CFS support group and access to B12 injections in South Wales

[Grayswood]

The wife of someone I know has been suffering from CFS since the birthday of her daughter. They live in South Wales.

Does anyone know of a support group locally or any way of sourcing B12 injections in South Wales?

Many thanks.

Kind regards,

Graham

[wedgewood]

Wherever we live in the U.K. we have to obtain B12 ampoules for injection from German online Pharmacies . Information below . Some beauty clinics do give B12 injections . This is legal as long as they don’t make any medical claims for them , but it’s obviously d pensive . Self-injection is easy and cheap ( about £1.60 for everything , ampoule, 2needles , 2ml syringe , swabs ) and a sharps disposal box . I suggest reading an excellent book by Dr Sarah Myhill , who has made it her life’s work to help Chronic Fatigue Syndrome patients . To purchase on Amazon . “ Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis “ £ 13.85

Where to obtain requirements for self-injecting VitaminB12,for Pernicious Anemia patients /B12 deficient patients .

Certain German online pharmacies can supply U.K. with B12 ampoules , because no prescription is required in Germany for this harmless vitamin , which cannot be overdosed , no matter what your doctor might tell you .

Since Brexit on January 1st when we withdrew from the single market , it has become more difficult for online Pharmacies in Germany to supply us, and some pharmacies have given up . So we now have to search afresh . Here are some that will deliver to the U.K. These pharmacies are controlled and inspected by the German health authorities , and are therefore safe sites .

bodfeld-Apotheke.de Site is in German , so you may need to use a translation app or use Google Chrome . Courier charges €9.89, no matter how many you buy

apohealth.de You can get this site in English by clicking on the American flag on the top right of 1st page . Postal charges .

Needles , syringes , swabs and sharps boxes ( for disposal of needles ) can be obtained from

medisave.co.uk

Needles can also be obtained from

exchangesupplies.org

I use Rotexmedica B12 depot. These are single use ampoules 1mg x 1ml Hydroxocobalamin, as is used in the NHS .

[Sleepybunny]

Hi,

Please take a few days to sift through the info below. I am not medically trained.

It's possible that some links may have details that could be upsetting.

I think too many people get a diagnosis of CFS when there may be a treatable cause of symptoms.

NICE guidelines on ME/CFS suggest a person should not be diagnosed with ME/CFS until other possible causes of symptoms have been excluded.

B12 deficiency is sometimes misdiagnosed as ME/CFS.

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

b12deficiency.info/misdiagn...

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

"since the birthday of her daughter"

Do you mean she has recently given birth?

If she has recently given birth, I am wondering whether she used gas and air mix during labour. Gas and air mix contains nitrous oxide gas which inactivates B12 in the body.

My impression is that many midwives, doctors and other health professionals lack knowledge about how use of nitrous oxide may lead to symptoms of B12 deficiency.

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

I suggest she accesses her blood results and checks to see whether she has any results that are suggestive of B12 deficiency or folate deficiency or iron deficiency.

In relation to B12 deficiency, I look particularly at B12, folate, ferritin or other iron tests and full blood count (FBC).

Some forum members also find they have Vitamin D deficiency.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

Get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc and keep a copy in a safe place in case needed in the future.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.

Point 5 mentions Functional B12 Deficiency, where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells so the patient develops symptoms of B12 deficiency.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion. Keep copies of any letters sent or received.

Has she had any thyroid tests?

Suggest she puts any thyroid results on Thyroid UK forum on HU.

Thyroid tests

thyroiduk.org/getting-a-dia...

Any test for diabetes and other auto immune conditions eg coeliac disease?

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

I'm assuming that her doctor has excluded the possibility of Covid infection.

There is a big overlap between the symptoms of ME/CFS, B12 Deficiency and Long Covid.

I know from personal experience that once labelled with ME/CFS/Fibromyalgia...some doctors think their work has been done, diagnostic box ticked etc..no need to do anything else.

Current NICE guidelines on ME/CFS do not specify that doctors should test for B12 deficiency so she may need to be assertive to get tests.

NICE are in the process of reviewing their guidelines on ME/CFS.

More about this on ME Association website.

meassociation.org.uk/

I suffered for years and kept asking if it could be B12 deficiency as I had many typical symptoms and had had one set of loading doses in past after a low B12 result. Eventually I deteriorated to the point of dementia symptoms and spinal symptoms...I felt I was not a proper mum or wife .

I was forced to treat myself when NHS continually refused to treat me.

It's possible to have severe B12 deficiency with B12 results that are well within normal range.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

NICE CKS B12 and Folate deficiencies

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Each CCG/Health Board/NHS Hospital Trust will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest tracking down the local guidelines on B12 deficiency for her part of UK.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF link further down page.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. There are two PAS support groups in Wales.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No face to face meetings at moment.

B12d.org has held some online Zoom meetings but not sure if these are still happening.

b12d.org/event

Stichting B12 Tekort

Dutch website with English articles

(Units and ref ranges for blood tests may vary from those in UK)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Vital to get adequate treatment if a person has B12 deficiency. Untreated or under treated B12 deficiency increases the risk of permanent neurological damage.

Does she have any neurological symptoms and if so does her GP have a list of them?

If neuro symptoms are present has she been referred to a neurologist?

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

I have written other detailed replies with more B12 info on this forum which may be of interest.

I'll add a couple of warnings based on my personal experience.

1) In some parts of the UK, ME/CFS is sometimes treated as a mental health condition.

WHO (World Health Organisation) classifies ME/CFS as a neurological condition.

2) B12 deficiency is not always well understood by health professionals

I hope she finds the help and support she needs.

[Sleepybunny]

Hi,

I hope your friend's wife is getting the support she needs.

I found these links about the draft guidelines NICE has published on ME/CFS.

nice.org.uk/news/article/ni...

nice.org.uk/guidance/indeve...

They are draft guidelines so could be a few years before final version published.

I mentioned in my other reply that a diagnosis of ME/CFS is a diagnosis of exclusion, meaning a GP/specialist doctor should exclude other possible diagnoses before diagnosing ME/CFS....but be prepared for an unhelpful GP who does not want to consider other possibilities.

I hope her GP has excluded other possibilities such as.....

1) B12 deficiency - which can have a variety of causes including

diet

PA

coeliac disease

exposure to nitrous oxide

H Pylori infection

Crohn's disease

Internal parasites such as fish tapeworm.

Some medicines/drugs have been associated with B12 deficiency eg

metformin ( a diabetes drug)

some anti-epileptic drugs

PPI drugs

pulsetoday.co.uk/news/clini...

Concerns about medicines/drugs should be discussed with a doctor.

2) Lyme disease

lymediseaseaction.org.uk/

There's a big overlap between the symptoms of Lyme infection and B12 deficiency and ME/CFS.

I've been tested several times for Lyme.

3) Thyroid Issues

Thyroid UK forum on HU

healthunlocked.com/thyroiduk

Thyroid UK website

thyroiduk.org/

She could access her medical records and see what blood tests have been done in the past which should give a clue as to what diagnoses GP has excluded already.

Some members on this forum have found a gluten free diet helpful even if they do not have coeliac disease.

Coeliac UK website

coeliac.org.uk/home/

If she has any gut issues she could ask for a referral to a gastro enterologist. A gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H pylori etc.

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in above flowchart for more info.