Extreme fatigue

[Aaadm]

I’ve been on folic acid and b12 for 3 months because of low levels and extreme tiredness....nothing has changed and now the doctor says to stop taking the folic acid and go back in 3 months...with no explanation of the fatigue? I have had stomach issues for a few years and recently diagnosed with inflammation of the duadenum with mild erythema....I’ve been drinking gaviscon daily for at least a year as well as taking a ppi this was changed a couple of months ago to a stronger one but it hasn’t helped. What else can I do?

[pvanderaa]

Have you gone gluten and dairy free?

[Aaadm in reply to pvanderaa]

Had celiac test..... proved negative and had camera down. Don’t really have dairy much and don’t have any side affects from having lots of dairy or lots of gluten? Thanks for asking ..... I’m so tired I sleep all weekend and have gone part time at work.... my legs ache, I have dark circles around my eyes....

[pvanderaa in reply to Aaadm]

I developed both of these after starting B12 injections. Try giving them up for two weeks. It takes this long to clean out from the liver, gut and bile.

I also went soya free.

Are you keeping a logbook? Symptoms can have a 3 to 48 hour delay from their cause. Log onset and severity of all symptoms as well as time of food, drink, meds.

[wedgewood]

You say that you are “on” B12 . Do you mean oral or injections ? Have you been tested for PA? This is the Intrinsic Factor Antibody Test (IFAB)This is an unreliable Test if it comes up negative but if positive means you have Pernicious Anaemia .

If you have PA , this will mean that you have low or no stomach acid (-Hypochlorhydria or Achlorhydria ) You are taking acid repressing medications . Lack of stomach acid upsets the balance of your stomach flora , allowing bad bacteria to flourish .Also makes it difficult for your body to break down and absorb the nutrients in your food .

Before I was diagnosed with PA , I had the usual symptoms plus the awful gut problems . The gut problems were solved when I treated myself with a very good probiotic called Symprove . My PA is treated with B12 injections , and I take a folic acid tablet daily . —- life has returned to normal . I’m afraid the medical profession has a poor understanding of PA . I had to go privately to a GP in a Nuffield hospital to get my diagnosis . I also self-inject B12 , as I could only get 1 injection every 3 months , which was insufficient , I’m telling you this , because it might help you . I don’t know if you have PA . I only know it is difficult to get a diagnosis . I’m also sure that PPIs and other stomach acid suppressants do a lot of harm .Also a s we get older , we get less stomach acid . This can cause the oesophageal sphincter not to close 100 % so acid reflux occurs , causing “heart burn” We need our stomach acid . It’s there for a purpose . At first I treated my lack of acid with Betaine hydrochloric acid with pepsin capsules ( Amazon) But now I take an acidic drink with meals , especially with a meat meal . My health has improved no end . But we are all different .

I hope that Ive helped you a bit . Best wishes .

[Aaadm in reply to wedgewood]

Thankyou....I’m so confused I’m 24 and life’s a mess, I’m exhausted all the time. I have been to the GP and had so many blood tests....and seen a gastroenterologist. Who would I see privately to get a diagnosis?

[fbirder in reply to Aaadm]

You need to see your doctor.

You explain that you want to be treated for your B12 defieicny in accordance with the guidelines as set out in the British Namtional Formulary (BNF). Your doc will have an online copy, but it may be worth printing out the relevant bit from here - bnf.nice.org.uk/drug/hydrox...

The key part is the first entry

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

So you should be getting treated with injections to prevent you from getting macrocytic anaemia.

[wedgewood in reply to Aaadm]

You should be able to get a diagnosis from a GP . I would not see a private doctor straightaway . There are no specialists for Pernicious Anaemia / B12 deficiency. You need to have the IFAB test which is unfortunately unreliable if it comes up negative ( about 50% wrong) But you should be treated according to your symptoms anyway . . If you do have P.A. and you are taking B12 tablets , they will not benefit you . You will need B12 injections for life . PA cannot be cured . But with sufficient treatment , you can live an active normal life.

Your gut has been very upset by you taking daily Gaviscon and PPIs .

fbirder has given you some good advice . Arm yourself with that reference when you see your GP . I know how difficult it is to deal with GPs when you feel so unwell . So let us know how you get on . Feel confident in the knowledge that there are some really good people on this forum ( sorry, I’m not one of them) Best wishes .

[EiCa]

Have you considered stopping the PPI’s for a bit? Years ago I took them and they weren’t helping. I tried several different ones. Finally I discontinued taking them all together and my stamach pain went away. Sometimes the problem is not enough stomach acid. If so the PPI’s make it worse. There are now many warnings about long-term use of PPI’s. Even gastroenterologist aren’t prescribing them as much they used to...