Pernicious Anaemia Society
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Finally feel human!

If I hadn't of been struck down quickly with mono (but didn't actually know it until the end of the discovery process of what was going on with me) I am positive the diagnosis of everything else would have been delayed and I would have remained ill feeling. It was the lack of my GP's attention to my failing health after the mono and her total neglect at even properly reading my blood results that lead me to seek another medical professional. He immediately looked at all my test results dating back 2 years, did more blood work and diagnosed my PA and other very severe vitamin and mineral deficiencies. How can my former GP think my folate level at one time being a .2 and my D being 14 and b12 122 is normal but tell me it's normal? That test was from March 2014 and was abnormal ever since with Mch and mcv being so out of wack. I can't remember what it was when my GP did my tests but I think i posted it here somewhere but it was still abnormal.

So my new GP went to work. At one point I didn't think I was going to make it. I was so exhausted all the time but also didn't know I had mono as well. My bones hurt, muscles hurt, everything hurt. My mind was very foggy and I struggled to find words. My legs were still numb, parts of my arms and face were too. I thought I would have to live like that the rest of my life. As I type I still struggle to find words. My homocysteine was so high he kept doing blood work and ending up doing the test for MTHFR which was positive for two copies of C677T . Oh goodness what else was he going to find?

He gave me samples of Deplin and 2 days after taking it I started feeling human again. Was it just the methylfolate or everything finally starting to come together?

It has been 3 weeks on the Deplin and I can't believe how human I feel. My mind is still a little foggy. I do not know how I worked everyday during those months I was so ill. I look back on my posts and the dates I reference to are wrong. I am not sure unless I do the research just how long this has been going on but i think it happened in July. My b12 is 677 and still getting injections. Folate is >7 and all vitamins are within normal range.

EXCEPT recent blood work said I am anemic! Just regular low iron anemic. May be due to my intestinal issues and pain.

But in the meantime I finally feel human again!

4 Replies

I, too, am homozygous (two copies) for C677>T. I, too, felt better taking methylfolate. So it's quite likely that it was that which was the last link in the chain that needed fixing.

If you have PA (have you had an anti-IF antibody test) then you also have Autoimmune Metaplastic Gastric Atrophy (AMGA). As well as stopping production of IF (which causes the B12 deficiency) AMGA will reduce the production of gastric acid. And that is needed for the proper absorption of iron. It can also produce IBS-like symptoms.

I take Solgar Gentle Iron (one a day) to stop the iron deficiency and I drink around 30 ml of lime juice with each meal.


The one thing I am still having problems with is sometimes processing information that I've read. It really bothers me! So let's see.

I actually tested negative for IF but was told 50% of people do.

I once had H.Pylori and was treated for it and 11 months ago was negative for it. I was positive for moderate gastritis and moderate to severe inflammatory bowel disease but NO current lymphocyctic flare up could be found. It was only past month or so my upper abdomen became so painful.

I do have an endoscopy scheduled for next week.

Thank you so much for your response!

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I do have an endoscopy scheduled for next week.

That's good. The gastroscopy will show if you have gastric atrophy and biopsy samples will show if metaplasia is present (where Gastric Parietal Cells have been replaced by other types of cells). If those two boxes are ticked then, in the absence of any other cause being determined, AMGA is the default option.

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Delighted you met a GP behaving responsibly. You are lucky.


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