All this has me thinking, I trial and error a lot here as a way of trying to get myself into optimum health. I do this because I feel like I'm forced to take control of it myself. Most mainstream doctors are all about meds and treating illness, NOT about creating health. There's a big difference in those mentalities and I haven't felt like I could really find a provider that would embrace health- unless it was a 'hippy' that other people wouldn't respect their suggestions. I would, since I don't think it it takes a piece of paper with MD on it to really understand the human body and how to help- It takes experience and a DESIRE to understand. But when you try to plead your case to others, if the person giving the advice doesn't have those two little letters, some people tend to dismiss them. I do have a few resources that I trust, but honestly I want someone local that I can trust and that I can AFFORD! So I'm researching. Looking for my guide in this journey :) I know I will find them, in this of all towns I'm sure...
So before I put up the numbers, I wanted to note the additional numbers I have. First I added albumin as I have found it is a very good indicator of liver health. I am in range with this one, but I'd like to work on lowering it since I'm really BARELY in range. Also, I added protein, it's good, but just keeping it here for tracking. Also, I added Bili Direct just as another indicator for bili. And the PT is the Prothrombin Time- this is the time it takes to clot. As the liver gets sicker, the time to clot takes longer and longer. So far I've only been getting this checked occasionally, but I've included it to show that my PT is good.
Actually, everything except the ALP is in range. This is definitely good. But I am going to focus on trying to get everything better. I'm hoping my Guide will have some good ideas for me.
| Date | AST | ALT | ALP | Bili total | Bili direct | Albumin | Protein | PT | |
| Normal | 5–35 | 7–56 | 30–132 | 0.1–1.3 | 0–0.3 | 2.9–5 | 6–8.4 | 9.6–12.8 | |
| 2/20/2012 | 235 | 389 | 937 | 1.7 | - | 4.6 | 8.2 | ||
| 3/6/2012 | 142 | 253 | 633 | 1.1 | 0.3 | 4.4 | 7.4 | 10.9 | |
| 4/16/2012 | 59 | 101 | 194 | 1 | 0.3 | 4.4 | 7.3 | ||
| 5/14/2012 | 36 | 56 | 160 | 1 | - | 4.3 | 7.2 | ||
| 7/6/2012 | 31 | 42 | 163 | 1.2 | 0.3 | 4.3 | 6.9 | ||
| 10/2/2012 | 58 | 113 | 221 | 1.4 | 0.3 | 4.5 | 7.4 | ||
| 1/31/2013 | 47 | 72 | 201 | 0.9 | 0.2 | 4.5 | 7.4 | ||
| 4/30/2013 | 36 | 44 | 188 | 1.2 | 0.3 | 4.2 | 7 | ||
| 7/30/2013 | 36 | 36 | 185 | 1.1 | 0.3 | 4.3 | 7 | ||
| 10/16/2013 | 32 | 39 | 214 | 0.8 | 0.2 | 4.4 | 7.2 | 10.8 |
I hope everyone has a great weekend! I'll update again soon!
Hi Tammy, thanks for sharing your experiences with PBC. I just wanted to make a suggestion that *might* help with the hair loss you experience on Urso. If you haven't already done so, have your doctor run a complete iron panel. Not just hemoglobin and hematocrit, but also ferritin, serum iron, % saturation, etc. If your iron stores are low, your body will sacrifice your hair before moving on to more important organs/functions. You can be iron deficient without being anemic, and your hair often pays the price. Mine falls out by handfuls when my ferritin falls much below 70, which is the level many dermatologists and hair loss specialists watch. Even if you've determined a direct correlation with the Urso, it's still worth checking out, as many autoimmune processes also predispose to iron deficiency. This one step pretty much solved my hair loss cycles, after years of frustration. Best of luck to you!
ReplyDeleteHi,
ReplyDeleteI have come to find myself in a quite a "pickle" without sounding too goofy! I was diagnosed with a 10.5 centimeter mass on my ovary in October of 2013. I was in surgery within 8 days only to be told that the mass did not exist (the good part) but that I had alcoholic cirrhosis based on a visual inspection by the surgeon. (who is no longer affiliated with the hospital) I also was an admitted 2 glasses of wine per night patient. After surgery I went into liver failure (ascites and decompensation) and so was treated as and alcoholic the entire time while never even being consulted by a social worker, which I though that was the standard protocol if alcoholic disease was apparent. (btw I was pretty sure I was gonna die for a little while) Anywho, I knew drinking wine every night was not good for me but in my gut it seemed to be quite an extreme consequence for two glasses of wine per night. But ok, I suck, I must have caused this. Then another doctor, I only switched because the first doctor operated on a paper report that said I had a huge mass that didnt exist, took a biopsy and said it was actually PBC. Now I am at one of the top 5 Hepatologist in the US and their pathology review shows inconclusive etiology. I am grateful for their expertise however I am now schedule for gallbladder and hernia repair. I only way 102 pounds but only 5 feet tall as well, I worry that I will never know what happened or what is wrong....How hard is it for you to trust the specialist? This is not a joke, true story, and am just reaching out because if eating gluten free foods will help, I would like all the info you have. I'm just desperate for "concrete information"......its okay if you dont have any, just figure i'd reach out and try : )
how are you doing after a year of writing this blog.
ReplyDeleteHi Tammy,
ReplyDeleteI've had PBC for 20 years and am stage 4b (ESLD) with a MELD score of 15. On xplant list for a couple of years now. I understand your frustrations and have shared them. I do want to suggest that, because URSO/Actigall has greatly prolonged my life (I was given 5 years in 1994), I would not wean myself off it at this time. I have found that taking each symptom and side effect and doing extensive research most often results in an alternative that works better for me. Regarding hair loss, I did very well with my hair until about 3 years ago when it started to thin and fall out. I found that biotin supplementation would stop the loss and allow my hair to regrow. That said, I tried megadoses and found that the biotin was causing my hair to curl, so I lowered the dosage considerably and now my hair is happy and I'm still on my liver meds. Please let me know if you have comments or concerns. This is definitely a journey and not always easy, but there is so much you can do to help your quality of life. Regards.
Thank you very much for this. I agree about not weaning. My latest numbers have me worried. I plan to take the full dose as prescribed. I will look into the biotin to help with the hair loss. Thanks!
ReplyDelete