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[65Sue]

Hiya l'm Sue

[Hidden]

Hello Sue, I'm Steve!

[65Sue in reply to Hidden]

Hiya Steve. How are you?

[Hidden in reply to 65Sue]

Much better since I found this forum and the FB group, went from not being able to stand up to cycling down to the surgery in the space of a week thanks to self-injecting. DIY NHS FTW!

How are you?

[65Sue]

Wow that's amazing. At a low point to be honest Doctor not listening, consultant down the hospital just giving tablets for gut issues. The list goes on, where did you get the b12 shots?

[Hidden in reply to 65Sue]

Well if the last week's anything to go by then you've found the right place, also the FB group is useful. The people here are much nicer though, of course lol Just kiddin!

See healthunlocked.com/pasoc/po...

[65Sue in reply to Hidden]

Thanks Steve

[Foggyme Administrator in reply to 65Sue]

Hi 65Sue. Hello and welcome. Just wondering if you could tell us a little more about yourself, especially before considering self-injecting with vitamin B12.

If you take any form of B12 supplements prior to appropriate blood tests and investigations, the results could be skewed and you will struggle to get a proper diagnosis...and hence treatment.

So...have you been diagnosed with B12 deficiency or pernicious anaemia? Can you say a bit about your symptoms and are you having any treatment? Do,you have any other medical conditions? Family history of PA or other autoimmune conditions?

Sounds like a lot of questions but it would help folks here to provide the best (and most appropriate) advice if we knew a little more about why you think you need B12 injections.

👍

[65Sue in reply to Foggyme]

Hi

Had a lot of trauma and stress from childhood, had ear, nose and throat problem and lots of antibiotics. Suffered with tonsillitis for years and had glandular fever whoch left me ill for years mostly no energy. Lost 7 immediate family members along wirh depression. Struggled for years with low energy. I get pins and needles in my hands, legs and feet. Density scan said l have Ostreoperinia, MRI scan said Arthritis and a Holistic Therapist reckons fibromyalgia due to the lack of sleep and body heat. Memory and concentration started back in 2010 when l was at diploma level studying Humanistic Counselling.

Not sure if this is the information you need if not please let me know.

[Foggyme Administrator in reply to 65Sue]

Hi 65Sue. Is there a reason why you suspect you have B12 deficiency or pernicious anaemia? Have you had any blood tests?

Might be worth checking to see how many of your symptoms appear on this symptom list:

pernicious-anaemia-society....

To test for B12 deficiency and PA, you can ask your GP to test:

Serum B12 levels

FBC (full blood count)

Anti-IF antibodies (test for PA - though 50% of people who have PA test negative).

Folate levels (folate deficiency can present as B12 deficiency)

Ferritin levels (again, symptoms of this are very like the symptoms of B12 deficiency)

Vitamin D (often deficient when absorption issues are present)

Also - have you been tested for diabetes and thyroid problems (these can often cause some of the symptoms you describe)?

Has your GP investigate the pins and needles in your hands, feet, and legs - and do they have an explanation? Have they suggested you see a neurologist for further investigation?

You mention seeing a consultant at the hospital who gave ‘tablets’ for gut issues. Gut issues are often associated with absorption problems (and Pernicious anaemia) which may impact on the absorption of vitamin B12...and others vitamins too...and if you have been prescribed PPI’s, then these can impede the absorption of vitamin B12.

Because of your gut issues, it would be a good idea to rule out Pernicious anaemia or other conditions that cause absorption issues (and B12 deficiency) such as, Crohn’s disease, coeliac disease, IBS...etc.

Sorry if all this sounds a bit vague but the symptoms you describe can be due to many causes, and it’s a bit difficult to understand what’s already been done 😉. So, just some ideas to get you started.

Reply here if you want to follow-up, on any of the above, or put up a new post if you need more help following doctor visits etc. (We can also help interpret blood test results if you post them in the forum, together with the reference ranges).

Hope this helps. Good luck 👍

[65Sue in reply to Foggyme]

I was told l had pernicious anemia and was having b12 injections but didn't feel any different a year down the line so l stopped having them every month. I havw taken supplements that was recommended by an holistic therapist but still no change. I was told that the supplements can interfere with test results. How do l attach my results?

[ITYFIALMCTT in reply to 65Sue]

Upload a picture of them or type them in (with their ranges) - the latter is my preference as I can't always read pictures but other people seem to manage.

[Foggyme Administrator in reply to 65Sue]

Hi 65Sue. Pernicious anaemia causes B12 deficiency...and the treatment for pernicious anaemia is B12 injections, for life.

If you were still having symptoms when having monthly injections, then it’s likely that you should have been having more frequent injections.

Your current neurological symptoms could be due to untreated or under treated B12 deficiency.

Not sure what supplements you were given by a holistic therapist, but if it was oral B12 supplements, these do not always work for people with PA because of the associated absorption problems. If the oral supplements were not working, is more likely that you need B12 injections. (B12 absorption is 1%-3% from tablets or sublinguals, and 100% from injections).

Untreated or undertreated B12 deficiency (in your case, caused by pernicious anaemia) can cause irreversible neurological damage so I would suggest that you see a medical practitioner and re-commence treatment for your pernicious anaemia.

In the UK the treatment is with B12 injections. These are given every other day until no further improvement when neurological symptoms (like yours) are present. This intensive regime of treatment often has to continue for many months...and some people find that they need to continue with frequent injections in order to keep well.

The right amount of B12 is the amount that gets and keeps you well.

Also - those with PA often have other absorption problems, so worth getting folate, ferritin, vitamin D checked too. If these are low, it can also give tsymptoms similar to B12 deficient...and make you feel very ill (as discussed above).

Also worth investigation if you have any thyroid issues since these often go hand in hand with B12 deficiency/PA.

Good luck 👍

[Sleepybunny]

Hi Sue,

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

"but didn't feel any different a year down the line so l stopped having them every month"

Pernicious Anaemia requires lifelong treatment (B12 injections in UK). Lack of treatment could put PA sufferer at risk of permanent neurological damage, including problems with spinal cord.

PAS news item about Neurological Consequences of PA.

pernicious-anaemia-society....

Did GPs/doctors explain why they were stopping your treatment?

PAS (Pernicious Anaemia Society)

Might be worth you joining PAS. Based in Wales, UK but has members from around the world.

They can offer support and info and in some cases can intervene on PAS members' behalf.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 blogs

There may be stories relevant to you on Martyn Hooper's blog about PA.

martynhooper.com/

Also an interesting blog on "B12 deficiency Info" website.

b12deficiency.info/

There is a USA B12 website called "B12 awareness".

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. I gave a copy 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 book about B12 deficiency with lots of case studies.

I am not medically trained.

[65Sue in reply to Sleepybunny]

Thank you for your time and information much appreciated. I am in the UK near Swansea.

[Sleepybunny in reply to 65Sue]

The PAS office is based in Bridgend, Wales.

PAS members can access details about PAS support groups. There are 2 in Wales....South Wales and Anglesey/North Wales.

pernicious-anaemia-society....

If GPs have stopped your B12 injections I think PAS will be able to advise. Costs £20 to join PAS for a year.

I've written a detailed response on this thread below which may have some useful info.

healthunlocked.com/pasoc/po...

There's a lot of b12 info in the pinned posts on this forum.

PAS members can print off a leaflet called "Treatment is for Life"

pernicious-anaemia-society....

"I was told l had pernicious anemia"

Might be worth getting proof of diagnosis of PA eg copies of medical records. Some people on forum found their PA diagnosis had not been recorded in their medical records which made it very difficult to get injections reinstated.

Access to medical records (Wales)

nhsdirect.wales.nhs.uk/life...

citizensadvice.org.uk/wales...

[65Sue in reply to Sleepybunny]

Thank you l will phone monday.

[Sleepybunny in reply to 65Sue]

PAS office is not open every day but you can of course leave a message on answerphone. may take a couple of days to get response.

Good luck, hope you get the treatment you need.

[65Sue in reply to Sleepybunny]

Open tomorrow so will phone for advice. Thank you

[Patjamber]

Hi Sue. I am Patsie along time sufferer this group is fantastic for information Welcome. Xxx

[Sleepybunny]

Hi again,

The blog post from Aug 31, 2017 from B12 Deficiency Info blog has some useful info on what to do if B12 injections are stopped.

b12deficiency.info/