Some of you on here are aware I'm under investigation for PBC due to high blood readings picked up last year after routine check up ! The bloods have now improved and all scans have given negative results.
I'm now baffled more than ever as I'm itching in various places!
Two days ago I was very naughty and scratched my finger until it bled and my hubby said I have no will power and should have left it alone !
Has anyone else had negative scans and but still itches!
My bloods have improved which I'm putting down to healthly eating and exercise.
I don't see the consultant again until October and I only saw my GP 2 weeks ago followed by more blood tests which are fairly normal !,
It's not like me to be lost for words 😂😂😂 but this itch is Errrrrr and I'm not sure what's causing it! Any advice welcome
Hi Trish. Have you read 2 recent posts re itching? There are lots of replies with lots of creams available over the counter. I also mentioned I get excema and am on a prescribed ointment called ELOCON. Good luck 😀
Yes, I did read upon the articles yesterday and will try some of the creams! I'm just trying to establish if anyone has got PBC but had negative results in the early stages !
Mine originally said weak but positive for possible PBC but now I'm confused !'
Oh well, I must plod on but thanks again for your concern and advice !
Hi Trish. My wife has very sensitive skin. If she uses anything like cleaning fluids or washing up liquids without wearing rubber gloves she gets small patches of intense itching on her hands. Like you she has scratched places raw. Through my liver problems and the itching involved, it was mainly on my legs arms and torso. I can't remember any itching on my fingers or thumbs. Not saying that it's impossible that it's caused by the liver but I would think it's more likely from another cause. Alf
I'm itching alot on my arms, head , forehead and on my back! A year ago it was mainly my back and legs that itched but recently I'm itching in more places. My fingers healing ok and no longer itches 😁😁
Cheers for note! Hope your feeling more alive today if you know what I mean ?
HiTrish, never had itchy hands, but loads nearly everywhere else. That was when my blood was going haywire, but it's settled down now. I used to have loads of good scratching posts around the cottage to get relief on by back. Annie used to say I looked like one of the horses at the stables🤣🤣🤣. I never found anything that worked, so I did scratch my chins raw.
Wish it was me smiling as garage just called to say my car requires a new wheel bearing sensor costing £320 including today's inspection/labour ! Errrrr!
Derek's just told me off again for scratching my head ! ERRRRRRR! Its pick on Trish day 😣😣😣😣😣
PS
At least I'm in Derek's good books, I just found his missing car keys saving him £112 for replacement spare set😁😁😁! I found them in a place he'd already checked too☺️☺️☺️
So you came out on top in the end Trish 🤣🤣🤣 Car's are very expensive to maintain. Try buying a set of run-flat tyres....... you almost need a mortgage😥😥David
It's my head, forehead and side today! Derek's already told me off at least 5 times in the car this morning alone!😣😣😣😣! He seriously does'nt understand!
I've just collected hard copies of my blood test results and everything has returned to normal so I'm totally confused now!
Very true CountryWalks. Diabetes is another. A very common cause is dyshidrotic eczema. It can be caused by alot of things like stress change in soaps or detergents like Laura mentioned. It usually comes up as little fluid filled blisters like the picture looks like. I can't say as I'm not a doctor of course but a friend of mine gets dyshidrotic eczema and it certainly looks similar.
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Hi Phoenix
Lucky me on the diabetes front, no sign of that either so I'm doing something right! However I used to have eczema in my teens but none since!
Again many thanks to you and everyone else for your concerning replies ! I've decided to just move on and talk no more about my medical ups and downs until I've seen the consultant on the 8th of October!
Well this morning should be interesting as I've been asked to wear my British Liver T Shirt and report to my sons company for photoshoot !!!! I'm not sure were this is leading but hopefully for somekind of corporate promotion re my Sky Dive! 😁
Todays the first morning I've woken up feeling fine so I'm going to put the itching on the back burner as the saying goes! With regards to my kidneys I do have 2 small kidneys cysts in both kidneys which was confirmed last year after a CT scan. As far as Im aware all cysts are fine and not causing any issues like a few growths I have on both lungs too! GP did a full blood test covering everything and alls fine on your kidney question !
Many thanks for your kind concerns but I've now decided to get on with life , no more mentioning itchy skn after today! Lol
Hope your getting on top of your medical problems too?
Thats good news if your feeling better .well if your blood tests are okay im sure youll be fine .and no im not on top of my medical problems not feeling good at all im itching badly and in pain in my back almost constantly i wish i had never drank if only i had known it could harm me like this looking back i was nieve my upbringing was rarther sheltered .the way im starting to suffer now i would not wish on my very worst enemy alcohol is not worth loosing your life over i wish i stayed well clear of it now and getting help for liver problems is no easy task.
No im still waiting i havnt felt good this morning had bowel problems i went to an after wedding on sat i didnt want to go but it was an old freind they did a hog roast i think thats upset my tummy plus i think its reacted with my lactulose . are you going away as in packing ?.by the way i was looking at your photo of you on the other post you put on you look fantastic for a lady in her 60s your very pretty xx
Oh my! Calm down with the compliments! I do try my best to look ok as I'm scared of getting/looking old!
I avoid booze and cigs as both age your skin! Well I'm lying there, I do occasionally have one small fruity gin topped with lots of fruit, ice and ginger ale as a treat maybe once a month or a tiny German bottle of larger! Lucky for me I've only ever been drunk three times in and life and I hated the bad heads so I dont miss it at all!
I'm looking forward to hearing that you have a date to see the liver consultant. I do hope you feel much better soon.
I forgot to mention, yes I'm driving down to Brittany tomorrow stopping off at Hon Fluer for the night for some mussels! Sunday going to a Glastonbury type festival to watch Christine and the Queens in concert then back home!' My cousins family are house sitting which is wonderful as they'll be watering my lovely flowers😁
Wow that sounds amazing im so jealous i used to like escaping but since i became unwell 16 months ago that does not happen now i get tiered and im in pain . I hope you have a loveley time you desreve it your a loveley person xx
Have you changed your soap, shampoo, conditioner or shower gel or washing detergent recently? I only use cleansers and facial moisturisers from the ' simple' range.... no purfumes in them.
It may be some kind of allergy you have just acquired. Its possible to get allergies to almost anything at any time of life these days
Nope on all! As an ex nurse that was one of the things I did think about! I'm also not eating anything different either!
I'm putting myself in the weird category until I see my consultant! 😁😁!
Cheers for reply anyway!
I'm now off to meet a lovely lady who's writing an article on my sky dive! Hopefully photos will be taken of me wearing TShirts from the British Liver Trust and the QE Hospital which arrived 5 minutes ago! ..... Fate is helping me as they arrived in time 😂😂😂
It worries me a little when you say negative scans. Not sure what scans your referring to, but as I understand it scans are not a diagnostic tool for PBC. PBC can be diagnosed by blood tests and or a biopsy. Some scans can inform your doctor of what stage your at, by the stiffness of the liver, but if early stage before any damage has occurred it would read normal even with pbc.
I only itch minimally with pbc but it’s only just started, so can’t answer your question about itching and negative blood tests,. I was diagnosed nearly 10 years ago after going to GP about something else, I had the AMA M2 antibodies and a slightly raised ALP, at a high enough titre for a dx.
However it’s one of the most common symptoms that take people to the doctors. Theres no relief from scratching and it can be any where on the body, including the hands and feet. Mine feels like insects under the skin. I use a 2% menthol cream from the chemist, because I only itch when I’am hot and this cools the skin.
Trish, I would advise you to call the PBC foundation with your blood results ( not sure what you mean by fairly normal) and what’s been tested and how long you’ve been seeking answers, it’s not nice being left in limbo. They will help you through this minefield and help you compose relevant questions for your consultant and to ensure every avenue has been looked at. Please please call them your such a support to others, you deserve this support for yourself. Take care, have a good day.
In May of 2018 my GGT was 150 which I know is not extremely high but was of concern to my GP ! Over the following months until February of this year they stayed at around 145 to 148 ish! My ALT were also raised to 58 which again is not that high. I do however have a medical history of my LFT's shooting up and have been asked numerous times by various GP's if I have a drink problem!!! Errrr!
Today my GGT is 42 which has not been that low for 15 years plus.
Your correct about the PBC only being confirmed via bloods or by a biopsy! The MRI CT fibroscan and Ultrasounds highlighted no problems which was excellent news! Just for the record I never requested any of this as I thought I was fairly healthly but slightly over weight which has now been sorted by healthy eating!
I'm not sure whether being over weight could have caused the raised autoimmune bloods to raise for almost 12 months!
With regards to the itchy skin, this I cannot comment on any further as I have no idea what's causing it or the muscle cramps in my legs and arms!
All of the pains around my Liver region have now gone since eating healthy too! However I still get a swollen bloated upper gut for no apparent reason which I'm living with.
It might be worth calling the PBC Association but I feel like I could be wasting there time now that my bloods are almost normal. My haemoglobin is the only one slightly raised now along with my cholesterol which has always been raised. My GP not concerned about either as I'm not diabetic and my blood pressure is normally around 62 over 112 ! This was a joke to see who's awake 112/62 well spotted WASS 71😉
Maybe in October I'll be discharged by my consultant and will then be leaving this forum after my sky dive as I will no longer be a liver patient under investigation 😣😣😣😣!
I must say I'll miss you all !
Trishi /Rock Chick
in reply to
Aw Trishi - maybe we will meet n heaven soon if you’re 62/112. ☹️.
Ah Wass saw it too. She made a funny comment about it- good one wass. I’m afraid I took you at face value ☹️
in reply to
Oh poo my reply just disappeared into cyberspace! Errr!
I wrote! ....
I'm so pleased Wass picked up on my deliberate error as it was a test to see who's fully awake and reading my notes, plus I was running out of ideas to get you all chatting with each other 😂😂😂😂sick I know!
We shall meet in heaven as our endings are inevitable! It all depends on how long you want to hang around as some move on quickly 😉😉😉lol
I'm now at the gym trying to get over another garage bill of £335errrr
in reply to
Oh dear me ☹️. Hate to admit but we’ve just paid £1500 for travel insurance. All my fault too. Conditions declared Miles 13 Wife 0.
Oh god don’t tell my missus that!! She is so looking forward to going away once I’m 6 months post tp!! She won’t be impressed if insurance is that much!!😩😩
I won’t tell her - promise! Plus it doesn’t cover USA, Canada, Mexico or the Caribbean . It was £900 more to cove those areas ☹️. On the plus side - is there a plus side? - it is for a year lol.
I hope your BP isn't 62/112 as this would be a very high diastolic blood pressure?? Maybe you mean 112/62, did you do nursing in Australia they are upside down too. Ha ha.
Regarding PBC with negative results (and I may have mentioned this in a post when you first joined, so forgive me if I'm repeating myself), the EASL guidelines have a criteria for diagnosis. This is copied from those guidelines :-
EASL recommends that in adult patients with cholestasis and no likelihood of systemic disease, a diagnosis
of PBC can be made based on elevated ALP and the presence of AMA at a titre [1:40 (III, 1).
8. EASL recommends that in the correct context, a diagnosis of AMA negative PBC can be made in patients with
cholestasis and specific ANA immunofluorescence
(nuclear dots or perinuclear rims) or ELISA results
(sp100, gp210) (III, 1).
9. EASL recommends against liver biopsy for the diagnosis
of PBC, unless PBC-specific antibodies are absent, co-
existent AIH or NASH is suspected, or other (usually systemic) co-morbidities are present (III, 1).
10. AMA reactivity alone is not sufficient to diagnose PBC.
EASL recommends following-up patients with normal
serum liver tests who are AMA positive with annual biochemical reassessment for the presence of liver disease.
I think number 10 answers your question - they should recheck your AMA and LFT in 12 months. Regarding uss, they are recommended to rule out other causes of raised LFT, like gallstones etc. Or more advanced liver disease. As they are not looking at the cells, they would not be able to diagnose or rule out very early stage PBC.
I hope your itching improves, I know how horrid it is. I'm currently battling all over itching, in fact I don't know where to itch first!!! I agree menthal cream does give momentary relief, and is worth a go, (not on open skin though, I think that would smart a bit). Gp can prescribe as a tiny tube is about £6, and won't last long if you have all over itching. I got a big 500ml bottle with pump dispenser from Gp, which is much better. I also have a sedating anti histidine to take at night, which helped for a short time, but doesn't do a lot now.
Yes, I deliberately write in code specifically to bamboozle you Milli. Which bit would you like me to translate into PiloMilo friendly language? Hee Hee!! 🤔😜
Just so you aware I only did 2 years of nursing before my life changed and never completed the full training! Sadly I regret every moment !
I'm going to digest your message in detail when I get home but did understand most, not like Milliplop! Sorry Miles as I just love winding you up until October ! 😣
Oh shame, I'm sorry to hear that about the nursing. I was just being cheeky because I assumed you'd had a 'brain fart' I think they call it, rather than saying a senior moment?? 🤔 I often type crazy stuff without realising, especially when I message late at night. Also my brother in law lives in Australia and we often joke about things being upside down!!
If you don't fully understand those EASL guidelines, the PBC foundation have produced a service user version to make them more accessible. Just search their website. Sorry I can't send you the link, but not sure how to on my phone. And I'm a technophobe!!
Basically, I think your Dr seems to be approaching your situation in a sensible, pragmatic way. Keep an eye on test results, and recheck them 6 - 12 months time.
Best wishes
XWassX
in reply to
Oh - Do I get a reprieve in October then 😁👍
in reply to
Ok smarty😁 I know you like to follow things through😊 I'm letting you off ! However you knew ! 😁lol
in reply to
Hang on a minute ! October! Are you ?
in reply to
I haven’t got a clue what you’re talking about! October is a marker for what? Come on Trish 😁
in reply to
You referred to October !
I thought youd picked up on an earlier comment that I made relating to my possible discharged in October after seeing my consultant due to normal bloods again! I shall then be leaving the forum after sky dive as I'm no longer a patient with an illness or recovering from one that I can give advice on!
Now less of being bossy ! I'm not....
😁😁😁
in reply to
Umm You referred to October 21 hours ago:-
“I'm going to digest your message in detail when I get home but did understand most, not like Milliplop! Sorry Miles as I just love winding you up until October!”
Well, I had pbc, and generally most of my numbers were ok. My bilirubin went through the roof during some of my ‘doolally’ moments, but generally not too bad. But all the time I’d scratch my lower legs. Used to drive samantha mad!!
Cheers Andy for your note! ! Based on my bloods todate I personally cannot see me ever going down the TP route! However Derek's just told me off again !Errr for scratching my arms and hands! He's now on his ipad lookng up other itchy causes which I find hilarious !!!! 😅😅
The foods that bad! My amazing ex brother in law was the Executive Chef over the QE Food for above 40 years ! He retired some time back! When did you have your TP done???
Only 8 weeks ago since your TP Congratulations my friend! How are you really feeling after losing that large amount of weight in such a small amount of time!
I must say your amazing answering my queries with all youve recently been through ! Thank you .
I must say, since being released....sorry, discharged, I have felt absolutely fantastic, just like normal!! (Whatever that is!!) my wound keeps reminding me I’ve just had surgery but that’s all!! It’s very boring not working!!
No, sadly not close enough to QE!! About 2 hours away, just outside bath!! Back there again on Thursday for clinic!!
There's no need to apologies about release/discharged as I understood!
Just behave and no heavy lifting at all! Pilomilo will tell you about his incident if he hasn't already ! I know he's still in pain which is such a shame!
So you live close to Bath which is such a pretty area, shame its a bit of a trek to the QE, hope your journey up is a comfortable one on Thursday!
It was the breakfasts that got me Andy. By the time they got to us they had almost always run out of yoghurts and the toast well umm it was seriously like cardboard - stone cold cardboard as well! The food at Royal Derby is much better - only my opinion though!
I'm guessing it's fatless ice cream ! No taste! 😣😣😣
in reply to
To be perfectly honest guys, toast always tastes like cardboard if not munched up from within a certain amount of minutes from the toaster! You cannot blame that on the chef on this one! I'd fight his corner!🤼♂️
Come back to me with something more tangible than toast😂😂😂
I love winding you guys up .....hehe
in reply to
Didn’t blame the chef. It is the System that’s at fault. They shouldn’t start delivering food at one end of the building with the toast already loaded so that by the time it gets to the last ward it’s a disaster!
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You are so correct in your comment! 😁 its the system!
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Here's another thought!
I bet your an expert buggy driver now around your hospital! Just think how happy the patients would be if you delivered hotish toast with your smile 😊😊😊😊😊
Ah! You did have high bloods ! Mine are totally normal again, hence my earlier comment that I may be discharged in October after seeing my consultant ! Then its bye! bye to you all I guess 😣😣😣😣
Hi Sophiab
Thank you for your note , I'm sorry your suffering with this horrid diseases! Your symptoms sound similar but for now I'm giving up trying to guess what's going on! I'm just getting on with my life and logging on my computer the days I'm not 100 per cent! Maybe it's my age 😁😁😁 it's definitely not the change that's for sure as that happened in my 30's! Lucky me😁😁😁😁😁
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