What has your journey been like through the healthcare system? Have you been managed by different specialists - GP/PCP, hepatologist etc? Have you been referred specifically to a specialist?
What type of doctor has been taking c... - Living with Fatty...
What type of doctor has been taking care of you?
Written by
HelenHU
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32 Replies
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Pain consultant noticed risk g liver enzymes on 2 weekly blood tests for psoriatic arthritis.
Rhematologist referred me to hepatologist.
Had liver scan and fobriscan booked
It was a gastroenterologist who first saw the state of my liver during gall bladder surgery.
He referred me to the hepatologist who has directed my care along with my GP since.
GP made initial NAFLD based on routine LFT's and me questioning the results. During an acute cardiorespiratory event,, a cardiologist added NASH to the diagnosis. No treatment or further management despite my request. I mentioned my concerns to my endocrinologist and she organised a fibroscan which confirned NAFLD/NASH diagnosis, no treatment or follow up planned. Basically, no one gives a s...
• in reply tomauschen
Fortunately there are lots of new treatments for NAFLD/NASH being researched so there should be many more options soon. We'll do our best to share info on new developments with the community as they happen.
mauschen• in reply to
I asked my endocrinologist about the new treatment but she said they are unlikely to be widely available in my lifetime
• in reply tomauschen
Hi Mauschen, I am sorry to hear about such a negative comment from your physician! There are treatments in late stage development and there are opportunities to join clinical trials right now. NASH is affecting millions of people so there are huge efforts being made to find treatments, and you are being positive by asking for help and guidance. I looked on the clinical trial gateway for UK and found about 9 trials near London. This might be a starting point for you to explore?
There is no 'journey' to report. I have had no referrals, or medication for Fatty liver, and the only advice given was to avoid alcohol. With the cocktail of drugs I'm on for other conditions, just sniffing a beer mat would knock me out. So apart from a very rare glass of wine with a meal, I don't bother.
I just turn up for my annual blood tests for various conditions. If there is any problem doctor sends for me to discuss and treat. If he doesn't send for me, I just call after a week for the results, and ask if there are any issues, so far there haven't been any.
Sorry I have nothing helpful to offer.
Was mucked about at local hospital,3 years down the line referred me to Kings and then immediately I had a diagnosis.Exceptional treatment given there
• in reply to
Thanks for sharing, would you mind sharing a bit of information on what has made the treatment at Kings "exceptional"? What kinds of treatment?
My journey has been relatively smooth. I am quite proactive in my health care, and mydoctor is grateful for my input. I haven't seen any consultant or specialist for nafld, unlike the attention I have had for my atrial fibrillation. Had lots of hospital apts for that, with appropriate specialists.
Gastro -and PCP and myself doing research - i had trouble with the Gastro Dr before the one i have now she at least listens
My GP has not referred me to any consultant or specialist, it is difficult to get an appointment, probably due to the shortage of doctors at the practice, I usually have a telephone appointment, I always mention it when I do get to see someone, I rarely see the same Dr so by the time I've described the pain, my ten minute appointment is over. I just live with the pain when it comes, thankfully it doesn't happen too often, I always say it's like a herd of horses have trampled over me, and I'm totally washed out. I have related all of this and more to Dr to no avail. Sorry I've gone on again I'm venting my feelings again.
• in reply tokatyjane75
Sorry to hear about the painful episodes. Have you been told what the cause of the pain is?
katyjane75• in reply to
Rolf-HU I have never been asked for or given any information regarding my diagnosis NAFLD Getting an appointment is virtually impossible I mainly have telephone consultations, I have asked to be referred on to more qualified professionals,his reply was, they are overstretched and he was loathe to refer. Stupidly I just accepted his reasoning and went home, I then started to think about it I realised he must be thinking I'm not worth it, and he must be ageist, I can't change the practice, the only other surgery have closed their lists, I know I'm worth it but what can I do. I can add that the hospital is now out of special measures. So short answer no treatments no referrals no information.
My gastro put me on Vitamen E 400 mg twice a day. He and my PCP says that there are good reports about this treatment. My concern is that I am on so many other meds for different things that I worry about the E helping at all.
Yes, I have different specialist (GI, blood doctor, endocrinologist, liver doctor, dietician, general family doctor). So far, my healthcare journey has been good (with work insurance) but worry about what the future holds in regards to healthcare cost, availability, and efficient care.
I think that like other dubious etiology diseases - Gp's and even Specialists can often not take NAFLD seriously - there is not enough 'prevention is better than cure'. Having had the condition for 25 years - the first 15 of those I didn't think about the diagnosis much. However when I started getting increasing health problems eg indigestion and bloatedness/constipation and fatigue, I was referred to an excellent Gastro-enterologist who was very thorough in her investigations - she suspected portal hypertension and other somewhat scarry things and referred me to a Hepatologist who was somewhat more reticent re my interest in nutritional connection.
I would like to go back to both these doctors to tell them my story of improvement
Dear HBrand1, I do hope you can help, would you send the last txt you sent me I accidentally deleted it
My GP sent me to a GE, that did many blood tests. Came back with NASH-severe scarring, Alpha-1 Antitrypsin Deficiency. My GE has sent me for lung function test, so I imagine I'll be gaining a Pulmonologist. I also have ITP, & see a Hematologist for that.
At first, my Rheumatologist thought I had Autoimmune Hepatitis & referred me to a gastroenterologist. When they found cirrhosis I was referred to a hepatologist/pre-transplant clinic at University of Michigan.
Alpha-1 Antitrypsin Deficiency. is a liver disease first and foremost, I have suffered the condition a decade, its genetically inherited, they test the lungs as well, or should do..I was diagnosed with lung disease aged 46 and very severe lung disease from AATD , my liver is NAFLD caused through the back up of the glyco protein that cannot be released correctly into the blood stream this in essence is AATD as this valuable protien the largest in the human body primarly protects the lungs we inevitably get very sick from non protected lungs .. many alpha's have both or one outstanding problem usually the lungs, especially if they smoked, this disease is caused through a fault from genes one defect one from Mother and one from Father, its essential to be tested for it if your suffering either liver or lung diseases ..please be your own best advocates on this and ensure your tested, there are lots of things we can do to maintain ourselves with alpha mostly a clean healthy lifestyle first and foremost and common sense, there are therapy's available only for lung disease in USA and most European Countries that help slow the emphysema down, unfortunately the UK continue to deny alpha one patients this only treatment to date, ..If you show any signs ...get them to test you regardless of views or
I have seen a Hepatologist & Gastoentergoist & GP
No one mentioned elevated liver enzymes to me until my gastroenterologist did prior to an EGD scan. Gastroenterologist sent me to a hepatologist for a FibroScan of liver. Hepatologist informed me I had stage 2 or 3 NASH. I was in shock. Liver biopsy has confirmed stage 3 NASH
I'm having another liver scan...and some more blood....
Popping only happened 2 when I was on treatment.......
I didn’t have insurance. So no doctor. I would just suffer through illnesses for years. I had ear aches, I would be really ill will the flu. I couldn’t afford a doctor. I never went to the ER.
until that day I threw up a quart of blood. I only went then because my brother witnessed me getting sick. I refused to go because I didn’t have insurance. He threatened to call an ambulance. I just wanted to crawl back in bed. . If he wasn’t there I know that’s exactly what I would’ve done. I know I would not be here today. Then I found out I needed a transplant and just thought that was the end. With no insurance I was literally dead.
That was when I signed up and was lucky enough to get my health insurance through the ACA. I have President Obama and the ACA to thank for giving me a chance.
I was lucky. I had a great Gastroenterologist. Even after he referred me to a transplant center he was my advocate. When the Center was dragging their feet getting me evaluated he would call and ask why they were waiting.
He even wrote me a letter telling the I was a very compliant patient and he whole heartedly supported me being listed for a transplant.
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