Low body temperature

Posted by smccoll @smccoll, Jun 30, 2022

My daughter is having "freezing episodes" every day where her body temp is falling to between 93.2-96 for about an hour at a time. During this spell, her heart rate falls to between 37-44. She also gets a rash-y texture on her cheeks. She has flushing a lot but this is different with the rash-like appearance (see pic).
She had transsphenoidal surgery a year ago for what was believed to be Cyclical Cushing's disease but it was not a success and she still has all the symptoms she had BEFORE surgery plus worsening symptoms. She had had high AM cortisol draws, didn't suppress one dex test with a 7.56 & 5 high 24 hr UFC's… but the neurosurgeons we've consulted aren't certain enough that it is her pituitary to do a second surgery. To make things a bit trickier, her dad had a pheochromocytoma at age 17 and other paternal relatives also had neuroendocrine tumors. I did find a link where pheochromocytomas can cause temperature dysregulation. However, she's had three different metanephrine blood draws and none have been high.
Anyways, back to the freezing episodes – they started as early as November but have increased in frequency lately to several a day and none of her doctors seem to know what to think of them. It is very worrisome to me as it seems like her body is shutting down when they happen. The only thing I can find is that maybe she's experiencing adrenal insufficiency? But, to make it even more confusing, she still has episodes of HIGH cortisol. It seems like she is swinging from low to high or high to low DURING these freezing spells. She has plenty of other symptoms but I'm trying to not write a book. Thankfully her endo has ordered a gallium 68 scan but we are waiting on insurance approval. We did apply to Mayo Clinic but they turned her down as they said they had too many patients right now.
Sooo, does anyone have any idea about these freezing episodes? Thanks in advance!!

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I should add that her endocrinologist has said she needs to go back into surgery. And he thinks he sees a 2mm microadenoma. The problem with that is the neurosurgeons we've consulted aren't convinced enough. The last thing I want is for her to have another brain surgery that doesn't work.

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If it hasn't already been considered, sometimes temperature dysregulation can happen due to the inability of the hypothalamus to manage body temperature. There can be other symptoms as well. It took a number of years for this to be diagnosed in my nephew, although his problem is inability yo keep his temp down. Here is just one article on the topic: https://www.medicinenet.com/symptoms_of_a_malfunctioning_hypothalamus/article.htm

Has this issue ever been discussed?
Sue

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@sueinmn

If it hasn't already been considered, sometimes temperature dysregulation can happen due to the inability of the hypothalamus to manage body temperature. There can be other symptoms as well. It took a number of years for this to be diagnosed in my nephew, although his problem is inability yo keep his temp down. Here is just one article on the topic: https://www.medicinenet.com/symptoms_of_a_malfunctioning_hypothalamus/article.htm

Has this issue ever been discussed?
Sue

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Thank u for your response! I have read about that & it would make sense – she also hasn’t had a period in 18 months, well before her surgery & that could be the hypothalamus as well. The problem is… none of her doctors are considering this 😂

The other thing, it’s weird how these spells come & go. So strange.

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Poor baby. Her flush looks a lot like my daughter’s when her body temp goes too high. I was referred to your post from one I posted-my daughter has unregulated body heat- stress can bring it on as well as humidity. She has had episodes of being cold for no temp reason. I read this can be caused by head injury- or endocrine as your saying.
My daughter lived w/ dad in WA when she got sick in college he sent her to me. No knowledge of body temp issues but was having psychosis/hallucinations I’m on Medicare retired so fam & community mental health referred her to mental health inpatient. She now has a DX of schizophrenia- no referrals to endocrinologist when your on Medicaid. I have not asked for an appointment to Mayo Clinic..but I sure pray you get accepted. If you are DX with a disability after age 22 you loose- you can’t get medicare ever unless u work which she can’t- and 90% of Schizophrenia is DX after age 22- although like your daughter she could have been born with her condition.

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@smccoll

Thank u for your response! I have read about that & it would make sense – she also hasn’t had a period in 18 months, well before her surgery & that could be the hypothalamus as well. The problem is… none of her doctors are considering this 😂

The other thing, it’s weird how these spells come & go. So strange.

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My daughter’s body temperature dysfunction comes and goes as well. Sometimes it’s a combination of stress and heat- mostly humidity.

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@smccoll

Thank u for your response! I have read about that & it would make sense – she also hasn’t had a period in 18 months, well before her surgery & that could be the hypothalamus as well. The problem is… none of her doctors are considering this 😂

The other thing, it’s weird how these spells come & go. So strange.

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@smccoll, how is your daugther doing?

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She finally has a gallium 68 this week. She had a high pancreastatin come back from the end of august. She’s continuing to have several hypothermic episodes per day & repeated low heart rate warnings from her Apple Watch. Her flushing has increased quite a lot where she is flushing much of the day. She has nausea every day & has now lost about 12 lbs since January. She was already tiny & is now weighing 117. However, her face is so swollen. She has incredible fatigue & literally cannot hardly function in “real life” anymore. We are incredibly concerned about her.

Thank you so much for asking!!❤️

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Hello, I just joined the Mayo Clinic Connect group. I just saw your post about daughters drop in body temperature. Have the doctors ruled out Systemic Lupus? When I have a sudden systemic lupus flare my body temperature drops dangerously low. The weight changes, swollen face, red cheeks, incredible fatigue…. all are what I've dealt with. Hope this helps!

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@gigi6

Hello, I just joined the Mayo Clinic Connect group. I just saw your post about daughters drop in body temperature. Have the doctors ruled out Systemic Lupus? When I have a sudden systemic lupus flare my body temperature drops dangerously low. The weight changes, swollen face, red cheeks, incredible fatigue…. all are what I've dealt with. Hope this helps!

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Hey there, no one actually has checked her for lupus or any other autoimmune. I’m having a hard time getting anyone to check anything. I’m taking her to a new Dr tomorrow & am going to ask for bloodwork to rule out Lyme, autoimmune & MCAS.

Do you lose weight with lupus? Also, would it cause someone to not have a period for almost 2 years?

Thanks so much for your help!

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@smccoll – I’m sorry for your daughter having all these symptoms, but no diagnosis.
I don’t know if I can offer much help, but my daughter had Cushing’s Disease with pituitary adenoma at age 27. How old is your daughter?
Before her surgery she always had low body temperature, now normal. She also had tachycardia before diagnosis.
We have learned that Cushing’s has so many faces.
What I think is important for you now is to get a team of endocrinologists that specialize in pituitary diseases. I’m sorry they didn’t find any tumor at her transsphenoidal surgery.
Are you seeing specialists at a major university medical center?
Make sure that tests indicate an adenoma before someone attempts surgery again. Also not all neurosurgeons are trained in pituitary surgery.
My daughter was treated at UVA in Charlottesville, VA. We went there because they have a highly regarded dedicated pituitary center. Where do you live?
By the way, did you consult with a cardiologist regarding her low heart rate?

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