Hi I am new to this. I have intrinsic factor abs, GP is refusing B12 injections until gastro confirm PA Where can I buy these in the London?

[Aumshantii]

B12injections London

[wedgewood]

You can get B12 injections at some beauty clinics . They have to declare that they are for beauty purposes weight loss etc . I’ve no idea how much they cost , but to start you really need 6 “loading doses” over 2 weeks, then regularly enough to keep symptoms at bay -anything from daily to once every three months . But your GP will not want to give one more often than every 2months. Alternatively ——

German online pharmacies that will ship to U.K.

Brexit has caused problems for German online pharmacies who were supplying Vitamin B-12 ampoules to U.K. They now have to register with U.K. customs and collect any VAT for them and also have extra paper work,because we are no longer in the single European market. So many of those pharmacies have given up shipping to U.K. . Some , thank goodness, still do .

bodfeld-apotheke.de. A large and reliable pharmacy But they will now only accept payment from U.K. by Bank Transfer . Simple if you have mobile or online Banking .They supply all the information that you need to make a transfer . Otherwise a trip to your bank , for which the charge is £25.00 !

Courier €9.89

You might be able to pay using your Amazon account . Worth a try !

apotheke-marienbrunn.de delivery -€12.95

The drop-down list of countries on this site calls the U.K

“ Vereinigtes Königreich Grossbrittaniens und Nord Irland “ United Kingdom of Great Britain and Northern Ireland “ (In case you don’t recognise it !)

The Rotexmedica packet is displayed blank . You don’t see the usual red and white packet for some reason Maybe because Rotexmedica has been bought by a French company, Panpharma , and they expect the carton to be changed( I don’t really know) But not to worry - they send the right stuff in the usual packet .

shop.apotal.de Courier €19.95

apohealth.de Click on American flag for English

pharma24.de Courier 14.90 This pharmacy sent me 100 ampoules with a use -by date of only 12 months , where other are 2 years and more . I complained , but was told that 6 months is an acceptable use-by date, and they had sent me 12 months . So ,if you use this pharmacy , don’t order more than you would use in 1year .

Curavendi.de Courier - €19.34

Amazon.de ( German Amazon ) Obtainable in English Often have Hevert B-12 depot ampoules which are 1mg x2ml ampoules ,if they don’t have Rotexmedica 1mg x 1ml . So same strength , but double the amount of liquid .

“Depot” indicates Hydroxocobalamin, which is what the NHS uses . Amazon delivery charges are reasonable.

——————————————————————————

Search for Rotexmedica B12 depot . ( Hydroxocobalamin) These ampoules are 1mgx1ml

Ref. number to get straight to packs of 10+ -03862297

For packs of 100 ampoules (10 x 10) 03862305

This is correct for June 2021 . Can be out of stock sometimes , but back in a day or two .

If a site is only in German , use a translation app , or Google Chrome .

Bear in mind that some sites refer to the U.K. as

Vereinigtes Königreich Grossbritannien und Nord Ireland ( United Kingdom of Great Britain and Northern Ireland) on the drop-down country identification list

Also plain” Grossbritannien “ . The sites named above do all ship to U.K.

Needles , syringes ,swabs and yellow sharps boxes for disposal of spent needles obtainable from

Medisave.co.uk

exchangesupplies.org

Have needles and syringes .

Intra-muscular injection needles 25G x 1 inch

Sub-cutaneous injection needles 30G x 1/2 inch

Withdrawing needles 21G x 1 1/2 inch

Blunt-ended needles with a filter are also obtainable for withdrawing .

[Aumshantii in reply to wedgewood]

Wow! Thank you for all the information. The GP did give me 5 but refused to prescribed anymore until confirmed PA by specialist. I went to a clinic for the 6th cost me £50, I can't afford that regularly. I have anti parietal antibodies too but because my total B12 and folate are in range ( albeit at the lower end)he says he won't give me any more. I copied all the Nice and other information into him, still no. I am so stressed as have so many neuro symptoms. I ordered some from the far side of the world but they haven't arrived. I want to do injections on alternate days until there is no more improvement then see how I go. I am so upset with the whole situation. If I have had to stop the alternate days (because GP wont prescribe more) then resume when I manage to order - will it affect me much? Which other supplements should I buy? If you could give me these in priority order as funds are limited, I would be most grateful.

[wedgewood in reply to Aumshantii]

If I were you I would buy some packets ( 10 ampoules in each packet ) from BODFELD , as long as you have mobile / internet banking . Today a Packet of 10 costs €5.98. , i would order more than 1 packet as the courier charge is the same no matter how many you order .(€9.98 ) The use by date is usually about 2 years .. Use the number 03862297 to go straight to the Rotexmedica B12 depot ( Hydroxocobalamin) Will take a few days to arrive. The packets of 100 are out of stock

Marienbrunn.de charges 9.95 for a packet of 10. ( 03862297) Shipping costs €12.95

also good to supplement daily with folic acid 400 mcg . ( Amazon )

Sorry haven’t got the time now to look up any more .

Best wishes .

[Aumshantii in reply to wedgewood]

I'm very grateful to you wedgewood, thank you so much for the time you have given me

[Gambit62 Administrator]

Aumshantii - I am so sorry that your GP is being so difficult. Have you tried writing to the practice administrator demanding to be treated in accordance with the BNF and NICE and BCSH guidelines for cobalamin and folate disorders - both of which state the importance of a more aggressive treatment in cases which have neurological involvement. The BCSH guidelines also make it clear that this should NOT be dependent on serum B12 levels being out of range.

[Aumshantii in reply to Gambit62]

Gambit 62 thank you for your time. I so have! Copied numerous times, numerous pages that tell them exactly what they should be doing but its almost like they feel like I am challenging their knowledge/expertise. Asked them B12 is not dangerous so whats the harm. They have definitely dug their heels in.

[Gambit62 Administrator in reply to Aumshantii]

Aumshantii - just to make sure that I have been clear, you have written to both your GP and the practice adminsitrator, either directly or including in correspondence with the GP. Is that correct?

[Aumshantii in reply to Gambit62]

Seems the Practice Manager is leaving, I have never got a call back or reply from her. I put everything on the AskmyGP which we have to use to contact the surgery for everything, appointments, prescriptions, test results and complaints etc. I think it all goes to the GP that made the decision, he owns the practice and pays the wages of all the staff. I contacted NHS England, they told me that if I have raised a complaint with the practice that I cannot use their complaint processes and that the next step would be the Parliamentary Health Ombudsman if I'm not satisfied but I do have to wait out their practice's complaints procedure time which is 14 days.

[Gambit62 Administrator in reply to Aumshantii]

Sorry to hear about the hassle but hope that you do manage to follow things through and get the treatment that you really need.

[Aumshantii in reply to Gambit62]

Thank you, Its just so heart warming to have this support. been feeling so alone, Ive been hitting my head against a wall.

[Aumshantii]

Hi Nackapan, I have notification and can see your reply in my emails but its not in this chat. You asked about getting a 2nd opinion.I asked for a 2nd opinion, the 2nd GP asked me to wait in her room whilst she spoke to the first GP for 15 minutes. When she came to me, she did not ask me my symptoms, merely referred to B12 and folate figures said she was sure the gastro referral would come back as not PA and refused point blank to give me even 1 more B12 vial. I offered the Nice guidelines that I had bought with me, she did not even glance at them just told me ' I know the Nice guidelines!' I left in tears, I have complained in writing to the surgery and been told both GPs are now on leave until Friday. I did receive the first injection at surgery and did 4 myself -I have had to self administer before during chemo so the nurse was fine about me doing them myself, 6th was at a beauty clinic. The last note on my medical record, prior to the blood tests, was regarding my suicidal thoughts.

[Sleepybunny]

Hi,

Have you considered joining and talking to PAS who can offer support and pass on useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful leaflets which some PAS members pass to their GPs.

pernicious-anaemia-society....

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 but some UK doctors may not be aware that Antibody Negative PA is a possibility.

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

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

Gastrin test may also be helpful in diagnosing PA.

labtestsonline.org.uk/tests...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Link has letter templates people can base own letters to GP on.

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.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but keep them short.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MP

If you're struggling to get adequate treatment may be worth talking to your MP.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

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 deficiency and Folate deficiency

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

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

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).

BNF treatment info in this book is out of date. See BNF hydroxycobalamin link.

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

Very comprehensive with lots of case studies.

Films and Videos about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

I am not medically trained.

I have written other detailed replies on the forum which may be worth searching for.

[Aumshantii in reply to Sleepybunny]

Hi Sleepybunny, its odd, when I joined this forum I saw the PAS logo come up and various links seemed to take me into it. I thought that the groups were all linked so that, if you joined you have access to them all. If its a separate organisation, I will definitely join it separately. Lord knows I need help. I did get all of the stuff I sent to the GP from there .....or I thought I did.

[Sleepybunny in reply to Aumshantii]

Hi,

PAS set up this forum but PAS is separate.

pernicious-anaemia-society....

Admins will be able to explain more...

I suggest you speak to PAS before you next speak to GP.

[Aumshantii in reply to Sleepybunny]

Thanks Sleepybunny, I definitely will do. I have got it right haven't I , in that intrinsic factor antibodies alone are enough for PA if I have anti parietal too it deffo is a PA diagnosis, despite normal B12 and. folate and Hb?

[waveylines]

You have all my sympathy. I too was told I would have to wait until seen by s neurologist. That was a 6month wait. I could barely walk. I was told at the time the local CCG demanded this. GP looked very relieved when I said I wasn't prepared to wait & bought my own. That was three years ago. Things have worsened. The NHS is crumbling So to be honest fight the practise but get ure own b12 ampoules in the meantime. I cant recommend a place as my latest order is at customs. So make sure your order is under £135 to avoid this.

[ClareP5]

What you want to do is correct - self inject every other day. Good luck with supplies, get your needles and wipes ordered too. I did get a friend in EU to buy mine and send them gift wrapped! Best thing I ever did was ignore the GP🙈

[FlipperTD]

Scientist, not medic.

I really don't know how Gastro will be able to tell that you don't have PA.

You tsay that you have IF antibodies. These are as close to diagnostic proof of PA as anything now we don't have the Schilling tests. Parietal Cell Abs are there too, although they're not of diagnostic significance.

Your IFAbs are all that they should need, and as always, we should treat the patient, not the numbers.

(Even in the presence of IFAbs, high dose oral B12 can help some patients, as an alternative to injections, but I'm not in a position to advise you on this.)

Good luck. I generally say 'listen to your doctor' but it sometimes seems that's not the best advice!

[Aumshantii in reply to FlipperTD]

Thank you all so much for the support, I have joined PAS now, my first call tomorrow will be to them. I ordered B12 from New Zealand I think it was, they said 14 days to deliver but its not yet in the country , I will place an order to the German company thats recommended for back up- I cannot believe the price difference. What upsets me is that people who are sick are having to fight for a medication that is cheap and harmless even if taken in excess. What are they afraid of? I get NHS funding is short but that's not an excuse to delay treatment, it will cost them more if neurological changes become irreversible. When I first made the connection between PA and my symptoms it was such a relief to know what the problem is and that there was a solution, little did I know about the impending battle. I'm not going to wait, I suffered a long time. I have children who may have the same deficiency as auto immunity runs rife through our family. I don't want them to have to go through what I have had to. My mum had hashis and a lot of metal health issues diagnosed, she had the range of treatment pills to ECT, she committed suicide at around my age and I am devestated to think this may have been due to PA left undiagnosed and untreated. I refuse to wait, if you don't have your health you have nothing.

[Sleepybunny]

Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

[Aumshantii in reply to Sleepybunny]

Thank you SLeepybunny, I'm set for the week with my B12 reading list. Can anyone recommend a good hospital in London that deals with PA ? I read something about St Thomas's or is it they just do special tests connected to B12?

[Aumshantii]

Hi Sleepybunny, just reading one of the links re intrinsic factor antibodies mentions under things to know - that people with hashis often have these but may not have PA. Could this be why GP is edgy? I have hashimotos, and my methylmalonic acid, total B12, folate and hb was in range but positive for intrinsic factor abs and apc.

[Sleepybunny]

Having one auto immune condition already will increase the chances of developing further auto immune conditions.

PA and Coeliac disease are two auto immune conditions that can lead to B12 deficiency.

Have a look in the section " Is there anything else I should know?" in link below.

labtestsonline.org/tests/in...

Do you have any blood relatives who have been diagnosed with PA?

PA can run in families.

Article about MMA

stichtingb12tekort.nl/engli...

Have you ever had your gastrin levels checked?

UK guidelines on B12 deficiency indicate that a patient with the symptoms of B12 deficiency should be treated even if serum B12 levels are within range.

Do you think your symptoms suggest B12 deficiency?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

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

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....

Blog post from Martyn Hooper's blog, mentions SACD

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

Blood tests that can help to diagnose B12 deficiency

Blood tests

b12deficiency.info/b12-test...

I am very sorry to read about your mum...B12 deficiency can have a massive effect on mental health.

Some details in links below may be upsetting.

B12 deficiency and Mental Health

b12deficiency.info/mental-h...

"Neuropsychiatric symptoms of B12 deficiency: not just in the elderly and often without anaemia"

stichtingb12tekort.nl/engli...

Blog post about PA and psychiatric symptoms

martynhooper.com/2017/01/22...

PAS contact details

pernicious-anaemia-society....

[Aumshantii]

Thanks Sleepybunny, 2 coeliacs in family, I suspected that I was too and was sent for allergy testing where they found the anti parietal cells that led to the IFab test (on my request) GP was googling the test as I asked about it and thankfully agreed to it- the only GP that listens at the surgery but she only works Fridays. I have not been tested for gastrin. The notes just prior to the PA blood tests in my medical record were about my suicidal ideation, I was in despair and thought that I would go the same way as my mum. It was in the labtestonline link that it mentioned,

'Some people with autoimmune diseases such as type 1 diabetes, Hashimoto thyroiditis, Addison disease or Graves disease may have IF antibodies without having pernicious anemia. '

Made me think I have the IF abs but, maybe thats why GP thinks I may not be PA.

I definitely have symptoms, trouble is, many of the B12 deficiency symptoms overlap with Hashi's. No one in my family has been diagnosed with PA, I thought I had when GP gave me 5 vials and I told my family to get checked, but I reckon it will be even harder or them to do now with the NHS bottle shortages. Texts from surgery state blood tests are only for urgent tests currently.

[waveylines]

Heres a good book by Dr Chandy which you can either buy or download for free from B12d.org

b12d.org/book

[Aumshantii]

Thanks Waveylines, I ordered the Chandy book. Have read some pages and I think the B12 injections will become a family affair as I have 2 vegetarian daughters and a son who was tested for Addisons disease because of his fainting spells- they said he didn't have Addisons thankfully.

Not really sure about which needles and syringes to buy though, are the withdrawing needles the syringes that pull the liquid up?

I ordered the green needles 21G 1.5" and BD Discardit 2ml Concentric Tip Syringe, 2 piece x 100 and some wipes from Medisave. I already have the sharps bin. Will that do the job? Thank you

[Thorpe1984]

I have had the exact same problem, tested positive for instrinsic factor antibodies but b12 was within range at 188, I managed to persuade my gp to give me some b12 injections as I have so many neurological symptoms. I have just changed my GP surgery, he wanted to re test me for instrinsic factor antibodies and test my b12! I have refused these tests and he’s referring me to a gastroenterologist but I feel the same like I’m just banging my head against a brick wall. It’s so upsetting. Have you had any joy yet? X

[Aumshantii in reply to Thorpe1984]

Hi Thorpe, I have in fact! It was a long battle that isn't really over yet. I contacted the gastro team via PALS begging them to advise my GP to prescribe B12 whilst I waited the gastro appointment due in November. The gastro replied after 2 weeks said I didn't have PA , my IFAB result was only weekly positive and as I had no other symptoms that both ifab and b12 tests should be repeated and BTW, he cancelled the appointment as he said I didn't need it. He This was all wrong information so I wrote back correcting the facts and included proofs MCV blood result showing macrocytosis, A and E reports of attendance with various symptoms, of PA , history of unexplained anaemia and other symptoms, anxiety, depression suicidal thoughts. He didn't reply, so contacted PALS who turned my query into a complaint, a week later he replied said I should be having B12 whilst he looks into it again and confers with haematologist etc. I expect he will find reason to refute PA again but I'm not dwelling on it. Keep the Ifab blood results safe, it should not be repeated unnecessary. Good luck! Ridiculous that even a positive ifab is not recognised as PA.