Regulating Body Temperature - Pernicious Anaemi...

Pernicious Anaemia Society

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Regulating Body Temperature

NJMommy profile image
18 Replies

Hi all,

I've had PA for a year and I also have thyroid issues. Both are being treated appropriately. I was just wondering if anyone with PA has trouble regulating their body temperature. I could be sitting in an air conditioned room with other people that are comfortable and I'm sweating. I don't think it's my thyroid. Could my symptoms be a side effect of b12, or possibly the disease itself? Thanks in advance for any information!

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NJMommy
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18 Replies
Hidihi profile image
Hidihi

ditto on the hot sweats, but it can happen with so many other conditions as well i.e. thyroid, heart probs, ME/CFS' the menopause to mention a few.

NJMommy profile image
NJMommy in reply toHidihi

Thanks for the reply. What do you mean by ME/CFS? Don't think I have heart problems and only 42, so it's kind of early for menopause.

Hidihi profile image
Hidihi in reply toNJMommy

Hiya. yes ur rather young for a menopause. however, some ppl with thyroid probs can have an early menopause. ME/CFS is another condition where temperature control goes skew-whiff. if u had (CFS) Chronic Fatigue Syndrome, you would know cos it's sooo debilitating. you would be exhausted with a whole gamut of debilitating symptoms. it sounds that it 'could' be your thyroid. hope it settles down for you.

Polaris profile image
Polaris in reply toHidihi

My relative was misdiagnosed with ME/CFS for years when. It turned out to be severe B12 deficiency, Martyn Hooper was addressing the House of Lords in June this year. He wrote this:

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands and that is what I will be talking about on Tuesday. "

honor1a profile image
honor1a in reply toNJMommy

Hi Njmommy,

You can be peri-menopausal at 42, I have been peri-menopausal since i was about 40, I am soon going to be 56 & not yet through menopause, I like you have pernicious anaemia & my thyroid is "underactive" & having the same difficulty on my temperature control as you are, I now carry a small fan in my handbag, I also carry a wee mist spray 😰😰😓 x

Spareribs profile image
Spareribs

Us thyroidies tend to be cold, however I've been 'glowing' lately - since medication I suppose, then again I'm 'of that certain age'. Either way, broken thermostat.

Actually it's quite nice to be warmer for a change :D

Hidihi profile image
Hidihi in reply toSpareribs

can u pass the excess heat on this way......i'm freezing and it's only july????

Marz profile image
Marz in reply toHidihi

Do you have any results with ranges for your latest thyroid blood tests ? It could be you are under medicated. The Thyroid is the thermostat for the body. What dose of Levo are you taking ? Do you have Hashimotos ? As PA is auto-immune it could be that you have auto-immune thyroid illness too - Hashimotos.

honor1a profile image
honor1a in reply toMarz

Hi Marz,

Is Hashimoto's blood test different to the tft? I asked my GP yesterday about Hashimoto's & she has arranged thyroid bloods for Tuesday, I just want to be knowledgeable about it before Tuesday, thanks xx

Marz profile image
Marz in reply tohonor1a

The Anti-bodies to be tested are Anti-Tg and Anti-TPO in addition to the TSH - FT4 - FT3.

honor1a profile image
honor1a in reply toMarz

Thank you for that Marz 😁 xx

Frodo profile image
Frodo

I began having 'thermostat' problems in my early 40's - heat - then went cold, tending to get cold and shivery when others are warm. But have heat intolerance too, heat (eg walking in hot sun) triggers migraine. The cold/shivery thing has improved a fair bit with B12 injections. I suspect thyroid as it is one of the known symptoms, but tests say no.

Polaris profile image
Polaris

Hi NJM - I've had this problem for a number of years - have Hashimosto's and B12 def. I've been taking Thyroid-S for a couple of months now and there seems to be some improvement this summer - I still can't work out though whether it's having treated with B12 or changing to NDT that has brought about improvement....

Lucas74 profile image
Lucas74

I'm 41 and I've been diagnosed with B12 deficiency (awaiting test results for PA) and I've suffered from excessive sweating for the last 10 or so years exactly as you describe. It's got to the point where I know it impacts me socially as I make decisions to avoid situations where I know I could end up sweating (which could be almost anything).

Interesting to see the responses. If you make any progress please let me know as I'd love to be able to gain some control over it!

Also, is there a forum on HealthUnlocked for excessive sweating?

solarised profile image
solarised

Hi everyone,

It could be temperature dysregulation caused by neurological damage.

I've had this for many years where I become hot and start sweating as though the room temperature has just gone up ten degrees.

I also go very cold and it feels like hypothermic shock. I will shiver so violently that I can no longer stand up and I am unable to breathe. This can be triggered by something like a cold drink.

My doctor asked me to monitor my body temperature when these episodes happen, which we did and my temperature remains normal throughout.

I was diagnosed b12 d earlier this year and after the loading injections these symptoms disappeared for about four weeks

_tracy_ profile image
_tracy_

In April of this year I was diagnosed with small fiber nerve damage at Mayo Clinic. Small nerves control sweating and cause that familiar pins and needles feeling. When damaged they can cause either excessive or no sweating. I'm in the latter situation, which is dangerous as it is very easy for me to overheat and my body cannot cool itself. I now carry a small spray bottle filled with water so I can mist myself if I need to. I have a friend who is equally sensitive to heat and she bought a cooling vest that she soaks in water before putting it on (vest itself is dry on the inside). Water evaporates from the outside to keep her cool during the day.

Like solarised, if I drink a cold drink it can make me shiver like crazy.

My sensitivity to heat and cold seems to only have gotten worse since I was diagnosed late last October (2014).

Gambit62 profile image
Gambit62Administrator

I don't know if it is related to B12 deficiency or not as I had undiagnosed problems for decades but I've always found that I cope much better with heat if I do some exercise that leaves me sweating each day - generally a good jog for me. Know that is difficult when you are wrestling with energy levels but thought I'd mention it - particularly as there was an article in the times about 45 minutes of exercise a x5 per week being good for menopause symptoms like hot flushes.

Serendipity16 profile image
Serendipity16

I have raynauds so respond more extremely to temperature change than your average person. This means cold = colder and hot can be hotter. Not sure if having b12 def or injections has altered this or not and it sounds like you have the opposite reaction to temps? Hope you figure it out

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