Symptoms but no diagnosis. Frustrating... - British Liver Trust

British Liver Trust

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Symptoms but no diagnosis. Frustrating. I've tried everything and would appreciate any kind of advice. Please note this is a very long post.

Wantobehealthy profile image
13 Replies

I started to feel discomfort on the right side below my ribs about a year and a half ago. It wasn't pain as such but more of a discomfort that one should not feel daily. I was drinking heavily at the time; beer, whiskey, tequila. This discomfort has now become chronic that would last for a few hours daily. I was also smoking a packet of cigarettes a day and at least two or three joints as well. I have been doing this on and off since I was 14 and am now 56 years old.

In my early forties, I went to rehab as I was really bad and the doctor told me then that I had liver damage. Of course, I stopped and this lasted for 7 years with a few relapses in between before I fell off the wagon completely and began my bad habits again. I realized that I am an alcoholic and addict.

My age now counted against me and, of course, the years and years of abuse. I am not overweight and have a mesomorph body type, not under or overweight. I do not gain or lose weight no matter how much or little I eat and over the last 30 or so years have gained/lost a maximum of 5kg/11pounds. This has also made me complacent regarding my diet and I have never watched what I ate. Junk food, MacDonalds etc almost every week, no vegetables and hardly any fruit. I drank at least 1 litre/0,26 gallons of Coca Cola a day. Homemade meals consisted of greasy fries, pork chops fried in vegetable oil etc. I seldom ate breakfast and often skipped lunch due to a lack of appetite because of my drinking. I ate a lot of chocolates and candy and drank around 5 to 10 cups of coffee a day with 2 to 3 spoons of sugar mainly to overcome my hangovers. I also went on some serious binges regularly, drinking a whole bottle of whiskey in a sitting. I alternated it with a bottle of Vodka or Gin for variety. I was invincible or so I thought.

But then in January it finally caught up with me. I tried to control it but being an addict it was near impossible. The mind is a fickle thing. At least I cut down on the hard stuff but still drank huge amounts of red wine; in a sitting on average 2 litres/4,2 pints a day three to four days in a row and sometimes even more. It now also started getting blackouts on a more regular basis and hangovers that lasted for a couple of days, feeling shaky and nauseous which got progressively worse. At the same time, my discomfort on the right increased in intensity and my lungs started to hurt from all the smoking, especially the dope, which also affected my right side. I subsequently found out that smoking does affect your liver adversely.

I googled these symptoms as I was scared to face reality. A visit to the doctor wasn't on the cards as I thought I could do this cold turkey. Who was I kidding.

On the 30th of June 2020, I finally had my last cigarette. I realized that if I didn’t change my ways I would die. I still had a joint or two now and then being under the illusion that the pain had subsided and one joint couldn't be that bad. Boy, was I wrong. I stopped drinking completely in February 2021 but did have a relapse in March and in May this year with nasty side effects. It was the last time I drank alcohol. In February I had my last greasy meal as my body had had enough and overnight my symptoms started.

I now have a permanent discomfort on my right side below my ribs a few hours a day, especially after a hot meal. I also now wake up every morning between 4 and 5 am with gut pain, not cramps, which prevents me from falling asleep again. Sometimes it feels like a hollow sensation. At the same time, I have very dry and sore eyes and a dry mouth - sicca syndrome? I sometimes also experience some itching on the bottom of my feet. All of these are in the late evening or early morning. The discomfort on the right side also happens soon after I eat and my meals are very strict – steamed vegetables, grilled chicken breast and sweet potatoes and a salad with lemon juice. I am experiencing a new symptom which is when I eat I get a constricting feeling in my throat in the area of my Adams apple, and it feels as if I can’t swallow my food. Is that from my gut?

Ok, this is probably too much information but it is relevant as I have never had this before. My urine is often very foamy and yellow. The colour could be from the Vitamin B but I cut that out for a few days and it is still the same. I also have excessive flatulence. I also wake up every night and have to go to the toilet which was never the case before all this started; now only once during the night. I sleep ok from 11 pm to 4 or 5 am and I do not need more sleep. I do however get tired in the late afternoon and often take a 20-minute power nap.

I changed my diet drastically; steamed vegetables, salads and fresh fruit almost every day. The only meat I eat is chicken breast. I stopped sugar, salt, white bread, baked goods, sweets and biscuits completely. No fried foods anymore, only grilled or baked, boiled or steamed. My snacks are celery and humus, My coffee consumption has been reduced to a max of 2 cups a day with honey. I still have milk, mainly with my breakfast oats with added raspberries and blackberries and a banana all sprinkled with cinnamon but the symptoms persist.

I finally went to a wellness practitioner who gave me a Magnetic Resonance Analysis, a relatively unknown technique. My diagnosis: I possibly have primary biliary Cholangitis, maybe some scarring, definitely liver problems (there are so many variations of liver diseases that it is difficult to pinpoint). She prescribed some Chinese herbs called Panaxea Cool Blue and Livoclear. I also started taking Milk Thistle, Vitamine B-complex and Magnesium. I'm also taking Pepsi-X for my gut as well as L-Glutamine powder and liquid probiotics as she pointed out that the scan showed I had an H-Pylori bacterial gut infection. I also started on Omega 3 tablets, Slippery Elm, Vitamin D and Ocuvite for my eyes and recently Chlorella tablets.

I now also exercise every day. I start my day doing the ‘Fountain of Youth’ yoga routine and then a cardiovascular regime - pushups, squats and back stretches, neck rotations as I do often get a stiff neck or pain between my shoulder blades. This pain I have been experiencing for years though.

Yes, my symptoms have improved ever so slightly but I needed to get a more conclusive diagnosis. Three months ago I went for blood tests and a liver function test which all came back well within the normal range. I read that this is possible with liver problems. I then went and had a liver scan/sonogram. The results did not show anything wrong with my liver, not Cirrhosis, Fibrosis or Hepatitis. Slightly swollen but no scarring whatsoever. My gallbladder and kidneys were also fine. I subsequently found out that this is also not a guarantee that there is a problem. An MRI scan was out of the question as it is too expensive.

But the symptoms continued even with a strict diet, abstaining completely from alcohol and smoking. It has been 4 months now. A really boring and strict diet. I only drink water with lemon, green tea with ginger and chamomile tea with honey. Oh, and a maximum of two cups of coffee per day. My morning routine: after a huge glass of lemon water I then drink hot water with fresh turmeric and mostly followed with a hot cup of ginger water. It clears my gut pain but it reoccurs every morning like clockwork.

I tried a process of elimination and recently tried fasting for 24 hours and four weeks later for 48 hours (ended 2 days ago) but even on an empty stomach I still experience stomach discomfort, sore burning eyes and dry mouth and discomfort on my right side. So it’s not my diet?

I have also recently started applying warm teabags of chamomile onto my eyes, drink diluted apple cider vinegar, besides extra virgin olive oil I now also use flaxseed oil when I cook and even have a tablespoon straight - all for my eyes. I'm now also using Siberian pine nut for my stomach as well as Iodine drops and drink Juniper berry tea. No improvement whatsoever. One day a 5% improvement, the next day a 10% drop.

I have run out of options and don't know what next to do. Yes, my symptoms aren't as bad as many others and I am grateful. Apologies for the long post but I needed to get all the facts down and maybe someone is experiencing similar minimal symptoms but yet this is very frustrating as it seems there is no light at the end of the tunnel. Any bit of advice would be greatly appreciated.

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13 Replies
MLB_77 profile image
MLB_77

Don’t apologize for the length. I’m sure they felt good getting out. Your liver will take a lot longer than 4 months of repair. Perhaps you may be overworking it with all the the good steps you are making. The liver has to “work” to filter anything… good or bad.

As far as getting up to go to the bathroom. This definitely happened to me once I quit. I am guessing it has to being less dehydrated. I sometimes get up 2 or 3 times. I rarely got up to go when drinking.

Good luck, give yourself some grace and compassion and just move forward.

Wantobehealthy profile image
Wantobehealthy in reply to MLB_77

Thank you. I will continue what I'm doing and practice patience.

Kristian profile image
Kristian

Hi Wantobehealthy,

Sometimes getting to the cause of a given problem can take some time. It can be a long process of elimination. However, this is something really that needs to be managed by a fully qualified medical expert, and I dont mean the hocus pocus type that'll tell you to take this herb and that and tell your your aura is off and you need to stand on your head for 20 mins every morning to rebalanced it, lol.

Do continue to eat healthily and exercise. Those will always be good things. But some of those herbs and potions you've been taking could be adding to your problems rather than reducing them. Whilst some may have some benefits somewhere to some people, in the main its just a load of bunkem, as indeed you've already discovered yourself.

So my advice is to be persistent, start from the get go with a propper doctor and see how you go. If problems persist you may need to keep going back and saying so. Eventually they will get to some idea of potential causes and treatment. It just may take a while and need a bit of perseverance.

Good luck.

Hello, welcome to this forum.

Kristian is absolutely right. You are not going to be able to get to the bottom of what is going on with your body unless you have the appropriate investigations and assessment. Trying lots of different things muddies the waters when it comes to a diagnosis. Please be very cautious when thinking about using 'complementary/alternative remedies'. Most are based on principles and an evidence base that is not recognised by the majority of independent scientists. At present, healthcare professionals are not clear on the role and place of some therapies in managing disease. More research needs to be done on the use of such therapies.

Many products are not classified as a medicine and therefore are not licensed, which means you cannot be sure how much of the active ingredient you are getting or how pure it is. Traditional herbal medicines do not have to undergo the stringent regulatory processes that medical drugs have to; therefore manufacturers do not have to prove effectiveness in well-designed large trials.

It is wise to be cautious about the claims made for herbal remedies, particularly those advertised on the internet, as they can offer false hope.

regards

Kakey profile image
Kakey

I'm speaking as someone who has PBC, your wellness stuff horrifies me. That sort of stuff can be toxic to the liver, especially an already compromised liver. I don't know what advise to give you, except to encourage you to drop the wellness and pursue the traditional medical route. Best of luck xx

Juliettebdc profile image
Juliettebdc

You need to be seen by a medical doctor and I wonder if you might be able to offset the cost of an MRI by cutting the many herbs and supplements you are taking. For the liver to heal, it needs less work to do and many of the alternative medicines out there can do more harm than good and can keep your liver working overtime. Keep at it with the healthy diet and exercise and you have done the most important thing which is cutting out alcohol and cigarettes. I hope you are able to feel better soon.

Wantobehealthy profile image
Wantobehealthy in reply to Juliettebdc

Dear Juliet,

Thank you for your advice. After my blood test and liver function test as well as my scan came back clear, my GP could not give me any more advice. He couldn't refer me to a specialist or could not give me a recommendation to have an MRI scan as my results were good. It was a dead-end and I won't go back to him.

I have changed my diet and lifestyle and am exercising regularly, eating healthy and what I now need to do is eliminate or abstain from taking these herbal supplements as all other comments to my post suggest the same. My liver probably needs a proper break.

You are also right. I could have been able to afford an MRI scan if I had not spent all this money on the Health Practitioner and all the herbal supplements but as I said, the doctor could not give me any further advice so I was at a dead end.

Thank you again. I really appreciate it.

Worrywart1985 profile image
Worrywart1985

I am a believer that some herbal/natural remedies are ok, but too much puts stress on the liver. So keep the most important and ditch the rest to give your liver a break. Everything else you are doing sounds great! Lots of veggies and water! Personally I think organic is best to cut down on the amount of persticides etc that your liver is having to deal with. Think about how many years you abused your body…4 months is nothing. Just keep going with what you’re doing and give it lots of time!

bleeny profile image
bleeny

I'm curious - what is a magnetic resonance analysis as done by a wellness practitioner and how could it diagnose PBC?

Kakey profile image
Kakey in reply to bleeny

Magic

bleeny profile image
bleeny in reply to Kakey

Haha - otherwise known as quackery.😀

Kristian profile image
Kristian in reply to Kakey

😆😆😆👍

scotsrish profile image
scotsrish

Good for you this change in your lifestyle will not be easy . I have 30 yrs under my belt but quitting smoking is only two years and only after i had a heart attack. I was a mild smoker but it made no difference to my body. Whatever you try do it slowly and with commitment. One herb at a time because yes sometimes even these can do harm. Your liver probably does have some damage. Did you know tablets can be hard on your liver? Are you taking milk thistle either capsule or tea? One of the best things for your liver plus take good digestive enzymes to help your gallbladder. Your body needs to heal and it will but you have put it though hell now you need to show it some love and patience. One step at a time grasshopper

😉

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