Can anyone tell me about milk thistle. Never heard of it until I read it on this site.

[Annac]

[Hidden]

Hello.

Milk thistle is apparently a good liver aid and cleanser. I stumbled across it 2 years ago when trying to find out more about the liver and PBC.

I did find out that it is apparently used in emergency rooms if a patient has ingested a certain poisonous mushroom as it alleviates any liver damage.

I started experimenting with it myself April last yr., took for a month prior to a blood repeat due to having 2 prior notso good ones. I had good results and then stopped taking it but after another notso good blood result Oct 2012 I restarted Dec 2012 and my most recent blood results (Feb 2013) were pretty outstanding. Not gone down to normal yet after being on urso for 28mths but they are notso bad either now. I took the milk thistle as one capsule at lunchtime as I take an urso with breakfast and an urso with tea.

I think myself in the last few months I have started to rapidly feel even more alive than I was prior to end last year and all I can think of is that the milk thistle has helped alongside the urso. I shall find out when I next have blood repeats if this is the case but judging how I feel at present I'd say that the improvement has moved on from last bloods.

I did take the milk thistle of my own accord, my GP doesn't even know but I would say so at some point if he said the right words when I see him, of which he hasn't as yet.

I can't say if you should just take milk thistle, that's for you to decide and speak with your doctor if you want additional input. I'm not that trusting of doctors at all due to past experience and I do know at the end of the day they can and do make mistakes.

Hoped this has helped.

[Annac in reply to Hidden]

Hiya, Thank you so much for that information. Very interesting that you performed your own before and after Investigation. My GP practice doesn't seem to know much if anything about PBC but I am seeing consultant for my 6 months check next week and will ask if he knows - may get back to you with his response.

[Hidden in reply to Annac]

Hello again.

I think in my case regards milk thistle, in a way I wasn't really taking a big risk in taking it to see. Can't say I had any side-effects from it and I have read from the source I have (Reader's Digest Natural Healthcare book) that milk thistle is actually thought to be the safest herbal supplement.

My own GP is what I'd say absolutely useless. He doesn't seem that interested and when I asked at the practice if there were any other patients with PBC registered there with the view to perhaps seeing the same GP that person/persons sees I got the patient confidentiality book thrown at me! I did say I wasn't interested in knowing more than if there was anyone there but when I said why it never really got anywhere so I don't think there might be anyone else registered.

Having enough of this GP surgery, I have registered elsewhere so I might just get further, you never know.....

I know some doctors and GPs do not believe in alternative medicines and won't suggest or advise anything except conventional drugs. I expect you might have to just go on their opinion. Unfortunately the GP I was registered under and who got my blood work and who I seem to have seem pretty much since I was diagnosed doesn't seem to be a doctor who will take much notice of the patient and of one who seems to be 'I know best'.

[Hidden]

I would like to add that my Gastroenterologist is the one who prescribed Milk Thistle to me. I have been taking 175mg three times a day along with two Urso a day since I was diagnosed 10 months ago. My blood results have been steadily improving. My GP is not the one who orders my meds, but is the one who manages the blood work done including requests from the Gastro Doctor. Regards, Judi

[Magnolia]

I have taken milk thistle before, and my GI dr. told me it wouldn't hurt me.

Magnolia

[Hidden]

I think healthangel and Magnolia are State side? I am finding out more and more that it seems that we have a few differences between our medical system as in England and America.

It was the hospital consultant who prescribed the urso and informed the GP of the PBC and how to take urso. It was the GP who asked me in to give me the diagnose and then write the scripts which I now get on repeat. Unless one is an in-patient we tend to receive a lot of results and also have the GPs write up the scripts if you see a hospital doctor via the out-patients dept.

Although the bloods I have are at the request of the hospital doctor once I was discharged back to the GP at my request he informed the GP with regards to repeat bloods. The GP obliges but if there is a problem with the results they can adjust. My GP asked me back in 3 months mid 2012 for repeats due to 2 prior LFTs that showed a slight climb each time. All fine at the 3 months mark I returned in a further 3 months for the next.

[Annac in reply to Hidden]

morning. I just wrote a lengthy reply but it seems to have disappeared - did you receive it.

[Hidden in reply to Annac]

Unfortunately there's no lengthy reply on here. I occasionally type mine on a computer stick-it note and then copy and paste my reply, that way I find I can't lose it as it has happened to me previously.

[Annac in reply to Hidden]

Hi again. I was saying that I had begun to realise that the communications were coming from different countries. I am based North London/Hertfordshire. My GP practice is not really helpful they don't seem to know about PBC or really want to. I am learning I have to take responsibility for anything I want. I am getting Urso through them and have to fight the Receptionist gauntlet to get bloods taken and results in time for my hospital appt.

I had a big 'blip' last year following a cocktail of antibiotics and painkillers for a tooth problem I had whilst abroad. Came back and ended up in hospital jaundiced and biliirubins through the roof.

So trying to say to everyone be aware if you have to take antibiotics, and check the painkillers, Codiene is definite No No for me I get very sick.

I don't want this to sound whingie - Been diagnosed for 6/7 years and I am very positive generally about "My PBC" just carry on - recently experiencing the itching - new for me - so the milk thistle sounds promising. It's great to have chats with people who are experiencing what its all about.

Thank you all for responding. Annac

[MickeyMouse in reply to Annac]

Hello Annac. I tried milk thistle 6/7 years ago and it did nothing to my blood results. I am seeing a different consultant now so I think I will ask him about trying it again. I also had a big 'blip' last year after having antibiotics and was in hospital jaundiced and bilirubin really high.

Take care, Michelle

[Annac in reply to MickeyMouse]

Thank you for that reply. The consultants are a little reluctant to 'blame' the antibiotics but are going along that route. The concern is what happens when I next need antibiotics - same with you I guess? I saw consultant last week and he didn't know about milk thistle - said might be side effects - it was up to me to try!!! Ah well they can't know it all. However cos the itch has become a recent thing he has upped the urso to 5 a day from 3 a day. and ordered loads more tests ultra sound , endoscope, more bloods.

How long have you been diagnosed? sounds about same as me.

Annac

[MickeyMouse in reply to Annac]

I have been diagnosed for nearly 8 yrs. yes, hopefully we wont need antibiotics! I have the flu and pneumonia jab now as this is the reason I needed the amoxicilin. The consultant did query an overlap syndrome for the jaundice so they had already started me on steroids before they got my blood results for the day before which showed the billirubin level coming down on its own. So the only other reason was the antibiotics and the time scale was right.

Michelle

[Oidra]

After hearing about milk thistle on this site I asked my consultant for his opinion a couple of weeks ago. His reply was that it hadn`t been proved that it did any good. Again a different opinion from a different consultant.

[Lindilou]

Hello Annac, I have tried a number of things to get my bloods down over the last year and nothing seemed to make a difference. My consultant prescribed steroids as he suspected AIH overlap syndrome, I did not respond and was referred to the Royal Free in London. At the same time of my referral i started to take Milk Thistle after reading the comments on this site.

After 6 weeks my results had stayed the same, next visit they had begun to come down and the hospital confirmed that I have PBC and not AIH. My last visit they were at the lowest they have been since being diagnosed. Next visit is in May and I plan to get a print out of bloods just so i can study the numbers.

Personally I think its made a difference for me, but everyones different and would run it by your consultant first, I did tell my consultants and one asked where i had heard about it (I gave hime details of this site). The other consultant told me to save my money!

x

[Annac in reply to Lindilou]

Hi Lindylou, Thank you for that, I am seeing my consultant next week and will certainly ask. It is amazing the differences in opinion from the professionals. I suspect it depends on their knowledge and experiences. I intend to see what my bloods show this time and then maybe do my own experiments - like Peridot.

I note your location which is not far from me.

[Lindilou in reply to Annac]

Its well worth mentioning to your consultant and keep an eye on those bloods :-), I just take one capsule twice a day along with my Urso (1000mg a day).Good luck

Re location I cant tell on the map lol but looks close i'm in Harlow

x

[Annac in reply to Lindilou]

I'm in Cuffley, Herts.

Is that 1000mg of milk thistle or Urso.

I take 3 Urso, 250mg each.

x

[Lindilou in reply to Annac]

Cuffly is not far at all

I take 4 urso, 250mg each total 1000mg and 2 milk thistle, 175mg each

x

[Annac in reply to Lindilou]

thank you. isn't pill taking the pits .

[Lindilou in reply to Annac]

Lol i know i have trouble remembering to take them, got better now x

[Annac in reply to Lindilou]

Hi Lindylou, I have been to consultant and he hadn't heard of milk thistle.! said there might be side effects - up to me if I want to try it. However he has upped my urso from 3 a day to 5 a day, ordered more tests because the bilirubin count is not much higher than my usual and he says that is what causes the itch. A bit puzzling. So I think I will hold off the milk thistle until the tests and urso have had a chance. don't want to confuse my brain.!!

Hope you OK. Annac

[Lindilou in reply to Annac]

HI Annac,

I agree one thing at a time, monitor the effects of the increased Urso first, fingers crossed you wont need the Milk Thistle (just another one to remember). Im lucky as I dont suffer with the itch as others do, just some evenings after a bath or in bed i could have a good old scratch but it passes.

Best of luck x

[SuziS in reply to Annac]

I take milk thistle in liquid form

[judyt]

I notice that most of you are taking Urso but mention only taking one capsule either once or twice a day. My PBC doctor is a Liver Specialist who is on the liver transplant team at our local city hospital so I am inclined to believe everything she tells me!! If she doesn't know who does?? As well she was trained in the UK so she MUST be good don't you think??

Seriously, I am very pleased that my GP referred me to her because I know what it can be like if you just have to take what you are given in the Hospital system. I live in NZ which has a similar system to UK - historically based on the same theory - but we also have an optional private insurance scheme which fortunately my husband and I joined when we were first married and I am still getting subsidised care outside the 'system'.

Anyway, what I meant to be talking about was the amount of Urso one takes. My Doc says it is based on your body weight and because I weigh 60kg I take 4 capsules a day, 2 in the morning and 2 in the evening. Perhaps the dosage in other countries is different but the capsules I take are quite large and I wouldn't like to be trying to swallow anything bigger.

I also have all the info on Milk Thistle, my GP printed it out from google for me, and I will ask her (Liver Doc) about it in May when I see her again. I suspect she will say to try it.

[TracyLou]

My consultant said there was no concreate proof that Milk Thistle works. All herbal remedies were a big no no for liver problems where he was concerned.

[Tumbleweed41 in reply to TracyLou]

Obviously he doesn't have an open mind - "don't make waves" mind set. - Most herbals are better than any chemical/drug. Don't get me wrong - I'm not saying "all herbals".

Milk Thistle has worked for me for nearly 4 years now and I am now completely off of the Urso. I take 6,000mg/day > That's 3 - 1,000mg capsules twice a day. I increased my MT as I decreased my Urso. I do have an appointment with my Gastroenterologist (who said that I could stop taking the Urso) the end of June but hope to have a lab done the end of next week.

FYI for the "newbies" - I do have the AIH overlap and was diagnosed in Aug. 2007.