Thanks for all the helpful advice on my previous post... My symptoms feel like they are getting worse - the metallic taste in my mouth is worse then ever and more frequent and my whole face tingles when Iit happens - I have muscle aching in my right arm and leg but I do have disc damage but feel like this is getting worse - honestly I feel like I'm dying of some horrible neurological disease
I ended up in A&E last week with a suspected mini stroke as this mouth /face tingling happened and my left side also went all tingly - thank goodness it wasn't.. and the Dr thinks it is to do with the low folic acid and taking PPI's which is suppressing my stomach acid - but he told me to change the PPI to Lansoprazole
I checked my folate levels from a blood test last year ( May 22) and they were above 8 ( 8.9 ug/L) so I'm convinced its to do with the PPI I've been on since January - my B12 last May was 329 pmo/L - not sure what that means - but both my GP and the A&E dr from last week said my B12 is absolutely fine ...
I rang my GP yesterday and she has told me to stop the Esomeprazole, take the folic acid for a further week then stop for a week and get bloods taken again ... I also have to give a stool sample as diarrhoea since taking the Folic Acid
I had a 2nd endoscopy in July and waiting results from Biopsy - I'm sure nothing sinister as I would have heard by now but have my consultation to review 12th Sept .... honestly my anxiety is through the roof - is there any end to this?
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Missprettyshoes
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Summary of BSH Cobalamin and Folate Guidelines ( a UK health document) says
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Furthermore, treating low folate without treating low B12 can accelerate nerve damage and result in subacute combined degeration of the spinal cord (SACD). pernicious-anaemia-society....
PPIs can also block absorption of B12 and they are not meant to be used long term. Many of us with PA / B12 deficiency and autoimmune gastritis have low stomach acid, not high, but symptoms are the same e.g. reflux and indigestion. Many GI doctors ignore this fact because they are not familiar with PA/autoimmune gastritis.
Hi Jade - thx for replying - when I went back to the GP he told me my B12 was "bang in the middle" of where it needed it to be and so did the A&E Dr ... although the A&E Dr did say that I am presenting with symtoms to that of low B12 even though it was within range ( if that makes sense) ....
See the letter writing template page b12deficiency.info/writing-... see point 5 . It includes a long discussion on functional B12 deficiency and various links to papers as well as the NHS. It is possible to be functionally deficient even with normal levels.
I strongly encourage you to get copies of your results for yourself. I have too many horror stories just even within my own family so I don't trust any verbal feedback. Like the family GP that insisted PSA was measure every year and that it was normal. After my relative was eventually diagnosed with late stage prostate cancer, turns out the GP hadn't measured PSA even once.
"the A&E Dr did say that I am presenting with symtoms to that of low B12 even though it was within range"
Might be worth getting access to medical records from hospital. Hopefully A and E doctor has recorded his observation that you were presenting with symptoms of low B12 deficiency. You could then show this to your GP.
I can't remember if you have found the local B12 deficiency guidelines for your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland but think it would be helpful to do this.
If you can't find them by searching online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a copy of or link to them.
It's possible that the local guidelines may say something about people who are symptomatic for B12 deficiency with normal range serum B12.
I believe that anyone with B12D/PA should not take any PPI. There is an effective alternative - H2 Blockers - which do not appear to damage the stomach and in my experience are more effective. It seems that PPIs are in vogue with medics and H2 Blockers have fallen out of favour.
I think B12 helps even when the neurological problems are because of primarily some other cause such as diabetes. It is worth trying one or two shots to see if you feel better, and if you do, to do a full course. If you don't know how to self-inject or GP won't give you a shot, try at least orals for some time to see if you feel somewhat better(It can take much more time with orals to see any benefit - at least one or two weeks and perhaps a month). Since the tingling etc. is happening all over the body, I doubt it is due to disc problems. It is definitely something to do with some kind of deficiency, most probably B12, perhaps exacerbated by the PPI you are taking. Good luck.
Really sorry that you are having such a hard time of it.
There has never been a better example of where a strong suspicion of B12 symptoms with a "normal" serum B12 needs a secondary elimination test.
Methylmalonic acid (MMA) test is probably the one that would give you the best indication. Your MMA makes links with the B12 in your bloodstream in order to get it to tissue/cell level. If there is insufficient B12 present, MMA will continue to build up within your bloodstream, sometimes undetected until very high levels are present. If your B12 problem is clear (ie at a below-range level), you would normally be given a series of 6 injections within a short timeframe in the UK - should be over 2 weeks, but often as much as a month. This should mean that your B12 is then replete and your MMA level in bloodstream will rapidly have returned to normal.
But for some, the link between MMA and B12 is not properly made and never makes it to cell/tissue level, causing indications of deficiency/insufficiency: symptoms continue to worsen, as both B12 and MMA build up in blood. A stagnation situation ! Functional B12 deficiency - a malfunction in the transporting process.
But this is fairly easy to detect with an MMA test IF your GP/consultant has a strong suspicion that your symptoms are those of B12 deficiency, despite what blood tests are saying. From primary care, the GP may have to look for sending the request to a main hospital lab, as some of the smaller local hospitals are unable to test for MMA.
MMA being raised or high prior to any B12 injections would give you a decision about B12 deficiency, but not a cause or a diagnosis of PA. There are two conditions to be ruled out if MMA is raised /high: any renal problems (a simple blood test) or small intestine bacterial overgrowth (SIBO) - which would need to be ruled in/out by a fasting breath test over 3 or 4 hours.
All of these tests are available through the NHS - but you need to get your GP to accept that these are the next step for you first. The new draft guidelines published by NICE would, I believe, suggest an MMA test next in your case.
Others have made appropriate comments on your B12 So I'll keep to one thing your doctor said....."STOP THE ESOMEPRAZOLE"
Did she tell you how to do it? You can't just stop PPIs. you have to wean yourself off of them oh so slowly. I'm still trying to do it but reflux returns. Now I'm cutting open those tiny sealed capsules, trying to measure out three-quarters, later half, of the contents and putting it into an empty capsule to swallow. If I just swallow the contents without doing that the tiny granules not only are difficult to swallow but have the most awful taste.
Yes, you're getting acid rebound. Please try going it gradually. Some people do it by taking one every second day for a week or so, then gradually spreading it out that way. It did't work for me so I tried the way I stopped smoking. Nicotine gum, one piece, then half, then quarter, until I could do without altogether. I know my way is fiddly but it seemed the best way and I'm down to about a quarter of a capsule a day now. Soon I'll be done, maybe the occasional Rennie at night.
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