Waiting on blood tests for PA. Does t... - Pernicious Anaemi...

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Waiting on blood tests for PA. Does this sound like anyones experience?

liaratsoni profile image
27 Replies

Hi everyone!

I am a 22 year old woman who is currently waiting on results for an intrinsic factor blood test (and due to how uncomfortable I am it feels like its taking a lifetime!) but I wondered if I could ask if my experience sounds like anyone else so that I am as prepared with info as possible? Sorry this may be a long post!

It all started when Nov 2017 I discovered I had SEVERE iron deficiency by chance when I went for testing over my lack of periods and strangely enough was pretty asymptomatic until I started getting extreme fatigue taking their iron medicine (I may have been fatigued before however but just become use to it). I had a ferritin level of 3 my haemocrit was under normal at 0.36, my b12 was under norm at 198 and my wbc and neutrophils were also low but strangely my rbc count was fine. Despite explaining that I wasn't having a period so I couldn't be losing iron through that blood loss it was never investigated and only the iron was treated (I only know by looking a my own records) and I wasn't treated for the b12. Instead it was discovered via ultrasound and lh/fsh levels I had pcos and I was sent to hematology over my white blood count. Since then I have been monitored for my cylical neutropenia that never goes into normal levels except when ill but again nobody has looked into WHY. Over the past 2 years and a half I have deteriorated health wise suddenly getting bouts of infections and frequent colds after previously never getting ill and I also have got oral thrush multiple times. The first symptom I developed though was extreme fatigue. I use to exercise only once a week and suddenly I couldn't get through a class. I had to quit and found that exercise of any kind made me get dizzy and short of breath very quickly. I mentioned this to my doc but they just passed it off as pcos related. In the last year however the fatigue has got worse and worse to the point where in the last six months daily tasks were becoming difficult. Right now its reached a peak and I can barely walk around the supermarket and spend all day lying on the sofa exhausted. I can't even pick up a brush and paint (my passion and what I was trying to pursue as a career before all this) for more than an hour. The last few weeks/couple of months have been and are HELL. On top of the exhaustion I have developed tinnitus, blurred vision and difficulty focusing, weight loss and inability to keep weight up, my hands and feet are always like ice to the point I get chillblanes in winter, occasional pins and needles in hands and feet and tingling lips, my skin is yellowed and my tongue is scalloped and covered in a disgusting coating at the back. I look dead with huge dark circles like purple bruises under my eyes despite sleeping fine and doing nothing all day. Most debilitating however is the indigestion which started about a month ago. I developed sudden frequent suppressed burping regardless of eating, the bloating and swollen abdomen I have long suffered with has gotten worse and what I would assume is acid is refluxing up into my cobblestoned throat and nasopharynx (no heartburn) and causing a thick uncomfortable post nasal drip that feels trapped in behind my uvula and is very distressing and debilatating. (I was put on the typical reflux diet and it has done nothing and I have felt either no difference/BETTER after retrying a tomato/chili based sauce.) I have also alongside this found my stomach gurgles frequently and my mouth gets dry and my spit is thick and I have a constant salty/bad taste in mouth - I assume due to the congestion caused by the reflux. These last few weeks I can eat hardly any food before I can't eat any longer without burping/swallowing becoming very uncomfortable, I get stomach aches and it feels like my throat is too 'full'. Meat in particular is harder to digest and I can't eat anything dry or with skin without it getting stuck in my throat. I am a very tall slim girl with a high metabolism who usually has to eat a lot and as a result my already low weight I had been struggling to keep up for the last six months despite previously trialing eating way more than normal is now dangerously low and isn't helped by the fact that eating anything is uncomfortable and an ordeal in mucus. This has been going on for the past month. My neutropenia continues and last visit was worst its been (my lymphocytes and monocytes are also frequently low) and my heamocrit is only at 0.38 (normal here considered over 0.37). My b12 has stayed coninutally low since 2017 staying around 215 - something I have brought up multiple times to doctors as I am not a vegan so it should NOT be so low and has stayed the same after a period of eating b12 fortified foods on top of 2 servings of meat a day. My iron which only went up to a mere 24 after 3 months of the iron meds was considered fine and left has steadily decreased back down to 17 and I am still not menstruating despite in other ways healing my pcos so again no blood loss is possible through periods. I was also found last month to be VIt d deficient for which I have been on a supplement for and was regiven the iron but can't take it because of my stomach being so messed up. I requested a retest of the vit d, iron and the b12 that I am also waiting on to. I have been frustrated for years that my low iron and b12 were never investigated and that no one took my fatigue seriously and it was only when I myself looked into my results I saw the low iron, b12 and vit d and the low haemocrit that accompanied my neutropenia did some research and came across pernicious anemia. I want to make sure that this time around I am finally taken seriously - the doctor that ordered all my tests was lovely and seems to be taking this really seriously - and want to be as loaded up on info about this condition as possible hence why I wanted to ask this forum if this sounds like PA. Thank you so much for your time in reading this!

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pvanderaa profile image
pvanderaa

Unfortunately PA is probably the most misdiagnosed condition. You sound very typical. The reflux is probably too low a stomach acid especially when you say you felt better after tomato and chili.

You have a lot of neurological symptoms so you probably need B12 injections and you want any further blood test to be >1500 pg/ml (ng/L) to halt the nerve damage and enable repair. I’m not medically trained but be prepared to argue for loading doses and then a regime like weekly injections until the neurological symptoms stop or there is no further improvements.

As the diagnosis of B12D may never be certain, argue for a trial period at leadership as B12 is water soluble and can do you no harm as you can’t overdose. Doctors do not want to experiment because of the hypocratic oath. But you have had low B12 test results is the past so prescribing B12 injections should be thr normal regime.

Start a logbook of all your symptoms, energy, balance, nausea, low stomach acid, and stress the neurological ones. Provide a printed list to your GP and ask for it to be included in your record. Somehow when the GP id holding the paper in their hand, the evidence becomes overwhelming and they come around.

You will also need to supplement with folic acid and a daily multivitamin to support B12 and nerve repair. Stress to your doctor that these are harmless treatment but neurological damage can become irreversible very quickly.

pvanderaa profile image
pvanderaa

I’m presuming that the intrinsic factor test comes back negative. They are quite unreliable and even coming back negative doesn’t mean you don’t have a B12 deficiency. PA, the genetic cause, may not be the only reason.

liaratsoni profile image
liaratsoni in reply topvanderaa

Thank you so much for the detailed response! I had seen from looking on here that low stomach acid can be a symptom of this and it makes sense considering the reflux like symptoms have started alongside the neurological symptoms and the fatigue reaching it's worst. I have typed up a document listing all my symptoms and research when I was looking into this and I love your idea of handing them the physical piece of paper listing symptoms so that they can really appreciate the extent. The doctor handling these tests is a new doctor (I have seen SO many haha!) and she seems to really appreciate the severity and her first instinct was PA before I even mentioned it. In the only recent strike of good luck I have my routine hematology appointment on wednesday which will be a week after I had my myraid of blood tests so hopefully they will all be back then and I can start getting treated soon. I have also seen on here that intrinsic factor test isn’t conclusive but I have seen the health service where I live does clarify this on tests so hopefully I won’t have to fight them on that! I have already been having the more severe symptoms over a month and so I really want to start as soon as possible to minimise damage! Thank you again

Sleepybunny profile image
Sleepybunny

Hi,

I'm sure you'll find support here.

Some links below may have UK specific info. If you are in another country, you may find units and reference ranges are different.

Do you mind me asking which country you are in? The reason I'm asking is because patterns of treatment vary from country to country, even the type of B12 used can vary.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

You mention an IFA test which was negative. It is possible to have Antibody Negative PA.

Have you also been tested for

Coeliac disease, H pylori infection, Internal parasites eg fish tapeworm and other conditions that may lead to B12 deficiency eg Crohns disease?

Any exposure to nitrous oxide eg recent surgery involving nitrous oxide as part of anaesthesia?

NICE guidelines Coeliac Disease (2015 version) UK document

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection?

patient.info/digestive-heal...

Nitrous Oxide

gov.uk/drug-safety-update/n...

Diet

Do you eat plenty of B12 rich food eg meat, fish, eggs, dairy, foods fortified with B12 etc?

Being vegan or vegetarian can be a risk factor for developing B12 deficiency.

If you're in UK, I suggest reading these documents.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

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). Book doe snot mention recent BNF change.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK. has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

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.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Vital to get adequate treatment if b12 deficient or there can be severe consequences.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

B12 deficiency films

b12deficiency.info/films/

I am not medically trained. More B12 info in pinned posts on this forum.

liaratsoni profile image
liaratsoni in reply toSleepybunny

Thank you so much for all the links and info! I do live in the UK so the info is particularly helpful!

wedgewood profile image
wedgewood

Sorry to hear how bad you feel. You have come to the right place for advice . You have had a good response from pvanderaa. Yes your symptoms definitely sound like P.A. I was lucky and got a diagnosis without any trouble , but a negative test for Intrinsic Factor is no proof that you don’t have P.A. You will need lifelong treatment with B12 injections . and with the correct amount , you will be able to lead a normal life

. P.A. patients have low/no stomach acid which upsets the stomach flora . A probiotic called Symprove helped me no end at first . Natural probiotics like real yoghurt , organic raw sauerkraut , kefir and kimchi are great too , and one can learn how to make them oneself . Lack of stomach acid can lead to bloating , burping , stomach pain .

B12 works with B9 ( folate in fruit and veg , folic acid in tablets )

Let us know how you get on please . Your symptoms sound like a classic case of neglected Pernicious Anaemia . We are all different , and need different amounts of injections . After initial treatment of loading doses ( 6 over 2 weeks), some patients manage on one injection every 2-3 months . I need one every week . A friend needs one a day . One size doesn’t fit all , no matter what the doctors say . One huge blessing is that one cannot overdose . Very best wishes .

liaratsoni profile image
liaratsoni in reply towedgewood

Thank you so much for responding and for the kind wishes - I will definitely come back with an update! I have seen on here that a negative IF test doesn’t mean I don’t have it and I am hoping that the worsening symptoms despite a b12 rich diet are enough to convince them to give me injections without having to fight too much! Regarding the stomach acid I will def up my intake of probiotics! Is the stomach acid something the b12 injections will help with? As I mentioned the doctor handling this is new and I’ve never seen her before but she was so lovely and immediately took me seriously jumping straight into a myraid of bloodtests and explaining my body not producing intrinsic factor to me before I had even mentioned PA. Luckily my routine hematology appointment is wednesday (hopefully when my blood tests come back) and she was eager for me to see them and to have me tested as soon as possible so I’m going to request she become my doctor managing this as I get the impression she understands it quite well and will be more willing to take my treatment seriously!

pvanderaa profile image
pvanderaa in reply toliaratsoni

B12 doesn’t directly help with stomach acid. Acid and IF are produced by the parietal cells in the lining of the stomach and they are connected to the brain via the vagus nerve. The B12D starts as a slow downward spiral and my feeling is that nerve damage to the vagus nerve is the main reason that it goes down faster and faster.

Once you get B12, the repair of everything in your body starts and a whole lot of new symptoms show up. You may think you are having a reaction to B12. It’s just metabolism kicking into high gear and the rest of your body having to work off the metabolic byproducts. You will feel like you are on a roller coaster ride.

Record and Score the symptoms in the 3 or 4 days after the injection. Treat each injection as day zero and reset the clock each time. Compare day 1 to day 1 the previous cycle(s), day 2 to day 2, etc. trying not to compare day-to-day which just confuses things.

These new symptoms are “good” symptoms from the repair. Unfortunately they can look and feel a lot like the symptoms you already have from the deficiency. You may feel worse before you feel better. My gauge was the worse I felt after injection, the lower my B12 had been before the injection.

If you can get your GP to buy into this idea you will be doing great.

The lower your B12 got before the injection mean that you just need more frequent injections. Once you get to the point were the roller coaster ride ride levels off and you are getting sufficient injections to not go to the deficient side of some threshold that is unique to you and your level of activity you and your GP will have found the right dosage level. This method is call “treat by symptoms”. Any further blood tests should be off the top of the test range.

As nerve repair starts the signals to the brain get stronger and it takes the brain about 3 to 4 days to recalibrate. Stress and worry about the new symptoms seems to make this recalibration take longer. Realizing that these symptoms are illusions of the nerve repair and feeling good that nerve repair is occurring helps the brain recalibrate faster.

Gentle range of motion exercises can also stimulate the nerves to repair faster.

The symptoms of nerve repair are counterintuitive and similar to your regular B12D symptoms. Hence you feel worse. Nausea and hunger are two that come from vagus nerve repair. Muscle pain is another that comes from other nerve repair and so getting started seems much harder but once you get going you’ll find you are able to pace yourself and keep going.

As you begin to feel better, you will naturally do more and more and have set backs occasionally, this is all progress.

Keep your logbook going throughout. Treat any anxiety as just another symptom and measure it as well. It is a psychological symptom brought on by neurological damage.

Your GP may think you have become a total hypochondriac so get out in front of this with your GP and hopefully you won’t have to fight for more frequent injections.

Once you recognize your pattern and sequence of symptoms after a jab, you can anticipate the symptoms and feel like you get some control back.

wedgewood profile image
wedgewood in reply toliaratsoni

Yes , once you are well into the correct treatment , your gut problems will ease , but always try to help things along with acidic drinks . Some people like diluted organic cider apple vinegar . A member on this forum swears by lime juice. Some people try Betaine Hydrochloric acid with pepsin capsules . Look up diets for Hypochlorhydria and Achlorhydria ( low and no stomach acid ) Stomach acid is needed for breakdown of food to absorb other vitamins and minerals ( hence its good to take a basic multi-vitamin and mineral tablet , as well as getting a good balanced diet ) There is also a herbal drink that one can make called “Swedish Bitters” The herbal mixture can be made up as a tisane( , or steeped in vodka!) This is a very bitter drink .

All the best . I hope that you will get on well with your young doctor -sounds promising so far !

liaratsoni profile image
liaratsoni in reply towedgewood

Thank you both again! I spoke with the doctor again today with most of my blood tests bar the IF antibody test having come back and it was not a helpful convo - she didn't even remember why I was calling her or what was wrong with me! She said that I didn't have anemia because my haemoglobin was fine - even though I explained to her last week that last time I had iron def anemia my haemoglobin and red cells were fine it was my haemocrit that was low - and said my b12 had gone up to 280 so I was fine. My haemocrit this time was 0.39 normal 0.37-0.47 and my iron has also suddenly gone up to 43?! (but again this still isnt exactly massively high!) My intake of b12 containing foods hasn't changed since my last test - I've been eating meat/fish twice a day but not much else because its so hard/uncomfortable to eat. The only difference is my vitamin d supplement since my last 215 level blood test (which has brought my levels up slightly but still not normal.) and the fact I am eating hardly anything. I didn't even bother to remind her that I'm having neurological and digestive symptoms and YELLOW SKIN when she said I probably had chronic fatigue syndrome and prescribed me really strong antiacids. I'm seeing the hematologist tomorrow so I am going to make my case very strongly to him aided by the fact that my mum is so angry about all this she wants to see him too haha! But I can't see any reason why my b12 and iron has suddenly gone up (though not exactly massively) after 3 years of being 215 or less for the b12 and decreasing steadily for the iron when nothing about my diet has changed? Either way it definetley hasn't solved the symptoms I'm having and its definetley not sustainable if the increase only comes when I'm not able to eat!

Sleepybunny profile image
Sleepybunny in reply toliaratsoni

Hi again,

Please think about contacting PAS soon or perhaps your mum can.

If you join, you may be able to arrange for your GP to speak to the chairman of PAS, Martyn Hooper. You do not need to have a confirmed diagnosis of PA to join PAS.

You describe many symptoms that are consistent with PA and other causes of B12 deficiency.

"I'm having neurological and digestive symptoms and YELLOW SKIN"

A yellow tinge to the skin can be a sign of PA.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Do you have a PAS support group close to you?

They can be a useful source of info on helpful GPs etc.

Delayed treatment of B12 deficiency whether PA or other cause can lead to permanent neurological damage. I have met someone who suffered SACD (sub acute combined degeneration of the spinal cord) due to delayed diagnosis of B12 deficiency. I believe the chairman of PAS has SACD.

"she said I probably had chronic fatigue syndrome"

B12 deficiency is often misdiagnosed as ME/CFS.

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

Has your GP followed the process outlined in this flowchart?

stichtingb12tekort.nl/weten...

My life became almost unbearable and I had many of the symptoms you describe....so many lost years .

I was labelled with ME/CFS and hypochondria when my body needed a vitamin. If I had listened to GPs I am quite sure that by now I would have dementia and spinal damage. I already had dementia type symptoms and pins and needles in my spine.

My b12 results were mostly between 300 - 500ng/L with no anaemia or macrocytosis (enlarged red blood cells).

"and said my b12 had gone up to 280 so I was fine"

UK B12 guidelines make it clear that patients who are symptomatic for B12 should be treated even if their B12 levels are within normal range so that neurological damage can be avoided. See BMJ and BSH links in my other post.

If that is your GP's attitude I really think you need extra support. In fact it makes me angry on your behalf. I can't bear anyone to go through what I experienced.

You have many symptoms, you are obviously not "fine".

You can get IFA test, MMA, Homocysteine and Active B12 blood tests privately in UK. Results of these tests are likely to be affected if blood taken close to having B12 jabs or supplements.

Do you look carefully at all your blood test results?

Best piece of advice I ever got was to always get copies of all my blood test results. I learnt to do this after being told everything was fine and then finding abnormal and borderline results on the copies.

Mu understanding is that you can also request access to written records as well as online records. You may need to send formal written request to practice manager for this. Online summary may not have copies of letters from specialists. If some tests etc have been during hospital appointments/stays then may need to contact Hospital Records Office to access these.

Some on forum get a complete set of medical records..can be very interesting to see what GPs have written in the past.

Some UK GP surgeries have online access to a summary of results/records.

There can be useful clues on a Full Blood Count (FBC) as to whether iron, folate or B12 deficienies are possibilities.

Do you have recent FBC results? Folate results?

Might be helpful to post them on this thread. Remove any personal details first though.

Help for GPs

1) Perhaps you can persuade your GP to look at section of PAS website for health professionals. It is free for GPs and other health professionals to join PAS.

pernicious-anaemia-society....

2) Some on forum, pass this article " An Update for Medical Professionals: Diagnosis and Treatment "on to their GPs. You will need to be a PAS member to access it.

pernicious-anaemia-society....

B12 Films

b12deficiency.info/films/

Local Guidelines

Some areas of UK may be using local area guidelines for treatment of B12 deficiency that have not been updated for years.

Probably worth tracking down local guidelines for your UK area and comparing them with current national guidelines eg BNF, BSH, NICE CKS etc. BSH guidelines were published in 2014 so if local area guidelines were published before 2014, it's possible they do not reflect current UK thinking on treatment of B12 deficiency.

Try an internet search,

freedom of information request to local NHS website,

request to practice manager for copy of local guidelines(might irritate them though),

ask MP to help find them

Words of Caution

Some GPs find it hard to cope with assertive patients and this may put GP/patient relationship under strain. I always tried to be polite but pressure was put on me to leave one GP surgery.

Have back up plan in case this happens eg another GP surgery to go to.

nhs.uk/common-health-questi...

"I spoke with the doctor again .... not a helpful convo - she didn't even remember why I was calling her "

Have you considered writing a letter instead? See letter writing link in my other post.

liaratsoni profile image
liaratsoni in reply toSleepybunny

Thank you again for the response and resources! I will definitely look into it! I finally got access to my lab results and they are as follows:

- ferritin - 43ug/L (has been 17ug/L for the past few years) (ref range 15-250)

- serum b12 - 280ng/L (has been 215ng/L for the past 3 years at least) (200-900)

- serum folate 11.2 ug/L (2-17)

- total white cell count 2.9 19*9/L (4-11)

- haemoglobin estimation - 128 g/L (115-165)

- RBC count 4.2 10*12/L (3.5-5.5)

- haematocrit 0.39 ratio (0.37-47) (has been 0.37-38 most tests)

- MCV 91.8 fL (75-105)

- MCH 30.4pg (26-35)

- MCHC 331g/L (290-350)

- red blood cell distribution width 11.8% (11-15)

- neutrophil 1.6 10*9/L (2-7.5)

- Lymphocyte 1.1 10*9/L (1-4)

- monocyte 0.1 10*9/L (0.2-0.8)

- percentage hypochromic cells 1.1% (N/A) but has decreased from 3.8% since May

It's good to know that the sudden weird increase doesn't negate the possibility of PA. My mum has vowed we aren't leaving the office tomorrow until they schedule injections because there is zero harm that can come from trying them!

Sleepybunny profile image
Sleepybunny in reply toliaratsoni

Hi,

Do you have the reference ranges for each test? This makes it easier to interpret them.

Normally the ref range will be in brackets after actual results eg serum B12 215ng/L ( ref range 180 - 900 ng/L).

liaratsoni profile image
liaratsoni in reply toSleepybunny

Just updated the post with them :)

Sleepybunny profile image
Sleepybunny in reply toliaratsoni

Hi,

I suspect (I'm not medically trained) that your iron deficiency might be masking the effects of B12 deficiency.

Iron deficiency can lead to microcytosis (small red blood cells) and B12 (and folate) deficiency can lead to macrocytosis (enlarged red blood cells). Someone with both conditions may appear to have normal sized red blood cells as average size will probably be "normal" .

Have you ever had a blood smear/blood film? This is where a sample of blood is examined under a microscope. It might show up the existence of both microcytic and macrocytic cells. Possible to have this privately.

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Will add more if I can think of anything later.

liaratsoni profile image
liaratsoni in reply toSleepybunny

That's very interesting - it would definitely make sense why my red blood cells are averaging as normal but my haemocrit is always on the low side. They also seem to be very connected as they have both been continually low and on the latest test they both increased slightly for the first time in years. I really appreciate all of the info and tests to note down about!

Sleepybunny profile image
Sleepybunny in reply toliaratsoni

Hi,

Another sign of B12 deficiency's effect on blood cells is that the neutrophils (a type of white blood cell) may become hypersegmented. A blood smear/film would hopefully show up any hypersegmented neutrophils.

B12 deficiency can lead to reduction in one or more types of blood cells (cytopenia).

sciencedirect.com/topics/bi...

casereports.bmj.com/content...

liaratsoni profile image
liaratsoni in reply toSleepybunny

Thank you again! I have only had the recurring neutropenia since I was first found to have iron deficiency/low b12 so again there seems to be a connection. If I might ask how did you get a doctor to finally diagnose your pernicious anemia? I see from your posts you had to fight for it! Do you have any theories to why my b12 went up to 280 so suddenly? I have seen that b12 levels can fluctuate and previously my b12 has been tested at very long intervals whereas this time it was retested only a month after the level was 215 in may - but I wasn't sure if this was true especially in pernicious anemia/b12 deficiency. My intake of b12 rich foods has not changed and I have been eating the highest b12 meats and fish including mackerel (700% of your b12 daily value) and tuna every day but I have been doing that for the past six months. The only other thing I could think is that its been only this past month that I have been barely able to eat and so I am consuming the meat/fish alongside a handful of mushy veg rather than a full (yet small) meal so I was wondering if the lack of other foods to digest means my low stomach acid has been able to extract slightly more b12/iron from the food due to a lesser load but this is me just taking a stab in the dark.

Sleepybunny profile image
Sleepybunny in reply toliaratsoni

Hi,

I don't have a PA diagnosis. My IFA result was negative, but GPs eventually accepted that my symptoms were typical of B12 deficiency. I had to move to a different GP surgery though.

Are you on a general vitamin supplement? A small amount of B12 from supplements will probably reach blood through passive diffusion even in someone who has a gut issue that affects absorption.

liaratsoni profile image
liaratsoni in reply toSleepybunny

I see! Do you receive injections from your new practice? As far as I am aware I haven't taken a b12 supplement which is why I am finding it so strange. The only supplement I have started this past month was the vitamin d.

deniseinmilden profile image
deniseinmilden

You poor darling! Well done you on getting so much research done and trying so hard to look after yourself. You have some great answers already to which I have little to add other than that now you have found this group you will never be alone in your fight again - there's always someone here to help you.

Lots of us self inject (SI) to good effect because we can't get the treatment levels we require from the health service.

Lots of people find that they need lots of other things besides the B12 injections so a broad spectrum multivitamin and mineral supplement plus extra folate is a good place to start, with potassium and magnesium as well as your iron and vitamin D being the main ones to be additionally aware of.

Whether you get an official PA diagnosis or not, your B12 deficiency will need to be treated and probably at quite a high level for a long time to heal the damage so far sustained.

It would be good to ask for a referral to an iron anaemia specialist to help you with this and someone who can help with what definitely sounds like low/no stomach acid (achloridia). You need stomach acid to absorb iron so this may be that problem too.

I have malabsorption problems and have found that BetterYou now do a range of mouth sprays, including an Iron daily oral spray and a D3 and K2 spray which help. They are a tad expensive and are relatively low dose so won't cure a major problem but at least do help and are available online and in health food stores.

Good luck and let us know how you get on. Please ask more questions as you need to.

liaratsoni profile image
liaratsoni in reply todeniseinmilden

Thank you for the overwhelmingly kind and informative response! The info on the multivitamins is particularly helpful! I have seen there are other forms of iron supplementation too as presently the oral route seems to be ineffective and is def a no go with my reflux at the moment and I think I need a pretty high dose to start so i amy ask about that. Would the iron anemia specialist be a hematologist/something to ask mine about as I am currently seeing one routinely and have my next appointment on wednesday. Also do you know if the achloridia is something to ask the doctor about or the hematologist? Again thank you for the help!

deniseinmilden profile image
deniseinmilden

As every health region is different with some better specialists in some areas to others all I can do is recommend is you speak to your Dr and/or haematologist and ask their recommendation if you trust them.

You may find a gastroenterologist with a specialism in iron anaemia - I know there's one at Addenbrookes in Cambridge, for instance.

Most consultants are affiliated to a local large hospital which may list them with their areas of expertise/interest if you do a search on the hospital.

Alternatively you could do some searches under something like "medical consultants specialising in...." and it should give you some options.

Some people manage to get recommendations from others on here by asking in a specific post. I'm not sure if it is allowed to publicly name Drs but people can private message you.

I hope you find the right help.

liaratsoni profile image
liaratsoni in reply todeniseinmilden

Thank you so much! I will look into it! :)

Sleepybunny profile image
Sleepybunny

Hi,

"I want to make sure that this time around I am finally taken seriously"

I strongly recommend that you join and talk to PAS if you suspect PA. PAS tel no in my post above.

Costs about £20 for a year's basic membership.

pernicious-anaemia-society....

PA diagnosis can take a very long time, some people wait over a decade by which time there may well be some permanent damage. PA and B12 deficiency from other causes is not always well understood by GPs and specialist doctors.

I suggest putting queries about treatment/diagnosis into a letter to GP. In UK, my understanding is that letters to GPs are filed with medical notes so are therefore less likely in my opinion to be ignored than info passed on verbally or on photocopies.

As you have neuro symptoms, has GP referred you to ...

a neurologist?

If you see a neurologist, ask them to check your proprioception sense (awareness of the body in space). Problems with proprioception are often associated with B12 deficiency.

Two tests that check proprioception are

1) Romberg test

2) Walking heel to toe with eyes closed

Videos of these tests are available on Youtube. If neurologist does not do any test with patient's eyes closed then it's likely that proprioception sense has not been fully tested. These tests should only be carried out by a doctor at medical premises due to risk of loss of balance.

a haematologist?

NICE CKS link in post above suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms

If you have gut symptoms, has GP referred you to

a gastro enterologist?

Gastro specialist should be able to spot signs of gut damage due to PA, Coeliac, H Pylori etc.

I have in past requested referrals in a brief, polite letter to GP along with evidence that supports requests eg symptoms, tets results, medical history , extracts from B12 documents etc. GP does not have to agree to request.

"I am hoping that the worsening symptoms despite a b12 rich diet are enough to convince them to give me injections "

Worth writing down a typical weekly diet so GP can see you are eating plenty of B12 rich foods. I think it's important to provide as much evidence as possible.

Link that mentions hypochlorydia (low stomach acid).

drmyhill.co.uk/wiki/hypochl...

Low stomach acid often gets misdiagnosed as high stomach acid as the symptoms are very similar.

Have you ever been put on PPI drugs? These can be associated with B12 deficiency.

pulsetoday.co.uk/clinical/c...

Films about B12 deficiency

b12deficiency.info/films/

Help for GPs

PAS website has section for health professionals. It is free for them to join.

pernicious-anaemia-society....

pvanderaa profile image
pvanderaa

For gut issues, have you tried going gluten and dairy free. It is hard to do both but the casein protein in milk, butter, yogurt, ice cream and all whey products such as protein bars etc., is very similar to gluten. Gluten is wheat, barley, rye. So any bread, cake, beer and such is out.

There are some good gluten free products. Bread is better toasted in my opinion.

Any allergies already diagnosed?

liaratsoni profile image
liaratsoni in reply topvanderaa

I have already been gluten and dairy free for over a year due to my PCOS. As far as I am aware the only allergy I have is kiwi.

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