Struggling to get diagnosed and told no to being referred to a liver clinic.

[Blue-shade]

Hi I am new here and have been reading all the posts I can over the last few days.

I really need help and my GP flat out refuses to offer any because the last blood test results were “normal” I have asked multiple times to have online access to my results and met with silence.

Yesterday I went on ASK my GP and listed all the symptoms I am experiencing, was told they are related to my heart condition. I saw my cardiologist a few weeks ago and he signed me off for six months. At the time a few weeks back although I had finger nail changes I was feeling fine , so did not mention my liver concerns. Just before that I had had a check up for my diabetes, I talked to the nurse and had her look at my nails, she looked on her computer “no problem and liver is fine”

Few years ago I was put on Amiodarone (sorry if that’s spelt wrongly) by a cardiologist after an episode, unfortunately I was left on it for 8 years or more and not told it was extremely toxic to my liver. I changed cardiologist when found out that he had no idea he had put me on it and forgotten. The first thing my new doctor did was take me off it, which took 12 weeks to do to avoid withdrawals.

I now am sure I have liver failure, that has come on and is getting worse over the last months. I don’t drink or smoke but in the past I did both to excess, last few years I have been abstinent for up to a year with occasional drinks out with friends etc. Since lockdown I have not drunk at all.

Here is what I am experiencing now. Finger and Toe nails turned white and have a red brown line at the end, if left to grow my fingernails grow around the end of my fingers. Palms of my hands have red blotches, I also have Renaulds syndrome and my hands turn blue in the cold. loosing weight but stomach getting heavier and hanging down, I am and always have been heavy but now I am a huge torso with spindly arms and legs. lost my appetite and eating mostly meal replacement drinks and salad but it’s hard work to get interested in food. I feel a bit nauseous but have not thrown up at all.

I feel generally un well, no energy, brain is foggy and concentration hopeless. Very stressed and scared, not sleeping more than 3 or 4 hours a night. Constant irritating pain in my right side, across my chest and in my ribs at the back. Seem to have a low grade fever that comes and goes along with a wierd hot burning sensation in my abdomen.

I wonder why is my GP flat out refusing to help and what can I do?

[Richard-Allen]

Hello Blue-shade and welcome.

Do you by any chance have and other medical conditions, or mental health concerns?

Sadly many GP's tend put too much faith in the basic liver function test (these are my own personal beliefs). A person can have some scaring of the liver, but still have normal blood test results.

You obviously need to be reassured that you liver is fine. I would go back to your GP and ask to have a ELF blood test (Enhanced Liver Fibrosis) this will show if there is any fibrosis on the liver, or if the liver is at the "Fatty Liver" stage. Now, if the results of this test all come back as being normal. You'll have to come to terms and accept that your liver is fine and accept it.

Based upon the outcome of this test, further tests or scans maybe required. A fibroscan for example with measure how stiff or supple your liver is.

If your GP refuses to allow you to have this ELF test, I would insist that a note be made on your medical record and the reasons given as to why your request is being denied. If all this fails, I'd shop around for another medical practice.

Good Luck.

Richard.

[Blue-shade in reply to Richard-Allen]

Thanks for the reply. I have heart and blood pressure issues, diabetes, I do suffer from anxiety badly but only take valerian root to control it and melatonin to help me sleep. Must admit neither is helping right now as I am so strung out over these problems, exasperated no doubt by fighting to taken seriously.

[Richard-Allen in reply to Blue-shade]

Is your doctor aware that you are taking these supplements, and do they know of the quantities you are taking? I ask this because I can see that Valerian Root can be particularly dangerous to your liver: ncbi.nlm.nih.gov/books/NBK5....

Melatonin might be of concern as I understand that this can alter the bodies body clock. The Liver has it's own body clock as it is still working when we are asleep. This article may help to explain this: onlinelibrary.wiley.com/doi...

I also understand that Melatonin can increase a persons depression and could make things a lot worse: verywellhealth.com/melatoni...

Please speak to your doctor about all the drugs you are taking. Certain drugs can be more harmful than others. In addition to this, while some drugs are individually safe to take and may not cause any harm to the liver. Taking a cocktail of different drugs all at the same time, could be quite toxic by the time they hit the liver. So caution maybe needed here.

Once again, good luck.

Richard

[Blue-shade in reply to Richard-Allen]

Thank you so much Richard I will stop them immediately. My Doctor has no idea, mostly because at the surgery I attend you never see the same doctor twice. Mostly you only get to see a nurse and only then if it’s deemed to be worthy by them.

On the ask my GP app you cannot choose to speak to a Doctor only staff or a nurse.

I had no idea Melatonin could increase depression and I am very depressed right now.

[deanw41]

Change Dr. You are paying for a service. I just changed my GP because she was not interested in my well being. Now I have a GP who does. You know your body more than any Dr, so you keep pushing until you get results. Document everything, ask questions, be your own health care advocate. Don’t get into this parent/child relationship with medical professionals, their not doing you a favour, their paid to look after you. Good luck.

[Blue-shade in reply to deanw41]

Thank you for your replies.My wife will change practises on Monday as we talked about it just now.

I forgot to mention I paid for a private ultrasound during lockdown but it was inconclusive and was really more like a private baby scan clinic in a shopping parade.

I have booked a consultation with a private hospital in Nottingham (not my first choice as it’s 2 hours away) but I am very very worried.

This morning after not sleeping hardly at all last night, I have woken up to even more bloating and pain.

[deanw41 in reply to Blue-shade]

I went to a GP with ascites and was told it was constipation. I was actually in liver failure. I went to A&E in the end, that’s when I got diagnosed.

[Blue-shade in reply to deanw41]

I was thinking of that also but have never been to an A&E the thought of it scares me. I have constipation now also my GP sent me for a Colonoscopy, it was found I have some very small Polyps but the did not remove them as I was told to continue taking clopidogril which I have been on for years.

After that there was no follow up regarding the constipation and change in bowl movements.

[deanw41]

More scary not finding out what’s wrong with you.

[Blue-shade in reply to deanw41]

I agree with you, I will try again to get seen on Monday and if things worsen by then I will go to A&E

[deanw41 in reply to Blue-shade]

Good luck mate.

[Blue-shade in reply to deanw41]

Thank you