When hav­ing mem­ory loss is a sign you need more vi­ta­min B12

But get­ting the right treat­ment can be hard, as Suzie found

Irish Daily Mail - - Good Health - By AMANDA CA­BLE

WATCH­ING footage of singer Suzie Mac per­form­ing live on stage, it’s easy to see why she was spot­ted by record scouts on the look­out for new stars. Just over a year ago, her youth­ful en­ergy was elec­tri­fy­ing.

How­ever, fast-for­ward 14 months and Suzie some­times strug­gles to walk even a few yards on crutches.

Even the slight­est ex­er­tion can leave her bed­bound for days, sleep­ing for up to ten hours at a time. Her limbs are con­stantly numb and weak, and her hair has fallen out in clumps.

Her mem­ory is so poor she can hardly re­mem­ber the words to her own songs.

Suzie, 25, says: ‘My low­est mo­ment was when the doc­tor asked me my par­ents’ names and I couldn’t re­call them.’

But it is not a rare, trop­i­cal ill­ness that’s had this ef­fect. Her neu­rol­o­gists say it is vi­ta­min B12 de­fi­ciency, a prob­lem that ex­perts be­lieve thou­sands may have.

Vi­ta­min B12 — found in red meat, fish, dairy prod­ucts and for­ti­fied ce­re­als — is im­por­tant for brain and ner­vous sys­tem func­tion, helps the body pro­duce red blood cells, con­verts food into en­ergy, and plays a role in reg­u­lat­ing mood.

Most peo­ple ab­sorb it nat­u­rally without prob­lem, but de­fi­ciency is not un­com­mon — par­tic­u­larly among older peo­ple.

‘Stud­ies have shown that at least 10% of peo­ple aged 65 and over are de­fi­cient,’ ex­plains David Smith, a pro­fes­sor emer­i­tus of phar­ma­col­ogy and an ex­pert on the con­di­tion.

‘As we get older, we don’t pro­duce as much of the stom­ach acid and en­zymes which break the B12 off the pro­teins in food, so we don’t ab­sorb it as well.’

At least 20% or more of ve­g­ans and veg­e­tar­i­ans are de­fi­cient, he says.

And some peo­ple are un­able to ab­sorb the vi­ta­min nat­u­rally in the in­tes­tine. These in­clude pa­tients with per­ni­cious anaemia, an au­toim­mune con­di­tion where the body at­tacks cells in the stom­ach that pro­duce a pro­tein called in­trin­sic fac­tor, which helps it ab­sorb B12.

Con­di­tions such as Crohn’s dis­ease, where there is in­flam­ma­tion of the di­ges­tive sys­tem lining, can have a sim­i­lar ef­fect.

Pa­tients tak­ing acid re­flux med­i­ca­tion long-term can also be­come de­fi­cient, as it in­hibits acid se­cre­tion in the stom­ach, which, in turn, lim­its the body’s abil­ity to ex­tract B12 from food.

DI­AG­NO­SIS typ­i­cally in­volves a blood test to check lev­els of B12. Doc­tors can also look for en­larged, or ‘macro­cytic’, red blood cells. The body needs B12 to help with cell di­vi­sion; without it, un­di­vided cells will sim­ply grow big­ger.

The def­i­ni­tion of de­fi­ciency is a read­ing be­low 148 pmol/L. But some ex­perts main­tain that thou­sands of pa­tients with higher read­ings than this are still not get­ting enough.

‘The tra­di­tional cut-off val­ues for de­fi­ciency are too low and de­fi­ciency is more com­mon than gen­er­ally thought,’ ex­plains Pro­fes­sor Smith.

‘We have ev­i­dence that peo­ple suf­fer harm from lev­els up to 300pmol/L, yet they re­ceive lab re­ports say­ing their lev­els are nor­mal. That’s why it’s im­por­tant to ask for your ex­act level if you’ve been tested.’

The signs of de­fi­ciency — which typ­i­cally in­clude tired­ness, mus­cle weak­ness, dis­turbed vi­sion and numb­ness or tin­gling — are in­sid­i­ous and slow to de­velop, he says, so ‘peo­ple of­ten think they are just get­ting old’.

‘Or they may go to the GP and they some­times are mis­di­ag­nosed with de­pres­sion. This con­di­tion isn’t ob­vi­ous like a heart at­tack or a stroke, it builds up slowly.’

But early treat­ment can make a big dif­fer­ence, says Pro­fes­sor Smith. ‘Mem­ory loss is one of the key signs of ad­vanced de­fi­ciency. If they are caught early enough, the neu­ro­log­i­cal signs can im­prove af­ter treat­ment.

‘We did a clin­i­cal trial in Ox­ford on peo­ple with mem­ory prob­lems. They had mild cog­ni­tive im­pair­ment, but had not been di­ag­nosed with B12 de­fi­ciency, hav­ing not met the of­fi­cial cut-off.

‘How­ever, we gave them 500mcg of B12 ev­ery day for two years and al­most halted the shrink­age of the brain and slowed the mem­ory loss.’

Dr Ran­gan Chat­ter­jee, a GP and pre­sen­ter of the BBC se­ries Doc­tor In The House, says GPs need more ed­u­ca­tion to spot the symp­toms: ‘Ev­ery week, I see pa­tients whose test re­sults are tech­ni­cally nor­mal, yet who are still com­plain­ing of vague symp­toms. One pa­tient, aged 36, kept fall­ing asleep with ex­treme fa­tigue and suf­fered night sweats, wak­ing up with his sheets drenched.

‘When I put him on vi­ta­min B12 sup­ple­ments, he said it was like switch­ing a light on.’

Dr Chat­ter­jee says there is no harm for pa­tients in try­ing sup­ple­ments for four weeks as any ex­cess is ex­pelled through urine. ‘Peo­ple can also help them­selves by eat­ing an­i­malderived food, par­tic­u­larly liver and liver pate (a good source of vi­ta­min B), milk and fish, es­pe­cially shell fish.’

Suzie Mac’s B12 de­fi­ciency ap­pears to have had a more un­usual cause. Her health de­te­ri­o­rated dra­mat­i­cally fol­low­ing an ex­treme al­ler­gic re­ac­tion (known as ana­phy­laxis) to peanuts. Af­ter a gig in Fe­bru­ary last year, she ate a spoon­ful of curry that con­tained nuts. Suzie’s mouth, tongue and throat im­me­di­ately swelled. She vom­ited and col­lapsed, and had to be taken by am­bu­lance to hospi­tal, where she was kept overnight.

‘Af­ter that I was drained of en­ergy. Over the next few weeks I couldn’t keep awake,’ she says. ‘I had a ter­ri­ble stab­bing pain be­hind my eyes, and pins and nee­dles in my arms and legs. My hair also be­gan fall­ing out.

‘In June, I went on a song­writ­ing work­shop in Spain. I couldn’t re­mem­ber the lyrics or melody of songs I had just writ­ten. One night, I had se­vere cramp and fell to the floor. I lay there for hours, too weak to move.

‘On the flight home, my legs be­came numb and swollen and my mum raced me to hospi­tal.’

Suzie was ad­mit­ted for tests, in­clud­ing MRI scans (to rule out a brain tu­mour) and a lum­bar punc­ture, where a nee­dle is in­serted into the spine to ex­tract fluid. Tests re­vealed her vi­ta­min B12 level was just 155.

Ex­actly why her al­ler­gic re­ac­tion led to this re­mains some­thing of a mys­tery. There is no known link be­tween ana­phy­lac­tic shock and vi­ta­min B12 de­fi­ciency, al­though Pro­fes­sor Smith in­sists more re­search is needed to rule one out. ‘It could just be a co­in­ci­dence or it could be that per­ni­cious anaemia is linked to se­vere al­lergy be­cause both in­volve the im­mune sys­tem,’ he says.

ONCE di­ag­nosed, Suzie was treated with hy­drox­o­cobal­amin, an in­jectable form of B12, with eight 1 mg doses over three weeks (injections are given in more se­vere cases to en­sure it is ab­sorbed straight into the blood­stream). This was then dropped to one jab ev­ery three months, de­spite guide­lines which say those with neu­ro­log­i­cal symp­toms such as mem­ory loss and de­pres­sion should re­ceive more fre­quent treat­ment.

Suzie had shown ini­tial im­prove­ment with the higher dose of B12, but de­te­ri­o­rated fast when the dose was dropped, and had to move in with her par­ents.

‘Some peo­ple need the injections more than one ev­ery three months,’ says Pro­fes­sor Smith.

‘We need fur­ther re­search, be­cause many GPs won’t in­crease the dose, and pa­tients are forced to buy B12 over the in­ter­net in des­per­a­tion, in­ject­ing them­selves to re­lieve symp­toms.’

To re­duce the risk of de­fi­ciency Pro­fes­sor Smith says over-50s should take a 500 mcg vi­ta­min B12 tablet daily with food. He is also push­ing for vi­ta­min B12 de­fi­ciency screen­ing in mem­ory clin­ics.

Mean­while, Suzie is fundrais­ing for treat­ment with Dr Stephen Dre­skin, an al­lergy and im­munol­ogy spe­cial­ist at the Univer­sity of Colorado in the US who has re­searched a pos­si­ble link be­tween ana­phy­laxis and B12 de­fi­ciency.

‘I’m fight­ing to get my life back,’ she says. crowd­fun­der.co.uk/suziemac mu­si­can­dmeds/up­dates

Low en­ergy: Suzie Mac Pic­ture: SWNS

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