It all started 2 years ago, I became very breathless it seemed overnight, I noticed small things like climbing the stairs, couldn't seem to catch my breath, I was a very fit 42 year old female..., now, very tired hard working struggling 44 year old woman not over weight, nothing would fase me until suddenly this happened to me, I went to the doctors who ran a load of tests, they told me my b12 levels were very low I would need injections of b12 to get me back on track, they did another blood test to see if I was pa, this came back negative, I also have bad dioreah, they thought it may be related to crohn's, I had a rear camera found that my valve was open between my small and large intestine but nothing else ...that specialist did more blood tests and said that I tested positive for pa.. I am very foggy, forgetful, confused and breathless it seems like when I breath I am not getting enough oxygen in and I want to breath deeper.. I also get a creeping feeling in my back to the left by my rib cage, I have injections every 6 weeks, my doctor has sent me to a lung specialist because of my breathlessness, had scans, they find nothing wrong, my doctor will not agree that my pa is connected to any of my symptoms... the doctor says that the amount of injections I have I should be overdosed on it, but I still feel crap... do I need the injections more often, back in the summer may, June and beginning of July I felt quite good I had a couple of injections quite close together, this last 3 weeks I feel very breathless and foggy I had a injection last week but have not yet felt the benefit from it....
Hello glad I have found this site... - Pernicious Anaemi...
Hello glad I have found this site...
Hi Metro,
Welcome here! Am sorry you are diagnosed with PA, but well treated PA should not be hard to live with. If you are not doing well on current treatment then it should be investigated as to why not. It could mean that you now have also become folate and or iron def, or possibly have thyroid problems etc. so your GP should run further tests to eliminate other possible cause for still not doing well.
I always feel that being breathless is more a sign of iron def in my case, but we all are different, so tests would be useful.
I hope this helps,
Kind regards,
Marre.
I have been tested for iron, that was ok and my thyroid was normal..
Do you have the results of your iron and Thyroid - with ranges. Sadly what Docs call normal often isn't. Did they test just the TSH for your thyroid - sadly that only tells you part of the story.... a much fuller profile is required to rule out a thyroid condition. Happy to help 
All my thyroid function tests were in range/normal - but the anti-bodies were HIGH - and so I was diagnosed..... Low B12 - Ferritin - Folate - Iron - VitD are very often LOW in thyroid cases and they all need to be at the TOP of their ranges for you to feel well. Ferritin needs to be around 80/90.
is there a clinic or specialist unit or someone apart from the gp's who understand the illness that we can go to.? my gp told me that I should not read the internet as breathless and foggy head cant think clearly are not connected to b12 so why does every one else seem to suffer from the same with b12 deficiency ..?
Typical clueless doctor I'm afraid. Breathlessness, foggy head, inability to concentrate and memory loss are all typical symptoms of B12 deficiency. Some doctors don't like the internet as it enables us to do our own research and challenge their authority.
A haematologist knows far more about PA than a GP, you could ask to be referred to one if you find no obvious reasons for not doing well after you have seen the copies of your blood tests, and can see serum folate and or ferritin have or not been tested and what the result are etc.
See a different doctor. I was breathless when I walked a very short distance, and I ended up in hospital. My hemoglobin level was 4.4. The breathless is a symptom and you need to be treated for it straight away. All the symptoms that you have, I had as well. I ended up in a&e as I was very close to passing out.
HOW, HOW CAN I BE TREATED FOR BREATHLESSNESS, I HAVE A VERY HANDS ON JOB AS A RECEPTIONIST, UNDER PRESSURE I GET VERY CONFUSED, FOGGY HEADED,I CONSTANTLY FEEL THE NEED TO BREATH VERY DEEP ALL THE TIME DOING NOTHING, JUST NEED THE OXYGEN.. THEY SAY ALL MY BLOOD TESTS ARE NORMAL FOR EVERYTHING EXCEPT POSSITIVE PA AND B12 DEF.... HELP....
You are entitled to have copies of all your results - so it may be worth asking for them and posting your results with ranges. People will be able to help you even more....
Are you taking Folic Acid and a good B Complex with your B12 injections. FA and B12 work together in the body....
NO JUST INJECTIONS, MY DOCTOR HAS A 2 MONTH WAITING LIST, IF YOUR ILL YOU GET TO SEE A LOCUM.. THE NURSES GIVE THE INJECTIONS, I HAVE TO MAKE THE APPOINTMENT FOR NEXT INJECTION WHEN I AM RECIEVING INJECTION.. I WILL MAKE APPOINTMENT TO GET SOME RESULTS, MAY TAKE A LITTLE TIME THOUGH...
Maybe treat yourself with a GOOD B Complex and Folic Acid...
b12deficiency.info/signs-an...
Lots of information in the above link - hope it is helpful....
Also I had low b12 levels and low folic acid.
as I said I have b12 injections every 6 weeks, my b12 level is 453 now and my folate is 7.0 which she said is normal the range is 4.6-18.7
B12 and folate look OK, any results re ferritin (=iron storage) ? And any thyroid test results?
IAM GETTING THEM ALL POSTED TO ME AS SOON AS I KNOW I WILL POST THEM..
JUST WANDERING IF I CANT ABSORB B12, WILL I BE ABLE TO ABSORB OTHER VITAMINS THAT OTHERS SAY GO HAND IN HAND IF I TOOK FOLATE ACID AN B COMPLEX AND WHAT SHOULD I TAKE?
Hi Metro,
Good you are getting copies, hope it will shed some light on your symptoms.
B12 specifically needs to be connected to IF and then goes trough a process that involves R binders that then release the B12 from the IF to then be taken up say (a lot more involved but to complicated to explain). Other vitamins do not need that process so can be taken orally. Although the PH (stomach acidity) can alter uptake, iron needs a certain PH to be taken up, to explain it very simple. So many vitamins need each other to be metabolised and ideally all are in balance. If you take a lot of only one vitamin you will upset the balance and it will not help, its best to stay reasonably balanced. That is why a multi vitamin is good as it does not unbalance things to much. Hope this makes sense to you,
Kind regards,
Marre.
I HAVE A COPIES OF MY TESTS: 1.11.2012.... TOTAL WHITE CELL COUNT ; 6.9 10*9/L (4-11)
RED BLOOD CELL (RBC) COUNT 3.87 10*12/L (3.8-5.8)
HAEMOGLOBIN EST 13.5 G/DL 11.0-16.0
HAEMATOCRIT 0.396 0.36-0.47
MCV 102.4FL 76-100
MCH 34.9PG 27.0-34.0
RED BLOOD CELL WIDTH 13.3% 11-16
PLATELET COUNT 190 150-400
NEUTROPHIL COUNT 4.4 2-7.5
LYMPHOCYTE 2 1.0-4.0
MONOCYTE 0.3 0.2-1.0
EOSINOPHIL COUNT 0.2 0.7
BASOPHIL 0 0.2
SERUM BI2 130 NG/L 200-950
SERUM FOLATE 5 UG/ L 4.6-18.7
SERUM VIT D 17.4.2013 I HAVE NOT BEEN ASKED TO DO ANOTHER TEST NOT TAKING TABLETS NOW
26 NMO1/L DEFICIENCY -25 NMO1/L
INSUFFICIENCY 25.0 - 49.9 NMO1/L
ADEQUATE 50.0 - 74.9 NMO1/L
OPTIMAL 75.0 - 249.9 NMO1/L
TOTAL WHITE CELL COUNT ; 5.6 10*9/L 4 - 11
RED BLOOD CELL (RBC) COUNT 4.21 10*12/L 3.8 - 5.8
HAEMOGLOBIN EST 139 G/L 110 - 160
HAEMATOCRIT 0.408 0.36-0.47
MCV 96.9FL 76-100
MCH 33PG 27.0-34.0
RED BLOOD CELL WIDTH 12.5% 11-16
PLATELET COUNT 164 150-400
NEUTROPHIL COUNT 3 2-7.5
LYMPHOCYTE 1.9 1.0-4.0
MONOCYTE 0.4 0.2-1.0
EOSINOPHIL COUNT 0.2 0.7
BASOPHIL 0 0.2
SERUM BI2 1379 NG/L 200-950 NOTED VERY HIGH DUE TO 6 WEEK INJECTIONS,
10.6.2014
CLINICAL DETAILS: B12 DEFICIENCY P/A DUE TO GASTERIC PARIETAL CELLS ARE POSSITIVE.. ALSO IRRITABLE BOWEL SYNDROME
I DONT KNOW WHAT THIS IS 18.6.13 BLOOD LEAD LEVEL
0.64 UMO1/L
NORMAL VALUES ALL AGES 0.48 UMO1/L
OCC CERT LIMIT FOR WOMAN OF PRODUCTIVECAPCITY 1.45 UMO1/L
Hi Metro,
Re: "BLOOD LEAD LEVEL 0.64 UMO1/L", looks like its a bit to high, do you live/work in an environment that can cause high levels of lead (some paints do etc) ?
Your blood tests look typical of a person who was B12 def/ PA, and then treatment got your serum B12 up to SERUM BI2 1379 NG/L 200-950, but now its dropped to: " my b12 level is 453 now and my folate is 7.0 ", but you have no other results of that latest blood test, showing if your MCV has gone down etc? No results of HB and or ferritin that go with your latest result re my b12 level is 453 now and my folate is 7.0 ?
It could be that you have become iron def during treatment, but that would only show as low MCV and or low HB/ low ferritin if tested. Your serum folate was not very high in 1.11.2012, taking a good multi vitamin may well help you, and can not do any harm.
Being positive for Parietal cell antibodies can mean your stomach acidity is going down, which can mean destruction of IF, but also uptake of vitamins and minerals such as iron will get less and you could now have become iron def. It is difficult to tell as you do not seem to have full results from your latest blood test? Also being positive for parietal cell antibodies is not definitive for PA, see:
bcshguidelines.com/document...
"(b) Gastric anti-parietal cell antibody
Gastric parietal cell antibodies (GPC antibodies) have a low specificity for the presence of pernicious anaemia since, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals. Positive gastric parietal cell antibodies may cause gastric acid achlorhydria and progression to pernicious anaemia may occur. However, a positive GPC antibody test is not definitive for pernicious anaemia (Khan, et al 2009)."
Some info here on lead poisoning, see:
labtestsonline.org.uk/under...
"For diagnosis: The test can help determine whether symptoms, including fatigue, stomach pains, changes in mood, nausea, headache, tremors, weight loss or decreased libido are due to lead poisoning. The test may also be needed if a patient has peripheral neuropathy, anaemia, reproductive failure, encephalopathy, or memory loss, which are symptoms of lead poisoning. In children the symptoms of chronic lead poisoning are slightly different and they are more likely to present with, for example, developmental delay."
I hope this helps; have you had any tests re the IBS? Seen a gastro? It would be worthwhile to eliminate other possible problems, besides confirming gastric acid achlorhydria (low stomach acidity).
Kind regards,
Marre.
IT WAS A GASTRO THAT DIAGNOSED MY PA AND IBS NOT MY GP... I HAVE POSTED ABOVE TWO BLOOD TESTS THE FIRST WAS WHEN I WAS DIAGNOSED, THE 2ND IS MY LATEST..
I just do not understand this post you made:
metro100
3 days agometro100
as I said I have b12 injections every 6 weeks, my b12 level is 453 now and my folate is 7.0 which she said is normal the range is 4.6-18.7
Your latest blood test result still shows high MCV, re:MCV 96.9FL 76-100, there seems to be no serum folate and as the previous test show low, re:SERUM FOLATE 5 UG/ L 4.6-18.7, you may now be folate def, but that does not show in the result you gave 3 days ago so I am baffled!!
Kind regards,
Marre.
SORRY ABOUT THAT WHEN I ASKED THE NURSE FOR MY LATEST RESULTS THIS IS WHAT SHE TOLD ME THEY WERE, WHEN I RECIEVED ALL MY NOTES I POSTED THE FIRST LOT OF TEST RESULTS AND THE LAST THAT I COULD SEE, I WILL HAVE TO LOOK FOR SERUM FOLATE, WHAT IS MCV.. THANKS FOR LOOKING SORRY THAT I HAVE CONFUSED THE ISSUE..
Not a problem, now I understand. MCV is the size of your blood cells, the size can change , if you are iron def they become to small, if you are B12 and or folate def they become to large, but if all 3 (iron/ folate and or B12 def) the MCV can be normal. There are other possible reasons for high MCV; see:
patient.co.uk/doctor/full-b...
"•Anaemia with low MCV (microcytic): •Iron-deficiency anaemia - look at serum ferritin level.
•Anaemia of chronic disorders.
•Alpha/beta thalassaemia.
•Anaemia with normal MCV (normocytic): •Recent bleeding.
•Anaemia of chronic disease (including renal disease).
•Combined iron and B12/folate deficiency.
•Most non-haematinic deficiency causes.
•Anaemia with high MCV (macrocytic): •Folate or B12 deficiency.
•Hypothyroidism.
•Haemolytic anaemia.
•Liver disease.
•Alcohol excess.
•Marrow dysplasia and failure syndromes.
•Secondary to anti-metabolite drug therapy - eg, hydroxyurea.
•Aplastic anaemia.
•Sideroblastic anaemia (can also be microcytic)."
And :
Macrocytosis and Macrocytic Anaemia
patient.co.uk/doctor/Macroc...
I hope this helps, it looks to me up till now that you could have become folate def, but its best not to speculate and see what your serum folate was on your last blood test, if no result you could ask for it to be tested perhaps, and ferritin would be good, if they will do it.
Kind regards,
Marre.
Should I have been tested for PA before starting loading doses?
I have ALL of the symptoms of PA and it is ruining my life. My GPs won't look further.
B12 Levels How quick can they fall?
I now don’t know where to turn !!
After 25 years they have stopped my B12 - what can I do?
