I have a few questions if anyone can help or advise. The more I read on here I can see the connection with my own pains. I have had PBC for 10 years this year, so far I am on no treatment but this year I have felt a lot of changes within myself.
1. I have had Osteitis of my left clavicle for 2 years now, this is an infection of the bone and is a immune condition. Could this be linked to PBC?
2. I have been really tired and finding it depressing with how tired I am, every weekend I need a afternoon nap, I am 33! During work I just slow down. If I don't have a sleep I feel so sick.
3. I have had quite a few dizzy spells, it could happen when I stand, walking, sitting. Had test vitamin D low.
4. For the past 6 months my periods have gone up the wall, had bloods and scan checking for Cancer, all clear thank god but they still don't know why. My Cholesterol is 6.2.
5. Wrist pain, pain in back when standing, pain on left side of back.
6. Urine dark all the time and I drink plenty of water. I have also had flutters in my stomach it reminded me of when I was pregnant.
I know I have a lot of questions sorry, but you are the best people to ask as you may be experiencing one or all. I see the consultant in March and I am just going to tell him all, a lot of the time I say I am ok.
I have lost 23lbs in 4 months as I thought this might help with tiredness but it hasn't changed.
Any advice I will be thankful.
Thanks in advance xx
Written by
Fudger126
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What I cannot understand is why you've never been prescrbed urso if you have PBC. The only thing I can think is that you've usually had normal liver function tests (LFTs).
Back in early 2010 I started itching, was working full-time and above the hours of duty and fatigued. I thought it was due to overwork (I was 46 then). Started having blood tests that showed abnormal LFTs. Following a scan several months later and then towards the end of 2010 seeing a hospital consultant who took the AMA blood test, I had a diagnosis of PBC Dec 2010 and started on urso. My LFTs have gradually been dropping in the last 3 yrs. I managed to lose the fatigue back in 2011 and just left with night-time itching.
Early 2013 I started going through the change (perimenopause it is apparently known as). I've not taken any notice of my monthly cycle due to the fact that I am not far off 50 now so it is about the right time. My cycle now has a changed slightly in the last 12mths., one month it is 38 days, the next 28. Apparently from feeling the hot flushes at times I am fine there at present. I don't relate to this with having PBC. But I supposed as the liver has something to do with hormones, it could perhaps be if you are suffering problems but I cannot say.
Pale stools and dark urine are apparently common in PBC. My stools did look a bit pale pre-urso. I found out that pale stools mean that there is not enough or no bile present in them as that is what apparently gives them the colour they normally are. Not sure about the urine as yet not a sympton I have. (I do think urine changes though when you are on urso as I expect some of it seeps through into urine as a lot of meds can.)
Your Vitamin D level and also your tiredness does appear to be common with PBC. Due to Vitamin D being low, it can have a knock-on effect with our skeleton as it is needed for the bones. Mine checked out what the consultant said 'a bit low' back in 2010 but it was on the lowest line of normal and I had no supplements. I had a recheck just after summer 2011 and it was perfectly normal as being out in the sun more helps our body manufacture it.
A question I would find out is how abnormal your LFTs are (I request print-outs each time I have mine done, have since diagnosis as to me the words, "a bit low" (as in Vit D) don't actually mean much, I wanted to see a figure). I would also ask how it is that you are on taking urso.
Seems odd to me, you can't invent dark urine unless of course you eat heaps of fresh asparagus and beetroot!! Do you keep your blood test results so you can go back over them and watch what, if anything, abnormal is happening??
Do you even know what your test results are, some Doc's just tell you it's OK but don't offer a paper copy or even elaborate on what OK means in your case.
I think you should ask your GP to do lfts before you see consultant, so they are available when you see him. Also tell your GP everything, ditto Prof Neuberger. I'm surprised you are diagnosed as PBC if it is just +ve AMAs, but if it was 10 years ago, they were often more ... all encompassing / 'playing safe' . Also I agree with others here that 'not too high' is surprisingly vague. I've just taken the move of requesting my results as a printout, and I think you should do this, and ask for back results too. Check them against what it says in the PBC booklet, or find online. Given the tiredness and dark urine I think you should expect a bit more action. See your GP. Don't know about the osteitis - do you see a separate consultant and have specialist treatment? Different autoimmune conditions don't necessarily have to be linked, but I don't know.
I have never been given my blood results, and with them saying there ok I just leave it as that. I guess because I have had it so long now I am happy to hear all ok. I am back end of March for a ultra sound and see consultant. It has only been the pas 8 months that I have been feeling this tired.
Thank you for all your advice, I will ask for my bloods next time, I need to look up what the healthy Lft's range is as I don't know.
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