Still fighting for a diagnosis B12, PA

[Allywales8663]

Due to my ongoing failing health I've had to do my own research as to the pathway of blood test results, symptoms and the progression/knock on effects of having doctors who refuse to help. I have had to be extremely proactive in my own diagnosis, following the path of autoimmune conditions (co-morbid) from:Celiac Disease

Gastritis

Acid reflux

Neurological symptoms

Muscle pain

Joint pain

Oesteoarthritis

Dye eyes

Parotid gland CA

Difficultly swallowing

Rashes

Photosensitivity (UV)

Family history PA

Foot pain

Crawling sensation lower limbs.

Vitiligo

Fatigue (extreme)

Poor sleep

Excessive sweating (face)

Anxiety

I have now had a diagnosis of PBC. This was totally out of her blue as I am a none drinker so never had concerns about my liver, this came to light after I pushed for numerous tests. The ANA test result picked up speckling on my Hep-2. I was not given this test result for over 10 months. It was found by myself whilst going through a pile of results printed out for me by accident by the deputy manager of my primary care centre.

The report stated that the laboratory had no explanation for the speckling result, the term used was the clinical significance is unsure?

It took me about 20 minutes of research to narrow this result down to " this is an autoimmune response" ... And points to one of 4 possible diseases. I fought and fought... I argued and sent evidence, I requested the next step of blood tests, then the next, and then more.... To the point the doctor's were clearly fed up with me contacting them.

Whilst trying to diagnose which autoimmune disorders I have, I am still adamant that I have PA. I ask again for the B12 blood test using the name Holo-TC as I need the active B12 not the overall test which is extremely unreliable. I also asked for Homocysteine and MMA and iron panel. Iron and Homocysteine came back normal but the laboratory did not test my MMA. They put a note on my printout asking why this was requested?

I was so annoyed at this as it's stalling a very important process of elimination by myself, who is trying to show a pathway between my symptoms, family history and blood markers.

I am still working full time and I am finding everyday truly exhausting. My pain level is nearly unbearable. I have cut myself off from family and friends as my health is so debilitating I am horrible to be around. All I do is research my symptoms and present these findings to my GP.

To top it all, the diagnosis of PBC was sent to me via Ask My GP which is basically a messaging service. Good job I'm not easily upset or unhinged getting information of that magnitude in that format. PBC is not something you recover from. It's progressive and will eventually lead to liver failure.

In my quest to unravel my symptoms I discovered that the high dose of Omeprazole they told me to take (14 months 40mg twice daily) could have caused PBC. Along with celiac disease ( wheat intolerance) and B12 (PA), also positive IFAB (1.63AU) and other types of allergies towards foods and environmental factors ect you would think someone would have an epiphany and think "wow" she's not depressed after all.... She really is ill....

[Allywales8663]

This "mimicry" explanation could also be a factor in the diagnosis of PBC as there is no other reason.

Good image

[wedgewood]

As you have tested positive for the intrinsic factor antibody test, you should be on lifelong B12 injections, You must get these injections ASAP. Then after loading doses , as often as required to keep B12 deficiency symptoms at bay. . You must insist on this.. …. If it doesn’t happen , get in touch with the PAS, who will support and help you.

To prescribe you Omeprazole for 14 months, shows dreadful ignorance. . your stomach acid is already horribly depleted through the destruction of your parietal cells, by the I.F. antibodies .

So getting your B12 injections will be the start of your journey back to good health. . Then you can start tackling Other issues.

very best wishes.

[Allywales8663 in reply to wedgewood]

Oh Wedgewood, If only it was that easy. I have fought and failed to get this treated. I have not given up but my health is at its lowest point ever. I've recently been requesting tests (Homocysteine, MMA) which I was hoping would be elevated in one, the other or both test results. They only tested my Homocysteine. The laboratory put a written paragraph on my test results asking for the significance for raising these tests. And obviously this was not for my eyes to see but I request copies of all test results. They informed my GP that they will hold the specimen for 14 days, then it will be destroyed. As you are aware, the slowness these GPs work at is across the board so I will probably have to repeat that blood test (MMA) which is once again slowing down the diagnostic process.

I don't even know what stage I am at with PBC. As I stated above I had a message then radio silence. I have a sneaky suspicion that they hope I will die quietly so that they no longer have to deal with me. All this suffering for the sake of B12 injections that cost pennies. Thank you so very much for your reply, it's supporting to hear from other people with knowledge.

[wedgewood]

As you have a positive test for Intrinsic Factor antibodies , your surgery is absolutely obliged to treat you with B12 injections . Contact PAS - you are a member ,and they will intervene on your behalf .

I would change my doctor or surgery ,as they are so appalling. As I’m sure you know, pretty well all of us on this forum have to self inject B12 , as doctors will not give us sufficient injections to keep symptoms at bay . You may eventually resort to self injection also . You can get information about it here , should you ever need it . We can get b12 ampoules from German online pharmacies . Not expensive. In Germany no prescription is required for B12 ampoules .