Well here's me thinking that due my July bloods returning to normal I would be discharged by my consultant at my next visit in October. I thought my healthly eating and exercise was the reason for the good blood results. ! Well it looks like I may have been wrong!
For the last 2 to 3 weeks I've been feeling nausea every morning, extremly tiredness causing me to go to bed around 6.30.
I'm itching again whilst in bed which has now increased to the day time too, pale poo's pains in legs and arms, dry eyes and mouth which are all the same symptoms I've had on and off throughout the year!
Last Monday I decided to use one of my spare blood test forms and popped to the hospital for LFT's tests. This morning as I was itching so much I then decided to pop to the docs and was informed my GGT and ALT's bloods had doubled again.
The doc did talk about further CT scan on my abdomen but I'm not sure if that's going to happen or not as we chatted about my previous scans. I've been asked to double my Omeprazle to twice daily until I see my consultant on the 8th of October! I'm now presuming I wont be discharged until they find out the cause!
Question to PBC patients!
Did you have normal blood tests whilst under investigation for possible PBC
Hi, my bloods were never normal, for at least 5 years before diagnosis the alp was more than double the upper limit of normal.
According to the guidelines on diagnosing PBC, the alp is the blood test they observe.
Raised ggt and alt are not diagnostic of PBC. They may have to look elsewhere? Repeating the bloods every 3 months and see what happens. There are many reasons these bloods could be raised. Luckily October isn't too far away now.
Take care
Wass
Hi
Just thought, could you phone consultant's secretary to try and get your appointment brought forward. I did that as my appt wasn't until February, 12months since my last one!! I've been feeling so rotten. Anyway it's now 7th November!! I've got full blood count plus a couple more and ultrasound,he wants to look at them, if they are bad, he might bring it forward again!! Please take care . Speak later . Love and hugs Lynne xxxx
• in reply to
Hi Lynne
Thanks for suggestion but I've answered your question in my reply to David !
It's still a shame that you still have to wait until November which is quite away off!, However it just goes to prove how busy the Liver Departments are !
Maybe catch you later
Trish
• in reply to
Just seen your message now so thank you!!! Lots of love and hugs Lynne xxxx
Oh Dear Trish, sorry to hear of your latest bloods, and the return of your symptoms. What a shame after the good news you had before. Could you not try and get your appointment brought forward?, it's a long time to wait. I hope and pray you get it sorted soon, I know the itching, limb pains and extreme fatigue are so debilitating.
Cheers for reply which is lovely of you. Nope on getting earlier appointment as the October date is an already rearanged one, the following one offered was December !Errrr.
Trish, that's the NHS nowadays i'm afraid. Just try and keep your chin up girl ( I know you will 😁😁😁), you are the most positive person on the group 👍👍👍
Just realised I did get some good news David , my vitamin D level is 3 times higher than the normal requirements 😁. The doc asked me if I was taking vitamin D tablets and when I said nope she said lucky you and smiled ......😊
That's great news Trish, you must spend all day, every day outside in the sun 😁😁😁.I don't suppose you have any platelets going spare, do you? 🤣🤣🤣. I had to have a course of 12 vitamin D jab's a couple of years ago in my backside, and Annie was in charge of the target practice🤣🤣🤣. I just take folic acid tablets now.
Good Morning David who always makes me smile with your kindness and funny notes that paint pictures in my mind of Annie giving you those B12 injections! He!he! Sorry I didnt mean to make fun as my hubby was in the same situation about 3 years ago for the same amount of time and is now taking B12 tablets for life ! The symptoms for B12 deficiency are not nice if not picked up in time so I do hope your ok now as a sort?
I bet Annie was chuckling away when pricking your backside ...😅! You really do know how to cheer me up!,😁
Cheers David .....
Rock Chick is now practicing G and Em cords along with A, D and E ....
Yes Trish, Matron Annie had great fun, especially as the needle has to go deep into the buttock😥😥😥. She alternated between left and right buttock each day, but I never felt a thing, apart from the ignominy of lying over the dining room table with my pants down🤣🤣🤣.
He! He David! Seriously you and Annie are such an adorable pair so please send me any other funny stories you wish to share as your such a great tonic ! 😊
I think you were just explaining that film clipping from ' Carry on Doctor' but forgot to mention the leaving of the stem flower afterwards😁😉🤣! You know the one I'm talking about dont you?????
Anyway sorry for the late reply as I've just woken from around a 4 or 5 hour sleep ! I think my ear infection, along with lack of sleep last night caused by liver playing up and new meds knocked me out cold! I'm now praying I'll sleep later !,😴
I do remember the carry on film, I'll tell Annie about that 🤣🤣🤣. I know what you mean about lack of sleep. I've had very little sleep all week. My liver and spleen feel like their getting bigger than ever, and the pressure on the Glisson's capsule gives me a lot of pain, with very little I can take to ease it😭😭😭. i will go to bed at my usual 8pm, and pray for at least some sleep💤💤💤💤. Hope you get some sleep too Trish💤💤💤💤.
Hi Lynne, it's a true story, Matron Annie was a Matron in the Bucks trust, and went by the nickname of "The Tartan Terror", but she's very caring and not scary at all, most of the time 🤣🤣🤣🤣. Glad you enjoy the banter.
Hi Trish, my next appointment is April 2020. He has increased my check up period to annually. Before my appts, I used to have bloods, US and a gastroscopy, but last time all I had was a US, with a blood request ticket given at the appt, no gastroscopy. He is in total denial that my capsule pain is liver related, and because of his letter to my GP stating that it was musculoskeletal, not liver, my GP bought it hook, line and sinker, so no pain meds, just a referral to physio, which I declined.
GP even called the consultant a Wizard. I just laughed, and walked out of the consulting room, so I'm not happy with these two.👿👿👿👿
Shame Annie doesn't have any clout with various surgeons to pull a few strings !!!! I really do feel for you kiddo! Yep Kiddo ..... Hope this made you smile😊 my Supa hero coping as you do and still making me 😊
Now listen to me!!! Bossy's kicking in here, if Maron Annie can pull a few strings then let her do it as you'll be surprised at the difference it can make!
My niece has a fairly high position at the QE and pulled a few strings for her mum who then had a 1.2 kilo Gist removed by the leading surgeon who now keeps a closer eye on my sister than she would have had ... Let Annie help you or this Rock Chick will be kicking your butt too!!!! You know I'm on joking dont you? I just dont like hearing of anyone suffering ..... like you .....
Hi Bossy, Annie's 10 years retired, and still has a lot of colleagues at the trust, but is reluctant to pull rank or ask for favours. She knows the pressure they are under, and wouldn't add to it. I used to help Annie with her wards, mostly putting up notice boards, rearranging the beds etc, and even revamping a ward when she started the Stroke Unit at High Wycombe Hospital, so we are both known to many of the older staff from back then. I might try and broach the subject again, and see what she says. If Annie was still working there it would be easier as Gastro was one of her wards. Rugby League Challenge Cup final is on today, Whoopie 🏉🏉🏉🏉😁😁😁😁 Can't wait,
Yep Trish, rugby is a real man's game ( Ooops...except when women are playing😊😊😊) Did you know that most rugby players would be rated as obese on the BMI calculation👎👎👎. Well, that's my excuse anyway 🤣🤣🤣🤣 There is an alternate calculation which is deemed to be more accurate though👍👍👍, but the NHS won't use it.
Well to be truthful I fell asleep around 8 and never woke until 6-6.30ish which is un heard of for me especially as I'd slept 4 or 5 hours before going to bed!
Whatever's going on with my Liver knocked me truely out for the count!
I've just returned from the gym after only doing an hour on the bike then floor and weight exercises as I'm still tired but hungry too!
To be honest I'm not keen on this feeling so tired larky.......
Hi Rocket Girl, I know, constant fatigue is a bu99er😠😠😠 I could never get on with the exercise machines. I just found them so boring. I used to ride a bike a few years ago, but didn't feel save on our country roads, so gave it up. Annie's just gone out for an hours run, and I'm bathing Teddy...... I think he rolled in some fox poo 🤢🤢🤢, Have a great day,
I just love your Teddy, he's my sort of dog, always up to mischief 😊😊 maybe he's done it so you'll give him a bath and a good rub down ??? Clever dog! 😁😁
Like Rocket Girl ........THis is me from the plane shouting weeeeeeeeeeeeeeeeeeeeeeeeeeee
Hello I had normal liver function tests at start with a posative AMA, antibody and symptoms aching joints extreme fatigue and itching hands and feet especially at night.I was monitored but not treated at this point after about 4 years my alkaline phosphatase result rose but all the others remained and still remain normal and I was stated on Urso, this initially worked but then after a few years levels rose again.I hope you get some answers soon.Jane
It's so weird as about 3 years back my LFT's rose and then dropped numerous times until last year when they stayed high for around 12 months then with my healthly eating plan started to return to normal again and now I'm totally confused!
Can I ask do you crave any type of foods? Onions for me lately 😅😅😅
Its so weird as I didnt feel right in July either but my bloods came back normal then, however the symptoms have progressed on since then so the bloods have highlighted the change. Oh well let's hope they get to the bottom of it all eventually!
That would be frustrating, you know yourself better than any test. Your persistence will hopefully pay off. Try to get lots more rest, now is not the time to burn the candles at both ends. Take care. 😘
Thanks for your message. You must be exhausted today. I needed a hug too. Lotfi is not feeling good, he will go and get his warfarin checked tomorrow. Has been eating dark green veggies. I have Dwp coming to my home tomorrow. Dread it but trying to stay sane. We are both wrecks, Lotfi and I lol. Lunchtime tomorrow, I will escape and await the outcome of her visit. Coffee and chicken wrap for lunch lol
You'll laugh when you read this note this morning in reply to your earlier comment ..... hope you have a good sleep! It's now 2.12am and I'm still blummin well awake and I'm about to scream inside my head or start counting thousands of sheep or whatever make me feel warm and cozy so that I can fall asleep on the sofa .......
Nighty nite sweet thing! Hope all goes well today and For Lofti too!
Re Quiet! I'm like a bag of dolly mixture's..... I like to be quiet, chatty on line, kind always, shy in some situations and bubble in the right company!!!!
That's a real downer after all your hard work. Keep it all up though as I'm sure it's the best way forward. Hope that your next results are much better Best wishes. Alf
Hi, sorry to hear about your symptoms. I read your story and it felt like you wrote it for me. It is strange how some of our symptoms and events are identical. I also believe in life style changes and of course it helps. But when this kind of thing happens then it leaves you in a very confusing state. You don’t know what you’ve done different 😯 anyway hope everything settles down quickly for you. It could’ve been some thing going on in the air which may have effected your liver. Xx
Thank you for your lovely reply as it's so nice to hear from another with similar medical symptoms to my own! I agree it's so confusing when you have no idea why this has happened again.
Last night was a bad one for me as I never slept until almost 4am due to a blummin bite within my right ear which I forgot to mention to my GP yesterday! Unfortunately it swoll out yesterday and is now infected and inflammed.
Around 9 30am I crawled my butt to see the chemist who could do nothing, so off I popped to see if I could see a nurse or doctor!!! Receptionist said sorry no appointments Errrr, so I requested a call from GP before 1pm and off I drove.
Within 5 mins the docs called and gave me an immediate appointment ! 😁😁😁. I'm now on the following medication .... Doxycycline , Chlorphenemine Maleate and Paracetamol and instructed to call 111 if its doesn't improve over the next 24 hours! The doc couldnt give me anything stronger due to liver issues! Lol
I think I'm going to wrap myself in a black bin bag and chuck myself in the rubbish heap........ 😅😅😅 joking.....
I'm ok otherwise and must keep focused😁 so I'm going to the gym later beforeI miss my 4th day .....
My fingers are crossed your having a better day than me ?
Here's a hug
Love Trish xxxx
Hi
I hope you you've managed to sleep which means you will read this later.
I'm pretty rough after my fall. There's only me who could go to open a window , turn round and trip over.y felt tips box!! I hope I sleep 😴 tonight? Hope the antibiotics work soon. Love and hugs Lynne xxxx
• in reply to
Oldham - so sorry that you fell over. I hope no serious injury? You aren't alone, my friend was de-cluttering her wardrobe yesterday and fell in the box of stuff to chuck. (If only it was the box of stuff to keep it wouldn't be so upsetting... Take care xx
• in reply to
Thank you. I do hope your friend is ok. Take care Lynne
• in reply to
She was out walking her dog at 6 this morning, so I'd say she's ok!
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High ALT and GGT (rarely drink alcohol)
I'm more confused than ever! 
Cirrhosis and liver function
