Hi all. I am new on the site but have been told by hospital consultant that i have a fatty liver, and need some advice as i am getting concerned, I had a major bleed 10 months ago which came out of the blue and ended up i hospital for10 days and had varices banding while there, I was discharged in a stable condition but was very weak due to the loss of blood. Since then i have had 4 gastrosphy / 1 endoscopy/ 2 contrast CTscans and a fibroscan , I have also had numerous blood test and although my bloods have returned to normal with a reading of 138 my iron levels are consistantly low at around 18, My problem is twofold
1. There is no communication between my GP and my consultant and myself and therefore I have no idea as to the results of these scans /tests and do not know to what extent my fatty liver has deteriated and any treatment plan, Ihave had 2 appointments with my consultant cancelled due to covid.
2 My GP advises to take iron supplement to boost iron levels but the consultant says do not take iron supplements at all
What should I do as my treatment in hospital was great and my GP is great and therefore do not want to complain, but I need to know the extent of my situation and is there any hope for the future,
thankyou
KEITH
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If you study the clinical course of NAFLD, Varices due to NAFLD are not super common. Is your diagnosis Alcohol related, or truly just NAFLD due to diet/ weight?
Hi Keith, do you have contact details for your consultant? It sounds like you need a consultation to get your diagnosis absolutely confirmed. Bleeding from varices is usually a symptom of portal hypertension which means your liver is more damaged that merely at the fatty liver stage. You perhaps need to chase this to get an appointment as soon as you can.
They need to establish why you have such low iron levels, if it is anaemia then often they will prescribe iron tablets (my hubby who has cirrhosis had to have a course of iron prescribed by his liver specialist wehn he had iron deficient anaemia). If it isn't anaemia do you still have a slow bleed somewhere.
All of this needs checking and if you can get in touch with your consultant via his/her secretary you should do so and see if you can get an appointment. You need a care plan in place and a confirmation of your diagnosis.
Make a list of questions you want to ask so you can make the most of that phone appointment - it's not too far away at least.
You might find the BLT page with the patient charter of use for useful Q&A and minimum standard of care you should receive. You definitely want your diagnosis confirmed.
If your liver has reached the cirrhosis stage this could explain your anaemia. Sometimes when the liver reaches this stage other conditions start to appear. In some people there can be more iron in a damaged liver than in a healthy one, while with some people the opposite can occur and the person becomes anaemic.
As the liver becomes cirrhotic, insulin has trouble getting through to the liver. It is believed that insulin is the signal that tells the liver to stop dumping sugar into the blood system. If this signal can't get through the liver continues to dump sugar. This then can lead to Type 2 diabetes.
It would be unfair to start speculating of what could be going on, and you need answers from your consultant. If this consultant is a gastroenterologist, ask to be referred to a hepatologist.
Something is obviously upsetting your liver, so like Katie said, start to make a list of questions, and don't be frightened to speak out.
For Iron deficiency anaemia, the normal protocol is to take iron tablets. However, they can colour the stools, giving the impression that you are bleeding internally, when you are not. So your GP is prescribing the usual tablets that are prescribed for most people, who have never suffered a bleed. However, becasue it is so soon after the bleed (10 months is not a long time, relatively speaking in medicine world), then your Consultant wants to be cautious at the moment and is advising against iron tablets for this reason.
It is worth asking if they are prepared to give you an iron infusion, since you will not be able to top up your iron levels enough with diet.
Hello and welcome! I have experienced what you are experiencing. GP orders scan Consultant never sees it and so it goes on. I took full control and became my best healthcare advocate. I requested all scan and blood results. I have a file with all copies,dates I’ve spoken to consultant/GP,questions I’ve asked and need to ask. Everything is cross referenced. I ask questions if I don’t understand. My experience is that when it comes to my liver I go straight to my consultant. Gp’s at my surgery tend to give general advice as I would expect. I had my hospital file sent to me for my records. I track my blood results and put all my rough upcoming scans/bloods/endoscopy in my diary. I have found things that have been missed. My experience is that GP and Consultants don’t communicate. I now avoid google for anything liver related. There is a wealth of knowledge, experience and support on here. The helpline too is great. The liver nurses are lovely. I always think, if you want to know anything, you go to the nurses!!!! Best of luck!!!
If you know who your consultant is you can contact their secretary and ask if they can send you out a copy of the last couple of letters back to your gp. When you go to clinics they should offer you this option when you book in, but if your diagnosis gas been as an inpatient then clearly that step would be missed. They are usually very helpful.
Hi, your story sounds exactly like mine, first and only symptom of liver disease I had was vomiting up nearly all the blood in my body causing a stroke, 3 days unconscious in ICU, took me months to recover. Fortunately I was followed up by the liver clinic. As you have had further gastroscopies, scans you are still on their radar. Do you have a discharge letter from the hospital because it will have your consultants name on. Contact the hospital and ask to speak to consultants Secretary and hopefully they can arrange an appointment either face to face or by phone at the liver clinic. After my bleed it took several years to come up with diagnosis of NASH as all my bloods, scans, biopsies were normal I just had varicies.
I had major bleed 3 years ago while in hospital and they put me in a induced coma for over a week and i had endoscopy and banding and kept me in hospital for nearl 5 months cannot understand why they discharged you so early because this sound not right i would go see another consultant about this
I had a bleed a few years ago and was discharged 2 days afterwards. Obviously looking at other peoples' timescales can be misleading. It really does depend on the individual, how they responded to banding & how much blood (presumably) was lost in the first place. There will also be other factors to consider, such as the general health prior to the bleed, other co-morbidities etc etc I do hope you are able to get answers.
The only comforting thing I can say is that if they were alarmed, they probably would have contacted you by now. However, be persistent in trying to get hold of the Consultant just for clarity & ask what the plan is. Once you know what their plan is, then you can have a clearer picture as to whether you are missing out on appointments etc. Wishing you all the best.
If you are in the UK, you could call the British Liver Trust nurse team on the helpline on 0800 652 7330 Mon to Fri 10am to 3pm and we can have a chat.
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