Low temperature

Hi everyone. For the last few years I've noticed that I suddenly get either very cold or very hot. I've mentioned it to doctors but they've not really taken any notice. It's got to the point where I have to put gloves on in the house and get a hot water bottle to get warm again. I don't get white fingers although for years they have hurt if they get very cold. I use glove warmers if they get cold when I'm out. The house is always warm and it seems to be a problem with my body temperature regulator. I'm now taking my temperature and it ranges from 34degrees to 36.1degrees as a norm. It does go to 36.5 sometimes. When my temperature is very low I feel very unwell and very tired and exhausted. It was particularly bad during operations on my feet and neck (done under local anaesthetic) and the surgeons put extra blankets and warmers on me. I went down with the flu, chest infection, and urine infections after the ops. Has anybody come across this before. I have a new lovely rheumatologist and I mentioned this to her. She tested my thyroid which is fine but my IGL is a bit low. I looked up mitrochondial and I tick a load of boxes but with BD we do that with everything. Any ideas please?

14 Replies

  • hi so sorry your doctor is not helpfull i can see you have osteophorisis do you have fibromyalgia as well would like to help you please get back to me ,xx

  • Hi there, I do have fibromyalgia. The autoimmune disease I have incorpates about 30+ diseases. It includes vascultis. I tick all the boxes of lupus. I'm under Guys Louise Coote Lupus/rheumatology centre as my main hospital and use my local hospital for most of the other illnesses incorporated in the autoimmune disease. My local hospital is in charge of my osteoporosis, but they liaise with each other. I'm under Barts for high blood pressure. It's a real pain but I'm so thankful to the drs at Guys, as after nearly 50 years of trying I finally found a hospital who took me seriously. After another life threatening illness, my local hospital took biopsies whilst my whole body was covered by several forms of urticaria. Nobody had ever seen anything like it. The results showed things in deeper layers of my skin that have never been seen before. But at least I was being taken seriously. They've found 7 people with most of my symptoms but I'm the first person with all these symptoms. So they have named it after me. I would have preferred a handbag or a rose obviously, but joking aside I'm so grateful to them for taking so much time to try and understand what's going on in my body. It's a long difficult road but as my husband says 'you're still here'. Best wishes.

  • Inability to maintain body temperature is one of the joys of behcets I am afraid - sorry I know of know cure for that part of it either...

  • My body has been doing this for years, especially in the night. I will wake up and my legs are that red that I look like I have sunburn, then a couple of minutes later I will be freezing cold. I have always put this down to my BD. I am 54 now and it seems to me that it is worse now than when I was younger. It does feel that the temperature regulator does not work how it should. My doctors think all in my head and nothing they can do for me. My thyroid was fine the only thing that I have a problem with at the minute is my vitamin D which I am taking a supplement for the next 2 months. Thinking about it since having my vitamin D supplement I haven't had such extreme changing in my body temperature in the last couple of weeks, also I am sleeping better. Whether that is wishful thinking I don't know. All the best. Biddy xx

  • I can be like that. My body doesn't regulate its temp very well. Sometimes I can suddenly get colder & colder-shivering for no reason & then other times I overhear very quickly bit take oxybutyn for hyper hydrous which def helps with over heating but can leave me with a very dry mouth & have to carry water with me everywhere!

    My consultants are also dismissive. It was my suggestion about the oxybutyn. It's nice to know I'm not the only one with this problem!

  • I've been dealing with mostly being over heated for yrs. Hormones, thyroid tests,etc to no avail. Don't waste too much energy on the cold/heat intolerance thing as I just think our regulators are hooped. Most important to recognize signs and symptoms of infection/illness- un explained fevers either presenting alone or with rash, redness, cough,etc. A fever that does not respond or clear up with tylenol/advil within 48 hrs,etc.

    I hear your plight as I've been chasing a reason why I'm sweating like a pig most of time, and most recently freezing with sweaty feet and hands. I have to put my feet on a hot pad because big socks don't help-they are so cold my legs ache:/

    Sorry....no answers here:(

    Good luck!


  • Thanks. I get too hot as well. At least I'm over the menopause, my poor husband has enough of my 'God it's hot' and 'I'm so cold'.

  • I'll try again on my I Pad. I don't know what is going on with my phone .

    I'm glad I'm not the only one with this as well.

    Our normal body temperature should keep most bugs away and rises when we have caught something. We don't work like that all the time and so we're susceptible to catch all sorts of things. I don't understand why the Drs aren't very interested. I feel very unwell when my temperature is low.

    Something I read on gut problems was very interesting. Apparently eating even a crumb of raw/unpasteurised cheese fills your gut with good bacteria, it's better than probiotics. Don't eat it though if you're pregnant or breastfeeding. It was an article by the British Gut Foundation. I actually sent a sample off to them. It cost £75, but it was very interesting. I had lots of very rare bacteria but not enough good bacteria. The trouble was, I knew my stomach wasn't right but I didn't know what do do about it. My gut plays a huge part in my illness, if it's not right everything is worse. I bought some raw cheese yesterday and it's delicious. I'll let you know how it goes. The Drs arn't interested in gut problems of course unless it's a known normal problem. Have a lovely evening everyone.x

  • Funny you mention that-my guts have been an issue since childhood ( since born says mother), right now I'm at my wits end! I have to wait 2 more weeks for a barium swallow. I haven't been able to eat anything since Jan 26 besides bananas and yogurt. I got violently ill that evening and haven't been right since. I'm suspecting a yeast infection at back of my mouth and down the esophagus :/

    Your findings are very interesting. If you have any links-I'd love to read more:)

    I happen to be eating/drinking the yogurts with live cultures/bacteria 😉


  • I've had gut problems since I was very young. It got to the point that I became allergic/intolerant to practically everything. My diet is still very restricted but I can reintroduce some things every now and then. I lose them again too. The only carbohydrates I can eat is very well rinsed,white rice. I cannot even eat root vegetables or leafy green vegetables. Foods with any additives or sugar are out. But, oddly enough I had to take an antibiotic for a urine infection, which also works on the gut and since then I have been able to take back cheese and rice cakes. Doesn't sound much, but to me it's fantastic. It's only been a couple of weeks since the antibiotic, so I'll see how it goes. The gut is our second brain and so important. I've had 3 colonoscopies, 2 barium swallows and 3 tubes down the throat, and they couldn't find the problem I've got diverticular disease but that's not the problem. I've tried asking the Drs if there is someone I could see about the flora of the gut, but apparently there isn't. Mind you I haven't tried privately. You could try the British and American gut foundation. It's a joint enterprise. They may still do the test I had. It's worth having the results as I found out a lot of what could be causing the problems but not what to do about it. I'm hoping that armed with the results,I will at some point find help. If my gut is ok it will make a huge difference. It took years to work out what I can and can't eat. What meds I can take and can't take. At first the Drs didn't believe me, then after repeated serious reactions which nearly killed me, they saw for with their own eyes how serious it was. I became allergic whilst in hospital to water. I couldn't drink it or wash with it. I feel so sorry for you, I know exactly what you're going through. I've gone through it for years. I always eat food prepared by me. If we eat at lunch out I explain the problem and they have always been lovely enough to let me eat my own food. I now make my own soya yoghurt and soft cheese. Lakeland sell the makers, they're brilliant and very easy. I'm not sure how much longer I'll get away with eating them but I'll do it while I can. I'm not sure how you message privately but if you want to please let me know how you get on.if I can give you any pointers I will. It's such a mine field this food business. But so important to us to get it right. The gut foundation is easy to find on the web. You must be so distraught at the moment but you will find how to work out what you can have. I thought mine was thrush but it wasn't. It would have been easy to sort out. Very best wishes. X

  • Hi, what kind of reactions do you get? I've recently seen a doctor and we're thinking my problem might be Behcets and what you describe fits with what I experience. I've also had acute diverticulitis. In the last year I've developed a severe intolerance for foods with tyramine (so anything aged or processed, or even fruit n veg that isn't totally fresh). But my worst problem is how I react to medications and even supplements. I am sure that these reactions are at times life threatening - and like you - doctors don't believe me. So would be really interested to know what kind of reactions you experience, thanks.

  • Hi there,

    Not sure what country you live in, but in Australia there was a documentary program on our ABC channel called Catalyst that did two episodes on Gut Flora. I think it was called Gut Reaction. You might find it on YouTube. It's basically (sounds horrible, but the science seems to support it) transferring good healthy poo into the bowels if people who have inflammatory bowel problems.

    Flinders Medical Centre in South Australia are (were?) doing a trial on it with volunteers who have severe inflammatory bowel diseases. I rang the Flinders trial asking if I could volunteer, but they were only interested in people diagnosed with a particular bowel problem! not Behcet's.

    There are definitely places you can send samples for gut flora tests, but they are private and cost a bit. I have some really interesting information about all this - it may be from that Catalyst program. I'll have to dig it out and send links to you and nurse_ratchet above.

  • Sorry, this was supposed to be a reply to Janh above.

  • Oh brilliant. I'd definatly volunteer for that. I've heard of it. I've been in London at guys hospital to see my consultant, and while I was there, they were asking for volunteers to give blood for DNA testing to look for genetic mutations. I gave blood as I would do anything to get some proper answers and not just 'well we really don't know' and 'try this and try that' and at the end of it you're either really ill or it does nothing. In England there is no money spent on gut results. I keep banging on to the Drs about how the gut plays such a huge part in illness especially the difficult to diagnose ones. They all agree but can't do anything about it as there is no money. It's ridiculous as it must be cost effective in the long run and more importantly we wouldn't have to suffer as much and you younger ones would have a chance to live a better life. Oh well there's my rant for today. I've been exhausted since London as it's such a strain having to use stairs and the tube and the overground. The disabled are really let down here. If I need to use the wheelchair that day it's a nightmare. Still, I got there and back all for a 20 min appointment. They could have done over FaceTime, that would have been easier. Have a lovely Week Marushka-k, and keep well. Xx

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