Confused person!

[sea55red]

Due to terrible brain fog, confusion and memory problems - I am trying to take stock of where I am. If this is repetitive, I am sorry.

Brief history: ME/CFS diagnosed 15 years ago (although having obtained my blood test results recently my B12 was 165 ng/L in 2005), 2 years ago diagnosis of colorectal cancer, operation to remove tumour and part of colon and creation of temporary stoma, chemo and radiotherapy, stoma reversal operation - then about 6 months ago I developed a lot of new symptoms - anxiety, weakness, pins and needles and foot cramps, pins and needles and numbness in one arm, memory loss, hair loss (I still have plenty but leave hair everywhere - clothes, car, bed, sofa), confusion, falling asleep all the time, inability to concentrate - these all got worse until I could barely walk, unsteady on my feet, terrible weakness. I had to stop working and then went to GP. I was diagnosed with anxiety and depression and prescribed counselling and anti-anxiety meds. After several visits she ran blood tests and my folate was low 1.7 ug/L and B12 was low 177 ng/L. I was prescribed folic acid tablets and B12 injects - 6 over 2 weeks. I had the last injection 18th December. I believe I have neurological symptoms/damage. I talked to the GP on the phone and pressed for more injections. Not very successful but she said I could have B12 tablets, 50mcg a day and also said I could have the intrinsic factor test. This came back today negative. However, reading stuff on here I had the blood taken one day after my last B12 injection, so not sure if there was any point. She also said that my results were not standard, or something like that, and that she would talk to a hematologist.

At the moment I find a lot of the symptoms have diminished. The anxiety has mostly gone (up until 6 months ago I had never experienced this), my burning legs are a lot better but still ache occasionally; pins and needles in my left arm and numbness in hand especially little finger is just the same. I am more alert, less sleepy but still have memory lapses and lack of concentration.

I don't know what happens next or what I should be expecting. I found a test for neurological problems called the Romberg test. physio-pedia.com/Romberg_Test. I tried these and I just fall over.

Anybody able to untangle all of this? Have my B12 levels diminished as a result of the treatment I have had over the last 2 years? (Colorectal team believe it may be.)

Is this permanent? Should I push for more injections or wait and see what happens? I don't want to be as ill as I have been over the last 6 months - far worse than chemo.

[Nackapan]

Push for injection s to continue every other day until no further improvement

I had to do this . The gps need ti read the bnf guidelines which are online

Mine did this in consult . You need a referral to a neurologist. They may order more tests.

Yoh will get improvements if yoh keep going with treatment

Blood tests for b12 not necessary once inje tio s start.

The intruscic factor blood tests give ot of false negatives. Gi by symptoms. Also get big d iron and other bloodz done.

Take care

[sea55red in reply to Nackapan]

I have tried. Referred to PA Society Guidelines and BNF. Will keep trying.

[Nackapan in reply to sea55red]

Yes insist

[fbirder]

You neurological symptoms. The British National Formulary says you need injections every other day until there is no further improvement in symptoms. As your doc to check the entry in the BNF for hydroxocobalamin.

Also ask for a referral to a neurologist.

Print this out and give it to your GP - onlinelibrary.wiley.com/doi... Highlight the recommendations at the bottom of page 501 that says...

“Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti‐IFAB‐negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response”

[sea55red in reply to fbirder]

I;ll try printing some stuff and giving it to her. She had the blood tests done as a 'Neuropathy Screen' so makes no sense that she wont follow the protocols.

[LuluCops]

Also ask to be tested for Vit D, folate and ferritin, do not take any iron or folate supplements until full testing and supplements have been started for B12 as they can and will mask symptoms and results for folate and B12 deficiency.

Also ask for a full thyroid panel testing to be carried out too as the symptoms often overlap. Good luck x

[sea55red in reply to LuluCops]

Folate was done same day as B12 - it was below range 1.7 ug/L. Red blood cell distribution width 16% (above range). I don't think I have been tested for Vit D or Ferritin. Can't find anything about thyroid but I think it was OK.

[LuluCops]

Ok could mean anything, you need actual numbers and ref ranges. It’s a wide gap in those ranges as you’ve probably noticed from other tests that you’ve had! Did they start you on supplements for folate? (often given as folic acid?)

[sea55red in reply to LuluCops]

Been taking folic acid for about 3 weeks

[LuluCops]

It’s best to take methylfolate supplements rather than folic acid, there is a link as to why, I will try and find it for you.

Like I said though, taking these supplements before your B12 deficiency has been properly diagnosed, including the cause and correct treatment started x

[Foggyme Administrator in reply to LuluCops]

LuluCops. Briefly, for clarification...

There is no reason why it's 'best' to take methylfolate instead of folic acid. Some people react badly to methylfolate (agitation, anxiety and insominia et al) and most do perfectly well taking folic acid.

In rare cases, methylfolate may suit some people better...but it's an individual 'thing' rather than a 'methyl is best' scenario (sorry, but no time for a fuller explanation right now).

Unfortunately there's 's a lot of nonsense written about methylfolate on the Internet...usually out there by companies or people trying to sell methylfolate supplements!

sea55red ... suggest you stick with the folic acid but consider trying methylfolate if you suspect continued symptoms of folate deficiency. If you do try the methylfolate it's a good idea to monitor your symptoms to see if anything gets worse - methylfolate can make some people feel very ill (I tried it and it made me feel very ill indeed).

Sounds to me as if your GP doesn't really know much about B12 deficiency, including...

1) You can test negative for IF and still have PA (40%-60% of people with PA test negative)

2) there are other causes of B12 deficiency (GI surgery is one prime example that's relevant to you - Uptake of B12 takes place in the terminal ileum and if this has been resected, then the body cannot absorb vitamin B12 - treatment with Injections is needed for life

3) there are many other causes of B12 deficiency - including medications that impede the absorption of B12 (agree with your colorectal team on this - but surprised if the haven't flagged B12 issues following bowel resection?).

4) like you, no idea why your GP is not following the intensive regime of B12 treatment for those with neurotically symptoms. 50mcg B12 tablets are no use whatsoever (only for dietary deficiency). Here's a link to information about that...

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

And here's a link to the BNF that details treatment for those neurotically symptoms (about the third or fourth paragraph down). I suspect your GP thinks this is only for those with PA (which you may or may not have)...BUT...the treatment for PA is treatment for the B12 deficiency it causes...ergo...the treatment for B12 deficiency - whatever the cause - is the same...

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

And here's a link to a treatment alert that warns GP's to treat immediately with injections in the presence of neurological symptoms - even if B12 levels are normal (or in your case, raised due to the now stopped B12 injections). This document may be valuable as evidence for your GP because they may not have heard of subacute degeneration of the spinal cord - a potentially irreversible neurological condition that can occur if B12 deficiency is untreated OR under-treated. (Not suggesting you have this, just that it might sharpen your GP's thinking a little if it's pointed out as being caused by insufficient treatment (and 50mcg B12 tablets are certainly I sufficient).

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

Couple of other things that you may or may not have seen - may help...

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

The bottom line is that you should (as others have said) be receiving injections every other day until no further improvement. So yes...push for the more frequent injections (your long-terms chances or recovery and ongoing good neurological health depend on getting intensive treatment with B12 injections as soon as possible.

The longer your are under-treated for the neurological symptoms caused by the B12 deficiency, the greater the chance that some may become permanent - and I'm not so sure that your GP is fully aware of that (if they were, or it was them being affected - then injections would be issued pronto!).

Also - referral to a neurologist is usual to rule out other potential causes for your neurological symptoms - a positive Romberg's is a classic symptom of B12 deficiency - but can also be caused by other neurological conditions too - so - ask your GP to refer you to a neurologist (if they're reluctant, ask them to explain why you fall over every time you close your eyes 😬).

So...very best of luck with this...let us know how you get on 👍x

[fbirder in reply to LuluCops]

For the vast majority of the population folic acid is just as good as methylfolate and it is one-tenth the cost.

b12science.com/B12Science/D...

[LuluCops]

Foggyme, here is the link I was referring to, it’s very informative and explains why it is a better form for the body to process and utilise.

chriskresser.com/folate-vs-...

[Marz in reply to LuluCops]

Foggyme will not have seen your reply as you replied to OP !! I know easily done !!

[LuluCops in reply to Marz]

Marz, for some reason I can’t tag people on my phone using the app, only when I’m using the web page. And I did t realise I’d replied to the OP- oops!

[Marz in reply to LuluCops]

Foggyme - there you are !

[LuluCops in reply to Marz]

Thank you Marz x

[Foggyme Administrator in reply to LuluCops]

Thanks LuluCops.

Sorry, but this website presents it's information and associated annotated research in a very selective way...and receives payment for product placement (in this case, Solgar methylcobalamin): so has an inherent bias at it's basis.

Whilst on the face of it it may appear informative, it's very selective in it's presentation of the issues (for instance, there's no mention of the fact that methylcobalamin can be equally detrimental in cases of over-supplementation - or that some people react very badly to it).

In short...here are a few quick comments about information in the link...

1) Article indicates that it is 'fact checked'...(how, and by whom?) BUT...much of the footnoted material in the article is very old (early 2000), most is duplicated and represented several times, one of the footnotes is a link to a blog that no longer exists (not a good fact checking mechanism), and one of the links leads to a 'click-bait' site.

2) there seems to be a predominate focus on an 'alarm' raising presentation of research materials about potential links to cancer (colorectal / prostate - and in post-menopausal women). However, when you read the papers, none of them suggest a causal link link between folate supplementation and cancer. Some suggest a beneficial link in cancer prevention (folate as an inhibitor of cancer), one suggested there is no statistical evidence to demonstrate colon cancer. (Indeed, some researchers elsewhere suggest that folate deficiency itself can lead to colon cancer).

3) some of the papers he uses to support his 'fact checked' position make no distinction between methylfolate and folic acid...they speak only to folate. In short, the research material presented does not support his hypothesis that methylfolate is the 'best' form of folate...or that folic acid has a proven harmful effect on the body - rather, there is a tendency to use a know 'thing' (that over supplementation with folic acid is potentially harmful long-term) and use this to suggest that methylfolate would be 'better' (whilst failing to mention that the same can be said of methylfolate).

4) There are also issues to do with small sample sizes in the research quoted (too small to be statistically relevant - which one of the papers actually quoted), and poor controls / variables etc.

So...KrisKesslers article (to my view anyway) does not take a well balanced or unbiased position...indeed the research material presented in no way underpins or supports his position (in some cases, it is positively contradictory). Not least, I am always alert to (and suspicious) of the potential for inherent bias when product placement (and payment for such) is involved.

I'd quite like to give a more detailed and precise critique of the underpinning research that's used...and debate some of the arguments presented...but sorry, I don't have time (or post-Christmas energy) to do that right now.

A balanced debate - underpinned by the most recent research - of the merits (or not) of all the folate would be extremely interesting 😉

So, to re-iterate, as I said above...

1) Methylcobalamin is not the 'best' form of folate...it's one form of folate.

2) The majority of people are fine taking folic folic (but only if they need it and do not over-supplement)

3) Some find the methylcobalamin works better for them (with the same proviso - only in the presence of a proven deficiency and no over-supplementation)

4) Some react very badly to methylcobalamin- so it's certainly not the 'best' form for them.

5) Over-supplementation with ANY form of folate can be detrimental to long-term health.

6) More research is needed into all forms of folate and the impact of supplementation (long-term or otherwise).

So...the bottom line...there is no 'best' or one-size-fits-all solution to folate supplementation...but oh how much easier it would be if there were 😉.

[Survivorette]

don’t give in to negativity and believe it’s permanent. Sounds like your cancer team may be best bet to get you frequent injections. Insist on injections. Learn to self inject.

[pejka62]

Learn to give yourself shots and find a doctor who will prescr. at min 1 or 2 shots a week. My first doctor wanted to only give me one shot and test 2 days later which is crazy because it will be much higher than normal for several days or weeks later. I got a new doctor you got me 52 shots weekly for one year of B12. Still had nerve damage that I live with today but is I didn't find that new Doc , I probably would be in a wheelchair today.