I was diagnosed with PBC over 10 years ago and have been relatively well. l ast week while on holiday in Australia from NZ I awoke with a slight headache. I got up and went for a long walk and came back and had a coffee . I was talking to a lady from Tasmania and was telling her general stuff but then....I suddenly realised I couldn’t remember My sons ages and other details..I realised I was confused went back to my room and decided to lie down . I got up and decided to have a light lunch . Maybe I needed food. The menu was weird and I realised that my brain was still a bit scrambled so went back to the hotel and lay down again trying to work out what was or had happened. Time passed and mr google and I started to think I’d had a minor stroke so I thought I should go to hospital AE as I was alone and if it was I may find myself unable to help myself to get assistance. So I took a taxi to the emergency department of a local hospital who took my worries very seriously.
They immediately put me on a heart monitor and oxygen and took bloods
In the night I had a chest Xray and a ctc scan on my brain and still In A n E was aware my brain had cleared felt a bit silly. A proffesor of neurology looked at the scan and decided I should have an ecg on my brain ( amazing ) and later in the day a brain mri because there was a shadow?!
suddenly the guy who had seen me in the morning was at my bedside and he said your okay !
Diagnosis and back in NZ ..
My mild migraine could be a factor ( still have it) and they believe it is part of it and some headaches can inexplicably cause temporary confusion Also my B12 level is extremely low and that can also cause confusion and rather than wait for it to be drawn I must get one in nz which I now have had.
They suggest I see a neurologist as the brain scan showed an indicator/mark which could be just aging so inconclusive really.
Here I am!
My question is about brain fog and I’m sure people have mentioned it here but could it be related to B12 deficiency and do we pbc Ers have a propensity for B12 deficiency as part of our auto immune disease?
I’d feel a lot better to know that it could be the cause otherwise I’m in limbo...
Comments would be appreciated
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boneytoys
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In my opinion a PBC could develope from a B12 deficiency and not the other way around. I not a doctor but have been studying the affects of vitamin and mineral deficiencies.
My b12 was low when I was diagnosed recently. I take it as a separate supplement from my daily multivitamin. I take a daily vitamin, double dose of calcium/D3 (was advised to because of prednisone I'm on) & b12 to try to sort the vitamin levels out.
I'm glad that you went and had it checked out. Let us know how it turns out once you return home.
I am "scatterbrained", "ditzy". People have always described me that way. I cannot remember anything. This is how it has always been. My husband says he likes it because I will not remember if I'm mad at him lol. K But seriously, I have actual blank spots in my memory when he says "remember how we talking about...." no recollection of the discussion at all. "Remember when we..." nope.
I have pernicious anaemia and have regular B12 injections. Sometimes I can be sitting talking to someone and wanting to use their name but it will not come. It is embarrassing. It may be a good idea to also check vitamin D levels as quite a few people report vitamin D deficiency is also a problem. I understand that it is the fat soluble vitamins (A D E K) that are a problem for those of us with PBC.
Since the PA diagnosis and the B12 I can say that I am better than I was.
I was diagnosed 11 years ago and have been quite well really but,
I was getting terrible fatigue and in one of my blood tests it showed B12 deficiency so I was recommended B12 injections. I now have B12 injections every three months/12 weeks. It seems that you can go to your GP and request these (as you have PBC) and I now just phone for my appt. with a nurse at the practice - 30 seconds injection - a reminder of when next one is due which I note on my diary and so on...
I do notice that towards the end of the three months I am sitting on the end of the bed again after taking a shower, !!! after the injection my stamina is so much improved.
Now you mention it - my mind is more on the ball too... but that could be because I am not so fatigued. Its a circle. Who knows.
Annac Very interesting this B12. If I may ask do you also have thyroid problems. Mine is Hashimotos Thyroiditis Autoimmune and PBC . My thyroid gives me from time to time abnormal heart rhythm and then I get hospitalised and after a while it settles. Also have this brain fog, but I thought it was due to old age. I am nearly 77.
sorry to hear u have all these probs but can i ask yrs ago after a hysterectomy my body went into over drive anxiety wise drs put down to the fact i was young to have hysterectomy one very faithfull gp 2yrs later discoverd i had a lump on thyrioid which was removed instanly felt better but it was causing thyroid surges and missing the blood test anyway i have another one on other half currently waiting for rpt scans but i also have strange heart rhythmn that they can not find a reason for basically just live with them but im intriguied with your bit about through thyroid as the drs understudy mentioned thyroid but main one squashed his idea i think i will investigate a bit further also i have pbc which is under control and also have fibromyalgia which is not and does as it pleases with me so good luck for future and thank u for the new interest u have given me x
Pattie1955 did you have hyperthyroidism my dr is checking my calcium level for this as I borderline symptoms are almost the same as for PBC which I have had for 8 years. Can't take vitamin B though to help my PBC due to this
Pattie1955. Thanks for your quick response. I had a hysterectomy at the age of 33. I think a lot of things started going wrong from there on but I was healthy and energetic and hardly ever went to drs. Never went for Hormone Replacement Therapy. About 20years ago the thyroid problem start and I was told it is an underactive one. I am thin. Always thought it was other way round. They also discovered 5 notules, but they did not show any signs of malignancy, and I was okay to take Eltroxin and then it was fine. Now lately it is jumping from hyper to underactive, Hashimotos. PBC after 8 years the counts lowest ever. Just the awfull ITCH that I have to cope with
hi your a bit like me i did hrt for 20yrs age 39 hysterectomy 2yr after nodules never felt the same since hyster lol pbc 8yr fibro2yr took half my thyroid with nodulez on benign got 4now on other side having to wait a yr for rpt scan as one i had done was mismeasured so could nt tell if it had grown
Pattie1955. I know, but that also put strain on liver . A friend suggested the other day that I should try Cannibas. She has liver cancer and started using the oil and from
My Antithyroglubulin level sky high and so also Antithyroid Peroxidase. So the report said severe Hashimotos, Graves. Moderate Primary idiopathic hypothyrodism, chronic thyroiditis, Slight Other autoimmune diseases . A lot of Greek. I took it down from Report. TSH was low Free T4 was in range(this time, but it changes all the time)
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mine erre all normal which is why it took them 2yrs to discover and if it had nt been for my gp prob i would still have probit was only coz she sent me for a scan that nodules were seen
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Thanks Pattie & Rockie,
I have nodules too & TSH is normal. I get a thyroid scan annually to monitor & did 2 biopsies on nodules. How often do you get thyroid scans now, if any.
Hi I can relate to the age thing I am 70 and am beginning to excuse lots of things due to being a little older. Generally I am extremely active and fortunately healthy. It's just a number so they say.
I would be very interested in the answer too. I suffer from migraines and brain fog, especially when I am stressed or tired. It gets so bad I cannot remember my name and what simple everyday things are called. How does B12 show up in your blood tests? In the UK how do you ask for injections for deficiency as my consultant has never talked about it. I feel though that injections may help my headaches and fatigue.
i get very bad brain fog and have put it down to my fibromyalgia my friend has fibro as well and has b12 injections on a reg basis think a lot depends on your gp (uk) we both have same one and very through but i can t see why they would refuse b/test to outrule just ask its your life your dealing with the prob on a daily basis do not be afraid to ask good luck x
I'm the same June. I asked my GP about B12 injection last year and she said no, it wouldn't be routinely given. She's now left the practice but I'm having other symptoms which suggest vitamin B12 deficiency so I'm taking it in tablet form but I think I'll go back and get it checked out at the practice.
Just thought I’d let you know what’s in my history. I had very severe migraine headaches. I am talking about daily. I was working and it was dreadful. I spent my breaks lying down with a cold cloth on my head. In 2008, the doctors felt that I was gluten sensitive ( not because of the headaches, but because of abdominal pain and skin issues). I was sent to a dietician to go on a gluten free diet. She told me to be very strict. Watch for cross contamination etc.
Well three weeks later, I realized my headaches were becoming practically non existent. I thought maybe I was finally getting a reprieve. Then I just could not resist a bite a a Tim Hortons donut, and wow I got a headache that was just terrible. The donut was not worth it.
Just thought I’d mention it.
One never knows how our bodies work. As long as I’m very strict with my gluten free diet, I am headache free.
Ye I suffer from cluster migraines. Nothing for a while then bang they hit. Never been investigated for the cause though. Will ask next time I am at the docs.
I suffer from folate deficiency anaemia and take folic acid and ferrous fuerate fir 4 months st a time. I also get brain fog but think it’s a combination of lots of things including menopause! I also have changes in my brain picked up on MRI but neurologist not worried about them. Take Care x
PBC causes most of us to have brain Fog, confusion, B12 might be a red herring.
I had PBC UNdiagnosed for ?? years, I only found out once my liver was at stage 4 soon after I had Hepatic Encephalopathy, so I suffered brain fog, confusion and then total madness all in a 12 month period.
I can confirm the Brain fog was for me very severe indeed. My case was PBC, I did have additional B12.
Hi boneytoys, pernicious anemia is an auto immune disorder-- one has to receive vitamin B12 shots on a regular basis as the intrinsic factor is lacking. There are specific tests for pernicious anemia -- my sister was diagnosed many years ago-- she complained of 'foggy' concentration issues-- a maternal aunt suffered from this as well. Quite serious if untreated. My sister & I have hypothyroidism as well, another sister has Graves ( hyperthyroidism), I am only one with PBC as well. Ask doctors re pernicious anemia, see what they think-- after all , already have PBC which is considered autoimmune by many, not unusual to have more autoimmune issues pop up. Good luck & keep us posted!
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