More confused than ever!

[tinypixie]

Hi, Everyone.

I just got the results from my liver biopsy and the results are normal!  I know I should be jumping for joy but I just don't have a warm feeling about it.  Prior to this, my LFTs were ALP =513, ALT = 450; GGT = 750, cholesterol = 10.6, Fibroscan = 14.8, BMI = 17.3, AMA negative, and B12 = 1035.  I don't drink or smoke.  The consultant gastroenterologist (not a liver specialist) thought it was PBC and prescribed Urso. Within several weeks my LFT numbers went right down.  Now he is saying that it's probably not PBC and to no longer take Urso.  The only thing he plans to do is see me in three months and repeat the LFTs.

How can my numbers be so "deranged" yet the biopsy results be normal?  I have read that between 20% and 40% of biopsy results are not accurate.

I would like another opinion but in my area (West Wales) I am not allowed to see another consultant.

Does anyone have any advice as to what to do, if anything?  Or should I just ignore it all?

Many thanks in advance,

Tinypixie

[chynablue]

Hi Tinypixie,

I'm sorry to hear that your biopsy results are so confusing! I don't have the answer, but I do have a guess.

Looking at your low BMI and knowing that you have hypoglycemia, it can happen that your cholesterol, ALP, ALT, and GGT are all high due to the low level of blood sugars. When the body does not have enough blood glucose, it starts to rely on fats as fuel. This triggers the body to release fats into the blood stream, causing increased cholesterol readings. As body fat is depleted, BMI is lowered, and the body relies more and more on breaking down organ and muscle tissue. If the body is breaking down liver tissues for fuel, this can cause increased readings in ALP, ALT, and GGT as liver cells are destroyed. It also makes sense that the MRI showed that the left liver lobe was shrunken. Hypoglycemia can be caused by malnutrition, insufficient food intake, anorexia, drinking alcohol without eating, pancreatic tumors, and disorders of the adrenal and pituitary glands.

In this case, the biopsy might not show any signs of high levels of inflammation, cirrhosis or scar tissue, which is what they usually look for. They might have seen damaged cells, but not enough to report as abnormal or an indication of typical liver diseases.

Fibroscans have limits to their accuracy. According to one study, "Patients with extreme - very high and very low - BMI were recently found to have higher LSM values." ncbi.nlm.nih.gov/pmc/articl... LSM stands for liver stiffness measurements. So, you could be getting a high fibroscan reading, but it does not indicate cirrhosis.

I'm not sure if any of this helps, and I don't know if its correct. But, it does seem to fit the test results that you are getting.

If the hypoglycemia is the cause of these readings, then I would say I agree with the doc that it is not PBC and the urso might not be the right treatment at this time. A nutritious diet would be more helpful; I would keep a food log to show to the doctors. They might be able to point out areas where diet could be improved or refer you to an appropriate dietician. If they see that diet is not the cause of your hypoglycemia, they might look more closely at your pancreas, adrenals, pituitary, and hormones as possible contributors.

[tinypixie in reply to chynablue]

Dear Cynablue,

Thank you for this amazing reply.  You have suggested an explanation that I would never have thought of in a million years and it does make a lot of sense to me.

[spoul]

Hi there I can't answer the question about your blood tests but I think I would contact the pbc foundation for some advise especially if your after a second opinion.

It will be interesting to see how your lfts have responded to stopping urso 😊

[MissusTee]

You also have a legal right to get a second opinion, so you can ask to be referred elsewhere x

[Hidden]

Hello tinypixie, as far as I know urso is generally only taken with PBC long-term.

It is I found a few years ago used for pregnant women who develop that itch 'cholestatis' but short-term.

I did read that it isn't the treatment used in another auto-immune liver conditions known as PSC but my brother-in-law's wife was diagnosed with PSC 3yrs ago now and when I saw her last year she said she had started to itch and the consultant had put her on urso (that wasn't doing anything for it she said).

Usually a biopsy can diagnose PBC due to cell changes apparently.  (It seems a bit questionable re stages if you have PBC using liver biopsy due to the site and liver being large organ.)

I am in England and know that we tend to be able to choose where we go to hospital and apparently now we can actually ask our GPs to make a referral as opposed to he/she suggesting one.  I don't know the rules in Wales, they might just vary.  I know someone else on this site has switched hospitals in Wales recently and now going to Bangor.  Not sure if that is yours or if not perhaps ask your doctor if he/she will perhaps let you have a second opinion as it is apparently our right to do so.