New to site-any advice??

[bam1993]

Hi I am new to this site.....but have been on the Liver Trust site for a little while-I am also on the Lupus one.

I was finally diagnosed with Lupus in Jan 13 after many years of suffering and wrong diagnosis of 'Fibromyalgia'-during this time I did take a lot of Ibruprofen/Paracetomal for my joint pain (as the pills I had been given for 'fibro' did nothing for me)...... When first diagnosed with Lupus I was put on Methotrexate-and had to have regular blood tests-to monitor this-after about 8mths I had a phone call from the hospital to stop taking the Metho immediately-which of course I did-due to high Liver Enzymes-I was then put on steroids.......I then started suffering from constipation, (something I have NEVER had-usually I have IBS which I put down to complication of the Lupus)- and had terrible noises coming from my belly!! My GP examined my liver area and said it felt enlarged (I did not have any pain in that area-just sensitive to the touch) sent me for a scan and I went to see a 'gastro' Dr at my local hosp (same hosp as my Rhuemy for Lupus) when I got to this appt the gastro said that although there were signs of damage to my liver (he did not explain what) asked if there was any other 'auto immune in my family' (my mum is type 1 diabetic-also has liver probs-but really does not ask many questions-she just takes all of the tablets given to her-bless her!!) and said that they would monitor me through blood tests done by my Rhuemy.

Fast forward a couple of months and I had to have a large dose of antibiotic due to being stung by an insect.......half way through this course I felt my Lupus rising-and went into a full Lupus flare, also became VERY constipated again, and my urine was and is very dark and smells of liver!!!- I felt absolutely 'wretched' nauseous-could not eat-and had pain all over-could hardly get out of bed - was sent for bloods again-and again all of the tests came back with very high Liver Enzymes ( I keep asking for print outs-but am not given them-my GP (who I DO have a lot of faith in) read some out to me:-

GGT 598

ALT 197

ALP 128

These are just the ones I know-and I believe they have been much higher than this at points!!!! This was the first time I realised how bad the situation was-I came home 'googled' these results and went into shock a bit!!

My GP has now arranged for me to have a liver biospy-but I still have 2 weeks to wait for this-and in the meantime I am not taking any painkillers at all (unless truly desperate - like the other day I took some paracetamol as had a family day out and did not want to spoil for everyone else) For anyone that does not know about Lupus-it causes terrible joint pains-My Lupus does seem to have calmed down now-but I do still have very bad days-My constipation has gone (although I do not feel that it has gone 'back to normal'-or how I was before-My urine is STILL very dark and smelly-esp in the mornings (sorry for the graphic detail!!).....I still do not have any pain in the liver area and now it does not even feel sensitive to the touch.

I have another appt with the 'Gastro' on Thursday 4th Sept (my biopsy is not till the 15th Sept)- this was pre booked thinking that they would have the results from the biopsy-BUT I am still going to go to this appt as I have a LOT of questions, and getting an appointment for the NHS around here is a nightmare........I know that they will not know exactly what is wrong until the results of the biopsy are through, but I do at least want to know what my blood readings are now-and what they have been (my GP said only the hosp can print them off?) But surely I have a right to know this so that I can monitor it myself?? And any advice on what to eat-what to avoid.

I will add that I do not drink ANY alcohol and have not done for about 10years-I had loads of tests done in 2008 when I was hospitalised with pneumonia/pluersy-liver/spleen/kidney scan and nothing was flagged up about my Liver then (which now looking back pneumonia is often a symptom of LUPUS, but all they said at the time was they could not find a 'cause'for it!!)

I feel that I have quite a 'healthy diet'-plenty of fresh fruit and veg-I also take 'Milk Thistle' on a daily basis.

I am sorry about the long post-but there was lots to 'get out' and I am truly worried about what could be going with my liver-if anyone has any advice on what I should ask at my appt on Thurs I would be really gratful!!! Julie

[L4LSarah]

Hi Julie!

I can only imagine your frustration!

Goodness, what a lot has been going on!

With regard to your blood test results, you are perfectly within your right to ask for copies, so please feel free to do so.

As you say, it’s important to keep track of your results for your own knowledge and information.

With the results you’ve provided, I would say that the ALP may still be within range (going by most ALP ref ranges) – although possibly at the upper end of normal?

The GGT is very high isn’t it, and also the ALT.

NB - when the liver is inflamed for 'whatever' reason (cause), the ALT will become elevated.

As you probably realise, the phrase “Liver Function Test” is misleading, because it can measure possible hepatocellular damage (temporary or permanent), rather than liver function.

And of course, no doubt, you will be aware of the fact that the ALT, AST, ALP & the GGT enzymes are found in various other organs and parts of the body, as well as the liver.

If your ALP was elevated along with the GGT, then I would immediately think that you had an obstruction in your bile duct, e.g. gallstones.

As you don’t consume any alcohol, then I would be thinking ‘medications’ were the main cause of your high GGT. If you smoked, then the GGT could be elevated due to this.

Have all of your blood tests been ‘fasting’ ones? I ask that, because ‘eating’ before a blood test can in fact LOWER the GGT result.

When you had your scan, and told that you had ‘liver damage’, they should have explained to you in more detail just ‘what’ that meant exactly…..did they mean:

•fibrosis?

•fatty liver?

•or, did they observe some permanent damage??

I would definitely want a more specific diagnosis of what was seen on the scan, and if need be, I’d request that the radiographer/consultant has another more thorough look at your scan, so that they give provide you with a diagnosis. If the scan picture didn’t provide a clear enough image (sometimes if there is a lot of bowel gas, the image isn’t clear), then they should have repeated it on a different day for you.

If your liver appeared ‘bright’, then they would have explained to you that you had some fatty infiltrations in your liver. (A person with a fatty liver would have elevated ALT and GGT). NB – diabetics are more likely to have a fatty liver.

Many medications (methotrexate in particular) can cause fatty infiltrations, and also, some people may have a predisposition to fatty infiltrations, due to familial high triglyceride levels.

Have you had your triglyceride levels checked recently? I expect you’ve had your cholesterol (ldl and hdl) checked, but they don’t always do the triglycerides.

The liver produces triglycerides, but they are present in many foods and drinks. And, as mentioned above, you could have higher levels than most, due to it being part of your ‘make-up’.

You mentioned that you have a healthy diet, but do you do much exercise?

Is your weight ok?

If you do have high triglycerides, you could try taking Omega-3 capsules, or have foods which are high in Omega-3 (e.g. cereal, fish), as this can help to reduce the level of triglycerides.

Although I’ve been talking ‘liver’, I am also concerned that the high GGT level may of course correlate to the kidneys and/or the heart.

Have you had a kidney profile blood test undertaken recently?

Have you had any cardiology tests undertaken at all? Is there any family history of heart problems? I only mention this, because an elevated GGT is also seen in people with congestive heart failure.

I don’t know whether you use this website Julie, but I refer to it all the time.

Please click on the link below:

labtestsonline.org.uk/under...

Perhaps you will be able to ask more questions on Thursday Julie, and whether you would prefer to have further tests undertaken BEFORE you have your biopsy.

To summarise, I would firstly ask for your scan to be looked at again, and maybe you need to have it repeated BEFORE the biopsy (when did you have your scan?).

I would suggest that one of the tests you have undertaken is the Creatine Kinase (unless already tested), and of course your lipid profile……AND triglycerides!

I do hope that the above may have been of some help Julie.

Please feel free to provide me with further info and to keep me updated.

You’re more than welcome to email me privately at: [e-mail]

If I don’t hear from you before Thursday, then here’s wishing you ‘Good Luck’ with the appointment, and don’t leave until you’ve had all of your questions answered, and that you’re satisfied you’ve ticked off all your concerns.

All the best to you Julie!

Kind regards,

Sarah

Helpline Manager – Liver4Life

[bam1993 in reply to L4LSarah]

Thank you Sarah....I really appreciate your reply!! There is a lot of info in there to look up and get my head around-I did not know about the fact that GGT can be an indicator of possible other probs-like the kidneys/heart.....I WAS a smoker-but gave up after finding out about the high GGT reading as came home and 'googled' and saw just how smoking can affect it!!! So as of about 5 weeks I am now a 'non-smoker'!!

On Thursday I will be asking a LOT of questions!!! Things were mentioned at my last (which was also my 1st appt with the Gastro)- But it seems that my Rheumy had intervened and said that he would monitor me with bloods tests via my Rheumy appts-and I was told there were 'smooth cells' and asked if I had a family history of liver problems (I told them Mum was under a Liver dr and that she is type 1 diabetic). To be honest I really feel that my Rheumy left me on Methotrexate for too long-and that is what has caused my liver to deteriorate!! He seemed really opposed to me seeing a 'Gastro' Dr??.....It was only my GP phoning the Gastro Dr that got me to the point of having a biopsy...I feel I should have had one back in April. I am wondering if I may AIH....do you know if a biopsy is the only way of determining if this is so???

As you said I will make sure to get all of my questions answered on Thursday-even if I get on his nerves-I will be asking 'exactly' what the scan said (the scan was done in March) and this time I want an explanation-not to be 'fobbed off' - I feel I have a right to know, especially in the light of what has happened since!! And I definetly want print outs of my blood test results!! At least to be aware of what medications I can and can't take-I am so frightened at the moment of needing antibiotics again-as I actually 'felt' things go wrong when I was on that last course, and if I had been warned about this in April at least I would have been forearmed!!

Anyway...Thank you again-I really do appreciate your help and info. Julie

[L4LSarah in reply to bam1993]

My pleasure Julie!

Please let me know how you get on, and keep me updated.

You're more than welcome to email me at my L4L address, which is: [e-mail]

Here's sending you lots of positive and empowering vibes!

Kind regards,

Sarah

Helpline Manager - Liver4Life