EDITED to include blood results at the end. Thank you guys for all the support.. I'm blown away.
Hi all.
I am a young uni student who has had increasing fatigue over the past year or so. It has really interfered with my academia. In 2018, I was diagnosed with anaemia by my old GP - not through bloods, just through observation of symptoms. Yeah, I know..
I would like to preface this by saying I am in Ireland and I don't think we have the same guidelines to quote like you guys do in the UK. I am moving to the UK (well, if I'm deemed well enough to live on my own) in September so I am delighted to see the increased guidelines you have available..
For a variety of reasons, I changed GP as when presenting to this GP with both depression and fatigue he told me to exercise more and that he couldn't help me further. I have recently seen a spinal surgeon who told me that my scoliosis could have been prevented if I had earlier intervention from my old GP. Once again, with this, he pointed at my spine, said it was scoliosis and left it be.. I have confusion here as well as I presented to my old GP with dizziness years ago. I'm seeing now that this was probably an early onset of anaemia symptoms. But he said I had vertigo. Again, with no basis other than a description based on words.
I have changed to a new GP and when going through my list of diagnosis he asked about my anaemia. I couldn't tell him more than I had heavy periods and my old GP determined I had anaemia as a result of this with low iron. My new GP was bemused by this, he ran bloods back in October and when the results came out, he said I was actually severely B12 deficient and he can't understand why my old GP didn't act on the diagnosis. He says I have irreversible neurological damage due to the absence of any treatment from my old GP
My GP is treating my fatigue as a separate issue. I initially thought it was too. After reading this forum I realise I am not alone in my 14 hour sleeps with no relief. The intermittent falling asleep and need for 2 naps a day. The lack of focus and utter confusion when I wake up. My GP has acknowledged tiredness is a symptom of low B12 but he says it wouldn't be to this extent - hence why he thinks I have chronic fatigue and is a separate issue. I asked for specialist help to give him the benefit of the doubt. He referred me to a rheumatologist, saying that these deal with sleep disorders. The rheumatologist was very much puzzled at the referral and says I seem physically healthy - she ruled out lupus etc, autoimmune disorders. Sent back all clear with no answers to the drawing board with my GP.
Initially, after seeing October bloods my new GP told me to start taking oral B12 supplements. He said that B12 injections existed but they were not very commonly used and that there probably wouldn't be a need for them in my case. I started to supplement with tablets and saw no improvement at all. A couple of weeks later he decided to start me on a loading dose of injections. This was 5 injections of Cyanocobalamin over the course of 3 weeks. I saw little to no improvement on them and he insisted I would see improvement if I gave it time to "kick in". This was in December/early January. By early February, I was at a loss. I seemed to be going downhill again. He said he would see me in March for bloods but after reading here I rang and asked if I could re-do the loading doses. I didn't feel they had done anything the first time. He said he didn't think it was a good idea and we reached a compromise of testing my bloods again.
He hasn't said anything about what type of anaemia I have. I can only assume it's pernicious based on my symptoms and my inability to see improvement on the tablets. I have gone through phases of eating lots of red meat before important events to try and stay awake - a B12 boost... doesn't help at all. This and him putting me on the injections is making me think I don't have the IF..
After the last set of bloods, he rang me saying everything was fine and it was a case of maintenance - keeping good friends and family around me and having him there as a crutch. He told me that my B12 was at 400, having had my last injection at the end of January and the test yielding this result in March. Therefore he thinks
I need no further intervention.
He is a brilliant doctor and is a huge improvement from my last one. I don't think he is intentionally denying evidence but rather going by the blood tests he has which I understand from reading here are not a good indicator. I wish I could give more figures of tests but I have no clue what my b12 level was originally - that 400 figure was the first blood figure I have ever heard from him. He doesn't seem keen on sharing the results and when I ask, he describes rather than giving me numbers. I was so shocked to see you all with your figures on here - I wanted to compare but I have no clue!
What should my next steps be? I cannot go on like this. I have exams in the summer. I am attending my classes online as I physically cannot get up and attend. My parents believe me to be very immunovulnerable with everything that is going on and are taking huge precautions - I am already on immunosuppresant tablets that heighten potassium levels and they are very scared given how frail I am. I am confused almost always and my train of thought is fogged, so they have to look out for me. I have to live with them again as my faints are starting to become frequent. I am barely eating as I am sleeping always and I cannot find the energy to leave the house and see friends.. nevermind work. I am not living at all and it isn't sustainable to live with my parents at this age, especially given the expense of these injections.
My parents work in the health service and just last week they decided to inject the remaining injections I had left from prescription at home as they say they cannot recognise me anymore and are shocked at my GP turning down injections. Part of the motivation for this was the exams I had last week, which I ended up falling asleep during! My university are recommending I drop out and I really cannot afford this, I'm sure you all understand the impacts on life this condition has..
Should I try to find a private GP for a second opinion? I want to go back to my GP again but I am worried as having injected myself, he will see the blood results are even higher.. He is an advocate for evidence-based medicine so I understand this!
My symptoms include the fatigue, shortness of breath, confusion, memory loss, cold hands/feet/poor circulation, muscle aches, greying hair, brain fog, dizziness, numbness, depression, inability to focus, loss of appetite/weight loss, hair loss, awful balance, hallucinations and epigastric problems.. I bruise like a tomato also.
I am scared to be labelled as a hypochondriac but even now reading this back, my family say I am underestimating the symptoms I have.. I'm sitting here completely bemused at how I lead a "normal" life with work, college, social activities in a day. Because even typing this is going to warrant a nap for me!
I have an exam tomorrow, so I'm back to the drawing board of desperation.
Any advice, please give it, I will take it with open arms. This is a wonderful community. Thank you all so much in advance and sorry for such a long post.
BLOODS POST 6 INJECTIONS
Folate 9.9 ug/L
Serum Ferritin 59.3 ug/L
B12 400 ng/L (makes me fearful of what it was initially if this is after 6 injections)
ESR 2 mm/hr
MCV 95.0 fL
Iron 32 umol/L (flagged as it's above, probably because I was supplementing iron so heavily as my old GP believed I was iron deficient)
TS 58 (also flagged as possible Iron accumulation)
Not sure if there's any other relevant bloods I should be including but these are the ones I've seen most commonly on the community. Would appreciate opinions on these (I'm not expecting medical advice - just some thoughts as I am so new to this)
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Hi thank you so much this was a huge help. I knew I could count on this forum based on the interactions I've seen from others.
I've had my thyroid checked for years, every symptom matches up and it's usually first port of call for GPs but apparently all clear every time. Going to ring surgery tomorrow and get the results of both bloods and maybe liaise here for some pointers.
My parents work in emergency services so, unfortunately, no link to doctors or injections but it's handy for sharps disposals etc. I am glad I have some sort of link to healthcare because it is truly scary otherwise.
I'm not sure what sort of specialist to ask for referral to. Neurologist?
My doctor wasn't aware my tabs were immunosuppressants until I pointed this out to him - scary how we could easily let things go amiss
Also did not know the difference with different types of B12 - he's insisting every 3 months (which is still too infrequent) but since I'm on cyano that clearly is incorrect, that's vital. 3 injections are the world of a difference when you're so low! Very useful piece of info.
Thank you so much. You have been a huge help and a huge relief to come back to post with this. Will be taking your advice as a guideline for next appointment.
I have the same question - I simply cannot understand why he wouldn't give them (even if it was just to shut me up and get me off his case) when there is no possible side effects!
Disagrees that they're a good idea because he doesn't think they'll help.
So why can't I at least try them..
Going the self injection route for now until I see him next but it would be very nice to have my GP stand over this for monitoring and without feeling like a scam.
Point 1 is about being under treated for B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.
It mentions Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so patient has symptoms of deficiency.
The link has letter templates on a variety of situations linked to B12 deficiency that people can base their own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
"I wish I could give more figures of tests but I have no clue what my b12 level was originally - that 400 figure was the first blood figure I have ever heard from him. He doesn't seem keen on sharing the results "
Each CCG/Health Board/NHS Hospital Trust in UK will have its own local guidelines on treatment/diagnosis of B12
I suggest you track down the guidelines on treatment/diagnosis of B12 deficiency for your area of Ireland and compare them with BSH,NICE CKS and BNF links above and Irish guidelines.
Some areas of UK have guidelines that can be unhelpful. See blog post below.
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test but sadly some doctors may be unaware that it is possible to have Antibody Negative Pernicious Anaemia.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment in book is out of date. See BNF link in this reply.
"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 with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Copies of above books may be available from local library services.
"He says I have irreversible neurological damage due to the absence of any treatment from my old GP"
Neurological Consequences of B12 Deficiency
Vital to get adequate treatment.
Untreated or under treated B12 deficiency increases the risk of permanent neurological damage including problems with spinal cord.
May be worth drawing your doctor's attention to this in any letter or conversation as may concentrate their mind...
Has your GP/doctor got a list of all of your symptoms especially any neuro symptoms and symptoms affecting your spinal area? See links to symptoms lists up page.
If neuro symptoms present, has your doctor
1) referred you to a neurologist?
2) referred you to a haematologist?
3) if gut symptoms present, referred you to a gastro enterologist?
Some UK forum members who cannot get treatment from NHS or whose level of NHS treatment is not enough to keep symptoms at bay, resort to self treatment using B12 ampoules sourced from Europe and some use private GPs and other sources such as beauty salons.
I feel that self injection is an absolute last resort but some on here feel there is no other option.
There are posts on this forum from people who treat themselves.There may be legal and ethical issues involved.
Some people on forum have mentioned B12 infusions in past but as far as I know this is not offered on NHS but perhaps in Ireland? Maybe available privately.
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites etc
Hi - I've seen you around loads, saved lots of your links!
It was interesting for me to find our guide here is a knock-off of the NHS but with not even a fragment of the detail. I don't think we have local guidelines in the way you do - seems to be underrepresented hugely. Can't see why my GP would refuse to model off NHS guidelines in the absence of our ones. So I have my reading list sorted.
I can't seem to find the link about testing after treatment - would you be able to point me to that? I might have missed it.
Thank you so much - you are truly a saviour here. I was sorry to read about your balance issues in the linked and I am glad that you are doing better and passing your knowledge on to us now.
Table 1 in above article is about frequent misconceptions about B12 deficiency.
There should be some useful quotes in link to BSH Cobalamin and Folate Guidelines in my other reply.
I suggest putting queries about treatment/diagnosis into brief letters to the doctor. See letter writing link in my other reply.
More about writing letters
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
"He says I have irreversible neurological damage"
I suggest you ask your doctor for more details of the neuro damage he mentioned or access your medical records to find out for yourself if he's unhelpful.
It can sometimes be upsetting to read what has been written by doctors.
Do you have problems with balance, problems with proprioception (awareness of where your body is in space), do you have a strange way of walking (unusual gait) or symptoms that affect your spine?
If the answer is yes to any of these or you have other neuro symptoms eg those consistent with neuropathy (nerve damage) then insist on a referral to a neurologist.
Be warned that ignorance about B12 deficiency exists among Gps and specialist doctors, I saw numerous neurologists and all but one totally missed the B12 deficiency despite typical symptoms. Even the one who thought it was a possibility did not diagnose me.
If you are able to, take someone with you who is supportive and who has read about B12 deficiency to appointments. They could ask questions on your behalf especially if your brain is foggy and maybe take notes.
You could also ask permission to record consultations and if you have memory issues and brainfog you may be able to argue that recording consultations is necessary.
In UK, doctors refer to BNF (British National Formulary) for guidance on treatment and may also refer to local area guidelines.
Most of their members are in UK but they do have some in other countries.
PAS may be able to suggest useful info that you could pass on to your doctor.
Health professionals can join PAS as associate members with no fee. I'm assuming this would apply to health professionals in Ireland but check with PAS.
Some forum members have had support from the person who runs B12 Deficiency Info website.
400 is low considering you've had injections. It was probably very low before that
I think you may need to trial hydroxocobalamin injections either privately or at home. First one and ideally second one needs to be supervised or in a medical setting. Try going back to GP with some papers about treating neurological complications but you may well draw a blank. Could be the cyano just doesn t work for you.
Some people manage to get by on high dose sublingual lozenges, which would be easier for your age group and while studying but as you've got back issues it really needs intensive treatment before going to a maintenance schedule
I thought so too about the level post injections..
Might be worth taking a jump to hydroxo but not sure, I think cyano is our default here (I know it's hydroxo in the UK) so he might be even more reluctant on that one! You say first and second in a medical setting, is that for reactions or just to ensure correct injection method?
I've put up other results from the bloods (not sure if they're relevant but had to request them from GP).
Would sublingual work when you're pernicious? I thought that would be included in the absorption problem.
Hi, it’s incredible that you are keeping going. I don’t know if this is any help but my whole family has B12 deficiency and only 1 out of 4 got loading doses, then was denied further treatment as levels were too high! One is a year into battling the system with no luck so far. I self inject - I had neuro symptoms and I am a year in feeling so much better - but still injecting every other day. I would take get your results and understand them for yourself with help on here and then take action. Good luck. You are young so there’s a really good chance the neuro symptoms can be fixed🤞.
I'm sorry to hear! It's crazy that they test after loading doses, it's almost as if it's giving them the answers they want to hear and no injections for us..
I've ordered some injections to self inject but fearful doctor is going to blood test me again! I'd prefer to be honest with him and tell him I'm self-injecting but it's crazy really.. what a scary condition.
I've gotten my bloods back so I'm going to edit the post to include them.. hopefully I got the right things tested to help interpretation.
Best of luck back at you and thank you for the reply
Sorry to hear that you are going through all these problems. Can I ask what you are taking immunosuppressant tablets for? You don’t mention a condition that is being treated by them.
Hi yes - I had a problem with sky high testosterone (as a female!) so I have to take repressors to balance me hormonally and not drive my periods crazy. They don't cause any problems luckily and they're actually a help as it means they elevate potassium so I don't need to watch out for that dropping with injections.
Ok. I had wondered if the tablets or condition you were taking them for could be causing side effects but you seem to know that that’s not the case. Good. Other replies have probably given all the following information already. The commonest type of anaemia is iron deficiency anaemia where you have a low number of normal red blood cells caused by too little iron in your diet or heavy blood loss such as heavy periods. Macrocyctic anaemia is where you have abnormally large red blood cells and too few normal red blood cells. This is commonly caused by B12 or folate deficiency. Your doctor should have been able to tell from your blood test which type you have. With macrocyctic anaemia the MCV is often high and the large red blood cells can be seen on a blood smear. B12 deficiency is caused by either not eating enough B12 in your diet eg vegetarian or because you can’t absorb the B12 properly from your food in your digestive system into your blood stream. Absorption problems can be caused by conditions like Pernicious Anaemia, coeliac disease, taking Ppis such as omeprazole for years and gut surgery. In Pernicious anaemia you don’t have enough of a protein called intrinsic factor in your gut which needs to bind to B12 from your food in order for it to be absorbed. If you take ppis or have too little stomach acid for another reason then B12 can’t be separated from food which has to happen before it can join to the intrinsic factor. There are also functional B12 problems which I think are fairly rare where the B12 is absorbed from the gut but can’t be used by the cells properly. You can have a blood test to see if you have intrinsic factor antibodies. If the test is positive it means you have pernicious anaemia but if it is negative it doesn’t mean that you don’t have it. If you have PA you need to have b12 injections regularly for the rest of your life - loading doses followed by one injection every three months of hydroxocobalamin is standard. It is supposedly possible to absorb b12 from tablets by diffusion rather than via intrinsic factor but you would have to have very high dose supplements and you might not absorb enough so injections are much more reliable. If you have absorption problems from taking ppis then b12 tablets may work. But when you are b12 deficient loading injections are the best way to get b12 levels up quickly. From what you have written it looks as though your latest ferritin, b12, MCV are all normal but in saying this I am assuming that the lab doing your blood tests is using the same normal ranges that my blood results have. It seems likely that you will need regular b12 injections depending on what your Gp thinks was the cause of your low b12. If he wants you to take tablets then your b12 level should be checked regularly to make sure you are absorbing them. You don’t mention what your neurological symptoms are. Referral to a neurologist might be a good idea. B12 deficiency can cause neurological symptoms but so can many other conditions and it’s possible to have nerve conduction tests to find out which nerves are damaged although this doesn’t always lead to a diagnosis and referral to a neurologist can take a long time on the nhs. You don’t mention being tested for diabetes. It would be a good idea to get your Hb1ac done to check for diabetes if I hasn’t been done already. Feeling unwell and not knowing why is stressful and don’t underestimate the real physical effect that stress can have so be kind to yourself. I hope your exams go well and be proud of yourself for even sitting them when you feel unwell. If you don’t get the results you hope for or feel too unwell to take the exams remember there is no one path through life and if one plan doesn’t work out then something else will. Take care and I hope your Gp sorts things out for you.
I also live in Ireland and have had PA for over two years. I thought I would share my experiences with you as we appear to have much in common. I do not normally do this or offer advice of any kind on this forum as I have no medical training: I was however touched by your story and really feel that you need to act urgently. The following opinions therefore are entirely personal and subjective: if any are wrong I have no doubt that other more enlightened members of this forum will put me right.
First of all your symptoms are entirely consistent with B12 deficiency. That does not by itself prove anything, but it is a start. Like you I was told to check my thyroid and some things, but all were ruled out. It is much more difficult to get a definite diagnosis of PA but two simple principles have helped me: do I have many or most of the B12d symptoms? (yes I do); do injections of B12 help relieve the symptoms (yes, quite dramatically). Ergo I have some kind of B12 deficiency. Since B12 tablets do not help my assumption is that my problem is not dietary but PA. So, my advice to you is as follows:
1) I have seen many doctors over the past couple of years both in Ireland and elsewhere - they included GPs, cardiologists, neurologists and gastro types. Literally not one of them has helped me; not one of them had the slightest clue about B12d. My salvation has been this forum and because of it I have learned that one has to rely on oneself for basic treatment. Read the many learned articles to be found here and read as many posts as you can: form your own views based on this. Do not expect to find a doctor with any real understanding of PA - you might be lucky of course, after all there must be some around! But basically, take matters into your own hands.
2) If you have PA you need to begin a loading course of B12 injections without delay. Following that you will need to establish a regular pattern of injections - how frequently depends on your own situation. Like so many people on this forum (including me) you will probably have to order your own b12 from Germany. You could of course try talking to your GP about this - hinting that you will go ahead and self inject if he does not help. The standard injectable form of B12 used in Ireland and the UK is hydroxocobalamin, even though some doctors in Ireland do not appear to know this. I will not go details here on how to purchase it - all of that is already available on this forum in great detail. I would only say that since Ireland is still in the EU (for the moment) then there are no problems in having the stuff delivered from Germany. As for needles/syringes etc you can if you like use online shops in the UK mentioned elsewhere on this forum or, alternatively, an Irish online company called Medguard (medguard.ie/ ) which is based in Dublin.
3) If you have PA you will almost certainly have low stomach acid which can cause all kinds of other unpleasant symptoms. Once again this is discussed in great detail elsewhere and I won't go into all of that now. Suffice to say that I had all of these symptoms and it took me over a year to find solutions. As a result I now start each day with a glass of warm water containing a large spoonful of lemon or lime juice; this is followed by a cup of kefir; I might also have some more lime juice before my main meal as well as a good probiotic tablet or capsule. It used to be hard to find kefir in Ireland but now you can buy it in any Polish food shop, so no excuses any more... On this regime I rarely have any stomach problems. This is my personal recommendation for you if you have any stomach issues, but no doubt others here will have different ideas...
So I hope this helps. Good luck to you and let us know how you get on
Hi Frank! Good (or not so good considering this condition!) to see other Irish folk on here. I'm sorry to hear of your story and I'm glad you had some improvement. You seem to have found things that have worked for you and I am glad you shared.
Will be taking everything on board.. I have learned a lot from your post. Thank you for the lengthy text. I know that can take a lot of energy with this condition. Even a flight of stairs is challenging!
I'll be subtly mentioning self-injections to the GP (I've already ordered some...) and frequenting the polish shop so it seems! I'm holding out a bit of hope that my GP will be at least a bit open to the idea of injections but you're right - they seem to go by their training which is ill-informed. He is young so I am hoping he is a bit more open to ideas. If he is in any way helpful and makes a U-turn on treatment and beliefs I'll have to send you on to him.. sounds like you could do with an understanding medical professional.
I am glad that this community have taken it upon themselves to treat and share knowledge because it is really scary to depend on medical professionals when you feel this low. There is no point in chopping and changing GPs to be met with the same answer every time - it must be so damaging. I am crossing my fingers my one will see some sense!
Thank you for taking the time to write - it gave me some hope alongside reading the other posters. Awaiting my B12 delivery from Germany and I will definitely check out the stomach suggestions you mentioned. Your suggestions were beyond helpful! I will make sure to check back and update.
So sorry to read your story, everybody given good advise. I personally invested in buying the booksIn sleepy bunny reply above, and even gave them to my doctor. I'm sure you will read so many things you can connect with.
Sorry to say you might be in for a long journey to recovery, BUT with the right treatment you will recover, stronger,fitter, and wiser.
Hello my heart goes out to you, it’s not dissimilar from my story, for me coeliac disease was the culprit being anaemic is a big pointer … please gooogle ‘ gluten ataxia’ be aware the tests for coeliac disease are not reliable mine was only found on the third biopsy … have a look on the coeliac forum to see if you can relate …
Have you accessed your records for period when you saw the spinal surgeon?
In severe cases of B12 deficiency, there is an increased risk of damage to the spinal cord so I wondered if he noticed anything else besides the scoliosis.
More about SACD , subacute combined degeneration of the spinal cord
These links may have details that could be upsetting.
What does your doctor think has caused your B12 deficiency?
I wonder if he has assumed that it is due to diet?
If he thinks it's diet related then worth writing out a typical weekly diet, food and drinks so you can discuss this with him.
In UK, B12 deficiency due to diet is sometimes treated with low dose cyanocobalamin tablets. B12 deficiency due to other causes is usually treated with B12 injections.
In UK, my understanding is that B12 deficiency where there are neuro symptoms should be treated with B12 injections whatever the cause.
If B12 deficiency is not due to diet then it's more likely that there is an absorption problem in the gut.
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
You mention various neuro symptoms so I would assume that you would be on a similar pattern to the second treatment pattern above.
I think your doctor is basing his treatment so far on the first UK treatment pattern as you mention 6 loading injections.
You could include in any letter to/conversation with doctor that in UK, BNF states every other day loading injections for those with neuro symptoms then maintenance jabs every 2 months.
You may be able to access a copy of Irish National Formulary (INF)from a library if you can't access it online.
Have you been tested for Coeliac disease, an auto immune condition that can lead to b12 deficiency. Suggest you seek out relevant guidelines for Ireland.
Hi, once again thank you so much for the detailed response. You've given me some ideas.. definitely things to think about. My problems all seem to link together and quite possible the B12 could be a perpitrator.
I haven't been tested for coeliac, I might endeavour for this alongside testing for H.Ployri - this was something that ran in the family (I understand it is not genetic however related to food prep could mean we all have it)
Not sure if he's done the specific test for PA (although I do understand this can be tricky with false negatives) however he initially gave me oral tablets which were having no effect - I have a lot of red meat (b12 rich) in diet anyway and this combined with ineffective tablets were enough for him to change me to the injections. Enlarged red blood cells too so everything seems to be pointing to PA. Found out today from a glance at his computer that my initial level was 177 - up to 400 after 6 jabs. So at least now I know where I started.
Thank you for the INF - have spent days trying to find guidelines of some sort for Ireland - we don't seem to have any at all like you guys do in UK. Hoping I will be in a better place after my move to the UK because there are guidelines to back up your fight.
Have found a guideline that isn't even related to GP guidance so not the typical place to look - its related to doctors ordering bloods. National Laboratory Handbook. We don't seem to have many (at least publicized) guidelines here so was struggling to find something to back up my points.
Will post it here in case there are any other Irish folk browsing who end up in my position but I am going to use this as the basis for my argument of needing more injections.
Mentioned neuro symptoms to the practice nurse today who told me the levels were fine and told me to discuss it with doctor if I wanted more. So to the doctor I will go - with this piece of evidence.
National Laboratory Handbook of Ireland B12 Guideline.
"Enlarged red blood cells too so everything seems to be pointing to PA"
The medical term for enlarged red blood cells is macrocytosis.
Macrocytosis can be associated with B12 deficiency and folate deficiency.
Any cause of B12 deficiency may lead to macrocytosis not just PA.
Some doctors may not be aware that it is possible to have severe B12 deficiency without any macrocytosis.
Effects on red blood cells of B12 deficiency can be masked if a patient also has iron deficiency. Iron deficiency can lead to microcytosis (small red blood cells).
Macrocytosis from a B12 deficiency can also be masked if person receives folate treatment for a folate deficiency. More info in links below and also in BSH Cobalamin and Folate Guidelines link.
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
More info on testing in BSH Cobalamin and Folate Guidelines link.
"Mentioned neuro symptoms to the practice nurse today who told me the levels were fine and told me to discuss it with doctor if I wanted more. So to the doctor I will go"
Link below is about writing to GP if under treated for B12 deficiency with neuro symptoms.
Is there any possibility of internal parasites eg fish tapeworm?
There are various internal parasites that may lead to B12 deficiency.
Do you ever eat raw or uncooked fish eg sushi, smoked salmon etc?
Have you ever lived or stayed in an area of the world where internal parasites are common?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell, eosinophil result can be found on Full Blood Count (FBC).
Found these guidelines from Northern Ireland which refer to various types of anaemia, including macrocytic anaemia, B12 is mentioned.
I was searching online using the terms " Ireland Macrocytic Anaemia" and this showed some interesting links. I've included a couple below but there were more. Some links were to info from Northern Ireland.
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Advice about diarrhoea symptoms please
Horrendous Experience at Haematologist Appointment
Blood test results - advice pls
Desperately needing advice on Blood test results
