Wednesday Words

[DonnaBoll]

The words this week I want to define are alkaline phosphatase.

Alkaline phosphatase (ALP) is an enzyme that is released by the bile ducts cells ( among other organs). The release of ALP is a marker of stress or injury. So the more injury or stress to the bile duct cells, the higher level of ALP is seen. It is used as a marker of the disease statis and when to begin treatment with Urso. Certainly the lower the number the better. Right now, as of 2023, the ideal targets are under 217. Hopefully in the near future the target number will be under 130.

An elevated ALP can also, as I mentioned, come from other sources - like bone. We will discuss this as well in the future Wednesday posts.

[Gaspereaux]

Good morning, Donna, thank you the explanation. I thought, for females, the ideal numerical value was 138 (in Canada)…my hepatologist said he would be happy to see it at 170. Is there somewhere where I would be able to show him this? Also, would that apply to males as well? Have a great day!

[DonnaBoll Administrator in reply to Gaspereaux]

Do you have Dr. Jones' book? I really use this as a Bible when it comes to PBC. He is the leading expert on this compicated disease. So many doctors do need to be educated.

[Gaspereaux in reply to DonnaBoll]

Just ordered it! Second edition! Thanks!

[DonnaBoll Administrator in reply to Gaspereaux]

it is nothing short of amazing --- and so easy to understand. When I read it I have a yellow marker with me to save what I need to remember. Let us know what you think after you've had a chance to read some of it.

[AHG123]

Just had a very frightening ALP result over 600. Completely out of the blue though I have had upper abdomen discomfort for about 3 weeks.

Awaiting specialist referral. Hoping for the best preparing for the worst.

Female 63. Long standing gastric acid and osteoporosis. Taking Lansoprazole and AdCal.

[DonnaBoll Administrator in reply to AHG123]

I hope you can get that lab work repeated... just to be sure it isn't a mistake. Scary though for sure... what has your alk phos been overall?

[AHG123 in reply to DonnaBoll]

March 24 -120

December 23 -98

Thank you for your reply.

[DonnaBoll Administrator in reply to AHG123]

Hoping you get it repeated soon -- sounds like it might be just a mistake. That is a huge increase for sure... let me know.

[AHG123 in reply to DonnaBoll]

Hi

Having a torrid time. After two CT scans an MRI and an EUS there is no definitive diagnosis. I had a stent fitted to the main bile duct two weeks ago. It has already been blocked/infected. I am home trying hard to eat carefully to stay out of hospital. Thursday I will be discussed by relevant specialists at York/Leeds to decide if they know enough to proceed with treatment or if I need to have the tests again. The consultant’s words were-we haven’t found any cancer but we can’t be 100% certain there isn’t any there. The EUS didn’t get enough cells. 🥲

Thank you for reading.

[DonnaBoll Administrator in reply to AHG123]

I am so sorry all of this is happening to you.... Thank you for sharing this with us though. As I live here in the states, I'm not familiar with your areas and all too often your health care. Are you being taken care of at a large teaching hospital? I have to assume these specialists are Gastroenterologists. Not having any answers is so disheartening. I can't imagine. Here in the states we have several health care centers as part of the Mayo Clinics. Repeating all of the tests doesn't guarantee answers though, right? Just make sure to write down all of your questions.. next time you go to the doctor, hopefully you have someone with you (if you don't already) - another pair of ears. I would think the bile duct blockage would cause the elevated alk phos... do they think so?

[AHG123 in reply to DonnaBoll]

Yes York is a teaching hospital as is Leeds which is bigger and better and they liasie.

The APL and bilirubin levels have reduced greatly since the stent was fitted. I am still in a lot of pain/discomfort on the right side under my ribs especially at night. I will try tonight not having anything to eat after mid afternoon just a fortified drink as prescribed with my last antibiotic at 7pm.

Thanks Donna

[DonnaBoll Administrator in reply to AHG123]

I'm glad you are at a large teaching institution. Makes me feel better about them being up to date on treatment options. That pain I would think is from all the inflammation from that capsule around your liver. That does feel pain... the liver has no nerve endings. It can be quite intense at times especially since we have those bile duct blockages. Does heat help?

[AHG123 in reply to DonnaBoll]

Yes I do use a heat pad.

I rarely describe it as pain but rather discomfort/heaviness/bloating.

The attention I have had from my local hospital has been severely lacking. They liaise with the larger hospitals’ specialists but that’s 1.5 hours drive from my home.

[DonnaBoll Administrator in reply to AHG123]

You're right about it being a 'discomfort' for some. Do you feel it would benefit you to actually go the specialists yourself? ask questions, see what they think seeing you in person? It if means getting some answers directly from them..... think about it. I know it takes me an hour to get to my hepatologist appointments.

[AHG123]

I am going to ask my GP about being transferred to a liver specialist. Here on our crumbling NHS on the two occasions I have been in hospital I have been seen by upper gastrointestinal consultants. I have spoken to my named specialist just the once.

To arrange to see one at a specific time you need to go private at a cost of maybe 600$

[DonnaBoll Administrator in reply to AHG123]

.... and I thought our health care system was bad in the US. Most GI docs do not know enough about PBC to really treat someone with this disease. Not sure I've asked you before, but do you have Dr. Jones' book? If not, please get it so you know the care you should be getting. It's available on Amazon. The Definitive Guide for Patients Who Have Primary Biliary Cholangitis. All to often we are taken care of by someone who doesn't know about this disease.

[AHG123 in reply to DonnaBoll]

Thank you Donna.

Because the main ‘blockage’ is close to the main pancreatic duct the pancreas seems to be the main area of concern.

I feel like the stent was blocked again but I cleared it by eating very little yesterday. Minor victories! I can’t keep doing that of course as I am wasting away.

[DonnaBoll Administrator in reply to AHG123]

I truly hope you get some answers soon. Please think about seeing the hepatologists in person.

[AHG123]

Hi Donna

Now almost 4 months since I visited my GP. After 2 CTs, 2MRIs, 2EUS’s and a PET CT the doctors are still saying it’s cancer but we can’t find it.

I was to be given chemo for pancreatic cancer but the PET CT didn’t support that.

Paid to speak to Prof Bridgewater at UCL thinks it’s cholangiocarcinoma.

My CA 19.9 was 106 recently.

I am on my third biliary stent and expecting a third EUS this week.

I am taking Creon to reduce distension.

😔

[DonnaBoll Administrator in reply to AHG123]

I am so sorry you read this. How scary that must be for you. I know this diagnosis is often hard to come by. so many tests, scans, lab work.... I'm not familiar with the UK health care. Are you being seen by someone who really knows about this?

[AHG123]

It’s been hard to get any continuity of care.

The Prof who I mentioned stirred things up.

[DonnaBoll Administrator in reply to AHG123]

I have sent you a message via the private 'chat' portion of the group.