GGT and ALT's have increased again

Dear All

Brief update on possible PBC!

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

Love

Shropshire Star

[P13jne]

Trish, will speak with you later xx

[Wass71]

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

[Hidden]

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

[Hidden in reply to Hidden]

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

[Hidden in reply to Hidden]

Just seen your message now so thank you!!! Lots of love and hugs Lynne xxxx

[davianne]

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.

David

[Hidden in reply to davianne]

Hi David

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

[davianne in reply to Hidden]

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 👍👍👍

David

[Hidden in reply to davianne]

David your so funny and you made me chuckle once again😊 I like the girl bit ...... hilarious when I'm not much younger than you 😅😅😅

[Hidden in reply to davianne]

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 ......😊

[davianne in reply to Hidden]

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.

David

[Hidden in reply to davianne]

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 ....

Trish

[davianne in reply to Hidden]

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🤣🤣🤣.

David

[Hidden in reply to davianne]

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 ! 😊

Trish 😉

[davianne in reply to Hidden]

How strict are the censorship rules on here?🤣🤣🤣🤣

David

[Hidden in reply to davianne]

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 !,😴

[davianne in reply to Hidden]

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💤💤💤💤.

Nighty Nite,

David

[Hidden in reply to davianne]

Oh my goodness David and here's me going on about 5 hours sleep and I still feel out of it!!!!

I seriously wish I could relieve your spleen discomfort ! When are you due to see your consultant again?

Sweet dreams later if you do manage to doze

Trish

[Hidden in reply to Hidden]

Hi

You and David have made me chuckle 😂 just reading it!! I'm a bit behind!! No comments 😂 take care Lynne

[davianne in reply to Hidden]

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.

Take Care, David

[davianne in reply to Hidden]

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.👿👿👿👿

David

[Hidden in reply to davianne]

Oh Poo David

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 😊

Trish

[davianne in reply to Hidden]

Hi Trish, Annie does know some in the Gastro team, but not my one. Maybe a change is in order, but I bet they would just close ranks on me again.

David

[Hidden in reply to davianne]

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 .....

Trish

[davianne in reply to Hidden]

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,

david

[Hidden in reply to davianne]

Enjoy the rugby! Those are real men😊 not like footballers .. sorry I like both sports but prefer rugby !!!! 🤣

[davianne in reply to Hidden]

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.

David

[Hidden in reply to davianne]

Hi David

Hope you managed to sleep?

Trish

[davianne in reply to Hidden]

Thanks Trish, not too bad, double dose of amitriptyline did the trick. How was your nights sleep?

David

[Hidden in reply to davianne]

Hi Supa

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.......

Thanks for asking

Trish

[davianne in reply to Hidden]

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,

David

[Hidden in reply to davianne]

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

Just leaving now for the theatre ! Byeeee

[jane1964]

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

[Hidden in reply to jane1964]

Hi 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 😅😅😅

[jane1964 in reply to Hidden]

Hello I don't crave any individual foods but have times when I really want carbohydrate foods don't know why.

[Hidden in reply to jane1964]

Hi Jane

Thanks for reply! I dont normally crave foods but the last few weeks onions which is weird !

Nighty nite

Trish

[Bootandall]

Sorry to hear about this setback, hope you get some answers soon! You've been very patient.

[Hidden in reply to Bootandall]

Thanks Boots!

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!

Love Trish x

[Bootandall in reply to Hidden]

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. 😘

[Hidden in reply to Bootandall]

Cheers Boots!

How's you as I know your fighting your corner too?

X

[Mirlo]

Sorry to hear your news. Inconclusive results turn your head and spin you around. Recurring symptoms, when you hoped for the all clear is devastating.

Sending loving, healing thoughts to you x Joy

[Hidden in reply to Mirlo]

Hi Mirlo

Sorry for late reply as it's been one of those days and I'm just catching up on all messages.

Your correct in your comment about the reocurring symptoms are a pain, but now blummin cold sores have broke out too! Errrr!

Thanks for loving healing message which I reciprocate !

Love Trish 😘

[Mirlo in reply to Hidden]

Lovely Trish

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

[Hidden in reply to Mirlo]

Hi Mirlo

Chicken wraps yummy! Will PM

Love Trish xxx

[Hidden in reply to Mirlo]

Hi

How did it go today?, Take care Lynne

[Mirlo in reply to Hidden]

Chopped myself off. Hope you have a good sleep tonight. Love and hugs

Joy x

[Hidden in reply to Mirlo]

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!

Love Trish x

Ps! Hubby snoring above Errrrrrr

[ThreeSmiles]

Aw that’s a shame Trish ☹️ - hope things get back on the straight and narrow soon....

Thought you’d been a bit quiet lately.

Angus

[Hidden in reply to ThreeSmiles]

Hi Cloudy

I too hope for the Straight and Narrow as you state😊.

I am a quite person deep down 😁😁😁

Nighty nite

Shropshire Star🌟

[ThreeSmiles in reply to Hidden]

We know you’re quite a person but are you normally quiet? 😁

Angus

[Hidden in reply to ThreeSmiles]

Ha! Ha! Blummin spelling error! 😁

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!!!!

Hope this answers your question!

Nighty nite

Trish

[ThreeSmiles in reply to Hidden]

Coolio - nice answer 👍.

(I was only teasing re spelling - I knew what you meant 😁).

Angus

[Hidden in reply to ThreeSmiles]

Angus

I knew you we're teasing me😁 However my spelling is a bit...... sometimes !

Bye for now 😉

[ThreeSmiles in reply to Hidden]

Just sometimes? 😁

[Hidden in reply to ThreeSmiles]

My answer is ....................😁

Nighty Nite Cloudy/Angus ... great names

Shropshire Star 🌟

[Hidden in reply to ThreeSmiles]

My Dolly Mixture reply.................🤣🤣🤣

[alfredthegreat]

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

[Hidden in reply to alfredthegreat]

I do too Alf! My fingers are crossed for next months tests to be gooooooooood! 😁 and not 😱

[alfredthegreat in reply to Hidden]

Keep thinking positive

[Hidden in reply to alfredthegreat]

Will do!👍

[sophiaS1980]

All my bloods were normal but had very high AMA.

[Hidden in reply to sophiaS1980]

Thank you Sophiab1980 for reply!

How are you otherwise?

[sophiaS1980]

i sent you a message

[Hidden in reply to sophiaS1980]

Cheers ! Just replied!

[Hope1011]

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

Hope

[Hidden in reply to Hope1011]

Hi Hope

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

[Hidden]

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

[Hidden in reply to Hidden]

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

[Hidden in reply to Hidden]

Thank you. I do hope your friend is ok. Take care Lynne

[Hidden in reply to Hidden]

She was out walking her dog at 6 this morning, so I'd say she's ok!

[Hidden in reply to Hidden]

Definitely!!! Xxxx