For the six or so years, I've been battling stomach problems that have gotten increasingly worse (constant diarrhoea resulting in weight loss of 15kg - i'm now underweight) and increasing tiredness. Due to deficiencies I've had 2 iron infusions and 2 rounds of b12 shots in this time period, despite having a good diet with meat and dairy.
Finally, my GP referred me to a gastro specialist for both an endoscope and colonoscopy in December last year. The only thing they found was chronic gastritis (although I'm told they find this in everyone) and the specialist and nurses accusing me of lying and just not eating (I'm a female in my mid-twenties).
With nothing seemingly wrong, nothing was done. (I have already been tested for coeliac which was negative) When I continued to struggle with my energy levels again in July this year, I made another appointment with my gp to get my bloods done. While my iron levels were fine (I had my second infusion in February last year - the same time I had my first round of b12 shots) my b12 levels were down to 27.
He also revealed that they were 24 last year in November (just months after receiving three shots over the three months) - but he missed it and never contacted me about it.
This time he seemed to take it more seriously, and I received three shots over three weeks, and a test for pernicious anaemia antibody.
While I waited for the results of the test (he went away for a couple of weeks) I found the society online. It was a great help to read all the resources and finally I felt like I had a diagnosis that fit - the stomach issues, tiredness, constant pins and needles and concentration and memory issues. I was excited to finally have a diagnosis and something that could be treated.
Unfortunately, (or fortunately I guess depending on how you look at it) the test came back negative. My doctor then ordered a b12 level test to see how the injections had worked - my levels are up to 600, which is great, yet I have to be honest and that I feel exhausted still, with barely a noticeable difference.
It's also depressing that my GP thinks this is case closed now that it's up to a good level. I'm sure it was up to a good level a year ago after those injections - but why did it drop down to 24 within a couple of months? He just doesn't seem interested.
I have another appointment with a different gastro specialist in 2 months, who will hopefully not just say I'm lying about eating.
I'm feeling pretty depressed at the situation, as I'm sure everyone here understands, I'm just so tired all the time and exhausted at being the only one who seems to take my health seriously.
I was hoping to get some advice - if someone with PA was also incorrectly diagnosed - or misdiagnosed with the antibody test.
And how to bring this up to a specialist without seeming like a crazy dr google person?
Thanks for reading if you made it the whole way through.