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PBC Foundation
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Frequent tests

Hi all.

I am wondering if you can help us. We are asking you what tests you have that are common, aside from the obvious PBC ones.

So an example would be Dexascan. Not PBC specific but commonly taken by those with PBC.

So fire them at me... What other tests do you have?

(Preferably with a numeric answer)

Thank you.

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Hi Robert

Fibroscan. Usually have TFT’s done with other blood tests.

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TFT?

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I get dexascan, thyroid, cholesterol panel.

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Hi Robert, I've had 2 fibroscans and 2 ultrasounds, 1 Dexa. Other than the usual LFTs I get my cholesterol (now 4.9 - phew!) and thyroid checked annually, plus AFP (last result was 5). Also full blood count, bone profile and renal profile. All in the normal ranges - thankfully I'm an Urso responder. Hope this is what you were looking for. All the best for 2019.

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AFP?

What renal tests please?

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AFP - Alpha fetoprotein - I think it's a cancer marker

The renal tests I had were: Sodium (140), Potassium (5.2), Urea (5.3), Creatinine (64).

According to the results I get from the GP these are all within the normal ranges. Anything else just let me know. You're working late!

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Thank you.

Always!!

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No rest for the wicked.... Thanks for all your work though and it was great meeting you last year.

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I have had a fibroscan, a Dexascan has been scheduled and eye test due to Sjorgrens (will require treatment).

I am only recently diagnosed and on urso. A follow up fibroscan is planned for within a year.

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I am in the US. Once a year, I get an annual physical with my GP which includes a urine test, EKG, & full comprehensive blood panel (too detailed to list), but to illustrate how detail it is: it also includes TSH, T4,T4Free, T3 Free, T3 total, TSI, thyroid A/B (tpo, ata), vitamin levels i.e. B12, folate etc...

Hepatologist orders the below for me quarterly unless otherwise noted:

Comprehensive Metabolism panel

Lipids panel (cholesterol)

Comprehensive liver panel

Vitamin D

TSH (annually or at my request)

Dexa Scan (every few years)

Liver sonogram (every few years)

Fibroscan (I initiated this by asking him about it & he did one for me)

Endocrinologist orders me an annual thyroid sonongram & thyroid tests & other tests as needed.

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Great answers, everyone, thank you.

Details are good. Feel free to message me if you prefer or if anything is confidential.

If I can ask for full titles, as opposed to initials, that would be great.

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Comprehensive Metabolic Profile

Complete Blood Count

Lipid Profile

Thyroid Panel

Abdominal Ultrasound (1)

Vit D as needed

Vit B12 “ “

Cardiac Calcium Screen Test (1)

I’m sure once my hepatologist lands (😅), I will have many more labs.

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Liver biopsy CT scan ultrasound and blood work. USA very different. Also depends where you are located.

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I was referring to specific liver tests. Of course b12 vitamin d comprehensive panel metabolic panel urinalysis and gyno.

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Sorry thyroid bone density cholesterol AFP ANA AMA colonoscopy and gastrocopy sed rate and more. Is there a reason for question?

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There sure is. We are working on our new app and we are looking to include trackers for many test results.

Thank you all for your input.

More info always helpful,

Robert.

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I forgot, I also did a cardio calcium scan to assess need for statins. Was suggested by GP & cardiologist.

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That’s interesting ninja! Was just reading about the calcium test, a CT scan, right? I’m taking statins and I want to stop. Probably bit of a hassle to get that test in the UK I’d expect though. x

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@Skypony:

Yes, it is a scan. It calculates whether you are at risk for coronary heart disease based on if they find calcium in the arteries near your heart.

I don’t know why, but the insurance policies here won’t pay for this test so had to pay out of pocket for it. I wasn’t familiar with this test at all. My GP mentioned it & sent me to the cardiologist who ordered it for me.

I don’t want to take statins either, but all my doctors tell me that it is better to take it including the hepatologist. He said it was safe to do so.

You can ask your GP about it & see if you can easily get the test. Never hurts to ask or try.

Let me know how that goes.

Haley

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Thanks very much Haley, I’ll enquire about this.

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It is also to see if there is any calcification. Mine picked up a trace. Not bad when I’ve had high cholesterol for many years. Good test to have.

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The insurance wouldn’t pay for that test. I had to paid out of pocket. It is a good test to have for peace of mind. Mine was zero, but cardiologist thought that given my family history it is more cautious for me to be on the statins.

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In my family as well. Cost $125 but well worth it. 😊

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I think I paid $100.

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I may have it confused with US & fibroscan cost, but that’s close enough. Almost every time I go to Dr my bp goes up. He decided since I had just been diagnosed with PBC, he needed to order that test. Glad he did. 😊

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Colonoscopy too.

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Besides regular labs, LFTs and GGT, that I do 2-3 times a year, I also have:

1 Dexascan every other year. 1 or 2 a year, shear wave elastography ultrasound (SWEU). Vitamin D, twice a year.

Never had fibroscan. My doctor says it is not as accurate as SWEU.

I'm in the USA.

Thanks.

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CT scan, 1 annually kidneys. Sheerwave elastography 3 yearly.

Vitamin D annually.

Diabetic, screen annually.

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Ultrasound (only 1 done at diagnosis)

Fibroscan (annually) results 3.6, 4.9, 4.6 kpa

Anti-mitochondrial M2 antibodies (1 done at diagnosis) 10.7 positive titre 1:160

Normal liver function tests every 6 months

GGT - gamma-glutamyl transferase

ALP - alkaline phosphatase

AST - aspartame aminotransferase

ALT - alanine aminotransferase

SERUM TOTAL PROTEIN

ALBUMIN

GLOBULIN

INORGANIC PHOSPHATE

BILIRUBIN

have also had checks done for bone density, vitamin b12 and vitamin d at diagnosis.

I’m in the UK.

An app which we could use to plug our results into would be so useful! Would the app have the normal ranges in it for comparison...or the ability for the user to input the normal range in? As I think these vary between screening labs.

Best wishes

Hilary

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Hi Hilary

Our current app already has that function. Have you joined the PBC Foundation? If so, you can download the app.

The new app will have even more functionality. We are trying to include non PBC tests that PBC people may need. Approx 40% of PBC patients have at least 1 other autoimmune condition so we want to incorporate some of the more common tests.

These answers have been incredibly helpful.

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Thanks Robert,

I did join the foundation when I was diagnosed but can’t seem to log on. It was on my old email which I haven’t got access to anymore, so I’ve reregistered. I’ve had a confirmation email but no log on details as yet. I presume they’ll come through in a day or so. Once they do I’ll download the app...sounds very useful.

Many thanks

Hilary

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Hi Robert

LFTs

Renal

Bone profile

Us scan every 3 months

Checkup every 3 months with hep

Fibroscan yearly

Endoscopy every 3 years

Dexa every 3 years

Nonresponder to uso currently

On clinical trial up in Birmingham

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Thank you. What is included in the renal set please?

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Urea

Creat

Na

K

I think that's renal

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LFT s = every 6 to 12 months

Thyroid function = every two months

Dexa scan 1

MRI 1

Catscan 2

endoscopy 1

colonoscopy 2

coeliac 1

Biopsy 1

Fibroscan 1

Ultra sound around 6 or 7 times

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Apart from usual tests as listed above, (liver related) I have had 2 dexa scans lumber -3.5 hips -1.3

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I am in the UK diagnosed 2006. For a while I had no treatment from specialist. Found one in 2016 and since then he ordered

1 endoscopy

1 dexa scan

1 ultra sound

annual blood tests PBC specific

about to have a colonoscopy - not exactly PBC related but possible auto immune related

Thank you Robert, good luck with this endeavour I think we all appreciate how much you do for us.

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Hello butterfly, may I ask, when is your col'oscopy, and please would you let me know what regime you are asked to follow for colon cleanse? And would you let me know afterwards when you are over it how you fared during the preparation? I have had one each year for several years now. Colon has improved and shows no inflamation recently (improved diet? Urso?), but I find it an exhausting business and plan to be super-lazy after them for a couple of days. Best wishes, I hope you are feeling well at the moment.

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My assessment is 31 January, and will not know until then when the colonoscopy will happen. I will make a note on the calendar and get back to you once I have had the colonoscopy. I am in the UK and not sure how long the waiting list will be. As a retired person I can "plan to be super-lazy" afterwards :-) thanks for the heads up on that :-)

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..also retired in uk. Thank you for your reply. Very best wishes for this event. Don't forget to have a tasty little something for recovery/blood sugar afterwards! x

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1. Dexascans to monitor my osteopenia/osteoporosis

2. Thyroid blood tests for my underactive thyroid

3. Blood tests to monitor my coeliac disease

4. Blood tests to monitor blood sugars

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Hi Robert,

Regular checks since diagnosed:-

Dexa scan (2 yearly)

Fibroscan (2 yearly)

Colonoscopy (yearly)

Blodd tests PBC related (yearly)

(i had one test to evaluate extent of nerve damage, will update you when I can on specifics of this?)

Thank you for collecting this data to help us.

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NCV nerve conduction velocity test (to show extent of damage to nerves)

EMG electromyography (to show how well the nerves are informing the muscles)

for clarification on my first list, dexa and fibro scans are repeated every two years.

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Hi,

Every three months:

Hematology Panel

PT-INR

Hemoglobin A1C

Albumin

Alk phos

ALT

GGT

Creatinine/eGFR

AST, Bili Total +Direct

IgM

Annual:

Glucose Fasting

Lipids

Every couple of years or so:

abdominal ultrasound

Had twice when requested:

Fibroscan. My GI's office uses it more for patients with Hep but they have the machine on-site.

Other tests, e.g. Bone density maybe every two years or as needed. Have had a thyroid biopsy and thyroid level done but this isn't part of the regular Q 3months testing.

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I’ve had 2 ultrasounds, fibroscan, 3 Ct scans and 1 endoscopy and another one scheduled next week. Usual bloods done every 3 months I think that’s it.

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1. Magnetic Resonance Elastography (MRE)

2. Ultrasound

3. CT Scan

4. Fibrosure Blood Panel

5. Comprehensive Metabolic Panel

6. All Thyroid tests

7. AFP

8. GGT

9. AMA

10. Sedimentation Rate

11. Urinalysis

12. C-reactive protein

13. Vitamin D panel

14. Vitamin B12

15. Thyroglobulin Antibody

16. Mammogram

17. Pelvic Ultrasound

18. Lipid Panel

19. Ferritin

20. Hemoglobin H1C

21. Anti CCP, IgG

22. ETA Protein

23. GFR

24. Lipase

25. Prothrombin Time

26. Microalbumin with Creatinine

27. HCG

28. ECG with 12 leads

29. Tryptase

30. F-Actin AB, IgG

31. Ceruplasmin

32. Hepatitis Panel

33. Iron Profile

34. Rheumatoid Factor

35. Tissue Transglut AB, IgA

36. Cardolipin, IgG, IgA, IgM

37. Creatinine Kinase (CPK)

38. RNP Antibody

39. G6PD

40. Hexagonal Phase

41. Aldolase

42. Double Stranded Antibody, IgG

43. ANA

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I do lipids panel, glucoses panel, thyroid hormone, micronutrients testings every 6 months.

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Dr. Gish recommends vitamin A, D and E testing

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Full bloodpanel twice yearly on chemistry, blood etc: liver enzymes, bilirubin, hematology: monocytes, leukos, pro thrombin, INR + a talk to discuss findings with hepatologist

Vitamins and iron only once when I requested it with my general physician years ago

Dexa scan after I asked for it (changed hospital three years ago and there was non done at initial evaluation)

Other tests for overlap syndrome done years ago upon request of rheumatologist s CRP AMA Ana, several biopsies

Other tests done upon request from other specialists for more specific issues several colonoscopies

The system here in The Netherlands is imho quite chopped up, care is divided over too many specialists and to see each of them a new referral and wait is needed. Organization of that is in the hand of the patient. Robert the guidelines you have published helped me a great deal to navigate this system and insist on the needed tests. So thank you very much for this again. You all have had such a positive impact on my life.

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Dexascan, abdominal ultrasound, mammogram and liver biopsy when necessary

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I have had ultrasound, fibroscan and dexa and bloods.

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I only have blood test done before I see my specialist that's usually once every eight months should I be having more tests done

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Do your doctors feel every 8 months is appropriate? I would feel more comfortable every 3 months. But every situation is different. Discuss your concerns with your specialist or GP.

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That is a good question.

The answer is very much dependent on your personal circumstances. There are times when 12 months is the most appropriate interval and there are times or patients where 3 months is better.

Feel free to contact us directly and we can help.

Robert.

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Hey Robert,

Fibroscan, DexaScan, Bloods checking for LFT, GGT, Vit D

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