Facing Despair, please give some advice

[donaleire]

Hi, I'm new to pernicious anemia, having been diagnosed only in September 2017 but I feel Ive had it for quiet some time. The doctors found my b12 levels at 81 and they gave me injections. Work had been very understanding during this time with me been sent for tests and being off sick. Initially I felt worse after the injections but then felt a bit better in November and December. However, its back with a bang this week and I feel so unwell. I'm only 27 and i feel this is ruining my life. I've a thesis to complete by April which ive already got an extension on and a full time job to keep down. I don't know how im going to manage it all if i continue to feel like this. Im always tired and can barely concentrate on my work and my thesis hasn't been touched in months. Can anyone offer any advice?

[clivealive Forum Support]

Hi donaleire Sadly it is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate levelas this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

What frequency of B12 injections are you on? If you have P.A with neurological symptoms make a list of them and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years. I was aged 39 when eventually diagnosed 13 years after gastric surgery to remove two thirds of my stomach in 1959 and I'm still "clivealive" and over 75.

I wish you well

[wedgewood]

I feel for you enormously , having been in a similar place , but not as desparate as yours because I’m an old lady , don’t have a job to keep down or a thesis to complete . You don’t mention how often you receive injections now . So many people with this condition find that the bog-standard 3 monthly or even 2 monthly is not sufficient to keep symptoms at bay . We then have to resort to self injections at sufficient intervals to keep feeling well . This the majority of GPs refuse to acknowledge . You can try asking for more regular injections , but my GP would not listrnband I was more or less accused of hypochondria ! So I had to resort to self -injection .If you feel you would like to try this , come back to us and you will get all the information you need . No amount of B12 is ever toxic ( my GP said it was !) You can try asking for more frequent injections at your surgery , but it’s unlikely that you will succeed . Yes you must make sure that you are getting enough vitamin B9 (folate in green leafy vegs peas etc or folic acid in tablet form) B9 works in conjunction with B12 . THIS IS IMPORTANT !

My extra self -injected B12 have changed my life . But you must also bear in mind that auto-immune conditions like PA seldom come alone . There may be something else going on . Very best wishes to you .

[Av42 in reply to wedgewood]

Are you meant to be on three monthly jabs now as if you haven’t had any since September would say you are long overdue your next one which is probably why you feel terrible again ! If you haven’t had one might be a good idea to book an appointment with gp asap .

[donaleire]

Thanks for the quick response. They didn't want to give me more injections until id been to the hematologist specialist so only getting more this Thursday. I couldn't wait any longer so asked for them this week. They retested me in the beginning of December and my bloods showed b12 of 212 which was far better than the 81 id had previously. I remember my folate had been low at the time but they never said anything about that. Thanks for listening its great to even vent as most people think its no big deal and im just been lazy and annoying. My anxiousness about missing work is my main worry but im a legal researcher and i just cant even pretend to do my job properly when im like this. I arrived at work the other day and found myself pressing the buttons on my car keys to open the front door of the office. I knew something was up with me again then but over the last week ive gradually become shattered again like im 90. Hopefully they wont make me wait as long again for the next injections.

Thanks again everyone, its great to even have someone to listen too, im sure youve all heard people like me complaining before, so thanks for patience of listening!

[donaleire in reply to donaleire]

ps. to previous question they say there trying to measure out how often i need them. They were going on presumption of every 3 months but dont think i can last that long. Whats also weird is i dont have a family history of PA and i meat every single day of the week as well as veg.

[Polaris in reply to donaleire]

Your B12 was extremely low !

Adequate treatment with injections and supplements from the outset is essential to avoid permanent neurological damage and many doctors fail to realise the importance of this. It might be worth writing to your GP, with the summary of the latest BMJ research document below, pointing out the information regarding frequency of injections for the neurological symptoms you have that need treatment with more frequent injections :

"every other day until no further improvement (British National Formulary)."

This is a link to the BMJ summary only but GP would probably be able to access the full document:

bmj.com/content/349/bmj.g5226

You could also quote the conclusion of the Dutch research :

"vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

Also from the book, 'Could it be B12?', by Sally Pacholok and Dr. J. Stuart, advises recruiting extra support from the PAS or a close relative/friend when battling for more frequent injections:

"Unfortunately, when it comes to B12 deficiency,....in our own practices we've seen dozens of people who were diagnosed as B12 deficient at some point in their lives but later allowed doctors to discontinue their treatment. Several paid a high price for this lack of assertiveness because they now have permanent neurological damage or dementia. Conversely, we know of patients with B12 deficiency who are alive and well today only because they, or an assertive family member insisted - sometimes in the face of significant resistance - on proper diagnosis and treatment."

Very best wishes for better treatment donaleire !

pernicious-anaemia-society....

[wedgewood]

If you have PA you can eat meat until it’s coming out of your ears ! You cannot benefit from the B12 in it because you have antibodies in your blood which destroy the Intrinsic Factor which is produced in the parietal cells of your stomach . Intrinsic Factor is essential for the separation from meat , fish , eggs and dairy products of the B12 vitamin.Thats why only injections help . I can only recommend self injection if you cannot get more regular injections . The same anti bodies can cause gastric problems because they also prevent stomach acid from being produced . Low or no stomach acid accompanies PA . (Hypochlorhydria /Achlorhydria .) I find that a probiotic like Symprove helps this condition . PA patients need injections for life .

[Gambit62 Administrator]

donelaire, there are a number of absorption problems that can cause B12 deficiency. You clearly have an absorption problem - your B12 levels would have been off the scale after the injections and have then fallen to 212 at the end of December because your kidneys have removed most of the excess. 212 is actually a very low level for someone who is being treated with injections for an absorption problem - though that doesn't necessarily mean that an individual wouldn't be okay at that level - on average people who are being treated report needing levels over 1000 if they are to feel okay. Some of us need much higher levels and others don't - which is just a way of underlining that serum B12 isn't a test that can be used to manage B12 after loading shots - you really need to go by symptoms.

The anxiety is likely to be a symptom of the B12 deficiency.

It sounds like you might be able to manage on 3 monthly shots but it may be that things start to drop off at 2 months - best thing to do is to keep a diary of the symptoms and follow when they start to return.

Glad that you did manage to get a B12 shot but would be good to try and get it properly on your records as a repeat - with the frequency you need ... and if you have neurological symptoms the BCSH guidelines recommend maintenance doses should be every 2 months.

PA may be the most common absorption problem - but the test for it is not very sensitive and gives false negatives 40-60% of the time depending on the assay method - so its a long way from ruling out PA - with the result that the guidelines actually refer to IFAB negative PA.

Other possibilities include coeliacs, crohn's, h pylori infection (which is treatable).

If you have ever had any gastric surgery that could have damaged the ileum that would lead to absorption problems as well.

[Sleepybunny]

Hi,

Some links that may be of use

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone available

PAS can offer support and info about PA. Based in UK but have members from around the world. In some cases they can intervene on members behalf. Membership costs £20 for a year.

pernicious-anaemia-society....

PAS members can access details of PAS support groups in UK. There may be one close to you. They are a chance to talk to people who understand and a good source of info.

pernicious-anaemia-society....

There are stories on Martyn Hooper's blog about PA that mention students and young people.

martynhooper.com/

There is another interesting b12 blog on B12 Deficiency Info website.

b12deficiency.info/blog/

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). Book is up to date with UK B12 guidelines.

"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 book about B12 deficiency with lots of case studies.

Are you in UK?

I'm asking because different countries have different patterns of treatment for B12 deficiency.

If you're in UK, I'd suggest reading all of the following articles/documents. If you're in Ireland, I think they tend to use UK B12 guidelines.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF Chapter 9 Section 1.2

All UK GPs will have access to BNF (British National Formulary).

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

NICE clinical knowledge summary B12 and Folate Deficiency

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

I learnt two really important things while trying to find out what was wrong with me.

1) To always get copies of blood test results. I learnt to do this after being told everything was normal then finding abnormal and borderline results on copies.

2) B12 deficiency is not as well understood as it could be by some doctors. In my opinion it pays to do some B12 homework.

Access to medical results (England)

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

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

nhs.uk/chq/Pages/2635.aspx?...

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Symptoms of b12 deficiency

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Neurological Symptoms

Do you have any neurological symptoms eg tingling, pins and needles, tremors, balance issues, memory problems, tinnitus plus others?

If yes to neuro symptoms, are you on the recommended treatment regime for b12 deficiency with neuro symptoms?

UK treatment for b12 deficiency without neuro symptoms

6 B12 loading jabs over 2 weeks then a jab every 3 months

UK treatment for B12 deficiency with neuro symptoms

A B12 loading jab every other day for as long as symptoms continue to get better ( could mean loading jabs for weeks even months then a jab every 2 months.

It's very important to get correct level of treatment as under treatment may lead to permanent neurological problems including spinal issues. If you think you are being under treated, might be worth joining and talking to PAS.

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

Unhappy with treatment (UK info)?

Link about writing letters to doctors about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of neuro symptoms

CAB NHS Complaints

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medical diagnoses and medical treatment using specialists across the UK.

If you're having trouble at work, do you have a union to support you?

I am not medically trained.