GP update

[Misssjb]

Well, yesterday’s visit didn’t go as expected. My GP seems to think my positive ANA & positive AMA relate to 2 separate issues. So I’ve been referred to rheumatology for my ANA, (lupus) now also gastroenterologist for my AMA (liver). On top of that I now wear a 24 hr BP monitor as my blood pressure was high again. Once before the Christmas holidays, & again yesterday evening. Truth is I believe that to just being a little anxietywith all that’s going on (hopefully).

[gwillistexas]

I was told from the beginning I would have to see a rheumatologist for the ANA. They test for all the other autoimmune diseases that are not connected to PBC.

[DonnaBoll Administrator in reply to gwillistexas]

good plan...

[DonnaBoll Administrator]

This sounds like the right thing to do.. ANA does usually mean another autoimmune disease. Whereas AMA means PBC in most cases. Let us know how the subsequent visits go for you.

[OrangeTulip]

Goodluck. I was also assigned a rheumatologist, now I realize it’s part of the health process.

[Misssjb]

okay so now I’m confused 🫤

Because my BP was high & had to wear a 24 hr monitor, I thought when I had it removed last night, & the print out suggests I was now in normal range (138/81) I was fine, but I not long ago recieved an NHS (uk) notification which was because the pharmacy that did my blood test has sent a letter to my GP suggesting they contact me within 3 weeks because results show stage 1 hypertension. Given that my high reading was 150/92, I would say I’m now in the safe zone?

[Wocket in reply to Misssjb]

I had high blood pressure and the pharmacy wanted me to see the doctor first thing Monday morning. I didn’t want to take any more drugs so I tried something else. I started exercising and it really worked. I am now in the normal range. Hope this information helps

[Misssjb in reply to Wocket]

At the moment i have to take sertraline & amytriptoline for the nerves in my leg (& my depression 🫤), plus Atorvastatin for cholesterol.. I take ibuprofen & prescribed cocodomol high strength because of osteoarthritis… I don’t think my body has any room for anything else lol

Reading on here & on the web, both liver & lupus illnesses result in taking meds for life so that’s not really something to look forward to 🫣

Regarding exercise: I will be totally honest, my weight has ballooned in the past 18 months since my symptoms became more prominent, & for all o tense & purpose of buying a static bike, a walking pad, & a row & ride machine a year ago, I really haven’t been motivated to use them because of the constant exhaustion.

I’m not helping myself I know this!

I have also just realised that I tend to waffle on a bit on my posts, so my apologies everyone 🫣

[Wocket in reply to Misssjb]

I feel your pain because I too have put on weight and my gastroenterologist told me to lose 10% of my weight. I did this by drastically cutting down on what I ate (not easy I know) and by exercising but not conventional stuff. I got myself a quest Virtual reality headset and did games and fitness apps on there (beatsaber being my favourite) I also now walk to the shops to get my daily bits and pieces. I get that if you don’t live in walking distance it’s hard. Perhaps park your car half a mile away. I live in Edinburgh so I get a free bus pass so I sometimes walk as far as it’s comfortable and then jump on a bus home. Hope this gives you some ideas but don’t give up trying. X

[Misssjb]

I’m hoping that relates to whatever is going on at the moment & not a third issue I have to keep track of 🫣

[Juhainar]

I had them both positive too but all my tests came negative and it is only pbc for now.

[Misssjb in reply to Juhainar]

I’m conflicted because a qualified nurse suggested both positive cytoplasmic ANA, plus AMA TITRE 1:40 could mean absolutely nothing at all, but a lack of protein in diet. Am I worrying myself over nothing?

I don’t have any other abnormal liver results (SMA & ALKM were negative); however, the only other abnormal result was Serum creatinine level 59 umol (GFR 90> so within limit)

Am I over worrying?

[Juhainar in reply to Misssjb]

Five years ago, a hepatologist told me that since my AMA was already positive, I should monitor for ANA positivity and elevated liver enzymes as potential indicators of progression. Fast forward to today, and I now have all these markers confirmed: AMA positive, ANA positive, and elevated liver enzymes. My SMA remains negative, which my hepatologist confirmed rules out certain other conditions.

After a liver biopsy and a recent consultation, my doctor confirmed that all indications strongly point to Primary Biliary Cholangitis (PBC) and started me on medication. However, I had to stop the medication due to unusual complications following the biopsy over the past six weeks.

I hope that, in time, you all find clarity and the right care for your health challenges. I feel fortunate that my GI referred me to a hepatologist—her clear diagnosis significantly reduced the stress caused by uncertainty.

[Misssjb]

Thank you for that... It helps to have some other personal perspective, & I’m sorry you experienced complications following your biopsy… I do hope you are recovering now.

I did ask my GP on the second visit whether both results indicate one outcome & she suggested not necassarily, but I believe this is due to already being referred to rheumatology, for ANA, before my AMA results were on the system. Hence the further referral to gastroenterology . My only hope the 2 specialists speak to each other.

Take care & rest well!