal range. It came as a surprise to me for I did not have any symptoms other than not being able to conceive. I did not have any cognitive symptoms whatsoever. Wishing you luck OP.

Very helpful. I sort of put prolactin lower on the list because of no symptoms, but I will make sure prolactin gets tested. THanks!