Anyone having Hemoglobin problems?

[Miamomma]

I have been having liver enzyme elevations since 2015. Never real high like some I see in these posts. On one 500 mg URSO since March 2019. All liver labs currently are within range. My Ammonia was 70 a month ago..on massive dose of Lactulose...currently it is 25..yay! Does anyone know if PBC causes low hemoglobin or has any effect on your hemoglobin? Mine is very seldom up to 8. Blood tests showed yesterday that my hemoglobin was 7.0...if I would have it tested today, it would probably be 7.5. Just wondering if liver disease has and bearing on hemoglobin.

[PBCCarol]

That is a very low dose of Urso? Did your doctor base it on weight as it should be?

[Miamomma in reply to PBCCarol]

No...initially my gastroenterologist put me on 500 mg 2xs a day, but it made me nauseous. She then put me on one 500...numbers fell into range. She then transferred me in December to Ohio State head of hematology to make sure she wasn’t missing anything. Saw him once...I am to see him in six months from initial appointment (in June). I felt as if it was a waste to see him. In February I became disoriented and dizzy. I fell...ended up in the hospital for 3 days. My ammonia level was 80 and hemoglobin 7. Called the hepatologist to see how to get my ammonia level down...RESPONSE: “I don’t have anything to do with ammonia or blood labs.” My GP found that answer incredible and said they will take lead in my care. Feeling kind of abandoned.

Carol..even though my hepatic screen numbers are within limits, should I be taking more Urso for my weight.

[PBCCarol in reply to Miamomma]

Some people have problems taking the full dose at first and cut it back but you should discuss with your doctor getting it up to full recommended dosage. The 500 mg tablets are scored so they could increase you by 250 or the whole second pill. Also the stomach issues some have are from the different fillers used in the generics made by different manufacturers.

I am not a medical professional just a patient but if your ammonia levels are going high you should be looking further at why

[Miamomma in reply to PBCCarol]

Thank you, Carol. I weigh 160 pounds...I think I’m supposed to be taking 500 x4 a day. My Lactulose was tripled and the ammonia level went to 18 on 2/24 and is now 25 from blood draw on 3/5.

[PBCCarol in reply to Miamomma]

I believe that is the correct dose for you. Hopefully the lactulose will keep your ammonia level down.

[JanetH67]

I’ve had low hemoglobin in the past and it was directly due to chronic, slow, GI bleeding (ie my blood was ‘weeping’ through varices in the gut), due to a condition called GAVE (gastric antral vascular ectasia) which is not common but it does happen. Google it and maybe ask the heptologist/GI Dr). It is fixable. It requires many scopes to investigate it and procedures to eradicate it, but it’s fixable! 🙌🏻 (Just à suggestion, as hemoglobin doesn’t drop usually unless you’re bleeding somewhere)

Sincerely

Janet

[Miamomma in reply to JanetH67]

Thanks JanetH67. I have had several EGD’s at various times along with colonoscopies. They show nothing. Went to my first Hematologist appointment yesterday, He took labs and called today. My hemoglobin is 6.9 and my iron is 21. I go back to his lab tomorrow and next Friday for a two part blood transfusion and iron infusion. I will research the information you gave me. Thanks again,

[JanetH67 in reply to Miamomma]

Yes I had to undergo 2 years of transfusions to keep me ‘topped up’ until the Drs discovered this GAVE was the cause for my steadily declining blood counts. It was a nuisance but I always felt better (after) 😊

[OdinsMom]

It is fairly common for someone with PBC to have anemia. Personally I never have but mine has always run very high. Try a cast iron cooking pan, beets, raisins, spinach etc to raise it naturally. Why only 500mg of urso? Dosage is weight based. 13-15mg per kg of body weight. Long term slowing of progression is based on this dosage