Folic acid = tummyache!

[Myoldcat]

Hi all, I am meant to take one 5mg tablet of folic acid with each injection, that's every 2/3 days. These were keeping my levels high but the tablets give me stomach ache and discomfort, so I switched to daily liquid drops (methylayted) of 400 micrograms per recommend dose. This also seemed to work although I haven't had a blood test since switching. Then I ran out and a lot of the dreadful twitching and internal tremors returned within a couple of weeks. My question - has anyone found higher strength drops? I don't think I specifically need a methylated version. I know I could just take more but this particular tiny bottle costs a fortune!

[Technoid]

Have you trialed lower dose tablets (400mcg)? I won't bang about the 5mg again as I'm sure everyone has heard it all before (oops, I lied 😆) 😀

[Myoldcat in reply to Technoid]

Hi Technoid, yes I've seen your references to this before. I was given this schedule by the Cambridge consultant, advised to take the 5mg each time I inject. Do you know where this protocol originated? And if my levels are high to mid range, should the standard daily 400mcg be enough? I felt it was ok, but having run out for just a couple of weeks, I was dismayed at how speedily and strongly the tremors returned so went back to 5mg. Such a balancing act!

[Chickens44 in reply to Myoldcat]

Cambridge consultant also advised at initial appointment to take 5mg folic with every other day injection. However, now my Folate level is good he said to reduce the folic to once a week. But to keep an eye on the level.

[Myoldcat in reply to Chickens44]

Thanks! There are such a lot of conflicting thoughts on folic acid, it leaves me feeling very 🤯

[Chickens44 in reply to Myoldcat]

Me too! 😵‍💫

[Technoid in reply to Myoldcat]

Myoldcat "Do you know where this protocol originated?"

No and actually no can explain it that I have seen or heard. I've certainly never read a paper on treatment of B12 deficiency (and I've read plenty of them), including from experts like Bruce Wolffenbuttel that mention that this level of folic acid supplementation would be necessary. It is touted as a protocol to follow in a B12 deficiency group on facebook. I think its just the blind leading the blind. Why follow a protocol when no-one can defend it or explain why it it would be needed. It's a bit ridiculous if you ask me.

[Myoldcat in reply to Technoid]

Thanks for clarifying Technoid. It's certainly an area of confusion for me! As mentioned I'm going to have a blood test asap and tailor my dosage from there.

[wedgewood]

I agree with Technoid .

[Nackapan]

I used 400mcg tablets of folic acid daily. No problems. Then had to reduce .

[Littledancingtiger]

GP can prescribe a liquid folic acid - they just did for me. It’s dosed with a syringe so you can take it in 200-5mg amounts by using the gauge on the syringe.

[Myoldcat in reply to Littledancingtiger]

Thank you, this sounds a good option.

[Littledancingtiger in reply to Myoldcat]

The tablets give me stomach ache this is fine

[Littledancingtiger]

also agree you don’t need 5mg you just need whatever keeps your levels good I never took 5!

[Myoldcat in reply to Littledancingtiger]

Yes, I'm moving towards that view, but don't want to feel poorly again! My gp only does bloods every 6 months which feels like a long time to go without knowing actual levels.

[scnuke]

I used 5mg for a short time when I started my twice daily injection routine. It did not sit well with me at all. I suffered terrible GI upset. I went back to 800 mcg and things returned to normal. All I can suggest is to get your folate levels checked and if you are in the upper third of normal range, you do not need 5mg and can safely take 400 - 800 mcg depending on your injection frequency. Good Luck.

[Myoldcat in reply to scnuke]

Thanks, my stomach is not loving the 5mg even if the twitchy rest of me needs it! I will see if the gp will bring my blood tests forward and go from there.

[Cherylclaire Forum Support]

My ferritin and folate were initially very blippy - up and down depending on supplements. Never seemed to stick for the first few years, and can even now be a problem. Monitoring direction of travel is important and reliant on regular testing by GP. Otherwise impossible to disentangle symptoms alone.

I had three months of strong supplements from the NHS at first, then up to me. I did need 800 mcg folic acid for quite a while, and GP wanted ferritin at 60 ug/L to avoid symptoms, Oral meds consultant preferred above 80 because of angular cheilitis and burning tongue. Not as easy to maintain.

[Nackapan in reply to Cherylclaire]

I find ferritin hard to maintain at 'good levels ' First blood test it was 61ug/L

I had symptoms at 29ug/L

Took ferrous fumarate 210mg as the higher dose prescribed by G.p was 320mg ferrous fumarate infusedwith folic acid made me ill.

A never again moment.

The highest I've ever got my ferritin level is 58ug/ L

Now despite taking low dose iron 20mg and sachets of liquid iron 5mg .

Eat meat ect.

Last blood test ferritin 38ug/L

So continue with 6 monthly blood tests .

Were 3 monthly then 4 monthly.

I've always had to ask for a blood form.

So far that's one thing not refused.

I was told o maintain ferritin above 50ug/L( managed this once in 5 years )

To aim for 70ug/L

If hairloss one of the symptoms .

I think the first level of 61ug/ L must've been elevated by inflammation in my body in Hindsight .

The blood markers at the time showed high levels of inflammation.

Even when very ill the only thing my bloods showed was severely low serum B12

Folate a bit low.

And very high inflammation markers .

Bloods never give the full picture .

Strange now to think I wanted to see something wrong with every test as something to work with !

Also hard to realise I will probably never know the reason .

Just know years of frequent B12 injections only thing getting me back.

Other meds dealing with the pain along the way

I've never needed iron supplements before B12 deficiency.

Vitamin D levels I struggle to keep in range too.

I always take vit D daily.

Level had dropped to 19(above 75)

Never managed to get it above 70??

Sits around 65 presently.

Take 2-3000 iu vit D daily with k2 after initial loading doses 7 yesrs ago.

HB also lower than my old norm but in range .

I wonder if some of the ranges should be divided into 3 age brackets ?

Perhaps FlipperD doing blood tests for years saw any patterns that were observed that were age related ??

So important to keep our own blood test results for individual patterns and levels.

An individual base level.

Always wish a B12 level was done at least once prior to my first ever one at 57!!

A must for inclusion of 'full bloods ' taken .

I've asked this at every opportunity to be put 'on the screen ' to be ticked as I didn't know what to ask for ,many dont.

If mine was done on 'well woman' health check at 50 as a known risk factor with age and hormonal changes.

I might be in a different place .

I remember asking about

vitamins and minerals I might need now .

Had my list of questions.

Told my weight was fine . B.p fine No time to answer list . Bye bye

I was lost for words

As saw the same nurse later on think just unlucky.

Useless at B12 injections too.

Preventative work 'pays off' saves health and NHS money.

Always hard to audit though .

Short sighted to stop.

Only proven when is stopped.

At whoose cost though.

Perhaps the way to go is medics train only in one area of medicine from day one.

You'd never study art, maths ,zoology, knitting in the same degree .

So a symptom checker sends you to correct doctor at Junior level. As better to to know ond area better than than basic for all.

G.ps are expected to know too much and miss too much .

Also have too much power.

In my opinion

[Cherylclaire Forum Support in reply to Nackapan]

I also never had a cause for ferritin, folate, vitamin D or B12 to be tested to my knowledge - so as you always say, no base line to work from. What is "my normal " ?

The only thing found for me was a B12 level just 1ng/L below normal range ( 2016): B12 injections started.

Then lowish folate and ferritin (2016): 3-month treatment given initially.

Then raised MMA (2016): restarted with 2 per week B12 injections and functional B12 deficiency diagnosed.

Saliva duct strictures (2012): procedure to stretch strictures.

Then osteoporosis of the spine, osteopenia of the neck (2017): Risedronate and vitamin D prescribed. Stopped taking Risedronate when jaw pain started. Replaced with Raloxifene.

Then "flattened mucosal pattern (duodenum)" and "patchy gastric metaplasia" (2018): Coeliac disease ruled out.

Then ventricular ectopics (2019): statins offfered. Refused.

Then coronary artery calcification (2023): statins prescribed.

I think that having an experienced GP who has seen you at your worst, observed improvements, has been listening, is supportive and is proactive in testing, monitoring, getting advice, referrals (pushing for you) and then continuity of that care is the only way forward if answers are to be found.

But not that easy to find.

Power can also be a good thing - doubt a junior doctor would have had the confidence and experience needed to push as hard on my behalf, or request EOD injections from nurses - for 6 months. Despite being legitimate treatment advised by NICE, very "off-piste" for my surgery.

[Nackapan in reply to Cherylclaire]

Yes power can be a good thing from a well informed experienced doctor .

Power not good though if refusing treatment or refusing to refer on to another with more knowledge or expertise.

Or 'shutting doors ' to more investigation .

That's when helpful to see another if hitting a brick wall.

Fortunately my surgery had 6 gps to wade through until one actually listened and I got more bloods tests including B12 .

Also a brain MRI and CT scan .

She was concerned .

5 others would've had me heavily sedated and on the wrong pathway.

So glad I moved on to thd next and the next and not just believe the first one .

A junior doctor 'should ' be more open to learning and getting advice .

To triage to appropriate clinic/ doctor .

Just thoughts as a way forward with the present system that is failing alot .

Thd lottery as to who you see and what treatment you get or don't get so awful at present as far as B12 goes.

[Cherylclaire Forum Support in reply to Nackapan]

Yes, exactly. Must be even worse at surgeries where few doctors and so little choice. Harder also to get decent referrals where remote and no regular links with major hospitals. Shame you had a choice of 6 - and only 1 concerned: a disheartening ratio.

The hope that juniors are more open to learning and getting advice sounds as desperate a wish as mine for a supportive, listening and experienced doctor.

My surgery used to have dedicated GPs for certain conditions, experts in chosen fields of interest - can't remember B12 deficiency ever being one of them !

Would perhaps be of more use to send a surgery nurse on an "Understanding B12 Deficiency, Symptoms and Treatment" course. Think I'd be quite happy to chip in with that:

Lesson 1: early removal of ampoule from fridge .....

[Nackapan in reply to Cherylclaire]

Yes we have trained diabetic nurses .You are so right about lesson 1 of their training for treating B12 deficiency !!

[A1298C]

Folic acid is synthetic and problematic for many people. The natural alternatives are methylfolate or folinic acid. There are cheap options on Amazon.

[Myoldcat in reply to A1298C]

Thanks, will check thatbout.

[Nackapan in reply to A1298C]

Yes lots of options. I didntny get on with methyfolate .

We all so different .

I think large doses if any sort csn cause horrid side effects though