More advise

[Andypandy30]

Iv mentioned my niece here before and her neurological symptoms are getting worse with no help from her doctor . She has extreme fatigue , brain fog , crying spells , vision problems ,numbness , cold hands and feet , confusion , can’t think straight , poor memory to name a few . She had her active b12 done Over a month ago which showed a result of 61.9 (>37.5) ferritin 21.3 (13-150) and folate serum 5.06 . She then had her b12 serum done by gp which case back at 324 . She explained family history and all her symptoms ( she had her son almost a year ago also ) gp listened and then left her a prescription for folic acid 5 mg . No b12 ! Fast forward to now she had an emergency appointment with a different doctor who said u set no circumstances would her symptoms be down to b12 deficiency despite her dreadful state and in tears throughout . Asked her if she could be pregnant she’s not ! And told her all was due to her having her baby . But she would do her thyroid bloods as this can mimic b12 deficiency symptoms . I know this is a similar story to a lot of people experience but my concern for her is that We’d have to go through another waiting game to get her treated and precious time will be wasted . So I thought if we could sort something now for her she’s 22 . We’ve found a health clinic that gives b12 by injection at an expensive 40 pounds . Would this be a good way to get her started on a trial to see if her symptoms lift . Otherwise it’s going to take a long time to get through to her doctors a lot of angst and paperwork . She needs it now rather than later . And yes it will then affect her blood levels but they aren’t even offering her further testing . Has any one else has this done at one of these ‘ health clinics ‘ ? Is it a safe option . Many thks

[Margaret-S]

Hi Andy. So sorry to hear about your niece. These symptoms are strikingly similar to what I had with M.E. now I'm not saying that's what it is but it can be hiding among other issues and get missed. Sometimes called Chronic Fatigue and is a very crippling illness. In spite of many doctors negative attitude to this it is a horribly real condition which robs the sufferer of good life quality. I know as I struggled for years. Worth a thought maybe?

Hope you are doing better yourself Andy and also your daughter. I wish you a Happy Christmas and New Year which I pray is better for you than this year has been. Take care 🌞

[Andypandy30 in reply to Margaret-S]

Thank you Margaret . I’m not sure about the ME as her mum was diagnosed with that and it turned out to be the b12 deficiency underneath it all . We all live so far apart from each other and trying to help each other with doctors who don’t listen . It’s hard . I private messaged you a while back . Hoping your doing ok Margaret xx

[theverytiredperson]

You could get a methylmalonic acid test (MMA). This is a very sensitive marker for B12 deficiency and is useful if serum B12 levels are "normal". If She has a B12 deficiency at cellular level then her MMA levels will be elevated, even if other tests are not reflecting this. You can can the test from medichecks.com and also from St Thomas Hospital London. It is a cost, but if her doctors are being unhelpful and there is a family history of undiagnosed B12 deficiency then it could be worthwhile to get this test. I dont think GPs will offer this on the NHS though, its usually only done after a consultant referral.

[Sleepybunny]

Hi,

Have you looked into getting her an appointment with private GP? She would need to pay for appointment and then extra for B12 injections if they were willing to prescribe them.

Just search "private GP + name of her area"

The only problem is that once she gets B12 injections from outside the NHS she could be stuck with treating herself for ever as her blood levels will rise and GPs may say there is no problem.

Has your niece considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

Has she been tested for PA and Coeliac?

"She explained family history and all her symptoms"

My experience was that GPs often ignore info passed on verbally so I'd suggest writing a letter to GP. See link underneath.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic with serum b12 result in range.

She could put symptoms list, test results, family medical history, extracts from UK documents into letter.

She might be able to get a "usually" free second opinion from the charity HDA patient care trust. They use a network of UK doctors. I have read mixed reviews of their service.

HDA patient care trust

hdapatientcaretrust.com/

However seeing a specialist privately or on NHS is no guarantee of better treatment; I speak from personal and expensive experience.

If all else fails some on forum resort to self treatment but same problem in that this could mean a person has to treat themselves for the rest of their lives if they have an absorption problem. I feel it is an absolute last resort.

Might be worth her keeping a symptoms diary that tracks her symptoms; could be useful evidence of deterioration if she remains untreated and if she gets treatment, of improvement.

ME/CFS

I think quite a few of us on here probably has a diagnosis of ME/CFS/Fibro prior to finding out about b12 deficiency.

martynhooper.com/2018/02/10...

b12deficiency.info/misdiagn...

b12deficiency.info/blog/201...

Third link mentions that NICE guidelines do not currently suggest testing B12 levels in patients with ME/CFS. I have heard that NICE are in the process of writing new guidelines for ME/CFS that hopefully will include testing B12 levels as routine.

"But she would do her thyroid bloods "

I bet GP only tests TSH. This won't give a full picture of thyroid function. I suggest she puts any thyroid results on Thyroid UK forum on HU and considers getting other thyroid tests privately.

Thyroid tests

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

"left her a prescription for folic acid 5 mg"

Treating folate deficiency without treating any co-existing b12 deficiency may lead to neurological problems .

See Management section in next link about folate deficiency

Folate Deficiency

patient.info/doctor/folate-...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Has she got results for a Full Blood Count?

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

There's a lot of detailed B12 info in this thread below that I replied to. Your niece may find something in there that is useful.

healthunlocked.com/pasoc/po...

Does she have online access to her medical records? Details of how to do this should be on GP surgery website.

I am not medically trained.

[wedgewood]

Necessary equipment for self-injecting B12 , and sources for UK patients.

ALWAYS WASH YOUR HANDS THOROUGHLY BEFORE STARTING THE PROCEDURE

Packets of Hydroxocobalamin ampoules 1mg x 1ml Rotexmedica B12 depot Obtainable in packets of 10

or 100 ampoules (10 x 10 ) usually at a discount .

Do not forget to ask for Depot , as this indicates that it’s b12 Hydroxocobalamin. Otherwise you could accidentally order Cynocobalamin. which is not generally used in the U.K.

obtainable at the following German online pharmacies —-

versandapo.de ( In German , so you may need a translation app , or use google chrome )

bodfeld-apotheke.de ( you can choose your language on the top right of the site )

The above German pharmacies charge € 9.98 for courier , no matter how many packets you order

amazon,de ( German Amazon ) You can get this site in English You need to trawl through the site and find the pharmacies offering the ampoules that will ship to U.K.

Needles — I use 2 needles , one to extract the liquid from the ampoule , and another to inject .

I use a long coarse needle— 21 G x 1 1/2 “ for extracting, and a finer needle — 25G x 1” for the actual injection . I use the I.M. method ( Intra-Muscular) into the middle outer third of my thigh , where the muscle is nearest to the surface . I use 2 needles because in extracting the B12 the needle will need to touch the bottom of the ampoule , making the needle blunt (ouch!)

I use a 2ml syringe because it is easier to extract every precious drop of B12 by pulling out the syringe plunger and then expelling the air into the b12 . When you then extract the liquid you will obtain every last drop. I then use the finer needle to inject , expelling any air in the syringe , until a droplet appears on the end of the injection needle .

I do use a swab to disinfect the injection spot , but many people say it’s not necessary . I use the same swab placed over the ampoule , and break it at its weakest point , which is indicated by a white spot in the neck . If you are nervous about doing this , there are devices obtainable on amazon.uk ( search for” ampoule opener “)

I’m afraid I don’t know anything about the sub- cutaneous method of injecting .

You will also need a sharps box for your spent needles . Many chemists will accept these free of charge , for disposal.

If you are needle phobic , I have heard of a Danish device that is apparently very useful . Obtainable from unionmedico.com — cost around £100.00 I have not used it , but I’ve heard good reports .

Needles etc can be obtained from medisave.co.uk

You can also find many videos on Utube of self injecting . Some are poor , some are useful .

Hope that this information is useful for you . Best wishes .

If all else fails , self injection is a way out . It is the most efficacious and cheapest way of obtaining B12. There is no danger of overdosing B12 , even if administered daily . At the present time , if bought in bulk ( 100 of everything ) an injection can cost as little as £1.20 . Use -buy date usually

2 1/2 years hence .