Plummeting Body Temps

[DoozlyGirl]

Hi there,

I have read through the previous posts on body temperature and haven't seen my situation mentioned. Anyone have plummeting temp? I, too, have a low body temp. If it reaches 98.0, which is not often, I feel pretty decent. I feel worse at 97.5 and even worse at 97.0. But every morning between 9:00 and 11:00 am, I have these episodes, where my vision goes blurry, my temp plummets (gone as low as 94.9), my HR drops to 40's (gone into 30s), my breathing gets really shallow. By this time, I am back in bed (if I was up before then) and lose consciousness for the next hour or so. If I am not awake before this time, there is NO WAY I will awaken until my temp comes back up. My alarm could be going off and I will not be able to be awakened during this episode. I am essentially hibernating.

Last month, I was at a conference and had this episode while in a session and couldn't lie down for about 15 minutes. By then, my body was trembling and it looked like a seizure, but I could hear my friend talking to me. it. Found some space in the office to lie down, elevated my legs, and she grabbed three winter coats and put on top of me. 30 minutes later, it was over and after 2 bottles of water and a can of V-8 I was well enough to go back to the conference. I've had several similar mini-episodes later in the day, but they were shorter in duration.

Anyone familiar with plummeting temps? There are so many knowledgeable people on this forum, I am very interested in your comments and perspectives. Thanks in advance for your thoughts.

Lyn

[ramakentesh]

Definately - I feel cold quite often and tend to overreact to cold situations with raynaud's type things. I can even get all shivery in fairly mild conditions. Pre POTS i used to ride to school in near snow in a tshirt LOL.

Doc says its probably got to do with the low blood volume that occurs in POTS.

[HopeSprings]

This is something I have been looking recently. I have been sick this week and I was feeling feverish (my skin felt HOT) so I took my temperature and it read 96.5. I was like, huh? Took it again, 96.8. Been checking on and off for a few days - it pretty much stays in the 97's. I am going to try and see if it correlates with any symptoms. I think low body temp has been talked about here before. I am definitely COLD when others are not and wonder if it's related. I'm sorry I can't add to your understanding of WHY this occurs or what the relationship is. But I would guess it is ANS related. If you feel better when your temp is higher, maybe there is some treatment approach there? Not sure how to RAISE body temp. What did the Dr's who diagnosed you say about it?

[corina]

when pots started i was extremely cold, not able to get warm by myself, or putting on loads of clothes. used to take a hot bath every day around noon to get warm, then dress warmly and got into bed to stay warm for as long as possible.

things got fixed when i started mestinon. i gradually built up to 120 mg 3 x daily and only got cold again when the meds wore off. though it didn't cure all of the pots i think being able to stay warm all day to me was a HUGE improvement!

hope this helps, take care,

corina

[DoozlyGirl]

Thanks for your responses. During my TTT, I was not diagnosed with POTS, but I have been monitoring HR, BP and temp over past 24 hours and have caught 8 episodes of >30 bpm increase in HR. This is funny to me, because I didn't realize my HR was increasing. In the past several months, I lost my sympathetic overdrive (tacky, sweaty, etc) and have been in parasympathetic overdrive, where my HR is faint, hovers in the mid 40's for hours and I can't get off the chair.

Naomi,

I read that body temp is supposed to change only 0.5-1.0 degrees in any give day and most temps stay within 0.5 degrees of their basal temp. Have you figured out your basal temp yet? This is your body temp the first thing when you wake up in the morning. I took mine for three days, then averaged them.

My Autonomic Neurologist feels that my hypothalamus is at the the core of my temp dyregulation, which certainly falls within sudmotor and cardiovascular autonomic neuropathy. He has no idea how to treat my temp issues either. Meanwhile, for years, I have felt my Hashimotos hypothyroid is being undertreated, and a recent TPO proves it, but my PMD(whom I adore) won't increase my dose of T4(only at 50 micrograms!) and/or add T3. I have an appointment with an endo in 2 weeks, who supposedly treats Hashi's with T3 considers saliva cortisol and adrenal insufficiency. I called and spoke with her nurse. I am hopeful, since there was an 8 week wait to get in and they found an appointment for me in only 3 weeks. She is only 32, so I am hoping she's more progressive then the old guard endos I've seen.

Thanks again, Lyn

[potsgirl]

Lyn,

Do you have any symptoms when you go from lying to standing and your HR increases by <30? What does your BP do? There are doctors who don't think there's a problem unless you're symptomatic. I also have orthostatic hypotension, but I'm very symptomatic. My temp also hovers around 96.5, but I don't have the extreme reactions you suffer from. Isn't there anything your doctor can do? Perhaps an endocrinologist or a POTS specialist?

If your heart rate is going into the 40s, and it sounds like you're quite symptomatic with this, you may want to ask your cardiologist about wearing a Holter Monitor for 24 hours or a couple of days. You would want to check for bradycardia. My heart rate went into the 30s and 40s when I first got sick with heart issues, and my cardio recommended a pacer. It's been very helpful.

Take care,

Jana

[DoozlyGirl]

Jana,

Thanks for your post. Been offline for a few days, sorry for the delayed response. I am symptomatic upon standing, much worse in the morning, but I always figured it was the OH due to BP, not OI/POTS due to HR. I see a local Mayo trained endocrinologist next week, so crossing my fingers...

I wore a 3 week Holter last spring, when I was first diagnosed. My HR ranged from 25 at night during sleep, which prompted a sleep study and diagnosis of 3 sleep disorders and highs of 150 with lots of tachy/sweaty notations. Seeking a endocrine triggger for BP issues. Just found blood values from last year that don't make sense. My aldosterone at baseline and 30 minutes post ACTH both hovered at 40, with a normal of 16. My plasma renin activity was 1.6, which in the aldosterone/PRA ratio was 2.5 times normal. Since aldosterone regulates BP, hoping this gets the interest of this new endo.

Thanks, Lyn