Cobro injection of vit b12

[Christine48]

I receive 3 monthly injections of B12 in UK but as I have been struggling from week six, decided to get an injection while in Spain. I received it at a private Norwegian clinic near Marbella for 20 Euro and it was extremely effective. Can you tell me what type of B12 this Cobro have been please?

[KimberinUS]

Im cant help with the type but i am wondering if it seemed so effective because you were not as low as you are when you have to wait 3 months for an injection.

You may just need more frequent injections

[Christine48 in reply to KimberinUS]

Thanks for the reply, but as usual my doc will not let me have them more often! I always struggle the last six weeks with dizziness and a host of other symptoms not least of which is problems with my eyesight. Also have blacked out on a few occasions fracturing wrist and banging head quite badly! I catch every bug going during these last few weeks and really can’t fight the infection off. It is a huge relief now to know I can pay for an injection here half way through the 3 months cycle.

[KimberinUS in reply to Christine48]

This looks to be your first post.

I have blurry vision. I believe this is due to long standing malabsorbtion of nutrients due to h pylori.

H pylori is a root cause of a b12 deficiency. Please consider asking your doctor to test you for this even if only to rule it out.

If you have long standing h pylori you probably wont produce intrensic factor, because h pylori damages the cells in your stomach lining. If you dont have intrensic factor, b12 will not be reabsorbed during the normal recycling process our body does daily. It just drops out.

Therefore, your b12 serum blood level keeps quickly reducing lower than it needs to be, even with injections.

Best of luck

[Christine48]

Thanks KimberinUS I will have a go but he will probably poo poo it as he always does when I suggest things and then begins to wonder if I really need the Injections!!! Nice man though !

[wedgewood]

In your shoes I would self-inject into my thighs . Having control of ones own health is marvellous .But I must say that €20 .00 is a modest price to pay for good health . I get my B12 from a German online pharmacy at €55 for 100 ampoules of Hydroxocobalamin.. Needles etc are obtainable in UK .

[Christine48 in reply to wedgewood]

Thank you for that Wedgewood, but still a bit reluctant to inject myself, such a coward! But may have to go down that route soon.

[Gambit62 Administrator]

pretty sure that spain tends to use cyanocobalamin - though most of the continet used hydroxo

[Christine48 in reply to Gambit62]

Yes they do, but this was a Norwegian private clinic and it definitely was not one of those which I am very familiar with. I will find out more when I go back in three months for my next mid 3 month cycle supplement and feedback here.

My thanks for all your very helpful information and support on this marvellous forum.

[Sleepybunny]

Hi,

Dizziness would usually be considered to be a neuro symptom.

Do you have any other neuro symptoms? See lists below.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

In UK, recommended treatment for those with b12 deficiency with neuro symptoms is as follows

A B12 loading jab every other day for as long as symptoms continue to get better then jab every 2 months.

If you are getting jabs every 3 months you are probably on the standard UK treatment for B12 deficiency without neuro symptoms

6 loading jabs over 2 weeks followed by a jab every 3 months

Info on UK b12 treatment can be found in

1)BSH Cobalamin and Folate Guidelines

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

2) BNF Chapter 9 Section 1.2

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

Link about writing letters to GPs about B12 deficiency.

b12deficiency.info/b12-writ...

Point 1 is about under treatment of neuro symptoms.

Do you have a PA (Pernicious Anaemia ) diagnosis? If not, what do doctors think has caused your B12 deficiency problems?

Have you ever had an Intrinsic Factor Antibody test? This can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

stichtingb12tekort.nl/weten...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

If you suspect PA then may be worth joining and talking to PAS (Pernicious Anaemia Society). PAS can offer support and info about PA. In some cases they can intervene on behalf of PAS members.

PAS

pernicious-anaemia-society....

PAS tel no [phone] answerphone

I am not medically trained.

[Christine48]

Hi, many thanks for all this important info. I have been receiving three monthly B12 injections for almost twenty years. When diagnosed I was started with two months on B12 tablets but with no improvement, so injections started- just one then every three months, no loading doses. The reason I was tested was a blood test for extreme tiredness showed enlarged red platelets over a period of a few months. I have optic nerve atrophy which has led to glaucoma in both eyes( no family history of glaucoma). I have ulcerative colitis and severe constipation since as long as I can remember and IBS. Also get tingling in my hands and arms and very itchy skin at times. Breathlessness and dizzy ness are a problem from about five weeks after my injection. The most worrying problems are my eye problems and the dizziness and passing out ( prior to which I feel extremely unwell for a few minutes, on three occasions my husband was convinced I had died!) I have also had a mastectomy four years ago which of course is not connected.

I have never been given a reason for the deficiency. My daughter who is in her forties has Hashimotos since she was 12 yrs, and my son suffers from asthma and eczema.

I have given up battling for more frequent injections with two doctors at my practice as I come away feeling as if I am a hypochondriac. But I consider myself an intelligent active retired deputy headteacher who rarely likes to trouble our hard pressed doctors. But maybe I will have one last try using the info you have given me.

My sincere thanks.

[Sleepybunny]

Hi again,

"showed enlarged red platelets over a period of a few months."

Do you mean enlarged red blood cells (erythrocytes) rather than platelets?

If red blood cells enlarged then this would be evidence of macrocytosis which can be associated with B12 deficiency and also with Folate deficiency.

Access to Medical Records and Blood Test results (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

The most important thing I learnt from years of trying to find out what was wrong with me was to always get copies of all my blood test results. I learnt this after being told everything was normal over the phone or even face to face, then finding abnormal and borderline results on the copies.

Some GP surgeries have online access to a summary of records/results. Details should be on GP surgery website. However it is just a summary and may not have all the info wanted. Maximum cost of blood test copies is £10 in UK.

Some people on this forum get a complete set of medical records. UK maximum cost is £50. It is also possible to view medical records at GP surgery. Getting copies of hospital records is more difficult in my opinion, may involve form filling and a visit to hospital records office.

Hopefully a complete set of medical records would have evidence of whether you have been tested for PA. My personal opinion is that it is useful to know the reasons for B12 deficiency. Some causes can be temporary or some like PA require lifelong treatment.

Some people on forum have had their injections stopped at some point and then faced a battle to get them reinstated. PA is recognised in UK documents as a condition that requires lifelong treatment. PAS website has a leaflet "Treatment is for Life" available to members.

pernicious-anaemia-society....

"I have never been given a reason for the deficiency"

Have you asked the GP what he/she thought was the reason?

Family History

You mention several things that could potentially increase risk of b12 deficiency/PA eg family history of auto-immune disease, conditions that affect the gut.

What To Do Next About B12 Deficiency

b12deficiency.info/what-to-...

Links about blood tests

b12deficiency.info/b12-test...

In relation to B12 deficiency, I tend to concentrate on B12, folate, ferritin and full blood count (FBC).

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

patient.info/doctor/periphe...

labtestsonline.org.uk/tests...

Folate Deficiency

patient.info/doctor/folate-...

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society) based in Wales, UK. I gave a copy of this to my GPs.

"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.

B12 Blogs (UK)

May be stories relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info website

b12deficiency.info/blog/

"maybe I will have one last try"

My personal opinion is that it is sometimes better to put things in a letter as letters to GPs are filed with medical records so are a record of issues raised. See link in post above about writing letters to GPs (it has lots of useful info).

I also think it may be worth joining and talking to PAS before next appt.

Thyroid Disease

Some of the symptoms you describe can be found in thyroid disease. You mentioned a relative with thyroid problems.

Do you have any thyroid results? In UK, GPs sometimes only test TSH which won't give a full picture of thyroid function.

There is a very active Thyroid UK forum on HU.

Thyroid UK website

thyroiduk.org/

Coeliac Disease

Have you ever had tests for Coeliac Disease? This can lead to B12 deficiency due to effect on gut.

NICE guidelines on Coeliac Disease (2015 version) specify that anyone with unexplained B12, folate or iron deficiency should have tests for Coeliac disease.

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

Two tests are recommended in above guidelines.

1) tTG IgA

2) total IgA

In my experience, total IgA test is not always done. I think it's important as people with IgA deficiency need alternative tests for Coeliac disease.

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

I am not medically trained.

[Christine48]

Wow, thanks for all that info. I will have a read through and jot some notes before I next visit my doctor. I will also ask about the cause of my deficiency and request copies of blood tests. I have moved house and area since my initial diagnosis and am under a different medical practice now but they will have access to my records.

Interestingly, I recommended that my daughter who has Hashimotos and is under the same medical practice, ask for her vit B12 levels to be checked as she has been on thyroxine for 34 yrs, and it came back as very low so they are starting her on loading doses for two weeks then every 2/3 months, she wasn’t sure which!

Thank you so much Sleepybunny, and everyone on this forum. It is so good to have advice from people who know about and understand how important the correct treatment is

[Sleepybunny]

Hi again,

" I come away feeling as if I am a hypochondriac"

I got a diagnosis of hypochondria which I am still angry at, years later. I was scared about what was happening to my body and brain. Looking back, I was symptomatic for B12 deficiency for years and had multiple neuro symptoms. I had to be my own detective and I was the one who suggested B12 deficiency as a cause of my symptoms to virtually every specialist I saw. Only one out of several neuros I saw, suggested B12 deficiency as a possibility. After requests for trials of B12 treatment were refused, I chose to treat myself and lo and behold some of my symptoms disappeared.

"also had a mastectomy four years ago which of course is not connected"

Did you have nitrous oxide during the operation?

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

" recommended that my daughter who has Hashimotos ....ask for her vit B12 levels to be checked ....came back as very low so they are starting her on loading doses for two weeks then .....every 2/3 months"

Have they given her an IFA Intrinsic Factor Antibody test? Having an auto-immune condition (Hashimotos) increases the chances of developing another eg PA.

This flowchart outlines when PA and Antibody Negative PA can be diagnosed. Makes it clear that anyone who is symptomatic for B12 deficiency should have an IFA test.

stichtingb12tekort.nl/weten...

It seems that they have put her on the standard level of treatment (see my post above). Does she have any neuro symptoms? Quite a few on here face a real battle to get correct level of treatment if they have neuro symptoms.

"tingling in my hands and arms.... dizzy ness are a problem ....and passing out "

With neuro symptoms have you been referred to a neurologist?

One symptom that can be associated with B12 deficiency is proprioception problems (awareness of body in space) None of the several neuros I saw, as far as I remember, tested me for proprioception problems so hopefully any neuro you see will.

Two tests that can help to identify proprioception problems are...

(Very important that these tests are only carried out by a doctor in a medical setting due to dangers from loss of balance.)

1) Walking heel to toe with eyes closed. A person with proprioception problems will probably wobble and may lose balance.

2) Romberg test

NICE CKS summary below (think it's also in in BNF book Chapter 9 Section 1.2) mentions that a GP should seek advice from a haematologist for a patient with b12 deficiency with neuro symptoms.

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

Has your GP written to a haematologist or have you had an appt with a haematologist?

I would add that in my personal opinion, as with some GPs, B12 deficiency is not always as well understood as it could be by some specialist doctors so be well prepared for any specialist appt. I think it pays to do B12 homework.

Consequences of Under Treatment

Getting correct level of treatment is vital and worth fighting for. Untreated or under treated B12 deficiency can lead to further deterioration including spinal problems. There may be a risk of permanent neurological damage.

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

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

pernicious-anaemia-society.... See Page 2.

Blog post from Martyn Hooper's blog that mentions SACD

martynhooper.com/2010/09/21...

Unhappy with treatment?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medical diagnoses and medical treatment. Think they use a network of specialists across UK.

I wish you good luck with your GP.

[Christine48 in reply to Sleepybunny]

Thank you so much for all this info. I really have a lot to learn but will be far more able to put my case with confidence now. Also it is really good to know that I am able to obtain and administer my own treatment if all else fails.

[Ladystardust]

Hypochondria seems to be a common diagnosis. I went to see Dr about pains in my foot which I have now and then since before I got my pa diagnosis. I think its nerve damage in sole of my foot, every step feels like stepping on a Lego brick when its bad. Anyway, he told me he'd phone back with second opinion, which he did, told me that in his opinion foot pain came from my bumping toe in shower over three months previously and that it couldn't be pa as I have never been told I have it....despite the fact I remember the call from different Dr on 31st may 2016, treatment and subsequent drs visits to discuss progress. He told me he was concerned about my conviction I have the condition and suggested course of "tablets" to help with my worrying behaviour. He told me I should be relieved as its good news I don't have this awful condition, pointed out to him I was seriously ill pretreatment. I know self treat. He told me that was in my head and treating myself probably doing more harm than good. Even told him my husband can tell from symptoms when I need a shot, which again he dismissed. I'd never really heard of pa prior to diagnosis,other than googling it briefly when Paul Daniels died and it was linked as a contributing factor. Read about 10 seconds of wikipedia page, declared it boring and forgot about it, until I got it. This new Dr says I was told I had b12 deficiency and to treat with diet alone after loading jabs, I wasn't. I was told my diet wouldn't help as I can't process the b12 and I would need treatment for the rest of my life. I'm sure we can all agree how frightening it is to be told rest of life by a Dr, so you do sit up and take notice. Hypochondria is a lazy diagnosis and poor medical advice, the lack of knowledge and understanding about b12 is frightening.

[Christine48]

Hi , I just need to clarify my doctor never mentioned hypochondria, it was simply his attitude that I had no need to worry And probably would manage just as well without the injections. Also that none of my symptoms were anything to worry about they were very common!! I just felt I was wasting his time.