Not a whole lot to report with my labs. Alk-phos still fluctuates between 140's and 170's. Interestingly, the less I weigh, the better the Alk-phos number. I'm in an RA flare right now and I've been on steroids. Needless to say I'm gaining weight!! My Alk-phos did come down from 162 to 157. Everything else still in normal range except my AST, it's 13. It was 13 eight weeks ago too. Don't know what that means???
The surprise came when my husband had his physical recently. He'd been putting all his check-ups off because of me and my health issues. Shockingly, his liver enzymes are elevated too. His Alk-phos is normal. His AST, ALT and bilirubin are all elevated. He's been overly tired a lot but we thought it was age and he does work hard. He also has sleep apnea.
So... he'll be seeing his doctor next week as we're still waiting on other labs to come in. Still, this was a surprise. We're not drinkers, never have been. Me, not "at all" since diagnosis, and Joel only occasionally with dinner when we go out.
He has farmed his whole life (chemicals) and we do run a small floor cleaning business (more chemicals) but I'm not around those at all, ever. However, we do live in the country with farmland all around as far as the eye can see. And, we do have well water. Only relatively recently did we put in a water Osmosis System. So who knows???
Could chemicals be the culprit??
Stella ❤
Above... Me and Joel this past weekend at a special event.
Written by
Ktltel
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Great photo and you both look so well, I sincerely hope your husband's results come back soon and that you can get sorted.
You comment about chemicals - interestingly there was a request in the Liver North news letter asking people to send in the list of ingredients on the back of products being used. It is on page 12.
The one constant chemical I have used is hairspray but I have emailed them ingredients to help with their study. If you have a problem with the link let me know.
Your AST should be fine, check the labs, normal range.
“Normal levels of AST and ALT may slightly vary depending on the individual laboratory's reference values. Typically the range for normal AST is reported between 10 to 40 units per liter and ALT between 7 to 56 units per liter. Mild elevations are generally considered to be 2-3 times higher than the normal range.”
Also it is good the alk phos went down. My hepatologist told me that <200 in pbc patients is considered normal.
Thank you for sharing the photo! Great looking couple. Hoping that hubbys tests show something simple and easily treated if needed. Your numbers sound good.. stay positive!
Lovely photo Stella, you both look so happy, loving and healthy. I hope your levels settle: the weight loss info sounds really promising - keep it up. I also hope your hubby gets some answers quickly and that it's all okay.
Remember, have fun, do things you love, try not to stress, and we are all here if you feel down.
Stella, you are so pretty. I’ve been on Urso since diagnosed a year and a half ago. My alk phos was in the 400’s prior to Urso and was brought down to 150’s within 3 months. It stay there and my dr said it’s not uncommon for it to do so. Many people with PBC will never have normal alk phos.
I believe toxins/chemicals has a lot to do with any autoimmune disease. A friend of mine has RA, you can see her knees swell up when eating non-organic chicken. We now eat mostly organic, especially the ones on dirty dozen list. We installed the whole house water filter system,s plus reverse osmosis under the counter. Toxins can be absorbed thru our skin.
Have you been tested with Epstein Barr? most people have it in their life time but it can be reactivated again.
AST 13 is a great number. Normal range is 0-40. If I remember correctly, you take Alpha Lipoic Acid, right? I take 600 mg along with low dose milk thistle (don't remember the dosage). It helped with lowering AST and ALT but not ALP. (my ALP was never out of range though).
My doctor wants me to add N-AcetyleCystein (precursor of glutathione). I have not started yet. It helps with overal detox. The next step would be taking liposoml glutathione. However the best is for your body to create its own.
vitamin C is also important for detox. Pure Vitamin C by Allergy Research is good if your stomach can take it, otherwise I use liposomal C. My last resort will be IV vitamin C (make sure your G6PD is normal )
Other supplements in my detox protocol includes Selenium, Methylated Bs, Calcium, Magnesium and Zinc. Vitamin D3 and K2 is important but too much Vit D can be toxic. I get it checked every 4 months. my level is too high now so i reduced to 1000 iu.
Another thought, have you tried to remove gluten, dairy and sugar from your diet? Some doctors say try it for a month to see if it makes you feel better.
Thank you for all that valuable information. I'd forgotten about some of it. I'm out of Alpha Lipoic acid at the moment. I will start Vit C here soon. It's hard to find reputable and excipient free companies.
just thought I'd pop over to your page. And there you are! You and your fella are such a cute pair! it's a great photo! i decided to head over to here so I can sign out on my actual name! Thanks for your email earlier. So sorry to hear your tests confirm PBC. But I do agree we just have to get on with it the best we can. l hear too tests can vary...so maybe the next one might have better news for you. So far my results have remained improved after taking Ursofalk. Is there a difference between AMA and AMA -M2? I am still pretty ignorant. I wrote my Gastroentologist a letter after my last test pre-christmas. I had enquired about whether there was any news on the status of my continuing negative AMA activity, and the possibly PBC or maybe PSC status i get. At the same time were PS to be suddenly confirmed it would make a difference to me. So thats the limbo bit for me. He responded that nothing was clear still but he could refer me to a Heptologist if I wanted. I now have at least three Heptologist names and an offer of another. Yet I wonder does it matter, what I know- except to be potentially more worrying when I have got to a place of calm about this!? It can't change what's happening -I will just have more details.
As for chemicals you mention here. I do wonder, I grew up in a heavily industrial part of london, (60s/70s). Also, I have used some questionably safe art chemicals, and have been keen on painting and decorating my whole life. As a young person I just loved the smell of turpentine an household paint! So another who fits the autoimmunity credentials.
I am 59 since late january. And you know between work, family (you might remember my daughter is also Stella! I chose her name, I have a son too- both adults) , pursuing the stuff I like doing for pleasure. Life is just going on as it does which is mainly ok. It's taken me some time to cease focussing on how short it is. This is not a perspective that i can allow an more time for!!
I do hope Joel does not have any worrying news, i have to say ye both have gorgeous cheeky smiles in that photo! I am so lax myself here in figuring out how to post one up.
Take care, Nerina (Nerina Ann, born 29th Jan; so Ann29)
We're good. He doesn't see the doctor for another week, 8 days. They're gonna do more labs at that time. His doctor is a general practitioner so, we may need my GI to see him in order to really find out what's going on. But, for now, he's feeling OK. A little tired. Guess we'll know more by the middle of the month.
We'll know more after he sees the doctor again in a week. They'll do more labs at that time again too. We may need to switch him to my GI👍. He's seeing a general practitioner at the moment.
Great picture. Stella I believe everything we eat drink and breath, including through our skin is processed by our livers. I’m ravenous most all the time but I do yoga daily and lift weights. I take every opportunity to jog wherever I’m going, always take the stairs, walk my dog every morning and every night, don’t eat much meat, avoid alcohol. My enzymes are above normal but hepetologist said hold off on taking Ocaliva since enzymes are so close to normal. I’m symptom free, just little bouts of itching every couple of weeks. Steroids are supposed to be good for inflammation. I took some for a rash I got from my raccoon. My enzymes went down to normal but I gained weight too. It looks like you have a nice attentive husband. You are lucky.
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