Do I have liver disease: have had pins... - British Liver Trust

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Do I have liver disease

sunflower1 profile image
33 Replies

have had pins and needles in my hands and feet for over 3 years now. I thought it might be alcohol related and have been to my Dr's at least 7 times over the past 3 years and had blood tests which all came back ok I also I had an xray to look at my liver, the results came back fine on that as well. The Doctor referred me to a neurologist all results are fine

I am still convinced its my liver, I am a 38 year old female and have drank alot over the past 20 years. I drink approx 3 bottles of wine a week now. but as i said have drank alot more over the past 20 years. I have had about 4 lots of blood tests all of which have come back negative. When i got the results back on the xray which were ok I said to the doctor that I had heard that these tests are not full proof and the only way to know for sure was a liver biospy. The doctor said they would not do that due to the other results being ok . Could I still have liver diesase and these tests be wrong as I have read the only real way of telling is the Biopsy.

My most recent symptoms have been itchy hands and feet and sometimes a sharp pain under my ribs. My doctor has felt my stomach area and liver and could not find a problem. She recommended that I give up drinking for 2 months to see what happened which i did, well my symptoms did ease so she has said my body must have beome sensitive to alcohol. I really am now at a loss. Am thinking of having another break for a few months but want to know how long to stop drinking for to stop these symptoms for good. I would not want to give up for say 4 months and then start drinking again to find if I would have given up for a few months longer it may have "cured" my problem it that makes sense!?

Any suggestions most appreciated thanks.

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sunflower1
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33 Replies
user1 profile image
user1

Hi, this sounds to me like you have been thoroughly investigated by your GP who has repeated the tests on several occasions. When I first started to read this I assumed that you may have peripheral neuropathy which can occur as a consequence of chronic alcohol use. This typically causes pins and needles symptoms. But you have seen a neurologist who said everything is fine. You should be reassured by the blood tests, radiology reports and your GP's examination that you probably do not have liver disease. As you point out you stopped drinking and your symptoms improved. This to me is crux of the situation. You current alcohol use causes you a significant problem and therefore should be the first thing addressed to improve this issue. I suspect that no-one could realistically say you need to give up alcohol for X many months and your symptoms will be 'cured'. I would be recommending that you stop drinking altogether. It will be a case of trial and error if you return to alcohol use following a period of abstinence. It may well be that alcohol will always cause you some pain as it appears that this is the way it has affected you recently. Alcohol is genuinely toxic to our bodies and generates harm to the whole body because it is miscible in water. I am sure you are aware that three bottles of wine a week is in excess of the government recommendations which have been agreed after decades of research and expert consultations. I would also recommend taking vitamin B and thiamine supplements, I suspect your GP & neurologist will also have said this. These help strengthen the fine blood vessels in your body. Degradation of these vessels can cause pins and needles. Hope this helps.

Bigsis profile image
Bigsis

Hi,

Glad your tests results have been good. I'd be taking that as a great chance to tackle something you already know causes you harm before it does do real damage. As User 1 has said, the best bet is giving up alcohol altogether and to see that as a permanent step, not a temporary fix. I stoppped over 18 months ago after worrying myself for years about how much I was drinking and although I had no liver damage I'm surprised how much better I feel over all. My younger brother wasn't so lucky and died last month as a result of cirrhosis of the liver due to alcohol. Its a toxin , not a life enhancing pleasure. There is plenty of support out there to do it and even more on the forums here.

Good luck with your journey.

am3thyst profile image
am3thyst

Alcohol is basically a poison, but you know this. I was diagnosed with Primary Biliary Cirrhosis (which is not alcohol related) in 2008 via blood tests and without the aid of a biopsy, which I am not allowed due to the risk of internal bleeding due to the PBC. Your doctors appear to have carried out every test they can, and trust me, they will not carry out an invasive procedure unless they have to. You have to work out for yourself what is more important to you, your health or alcohol - it really is that simple. Bigsis, I am sorry for your loss my Uncle, was an alcoholic, he did not get cirrhosis of the liver, but does now have alzheimer's due to his drinking, and that is really not pleasant, another side effect of alcohol which is not widely known.

sunflower1 profile image
sunflower1

Thank you all for your responses, much appreciated. As you have said the doctors have done lots of tests and all have come back negative so I just don't really understand why I am having all these sytptoms yet no diagnosis, its very frustrating.

No user1 no one has mentioned itamin B and thiamine supplements but noted thank you.

I will possibly play it by ear and have another few months complete break and see what happens.

Iam sorry that some are you are having a tough time. Fingers crosses for you all health wise. Thank you again for your advicve.

Bolly profile image
Bolly

Sunflower it sounds likely that the alcohol has damaged your liver. 3 bottles of wine a week is too much for a poorly liver to deal with. Women with healthy livers should drink no more than 14 units a WEEK, and iff you drink even 2 bottles of 12% wine over a week, that is 18 units. This is above the upper safe limit for a woman.

Your symptoms would suggest your liver is struggling. In order to 'heal' you liver and get rid of the symptoms you will have to stop drinking altogether. Not cut down, not take a break, but abstain completely.

If you find this too difficult to do on your own you might consider joining a support group.

Lots of luck in the future

sunflower1 profile image
sunflower1

Thanks again for your advice. I do understand that I drink too much and its not good for me but I do enjoy wine and they do say the liver can repair itself. I just don't understand why all the tests have come back negative if there is a problem. My doctor has not told me to give up drinking completely. If she said there is obviously a problem with your liver and you need to stop drinking, that might be different?

Hi Sunflower1, it seems that the best thing might to be to stop drinking as, as you say, this is what elevates the symptoms. Regardless if results are negative if stopping drinking relieves the symptoms then I suggest that is what you do. I also agree that this means stopping for good. Having read this thread I wonder if this link might be of use; freefromaddiction.co.uk/Abo... Gary Topely runs a peer to peer support service for those who want to stop drinking. He is really great.

In terms of the liver repairing itself, it is true it can, but this is limited. If the liver is struggling to cope then it is a sign that it is struggling to repair itself. Stopping drinking will allow your liver to operate to the best of its ability. While the tests might be negative and your doctor hasn't said you need to give up drinking completely I can't help but feel that if you continue drinking you will only progress until your liver is (more) damaged (maybe beyond repair).

There are many different stages to alcohol related liver disease. More information on this can be found here britishlivertrust.org.uk/ho.... But, no matter what stage you are at, if you continue drinking you are risking progressing further along the liver condition ladder. It starts with a build up for fat, from the broken down alcohol, and will progress to inflammation, scarring and a damaged liver. If you stop drinking now, you might be able to lead a completely normal life however if you continue to drink you risking becoming more ill with liver conditions.

I hope this helps. All the best.

sunflower1 profile image
sunflower1 in reply to

Thanks BLTTOM for your response and for the link. The problem is I don't want to give up drinking and I know you have to want to do it. I enjoy my wine at the weekends and on social occasions so that's the problem. I don't think I am addicted but you may disagree. I have wine and spirits in the house and don't have to drink it and don't look longingly at it wishing I could drink it.

I have looked at the livertrust website a huge amount and still can't seem to understand what stage I might be at if all the tests are negative. The last time I had a scan was last December which was clear and the last LFT I had was around June/July which was also clear and as you have probably read I have had numerous doctors appointments with numerous different doctors all of them saying to "cut down" At what stage would it show on any of the tests?

Thanks again for your input it really is appreciated.

in reply to sunflower1

Hi Sunflower1

I have spoken to our patient enquiry officer about this question and she has come back with the following.

Well.....it’s great that the tests results are NAD, but the blood tests alone are not gold standard, so even when the results may all be within the reference range, there could still be some ‘activity’ in the liver which could increase over time, depending on any insult that the liver has to withstand.

Depending on what type of scan was undertaken, again, if there wasn’t any abnormality observed, this is all looking very positive. However, the GP/Consultant must look at the patients medical history, conduct a physical examination and address the symptoms to be able to determine whether the patient requires further tests, medications/treatments, OR just advice and guidance.

Damage to the liver can slowly and gradually ‘build-up’ over time, but the speed can be influenced and exacerbated by other contributory factors, e.g. smoking; poor diet; lack of exercise’ medications or alcohol. Therefore, just because test results are looking fine at the moment; the there is cause for complacency.

-------------------------------------

I hope this helps, please know that the BLT is always here for support and to help in anyway we can. I hope your symptoms ease and that you get to the bottom of what is causing them. Do get back in touch if you have any more questions.

All the best,

Tom

sunflower1 profile image
sunflower1

Thanks for your response.

As mentioned previously, I have been to my doctors lots of times, had lots of LFTs a Ultrasound of my liver area and seen a neurologist, all of which have come back negative. I am not overweight and exercise on a regular basis, I do not smoke. The doctors have felt my stomach and liver area, weighed me, took blood pressure Etc Etc, they have all said that If I did have liver disease "SOMETHING" would have shown up by now on the tests.

I am at a loss on where to go next as there is nothing more I can say to the doctor that I haven't said already but I still have all the symptoms.

Thanks again for your advice.

LiverLad profile image
LiverLad

Your blood tests were they Full LFT and have you been tested for any viral types of Hepatitis C + B.

Cheers!

P/S Cut out the Booze it really isn't worth it your Liver is !!!!!!!!!!!!!!

LiverLad profile image
LiverLad

Oh another Naughty one is Hemmochromatosis, get tested!

LiverLad profile image
LiverLad

Hi Sunflower , Remember I see you quote how good the Liver is at self repair Yes but only for so long then it can't and more so the more damaged caused the harder the repair is oh and scan wise CT is the one you should ask for, Cheers

LiverLad,

sunflower1 profile image
sunflower1

Hi Livrlad,

Mmmmm not sure if they were Full LFT, what's the difference and surely the doc would have done that, not sure if they have tested for Hep B&C either, I will ask on my NEXT visit which of course there will be. Is there a test for Hemmochromatosis? What do you think the next port of call would be, back to doctors again and ask for all of these tests, When I went to see my other doctor about 6 months ago, he asked the question "what do you want me to do now?" Well I don't know, I am NOT a doctor!?!?! Thanks.

Hi Sunflower1

How are things with you?

Happy new year

Tom

sunflower1 profile image
sunflower1 in reply to

Hi Tom,

Thanks for your message, Happy New Year to you too.

I am still getting the same symptoms, I was still drinking over Christmas though.

I went to see the Doctor again on Christmas Eve and wrote a list of ALL my symptoms of which there are MANY! I had another lot of blood tests done including Liver Function all of which are clear but she has at last referred me to a Liver Specilist which I am waiting on the appointment to come through. She did say they might not see me if they don't think its relevant and now my bloods are back clear they might not see me, lets wait and see. I am hoping they will do the Firboscan although I will be trying to make the Liver Trust Roadshow next week but am absolutely terrified of what the results might be. What would happen if it showed up I have major problems do you know?

I am scared! Bet you wish you didn't ask now!

Thanks for your message.

Hi Sunflower1,

What great news that you have been referred! Fantastic. I do hope they see you. Seems like you did the right thing taking a list of all your symptoms with you, so well done!

In regards to our roadshow and bad results; we are fully prepared for this. We will have a fully qualified nurse carrying out the scan and consultant hepatologists available to talk through your results with. If the scan results are cause for concern you will be given a letter to take to your GP encouraging them to carry out further tests or refer you. So do come along as we would love to help you get this all sorted!

Best wishes

sunflower1 profile image
sunflower1 in reply to

Thanks for your message, yes at last I have been referred! Lets just hope I have not done too much damage.

Great, I will be hopefully taking a friend along for some support but will be dreading the outcome. How long does it take to to the Fibroscan and will the results be instant or will they have to go away and look at it and then come back to me? Thanks again and I will let you know how it goes

The fibroscan takes about 5 minutes with the results being instant, which is what makes it so great. There then might be a little wait to speak to a consultant depending on how busy we are. Do let me know how it goes. Please be aware that we are not fibroscanning in Cardiff but will have consultants to talk to.

Dalguise profile image
Dalguise

The clinical test results confirm that you do not have any stage of liver disease. The practical evidence shows that your level of alcohol consumption is causing your symptoms. My simple suggestion would be to lower your alcohol consumption to a level where you become asymptomatic. For peace of mind, monitor your progress with blood tests every two years. In the meantime enjoy your wine. You sound like the perfect candidate to increase the quality and decrease the volume! Good luck.

sunflower1 profile image
sunflower1

Thanks for your input Dalguise!

Another update for you. My most recent LFT was December 24th, all come back ok. I went for the Firbo Scan this week at the Liver Trust road show and that was all ok as well. I have been referred (by my doctor in December) to a Hepatologist the appointment in February.

I still get all the symptoms I mentioned previously and whenever I drink wine,the next day I get pain under my ribs so I am still convinced this MUST mean something????

Not sure what they will say or do at the appointment and not sure whether to show them my Fibro Scan results or not, Don't know how accurate they are, should I just not mention it and hope they do another to make sure?

Any input appreciated thanks!

tevion profile image
tevion

HI I have the very same symptoms as you even down to the severe heartburn. The alcohol will be messing your liver up slowly and surely, but the problems you speak of are side effects of alcohol misuse.

I too drink far more wine a week than recommended. I started just with the pins and needles, but I had a car accident and I thought it was from that. I now also have pain in my elbows on a regular basis as well as the pins and needles. the pins and needles are definitely nerve damage, I too went to see a neurologists and had nerve tests but at the time they said I was fine, but the symptoms continued. There will come a time when your symptoms of pins and needles will not be reversible. I think you sound as though you are in the same position I was a couple of years ago.

I am still trying to stop!!!

The pain you speak of under your ribs is not your liver its probably your stomach. Alcohol affects the acid balance in the stomach and eventually you won't be able to turn the symptoms around you will need to be on medication permanently, You will probably also notice eventually u get pain after eating certain things with fat content and bad heartburn and probably bad breath from the acid.

I would imagine you get sore throats quite low down in your throat almost there all the time? If not yet it will happen as this is the acid in your stomach which rises into your throat (often without you knowing) and burns the soft tissue, it can cause blisters etc..

We both need to stop with the wine!!!

I know all of this because my brother is dying of liver cancer at the moment and he is 61 and I am 51, I am being prescribed the same tablets that he has been on for years for my stomach. he has drank things like bottles of white cider an tennants super and Brandy for years, so I'm in a bit of denial as I try to kid myself that mine is not from the alcohol as I only have 5 bottles of wine a week!!

Re the liver being able to "heal" its self, his specialist says (DR Steven Ryder, Nottingham University) its a myth and a lot of the damage is done silently and with out symptoms, quite often you won't get actual liver symptoms until lots of damage is done.

Alcohol scars the liver and Liver cancer in drinkers is often begins at the site of the scarring, the scarring is sclerosis of the liver.

Do u have any pains in joints or bones?

I'm sorry this is soo long, but I hope it helps?!

tevion profile image
tevion in reply to tevion

Ps forgot to ask, do you also get tummy upsets? Are your stools normal? I know its personal, but I have started having to go to the loo a lot and its to do with the tummy acid i think....

sunflower1 profile image
sunflower1

Hi tevion

Thanks for your post. Have you been diagnosed with liver disease? Most of the docs I have seen have said well pins and needles don't point to liver problems, well that's completely different to what I've read, but they are the experts!? I don't have a sore throat Or heartburn and the pins and needles does seem to have eased up over the past couple of months. The pain under my right ribs is mostly sharp, does seem to come about the day after I have drank. Again the experts say it would be there ALL the time which it is not. Its right under my right ribs.

Sorry to hear about your brother, I take it he has stopped drinking?

I agree, I need to give up the wine but like you, I think I am in denial as the tests have all come back clear and all the experts say 'YOU DO NOT HAVE LIVER DiSEASe!!

I do get bad breath in the mornings yep. For the last few months a have had a bit of tummy trouble, gurgling, pains, discomfort, I just had a pelvic scan and Autora scan which I think are OK. Stools sometimes normal, sometimes not but what do you class as normal? The docs are now saying it might be IBS due to stress?!

Thanks for taking the time to post, much appreciated. Long post not a problem!

Take care.

sunflower1 profile image
sunflower1

You ask of joint/bone pain, I often Get very bad right hip pain,lower back pain and sometimes pain in finger joint, I did tell the hepatologist all these symptoms but he didn't think they were relevant?.

ancientadolescent profile image
ancientadolescent

I have had a liver transplant and I can assure you that,if you need one,you stand no chance of receiving one if you are still drinking. My advice to you is give up drinking for good. I did this, and if you have already stopped for a few months then you should have no real problem in stopping for good. I go out socially and have no problems with others around me taking alcohol. If I can do this so can you if you really want to. Remember itt is your life you a playing with.treat it with respect.

ancientadolescent profile image
ancientadolescent

An xray will not necessarily indicate if you have liver cirrhosis. I had an ultrasound and an mri, these seem to be better tests. I would suggest that you give up drinking alcohol completely as you will stand little chance of receiving a liver transplant if you do not. You say your symptoms have eased when you have had no alcohol,this should tell you what you need to do..

Jgregory profile image
Jgregory

Did you ever get solid feedback on your liver situation

sunflower1 profile image
sunflower1 in reply to Jgregory

Hi j Gregory, sorry for delay.. Didn't get notification that you had posted. No nothing.

Mistypyyy profile image
Mistypyyy

Hi sunflower1,

Just wondering if you have an update on your results. I'm going through the same symptoms right now. I've been a heavy drinker for about 5 years. All my blood work and ultrasound are clear. I try pushing my doctor to see a GI but won't refer me because my tests are clear.

sunflower1 profile image
sunflower1 in reply to Mistypyyy

Hi mistpyyy sorry for delay not been on here on a while. Didn't get any answers from docs, same symptoms 3 years on. Message me if you would like?

mommy1975 profile image
mommy1975

Hi Sunflower1,

I am sure you most likely know your diagnosis by now. I have similar symptoms. I don't drink but yes I have nonalchoholic fatty liver disease. I noticed I feel better when I limit carbs and meat. I feel better when I eat a mostly plant based alkaline diet. Fatty foods make it worst.

My doctor prescribed diet changes and exercise. I am also prediabetic.

gracieb03 profile image
gracieb03

I have been going thru elevated liver enzymes for 3 months and blood work after blood work I had a complete abdominal Ultrasound that said everything was unremarkable and great. I have an appt with a GI/Hepatologist next week. My doctor has taken me off celebrex 1 month ago and my Effexor 3 weeks ago completely and I have experienced horrible side effects and withdrawals. I am in very good shape and I exercise, run and am very active daily. Since he took me off my meds I have been aching all over, especially at night. I had a complete panel of Blood work today Nash FibroSure panel, Mitochondril, Antibody, CK,

Hepatitis A&B, Kiver & kidney Antibodies. I have been worried sick and have went from perfect health to a worrier and aching person. My face has broke out and other things like intense itching at night . My levels were ALT: 181, 185, 185 .. AST 146, 143. 141. I know something is wrong, if my levels are elevated. Can someone please tell me what it sounds like or if you have been thru this. I don't understand why all this if my ultrasound was perfect. Any information would be greatly appreciated

Thank you...Praying it is an autoimmune something and not chirosis... I am 55 years old. I have also lost 10 pounds in the last 6 months but I think that is due to exercise. I run 3 miles at least 4X a week and do Bodypump, kickbox, and P 90X 4 nights a week. I would love any information-good or bad..I am tired off worrying myself sick and being in this pain. I think the pain is from coming off arthritis meds Celebrex. I have been making it thru exercise with a struggle but the pain gets so much worse at night Any advice Thanks so much!!!

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