Hi, sorry everyone, this is a bit of a rant as I need to get this off my chest...only you people on here really know what it feels like when you get your blood results.
I was diagnosed December 2015. I was lucky my PBC was caught early through a routine blood test as I went to the dr thinking I was feeling more tired than normal and fitness level had dropped off. I thought it was the menopause...but elevated LFTs showed PBC. Initially devastated I decided to find out as much as I could by researching the PBC foundation and enrolling on here.
I went to a herbalist friend who made up a herbal tincture especially for the PBC and I took my URSO. Gradually my LFTs came down and by January 2017 all were normal except for the GGT which had come down from 247 to 49 (just slightly above normal). I was so happy with the results I started to relax about having the condition. I wasn’t sure if the herbs did it or the URSO but I felt in control. I guess I got complacent and stopped taking the herbs (they do taste pretty horrible). I had a blood test August 2017. Surgery couldn’t give me a print out but said results were satisfactory.
October 2018 had annual blood test, rang surgery results satisfactory. However, when I requested the print out I could see numbers had spiked. GGT was back up from 49 to 148, ALP was higher than when diagnosed at 236.
I’m so cross with surgery for saying these results are satisfactory for known PBC...yes they might be but the trend suggests something’s going on. Sounds like my bile ducts are inflamed or getting blocked.
So, I’m back on my herbs and will discuss with dr next week. I just wanted to say how despondent I feel at having done so well and then get this knock back, I feel like I’ve got to start all over again trying to manage this disease. And now I’ve got menopause sweats on top of the PBC so I’m not getting proper sleep. Just feel like life is a bit of a struggle. I know I’m still lucky I that there are many people worse off but I just feel so tired. I also lost my dear friend Peridot a few weeks ago which was a huge blow and has made me fearful for the future but also determined to get on top of this disease.
Sorry for the time, just needed to offload. Xx
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Hils67
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I'm sorry you're not feeling great but I'm shocked at what you said about Peridot - you don't mean Peridot who frequently used to post on here and try and help people do you ??
Sorry to be the bearer of bad new but Angela (yes our Peridot) passed away at home 10th October...and although I never physically met her we used to write to each other often and I really miss her.
I want under the impression her pbc was that advanced such bad news. Maybe you could ask to be referred to a hep doc. Anytime u need a rant we are here. Xx
Not sure we have any hep drs locally...we’re in very rural West Wales. At the moment we’re fighting just to keep our hospital going...and losing that fight! I’ll see how
I live in South Wales and see a hep in Birmingham every 3 months. My gi doc referred as my lfts didn't go down after a year. Still took over a year for the referral to go through
Ah thanks that’s worth knowing. Crazy you had to go all the way to Birmingham, but good you got referred eventually. Has the hep been able to do anything to get your LFTs down? Xx
I'm so terribly sorry to hear this very sad news about Angela. She and I joined this forum about the same time years ago and she tried her best to help people at every opportunity. Angela often posted her blood results and revealed she had returned to the care of her GP as her PBC was so stable. She was such a healthy person who walked everywhere, cooked from scratch and seemed to be enjoying her life. I know she had a small granddaughter and she often described her walking holidays with her husband all over England. Was she ill with something else perhaps that she didn't want to share ? I know she received a lot of support when she decided to stop posting about a year ago.
Absolutely heartbroken to hear this news. She wrote to me a couple of times before she turned off this forum. She seemed to be in a little bit of a funk before she left and I was sort of hoping she would come back because I really missed her. This is really scaring me. I have been on this forum for just a little over a year and there have been several people who I really enjoyed following that have passed. Super bummed about it.
That's right Pam - I think Angela felt the forum had become something other than what it had been and she was disappointed perhaps. I feel she must have had other issues for her to pass away at such a young age. Her PBC cannot have been the cause.
I started to reply then got cut off. Did peridot decide not to have transplant?
I wish I had someone who lives close by who has this disease, this fatigue, this depression, this fighting spirit and resilience, like I do. This blog is closest thing!
Hils, remeral anti depressant has been shown to increase longevity and reduce inflammation from article I read, can’t find it. I’m still researching drinking baking sodas benefit to spleen to reduce inflammation and benefit PBC.
So glad you came here for support. No need to apologize for ranting.
I know we all can relate to the worry and frustrations with getting lab results and then on top of that the non supportive doctor system. Even though THEY see your numbers as being in "acceptable range" your concerns should be addressed.
I am 3 yrs post dx and I have seen here that women do report bumps up and then back down with labs.. so I try to keep that perspective but any time I have labs done I am bracing for level jumps.
So much of this disease is truly not in our control ( or so it seems to me)
We have to do our best with what we know and can control.. try not to stress ( I'm working on that- sometimes easier than others)
I know fluctuations are to be expected but it’s taken 3 years to get numbers down and now they’re back to where I started in just 1 year...so that was the alarming thing. But hopefully things will settle again 🤞. Xx
I'm so sorry to hear about the loss of friendship.. I pray your numbers stabilize.. ugh.. it's so stressful. All of it. I'm glad you came here to share. We care.
Hiya, I’m under a gastro doctor in the hospital, but he said he doesn’t need to see me again for another year as my fibroscan was good. However, I’m seeing my gp next week and will suggest to him I need another blood test in 3 months just to see if the herbs are making a difference. TBH my gastro doc doesn’t really offer anything other than routine checks, fibroscan etc. As there is no real ‘treatment’ as such for PBC other than URSO which I take the rest is trying what we can to alleviate symptoms through diet etc. Fingers crossed the herbs work 🤞. If not, I’ll just go down the liver cleansing diet route and see if that helps. If that doesn’t help I’ll just have to accept I can’t control it and hope it doesn’t progress.
I have a friend who is a qualified herbalist and she’s made me a tincture which includes milk thistle, nettle, schisandra, dandelion, lavender and shatavari and sage for the menopause sweats. The itching seems to have lessened a bit and I don’t think the sweats are as severe...or maybe I’m getting used to them!!
Angela was a huge inspiration and provided a lot of support to lots on here, me included. So very sad.
I guess you can look them up on a directory. Just make sure they’re properly qualified and fully knowledgable about PBC because some herbs can do more damage than good. If done properly I’m convinced they can help!
What is the herb tincture you take designed for pbc?
Same happened to me with blood tests and self care, same. We have to stay diligent with our self care as we age. More than others. Menopause was really hard for me too. I use estradiol for painful intercourse. So much better! And I just discovered neem oil. I use it full strength with a few drops of frankensense. My skin feels comfortable and my face skin looks good. But I get tired and depressed too. Especially since my boyfriend wants me to move out so his children will visit. Now I’m scared of the prospect of living alone, trying to find a situation so I don’t have to. It’s stressful but my yoga and controlled breathing help me to sleep.
Hiya, I’ll look those things up, as I haven’t heard of any of them. But I can google!!
You’re right about looking out for ourselves. I find it also makes me feel a bit more in control.
The herbal tincture I take is a mixture of milk thistle, nettle, schisandra, dandelion, lavender for the liver plus shatavari and sage for the sweats fingers crossed they work like they did before 🤞.
Try and get depression under control as it’s bad for the PBC...easier said than done I know, but good luck!!
Depression, sadness. Even though I’m unfocused and can’t find a place I want to live in, I have yoga and teaching routine on my side. There’s a fairly inter active group of health and like minded people at the ymca that fill mornings. I read that Remeral an antidepressant showed significant increase in life expectancy in pbc. I took that over 20 years ago and switched to Zoloft. My enzymes were consistently very close to normal or normal for years. I quit antidepressants when I moved in with my boyfriend 3 years ago.i got chronic Utis and upper respiratory infections. My enzymes went up. Now I have to move out so his daughter can move in, and so his son will agree to see him. It may be time for a round of antidepressants! I’ll run your herbal tincture by my Chinese medicine doctor and google it, my pbc specialist says to stay away from herbal remedies.
Well if you’ve had infections or came off anti depressants, it could be a reason why your enzymes went up.
Thanks. I’m lucky that I’ve not been on antidepressants or had any infection. The only correlation is stopping my herbal tincture...which I’m convinced was helping so I’m back on it. My GP said herbal was ok to take, just didn’t rate it much. Conventional drs will not recommend herbal at all.
In response to your post, I’ve had PBC for about 20yrs, but only officially diagnosed 4yrs ago, it’s just a thought but my blood results have spiked high a few times over the years, then dropped back down again, but it coincided with me having bouts of sinus infection, so I was wondering if maybe you’ve had an infection of some sort ?
Thank you. I don’t think I’ve had an infection. I know you can get fluctuations, I was just taken aback at how it’s taken 2 years of medication and they were coming down steadily then bam in the next year they’re back to what they were and some even higher than where I started from. It’s just so sudden...and that’s what’s eating at me the most.
Can I offer my condolences i am so shocked about Angela - that is devastating news she was only in her 50s a similar age to me and many of us.
I hate to ask what she passed away from as it seems rude but given she had pbc was it related to that? I have recently been scanned for a mass in my liver so feeling very scared atm and the news about Angela is shocking.
Also I can imagine your feelings the drs should have told you your figures, please get to see someone I know it’s hard when you live away from the larger hospitals
Angela may have had other stuff going on that she kept private, but she did have liver failure from the PBC. But she may have decided against a transplant for her own reasons.
The statistics are that most people die with PBC rather than from it.
Firstly can I say how sad I am to read of Angela's passing she was a great help to many of us I am sure she is sadly missed by her family and friends.
Here is a safe place to offload Hils67 and to find others who have experienced what you are going through. For myself I was diagnosed in 2006 and after 4 or 5 years I was dismissed by a young rather rude hepatologist to the care of the surgery. When my mother died in stressful circumstances my PBC itch went out of control so I returned to the GP who I found out was retiring and she said and I quote "people like you should be under the care of the specialist" and she would write straight away for an appointment. People like us should be under the care of a specialist, the surgery does not have the expertise all they are doing is reading numbers off the page. When I did find a hepatologist at the hospital I was given an endoscopy an ultrasound and a dexa scan all of which I doubt I would have been given under GP care. I appreciate our numbers fluctuate especially if we have something else going on in the body anything from a cold to the menopause but I hope you will find a way to settle your numbers back.
I hope your doctor will be able to give you some reassurance.
best wishes
So very shocked to read about Angela, she was one of the first people I replied to when I joined in 2013 ,and we had a few chats, over the years. She was so down to earth and had such a positive outlook on life and was an inspiration to me to get back onto a good diet and cook from scratch again.
I was going to suggest you got your bloods re tested as they can fluctuate up and down, and you’ve been through it a bit of late. If there still the same or rising I’d ask to speak with the gastro it’s your right and we have to be our own advocates. . You take herbal tinctures for the menopausal symptoms is there something in it that can affect liver tests. I only say this as, when I was suffering I asked my gastro if I could take a supplement for hot flushes she said I could try them, but to let her know which one, so she could monitor the bloods more closely for any changes. Take care, and do let us know how you get on.
Very sad to hear Peridot has passed away. We were both in Health Unlocked from the beginning and often commented on the same things. She was a positive person who offered help and advice to anyone who needed it and shared her experiences. I did wonder if something had changed when she left the site but this news was unexpected.
I hope you are feeling better and more in control. Sometimes even "ranting" can help you to feel better so " rant on" we are listening.
You have a right to get a print out of your bloods. I travel to Manchester to see my hepatologist but have bloods done every 3months at my GP who prints out the results for me to Email to Manchester. I know how you feel when levels rise for no apparent reason it is very upsetting but as most of your replies have mentioned it happens but then makes you anxious which makes things worse. Do try to get a referral via your GP to see a hepatologist Birmingham was my second choice if I couldn’t get in to Manchester (only because of the travel distance) It is possible as I changed from Halifax to Manchester with the help of my GP. Good luck and let us know how it goes. Don’t give up it is your right to seek out the best. Like all the other replies I am shocked to here the news about Peridot but many times we are told that you are more likely to die WITH PBC and not from it. RIP Peridot
I used to write to Angela as well but the last time i had a mail from her was in late June and before i could reply my computer crashed and i lost her address and i was waiting for her to email again but she didn't, I was absolutely distraught last night and went to bed in tears and i still cant believe it today. i do know that she left HU for other reasons and not because she was ill, I still cant believe it as last time we spoke she was fine.
She told me she thought it was menopause, I cant remember the exact date but i can probably find out the date my computer crashed, i know and email had just arrived but didnt get the chance to reply, did she actual go back to the hospital consultant, she did say she would, was it Bren who told you whats happened, how is he holding up
Sorry to hear of you problems compounded by the loss of Peridot (Angela). She was such an active and supportive member of this group when I first joined and i am deeply saddened that she has passed. I will always remember her - RIP Angela xx
Omg! I am so sorry to hear about Peridot. I believe she was the first to respond to me when I was first diagnosed and she really was very reassuring that I would not die from this, rather of something else. Please tell me she did not die from this disease! I am so scared now because of how lousy I have been feeling lately.
I think we all get scared, but the statistics are that most people die with PBC rather than from it. I don’t know for sure, but maybe Angela had other things going on which she kept private. I think the worst that happens with PBC aid ending up needing a liver transplant. Which is why I like to know exactly what my bloods are doing so if it does get worse I can be prepared.
Hey Hils67, my numbers have been better and better since they added the Ocaliva 5mg 1 a day. I take 4 300mg Ursodiol and 1 Ocaliva every night at bed time and it's worked great. As far as your hot flashes, go to your health and wellness store and get you Womens Cream and apply as directed, works marvelous. Hope this helps.
I am truly deeply saddened to hear the very sad news about Peridot. I think it has given us all a real shock as her pbc seemed well controlled. She was always so encouraging and generous with help and advice. Bless her and her family.
I haven't been on forum for a few mths but like everyone else i am very sad to hear this news, peridot was the first to offer me advice when I was diagnosed a few years ago. I hope she knew how much help and support she gave to us all and that it was very much appreciated.
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Is it PBC or not?
Feeling a little frustrated
