Feel in limbo

[0range5520]

I was diagnosed with NAFLD and cirrhosis early this year. Told I would need a Dexta scan and Endoscopy together with an Ultra sound before my next virtual appointment in Sept. I had the Dexta scan in April(not had any results), ultra sound early Sept(not had any results) no appointment for Endoscopy. A text from the hospital saying sorry for the delay in not having an appointment, did I still want one.

I am now suffering with intense, itching, joint pain and fatigue. Contacted Dr with these symptoms and an Advanced Nurse Practitioner rang back and has prescribed antihistamines. I had mentioned that over the counter ones hadn’t worked and I am finding it difficult doing an extremely stressful job.I had a blood test in Sept, the results did go back to GP. There was low platelets and raised GGT. I was asked how much I alcohol I drank, even though I have never drank and my bmi is within range. All this is on my records

I understand there is pressure within surgeries and hospitals but I just feel that I have been left to struggle on my own, waiting for results with no sign of an appointment and worsening symptoms.

[Hexamon]

Hi. This seems to be a common theme. I myself was diagnosed in Feb this year with cirrhosis after a Fibroscan on 28 and connected bloods. I’ve just had the enhanced ultrasound that ruled out any dangers from a 9mm lesion. I’ve had the bone scan and endoscopy and everything was clear thankfully. I’m also in a stressful job and having no complete answers over 8 months wasn’t easy.

The best advice I could give you is the chase the secretaries and nurses. They are generally brilliant and can push things along.

You’ll also need to research your bood results and lifestyle changes that can help your position.

Good luck. The good thing is you’re not alone.

[PutneyGirl]

Your results are your personal information. Contact PALS and if no joy within 10 days raise a subject access data request which is your legal entitlement.

[AnxiousPete]

So sorry to hear about this. Under NICE guidelines I'm pretty sure you should by now have had an appointment with a consultant (hepatolgist if you local hospital has one). You should have had full liver proile of blood tests and probably a fibroscan to identify MELD/UKELD scores and stage the cirrhosis . I would chase the GP and hospital for your test results and consultent appointment. Meanwhile speak to the BLT nurses on the helpline. Good luck and I hope you get answers soon

[Ericabear]

Cannot imagine your worry and I have nothing I can offer to help you find your answers. My husband suffered with severe itching and was prescribed Cholestyramine which helped him. . Maybe this is something you could suggest to your GP to see if it helps you. Good luck.