Can you get b12 injections from private hospitals?

[Flinder]

I think it is going to be very difficult to get b12 injections for my 17yo from NHS. So I m thinking to pay to have it done to get a peace of mind. Has anyone had b12 or other injections done by their local private clinics.

[Narwhal10]

Hi Flinder,

I’m sorry I don’t have the answer but am interested too. Has your son previously had them, has a diagnosis or has symptoms ?

[cocoa]

Perhaps you could find a private GP in your area.

Good luck with whatever you do.

[Flinder]

It is my daughter. She was diagnosed b12 and iron deficiency 7 weeks ago and has been taking cyanocobalamin since. But it doesn’t seem very effective. She has feeling very stressed. Also sometimes she feel cold and sometimes she feel hot. I just want her to be well as soon as possible.

[Narwhal10 in reply to Flinder]

Sorry Flinder, I’ve no idea why I guessed the gender of your child. Yes, I’m sure you do want her to be well as soon as and it is stressful being ill and for you to see her like that. As Nackapan says below. Plus :-

Get a folder (I mean a physical one ) put blood results, copy all prescriptions so you know what was started on what date (it doesn’t matter if you’ve already put in but from now on), who prescribed it, doses etc. You can take photos on mobile. Any time you have to ring a health professional with time and date , who you spoke to and advice given .

Write down your daughter symptoms, eg freezing cold at 1 pm on Thursday 8 September, hot water bottle and extra clothing helped. Tinnitus at 2 pm etc etc.

I believe 7 weeks without some improvement is pretty rubbish so try the GP again and say that you are prepared to go private. This is pretty new to me but if you want to post results, others can interpret.

Good luck x

[Nackapan]

Was her folate checked too?

If the tablets are not working contact the doctor.

Iron will be tested in 3 months if she is on iron supplements.

What b12 symptoms i s she having? Did you get a copy of the blood results to know what her levels are.

What is her diet like?

What strength tables does she take?

Was vitamin d tested ?

You can see a private Gp as cocoa suggested. Or if neurological symptoms a neurologist.

If your daughters b12 is very low and tablets are not working the NHS should prescribe. It's in the guidelines very clearly stated. The problem usually is getting g enough of them or at frequency needed. If its diet related a higher strength tablet might work.HS a cause or probable cause been given? When I was prescribed 50mg b12 but had to buy them anyway. It was a complete waste of money. My sister has at least 500-1000mcg daily as a vegetarian and they work as she can absorb enough.

I hope you find some a answers to help her

[Flinder]

I will call the GP first thing in the morning tomorrow to get an appointment and also her blood test result.

She is taking 1000ug per day. She mainly stressed about hair loss as you can imagine. She also complains she is tired by afternoon.

What do you mean by “frequency needed” ? Do you main she should take it more often in a day? As I say I prepare to pay private doctor provide it can be sorted out more sooner.

[Flinder]

Can anyone give me an idea how much it will cost to have b12 injection by private doctor?

[Hidden]

Hi, my daughter had a lot of B12 symptoms a couple of years ago in her early 20’s. Seems to run in the family. Her GP had a 2-3 week wait so she went to see a private GP. They did an active B12 test which was pretty low, 40ish, and gave her a course of 6 x B12 injections which costs around £70 per injection . It was in London.

[fbirder]

"It is my daughter. She was diagnosed b12 and iron deficiency 7 weeks ago"

So she has been diagnosed as deficient, yet her GP refuses to give her injections? Why?

Has the GP explained why she is deficient? Has the GP explained why she is not being treated properly?

[LittleA]

I would recommend to see a different doctor in your surgery and go through what’s going on with them and get referred to hematology to find out what’s going on and to clear up the confusion with b12 injections and they can look at things more in depth for you and your child.

If your GP is not helpful you can write a letter to your surgery manager stating your issues and your concerns they will then investigate and if still no luck with that you can go to the health ombudsman and make a complaint to them and they will investigate the practice

Hope this helps, to have a good health shouldn’t be a fight x

[Flinder]

Due to Lockdown everyone was told to just get supplements from shops! I m looking into private gps now

[Flinder]

Just got my daughter’s blood result. To be honest I don’t understand how to read it!

[Narwhal10 in reply to Flinder]

You can post your daughter’s results, if you wish and some of the very knowledgable ones can help. 😉

[Flinder in reply to Narwhal10]

How? You meant post it here?

[Narwhal10]

Sorry, yes I mean you can either take a photo of the print out and put it on here - BUT make sure that her name, date of birth, nhs number, Surgery etc does not show (Confidentiality is imperative)

or

The old fashioned way, type :-

E.g.

serum vitamin b - 250 ng/ L (130 - 900)

Serum folate - 22 ug/L (> 3.0)

Serum ferritin - 14 ug/L (15 - 300)

Vitamin D etc

I hope I make sense.

[Flinder]

How to post attachment in here?

[Flinder]

It has a very long list!

[DoSiDo3]

My doctor's office offers Cyanocobalamin shots free BUT that is not the natural form of B12 and your body has to convert the vitamin. These shots gave me tremendous headaches. I found local B12 Methylcobalamin clinics by searching on FB. After a year of paying between $20-$30 per shot I decided to start doing mine at home. I compared the product I was getting with online compounds and bought from HCG - 877-228-2158. The cost is about $12 per shot. You'll have to fill out health forms and have a physician consult. My mix came with the bottle of B12, shots, and alcohol wipes. They are subcutaneous so I went to Youtube and learned how to administer. (I was so nervous I drank a glass of wine before the first one!) It actually is NOT hard, nor terribly painful. I inject in my thigh then rub it for a bit and walk around. I drink lots of water before and after.

[Flinder]

Good news I managed to persuade the GP to prescribe injections to my daughter every two days starting tomorrow evening. Hope this will make life less stressful for us.

[Sleepybunny]

Hi,

Only just seen your post and thought you might find following info useful.

What does GP think has caused your daughter's low B12?

Does she eat a B12 rich diet eg meat, fish, eggs, dairy etc?

If yes to b12 rich diet then diet as a cause of B12 deficiency is less likely and more likely that there is an absorption problem in the gut.

I suggest she asks her GP directly what they think has caused the low B12.

If GP thinks it's her diet but your daughter eats B12 rich diet then worth writing out typical weekly diet, food and drink and giving it to GP and consider asking for further tests to establish cause.

Dietary B12 deficiency is often treated in UK with low dose cyanocobalamin tablets. If B12 deficiency is due to diet but is particularly severe and/or neurological symptoms are present, guidelines indicate that injections should be given.

If GP thinks cause is not linked to diet then has your daughter been tested at least for PA (Pernicious Anaemia), Coeliac disease and H Pylori infection?

There are many other potential causes including Crohn's disease, exposure to nitrous oxide, damage to terminal ileum (part of gut where B12 is absorbed), some medicines/drugs eg metformin (a diabetes drug), high alcohol intake, infection with fish tapeworm etc....

If PA is a possibility then worth joining and talking to PAS who can offer support and info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

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

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

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Nitrous Oxide

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

H Pylori infection?

patient.info/digestive-heal...

Coeliac Blood Tests

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

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

b12deficiency.info/what-to-...

UK B12 documents and other documents/articles

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK

BNF Hydroxycobalamin

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

BNF Hydroxycobalamin Children

bnfc.nice.org.uk/drug/hydro...

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

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.

NICE guidelines Coeliac Disease

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

NICE guidelines Nitrous Oxide ( see side effects section)

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

I'm assuming you're in UK.

CCGs and Health Boards in UK will have their own local guidelines on treatment of B12 deficiency, Worth tracking down local guidelines for your part of UK and comparing them with BSH, BNF, NICE CKS links as local guidelines often vary from BSH guidelines.

B12 article from Mayo Clinic (US)

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

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

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

B12 deficiency in children (mentions teenagers)

b12deficiency.info/children...

Blog post about parents of children with b12 deficiency

martynhooper.com/2017/07/21...

Parents of children with B12 deficiency are not always treated kindly when expressing their concerns so I think it's helpful to have some extra support.

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info is out of date in this book. See BNF link.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Neuro Symptoms

Vital to get adequate treatment especially if neuro symptoms present. Under treated or untreated b12 deficiency increases the risk of permanent neurological damage.

Neuro symptoms include the following

tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Peripheral Neuropathy (PN)

nhs.uk/conditions/periphera...

PN is often associated with b12 deficiency so worth mentioning any symptoms suggestive of PN to GP.

If neuro symptoms present, has she been referred to

1) a neurologist

2) a haematologist (see link below)

NICE CKS

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

3) if gut symptoms present, has she been referred to a gastro enterologist?

Gastro specialist should be able to spot signs of PA, Coeliac, H pylori and other gut conditions.

Is she being treated as an adult or is she under the care of a paediatrician?

Blood tests

Has she got her actual results for B12, folate, ferritin (or other iron tests) and full blood count (FBC)?

Access to Blood test results (England)

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

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Quite a few on here also have thyroid issues.

UK GPs often only test TSH which won't give a full picture of thyroid function.

Suggest putting any thyroid results on Thyroid UK forum on HU.

Thyroid tests

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

If struggling to get recommended level of treatment may be worth talking to local MP/devolved representative.

If GP is not understanding ..... think about

1) Changing GPs

nhs.uk/common-health-questi...

2) Seeking support from PAS, B12d.org, B12 Deficiency Info websites

3) Take a supportive friend/family member to appointments

4) Keeping a daily symptoms diary that tracks changes in symptoms over time and if and when treatment is received. This could be useful evidence of improvement or deterioration in symptoms.

5) Putting queries and concerns into a brief, polite letter to GP

May be some extra info in my replies on the the thread below.

healthunlocked.com/pasoc/po...

UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

Other B12 websites

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

Units and reference ranges may vary from those in UK.

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Pandemic

UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

3) Best piece of advice I ever got was to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

I am not medically trained.

[Flinder]

Thanks Sleepybunny.