Does anyone have problems with their liver?

[KirstyK]

Hi all, had blood test done on Tuesday and gp phoned today to say the results have shown very high and abnormal liver enzymes & antibodies so going for ultea sound and more tests on my liver. Just wondering if anyone else has problems with their liver?

[Ginsing]

Hi Kirsty

I have NASH basically a posh term for a fatty liver . There is a section related to livers if you go to the communities button you will find it Its is called British Liver Trust. It may help you.

xgins

[KirstyK]

Hi Gins, thank you so much! It was a hard day yesterday, finding out something else has decided to go wrong lol but glad im not alone. I will have a look at the stuff on liver, thanks again. Big gentle hugs x

[Fibrofoggiest]

Hi Kirsty, I am very lucky and don't have liver problems, but I just wanted to say I hope the tests are ok and that you get good treatment. What a nasty shock for you.

Foggy x

[KirstyK in reply to Fibrofoggiest]

Hi Foggy, thank you for your lovely message, such kind words. Big gentle hugs x

[Maladjusted]

Have also had NASH for around 7 years. Doc was asking for some time if I drink?? Despite my telling him no, I could see he didn't believe me, but never explained his reasons for asking. Later I was sent for the sound tests, which showed NASH. Nothing much has been explained about it, and I don't have any treatment for it.

Hope your tests show nothing more serious.

Em x

[KirstyK in reply to Maladjusted]

Hi Em, thank you for your message. It drives me nuts that doctors wont believe what we say, when they "think" they know otherwise. Do you have any symptoms of NASH?

Gentle hugs

Kirsty x

[Maladjusted in reply to KirstyK]

Hi Kirsty

Yes I do have a few of the symptoms, which are:- increased weight gain around the abdomen, with difficulty losing it, despite dieting. bloating, digestive problems, including intolerance to certain foods. excessive sweating, itchy skin, and occasional tenderness around the liver area. You can get a lot of information & help from liverdoctor.com.

There is even a recommended diet to reverse it, but there's no way I could stick to it - especially the raw vegetable juices and 2 salads a day!!.

Em x

[KirstyK in reply to Maladjusted]

Hi Em, you have just described me down to a T!! That's exactly what symptoms I have. Are you on any treatment for it? Ki x

[Maladjusted in reply to KirstyK]

No treatments, as my doctors are all idiots

At least your doctors are arranging some tests for you. I just had the Ultrasound years ago, with no follow up.

Hope you have better luck

Em x

[KirstyK in reply to Maladjusted]

Aw no Em, there's nothing worse than dealing with stupid doctors. I can totally sympathise with you, I have had plenty of stupid doctors to deal with including the consultant that told me the abnormal liver test result was a false result and now a year on my new gp has found my liver decided to join the rest of me that's fallen apart haha. Very big gentle hugs, you have made me feel so much better, can't thank you enough xx

[Maladjusted in reply to KirstyK]

hi Kirsty

I am convinced that there must be many villages around here missing their idiots - they are all resident at my surgery, hee hee.

By this stage I don't think there is any part of me that hasn't dropped to bits.

That's how I got my Fibro diagnosis, I downloaded a picture of a body from Google, and then put it into paint shop and put arrows to every part of me that had a problem, labelled the arrows then took it to my doc at the time (very good but left after 10 months) I asked her if she had any idea what was going on, and she sent me to be tested for Fibro. Should have asked her about the fatty liver before she left, but never thought about it..

I'm glad I've made you feel better, there is nothing more scary than worrying about your health. Docs give you labels, but few explanations to put your mind at rest.

Good luck with your tests, and hope they find nothing serious

Em x

[she33]

i have a fatty liver also my dr also thought it was through drink

[KirstyK in reply to she33]

Hi she, thanks for your message, do you have any symptoms?

Gentle hugs

Kirsty x

[cowren]

Hi Kirsty I have a liver condition called primary biliary cirrhosis and fibro symptoms not diagnosed health unlocked have a website for this also check it out it an autoimmune liver disease some times fibro is linked if they are doing scan and tests that's good I waited over 7 rs for my diagnosis let me know how you get on it all sounds scary but be positive I know easier said than done sending you a hug xx

[KirstyK in reply to cowren]

Hi cowren, thank you for your reply sorry it has taken me so long to get back to you, not had a good day. Thanks so much will definitely have a look at that website. Do you get any treatment? I kept getting told the liver results were false because being only 22 meant I was too young and didn't fit their criteria. Will definitely let you know how I get on. Xx

[Glenys]

Do you know, I have been to my GP for the umpteeth time wanting a liver scan to no avail! . I had an ultrasound done 6 years ago, originally for ovaries, but the scan man went over my liver and said I showed signs of a fatty liver, and a cyst on the ol' ovary!

When I went for the follow up, but GP made me go for ovaries only so had to have a scan up inside (eugh!) but it didn't show the liver of course - but the cyst had gone.

My mum died of Non alcoholoc liver desease from PBC aged only 56, so I had the AMA test after asking and pleading for it for around 3 years, which came back negative. I wasn't convinced and even contacted the PBC society who told me about AMA negative PBC. I am aware that the symptoms of liver desease are very similar to PBC, and I often think back and realise that I am her "Mini Me" when it comes to our medical history.

Seeing that my mum was only "diagnosed" with liver disease at the post mortem, after a week in hospital investigating her out, and her dying at the end of that week in GICU with no clue as to what she had, I felt maybe she had also had AMA negative PBC.

I finally went to the doc and told him about it, but he still wouldn't refer me (he was a new doc, as well, so had no prejudices about me). I had also had a menopause test after no periods for 8 months, and came out negative, so voiced my concerns about Hyperprolactinaemia which stops your periods and is related to liver disease, and also my concerns about my VERY low vitamin D levels, which (guess what) are also related to a dodgy liver.

I got back a load of tosh about most people being VitD deficient (which may be true, but when I know I have been doing the required things suggested to keep my levels up, to no avail, I don't need to be told), and that I would have to wait another 3 months to know for certain whether I had got through the menopause, so, hey! why don't you loose some wight in that time, and if you are a good girl we might give you a scan on your ovaries instead to see if it they are polycystic. TOSH! (Can you tell I am pigged off??)

Does anyone know how much it costs to PAY for a liver biopsy, at all, please?

[KirstyK in reply to Glenys]

Hi Glenys, oh dear you really have been through hell!! The way you have been treated is disgusting. Can i be really daft and ask what PBC stands for? It amazes me how stupid doctors are! It seems that if we don't meet all the criteria of their ticky box check list then we can't have it. I was admitted to hospital 2 years ago as an emergency after NHS 24 said i had heart burn, the gp looked at the NHS 24 report and confirmed that's what i had, 3 days later i was doubled over on the floor in gp surgery to discover my gall bladder had decided to cause hell admitted to hospital but because it had taken so long to be diagnosed whrn they finally operated they couldn't take my gall bladder out or it would have risked my life. All because i didn't meet NHS 24 ticky box criteria and yet again I'm back in the same situation im "too young" to have problems with my liver so for the past year, they just kept saying it was a false result but finally now my gp is in major panic over my results. Sorry for my moan!!

I will have a look for a website, i have forgotten exactly what it is but they are consultants than you(any one) can contact and they provide a second opinion and can arrange for you to be seen by top consultants at top hospitals or tell your gp what to do. I will get back to you when i find it. Big hugs xx

[Glenys in reply to KirstyK]

Thanks Kirsty, It would be great if you could find the site - I have been tempted to pay myself for a biopsy, but the major hurdle would be getting a good consultant to do it - fortunately I work at a hospital, so might find out there if they can recommend someone, but to actually have a consultant give an opinion may help me to get through via the GP in the end.

PBC is Primary Biliary Cirrhosis - sort of comes along somewhere between fatty liver (what I was told I had at the first scan) and full blown cirrhosis (what mum finally died from).

Looks like you have been through Crap yourself. It just goes to show the system is useless.

Thanx XG

[Glenys]

Forgot to add that the chap from the PBC foundation said I really should be asking for further investigations dispite the negative PBC result.

[KirstyK in reply to Glenys]

I knew I had posted it on here few months ago, I just had to find it!

In the Daily Mail on Tuesday 11 June 2013 there was an article about an organisation who is available for everyone to access and they give a second opinion on diagnosis, treatment, and further action. It is totally free and they often put you in contact with consultants that are specialist in the required area.

The organisation is called The Patient Care Trust and you can find it on search engines.

Hope they can help you, definitely worth a try.

Kirsty x

[KirstyK in reply to KirstyK]

hdapatientcaretrust.com/

Just checked to make sure website still works, this is the website, it's name has slightly changed its now has patient care trust. Really hope they can help you

Kirsty :)x

[Glenys in reply to KirstyK]

Thanks

Just off to bed now but will check the link before I go

G

[Glenys in reply to KirstyK]

Hi Kirsty

I have looked up the page - it looks brilliant - just what I may need - I will email them asap ThanX again!

[KirstyK]

Hi Glenys, your very welcome hope they can be some help. Please let me know how you get on x

[Glenys in reply to KirstyK]

Hi Kirsty

I got a reply back from them a few days ago. They said I had Post Traumatic Stress disorder and needed CBT, then proceeded (in very bad English) to tell me about people who have wished death upon themselves and it happened - on the day they expected to die, by the way, - and people who cured their deadly disease by the power of their minds.......WTF!!!!! The person who runs the site seems OK enough, and when he phoned me up to talk about it first, he actually said to me "don't shoot the messenger", so not sure if he quite understood the reply from his "well respected body of consultants in London". The very long reply is below. I include it because it is so wierd to hear medical professionals talking like this: Take note "Lack of moral fibre" - whoopee!

2.?She should seriously consider having some really good CBT about

> the worry of her mother (primary biliary cirrhosis). She has got to be

> able to live with it. It is another form of PTSD. This is an important

> new medical approach developed over the last 60 years. It is similar

> to the diagnosis of shell shock in WW1, ?lack of moral fibre? in WW2

> and now it is PTSD. People have experiences and then these pray on

> their minds and can even kill them. Should they die it might even be

> on the same day that their mother or father died. Glenys needs to be

> able to address this and needs to be able to face this and not run

> away from it. That?s the whole thing about medicine. We have to now face things and not run away from them.

>

>

> Maybe the need for counselling is the way out of this. She has got to

> save herself not us. We are giving her sound advice whether she takes it or not.

> We are just a signpost, we are not going to cure anybody, they have to

> do it for themselves.

> It will not go away unless it is addressed.

>

> We are going to give her another avenue. Franca gave the example of a

> man in New York with cancer of the colon, lung and other metastasis.

> He employed two counsellors, four days a week and was cured as a

> result of positive thinking. We have got to find a way of steering

> patients down that route without feeling insulted or angry. MB had a

> case of lymphoma, which he said to the patient would go and it did.

> TH?s wife who had trochanteric bursitis in the groin found that this

> disappeared after Trevor told her it was not as the result of her hip

> and she said ?I just wanted to hear from you that it was not my hip?.

>

> We are dealing with fear. Patients come in with fear, our job is to

> remove that fear, unless we touch base with that basic fact, we are

> not going to get anywhere?.

It doesn't make sense to hubby either. I have looked up PTSD and the only thing that rung true out of the five main criteria was that I have witnessed a death, the other 4 criteria didn't apply.

The daily mail might be interested in this, after posting a review on it.

Do you know anyone who has used the service Kirsty, as it would be interesting to see their results !

Don't worry, I am not upset with you or anyone for recommending the society at all, as it seemed like a legit lifeline, and probably is for most people. You know what peoples reactions to Fibromyalgia can be, and when I asked the doctor at the other end of the email if he could ask his board in ondon what medical discipline THEY thought it fell into - Psychological, Rheumatoid, Neurological, physiological or auto immune, he got back within the hour with

"In response to your extremely valid question, consultants in the fields of psychology, rheumatology, neurology and auto immune problems all tend to be involved with the treatment/management of fibromyalgia"...Good answer but Not the answer to the question.

I have had CBT before 8 years ago, with a reference to the clinic by the GP at the time saying I was hypochondial about my symptoms, so I know the GP would just THROW me at it this time!

But thanks for introducing me to the website anyhow, as it did seem like a good idea and I don't think anyone would have expected this result

XGlenys

[Glenys]

The above post hasn't come up on my profile, so maybe no one has seen it? I had a look on the web and found very little else about the HDA other than the website itself, except for the pernicious Anemia society chat room, where someone had also tried to get a second opinion, and failed.

Has anyone on here tried it and got a good result?