Hi, I hope everyone’s day is great, Isn’t this usually the impression we try to hide behind when we’re not really at our best?
Hopefully it will apply to a huge amount of you all, to the rest of my lovely friends on here, I wish you all a pain free manageable day. You truly are special people.
These are the results of my bloods taken last month, I was back in today for more and was given these results by the nurse. Does anyone think they are way off or ok? Next appointment at GI consultant is June, so not sure if I need to go see my GP first. Thank you, Jane xx
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You make a good and interesting point! I've been having "a great day" for a while now Today I had a glimpse of "the real", how I'm truly feeling, and it was scary. I thought about what I can do to bring the pretence in line with reality without feeling sorry for myself. I haven't come up with an idea yet, just the realisation that it's damaging for us to pretend to feel ok when we are not. It separates us from ourselves, never mind from others. And that's when things look far worse than they ever could be in reality.
About your bloods, Robert has posted, and it's on the PBC F website, about how these can inform us only by trend, not by individual reading, so it's only when a level is repeatedly increasing or decreasing that anything meaningful can be read from it, and by an expert. More than this, I don't know, except that comparing mine and yours wouldn't tell us anything useful either!
These are last month's results according to the date at the top aren't they? Are they the same today? If you are worried, why not see your gp, not because of test results but simply for reassurance? Best wishes.
Thanks 220681ok, I’m often asked how I’m feeling, but tbh nobody wants to give their moans n groans. It’s usual for me to say I’m fine, when I honestly feel like I’m about to fall asleep or cry in pain.
I had bloods taken today but won’t get results for a few days. Last months blood results were given to me then too but I’ve put them in 1 of my safe places. Which will prob never be found again. But I’ll ask my gp when I see him to allow me access to all my info online.
Thanks, hope your feeling more human soon, that’s how I describe it to my hubby, I’m not human today.
I feel rubbish today. House a mess, can't either start or finish anything, only eaten passing through kitchen, dog had such a short walk she was dizzy turning back so fast, trying to find a question to ask the haematologist on Friday such that I'll know a bit about why my platelets are going south and if treatment is needed, what are the options. (Maybe you just helped me find my question...!) Thank you Jane. You are very human.
I found my other results, that’s good for my brain xx
Have you ever spoken to Collette or Robert? If you have, you'll know this, but if you haven't, please do so asap. They are very caring, at the same time absolutely on top and all over where a person is at with regard to our PBC issues. Speak to Collette and you'll know that you have been helped, moved on to a better and clearer perspective. She'll have the drains up over any issue you present, and get it all running clear again! xx
No I’ve never spoken with either of them, I have messaged Robert a couple of times and he was fantastic. I will do, I just never like bothering them as they’re so busy. But I guess that’s not what they want us to feel. They are amazing.
Are you feeling any better? I don’t eat much during the day. I live on fruit scones and yogurt. So I understand. Take care and look after yourself. I’m always here for a yap anytime. Xx
Hi, How often do you have the injections? Do you find when it’s coming nearer the time for the injection you begin to flag. I hope it’s nottoo long.
Feet up and relax is the order for the day, no housework or stress. Remember to eat doesn’t need to be meals as snacks seem to keep me going. Best wishes Jane xx
Every two months at present. If you haven't been tested, I strongly recommend as B12 deficiency is common in PBC, especially in later life when the body's ability to absorb it is waning anyway. It's important not to have too much in case it masks emerging other causes of fatigue, e.g thyroid. Fatigue is my worst symptom. It shows mostly in not being able to think clearly. A few days after a shot of B12, and I can finish a crossword puzzle that had me beat before. I like to do that test. It shows me plainly that there is a medicine that works and my brain hasn't died, which is how it can feel at worst. It's not just thinking that becomes clearer, it's putting one foot in front of the other without feeling that I will fall over because it's not clear to me at times, where I am putting my foot. The sun has come out and I'm off for a walk! x
Alk Phos under 200 for pbc patients is considered okay per my hep. GGT is known to be elevated as aligned with pbc. Not sure what is the acceptable level. But I think it is not a metric doctors really track. They usually don’t run tests for ggt except at the exploratory stage when diagnosing. I may be wrong but I vaguely recall my doctor telling me that when I asked about ggt.
I see your other lab results photo (April result) on your other thread.
So, your Alk Phos is headed down-- which is good!
In March your Alk Phos was 166 and in April it's 155. (normal range at your lab is 30-130)
Hopefully my old eyes are reading your photographs of results correctly!
So keep on the URSO and as others can attest you have to give it more time on URSO to gauge it's effectiveness. Hoping they will keep testing and following it up. I know my numbers fluctuated over the first year on URSO. And bumps up and down seem common among us.
And as Haley said for people with PBC just keeping it down under 200 is considered "good". Don't worry about pretending with us... We ALL get it.
just moved on to this post and now understand your comment about posting pictures together . A downward trend is a good indicator as the others have said and a good suggestion that URSO is working for you.
Yes it's the overall progression of the bloods test... My alp was off normal for years... It was actually the bilirubin and other symptoms that the liver bods seem to watch when pbc gets worse... So I would try not to be too worried, but worth asking consult to review the pattern for you.
If it's too long until your next consultation ring the secretary and ask for the consult to look at it for you..
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Today I had a glimpse of "the real", how I'm truly feeling, and it was scary. I thought about what I can do to bring the pretence in line with reality without feeling sorry for myself. I haven't come up with an idea yet, just the realisation that it's damaging for us to pretend to feel ok when we are not. It separates us from ourselves, never mind from others. And that's when things look far worse than they ever could be in reality.
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LFT normal but AMA and ANA positive, sorry long post.. 
Abnormal LFT (potential PBC) and prepping body for IVF
