Follow Up After Diagnosis: Here's the update... - PBC Foundation

PBC Foundation
7,547 members6,396 posts

Follow Up After Diagnosis

Here's the update to my previous post ( Just following through with the treatment plans.

Bloodwork November 2015:

Liver Panel:

AST 57 (normal 0-40) - down from 113 last month

ALT 92 (normal 0-32) - down from 170 last month

Alkaline Phoshatase 45 (normal 39-117) - last month was 49

Bilirubin 1.8 (normal 0-1.2) - up from .8 last month

Bilirubin, Direct .27 (normal 0-.4)

Thyroid Panel:

TSH 3.29 (normal .45-4.5)

T4 9 (normal 4.5-12)

T3 27% (normal 24-39%)

Free Thyroxine Index 2.4 (normal 1.2-4.9)

Lipid Panel:

Cholesterol, Total 214 (normal 100-199)

Triglycerides 209 (normal 0-149)

HDL Cholesterol 38 (normal greater than 39)

VLDL Cholesterol 42 (normal 5-40)

LDL Cholesterol 134 (normal 0-99)

Vitamin D, 25-Hydroxy 21.4 (normal 30-100)

Bone Density Scan:

No signs of osteopenia or osteoporosis

Treatment Plan Progress:

Fatty Liver Disease - I have been watching my diet and avoiding alcohol for 4 weeks, and my AST and ALT have significantly dropped. They are still elevated above the normal range, but it is encouraging. I met with a nutritionist, who said my diet is healthy and to keep up the good work. I just need to increase my daily protein a bit. Follow up bloodwork scheduled in 3 months, then see hepatologist. Follow up MRI in 6 months.

PBC - I got vaccinated to protect against Hepatits A and B. Bilirubin is elevated above the normal range, which is typical with PBC. It has never been elevated before. After the blood was drawn, I started Ursodiol. I've been on it for 10 days with no negative side effects. I have noticed that when I take my Ursodiol with my meal, I can digest my food a lot better. No bloating or cramps or vomiting anymore. I can even eat the foods that I used to avoid: bread, meat, pasta in small amounts, etc. I have dropped about 3 lbs without trying. Follow up bloodwork in 3 months, then see hepatologist. Hepatologist will discuss possible liver biopsy and further studies. Follow up MRI in 6 months.

Thyroid - my TSH was elevated last month, but the thyroid panel shows everything in the normal range. No need to see the endocrinologist. Follow up bloodwork in 3 months to monitor.

Cholesterol/Triglycerides - I am outside the normal range on all the lipids tested in the lipid panel. I followed up with my general doctor, as suggested by my specialist. She believed that medication was not necessary yet. She said the levels were not too high, and she wants to watch and wait. Follow up bloodwork in 3 months.

Vitamin D Deficiency - Vitamin D is low, so now I am taking a prescription supplement Dristol once a week. Follow up bloodwork in 3 months.

5 Replies

Hello chynablue.

Apparently prior to diagnosis of PBC one can have a higher cholesterol reading. The urso we take was originally formulated for dissolving cholesterol formed gallstones so maybe once taking urso it also can bring down cholesterol levels.

I k now in 2010 prior to my diagnosis mine was said to be slighter higher than normal but when I saw the consultant for the first time he was not interested in that at all. I've not had any problems with this at all.

The only thing that the GP was flagging up was a low Vitamin D level, the rest of my vitamins and mineral levels were adequate. He mentioned about supplements but when I saw the consultant and he did a check of the Vitamin D he was not concerned at all. He sent me a letter at diagnosis stating that it was 'a bit low' but 'not bad' and wasn't recommending supplements. I wasn't sure what he meant, rang his secretary and asked for a figure so I could see. She sent me the print out of the result and mine was on the line. At a re-check 6 months later when we were in the midst of the British summer (that probably had more rainy days than sunshine!) mine was perfectly normal. I have spent more time in the sun since 2011 than I did pre-diagnosis as I was never a sun-lover but these days find it might be a pretty good idea to give myself a dose of it when I can.

I found it interesting reading your mention that you had had Hepatitis A & B vaccinations since diagnosis. I actually had these around 3 years prior to starting to itch in 2010 when I was in a job set in a medical environment. I was offered and took a course up. Given the consultant reckoned I'd started with PBC a 'few years prior' I somehow wondered if having the hepatitis vaccinations somehow triggered the PBC. Can't say for sure but I'd not had any vaccinations since I was around 12yrs of age when I had the rubella that used to be offered to school girls back in the 1970s in the UK.

I am offered flu vaccination and there was one known as zoster (chickenpox and shingles as I found out) on the letter I received from my GP surgery a couple months ago. I have never taken these up since having been informed I have PBC as even now I don't tend to come down with colds or have anything like 'flu, never really have succumbed whilst other family members around me have during the colder months. I'd rather not rock the boat so-to-speak now as I don't know if having would be a good thing or bad thing for me.

I had allsorts of blood work done in 2010 and some are on the print out of the bloods I got at diagnosis that were taken pre-diagnosis. On other health issues like thyroid, etc I came out with negative results for all and just had the positive for AMAs that gave diagnosis.

1 like

Hi Peridot,

I always enjoy reading your responses. Some aspects of your experience are similar to mine, so its helpful to me. I hate that my cholesterol is high, so it is great news to me that the Ursodiol might help lower it. I have a low fat diet, so I'm not really sure why its high.

I kind of agree with your suspicion about vaccinations triggering PBC. Or, at least I think it is possible. From my understanding, anytime the body is irritated it causes inflammation which causes the immune system to respond by making antibodies that target the source of the inflammation and attacking it. For example, if I get infected with a bacteria, it causes inflammation and my immune system would create an antibody against the bacteria and then fight it off. The antibodies are stored for later use so that if I get infected with the same bacteria, my body will recognize it and fight it off faster. Right? Its probably an oversimplified explanation. Sometimes, like with PBC or auto-immune disorders or allergies, the body makes a mistake and creates antibodies against harmless substances or against our own tissues. It could be that a vaccine could be the source of inflammation that led to the body mistakenly creating AMA M2 antibodies that attack the bile ducts. I don't think that means these antibodies are created directly because of Hepatitis vaccines, but any liver-related inflammation runs the risk of causing AMA M2 to be created. At least, that's my take on it.

In my case I might have partied too much or been going through too much stress. Drinking and stress cause inflammation. I was also very sick and inflammed for years before I finally was able to have my hysterectomy. Or maybe I was born with PBC. Who knows?

I think with vaccines, I would weigh the risks and benefits. I don't usually get a flu shot because I hardly ever get sick, and I hated my job so a week out of work with the flu did not sound like such a bad idea. But now, I love my new job and its not worth it to me to get the flu. I checked with my specialist and he recommended that I get a flu shot to avoid being sick. Plus, I'm worried that being sick for a week could trigger my immune system to attack my bile ducts. I'd like to keep my body as calm and non-inflamed as possible. A mild inflammatory response to weakened pathogens in a vaccine sounds better than running the risk of getting sick with the actual flu for a week.

Sorry for rambling on! I hope some of this makes sense :)


I noticed you said your TSH was elevated last month. Have they checked you for thyroid antibodies? I've had antibodies at least since 2012 and it was within the last 6 mos or so that the TSH has consistently remained elevated.

1 like

Hi Jean!

Thyroid antibodies are for Hashimoto's, right? I think I should get checked for that. If my thyroid bloodwork came back with anything abnormal, I would have been referred to the endocrinologist for further testing. That would have included checking for thyroid antibodies, I think. Since it was all normal, they figured the high TSH last month was a fluke and decided to just test again in a few months.

I heard someone else say that they were tested for all autoimmune diseases. Is that an actual thing? I'd like to have that done, but I don't know what to call it.


There is also Graves disease that is autoimmune too, (I believe) that causes thyroid to go hyper, instead of hypo as what occurs in Hashimoto's. I've found they usually don't test antibodies and the thyroid can be in normal range while the thyroid is slowly being destroyed. I think though most labs go to 4.5 or 5 on the tsh, seems like I remember one of the American endocrine groups, not sure which, recommends tsh over 3.0 is getting too high. The Thyroid UK group on here could probably tell you. I think a Rheumatologist or Immunologist do those kinds of testing for auto diseases but not sure.

1 like

You may also like...