Should I continue?

[willkar]

Hi, Nice to meet you all. I am a 36 year old, new on this site. I was wondering if anyone would be able to help with some advice. After going to my GP with fatigue, weight loss and the development of a spreading rash (petechiae) on my arms following treatment for severe gastritis with omeprazole for a couple of months I have been diagnosed with a vitamin B12 deficiency level 179, folic acid deficiency level 2.2 and low iron stores level 26. I have had problems with pins and needles in my legs on/off for months and had earlier been treated for a vitamin D deficiency late last year. I have also experienced recent problems with upper back pain. My memory has also not been as good as normal.

My levels had been checked at the end of last year and were all normal. However, I had been taking the occassional multivitamin which may have affected this? I don't think my diet is drastically bad, fish etc included. However, I acknowledge it could be better.

My GP had commenced loading vit b12 injections and folic acid at 5mg a day. I didn't know that i should have had the first injection prior to taking the folic acid for 2 days pending the injections. Which is what I did. I managed 3 of the injections and was continuing the folic acid and iron during this and then got even more confused than what I was before starting. I got lost in a building I had been in before several times and had diarrhoea. Following which I was told not to take anything for a week and then to omit the iron completely just now. The injections were rescheduled and i was told that i should take this high dose folic acid at least 3 times a week. I have had major problems with abdominal cramps, gastritis symptoms, nausea and diarrhoea for several days. I also have no appetite in comparison to reduced appetite before. I have just had the 4th injection and started folic acid again today. It made me feel more ill. I am not sure whether to continue with all this medication. Or stop and take a multivitamin? I have had GI problems before (bleeding in my stool) which has also happened again during all of this (although currently stopped). A previous scope was normal.

Do I continue with this plan? Ask for a referral to GI/ or haematology or stop, give things time to settle. Then get my bloods rechecked and retry? Can I just take a multivitamin (may just be dietary) ? I am also aware that my gran had pernicious anaemia and that I haven't had my intrinsic factor checked, should i push for this. I think I was checked for coeliac disease last year and it was negative. Thanks for your help and advice.

[Gambit62 Administrator]

Intrinsic Factor test is notoriously unreliable - yes you probably should push to have it done but if it comes back negative then that doesn't rule out PA. There are other possibilities that would cause problems absorbing B12 - one of which is low stomach acidity rather than high stomach acidity. However, the symptoms of low stomach acidity are very similar to high stomach acidity so it is frequently misdiagnosed and treated as high stomach acidity which just makes the absorption problem worse. The fact that you have a lot of other deficiencies also points to an absorption problem.

I wouldn't worry about the two days of folic acid before the B12 too much - your body need folate in order to be able to process B12 but there is a lot of confusion around treating both folate and B12 deficiencies when they occur together because of some bad wording in guidelines.

If you have anaemia in the sense that your red blood cells are not properly formed - and sounds from what you describe above as if that was the case then potassium levels can become depleted when you start supplementing B12 and the symptoms you describe do sound slightly similar to potassium deficiency but there might also be a sensitivity to other ingredients in the folic acid and/or some sort of methylation problem going on that means folic acid may not be the form best suited to you.

Referal to a gastro sounds like a good idea as there could well be other things going on.

Unless you can categorically rule out absorption (would say unlikely given all the other deficiencies) then I would caution against stopping and just trying the multivitamin as the doses of B12 in there are going to be relatively small and unlikely to have much impact so you will continue being deficient and that would not be good news long term. However, you do need to track down what exactly is causing your problems - one obvious way is to try starting with one medication and then adding the others into the mix one by one. Think iron is a common one for causing problems.

I am not a medic - just trying to come up with some common sense approaches and a few things that you could look into with your GP.

[willkar in reply to Gambit62]

Thanks for the advice. My haemoglobin was low normal when the deficiencies were picked up. Yeah I will speak to my GP about a GI referral especially now that I have no appetite. Do you think that the dose of folic acid is to high? I wondered whether folic acid toxicity was a potential problem? Thanks Karen

[Gambit62 Administrator in reply to willkar]

I can't really comment on the folic acid as it is a standard dose being used to treat a deficiency. In itself folic acid isn't toxic but you might find the section on folic acid/folate in this document useful.

efsa.europa.eu/sites/defaul...

[Gambit62 Administrator in reply to Gambit62]

note that Polaris has posted some information on folic acid and B12. there is a lot of concern - particularly in the US - about fortification of foods with folic acid and the risk that having high folic acid levels will mask one of the (possible) symptoms of B12 deficiency - macrocytic anaemia, delaying diagnosis. However, macrocytic anaemia isn't a defining characteristic of B12 deficiency and if you already know there is a B12 deficiency it becomes a bit irrelevant.

The section on folate in the EFSA (European Food Standards Agencyt) document goes into quite a lot of detail about the interaction of B12 and folate and concerns about toxicity.

The main concerns in relation to toxicity seem to apply to folic acid - the form of supplementation you are receiving so something else to talk to the GP about - again - may not be the right form for you.

[Polaris]

I am not a medic but my understanding is that folic acid should not be taken while B12 is very low as it gets 'trapped', cannot be used, and could make neurological symptoms worse :

"High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

gbhealthwatch.com/Nutri...

..................

These links may also help you decide whether to continue supplementing while B12 is low.

ncbi.nlm.nih.gov/m/pubmed/2... :

"These and other data strongly imply that excessive intake of folic acid is not always safe in certain populations of different age and ethnical/genetic background."

....................

Latest BMJ research document:

cmim.org/pdf2014/funcion.ph...

"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.

In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid is recommended until vitamin B12 is replete to prevent subsequent folate deficiency after replenishment of B12 stores."

[willkar in reply to Polaris]

Thanks this makes sense. My problem is that i don't know if my folate deficiency has caused my vitamin B12 to be low. I know that vitamin B12 is water soluble and is less likely to cause problems if levels get high and for that reason I could go with the vitamin B12 without folate. However, if my vitamin B12 levels generally need boosting should I not take some folic acid to ensure its absorbed and to help if levels can drop more after boosting vitamin B12 levels? Ultimately I may need to get my iron stores up more to help with them both.

Thanks

Karen

[Polaris in reply to willkar]

I'm sorry there seems to be a lot of confusion around this and maybe more research needed.....

More extracts below. Could the key words from this be ' ' 'ample B12', so that when your B12 levels are raised, you could perhaps try adding folic acid again and see if you get the same reaction?

"The body needs ample B12 in order for folate to work and one of folate's crucial jobs is to synthesise the nucleotide 'building blocks' of DNA. When folate is trapped in an unusable form due to lack of B12, it can't do this job correctly".

"Folate is required for the synthesis of red blood cells, those tiny disc shaped cells that carry oxygen in your blood to deliver it to each and every corner of your body. However, B12 is required in a reaction that converts folate into a form usable by the body to make red blood cells. Without that, folate cannot participate in the synthesis of red blood cells. So without B12, folate is literally of no use! ". - 'The B12 Deficiency Survival Handbook', by Dr Aqsa Ghazanfar

[Polaris in reply to Polaris]

I agree that, with PA in the family, it would be a good idea to ask for a referral to a gastrologist for IF test, etc. although this is not always reliable (see summary of the BMJ research document above).

[Gambit62 Administrator in reply to Polaris]

Polaris - I could only get the middle link to work - first came up with error 404 and the last with an error message - in spanish(?) about the extension type. I'm using Chrome so that might be a browser issue.

[Polaris in reply to Gambit62]

Sorry Gambit - have just edited the BMJ document as this came up in Spanish too ?!

Hope this works 🙂

ncbi.nlm.nih.gov/m/pubmed/2...

[willkar in reply to Polaris]

Thanks for your help and advice.

Karen

[wedgewood]

Glad to see that you have had so much advice . I picked up on he fact that you have been taking Omeprazole which will deplete you of vitamin B12.It cancels out all the stomach acid which you need along with Intrinsic factor to help break down and absorb B12 . If you do have PA you will have low or no stomach acid , my gastroenterologist told me . So the last thing you need is a PPI like Omeprazole . For your tummy problems a good probiotic is needed . Like e.g. Symprove or, better and cheaper ,organic raw sauerkraut . . This will improve your stomach flora .