British Liver Trust
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Feeling Cold

Hi, I'm new on here. Was cured of Hep C exactly one year ago. Left with cirrhosis, now awaiting assessment for transplant due to hepatoblastoma.

My worse side effect is feeling so constantly cold. Even on a warm day I am to be found wearing a thick jumper and cardigan, wrapped in a blanket and clutching a hot water bottle.

Please tell me that I am not alone in this. Thanks

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Hi Maureen , welcome to the forum. I'm sorry to hear how you are at present. I have cirrhosis 9yrs now. I am end stage with mild hepatic encephalopathy ; Insomnia, lethargy and whatever else comes along. I do feel the cold but not as much as you do but still more than most I know with family . It's all part and parcel. There's many others here on this forum that are on the transplant list and others post transplant. I am sure one of them can shed more light in to your situation than myself. I am holding my own at present with meds , good diet etc .. but as we all know how quickly things can turn around . Have you spoken to your consultant? Maybe they can help you.. sending my best wishes.. Linda

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Hi Linda, thanks so much for your reply.Sorry I did not reply yesterday, but it was late on when I read your message. Sorry to be dim, but I don't know what 'end stage encephalopathy' is? My Hep Nurse is very good and I can ring her at any time - no cure for the bloody cold though. I've felt the cold and lethargy since last March when I started on my meds to cure my Hep C, should be used to it by now!! Thanks for chatting anyway, I wish you well and hope to talk again

Mo XX

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Cold

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Hi mo , your most welcome. Ok , I have cirrhosisof the liver , I am now what you call at the end stage. There are 4 stages and I am the last .it basically means the liver is very badly scarred and my fibrosis score was 27 which is very high meaning my liver is not in a good way . Hepatic encephalopathy is due to the liver not ridding all of the toxins from the body so the remaining toxins can go to the brain which causes confusion and with me I am very forgetful. The itchy skin is also another side effect. I'm glad you have the support of your nurse 😊. I can relate to the lethargy too mo , I have it myself and it's so bloody annoying that I can't do what I want to do at times .no , there's nothing we can do regards to feeling cold, but I am waiting on further neurology tests due to the tingling and burning I get in my left hand and foot 🤔.. Oh the joys hey ! You take care..speak soon .Linda xx

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Hi Maureen 🙂 I'm new here too as of today. I'm so glad that I read your post as I've just given an outline of what's going on with me and was just saying about how I feel freezing cold for most of the time.

I haven't got a diagnoses yet, just finished the tests and waiting for the results.

You're not alone, I know exactly what you mean, I go to bed some nights actually shivering with cold, even in this warm weather.

What I have found that helps me a little is to not allow yourself to get too cold to start with. As soon as I start feeling "chilly" on go more clothes, because what I was finding was if I let myself get too cold before doing anything, it would take me a long time to then warm up again.

If need be, I go to bed with a cardigan over my pj's and socks, other people around me think I'm mad!.....they're throwing clothes off and I'm adding them on!

Just do whatever makes you warm and comfortable cos that's all that matters hun. 🙂

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If you think of your liver as a boiler or furnace, when the boiler( liver ) is not working to full capacity , the water ( in our case the blood) is not heated to the same degree. The liver has so much blood normally going through it , it alone is responsible for approx 20% of our body heat . Wth cirrhosis you have reduced flow so less internal heating . The hyper thalamus is often not working quite or properly which does not help either. Wrap yourself up . Also keep yourself moving as much as you can , and muscle action. Even tapping your fingers or toes creates heat , as muscle contractions use energy . Remember to eat little and often too.

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My daughter tries to explain all this to me, I think she knows more about my liver than I do!! She's a good help and support to me.

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Feeling Cold

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Hiya, Thanks for getting back to me. Seems to be quite a common side effect. First felt like this last year when I was put on meds to cure my Hep C. It said on the paperwork that you would feel chills!!!! More like bloody hypothermia :-( You would think I would have got used to it by now. Good point about pre-empting the cold before it gets too bad. Just glad I've not had to pay for the gas and electric bills this last year

Hope to chat again

Mo XX

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It's part of liver disease unfortunately. I'm post transplant now and I distinctly remember the day I went to Kings Hospital for a transplant information day. It was September and patients and family were all sat in a small class room, ALL the patients had coats on whilst all other family members were complaining about the heat. The nurse said thats liver disease, its perfectly "normal".

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Congrats on getting your transplant. I'm in for transplant assessment on 7th, 8th and 9th June. Have had a lot of the tests done already. Not holding out much hope as I am now 67

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Don't be negative! Stay positive mo !! I'll be keeping everything crossed for you xxx🤞Linda

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Good luck. And like Millie says, stay positive. Sometimes it doesn't always go smoothly, and I certainly had a couple of hurdles before I got my transplant.

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Best of luck with your tests I'm 67 and the consultant said my age is not a problem so please dont worry about your age GOOD LUCK

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Thanks, just feeling aprehensive x

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Hi maureen I'm going for assessments later this month please keep us update on the format of these assessments etc keep your chin up, love Pete

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I know I have to be able to ride a bike for 7 minutes. That's a bloody laugh, have never been on a bike in my life!!!! Got my daughter to retrieve exercise bike from garage to practise on. Some of the tests I already had done, like ecg and ultrasound of my heart, also chest xray and of course, the inevitable blood tests :-( I'll deffo keep in touch and let you know how it all goes. Take care xx

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I will, Linda xx

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There's always hope maureen and at 67 you've got loads of life to live yet 🙂 Hoping that everything goes nice and smoothly for you. x

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Hi Maureen, I've recently been for transplant assessment and it was said that the liver helps generate body heat and that's why we feel the cold more. I'm always freezing and girls in work are sweating lol. Good luck with your assessment 😊

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you are not alone.... i have had my transplant 3weeks ago but before that i was frozen all the time... when i went for assessment all the people there for it werewrapped up in their coats and the room was 7 0 something. one lady had her hat on all day... its the liver struggling to do all its jobs.... so no it is very common as you get worse symptoms. the good news is that ive felt much warmer since transplant. cheerscazer.

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I am so happy for you cazer!

You'll be doing more singing now! Xxxx

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thanks... made back to choir 3 weeks ago but got tummy issues at present so getting quite a bit of pain... its stopped me going back but hopefully soon... la la la...

best wishes cazer.

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i was asessed at the same time as a lady of 68she had her call 2weeks later and got her transplant... so don't loose heart. xcheers cazer

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Thank you xx

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I was cured of Hep C about 2 years ago leaving my with a diseased liver, ongoing tests for transplant but I also fell the cold due to anaemia, so you're not alone.

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It's so horrible though, especially when other people don't understand and look at you as if you're a bit barmy or something x

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Maureen ignore them and keep yourself warm, all feel the same cold XXXX

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Hi some days I am so tired I get freezing even on a hot day.I have never felt so tired.Having hep c for 30 years then 3 lots of treatment.Its caused some damage.I hope you find out why your so cold xx

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Hello, When I get cold I have a hard time getting warmed back up. My doc said its because I have chronically low body temp. (Hands and feet are the worst) Now I am Just wondering if lower body temp (caused by liver or toxins) could be the reason we are colder than cold?

I also have another issue which produces the opposite effect; "hyper" overactive thyroid,

so when I get warm I overheat, you can imagine the hell I go thru between being too hot and then being too cold. There is a very tiny range of comfort and most days regardless of weather it is hard to find that sweet spot of comfort. I feel like I have a fever if I am only a little below normal because I am so used to being way below on body temp.

I wish they had something for those of us that have broken temperature settings in our bodies.

LMK if you hear of anything that works!

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