Hi, so i have positive on my diagnostic intrinsic factor test more than a decade ago. But because my b12 levels have been healthy i havent had shots since although i had oral b12 tablets. I did get much better after the first few loading shots. After a few years of that, my GP said i perhaps "recovered" and no longer need treatment. I'm getting symptoms again and the doctors insist my b12 levels need to be lower before it would mean i need shots. Reading everywhere it seems shots regularly is still a key for autoimmune pernicious anaemia and this all doesn't make sense. Might be that they rarely see this , and even more rare at my age. I'm 32 this year.
What can i do to explain that i could really use the shots? And how far should i pursue this? And can i possibly have recovered?
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Dandeli0nsroar
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Anyone with pernicious anemia will need life-long injections and will not, unfortunately, be cured. If you have a postive IFAB, then it means that antibodies attack your intrinsic factor, blocking the absorption of B12. Injections are the only solution.
It's not unheard of for some people to get by on tablets, especially at first. But eventually injections may be needed.
You might look through the paper "The Many Faces of Cobalamin (Vitamin B12) Deficiency" by Wolffenbuttel, et al: ncbi.nlm.nih.gov/pmc/articl... especially Table 1 Frequently Reported Misconceptions and Misbeliefs Regarding Vitamin B12 Deficiency.
I am not sure what the guidelines are in Singapore, but if you look through the replies on your previous thread, especially the ones from Sleepybunny, you might find additional resources to help you healthunlocked.com/pasoc/po...
Especially look through the PAS file and print them out to show your doctors. Mark or highlight the symptoms that apply to you.
Speaking as someone who went untreated and deteriorated until both my arms were numb, I had vision problems, many many other symptoms, and eventually lost my job, I would say pursue it as far as you can, until you get treatment!!! And if you can't get treatment from your doctors, look into self-injecting (if that's possible in Singapore).
Hi jade_s, Oh my gosh your symptoms sound terrible... thanks for the tips , yes i can try printing those out but i suspect a regular GP would bother to research. it's unfortunate how misinformation is affecting our healthcare I'm going to try to get referral for specialist.
I'm confused too.If you have PA or for that matter b12 deficiency from sn ansorbtion issue b12 injections regime is needed to keep off most of the symptoms.
This differs for everyone,how often you need them.
Levels of b12 mean nothing on b12 therapy.
Most need high levels of b12 to function.
Whole point of regular injections.
My daughter waa very young.
You csn get PA/ b12 deficiency at any age.
Only you know how you feel and if regular b12 shots help.
Your blood levels maybe high as on oral doses.
Which shows you are absorbing the tablets it's whether you csn then use it??
Hi Nackapan, thanks for your reply, yes it's terribly confusing. My b12 recently is still considered in normal range so my GP does not think there is a need for jab or supplement. I have been taking oral supplement and i guess the b12 levels show i can absorb? Maybe i can just do that rather than fight for jabs. The doctors never seem to think high levels of b12 is needed though i heard many people with PA say otherwise...
Your doctor is misinformed. Pernicious Anaemia is treated with lifelong B12 replacement therapy (usually by injections or in theory by high dose oral tablets). There is no cure so a recovery that would end the need for regular B12 treatments is not possible.
Thanks Technoid for the validation! That is the terribly confusing part. I went even to a gastro specialist who said i might have recovered. But it might be that he thought i recalled having my IF test wrongly. (I only recently bought the past results from that same specialist's hospital.) My GP also telling me since that IF testing positive is more than 10 years ago , it is no longer valid and the autoimmune system might have changed.
Your GP and Gastro need to inform the Pernicious Anaemia Society of their groundbreaking discovery of a cure for PA and get this published in a peer-reviewed medical journal. I look forward to a reply from the Lancet or similar journal when they make their claim. It should be published here for us all to have a good chuckle.
How these people can hold genuine medical qualifications is a great mystery to me. A professional should at a minimum be able to recognise his or her level of incompetence in an unfamiliar area.
If the IFAB test was valid 10 years ago, then you had PA then and you have PA now. Unless I missed a paper describing how at least one patient's PA was cured with time or some treatment or other. I'm aware of no such evidence or research but if either of your two brilliant medical professionals can point me to the paper I'm happy to learn something new.
If you have been diagnosed with pernicious anaemia, there is no cure.
But there is lifelong symptom management with B12 treatment. It can be difficult to work out what exactly the frequency should be, as it seems to differ for each person. Most people with PA have B12 injections, some via the NHS here in the UK, some having to self-inject to get sufficient control on symptoms to enable them to live as well as they are able, and a few seem able to control symptoms with high-dose tablets, since a small percentage of the B12 can be passively absorbed .
Other associated deficiencies may be present and need monitoring: folate, ferritin, vitamin D and unfortunately, for some, other autoimmune conditions can occur: Hashimoto's, Grave's (both autoimmune thyroid conditions), vitiligo, psoriasis - these are the most commonly experienced.
If you make a list of your symptoms daily, when they occur and the severity, this might help your doctor to help you. A frequency that pre-empts the return of symptoms is the aim, obviously, although for some, only reduction of severity has been possible. For the unlucky few, there is some permanent nerve damage to cope with. If any of your symptoms are neurological, frequent injections are necessary initially ("every other day" recommended in the medical guidance here) - at least until no more improvement can be gained, and nerve damage heals slowly. The maintenance recommendation on-going is for one injection every two months, although some find this too long a wait and nerve issues return sooner.
You have been given helpful advice and links. Tracey Witty addresses B12 deficiency problems well in a 10-minute video to a recent conference in Rotterdam: I think her new site is b12deficiencyinfo.com. This video springs to mind because I saw it recently - and because one of the speakers is there to dispel the assumption commonly held by doctors that young people don't get B12 deficiency. Maybe worth a watch.
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