B12 injections

[Blondie65]

My B12 injections were stopped by my GP last year and I now feel dreadful. I'm tired all the time, I have muscle pains, my memory is so bad I think my work contract will not be re newed. Has anyone else had this? and have they been able to get them re instated? I'm going back to the doctors on Monday to see what they will do

[wedgewood]

I am really sorry that you are going through such a bad time . Did your doctor give the reasons for stopping the injections ? You will need scientific evidence that you don't need them . Also, have you been diagnosed as having PA ? PA patients have to have life long injections . If this is the case , , and you are a member of the PAS , you can get help . Martin Hooper , our Chairman will intervene and get your injections re-established . He has helped many people to get their injections re-instated . He knows the best way to do this .

Also , take comfort in the knowledge that you can self-inject ( I do this, as my GP will only let me have one injection every 3 months , which leaves me in a very bad way.) Self - injecting is cheap-- about £1.00 if you buy everything in bulk . Should it come to this you can get all the information here .So don't despair .In the meantime you could use sub- lingual B12 lozenges (Amazon ) its possible to absorb a very small amount of B12,through them if you have PA. The only trouble is that it will send your B12 blood serum levels sky high should you have a blood test , which will be interpreted as you having adequate B12.

So you can get help here . Best wishes to you .

[Blondie65 in reply to wedgewood]

The doctor said that it was no longer required and that new guidelines stated I didn't need it. My father had injections every 12 weeks and he also had altzimers. I've been worrying that I have that as my memory is so bad. I'm going to speak with the doctor on Monday. My dentist also said that the appearance of my tongue shows the problem so hopefully that will help. If not I will inject myself. I didn't realise this was so serious. Thank you for your reply.

[Gambit62 Administrator in reply to Blondie65]

Assuming you are in the UK then the NICE aond BCSH guidelines haven't changed in the last year - certainly haven't withdrawn the recommendation that treatment for a B12 abssorption problem is with IM injections.

If you have a b12 absorption problem then you won't be able to store B12 in your liver any more so unless your doctor is treating you in some other way you will just become deficient again over time. The mechanism that releases stored B12 depends on the ileum which is where absorption problems occur

When your injections were removed did they give you any other advice on how to ensure that your B12 levels remained adequate? There has been some publicity - think the last big splurge was a year ago - about very high dose oral being effective for people - and it is effective for many people if they take doses over 1000mcg a day - but it doesn't work for all and it isn't currently a licensed treatment in the UK.

It works because about 1% of B12 is absorbed outside the ileum. 1000mcg is about 400x RDA - so that should mean up to 4x RDA is being absorbed - this isn't going to be enough to rectify a deficiency but it could be enough to stop it recurring.

Suggest

- join PAS if not already a member

pernicious-anaemia-society....

- contact them with your story - although PAS sponsor this forum the forum is the people that contribute to it.

- go back to your doctor with copies of BCSH and NICE guidelines on treatment and ask if they would share with you the documents they have advising them that the treatment protocols have changed.

you can find details of the guidelines in the pinned posts

- when you have this information - share it with the PAS - as they are likely to want to take it up with whoever issued it.

You may also find this blog useful

martynhooper.com/2016/09/23...

[wedgewood in reply to Blondie65]

Yes, but are you diagnosed as having Pernicious Anaemia ?( you don't need to have anaemia for the diagnosis) If so, your doctor is obliged to give you injections . Ask to see the " Guidelines " And IF he does show you them , get back here and tell us exactly what they state. It's a big IF as I don't believe that they exist . It is significant that your dentist has commented on your tongue .

Doctors still believe that they can be "dictators" . and we will not allow that . Your health is paramount . Doctors are not obliged to swear the Hippocratic oath anymore . Shame !

[Blondie65 in reply to wedgewood]

I was diagnosed, I was told my body does not absorb B12 and it was nothing to do with my diet. I had the injections for 18 months, then when I booked an injection my doctor told me to have another blood test as I may not require the injections but tablets instead. When he looked at the results he told me I was border line and therefore did not need the injections or tablets. To be honest I haven't felt right since then but as I'm going through the menopause everything is to do with that!

[Gambit62 Administrator in reply to Blondie65]

Are you being given tablets? if so what strength?

At present very high dose oral (>1000mcg) are not licenced for use in the UK - and if you are being given 50mcg cyanocobalamin you are being mistreated anyway if you have an absorption problem.

Ask your GP for the details of the blood test he did. If it was IFA then the test is notoriously unreliable and prone to false negatives so cannot be used to prove that you do not have PA ... and in any case PA is only one absorption problem - it may be the most common but it isn't the only one and the treatment recommended is for people with absorption problems.

refer back to my earlier response

[deniseinmilden]

NHS treatment of people with B12 deficiency is so wrong!

I, and many others, have resorted to buying our own injections and supporting supplements and treating ourselves, despite proving to our GPs that we should be treated. If all else fails that is a safe option. Please do not let your body be damaged by the deficiency: the sooner you get the correct treatment, the greater your chance of feeling well again.

Good luck!

[Sleepybunny]

Hi,

Link to BCSH Cobalamin and Folate Guidelines.

onlinelibrary.wiley.com/doi...

I take a copy of the guidelines above to appts plus a copy of the summary fbirder compiled of mainly UK B12 documents. Link to his summary in third pinned post (its the last link in the list) and also on his profile page.

I gave a copy of the BCSH Cobalamin and folate guidelines and a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to my GPs.

If you are unsure whether or not you have been diagnosed with PA can you find out if you have ever had an IFA test?

The Intrinsic Factor Antibody test can help to diagnose PA but it is not always reliable and it is possible to still have PA even if IFA results are negative, the BCSH Cobalamin and Folate Guidelines mention Antibody Negative PA. There are some useful flowcharts in the BCSH document about three quarters through it. One of them outlines the recommended process UK doctors should follow with someone who is symptomatic for B12 deficiency. About a quarter of the way through document is info about UK b12 treatment.

Do you get copies of all your blood test results? I learnt to after being told everything was normal then finding abnormal results on my copies. In relation to B12, I look particularly at b12, ferritin, folate and full blood count.

"I didn't realise this was so serious. "

Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

Link about writing to GPs if unhappy with treatment.

Person who runs website can be contacted by e-mail. Does not seem to mention BCSH Cobalamin and Folate Guidelines which I do mention if I write to doctors about b12.

b12deficiency.info/b12-writ...

HDA patient care trust

UK charity that can arrange free second opinions on medical diagnosis and treatment.

hdapatientcaretrust.com/

HDA pct tel no 0207 935 8366

"My father had injections every 12 weeks and he also had altzimers"

Do you know why your father had B12 injections every 12 weeks? Was he diagnosed with PA? Do you have other blood relatives with PA? PA can run in families. Next link has info about PA in families. See section on Genetics, perhaps GP may be interested?

pernicious-anaemia-society....

I am not a medic just a person who has struggled to get a diagnosis.

There is a section on PAS website for medical professionals pernicious-anaemia-society....

[Blondie65]

When my blood tests results come back what should I be looking for?

[Foggyme Administrator in reply to Blondie65]

Hi Blondie. Get a copy of your blood results from your GP and post the results in a new post, making sure to include the reference ranges. People will then be able to help you to interpret your results. gP's often say results are normal when they are not. For many people, bumping along at the bottom of a reference (or near the top) range is not good enough - though GP's don't often recognise that.

When you say your were diagnosed, did your mean with pernicious anaemia or B12 deficiency. If PA, then your injections should not have been stopped.

When you go for your blood tests, ask your GP to also test your folate levels. B12 and folate work together so if you do not have enough folate your body will not be able to use the B12 properly.

With the return of your symptoms, your GP should start testing again...FBC, Anti-IF antibodies, folate and ferritin (as a minimum). MMA and homocysteine blood test would be good to get but many GP's have not heard of these 😖.

And if they did not discover the reason for your deficiency when you were originally diagnosed, they should aim to do so now, by investigating until the cause has been found (though this is not always possible and the main priority should be to treat your deficiency, if you are found to have one).

If you have neurological symptoms, then it is important that you are treated immediately with B12 injections (if you are not sure what these are, there's a symptoms checklist in the PAS pinned posts when you log on to this page).

Might be a good idea to highlight any symptoms that you have and take this along to show your GP. An added bonus would be that this has the PAS logo on it so,your GP will not be able to dismiss it as Internet 'nonsense'.

Gp's are very ill-informed about B12 deficiency so if you have any problems getting your GP to take you seriously and treat you, if necessary, please post again and people here will be able to advise and help you to deal with this.

In the meantime, reading the PAS pinned posts will give you lots of useful information so that you can understand and the diagnostic process, together with treatment your GP should offer you.

So...post your results and people will help you interpret them.

Good luck with your GP 😀

[Sleepybunny]

Hi,

Links about blood tests that may be useful

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

labtestsonline.org.uk/under...

There have been people on this forum who when they accessed their medical records found out that they had been diagnosed with PA in the past. Can be interesting to see what has been written by GPs in the past. Easier to get records from GP surgery, more difficult in my opinion to get records from hospitals.

Access to medical records

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

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

[Marcieb]

Many of us have had this problem in some form. I agree, talk to Martyn, the man deserves a medal for so much service to all the PA/B12 deficient people he helps. Change your doctor if he will not reinstate immediately, and throw as much information you can get from this site at him or another doctor until you are treated properly. This is not a silly little illness which so many are whining about, it is very serious and you must have treatment. Not the 12 weeks, you will probably need much more frequent. I, like so many apparently, have just started self injecting, sc, in the tummy. I have 3 injections a week, the surgery could not cope with fitting in the appointments. Keep fighting, you are in the right, just so few doctors know any tiny thing about this and do not have time to learn right now. My own doctor, having been bashed in to the floor by links, letters, copies, me in person has really been trying so hard to get my problems sorted - a year ago, no way anywhere near such knowledge he seems to be picking up. Our Nurse says she has no idea in our surgery but knows more and more are being diagnosed. We know this is the whole country/uk, even in America is huge. I was invited to do a BBC South TV piece in September and hope that could have made a few people jump and look. They have looked extremely well in to this, and I hope perhaps some further moves could be made to bring this up more. My memory is now symptomatic of Dementia, it is horrid. I see a Neurologist in a few days who first was not keen on seeing me, but hope will agree to keep on with the injections in number until these symptoms no longer leave me in this state. I must drop Martyn (Our Hero) a line in case he can have a word with him first, he may be bringing students as is from University Hospital. Be right old kettle of fish if he is not up to date and students learning that B12 deficiency is no biggie. No worries all chumlets reading this, I will put him right in no uncertain time, new students must go into their "jobs" with full knowledge as this is now so well known. When you think that it was a death sentence in the 1900's not till 1964 the drug for injections came along. Yet in 2016 thousand upon thousands of us are having such trouble with the right treatment. Stick with this site, everyone looks after each other. I wanted to know anyone injecting in to their stomach and a ton of answers flew in, U Tube sites mentioned to watch. Big family here, we look after our own so ask away, don't be afraid to ask what you think might be a mere small question. My Consultant for my Arthritis, tells me it is now referred to not so much as PA but B12 deficiency, but I still say it all. Chin up, keep on and on until someone listens. Good luck and take care, Marcelle B