Can anyone tell me how to manage pe... - Pernicious Anaemi...

Pernicious Anaemia Society

25,853 members17,964 posts

Can anyone tell me how to manage pernicious anemia as my eyes are failing and my GP will not help.

xeena profile image
xeena

please can anyone one help or tell me what to take or do about my eyes as i have pernicious anemia and the consultant at Moorefields messaged my gp and told her to give me B12 injections but she just ignores me - i am at a loss as to what i can take - i was diagnosed in 2015 with pernicious anemia and vitamin D deficiency and stage three kidney disease and i only have one kidney as i lost the other one through doctors neglect - any help would be appreciated - wishing you all safe and well. Thankyou.

39 Replies

If Moorfields have requested the b12 is it possible to get back to them? I had thus problem with my surgery ignoring a consultant neurologists request yo up my b12 injections. I went back to the neurologist.

I got a copy of the letter to Gp.

Back to surgery asking for the correct treatment. Put it in writing.

I wasnt able to write or read unless on this small screen.

So get help

Invove PAS if you csn uses s phone. I couldn't do that on my greatest need. (Speak on a phone ) so had to get help

So difficult when so ill.

Shame on your Gp.

Hooe yoh get it sorted soon.

Consider self injections once you've had at least one at the surgery.

.

xeena profile image
xeena in reply to Nackapan

Hi there Nackapan - thank you for such a quick reply. The consultant sent my GP the message while i was with him and he also gave me a copy - so when i got back home i rang the GP and asked her if she had the message from the GP and she said yes but as she was going on holiday then it would have to wait untill she came back - which was three weeks later and the consultant also included eye drops - vitamin D - Folate- Monopost eye drops - Candesartan tablets and Folic Acid - i did get them when she came back from her holiday but she made me wait from the 17th March until the 14th of April and i have had one B12 injection when she came back. I am back at Moorfields Hospital on the 22nd of May so i will tell him about the way she has treated me and will take it from there. I have been trying to source som B12 but do not know which to try as i know it is hard to get them from abroadso i was trying to source an all in one B12 that maybe would incorporate all that i need - i have been looking on Amazon and they seem to have a good selection but i do not know what to buy - i cannot go out as i am disabled and my housing people will not let me get a motability scooter unless i leave it in the car park - where it will get stolen. I do hope that all is well for you and your eyes and that they get strong again. Thank you and keep safe - bless you.

Nackapan profile image
Nackapan in reply to xeena

If you look at a previous post . Wedgewood has given the German online suppliers and details. You can do it subcutaneously if you prefer.

J think the Go should be giving you your injections regularly as tih need other things monitoring like folate once on supplements.

Have you been told how often the b12 injections should be ?

2-3 monthly at least.

So you have time.

I wish you well

xeena profile image
xeena in reply to Nackapan

Hi there - my GP said i only need them once every three months so that is four a year - but i told her that i need as least six loading doses every other day over two weeks and she said that is not so. I told her to read the NHS guidlines regarding B12 injections and i said i will do it myself - she told me i was not allowed to - i said i can and i will if you are going to keep ignoring me and she kept contradicting me so i said for her to get her facts right and that she shoul not be a doctor - needless to say she was not very happy with me, and has not rung me since. Take care and thank you.

Nackapan profile image
Nackapan in reply to xeena

Ask your gp to read bnf guidelines. Probably best in a letter, copy in practice manager. Short snd yonthe point. You want to be treated as per consultant request . Bnf guidelines.......

6 injections over 2 weeks. A loading doses then 2-3 months

Also mention at Moorfields Hospotal.

xeena profile image
xeena in reply to Nackapan

Hi there Nackapan thank you for your help - i am at the hospital on the 22nd of this month and i will be telling my eye doctor all what has happened and how the GP has ignored what he told her to do. I do hope that you are keeping well.

xeena profile image
xeena in reply to Nackapan

Hi Nackapan - i have told my GP to look at the NHS guidlines - but she insists that she is doing it the right way - i will look at what you said in Wedgewoods message and follow what he suggests. Bless you - thank you.

Nackapan profile image
Nackapan in reply to xeena

You could ask her to read the BNF guidelines. Or google nd print off,

xeena profile image
xeena in reply to Nackapan

Hi there Nackapan - i do not have a printer and i do not knowingly use Google - i like Yahoo - i think i will buy My Gp a B12 book by Dr. Joseph Chandy all about Vitamin B12 Deficiency in Medical Practice from Amazon - escellent book i paid £6-00 pound for mine and it is a big book and quite thick or there is a hardback - he is a wonderful man and has helped thousands of people - and his amount of knowledge is unbelievable - but he does not reside in this country - such a shame - but people can phone him for help. I will read his book and see where to go from there. I will ask her to read the BNF guidlines - but i doubt that she will. Stay safe - thank you.

Nackapan profile image
Nackapan in reply to xeena

Tharsxwhatvj fud.Say you want to be treated as per Bnf guidelines snd by how the doctor at Moorfields wants yih to ve treated.

She cannot ignore both!!

J woukdnt easte your money buying her a book if she wkbt read two paragraphs on the computer in front if her

Hidden profile image
Hidden in reply to xeena

Oh my god I want to slap your doctor so hard right now. So hard. My uncle had the same issue with mobility scooter because his door so narrow (housing purposely built for the elderly who weirdly often need a wide door!!) He had copd and he wasn't going to leave a scooter outside. They gave him a top heavy wheelchair that he fell out of if he went over a bump. We have something here in Ireland called an advocacy service its for vulnerable people elderly or disabled etc. And they're really good. They fight your corner against anyone you need them to. My uncles life would have been so much happier if he had a proper scooter to have a life and I feel it would be better to have one and let it get stolen and some good insurance replace it than not have one at all. And not expensive I think it was about a fiver a month for insurance ....depending I supoose on the level maybe. But well worth a fiver a month to get out and about. I mean maybe one day out of 365 its gone and you have to get help recovering the policy to replace it but that's still 364 days of the year when you can fly about...so you're missing out on a lot to avoid something that may never happen. Not that you'd have anywhere to go at the moment! But it seems a eisk worth taking even if it got stolen once a month!

xeena profile image
xeena in reply to Hidden

Thank for your comments - i know what you mean about the mobility issue. I have a very large two bedroomed flat on the ground floor - level entry and it is disabled accomodation - there is a big window that looks on to the garden - but the housing association will not make it into a door for me so i can sit in the sun which would be good for my Vit D deficiency. I have to go through three doors to get into my flat and they are all very heavy for fire reasons - i think all new buildings have to have these doors for fire reasons and i am not allowed to have a scooter in the flat - even though it is massive - as i said before i got told to leave it in the car park if i got one and i said well it will get stolen - they said not their problem. Thankyou for your help.

Hidden profile image
Hidden in reply to xeena

That's so crap. Same with my uncles huge heavy fire doors. I'm only 40 and I found them heavy my uncle had disabled hands and copd ...no wonder he never went out.! Can you get a private conrtactor to install the door for you? Or tell a local paper or radio station and shame them! If its disability housing then its not fit for ourpose if they won't let you have a mobility aid! I mean I'd ignore the rules and wait for them to call the police on you for having a scooter in your home! Love to see then explain that to the officer. I hope you get your way. Do you have an advocacy service that could help? They helped us a lot when we had to fight officious beaurocrats. Lol!

xeena profile image
xeena in reply to Hidden

Hi there - sorry i did not comment on the Advocacy part of your message. I have had Advocacy on my case trying to sort things out for me - but she said after three months of getting nowhere that she could not do any more to help me and for me to try and find a new GP or move to another property in a different town - so no joy there - but thank you all the same. I have tried everyone i can thinnk of to get adaptions done as i cannot use the bath and they will not make it into a wet room and they will not give me any grab rails - so my grandaughter comes and gets me and takes me to her house where i can use the bath a couple of times a week and between times it is just a wash down.Take care and stay safe.

Nackapan profile image
Nackapan in reply to xeena

You csn get grab rails put in . You will just have to pay for them. As for the door to the garden dont do that you would get into alot of trouble out of pocket snd lose your

flat.

Push for automatic doors

Sallyannl profile image
Sallyannl in reply to xeena

This sort of behaviour from your gp is beyond belief.You have a consultant doing the best for you to be ignored and put on the backburner so she can go on holiday...... how long does it take to write a prescription and get a nurse to inject you.

I hope you can get this sorted out as soon as possible, and I hope your consultant throws the book at her.

That’s so really SHOCKING to read ! I’ll send you some information .

xeena profile image
xeena in reply to wedgewood

Hi there Wedgewood thankyou for the info - i will give it a try - i have heard that facebook is also a good place to get B12 - so i will give it a try as well. Would it be worth trying to find tablets that would help the B12??please - thank you for your input.

wedgewood profile image
wedgewood in reply to xeena

Some P.A. Patients say that they benefit from B12 sub-lingual lozenges , nose or mouth spray . I have tried them all religiously , and they didn’t help me one jot. Obtainable on Amazon ( well I always use Amazon smile , and choose PAS as my charity ) But undoubtedly , B12 injections are the most efficacious way to get B12 into the cells . As for the Facebook pernicious anaemia group , we only hear bad reports ,from people who come to us after fleeing the group .But why not give it a try ?

Here is some info - probably mor3 than you would like ! I hope that you ge5 the treatment you need but incase you don’t ........

Since we left the single European market on January 1st , we have had difficulties in obtaining our B12 ampoules from German online pharmacies .There is added paperwork for them , and some seem to think it’s not worth the trouble ( I don’t know if this is the only reason ) So we have had to set out and find new sources .

I can say for certain that the following pharmacies are at present shipping B12 ampoules to the U.K, but some times they run out of stock, but restock quite quickly .

bodfeld-Apotheke.de

This site is only in German, so if you don’t read German , you will need to use Google Chrome for translation or some other translation app.

apohealth.de

This site is available in English -You need to click on the American flag , top right on my iPad

Amazon.de ( German Amazon) You can sometimes get the ampoules here . It depends which online pharmacy is selling through amazon.de

——————————————————————————

Search for Rotexmedica b12 depot

These ampoules are the Hydroxocobalamin form of B12 , as used in the NHS .

You can use the Pharmeceutical reference numbers which appear on every pharmaceutical Item .

03862297 for packets of 10 + ampoules

03862305 for 10 x 10 packets i.e. 100 ampoules— Usually the cheapest way to buy them . The use -by date is at least 2 years. To be kept at a temperature of 25 Celsius or less, and in the dark.

I find it advantageous to register and use PayPal to pay . Usually takes about 4 days to arrive.

This info isn’t accurate ,as since writing this we have left the European single market ,which has made it much more difficult to ge5 the b12 ampoules from Germany . But here it is .....

Since we left the single European market on January 1st , we have had difficulties in obtaining our B12 ampoules from German online pharmacies .There is added paperwork for them , and some seem to think it’s not worth the trouble ( I don’t know if this is the only reason ) So we have had to set out and find new sources .

I can say for certain that the following pharmacies are at present shipping B12 ampoules to the U.K, but some times they run out of stock, but restock quite quickly .

bodfeld-Apotheke.de

This site is only in German, so if you don’t read German , you will need to use Google Chrome for translation or some other translation app.

apohealth.de

This site is available in English -You need to click on the American flag , top right on my iPad

Amazon.de ( German Amazon) You can sometimes get the ampoules here . It depends which online pharmacy is selling through amazon.de

——————————————————————————

Search for Rotexmedica b12 depot

These ampoules are the Hydroxocobalamin form of B12 , as used in the NHS .

You can use the Pharmeceutical reference numbers which appear on every pharmaceutical Item .

03862297 for packets of 10 + ampoules

03862305 for 10 x 10 packets i.e. 100 ampoules— Usually the cheapest way to buy them . The use -by date is at least 2 years. To be kept at a temperature of 25 Celsius or less, and in the dark.

I find it advantageous to register and use PayPal to pay . Usually takes about 4 days to arrive.

Since we left the single European market on January 1st , we have had difficulties in obtaining our B12 ampoules from German online pharmacies .There is added paperwork for them , and some seem to think it’s not worth the trouble ( I don’t know if this is the only reason ) So we have had to set out and find new sources .

I can say for certain that the following pharmacies are at present shipping B12 ampoules to the U.K, but some times they run out of stock, but restock quite quickly .

bodfeld-Apotheke.de

This site is only in German, so if you don’t read German , you will need to use Google Chrome for translation or some other translation app.

apohealth.de

This site is available in English -You need to click on the American flag , top right on my iPad

Amazon.de ( German Amazon) You can sometimes get the ampoules here . It depends which online pharmacy is selling through amazon.de

——————————————————————————

Search for Rotexmedica b12 depot

These ampoules are the Hydroxocobalamin form of B12 , as used in the NHS .

You can use the Pharmeceutical reference numbers which appear on every pharmaceutical Item .

03862297 for packets of 10 + ampoules

03862305 for 10 x 10 packets i.e. 100 ampoules— Usually the cheapest way to buy them . The use -by date is at least 2 years. To be kept at a temperature of 25 Celsius or less, and in the dark.

I find it advantageous to register and use PayPal to pay . Usually takes about 4 days to arrive.

Hidden profile image
Hidden

Shocking xeena,can you not see another gp in your practice and dump her,your consultant needs to be sending a strongly worded letter.best of luck

xeena profile image
xeena in reply to Hidden

Hi there diddlydot - no i do not want to even be at the practice as i saw a male GP when i was having tummy and bowel problems and he gave me so much medication to take that i was taken to hospital and was in there for a week. The trouble with my GP's is that they ignore all what is wrong with me as i also have COPD - thyroid problems - vitamin D deficiency - osteoarthritis and fybromyalgia - enlarged fatty liver and a tortuos aorta and i was diagnosed way back in 2013 with pernicious anemia but only one surgery treated me for it for a few weeks and then told me to leave the surgery as i was not in their catchement area - i do not diagnose my self and i only know what doctors tell me is wrong with me - but perhaps it is too much for them to be bothered with. Thank you for your message.

Hi, I just want to say that B12 deficiency is neglected problem by the GPs. This is very complex issue and most GPs don't even know how to treat it. They just put us on injections and think that it's Ok..but it's not. I have suffered a lot because of this, and decided to read lots of information about the B12 deficiency and everytime I discover something new, so not wondering why the GPs are not familiar with this. From my experience I can suggest you to buy B12 sublingual Methylcobalamin form and use it regularly on a daily basis until you feel better, the results should be visible with few weeks time. Also start some probiotics & prebiotics. As I said it's a complex issue but there is hope as well.

xeena profile image
xeena in reply to Derz

Hi there Derz - thank you for the information - i will give it a try - can i buy it from Amazon?? I too purchased a book about Viamin B12 deficiency in Clinical Practice by Dr. Joseph Chandy - very very interesting and i purchased it from Ebay for £6-00 - so i will read that as well - i will definately start some probiotics and prebiotics and hope that they help - i think i can also get B12 sunlingual Methylcobalamin on Ebay - so i will try that as well - thankyou for the help.

Derz profile image
Derz in reply to xeena

I buy my B12 methylcobalamin from Amazon, but I guess Ebay has it as well, just make sure it's genuine and dissolve under the tongue, so it goes straight into the bloodstream, take it daily until you feel better, it should not take long before you start feeling better. 👍

xeena profile image
xeena in reply to Derz

Hi there Derz - is it safe and good quality - what make do you recommend - sorry for being so cautious as i do not want to buy anything that will make me feel worse than i do already - i truly appreciate your help - thankyou so much.

Derz profile image
Derz in reply to xeena

I buy the B12 Bioactive liquid from Amazon, I do think that it is genuine and good product. It is a bit expensive but it's good product. One bottle will last for 2-3 months.

Derz profile image
Derz in reply to Derz

It's a white and burgundy coloured package.

xeena profile image
xeena in reply to Derz

Thank you Derz i will use it as per the instructions. Thank you.

xeena profile image
xeena in reply to Derz

Thank you so very very much - truly appreciated. Keep safe and well.

xeena profile image
xeena in reply to Derz

Thank you Derz - you are very kind to help me like this - god bless you.

Derz profile image
Derz in reply to xeena

I hope you feel better soon and help others with this issue. Keep me updated.

Derz profile image
Derz in reply to xeena

And always use the recommended dosage.

xeena profile image
xeena in reply to Derz

Hi there Derz - my reply is under this reply as i must have posted it wrong - my eyes are getting tired now - thank you so much for all the help you have given me.

I would report this doctor for not following the instructions from Moorfield.

Phone the Consultant who diagnlosed you to notify that your GP is unco-operative and you are very worried about your eyes.

Hi! I’m new to the chat and new with pernicious anemia. I’m also having this issue. My hematologists said it has nothing to do with PA. Doesn’t sound logical. I have MS and it has affected my cornea so years ago I consulted one of the top ophthalmologist in Arizona. I recently saw him for my yearly mapping of the cornea.

I told him I could no longer see with my glasses and I have double/blurred vision with my very strong readers. He first mapped my cornea’s. Both eye corneas are stable. He then reviewed where my vision was last year to this year and was a bit alarmed at the rapid change. He then dilated my eyes and checked the optic nerve. Looked pink and good. He checked my mild cataract and it was stable. He then took me to another machine to map the optic nerve. The optic nerves in both eyes were good.

Earlier in the appointment I had told him about my new diagnosis of PA and he was very aware. I told him I was getting nowhere with my hematologists. He was not surprised. He asked if I had consulted a Natural Path doctor. I had and was currently doing a loading dose of 2 b12 infusions per week for 5 weeks. After the five weeks the plan is to self inject 2cc 3 times per week until I see no more improvement. He said he liked the plan and continue. Said he has seen hundreds of patients loose their eye sight from PA. Said you can not be too aggressive.

Rather than a yearly appointment, he wants to map the optic nerves again in 6 months.

The rest of my answer is not about eyesight but perhaps may or may not help. I’m still trying to figure out what is going on with me.

I have a research background (business not medical so it takes me a long time) so I know how to deep dive on the internet and how to find and pattern. I discovered that certain health issues can block b12 absorption. I have a good GP that knows something is wrong and works with Natural Path doctors to best help her patients. My Natural Path doctor has been my life saver. Here is the list of health issues that can block b12 that I’ve uncovered so far:

1. Malabsorption- have done a pill camera endoscopy (waiting for results)

2. 3 different types of leukemia. One type is a possibility for me due to radiation therapy for a previous cancer. However, I’m not entertaining this yet as I don’t see a fit.

3. Diabetes. Checking this week -easy blood test-no symptoms.

4. Thyroid. Checking this week-easy blood test-no symptoms.

I found the books by the founder of this society and have been digesting all his info and so appreciate his efforts as it was what I was doing so I am able to follow him with gusto. They are excellent and I highly recommend them. Discovered from his books that I was not asking all the questions in my research. I was missing why are my cells not absorbing B12. I came up with 2 health issues :

1. Malabsorption

2. pancreatic issues. This one is possible as my father died of pancreatic cancer and I’ve been having some waxing and waning pain in the upper left quadrant that I have been associating with gastric. It would get better with b12 infusions - not injections. But lately it still there even after an infusion. I will try to get those blood tests soon.

This response was long winded but I hope some of it will help you.

Wishing you a happy day.

I

xeena profile image
xeena in reply to Runner623

Hi there - your message is very interesting - i have parathyroid and thyroid nodules that make it awkward for me to swallow and i had a private test that showed i was at stage 3 kidney disease with my one kidney as the other one was removed - but still my GP says there is nothing wrong and will not let me see a nephrologist for my one kidney - i lost the other kidney through doctors neglect - i think they are trying to get rid of me. Thankyou for the reply and i do sincerly wish you well - thank you so so much. Bless you.

Hi,

I'm sorry to read that your GP is being unhelpful.

I've assumed you're in UK.

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

PAS website has lots of useful leaflets and articles that PAS members can print out. Some pass these on to their GPs.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations to do with B12 deficiency.

Point 5 in above link is about being under treated for B12 deficiency with neurological symptoms.

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.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MP may be worth talking to if struggling to get adequate treatment.

members.parliament.uk/

Vital to get adequate treatment. Untreated or under treated B12 deficiency may lead to an increased risk of permanent neurological damage.

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....

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.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case needed in future.

Accessing Health Records (England)

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

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

patients-association.org.uk...

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 and NHS Hospital trust in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you try to track down local guidelines for your part of UK and compare them with BSH/BNF and NICE CKS links.

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 in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.

"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 article from Mayo Clinic in US

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

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

Films 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 this forum which may be worth looking at.

Pinned posts on this forum have some useful info.

Thankyou sleepy bunny for all that information - i will go through it and try contacting people to see if i can get some help - bless you - keep well and thank you.

You may also like...