scared

[Nicky1001]

hi I’m really scared at min I had blood test done and they said it’s auto immune but doc never said much of anything it’s mild at the min sumat about smooth muscle I’m goin crazy not noin wats goin on she said she is waiting to ere from liver specialist so I don’t even no when ☹️. Doe anymore no anything that mite help me carm down a bit thank you.

[AyrshireK]

Hi Nicky, what led you to having these blood tests? Are you symptomatic or something?

Just because smooth muscle antibodies are present doesn't mean you necessarily have an issue although if you have elevated liver enzymes and antibodies indicating something auto immune going on then it is correct that you get referred for further tests and to put a positive slant on your situation the GOOD NEWS with any auto immune liver disease (especially something like auto immune hepatitis - AIH) they are generally easy to control with medications to prevent any disease progression or actual liver damage.

I would completely stay off Dr Google until you know what you are dealing with - a diagnosis of an auto immune liver illness involves a big jigsaw puzzle - ruling out the 'obvious' candidates for liver problems then tests to see what exactly is going on. This may involve some scans, more bloods and possibly a liver biopsy and often how your numbers react to the common medications for auto immune issues. (Steroids followed by immune suppressants).

Hopefully you see a consultant very soon.

Katie

[Nicky1001 in reply to AyrshireK]

Hi thanks Katie! I’ve been going to docs for a while cos my bones hurt I tend to have a problem with vitamin d but all them test came bak ok the first lot told her about my liver she thought it was fatty liver so I lost 2 stone and did not drink for 2 months and the second test came bak and it had gone up she said she was surprised of the results she really thought it was fatty liver and she will be in touch when the specialist gets bak to her it’s the not noin that is getting to me thanks for your reply. I’ve also got proarsis I don’t no if that makes a difference

[AyrshireK in reply to Nicky1001]

Like I said if they discover that it is auto immune then hopefully you can commence treatment and get it all under control soon.Waiting lists are affected by the covid back log but be persistant and make sure you get seen by at minimum a gastroenterologist but far better still a hepatologist (liver specialist).

Katie

[Nicky1001 in reply to AyrshireK]

Thank you I will!

[LemonMeringue15 in reply to Nicky1001]

Are you on any meds for your psoriasis?

[Nicky1001 in reply to LemonMeringue15]

Hi no I’m not antihistamine and steroid cream 2 lots since I was 21 when I got pregnant I came out in a rash all over my body they did a biopsy. I forget how u spell it but it’s called mucha-habermann disease I just tend to get it on my legs and face now. Sumat new is happening now little white spots on my arms I’ve never had before an my hands r so itchy it’s unbelievable!

[LemonMeringue15 in reply to Nicky1001]

Ah ok, I was wondering if you were on certain meds that can affect your liver, and should be regularly monitored through bloods. Sometimes the tests aren't always done and liver problems can develop but doesn't sound applicable in your case.

[Davideo]

Blood tests are just a guide no more. No one will know anything till you have a scan. If your worried about your liver stay away from red meat and alcohol. These are the two things that cause my symptoms to worsen.

[Oldbits]

Hi nicky, my husband had..AIH dont panic. He has other issues aswell that have damaged his liver. Stay away from google and alcohol, eat healthy, exercise and rest when your body tells you. Get into good habits now and it'll make a difference. Husband was on steroids and immune suppressants for 5 years and now given all clear on the autoimmune disease. Waiting is hard but you're in the system now and will get seen and have tests to show what's up. Look after yourself

[Readlots]

Hi Nicky, don’t panic. I have autoimmune hepatitis and primary biliary cirrhosis - both autoimmune liver diseases. I also have a genetic liver condition. I was diagnosed early and have been taking medication for many years and my conditions are well controlled. GPs always seem to think it’s fatty liver disease before they do more tests. I guess it’s the most common liver disease. You’ve done the right things losing weight and not drinking. It’s normal not to take in what doctors say when you’re first diagnosed because it’s a shock. Write yourself a list of questions to take to your next appointment and see if someone can go with you to listen and make notes. It’s hard to talk to a doctor and take notes at the same time. The British Liver Trust has excellent information once you know what you’re dealing with. Good luck

[Kakey]

I know how scary it is to have this hanging over you, I have autoimmune liver disease too. Waiting for a diagnosis is so stressful, I hope you're doing OK now.