Delighted to let you know the newest new version is out.
A few nice additions, some improvements, easier log in and registration.
Be part of the community voice!! Take part in our surveys and make sure your voice is heard. Already patients in 22 countries adding their voice to the collective.
Learn a tonne of stuff about PBC. Read the latest guidelines, etc.
Track your symptoms daily. Also track your test results as you need to. Not just your PBC tests but things like thyroid, cholesterol, etc.
ALL FOR FREE.
Available at both google and apple stores. You know you want to...
Written by
PBCRobert
Partner
To view profiles and participate in discussions please or .
Thanks Robert. I am pleased that I can now go in and input my tests as it was an issue on my android 'phone. Can I make a suggestion though that you enable test results to be typed in as opposed to on a sliding scale or in addition to that as an option. I have a slight tremor so it makes it difficult to get an accurate reading input. Thanks again for all the good work on the app. It is very useful.
I have also found some tests I can't put in because the g/L, iu/L etc are different from what I've been given and I don't know how to convert e.g. white blood cell count. It's not a big issue as the key tests are all there and consistent with what comes back from my test results. Thanks again.
The app shows White Cell Count (cells/cubicmm or microlitre) my test results come back as (a weird one) 10*9/L with a normal range of 4.00 - 11.00. Maybe a totally different thing! You might mention that if you have to move the slider along quite far to the right it sits over the results box so you can't actually see what you're inputting until it's done and then it's not easy to get the correct reading in. I found it when I was accidentally putting a test result into the wrong box! Thanks.
Also Bilirubin - app quotes micromol/L, my results are umol/L - haven't a clue if these are the same thing or not but I know my results are right at the bottom of the scale whilst being within the normal range which (according to my results) is <21
PBCRobert - I have peripheral neuropathy. It reduces the effectiveness of contact between the fingertips and device. I have the same problem with hob and cooker controls and thought it was due to not pressing hard enough, but it isn't! The slides on the app are difficult for me too.
PBCRobert - thank you for this update. Totally unrelated, but just had e-mail from HU inviting to diarise how PBC affects me over ?8week period. A fee is offered for participation. The e-mail doesn't mention our PBC Foundation. Please can you say, what if anything do you know about this "invitation"?
PBCRobert - I guessed as much. I wasn't impressed. To say the least, not a lot of thought went into the "invitation"? I wonder how many others on this site have been targets?
I think it was 70 or 80 pound that was offered, I just didn’t think I was suitable because I have had a transplant or I probably would have joined it 😱😱
Kate50- are those little icons/emojis on your phone or laptop? I can't find them on my laptop, and I can't see them properly. They look like someone mooning, but it may be someone hands clasped to mouth in horror as that seems to fit better. I doubt anyone would want my daily notes... I definitely don't know the way round a keyboard. I hope you are doing well?
Hi, sorry they are emojis, dangers of living with 3 teenagers, I use an iPad and iPhone and they are on the keyboard (a little smiley face emoji) press that and all the emojis come up, and you were right they are hands clasped to face in horror, xx
Oh...I completed this survey as thought it come from pbc site???yes over 8 days and I did receive a evocher for Amazon...it was the same questions I was asked when I did a clinical trial I’m worried now weather I should of done it???
Hmmmm, I also received the invite from Calvin@ healthunlocked re: the 8 day survey/ journal. It offered an Amazon voucher. In fact, I found the survey when I came to this site + each & everytime I complete the survey I am redirected to this site. It seems highly unusual to me that you have no knowledge of this survey. I began the survey based on the fact that it appeared to be from a reputable site. Mind you, I was also confused by the whole section that this site is not the PBC Foundation. I see mention of the fact that PBC Foundation sponsors this site. Greater transparency & clarity would be greatly appreciated!
Thanks, Robert. I did a Google query re: premarin + Urso interactions which directed me to the Healthunlocked / PBC Foundation site, where a survey showed up as an overlay asking if I was interested in doing a survey. I am pretty tech savvy & looked at this site and believed it to be reputable so I signed up for the survey. I recently underwent a desensitization protocol for an anaphylactic allergy to URSO & the effects post desensitization have been just short of nightmarish! Extreme itching, pronounced fatigue and increased allergic response to many stimuli put my body into a state of overload. I was eager to share my experience with any outlet, be it a patient run advocacy group or drug company, because my journey has been arduous with limited communication from my personal Hepatologist who remains highly regarded in the field. I have found that I have been left with so little information that I had to become a "lay Hepatologist!".
I thoroughly vet my resource information in an effort to avoid the rabbit warrens of misinformation which abounds. I was surprised to happen upon this post + the other post re: This is not the PBC Foundation. I am glad that I have ultimately discovered these facts, however, it is NOT abundantly clear to the user.
I take no issue with this site or PBC Foundation. ANYTHING, anything at all, which helps those of us with this complex auto immune disorder navigate our own experience and the various medical systems, is greatly appreciated.
Personally, I have come across much conflicting information re: drug management. I have been on URSO (taken off due to potential anaphylaxis), off label use of Bezafibrate (taken off due to hepatitoxicity),& Ocaliva; all within a short span of 2 years and my disease has progressed rapidly. It has been a daunting journey... not to speak of the psychological / socialogcal component of a disease that alters one's life considerably! Merely educating folks on the fact that because "I look good doesn't mean I am good" can be an exhausting enterprise. Discovering misinformation in clinical notes about me has become almost laughable. I have yet to read ONE clinical note that hasn't gotten at least one salient fact wrong. Right down to being listed at a weight 40Ibs greater than I have ever weighed (important for drugs that are prescribed based on weight). I have reached a point of such fatigue both on the physical level & on the emotional level, I don't even bother to correct many of the glaring errors. Why take a patient history if salient facts are inaccurately recorded?! I realize we are all human & prone to mistakes.
Becoming expert at advocating on behalf of one's own personal health journey can become a full time task! My limited energy has Been sucked dry from the revolving cycle of the numerous specialists & other appointments which I now attend. My own research enabled me to diagnose another rare auto immune disorder which I have... where my medical resource team failed to make a connection! It was a condition which caused great pain & discomfort which I suffered for well over a year!
I have great empathy for those who are on the PBC medical journey. It is a mine field!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
PBC levels
Young PBC New Diagnosis
