Hi Ivanik , I was first diagnosed with PBC 13 years ago after being wrong lycra diagnosed & treated for high cholesterol for 2 years prior because unfortunately PBC can give off a high cholesterol reading even if you don't have it . It wasn't until I had full bloods done for age related health check that they found my LFTS to be high & sent me to a liver consultant where after tests I was diagnosed with PBC .Like you I became very anxious & worried I'd never heard of this disease & it really takes some time to get your head round it ( reading things on line is not always helpful by the way ) if your consultant isn't worried you shouldn't be . I too started having palpitations & also panic attacks but they could find nothing wrong , I had many ECGS blood tests etc but nothing , however it did turn out after several blood pressure monitoring that my blood pressure was spiking at different times of the day but showing up normal other times & it was at at the spike time's I was getting the palpitations & panic attacks . It was advised I should take blood pressure meds but I refused I'd already been taking high cholesterol meds for 2 years when it was PBC & they couldn't say for definite I had high cholesterol you can get a false reading having PBC so I'd stopped those too ( I wasn't overweight my BMI was normal etc ) so I was taking meds just in case I might have high cholesterol & I felt the same with the blood pressure spikes so I made some life style changes & used breathing exercises for the palpitations & panic attacks .
May I add dips in blood pressure can also have the same effect so maybe discuss blood pressure monitoring with Yr gp .
You don't say how often you have Yr bloods done or what stage of PBC you are but rest assured when they do your bloods they check for many things that are related to PBC & liver etc so if anything else is going on it will show up . Blood pressure problems are very common with PBC but not always detected if Yr reading is showing normal when it's taken like mine was . Its not always easy to share our worries & fears with loved ones we don't like to be a burden or worry them too . But never forget you are not alone , many fabulous people to talk to on here , you can also contact the PBC foundation who offer the best advice & have all the upto date knowledge of PBC etc . Also never hold back with Yr gp/ consultant especially your consultant they are in the know & one thing I have learnt is if they aren't worried neither should we . Pamper yourself more , take time out for yourself , use relaxation techniques to help . I wasn't a reader but I took up reading & found losing myself in a book made a huge difference because overthinking ( which is something we can all have a tendency to do ) is so unhelpful & detrimental to our health so giving the mind a rest with something you really enjoy doing is so beneficial whatever it is !
My worst fear came to light when I needed a transplant , I am now nearly 4 years post & yeh it's a roller coaster ride & still can be at time's but life is good , I'm alive & kicking and try not to waste a single second of what might be or will be I am living proof that worrying solves nothing so I don't and live everyday to the fullest & have done since way before my transplant & both my palpitations & panic attacks stopped many years ago it is surprising what effect the mind can have on the body if we overthink & work it . I am always here if you need to talk as I'm sure many others on here are too . Please take care of yourself ...wishing you all the very best x
Has your doctor run full blood tests including vitamin B12, I was diagnosed with pernicious anaemia after complaining of pins and needles in hands and feet? If they have not checked you for B12 deficiency do ensure that for a couple of months before the blood test that you have not been consuming any B12 in the way of herbal supplements.
I was diagnosed with PBC back in 2006 and thanks to the regular taking of URSOdeoxycholic Acid I believe I remain reasonably well. I try to eat a sensible and clean diet similar to the Mediterranean diet and exercise when I can.
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