Follow Up With Dr

[Sophia1968]

I finally saw my Dr yesterday regarding the report from my fibroscan in April , (quick recap: 360cap/21.5kpa….bmi 40…..gastro advised bariatric surgery and nothing else) I told my dr that there is no way I would have major surgery and put anaesthetic through my already bad liver, she agreed and said carry on as I am , keep losing the weight and exercise (lost 3 stone 4 more to go) I asked her to refer me to hepatology because I assume they need to see for sure if I have cirrohsis and not assume it’s the weight showing high figures (esp as my scan showed severe liver impairment) but my dr said hep won’t do anything apart from probably re scan me in 6 months, she said to me “try not to worry too much about your liver” ….. I am happy to leave it, get the weight off and be re scanned in six months then go from there, because I’m enjoying my life and swimming etc and head in the sand keeps me strong, if they tell me I’m definitely cirrotic I’m scared I will think what’s the point and give up…. I’m strict with my diet and exercise and I don’t want to lose that, hope this makes sense, but my question is, is it safe to do this, or should I have been referred for checks in case I have varices etc…… I also asked for a referral to a dietician which she agreed would help me, it’s hard for me juggling diebetes with liver disease along with the wdeia (rare wheat allergy) …. Please can anyone advice me whether it will be ok to carry on like this and re check everything in 6 months when most of the weight will be off, or is it like playing Russian roulette by not knowing for sure, thank you for any help anyone can offer xx

[AnxiousPete]

If it was me I would push for a Hep referral for a proper diagnosis Sophia especially with those Fibroscan scores tbat a consultsnt is far better experienced to interpret thdn a GP. I would want to know if I had portal hypertension and varices. Also once in the system you will get the monitoring and advice you need. Good luck.

[Sophia1968 in reply to AnxiousPete]

thanks for your reply Pete, this is all my thinking as well In my logical side of the brain, I guess I could see another dr at my practice to see what she thinks, but I don’t want to look like I have gone behind my drs back, I know I should not think like that because I need to put my health first, but I do have a good relationship with her and usually I trust her totally, but in the back of my mind , I know you are right 😥 xx

[Millie09]

Hi 👋 Sophia First off well done on your weight loss!! Thats amazing and I'm sure that will have a good impact on your next fibroscan .. and also your liver

I'm surprised on your drs say so on no hepatologist care ? I really would push for this ,yes we have ultrasound scans bloods taken etc but they can pick up on anything that could possibly be a red flag .

As you may well know anyone with cirrhosis is deemed high risk for liver cancer .

I know you've had no direct diagnosis for cirrhosis but going by your reads there is good reason to be taken under the wings of a liver consultant.

see your GP again hun , push for the referral

Good luck

Linda xx

[Sophia1968 in reply to Millie09]

hi Linda, thank you so much for your praise and your advice, it is all very much appreciated , I hope you are a bit more settled in your new home now my lovely and feel better now xx

[Millie09 in reply to Sophia1968]

Hi 👋 Sophia, Your most welcome ☺️.

It was just advice that I thought may be helpful to you hun ..

I'm much better now I have moved love my new home 🏡.. and I'm able to decorate and do whatever as long as I don't knock down any walls lol .. still under bham healthy minds .. I do hope you find the answers your looking for xx

[Sophia1968 in reply to Millie09]

Thank you my little love, your advice is right tbh , but I have gone from being petrified to denial in a way, the dr plays it down so that makes me think I won’t worry then, I’m just confused, I don’t kvow what I should or shouldn’t do anymore, what with that and my other conditions I just get fed up with it all….. I’m no so glad you are settling in , you sound so much happier hun, the stress has gone and it really shows, im so pleased you love your new home , im sure the puss cats do as well xx

[Millie09 in reply to Sophia1968]

Thank you Sophia, most kind of you ..My hepatologist is the same , if I bombard him with questions or I raise my concerns about any blood test results that aren't right he just says everything is fine ,so then that makes me think its all in my head ,so I can relate to what you say ,but you shouldn't be feeling this way if you have concerns you really should have your GP listen to you and not brush things under the carpet 🤨. I'm sorry your going through so much hun ,I wished I could help,

Have you spoken to the BLT nurses at all ? I do know they are very helpful.

My cats are still living indoors , I won't let them out lol , but they have so much room they are very happy 😊

[Sophia1968 in reply to Millie09]

thank you Linda, no I have not spoken to the nurses on here, I keep putting that off as well, 🙄, there is just no helping me is there lol, I’m so glad that your cats are happy, cos change can really stress them can’t it, glad all worked out for the best with you all xx

[Millie09 in reply to Sophia1968]

Thank you Sophia Yes I would give the nurses a call , I have not done so personally but i know others on here have and they have said how good they were ..

I think my cats were used to me moving so much lol , they are used to it all now 😅 xx

[Sophia1968 in reply to Millie09]

aww bless your little cats hun, im glad they are chilled and go with the flow, I need to be more like them lol xx

[Kristian]

For me, I wouldn't overly worry. Your GP is pretty much correct. Getting a referral to you local hospital really will just normally mean you'll see a nother gastro doc anyway, and yeah, all that will normally happen is they'll take blood and do an ultrasound. So you'll probably not be any more the wiser anyway. By the way, whilst gastroenterologists aren't generally specifically liver experts, conditions of the liver is part of their specialist training, so they do know enough to manage the condition. Additionally, liver disease tends to progress pretty slowly. So if your gp does some further monitoring and it is still high then its probably the right time to seek that further referral.

One thing I would suggest is ask your gp to arrange for an ultrasound if you dont have ine already. If cirrhosis is present then its likely to show up. That could then help determine if a referral is necessary to.

Good luck.

[AnxiousPete in reply to Kristian]

I disagree Kristian. A gastro consultant would probably recommend an upper GI gastroscopy. If there is portal hypertension and varices it is very imprtant to know as medication might be required. I don't think US can differentiate between reversible fibrosis and cirrhosis.

[Kristian in reply to AnxiousPete]

Gastrostoscopy may indeed be done at some point thats correct. However, they'd probably use the ultrasound first to see if it was needed. Use the US to determine if the liver and or spleen were enlarged to suggest whether portal hypertension was present. If yes, then they'd probably get the camera down, lol. Ultrasound can actually be used to show if cirrhosis is present. There's a few tell tale signs that could indicate if cirrhosis was present. A nodular surface texture for example being one. But you are right, pre-cirrosis fibrosis may well be more difficult for it to detect. But you may still see enlargement. I know I did with mine.

[Sophia1968 in reply to Kristian]

hi Kristian, thanks for your reply hun, this is the way I would like to think is right, cos I do prefer to just carry on and forget it all, and even if it’s the wrong attitude I honestly don’t think I will get anywhere with the dr anyway , they just don’t seem to think it’s a problem unless symptoms are showing 🤷‍♀️, I have had ultra sound and ct scan and was told I have severe liver impairment , I assumed that meant my liver is in a bad way but not cirrohsis, but someone said that means cirrohsis and that it would not show on the scans , even my dr said cirrohsis would show on a scan but I think she is wrong after learning things on here, my bloods are fine but she will redo them in three months and scan me again in 6 months xx

[Kristian in reply to Sophia1968]

These days it's more common to see early stage liver disease managed in primary care anyway. Your own gp can always get an opinion from the local hospital specialists if its needed any way.I think the key thing is that someone is keeping an eye on you. Thats most important. Its also sensible not to ignore it. Acknowledge its there and you can then be ready for any potential trip ups that may pop up along the way. Be informed of what to look out for and what to do if they happen is really helpful. But you are already doing the right things anyway. So just keep doing that and see how things change. If they don't improve, then do get that referral. With further tests in 3 months and another scan in 6, it's probably what you'd get if referred any way.

I wouldn't take too much store by the words used in medical correspondence, lol. They can use several phrases to mean exactly the same thing. But, if cirrhosis was present then it would usually say so. And yes, as I've just mentioned in response to Pete, there are some tell tale signs that ultrasound can pick.up that would indicate if cirrhosis was present. So your doctor is being straight with you on that point.

Good luck with your journey and, as the folks at NHS 111 would say, if things get worse do seek some further medical attention.

[Sophia1968 in reply to Kristian]

thank you so much hun, I will keep an eye and inform the dr of any changes, and once the weight is off if my scans are still bad then I will not take no for an answer, as far as I kvow there was no ascites on the scan and fall bladder was nomal, I think the aorta was nomal which is weird cos I thought that is the big heart vein , I didn’t think that showed on the scan , my dr said cirrohsis would show as shrivelled on the scan, but again I have no idea really lol xx thank you so much for your help xx

[Kristian in reply to Sophia1968]

Yeah, there is commonly some size changes but it can vary. Some times you can see one lobe bigger than the other. There's also textural changes they can see too and can also see the size of things like the portal vein etc.

[Sophia1968 in reply to Kristian]

to be honest , this was all said even before my scan, once the scan was done everyone seemed to avoid telling me what it actually said, my diebetic nurse said she could not understand it , when I asked the doctor if it was bad she just nodded and said yes, but didn’t tell me any details, i know I should have pushed then but I was too scared to hear the truth , then the fibro scan was done and the 21.5 sent me into a panic ….. I know I should really be firm and say what does it all say and mean and what are you going to do about it, at first I was strong and wanted answers but now I seem to have shrunk into a kind of acceptance of leaving it , as you say different terminology is used, but surely if my doc was really worried she would do something or do they really not understand the depth or importance of other tests 🤦‍♀️ …. I know I sound confused cos one minute I’m positive and happy to leave things then the next im a bit panicky like this …. I know I drive everyone nuts on here as well but honestly without you all I would feel so lost xx

[AnxiousPete in reply to Sophia1968]

Hi Sophia you don't drive anyone nuts and people on here understand what you're going through and can empathise totally. Your weight loss and lifestyle changes are real achievements you should be proud of. If your GP said it was bad I don't understand why they would not refer you to a consultant who is far better placed to explain and to offer diagnosis. My hepatologist mentioned that in my area they are trying to raise awareness of 'hidden' liver disease among primary care doctors and nurses to increase early referrals as slightly abnormal LFTs are often not acted upon. When I requested my medical history after my diagnosis, I found that I had not had a completely normal LFT for over 18 months (in 2 GP surgeries). but it was marked no action . I suspect because I reported alcohol consumption above recommended levels and my obesity. Have you had full liver panel blood tests including billirubin creatinine sodium ALT etc ? These were requested by the gastro consultant before I saw the hepatologist. I know there's a part of you that you've said want to see how things go and that's perfectly understandable. I'm the opposite with health anxiety. I want to know as much as possible and challenge anything that isn't clear or I don't understand. We're all different and find our own paths through these challenges. Good luck and keep going. Everything you're doing can only be helpful.

[Sophia1968 in reply to AnxiousPete]

hello Pete, thank you for saying I’m not driving you all nuts, that was lovely of you , I do believe different areas prioritise differently , sadly here in Kent I think you have to literally be at deaths door, there just seems so much lack of help or care these days, my last results in may off top of my head were albumin 42 , alt 20 , phosphates65, platelets 229, ggt 23 ast 20 billiRubin 9 creatinine 48 and sodium 140 so all normal, platelets dropped from the test before though, they were 265….. my last ferritin test in oct last year was 110 but I’m not sure if they are better to be lower as my mum and friend are both only 30….I too do have health anxiety and usually I want the inns and out but mentally after all my issues the past few years, cancer, rare allergy, diegetes, etc etc I guess I just want to put the liver to one side, but I do kbow deep down I should be checked…. I really do appreciate all your help my lovely xx I do worry about my haemoglobin cos that is above normal so is hemocrit etc and it gets higher each time, but again no one seems bothered only me xx

[Kristian in reply to Sophia1968]

It's perfectly OK to feel that way. And don't worry either about ever asking questions about results. It's difficult for doctors sometimes to know how much people want to know. Pete also makes a valid point on the blood tests too. I would imagine bilirubin and ALT would be done as standard, but its also useful to have an eye of others, Sodium and Albumin are two that are very appropriate to show actual liver function, if those are in the normal ranges then even with some liver damage it can give a hint that the liver is still working pretty well. Other useful ones would be a full blood count so you can see if your heamaglobin and platelets are being affected or if you have a bit of aneamia. All of which can be common in liver disease. Those are the tests the hospital seemed to do as standard with me anyway.

[Sophia1968 in reply to Kristian]

thank you Kristian , you are so informative, my liver blood results were all normal but I do worry as my haemoglobin is always high and continues to rise each time, high haemocrit as well, I did mention it to doc but again she did not seem worried, I never realised the sodium would be affected, I guess that would be salt and asites? So would sodium be high or low hun xx

[Kristian in reply to Sophia1968]

The values would tend to reduce not increase. So as disease progresses it would be more common to see a lower than normal result. Even with quite significant scarring albumin and sodium can be within normal limits. Thats because even with fairly extensive scarring the liver can still work pretty well. The first things that generally show as abnormal would be the standard stuff: ALT, Bilirubin, ALP (sometimes). As the disease progresses, then the blood counts tend to become more affected, thats the Heamaglobin and Platelet counts normally. You may also see some signs of anemia too. It's only really in the latter stages where the liver is struggling do the albumin and sodium levels tend to drop. From a scans perspective, in the early days you may see some enlargement of the liver on ultrasound, as scarring increases you may also start to see surface texture changes in addition, often referred to as a "nodular" texture. You may also see an enlargement in the spleen too if portal hypertension starts to develop. As liver disease progresses further the imaging changes can vary. If one side of the liver is badly scarred the other side can grow to compensate, this can be seen on US. It may also be the case the the whole liver may shrink. US can also show how the blood is flowing through the liver too. Of course ultrasound can also see if there are things inside the liver too, fatter deposits being the obvious one, but it can also pick up cysts and other lesions too.Hope thats a further helpful bit of narrative. Of course there's always chances that patterns can change, and not everyone will experience all those findings, at least from an imaging perspective anyway. But that was the experience I had and seems to be the more usual progress as far as I have been able to gleen.

[Onesmallstep1969]

Congratulations Sophia on your weight loss! That helps everything, including the liver.

Sounds as though you are not having any outward symptoms of liver disease. You're not feeling tired, you're not bloated from ascites, you don't have upper right quadrant pain, things like that. Maybe that's why your doctor is feeling relaxed about your case.

Many people are not aware of this but people with cirrhosis usually cannot exercise strenuously. There are exceptions of course but the overwhelming number of cirrhotics just can't exercise strenuously. The fact that you're exercising so hard and regularly would indicate that your liver is functioning well. It doesn't mean that your liver is perfect because of course it's not but it doesn't mean that you're not in a terrible way.

The Fibroscan score is 21 which is high. Depending on the cause of the liver issue, it could be either advanced fibrosis (F3) or cirrhosis (F4). But even then, all is not lost. Both fibrosis and cirrhosis are reversible, though cirrhosis was once believed to be irreversible. Once you eliminate the cause of the cirrhosis, the liver starts to heal and, so long as the damage is not too far along, it starts to regenerate and heal itself.

So, good for you, keep up the exercise, eat plenty of vegetables, and carry on.

[Sophia1968 in reply to Onesmallstep1969]

thank you so much hun for your very up lifting and positive post, no I didn’t realise that people with cirrohsis had struggles with exercise , unless it was decompensated, esp after hearing about the lady on here who had no idea and had jogged five miles the day before her diagnosis, then there is Katie’s husband as well who was always totally fit before and even after , im not a strong swimmer at all, I just do a bit here and there but I’m constantly moving in the water and hope intime to get stronger , also because I’m not being checked how do I know I have eliminated the problem, as I don’t know the cause and just assume it’s caused by fatty liver, this all goes back to Pete and Millys replies, saying I should know what’s going on, I did request the liver cancer blood test AFP to be done and also the ggt and ast and all came back in the normal brackets although prob mid to high normal , thank you so much for your reply and for saying I am doing well , posts like this do give me hope so thank you hun xx

[AnxiousPete in reply to Sophia1968]

Hi again - just saw this and the advice on exercise I believe, relates to possible impact on portal hypertension. I heard tha strenuous exercise can raise portal vein blood pressure and if you have varices this can exacerbate them. I have both but the varices are lowest grade. I asked my hepatologist should I be careful about exercise and he said I could do what I felt able to and not to worry. I'm not planning on running any marathons at my age anyway but I qm doing 90k plus steps per week

[Roy1955 in reply to AnxiousPete]

It does not count if you tie your step meter to your cat😜

[Sophia1968 in reply to AnxiousPete]

wow Pete 90k steps per week is amazing, well done you…. As for the step ometre , I did not think of putting it on my cat, I have now, thanks for the tip 😂😂😂 xx

[Greengal314]

Hi Sophia, I’m so happy for you that you are feeling good and getting things in order for yourself. It’s very admirable that you are taking such an energetic and informed initiative to your health. 😁

If you’re feeling well and changing your diet and exercise routine, these will positively affect any future ultrasounds or EGDs. I’d let it ride and wait a few months, if that is the recommendation. Time is on your side anyway to get any firm results This is a dynamic process and changing.

If you’re really concerned about portal hypertension you can buy a blood pressure monitor that includes heart rate That way you can monitor them to make sure they aren’t high. The whole thing with portal hypertension control is reducing the blood pressure and heart rate anyway, so if yours is already good it would be less concerning. Normal blood pressure ranges can be found online . My hepatologist said the ideal heart beats per minute are 55-65. (FYI- If you did have an EGD and find varices, the medication prescribed is to reduce/control the heart rate)

Just a thought. Nonetheless, personally I would continue the diet and exercise and wait for the doctor’s appointment and advice. The blood pressure monitor is a good tool to have at home regardless whether you have liver disease or not.

I hope this helps put your mind at ease. Great job!

[AnxiousPete in reply to Greengal314]

I don't believe this is correct. Blood pressure monitors measure ordinary blood pressure but not in the portal vein sadly. My hepatologist said that the medication recommended is beta blockers which do block adrenaline and reduce heart activity.

[Greengal314 in reply to AnxiousPete]

yes I agree. Blood pressure measures regular blood pressure. Not portal. Sadly, I agree.

The beta blockers reduce the heart rate and help regulate the sympathetic/parasympathetic nerve system. Strengthen the calming one and dampen the reactive one (adrenaline).

You can check your heart rate with a blood pressure monitor. At least mine has that in addition to regular blood pressure. My hepatologist said the target heart rate is 55-65 bpm.

Sorry for any confusion.

My doctor asked me to check both twice a day for 2 weeks (and keep a log), for my appointment in august. My blood pressure is not evenly slightly high.

I think she is mainly interested in my heart rate.

[Greengal314]

I just recalled that I believe your platelets are in normal range.? If that’s the case, there is less concern regarding the portal hypertension.

If you want to get a blood pressure monitor might be a good idea for you to monitor your general health. 😄. Just a suggestion.

Have a great day!

[andy-g]

I think you absolutely should see a hepatologist, not losing the weight is usually not a problem with cirrhosis, I lost 35 kilos and couldn't keep the weight on, the sooner you know exactly what the situation is the better. I am 6 years past transplant .

[Herman7275]

Sophia I have had diabetes for 35yrs and I have a fatty liver F-2 To F-3 moderate fibrosis!! Because of my diabetes!! My hep dr gave me 2 choices the bariactrics surgery or loose 125lbs do it their way exercise and keep it off. I am still loosing and staying on low carbohydrates diet!! I have lost65lbs and they test my liver every September with a fibroscan and this had been since August of 2019. Yes we need to always try to stay as healthy and care about ourselves!!! I wouldn't listen to much to that Dr can you go around her and get your own hepitoligist. If I can give you some help with my diet let me know!!