Awaiting PA test

I'm not medically qualified and I can't remember if I've asked elsewhere but are you taking additional Folic Acid as this is essential to process the B12.

If you are unable to absorb B12 naturally from food for reasons (being vegan or vegetarian etc) other that those which cause Pernicious Anaemia then your nurse is right, you will need injections for life, but is she just guessing at the cause of your deficiency?

It seems some of your symptoms have eased somewhat to be replaced by others notably the tinnitus which is a well known symptom of B12 deficiency and P.A.  However I think you should make a list of your symptoms and present them to your doctor to see whether he will allow you more frequent injections than the "one size fits all" three months.

Thank you Clivealive, yes ironically I have been taking folic acid for nearly 2 months now, due to myself and my partner trying for a baby! My Dr advised to take it while trying to conceive (before the b12 deficiency was picked up)

Yes I will definitley mention my symptoms when I speak to my GP this afternoon. Also, yes I believe the nurse was guessing at the cause of deficiency as no results back yet...

And of course should you joyfully conceive you will need to have high levels of B12 so the baby is not affected as per the bottom line of this list:

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described  in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

Had you long term been on the contraceptive pill previously as these can adversely affect B12 absorption?

I do hope everything goes well for you and your partner

Thank you Clivealive for that information. I had the mirena coil for 4 years, so not the contraceptive pill.

I have just got off the phone to my GP surgery and the receptionist informed me there is no record of the nurse ever taking blood 2 weeks ago for the PA test! She did not record that she had done so not quite sure what to do now. The receptionist just said to wait and see till end of the week if the lab sends results! really just wanted to know for sure

O how distressing and inefficient of your surgery.  You really do need to get things confirmed one way or another.

You said originally 19 days ago your doctor said "I had a B12 deficiency as my level was 179 and that I would need to start the injections ASAP. So I am booked in every other day for two weeks, then every 3 months. He then said I need to come back in for another blood test, as he wants to check for P.A . This is being done tomorrow."

I suggest you ask you doctor for this to be done again as you also said "I have also discovered that my nan has PA and has injections every 3 months." Apparently 15% of patients with P.A. report a grandparent having had it.

However Louise7777 please don't despair there is life after P.A. - I've had it for nearly 45 years and I'm still "clivealive" at the age of 75 

Thank you Clive, my GP surgery called me back yesterday and confirmed the lab never received my blood sample, so I went back in this morning and had blood taken again, so fingers crossed I am on the route to discovery again

I think I am more pressing for the PA results because I would like to know more information with regards to it effecting me becoming pregnant. Do you know if P.A effects conception/pregnancy? or would it just be the same kind of pregnancy if I was just B12 deficient as such? However, as I am not vegan or vegetarian, I do think PA is the cause, but we shall wait and see!

Hi Louise

I am sure it was my low B12/iron that stopped me carrying my pregnancies beyond the first few weeks.  All your organs are affected and with low iron if I understand correctly oxygen was not getting round fast enough.  Hence confusion and I couldnt lift my arms up above my head to shampoo without them aching.  If the correct amount of oxygenated blood is not getting to the uterus it stands to reason a pregnancy might struggle to be supported.  I lost about 3 pregnancies.  Luckily I have two lovely boys already.

I'm sorry I cannot comment on P.A. and it's affect on pregnancy other  than if your B12 levels are low the child might also have low B12.  If you look at my previous comment on who is at risk of B12 Deficiency it listed:

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

So it would be good to be aware.  Hopefully someone more qualified will be able to help.

The problem with keeping one's fingers crossed is that it makes typing difficult  but I hope things work out well for you.

 

Hi Debby, thats awful for you Im so sorry. I have 2 lovely girls already so if it's not meant to be, it's not meant to be

Haha thank you Clive I will of course keep you posted on an updates I have! We are off to Madeira in a couple of weeks, just hoping my loading shots tide me over till then! I still feel ok at the moment, and my skin is settling down!

Having just re-read through this post I wonder whether your "forehead/cheeks/chin have come out in spots (almost like a rash?)" symptoms could be an allergic reaction to the base of the Hydroxocobalamin B12 injections you were having. 

I had a similar reaction after having been on cyanocobalamin for fifteen or so years when I was put on hydroxo in the 1980s and so was put back on cyano as I am today.

Just a thought.

Hi Louise, first of all I am so very sorry to hear that you lost your twins, how heartbreaking for you. I am not too sure how Low B12 impacts on pregnancy, but it could be a good idea to contact The Pernicious Anaemia Society for more advice. I don't think 390 is a particularly good result, but is within current guidelines for the UK. In some countries anything below 500 is considered low. I would imagine that being pregnant would put additional demands on your body's supply of B12, along with all the other nutrients growing babies need.

My initial level at diagnosis was 176, and my GP thought I should feel well at a level of 400. I didn't! It seems I needed much more frequent injections than the three monthly ones regularly prescribed by the NHS. I have persuaded my GP to give me six weekly injections, and that is helping a lot. 

Did you get your ferritin and folate levels tested too, as these need to be good, in order for the B12 in your blood to be used?

I have just looked back over your earlier messages and can see you were on folic acid for the pregnancy.

I really don't know that I can advise you any further, but feel that a level of 390 is probably not high enough to support a pregnancy. Please ask the Pernicious Anaemia Society for more detailed info on low B12 and pregnancy.

I really wish you well, and hope that you will get more help.

from Marion x

I'm not medically qualified but I would say that after loading shots in August and a three monthly one I would expect you level to be much higher than 390.

Are you supplementing with Folic Acid as this is essential to process the B12?

What symptoms are you still having?

So sorry to read about your babies

thank you for your kind words Marion x No I do not believe I had folate/ferritin level checked, what would this show up as on a blood test? xx

Hi Clive, still having pins and needles and numbness, brain fog and out of breath after one flight of stairs at work, recurrent headaches.

No I had stopped the folic acid when I lost the pregnancy, I will start this up again though. I do not feel half as awful as I did when my level was 179, but I was hoping my level would be a big fat 600+!

I guess I am just confused as PA was negative so I do not understand what is causing this, I eat so much meat etc x

Thank you Clive x

Hi Louise, 

Yes, they can be tested for in a blood test. You are entitled to ask your GP for copies of blood test results to see if they have been checked in earlier tests. Sometimes GP surgeries ask for a small payment to cover printing costs for these copies.

From your reply to Clive, it sounds as though you still have many symptoms of Low B12. Just because the parietal antibody test showed nothing, it doesn't mean that you don't have Pernicious Anaemia. These tests are notoriously unreliable. The founder of the Pernicious Anaemia Society, Martin Hooper, had several negative tests before he got a positive result. All the while his health was deteriorating. 

Persue the GP for copies of your blood tests, and see what has actually been checked and the results. Have you ever had your thyroid function checked? This can go hand in hand with low B12.

very best wishes Marion x

As Marion says the Intrinsic Factor and Parietal Cell antibodies test is notoriously unreliable by upwards of 50% so a negative result doesn't necessarily mean that you don't have P.A.

In 1968 the old "Schilling" test was supposed to be more reliable but even with that I had to take an "unheard of" second one in 1972, four years after the first, before I got my P.A. diagnosis.

I can only suggset that in view of the family history and you current symptoms that you "plead" with you doctor to give you a "trial" of B12 injections to see if there is any improvement.  You can't overdose on it and it must be a lot cheaper than many of the medications they try to throw at us which in themselves often cause malabsorption of B12.

My heart goes out to you.

Hi Louise

You mention struggling to climb stairs. Have they checked your heart?

I have a pacemaker so recall the exhaustion.

Deb