Does anyone else suffer from hot flushes?

Started these about 18 years ago and thought it was the menopause (about 40 at the time). Been on and off HRT since then - told I have to keep off it by GP but they are back with a vengeance. Wondered if the PBC is a contributory factor - liver affects hormones so would this have an effect. With the tiredness of the PBC and waking up throughout the night with hot flushes - thankfully do not suffer too bad with the itching - have trouble staying awake during the day! Anyone else in a similar situation? Saw consultant today he doesn't seem to think there is a connection but as we all know - they do not know everything!!

12 Replies

  • Hi Gioielli, yes I too suffer from hot flushes. I am on hormone replacement therapy because my doc thought they were caused by the menopause. Although its not so bad now I still get them. The consultant says that this proves its the PBC and they would have put me on HRT to try and decrease the symptoms. Funnily enough I dont suffer too much with the itch either. The problem is that the symptoms of PBC cross over with symptoms of other illnesses and its sometimes trial and error to find out if it is the PBC. I bought cooling pillows and these are great. I also changed my matress from memory foam, which was too warm back to a sprung mattress. Good luck. :-)

  • Hi Gioielli, I have suffered from hot flushes for 15 years and was on HRT for 10 years on and off and they did help a lot but the doctor refuses to give me HRT now due to the health risks. I am now aged 64 and the hot flushes have eased but not disappeared. I wear T-shirts all year round (even in this very cold weather) and they do help and I always wear cotton short sleeved sleepwear for the night sweats. I have never had any itching. I do believe there is a connection between PBC and hormones due to the diagnoses of my PBC and the terrible hot flushes. I don't know your age but things will get better. Keep well and cool.

  • Where did you buy your cooling pillows? X

  • My theory for feeling hot a lot of the time could be due to liver inflammation. If one thinks about it, if you were to bang/injure yourself to cause slight swelling (ie twisted ankle) then you do feel a heat from it due to this inflammation. Maybe that is it.

    I don't personally suffer hot flushes (I've not yet hit menopause, I'm 48 and diagnosed PBC since Dec 2010) but I do tend to really feel any form of heat especially in winter months when we go from varying temperatures. I do get the itch night-time and I tend to find I start to feel overheated in bed most of the time despite having just a thin summer duvet on the bed and no central heating in the house. My husband often states he doesn't need a radiator as he has his own personal one that breaks down at night as I find with the itch bodily comfort is right down on my list!

  • Snap. !!! The snow is falling and the wind is blowing, but the windows are open wide. My consultant, who is marvellous, says that it is not a recognised symptom, but that it could be a symptom, just the same.

  • I suffer from flushes, during the day, and thankfully don't have the itch. I was diagnosed with AIH/PBC overlap syndrome at the same time as being told I was menopausal (summer 2011). I will be 48 on Friday. However, I do get disturbed sleep in the night with agitated legs, which can cause body temperature to rise. Difficult to tell what condition causes what symptoms. Unfortunately we all have to deal with what we are dealt in the best way we can. It's great to read other people's way of coping. The cooling pillows sound like a great idea for my legs, where did you buy them June9961? Take care. X

  • I have very bad hot flushes since just before I was diagnosed, the bed was ending up like a swimming pool and I still have them now but not quite as bad, HRT does not seem to work very well now. My GP took me off them but a rhumatologist re prescribed them so I got them back. I don't think the PBC is the reason for GP's stopping them as my GP has been trying to stop me having them before I was diagnosed with PBC, they just don't like you being on them. I hope when their wives start having flushes they will then realise, in fact I wish some of the GP's got them. I had a complete hystorectomy when I was 40 and am now 60. but I think the PBC is now the cause of my drastic sweats. the sweats also dry out my skin.

  • I am 25 and have suffered from hot flushes for about six months, not daily or anything but do get them at least two or three times a week. I have been checked that I definitely don't have menopause!

  • I have suffered for many years with night sweats which usually occur just after I have had a wee or have just woken up. My legs feel as if I have scalded them they are so hot also as if they have thousand of pins being suck in them. I too have to throw the light duvet off and also have to have the bedroom window open.

    I have told the gynecologist, cardiologist. medical consultant and now the rheumatologist and low and behold he is actually listening and trying to sort out what is causing it.

    He is testing me for sarcoidosis as he feels that I have that as well as PBC, SS, and ME

    I have thought about changing the matress as mine feels as if I am lying on a heat pad.

    Don't want to seem unkind but it is good to know that other people have these awful symptoms besides me.

    Best Wishes to you all

  • I've suffered hot flushes since 2002 and always assumed it was down to menopause until several months ago my GP wanted me to try HRT patches. After three months there was no improvement whatsoever so she told me to come off them. I wake every two hours with a hot flush and have to get out of bed to cool down. Also the soles of my feet feel like they're on fire and go bright red. My feet alternate between freezing cold - can't get them to heat up for ages then burning hot. My consultant says its nothing to do with PBC though.

  • Hi, i bought the pillows from amazon. I think they are called chillows but are quite expensive. My friend surfed the net and got cheaper ones. :-))

  • Thank you everyone for your answers. It is good to know I am not the only one who suffers with the hot flushes. There is something else which started about the same time but is a bit sensitive. I also suffer from severe itching around my bum. Have seen doctor about this and assured me there were no piles but suggested no reason for it. anyone else?

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