British Liver Trust
14,122 members6,976 posts

help me please

hi any advice on how to get my gp to listen to me and refer me to the liver specialist. I have been sick along time but really sick for 2 years. my rheumatologist says I have autoimmune hepatitis but she cant treat me for it until the liver dr diagnosis me with it. yet my ultrasound and my mri wont show any damage to my liver. my ggt is really high eventhough I don't drink at all. my muscles are all going weak especially my legs which burn from my waist to my toes.i have constant nausea and lots of bloating and lightheaded floaty feeling sometimes so bad I fall over from my gait going off or cant focus brain fogs etc. I am positive I have a liver disease and im not filtering anything right and its affecting my entire body from bone to muscle pain and joints and nausea and bloating and vomiting bile but yet until they can actually see some damage on the scans they wont even refer me. meanwhile I feel like im dying no vit d no vit e and I cant get the drs to check anything else. help me please I feel like im dying everyday

12 Replies
oldestnewest

If your rheumatologist feels you have AIH but can't do anything about it .... would he or she not refer you to hepatologist? Just a thought if GP not willing. Active AIH would usually result in high ALT showing your liver is inflamed and diagnosis can be a longish process - a whole jigsaw puzzle involving ruling out all other causes, presence of certain antibodies, positive reaction to steroids and in most cases a liver biopsy. AIH won't show up in an ultrasound scan but certainly needs treating before the damage it can cause does.

Katie

5 likes
Reply

my alt is normal but my ana is extremely high which is a test they did for inflammatory markers so almost everything in my body is inflamed all the time. they thought I had lupus but my ena is borderline so they wont diagnose with that one either. guess I gotta go on war path and start ticking off my 3 rd set of specialist. something has to make these drs get off the boat and start doing the right job

2 likes
Reply

Have they tested you for fibromyalgia? - high ANA can be a symptom of that, it's obviously another auto-immune condition. A lot of the symptoms you are describing are very often found in fibromyalgia. As your ALT isn't inflated whilst you have all these symptoms I can see why they are doubting a diagnosis of AIH. During a flare which is what brings symptoms you normally would see a massively inflated ALT level.

Katie

2 likes
Reply

hi again thanks for replying ive seen a respiralogist as I get a lot of chest pain in the muscle wall. she thinks I have inflammation in my chest wall as well since 2007 but my chest xrays and dry cts don't show any sign of lung damage either. my respiralogist is easier to work with so I begged her to do further testing for me as I was exposed to asbestos in 2007 also. she is now finally sending me for another ct only at a higher reslolution than the last. I already had one pulmonary function test that came normal.but now she is sending me for a second one as well as a blood gas check and a methocoline challenge to check for bronchial airway swelling. I seem to breath normal though but I guess well see. I don't see how the lung thing will affect my stomach though with the nausea and vomiting and spastic bowel as the access bile and the constant changes in bms lol.or the burning in my leg muscles and abdomen etc. im going for a virtual ct colonoscopy on the 16th of april to check the large colon for leakage or ulcers or even cancer and the respiratory test in april although im not sure how long il wait for the chest ct now saying maybe 6months. just from all the symptons and the blood tests and the vit deficiency of d k and a im matching everything that would be caused by fibrosis of the liver or of a fatty liver. gonna keep trying to carry on now with a walker and do some more begging I guess if these last test don't show the lung thing.

1 like
Reply

ps when I have the flares I throw up so much I dehydrate my entire body to the point that the hospital emerg can never even get enough blood to test during the flare ups.they never keep me in to hydrate me and then test me and its usually takes me a week or so to hydrate my body back to the point to get blood again and by then the flare has passed. the one time they did get blood every number went high wcb rbc cortisol ggt and other liver numbers cholesterol as well. its so weird lol

1 like
Reply

As Katie says, if your rheumatologists believes you may have issues with your liver he or she can refer you directly to the gastroenterologists/hepatologists. My renal consultant referred me, and vice versa when my gastro consultant referred me back to the renal team later on to give the kidneys another check.

You mention your GGT is really high, if you are taking meds for your rheumatology issues then these may also be contributing to those results. Its a common finding with anti-inflammatory meds for example for a raise in LFTs to be observed.

1 like
Reply

hi im not taking any meds at all accept for my reflux pill and vit d. the rheumatologist says she cant diagnose the liver but my smooth muscle antibody came back positive on the liver so she thinks it autoimmune hepatitis. she cant refer me in alberta to a hepatologis, without evidence on a scan of liver damage which there saying nothing shows on mri or ultrasound accept one stone in my pancreatic duct which all 3 specialists said shouldn't affect me at all. the ues team put a referral in to the liver doctor but because nothing shows on those 2 scans and I only have one elevated liver enzyme, the referral team wont put my referral through to one. the gastroentologist wont push for the liver referral as he doesn't believe its my liver. my dad almost died last year from blood sepsis from his liver toxifying his body and I believe im almost at the point to. there is a lot of beuracracy and procedures here with the system and it really hard to get around or get what you need one.im at the point where my muscles are so bad and burning I can barely walk or lift things or even keep my neck pain and weakness makes me go dizzy. arrrggg so frustrated. starting to think im going to be one of those people who die without even knowing from what ...

Reply

ps the chronic muscle weakness and pain affects every muscle in my body and the drs wont give me any pain meds until they know what it is but yet they cant figure me out yet after 2 years. the nausea is terrible especially when I have a bm building. or have the vomiting of the bile that makes my entire body lock like a visegrip. ive tried lyrica did nothing and the only other one they offered me I cant take because I can get seritonion overdose so what to do

Reply

Hi

I'm so sorry you are suffering so much. You could threaten to writed to pals that usually gets them moving!! If you feel too I'll to write, ask someone to write the letter and you just sign it. Love and hugs Lynne xxxx

Reply

If your go won’t listen then swap gp’s, you don’t have to give a reason just ask reception to a go that someone has recommended! Or bypass the go and ask your rheumatologist to refer you! I’d do both!! I recently swapped go as mine wasn’t listening to me. Good luck xx

Reply

Hi, sorry to hear you are suffering so much!

When I went to my G.P. 2 years ago with stomach pains I was immediately referred to the Hospital for tests and it was discovered that I had Cirrhosis of the liver.

I would suggest that you get a second opinion from another Doctor. Your condition sounds pretty serious ..

Regards,

Ron

Reply

hi and thanks for replying this is the second gp I have had a referral put in for I fired the first one as she absolutely refused to do any tests accept for an endoscope through my throat when I had globus sensation in my esophagus for over a year and it turned out to be some inflammation that got irritated by the stomach acid and I got put on dexilant for the acid and it took about a year but I finally got rid of the globus sensation. so after a year of fighting with her that I still was sick and getting sicker she refused to believe me so I fired her and got a second gp to look at me. he is doing some further investigation on my colon because he is almost certain by the liver mri its not liver damage.and because the mri only shows minor damage to my ducts he refuses to believe its my liver and the duct issues aren't bad enough to cause any of this. I just fired another rheumatologist as she feels she can take her time in trying to figure me out and only will see me in 6 months after all the other specialists redo their tests I got done over the last 2 years already. anyway in alberta they only allow you 2 opionions by 2 specialists so I cant fire anymore. its sofrustrating all I need is one good internal medicine doctor to do what they need without questions from ahs and finally get me diagnosed

Reply

You may also like...