Gastro Referral

[Sophia1968]

hello everyone,

I have not posted for a while because I felt like I was being a pain asking questions all the time, I do still hover in the background and find this site and it’s members a great help and full of knowledge… As some of you may remember I was never given an actual follow up or diagnosis after receiving a fibroscan score of 21.5, this has led to almost a year of anxiety, worrying about what is going on, and whether I am doing what I should be to help myself, every time I have seen a dr or been prescribed a med since, I have questioned “is it ok for my liver”? if I get a cold I ask the dr will my liver be ok…..all I wanted was a referral but no one listened, eventually I was telling the nurse how I worry constantly about my liver etc and the next day a dr called me and finally referred me to gastro, ( they were prob fed up with me keep going on about my liver) Well my appointment is next Wednesday and now I’m dreading it, dreading what they will do or what I will be told, all I wanted at the start was a referral but then survival mode put me into head in the sand mode, I felt happy not knowing what was going on, now reality is hitting me that I have to face up to it all again now, and I know it’s best to know what is going on, but I’m scared it will be bad news and I will be back in the dark place again, my little world of not knowing has made me happy, I just feel so scared about going next week, can anyone tell me what I am likely to expect at the appointment as I have not been told anything apart from the time and date to turn up, thank you for reading this, I know others are dealing with so much more and I’m really not being disrespectful with this post which seems a minor thing, it’s just that to me it feels like such a problem, I feel scared and anxious xx

[AyrshireK]

Go to the appointment and take with you a notepad in which you should jot down any current meds you are on & dosages, any/all symptoms that you have/had and all the questions you want to ask. Obviously at this stage you want to confirm whether you even have liver disease and at what stage it's at. The appointment will likely just be a chat, a history gathering exercise and you'll probably get some bloods done. They will probably arrange further tests - maybe an ultrasound or repeat your fibroscan.

Don't bury your head in the sand, at this stage you don't even genuinely know you have a problem. It could be less serious than you've feared but even if it's not and you do have an issue then knowing about it is the ONLY way you are going to get on with treating it or getting the appropriate care going forward.

Best wishes, Katie

[Sophia1968 in reply to AyrshireK]

Hi Katie,

Thank you so much for your reply, great advice as ever, I will definitely take a list of meds and a notebook with questions that I need to ask, you are right, I need to know once and for all what my situation is, I have looked only at the negatives which were severe liver impairment on the ultrasound scan and this fibro score, I should at least have felt hopeful that my bloods were normal and that I did not have any bad symptoms, im praying things are not as bad as I have imagined but I need to know don’t I …. As you say if I do have a problem and need care, this is the only way I will get it, thank you for your help , I feel a little stronger about going now, I hope your husband is getting the help he needs Katie , I do think of you both often and hope things will soon improve

Take care much love to you both xx

[Greengal314]

hi Sophia, try and focus on facts … what you do know.

What is your bloodwork results? Did you just have the one fibroscan? Have or will there be any additional follow up scans? What changes in exercise or diet have you made? Have you lost any weight or been monitoring your blood pressure?

I know you have been watching your diet and exercising. Maybe make a list of all of things you have been doing in a positive direction since the last check up. Also, make a list of questions to ask the doctor.

Instead of thinking of this as an appointment, think of it as an opportunity 🙂 for the doctor’s undivided attention to address any specific questions you have.

Don’t overwhelm yourself. One step at a time is the only way lasting progress is made. Give yourself some credit.

❤️

[Sophia1968 in reply to Greengal314]

Aww bless you , thank you so much for this reality check, you are right I need to focus on the good as well, my blood work is normal apart from ast being higher than alt, yes I only had the one fibro scan, I had lost 4.5 stone but have put half a stone on since having Covid; ( I lost my taste and was drawn to all the naughty sweet stuff ) my plan from Sunday is to get back on track and start swimming again and walking more, you are right it’s an opportunity to sort things once and for all, I can’t carry on wondering and getting anxious, I need to kvow what is what and going forward do what needs to be done, really appreciate your message thank you

Take care my lovely xx

[BritishLiverTrust11 Moderator]

Hello

In addition to the suggestions from members of the forum, here is a link to some information on our website about preparing for appointments, including questions to ask your doctor, which you may find helpful.

britishlivertrust.org.uk/in...

Best wishes,

British Liver Trust

[Sophia1968 in reply to BritishLiverTrust11]

Thank you very much, I will look at this info now, much appreciated xx

[Etymolog]

Hi , I did feel exactly the same but they’re the experts - I too was scared but I can honestly say I feel so much better and happier than I have in ages . It’ll be worth it. Maybe also ask if they can recommend anyone or anything to help with your anxiety. X

[Sophia1968 in reply to Etymolog]

Thanks hun, I’m glad it made you feel better, I’m sure I will too once I have been, as for the anxiety it only happens when I worry about health etc, on the whole I’m very in control with my emotions, I really would not want anxiety pills unless absolutely necessary, but thank you for your reply, it’s much appreciated my lovely xx

[Etymolog in reply to Sophia1968]

Oh yes I wasn’t suggesting any medication at all just help talking etc . Take care look after yourself you are not alone x

Lucy x

[Sophia1968 in reply to Etymolog]

Aww bless you, thanks lucy, it really helps having people who understand, it means a lot, take care I will update you after my appointment xx

[Roy1955]

How's the weight loss going?Your prior tests indicated cirrhosis and fatty liver.

This sounds more like the 6 month check up appointment than a new referral, once diagnosed with liver "problems" we get them every 6 months.

Not much happens, it's just "how are you" another appointment for bloods, another appointment for scans, if your obese still it might be MRI or CT instead of jelly on the belly.

That does not mean they suspect anything it's just that ultrasound is not much use on us chubbys😅.

Advice/treatment will probably be lose weight and see you in 6 months.

[Sophia1968 in reply to Roy1955]

Thanks Roy, that did make me laugh about ultrasound not being much use on us chubby’s ha ha….. this actually was a referral, my argument was that I had no follow up after the scan showed severe liver impairment , I asked for fibro scan and was sent there and received a read of 21.5 then was left alone with no follow up at all, I asked my doc to refer me back to them after the score and all she said was they will only do blood tests like she had, it was this other doc who finally agreed to refer me , this is why I’m a bit worried as it will be the first appointment really, is there any way the fibro score could have been false high because my bmi was high and is it possible that severe liver impairment could mean severely fatty and not cirrohtic ? I’m just living in hope really, as for the weight loss I did lose 4 stone and 8 pounds but stupidly went off the rails and put on 8 pounds, im now planning to get back on track to lose more weight and up the exercise again, I worry my bloods are normal and can be with cirrohsis , but surely they would have been sky high at some point, mine never have been, I do appreciate that these are questions for the gastro and not for you, but you are a normal person going through the same things so I just like to get your opinion, and I kvow you say it as it is lol, hope you are ok Roy, take care and thank you xx

[Millie09]

Hi Sophia, Bless you.. how are you other than fretting over your gastro appt .

As everyone who has kindly replied, don't get worrying, Katie already mentioned about jotting down any questions you may have at appt and also for taking any notes etc

I always worried at each liver check up to start with , I think after all these years I'm now used to it..but I won't lie , I'm always hoping that nothing untoward has changed, I wouldn't be human if I didn't.

Hope all goes well hun

Linda xx

[Sophia1968 in reply to Millie09]

Hi Linda, good to hear from you hun, yes Katie always gives such good advice, I will definitely be taking down notes whilst there, I’m ok other than fretting as you say, hope you are good, how are the puss cats xx

[Millie09 in reply to Sophia1968]

Yes Katie always very knowledgeable. I'm sure you will be fine .. you must let us know how you get on

Oh puddy cats 🐈 😻 are doing good thank you for asking xx

[Sophia1968 in reply to Millie09]

I will definitely update you hun, and yes Katie knows her stuff, everyone is very helpful on here xx

[Sophia1968 in reply to Millie09]

I’m so glad the puddy cats are doing good bless them xx

[Millie09 in reply to Sophia1968]

Thank you 😊. Yes they are doing well , keep me posted hun xx

[Sophia1968 in reply to Millie09]

I will do Linda, take care lovely xx