Hi I'm new here and don't normally join or post to websites but so fed up of being strung along by doctors who constantly tell me everything's normal when I feel the opposite so any advice welcomed. I went to Dr last December after trying to cope on my own for about a year feeling far more tired and run down than I should I'm 31 not suffering anxiety or depression have a lovely life that is busy but not more than anyone else I know and yet I have waves of exhaustion, palpitations, feel like I need to draw big breaths to get enough air, losing hair, and getting sensations in my wrists hands and ankles like carpel tunnel also put on about a stone in weight over a year whilst maintaining same diet and (lack of) exercise.
Had fbc pretty much asked if I was depressed otherwise man up and get on with it. Felt really upset and like there was no point going back so left it until March when I just knew I couldn't live like this forever and saw another Dr turns out my b12 was low on prev blood test - repeated borderline low so told take supplements and retest. Borderline low pushed a bit for some treatment and prescribed pyridoxine retested borderline low - by this point I'm getting really fed up of being fobbed off with tests and waiting it's not getting better had a good moan and Dr is consulting blood specialist in the meantime Ive had copies of my last 2 blood tests printed and b12 in august was 171 in September after pyridoxine it's only gone up to 185 and both say in light of clinical state film examination and intrinsic factor abs!!!! Why has this been ignored - after about 5 minutes on Google I knew my b12 was not borderline anything it's below range as the lab has clearly stated at least twice ahh! Feel helpless and no idea what to do next sorry for such a long post and thanks to anyone who can be bothered to read and reply
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Clare184
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I posted a very lengthy reply on another thread recently that may be of use to you (link below). If you are in another country some info may not be applicable.
Thanks again Sleepybunny really helpful links. I have had good look through everything and will be printing some off to give to my doctor if he doesn't agree to start injections next week - I have a phone appointment on Tuesday so fingers crossed (he is on holiday at the moment and the dr covering for him has said I don't need any treatment feel like I'm going round in circles!)
not sure why pyridoxine (B6) is being used to treat a B12 deficiency ... and as high doses of B6 over significant periods of time have been linked to neurological problems even less sure.
Not sure where you are based - US? Treatment regimes and the type of B12 used to treat is very different in different parts of the world. Most of the users of this site are UK based so tends to be around hydroxocobalamin and BCSH guidelines.
Unfortunately the treatment you are receiving is far from unusual. B12 is only a vitamin and is scarcely covered in most medical syllabuses so doctors tend to be unaware of the range of symptoms a deficiency causes and guidelines are often misleadingly focused on blood work and macrocytosis, leaving an impression that it is just about what is happening in your blood. Basically most medics - including haemotologists, neurologists, psychiatrists as well as GPs are hopelessly unaware and harbour misconceptions that really aren't helping you.
The usual cause for a B12 deficiency is an absorption problem. The usual treatment is injections as these are the most efficient way of getting B12 in to your body. There are other possiblities but in terms of research on efficacy the focus has been almost entirely on injections to the exclusion of anything else ...
Suggest that you put together a list of all symptoms, highlight the warnings in the blood tests, and look through the pinned posts to the right (think they may be down the bottom if you are using a mobile) and dig out information on standards from there - although they will relate to the UK they might point your doctor in the right direction.
You could also try pointing doctor at this site as a good source of information on what PA is and what B12 deficiency is.
Thanks for the replies and info I'll have a good look through everything. I'm in the UK seems ridiculous that our gps use such low range for b12 compared to other countries and wish I'd done more research early on and saved myself months of wasted time. From what I've read I'm pretty sure I have pa just need to get gp to agree.
Gambit I thought it was odd I was being given b6 to fix b12 issues but read somewhere that b6 helps with absorbtion of b12? So annoyed yesterday when I got bloods printed and found out they'd been told to check intrinsic factor twice already might be even more but I only asked for the last two tests to be printed.
Some of my other results are only just over the minimum anyone know if I should be worried about these too?
It is very difficult to get correct treatment for B12 deficiency/Pernicious Anaemia in U.K. Doctors are very ignorant /disinterested about it . Whether or not you have PA , in the first instant you need some B12 injections NOW asap. I've just returned from Germany where you get treatment when B12 serum readings fall below 500 whatevers ! I had to resort to consulting a private doctor to get a diagnosis of PA . by which time having been messed around by my GP I was very exhausted and had numb feet ---allowed 1 injection every 3 months . Not sufficient to keep symptoms at bay . Laughed out of the surgery when I asked for more . Have had to resort to self injection every week . Take a B vitamin complex also and eat healthily . Result ----feeling well again ! I hope you will be able to get the correct treatment very soon . You can always come to this site for help . There are some great people who will help you -Very best wishes to you .
Thanks for the reply it is so reassuring just to talk to people who don't think I'm just being dramatic! I had a call from my doctor a couple of weeks ago and he said I might need B12 injections but he wanted to get advice from blood specialist first. Just got info back and they have said no action needed my doctor is on holiday until next week so wont get any further til Tuesday when I have a phone appointment so just hoping that he is one of the few who seem to know about this condition and will actually help me.
Glad you are feeling well now but disgraceful that you are having to self inject don't know why doctors wont listen to patients.
There is no financial reward for diagnosing PA unlike other ailments . If you are deficient for a very long period you will get a serious mental problem . Diagnosing mental health problems brings in cash ! Sorry I've become so cynical in the last 2 years since I got PA !
Also , the large influential pharmaceutical industry which sometimes provides nurses for NHS practices , does not manufacture B12 ampoules , because there is no big money in it .
Hi Clare181, I can't really offer advice, as I'm having similar problems getting help from my GP. I have received a lot of information from people on this site and support too. I hope you get the treatment you need soon.
Thanks, I feel so much better informed after a few hours here! It's so nice to have others who know what we're going through - hope you get some positive results soon
Your B12 is very low Clare and it is deplorable that this has not been treated before now, as there is a short window of opportunity before any neurological symptoms become permanent.
I'm wondering whether you have also been tested for Hashimoto's autoimmune thyroid disease as this is very often linked with B12 def, and symptoms (esp. carpel tunnel, weight gain, fatigue) often overlap?
Here are further useful links which might help galvanise your doctor into taking urgent action to inject as per BNF guidelines for neurological symptoms until no further improvement. If not, you may have to take matters into your own hands (literally) and self inject, which many on the site will be able to help with.
The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately. We will pay more attention to this aspect in a following survey.
More than a year after the start of the treatment 25.7 % still suffer from serious to very serious fatigue. About 15 % still experience nerve pain and/or muscle pain and weakness.
Other symptoms that remain troublesome are concentration problems, memory problems, word finding problems and intestinal complaints. 60 % of the patients feel that they are receiving sufficient treatment."
Wow scary stuff ive read quite a few articles that people have signposted me to and the evidence for changing the normal range closer to japan and some other european countries is amazing.
I think i had thyroid function tested in December but i'll double check with the doctor.
It's frightening that this happens so often. It happened to me. I had blood tests over a year ago and was told at the time that everything was normal. After becoming very unwell this year, I was told that my b12 was low last year (in the 140's). Repeat blood tests showed levels were still low (and I'm also low in vitamin D and folate).
I am now getting treatment, but I think that I have neurological symptoms as a result of the delay. Scary thing is that my dr is still trying to push a diagnosis of depression and anxiety onto me.
I really hope you get the treatment you need and start to feel better soon.
It really is scary how many people seem to be struggling for the same diagnosis. When i first went to see gp last year he said my bloods were normal and that i was probably just depressed. It completely put me off going back when he obviously hadnt listened at all to what i had said. The trouble is i was sure then that i was anaemic so was expecting to be put on iron tablets when he said bloods were normal i only queried my iron levels which were fine I'd never even heard of pa back then so never crossed my mind to ask about b vitamins. I wonder how many other people are struggling unaware this forum has been brilliant.
Really hope your symptoms improve now youre getting treatment.
I've only recently joined this forum too but find the people here to be very knowledgeable and friendly.
My B12 is not quite as low as yours but I've had weird symptoms for over 2 years now with little or no help from my GP. It's now hard for me to decide whether he's actually really trying and I'm just not seeing or appreciating it or if he's dismissive and convinced that at best that I have depression/anxiety or at worst he doesn't know or care and just wants to prescribe anti depressant/anxiety medications.
I genuinely feel your pain. It feels like after working all my life and hardly ever claiming a penny from the government for anything, I'm a hinderance to the health service and an unnecessary drain on their resources. I'm sure I'm not alone here in feeling that.
"So annoyed yesterday when I got bloods printed and found out they'd been told to check intrinsic factor twice already"
At least you've got proof that the issue was pointed out to the GPs.
If you google "BCSH Cobalamin and Folate Guidelines" page 29 shows the recommended process doctors in UK should follow with those they suspect have b12 deficiency.
It points out when to order an IFA test and also mentions that it is possible to have PA even if IFA test is negative. Some GPs may not have read these guidelines. I gave my GPs a copy of this document.
Page 8 in the same document outlines UK B12 treatment for those with B12 deficiency who have neuro symptoms and those who do not have neuro symptoms.
"From what I've read I'm pretty sure I have pa just need to get gp to agree."
I ticked all my symptoms on PAS Symptoms Checklist and gave it to my GPs . I think you probably need to build up as much evidence as possible.
It might be worth joining the PAs. They are helpful. sympathetic and a good source of info. in some cases they can intervene on behalf of members.
Have you got a result for MCV on your full blood count(FBC), high MCV and high MCH can indicate the possibility of macrocytosis( enlarged red blood cells). Macrocytosis is sometimes found in people who are low in b12 and/or low in folate. Your ferritin is at the lower end of the normal range. Low levels of iron can lead to microcytosis (small red blood cells) so if a person has low iron and low B12/low folate their MCV may appear to be normal.
Have you been offered a blood smear aka blood film? this may show up macrocytic cells and microcytic cells in someone who has both low iron and low folate and/or low B12. hypersegmented neutrophils are sometimes found in people who are b12 deficient.
Dont rely just on doctors. Heal yourself! It is easy !!
Buy yourself Vitamin B12 Hydroxocobalamin 1000 μg Infusions. Use this special type of B12 !! You can also order it by internet.
Learn how to inject yourself. Maybe a doctor or nurse shows you.
For one week or up to a month, inject even 3 times a day intramuscularly. Then less frequent. Observe, how you feel. There is no danger at all with this !
Support this with a Vitamin-B-Komplex.
Go to a good medical specialist, who can check, wether you have got a metabolic disorder, existing in 10 percent of humans in northern Europe.
These people have a problem to absorb B12 by the stomach. It is called Kryptopyrrolurie, Porphyrie, a genetical disorder, that is also in the english royal line and in Albert Einsteins. B12-defiency can lead to mental disorders too.
Usually this disorder must not be a problem at all. It is not a „disease“, but an anomalie. You can be healthy and sound, reach high age – and very often you are highly intelligent, with a sensible, friendly and peaceful character. But these people may f..x. not take psychopharmaka, no drugs, not even a joint. They react contrary to this, called „paradox“, and this breaks down their normal biological regulation systems.
Learn better to cope stress-situations, which plunders your vitamin B resources.
There is much more to know. Screen the internet for this disorder.
Learn about Orthomolekular Medizin, devellopped by the double-nobelprize winner for chemistry Linus Pauling to help his friend Einstein, and dont believe, what most doctors tell about this. They just know Pharma (which makes a better income) !
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