Does anyone know if Lupus causes low body temperature?
After a bad bout of gastroenteritis in April 2019 the doctor said it would be a good idea to invest in a thermometer to check for fever any time I was feeling ill and to periodically check to keep an eye on myself. Because of this I know my normal temperature is around 36.4.
The last couple of weeks my temperature has been lower going between 35.3 and 35.8 (a couple of times it’s been 36.2). I don’t feel particularly cold but have felt off colour on and off. I had a UTI a month ago and the antibiotics and the cranberry juice I was drinking has started up my old stomach problems of GERD and suspected gastritis (the latter I’m still waiting to see about as I’ve not been able to get an appointment with the current situation).
Does anyone know if low body temperature is another wonderful Lupus symptom?
Many thanks.
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Froggie70
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Hi Froggie70 I too get this a lot of the time, usually when I have an infection brewing but can also happen at other times for no reason.
I feel a sudden drop in body temperature and have sometimes had to get into bed just to warm up, this prompts me to take my temperature, it has been as low as 35.5 at times. I have Raynaud's, not sure if it is to do with that?
I used to worry about it but now I just accept it as one of the symptoms and it always resolves eventually!
I often wonder about many of the weird things that have started to happen since this all started, it's a very strange disease with so many different symptoms.
I also suffer with GERD and am on omeprazole long term for this, I have problems taking some medications because they make the gastritis worse. I recently had to stop Azathioprine after a week as it was burning my stomach 😫.
I hope you're feeling better after your UTI and that you get an appointment in the near future.
It’s funny how things can go along not too bad and then for no (apparent) reason it’s one thing after another.
I do think my stomach problems stem from methotrexate, I tried the metoject pen but sadly had a bad reaction to that after 6 weeks as my legs were covered in a rash that wouldn’t go so it was back to the tablets.
I have a telephone appointment this morning with Rheumatology to discuss Azathioprine reaction, I was wondering if they might suggest Methotrexate next but I'm already on 80mg omeprazole to control gastritis 😫.
Hope you get on ok. I’m on lansoprazole and usually double up for a month and keep to quite a plain diet for a few weeks and things usually calm down. Unfortunately it’s happening more often.
Thanks 😊 just had the telephone appointment, they want to try Methotrexate next but are bypassing the tablets and going straight to the injections. I hope it works🤞
Hi there, I am the same, always assumed that it was my low thyroid but my ability to regulate temperature is non existent.
Totally get the getting into bed thing, I feel like I can’t stay awake when my temperature drops to 35. 5... off I go to bed and sleep it off. It usually takes about 2-3 hours to feel better.
Hope that you can find ways of coping with it as I think it is just one of those things that is part of our lives now 🤪
When I get an infection or have a flare my temperature can plumate.
In March I had another kidney infection after having a lidocaine infusion. I took my temp. It was 33.6. I thought " bloody hell, I'm dead!" I checked it several times and it was before lockdown so I took it on another person and it turns out that my thermometer was working fine!
33.6 is quite low. Please keep an eye on this, it does not feel natural even for lupus and would call my GP just to double check. Do you feel the temperature being low, do you have sweats or shivers for instance.
Thanks for replying. My temp is actually 35.3 (33.6 was happytulip). I always have BP on the lower side anyway, it’s 82/50 today. I do feel quite warm but not in a feverish sort of way. I will keep an eye on things though. Thank you 🤗
Vaso dilation is when your blood vessels are dilated instead of more sturdy or more constricted. It can cause low BP which can also cause you to feel a bit hot and sweaty and fuzzy headed.
If you've ever fainted that is when your BP has dropped into you boots, likely because your blood vessels have drastically dilated. Your body is clever though because it means you land up on the floor, allowing your blood to get back up to the brain and it almost resets itself. Obviously the cause of the faint needs to be investigated.
I went on a tangent, sorry. But if you have ever fainted the initial fuzzy, hot feeling can be due to vasodilation.
Vasodilation has many causes. Medications, heat, viruses, blood pressure problems, cardiac problems, the list is endless.
Lots of people walk around with a really low blood pressure and don't even notice it.
I used to have a very low blood pressure for years and had no problems but one day I got poorly and now need medication to keep it high enough.
Thank you, you’re really good at explaining things. The body is an amazing thing. I used to be quite bad for fainting in my teenage years (long time ago) but over the last few years I’ve had a couple of episodes, something to keep an eye on. Thanks again and stay safe. 🤗
Yup, if I took that and got it on a patient iI'd put them is resus! But I knew it was my ANS. I needed hot water bottle, a hat, a hot drink and wooly socks....freezing toes.
My problem is that when I get really sick my temp does not budge because I can't mount an inflammatory response.
So the docs look at my temp of 37 and say "you're fine." But they have missed a near sepsis episode with me.
Fortunately my ID consultant has now written a management plan so I get taken seriously. (Hopefully) 🤞
It's difficult for them because my heart rate and blood pressure are chemically managed by medications and my bloods never mount an immune response.
So from a doctor's point of view they are looking at a person who says that they are really unwell but has normal obs, normal bloods etc.
But my BP and heart rate are only "within normal limits" because I've eaten a box of beta-blockers to slow my heart rate down and taken extra fludro to keep my BP up.
I have to point that out to them.
It's when they try to discharge me from A&E and I stand up and hit the floor that they realise I was talking sense.
Fortunately, I now have a management plan from all my consultants. It's such a relief and I'd urge anyone who has similar problems to do the same.
If I need to go to A&E it's there on my notes and I have a copy on my phone .
Hello Froggie70, I have low body temperature from time to time. I had a recent gastroenteritis/virus experience (Feb 17)and my temperature was very low and lack of oxygen in my blood. Lupus is a complicated illness. My advice is that keep your body warm. For instance if I stay outdoors, at a garden or a pub longer than I am supposed to, it takes two three hours to get my body temperature to normal. I feel frozen to the bone. I have heating in my room and the best example is, last night I slept with a t-shirt and cashmere cardigan and a duvet. I think our body is more sensitive. It also changes due to infections. Hope this helps. With love, Lx
Lupus attacked my autonomic nervous system, hence why I have POTs. The ANS is responsible for alot in the body. Alot of my symptoms are related to ANS dysfunction.
Glad you replied Kay, I know it's an issue with you too x
Hi Froggie - I have noticed peeps talking about this more and more. Sorry you are going through this. Your post really resonated as the other day when recovering from a UTI I took my temp and it was 35.8 - I thought that cannot be right - that's clinically hyperthermic! Since as far back as I can remember I get chilled to the bone - I have raynauds but take nifedipine (or now another type as discontinued the MR version of it which I need),and shake.... this isn't necessarily during the winter either. - can be in the summer.. So I guess it is something Lupus related as everyone who has responded can relate -so I'm guessing there are hundreds more on here that can too and that it is obviously a lupus "thing". Ever since very young (teens) I can remember saying my "thermostat doesn't work" ie my internal thermostat! I've always been aware my body doesn't work like other peoples and it led me to feel very different as a teenager. My guts have never worked well at all either, well nothing really - so maybe I'll talk to my rheumy about ANS next time, but am waiting on a rebook of my first Gastroenterology appointment. I was on antibiotics for my UTI too (and still am as antibiotics can knock your system for a while I'm guessing you know very well and as my GI tract (start to finish!) has been really bad over the last 6mths I started taking high quality probiotics. I went to Holland &Barrett (pre lockdown!) and they recommended "Probio 7" which has 10million friendly bacteria and is "suitable for use with antibiotics". I used to take probiotics in my teens (40yrs ago!) as I always had gut issues. I have realised more and more I need to remember the things I used to take that helped - not sure why I stopped (possibly being broke when I left home ;). Anyway, thanks for posting, and I hope you are feeling nice and toasty today wherever you are - it's positively balmy here in the south :). Take care x
Hello DJK99, thank you. What a lovely post. You guys are all brilliant, there are so many weird and (not so) wonderful symptoms with Lupus that it’s hard to know what’s what and if I contacted Rheumatology every time I’d be struck off (not that they ever help anyway).
Funnily enough I used to say I had a wonky thermostat but I was the other way, the joys of being a certain age. And like you suffered with stomach problems since my teens. I have IBS and the methotrexate hasn’t helped either.
It’s dry and warm here today, in fact the weather has been great, just typical seeing as we can’t get out.
Hey you're welcome... love to discuss all this as it's so ruddy isolating otherwise isn't it! I'm on methotrexate too but my guts have been up the spout since teens like you - actually since I was 5 that I can remember! And it certainly wasn't due to lack of a healthy diet as my father was extremely up on all that. Actually I remember it starting when I went to tea at a friends and had white bread. That was it! Nothing happened for days and my ma gave me milk of magnesia.. plus I was back on the high roughage diet at home. I won't touch the stuff now.. although I did this Feb at my birthday do and well... I so wish I hadn't... weeks of hell... and if your gut goes wrong it seems everything else does. In fact,. I sent my rheumy a research paper (bet he loved that on the link between lupus and the microbiome or something... hang on I'll put the link here.... sciencedaily.com/releases/2... . Oh and re the certain age... yes, been through that... but all my life I couldn't manage heat or cold... takes ages to adjust to changes in temperature... and weather changes generally have a very bad effect - did you see my research paper i Posted a couple of months back regarding weather affecting those with SLE flares? I can certainly vouch for it with those storms.. in a right old state. Anyway - yes, today is lovely - so very sorry you cannot get out at all. Do you nothave any outside space? I hope you have a window you can sit by. My brother goes into his bedroom and opens his window up and jsut relaxes in the breeze for a couple of hours. Poor chap has Parkinsons and Lewy Bodies - he's only 60. Hey ho. Sending a hug. Dx
Hello. Thanks for the link, I’m going to start a diary to see if there’s a correlation between my stomach and flares as I’ve had a flare for the last few weeks and my stomachs been bothering for about the same time (I think, memory isn’t too good either).
I can get out the back door but my nutty neighbours on both sides have not been following lockdown and it’s been going like a fare with visitors so feel safer inside.
It’s good your brother can get some fresh air despite being inside, as you say poor guy being only 60 with these illnesses. I hope he is getting on ok in lockdown.
Thanks for replying it was good chatting. Take care. X
My body temperature is all over the place day and night. I find usually during the day I have a low body temperature even when I have an infection.
In the last few months I have started having horrible night sweats.
I have Raynaud’s thrown in for good measure too so hands and feet always like ice, better since starting a medication in the last six months for the Raynaud’s.
I never know what is related to my Lupus, RA,Sjogren’s or other symptoms from GERD and allergic retinitis and B12 deficiency or if it is something else.
I think there has to be a link with auto immune conditions and body temperature though. Seen a few posts about low body temperature and night sweats recently. x
Hi, although I don’t have Raynaud’s I have always got cold feet along with lots of strange other intermittent symptoms. I know that Lupus can be different for everyone but it would be brilliant if there was a comprehensive definitive list of symptoms.
Yes... when I get sick, I often feel chills more than fever. Chills or fever are often a sign the body is fighting an infection.
I have a lower than usual body temperature all the time, which can be caused by a variety of things. In my case I have low thyroid in addition to lupus which can be responsible for that. People with lupus often eventually get low thyroid problems and need to get that checked.
It's also common for temperature to drop with age. So older people can have lower temperatures that are not necessarily a sign of a problem, just an age-related drop.
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on the link between lupus and the microbiome or something... hang on I'll put the link here.... 
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