Pernicious Anaemia

I haven't always known about this condition as it was only diagnosed a couple of years ago. However, I didn't really let it figure much in my mind simply because I didn't realise just how much of a difference it could have on my life. I still have so many unanswered questions and I suppose I'm frustrated in the lack of information I've been given for it.

Some of the symptoms I have suffered mimic IBS, a condition which I've been kind of diagnosed with, other symptoms seem to have no connection with IBS and the rest could be attributed to pernicious anaemia.

So, here's my story...

Pernicious anemia (also known as 'Biermers anemia, Addison's anemia, or Addison-Biermer anemia') is a form of megaloblastic anemia due to vitamin B12 deficiency, caused by impaired absorption of Vitamin B-12 due to the absence of intrinsic factor in the setting of atrophic gastritis, and more specifically of loss of gastric parietal cells.

I've suffered from Gastric problems since I was the age of 19. No one has yet given me a confirmed diagnosis but due to the never ending tests I've had to endure, one thing did become apparent.

Due to a lack of a very important chemical in my stomach (intrinsic factor) I am unable to absorb Vitamin B12. I have come to realise that this could be the reason for so many of my unusual symptoms that couldn't be attributed to anything else. It also proves that there is usually an answer for everything and if you're not entirely happy with a diagnosis please do not be afraid to seek a second opinion.

The symptoms I've been suffering from now make sense though there are still questions I would like answered. Most of the information I have received about this condition has come from the Internet as I've been researching for this lens! It's not a way I would have liked to have obtained the information preferring to have received it from the gastroenterologist who made the diagnosis or the GP who prescribes the injections.

For now, I have to make endless trips to the GP for regular injections of B12 in my upper arm. I would like to find out if it's something I can do myself as it would help a lot. I know that learning to do this is going to be hard but I'm sure I can work it out.

When I decided enough was enough and I was going to do something about this problem because the symptoms were becoming problematic, in the first stages of treatment (I'm currently receiving those that are highlighted in Bold):

1 - I've had to receive an injection once every 3 days,
2 - moving on to 3 times a month
3 - and then to every 3 months
4 - Changed to every two months

Well, after asking the GP again what is happening with my injections, I finally received an answer that shut me up! He gave me the answer but not before saying to me, "I thought we'd already talked about this."
Err, no, you didn't. Well, not to me at any rate. Perhaps he thought I was in the room at the time when he consulted with the other GP. Anyway, I have to ring him in the middle of Feb (this month) to get another blood count test for Vitamin B12 done. Then, hopefully, my injections will start on the 1st March every 3 months. Yay! Result...

18th January 2009

Well, things aren't going well for me at the moment. After that decision to stop my injections by the Nurse, I'm still waiting for the GP to get in touch with me regarding when I can start them again. Meanwhile, I'm getting sicker and sicker...It really makes me angry that people have the power to muck about with other people's health and life just because they feel I don't need treatment. What happened to listening to your patients?

I visited the GP yesterday for my Blood test results. My Vitamin B12 count is within normal range (something like 190 which to me is still bordering on low considering the highest it can be is 900) so, he's going to go through my notes and work out when and how often I should have my vitamin B12 injections. It's looking like it could be once every 3 months. He's the only GP that has even bothered to let me look at my results...

I asked if it was possible for me to inject myself at home but it's not looking like I can; too many complications apparently like disposal of the needles and storage etc. so I'm just going to have to remember to make the appointments and attend!

I also asked if it qualified me for the Flu vaccination which it doesn't. Damn! ;)

I am, at present, absolutely livid with the Nurse who decided to stop my injections just before Christmas.

At the time, it seemed like she was doing a good thing but the backlash from that decision has been awful.

As I've still not received any injections since that appointment, I'm now suffering physically. All the usual symptoms of mouth ulcers, pain, fatigue have come back ten-fold and I'm miserable as hell. I'm going through my anti-diarrhoea pills at an alarming rate and it can only be connected to the stop in my treatment.

Yes, my blood count for Vitamin B12 was within normal range but, to me, it wasn't high enough. As a sensitive person, it doesn't take much of a drop in normal levels of anything for me to feel the effects.

So, I'll be back on the phone to the GP first thing Monday morning for an appointment.

My experience with my GP has been less than beneficial.

At the moment, he insists on not informing me about my condition and labeling the deficiency as a problem with IBS.

As I have an interest in all things medical I like to consider myself as slightly more informed than most, but, saying that, I do tend to place a lot of faith in my doctor as I believe most people do.



Okay, PA is not considered as dangerous as Diabetes or other blood related conditions if it wasn't managed correctly BUT it does need monitoring and it does need to be controlled.

Would he care if I missed a dose or three?
Would anyone ring me up to inform me that I'd missed an appointment for an injection?
Would that fact that I've been diagnosed with PA be taken into consideration for any symptoms that I may experience?

So far, in my experience, my 'IBS' symptoms can be easily explained by the problems I have absorbing Vitamin B12.

So, if you have PA, ask yourself:

If you didn't have PA, would you still experience symptoms of IBS?

For many years, I have disputed the fact that I have IBS. My symptoms just didn't fit. They also didn't occur at times when they should have occurred if I had IBS. There was always a niggling doubt in the back of my mind.

I'm even more convinced now that I do not have IBS.

All my IBS symptoms can be contributed to PA (see Symptoms of PA below.)

Due to my late diagnosis I may have nerve damage already but the list below explains a lot to me.

Symptoms of pernicious anaemia that could be attributed to IBS which I suffer from:
Nausea and vomiting
A sense of fullness
Gas or Wind
Heartburn
Constipation
Diarrhoea
Weight loss/weight gain.
Mouth Ulcers
Fatigue - Every day I would need to sleep for several hours. This has lessened since I started treatment.
Fungal infection on my scalp
Eczema in my ears (legacy of measles when I was 7) and in my genitals

Unusual symptoms which I couldn't figure out and were too small to consider bothering the GP with:
Memory loss
Confusion - I've always put this down to my Depression but...?
Depression - I have both Clinical Depression and Dysthymia.
Tingling or numbness in the hands and feet - Signs of nerve damage.
Dizziness when standing up - This couldn't be attributed to Low Blood Pressure because mine is normal. I used to have bad dizziness on standing up when I was 16. I occasionally get it now.

Symptoms I suffer from but I'm unsure if they can be attributed to PA or not:
Stinging sensations in my joints particularly my fingers.
I can sometimes suffer from bad bruising in odd places e.g. In the top part of my foot where there is a layer of hard skin, or in my finger joints.
A strange rash on the tops of my feet.

Here is a list of some Pernicious Anaemia Support Groups that you can find on the Internet:

Anemia Support Group - A community of patients, family members and friends dedicated to dealing with Anemia, together.

Pernicious Anemia - Not so much a support group but a wealth of information for sufferers of PA. I may just join this website :)

Only last night I joined The Pernicious Anaemia Society simply because I felt I needed the support and the information that this Society can provide.

It has a forum which I will be using, at the moment, to browse. I'm not a great user of forums mainly because I'm way too sensitive (I'm a HSP) and I'm too easily offended so I tend to steer clear of making regular postings.

I occasionally post in SquidU but you may have noticed I don't take part in heated discussions or debates. It's a problem I have and I know it may be seen as standoffish but there is a really good reason for it :)

I shall be using the forums at TPAS for information and to find out how this condition affects other people's lives and if there are similarities to my experiences.

Unless you've been taught how to inject yourself with Vitamin B12, the Nurse is the person you will be seeing on a regular basis.

I hope that the Nurse you see is a caring, sympathetic person who listens to every word you say. Bitter, much? ;)

For me, a change of Nurse, set a process in progress which could be a problem for me coming up to a Holiday break. After asking a lot of questions which she didn't listen to the answers to, she decided that she was not going to give me an injection that week (she threw away the vial after opening it; what a waste!) and consulted with the GP as to when and how many times I should be receiving the injections.

Note: I was diagnosed approximately 2 years ago but have not been treated for PA for those 2 years so, in effect, my treatment has not been progressing for that amount of time.

Okay, this is good, in a way, but I am a little bit annoyed as I've been, now, without my vitamin B12 for one week. I shall be seeing the GP next week which will be another week without it. Already I can feel the affects of that missed dose; only 2 weeks ago from my last appointment I'd missed a dose and felt the effects immediately. This says to me that I should be still having weekly injections of this Vitamin B12 as my stores are still depleted. The Nurse stated herself that she thought I looked 'pasty'; err yes, I'm Anaemic!

When I initially went into to see her and she was convinced I hadn't seen her before, yet didn't really want to hear my thoughts on the subject that I had, in fact, seen her once before. She also asked me why I was seeing her, so I told her I needed a Vitamin B12 injection. She asked, 'What it was for' and I said PA.

She then said, yes I know what PA is...so why, then, did you ask me what I was wanting the Vitamin B12 for?

This is my experience of one of the nurses currently registered at my GP practice and I can quite happily say I will be asking not to see her again.