So fed up of feeling ill

[S1cknt1rd]

Hi there,

I had hepatitis about 20 years ago, was itchy and felt like flu whole time. By the time it was picked up it had cleared and I have been clear of the virus since.

About 9 years ago I began to feel tired and overheated. To cut a long story short after blood tests they found nothing wrong and diagnosis was chronic fatigue. I struggle with this a lot as always felt it isn’t and something was missed.

Recently had severe pain under ribs on right side and chest. Initially told it was probably a pulled muscle. It settled back down but I kept having intermittent pain under ribs which I realised looking back has been there for about 9/10 years but because only now and again did not think was related to fatigue.

My GP thinks I have gall stones and is sending me for a non urgent scan. I have told her how itchy I am all over and have a constant taste of bile/ metal, but she’s totally unconcerned and was quite cold when I saw her. She said if it’s gall stones they will probably leave it, I was horrified as can’t cope with these symptoms at all.

I can’t hekp thinking this is more serious than gall stones although sometimes gall stones can be serious on their own of course.

I have a normal temperature, my LFTs were done around 6 months ago and we’re normal.

The weird thing is when I was there she gave me a flu jab saying I needed one b cause of my ‘liver issues ‘. Totally confused me.

Basically I am scared stuff that I have a serious liver condition and not CFS which would explain my symptoms. Which are: fatigue, itchy skin no rash, itchy dry eyes, bad taste in mouth with yellow tongue, bloating, some pain under ribs every day, painful joints.

I always get the feeling the GPS at my surgery think I’m a time waster, I go about 4 tines a year telling them I still feel ill and it’s not CFS and I tried to talk to one about the relation to food , he just laughed at me and said I had IBS not a food intolerance. He wasn’t interested at all on why I thought that. I’m eating a low fat diet atm which helps the pain and hot cold sweat.

The reason I think liver is because it’s similar to how I felt with Hep and I’ve read you can have normal LFTs for years but liver still struggling.

Any advice much appreciated.

Oh and the scan appointment hasn’t come through, apparently she said she will not be putting it through as urgent as my temperature is ok.

[Ballymahon2]

You need to see a hepatologist

[LindyRich]

A new gp might help.

Plus, as Ballymahon2 said, a referal to a liver specialist, since your present gp admits you have "liver issues"!

[Hidden]

There's various liver disorders and only your doctor or one in the field of liver could really advise you. Liver disorders can apparently show up with the same symptons but they need different treatments.

[tonia17]

My liver enzymes were normal for years, no symptoms and turns out I’ve had PBC for over 20 years

[Hidden in reply to tonia17]

How did they discover the pbc? My LFT's fluctuated, slightly elevated then normal over the years so that is when my doctor sent me to the Hepatologist. Are you still symptom free?

Hope you are good.

[Ballymahon2 in reply to tonia17]

How do doctors know you had pbc for 20 years

[tonia17 in reply to Ballymahon2]

We did a health History...I think it went back further than that. I began to have symptoms in my mid 20’s and had an abrupt physical change to my body at that time as well.

[tonia17]

My LFT’s were in normal range last January (2016) and this January (2017) OFF THE CHARTS!

Actually I say symptom free because the symptoms I had I chalked up mainly to my age...symptoms I do not have anymore...

Hot Flushes—my liver is healing and more good parts to carry the load not over working (heating up) I honestly thought it was Hot Flashes...that started in 2010

Urination—I can pee like normal (lol) urea is createdfrom Ammonia (which is a by-product from the liver processing protein) and passed to the kidneys to process as urine...I started having issues with this in 2007...all tests at that time came back normal...

Dry Mouth—very rare now...I thought it was the side effect of taking Claritin, which it is, but I was chugging major water to keep my mouth hydrated...AND (knock on wood) I don’t have sinus issues any more!!! My immune system is getting stronger is all I can reckon...that started in 2014

Dry Skin—between the liver healing and my CEREVE products this is under control now...dry skin been an issue ALL MY LIFE

My Face—toxins were coming thru my skin in my face..i was diagnosed with Rosciasa in 2014 and deal with that too...so redness and pustules are a constant battle...again with the CEREVE products and healing liver it’s better...I have worshiped the sun all my life...🙄 I thought it had just caught up with me...certainly does not help...the worst of it started in 2012 but delt with facial skin issues my whole life

Nutrition—I’m not hungry ALL THE TIME!!! My liver is healing, this is where a lot of nutrients are processed and I’m staying staciated...this started in 2004 (feeling like I could eat the paint off the walls cause I was so hungry)

Weight Loss—I attribute the above for this as well...my body is getting the nutrients it needs so weight loss is happening...lost 17 lbs since April when I first started Urso

Pain in my right side—started in 2005–It felt stiff—sonograms and blood tests came back fine...I should have pushed it but it honestly came & went...by 2014 I was thinking I needed a new mattress...then in 2015 I started Radford University and slept on many different mattresses because I was all over the place (I have a lot of family in the area) so the constant side pain I chalked up to that...

Fatigue—really bad in the last two years but again, working full time going to school full time??? If COURSE I WAS TIRED!!! 🙄

[tonia17 in reply to tonia17]

I was pulling my internship in DC living in Arlington Va when I saw a new doc for my yearly physical...he flipped out with my numbers and I seriously thought they were high because of my torn rotator cuff and being in Diclofanec Sodium for inflammation...I was NOT taking it serious...but I kept seeing the Hepatitus C commercials on TV and I fall in that bottom age range and though I should go ahead and see...

AND here I am...

[tonia17 in reply to tonia17]

My Grandmother had liver problems that everyone in the family said was due to her drinking... after taking my anatomy classes I realized that two or three beers at night a couple nights a week did not cause her liver problems..certainly did not help ... but .I did not give it a second thought...wish I had...

After talking to my dad he said that my great grandmother had died suddenly at the dinner table one night...she was young maybe 40’s? Knowing what we know if the liver was severely damaged in the area of her hepatic vein and it bursts because of that...it explains why so sudden...

So I firmly believe it comes from that side of the family. However, I may never know...my mother (this is her mom and grandmother with the liver issues) refuses to get tested...and so do my 3 siblings...🙄

[Hidden in reply to tonia17]

Sorry to hear about your experiences. Some of it may or may not be pbc related. I have skin issues every now & then. Last year I had this rash on my arm that looked like a burn...not sure what it was. Dermatologist gave me some creams & told me if it didn't heal by a certain time, she would need to get it biopsied. It healed. My Hepatologist was freaked out by the rash & told me I had to see the dermatologist right away, but I couldn't get an appointment that quicky. Then prior to that, I was diagnosed with scalp psoriasis. 2 years ago, I also had this rash all over my neck & itch on my fingers. It went away but it was very annoying. Not sure what it was but definitely my immune system not liking something. Might be the the detergent that the gym used on the towels. Think they had switched vendors for the laundry service. Lots of other little, random stuff too like one day my eye turned swollen & red for no reason within hours. I was so scared & it was so difficult to get a same day appointment to get an opthamologist to check it. It wasn't bothering me in the morning but by 4 pm, I was scared. I finally was able to secured a same day appointment by making a few phone calls & begging for an appointment.

I don't know if any of this is pbc related but I do know it is because my body is so sensitive to stuff.

[S1cknt1rd in reply to Hidden]

I guess I will find out soon, but something is definitely not right! Just praying the scan appt comes through soon. I’m in the UK and the NHS is really struggling right now, v long waiting lists unless it’s an emergency.

Does PBC show up on a ultra sound though? They’re checking for gall bladder issues I think x

[Hidden in reply to S1cknt1rd]

Ultrasound, I think checks for abnormalities in your liver including if your bile ducts are blocked or if you have gall stones. It is one of the tests they do to help diagnose.

Good Luck!

[S1cknt1rd in reply to Hidden]

Thank you xx

[S1cknt1rd in reply to tonia17]

I had never heard of PBC before stumbling across this website and honestly have no idea if it’s that or gallbladder. I do know that I ate some junk food a couple of days ago and symptoms dramatically worsened, itching, pain and hot sweats. I usually sleep with one foot out of my bed the window open to control the hot flushes!

Very irritable and tired and can’t wsit for this scan. Appt still hasn’t come through , they’re treating it as non urgent. I wish they could feel what I’m feeling for a day!

Itching is the worst symptom along with hot sweats. Pain isn’t that bad although I’ve had a couple of attack’s of severe pain.

Thanks for the reply. I hope you’re ok and feeling well right now.

[Hidden]

After 3 yrs of itching, in 1991 I had a liver biopsy which showed very early PBC. I was never prescribed Urso of any form probably because my LFTs were always within normal range. I went for over 20 years of living with PBC and itching off and on, but my doctor always said that itching has nothing to do with the progress of the disease. I used the tanning bed to control my itching because nothing else helped. My dermatologist objected and sure enough, in 2007 I did get a tiny skin cancer on my upper chest. In 2011, my LFTs went out of sight and another liver biopsy showed Autoimmune Hepatitis. In October all my blood tests were better than they have been in ages, even my blood glucose and cholesterol were lower. My Protein is somewhat lower because I had to give up all red meat because my liver simply cannot handle it. I am now adding protein powder to my smoothies.