GS and Hyperlipidaemia/Hypertension

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Hi, my husband has just had bloods done has an islolated raised bilirubin.

We think he may have had LFTs done in the past, but when we lived in the USA and don't have results, so we don't know if this is new.

He's 45 and I've known him for 15 years and he's always had high/borderline high blood pressure but no one has ever been keen to start meds as his 10 yr cardiovascular risk was relatively low.

For the last 6 years he's also had borderline high cholesterol and in the USA they started him on statins , but he got awful muscle pains, so stopped taking them.

He's not overweight and doesn't smoke and no diabetes. I'm wondering if anyone knows if there's a connection between GS and high BP/cHOLESTEROL. I read that GS can protect against CV disease, so although I realise that choletsrol is connected with the liver, assumed that a low cholesterol was more likely.

He does have the GS symptoms that many describe, ie intolerance to dehydration and aerobic exercise, headaches, tiredness etc. He's 9 years younger than me but gets more tired more easily than I do and needs more sleep.

Since he's been diagnosed with Gilberts he's started taking Milk Thistle about 5 days ago and it's given him galloping diarrhoea and flatulence.

He stopped taking the MT for a day and the symtoms stopped , but as sson as he's started taking it again he's got dreadful diarrhoea again. I I know some people call frequent bowel movwments dirrhoea, but I'm an ex nurse and he's describing real diarrhoea to me ie water, with the odd formed stool ( sorry, I know, too much info!)  5-6 times in 24 hrs, worse after he eats. According to what i've read, MT can have this effect, but I understood that it was fairly rare and not severe.

Any advice appreciated, especially if people have done any extended research. Thank you.

 

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  • Posted

    is it just me or are other people having problem with this site causing computer to hang and getting message that there's an unrepsonsive script? Been happening to me for the last 5 days or so. Wondering if it's one of the adverts.

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  • Posted

    Hello

    I've had GS for 30 years.  I don't have high blood pressure, but do have higher than normal cholesterol, yet I don't eat foods high in cholesterol. 

    If I was your husband and the milk thistle was having that affect on me, I wouldn't take it.  I know that they say having GS can lower your chance of cardiovascular risk due to the excess of billirubin in the system, however, I was diagnosed with Atrial Fibrilliation six years ago, so my high billirubin levels haven't helped me.

    Feeling tired is a symptom of GS and it's best for your husband to not wear himself out too much.  He will probably notice after he has a virus or an operation/procedure that his body will take longer than pre-GS or other people to recover; this is due to the effect of the liver not functioning as well due to the GS. 

    At times, I just wake up and its exhausting having a shower. So, I can't do daily tasks and even driving a car is exhausting, so it's not a good idea to drive when your billirubin level is high.  It feels like walking through snow or up a steep sandhill, but there isn't anything we can do but to rest during that time and hope our billirubin level returns to somewhat normal so we can get on with our daily lives.  Obviously we can't monitor our own liver function tests, but we know when our level is high due to extreme tiredness or the whites of the eyes going a tinge yellow. 

    Avoid drinking alcohol if he can as this further has adverse affect on the liver.

    I don't like taking medications as I feel these don't really help our system, just make another part of us have problems.  A bit like the old tv repair men our parents used to have, they used to come to your house and fix one thing, but loosen a tube so they had to come back again a few weeks later and charge you fees again. 

    GS is a pain, but he will get used to living with it; just don't have him wear himself out and rest if he feels his billirubin level is on the rise.  There's no medication for us and it's a nuisance when I think of all the time during the year that I'm in zombie mode with my GS and have all these chores that I would like to do but alas can't.  Probably the only thing that helps me is some multivitamins by Centrium or Swiss.

    All the best for your husband.

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    • Posted

      Thanks Andree,

      I had him back and forth to the Docs for years as I could never understand why he was so tired all the time. They diagnosed him with very mild sleep apnoea after sleep studies because he says he never feels refreshed when he wakes up. The CPAP machine didn't make the bindest bit of difference and kept me awake more than his noisy breathing! He's always suffered from headaches and says he feels like it's his sinuses, but all those investigations are negative too. We eat a relatively good diet ( no red meat) with lots of veg/salads beans and pulses and  he drinks very little alcohol now but about 10 glasses of water a day as he's always thirsty and gets constipated if he doesn't keep up with his fluids. You're correct about sugery recovery time. When he had a General anaesthetic it took him ages to recover. No doubt a lot of the drugs and gases are meatabolised via the liver. Got the worst hangovers when he did drink alcohol. He's been in the loo now for 20 mins and heard the loo flush and him washing hands and the loo flushing again. Poor soul. No more milk thistle me thinks.

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    • Posted

      Yes hide the milk thistle; you're poor husband.  Going back and forth to the toilet is exhausting.  You are both wise to not drink much alcohol too, saving your liver.

      You will find GP's don't understand GS and if they think they do, they will just say that it doesn't have any affect on ones life.  How wrong are they? It does affect ones life.  My gastroenteroligist suggested I have full liver function tests 6 monthly, but that only gives us the level taken at that time, not necessarily at it's highest peak when are billirubin level is high.  Good that you both don't eat meat, I don't either.

      I mean I can go all day digging and pulling weeds in the garden or painting outside the house and my husband who is very fit has trouble keeping up with me, but other days I just wake up feeling so exhausted and showering or getting breakfast is exhausting.

      It's a pain in the ass, but I would just have your husband take some multivitamins so as to give him a little extra boost at times, but not ones like berocca which I think are too forced. 

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    • Posted

      We take B complex vits and D3, as we must be deficient living where we live. My face is the only part of my body that sees the sun when we rarely have it! He'll be needing some "angry bacteria" as he calls them  after all that toiletting! Seems to have settled now anyway. GPs are dinosaurs.  Nurse Practiitoners could do a far better job for a damn site  less money. I've given up with ours. Maybe when I've lost another stone and my anaemia and white cell count etc are properly low they might take notice, but doubt it.

       

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