Pernicious Anaemia Society

[jlchrispin]

Although newly diagnosed, I believe my symptoms started around 15 years ago just after I had my second Child. Mainly bowel problems to start with.

I have been to the doctors on several occasions over the passed 15 years complaining of joint pain and Stomach problems which they duly diagnosed as IBS (and the pains were in my head and not really there). The past two years the 'IBS' has been so bad, that I have had to stop on the hard shoulder while out in the car to go to the loo on several occasions.

The worst came in December, when after eating nuts, they went through me within 20 mins and came out the otherside (as bad as this sounds) like I was weeing from my bum!!

The doctors did a blood test to check I didnt have any allergy to nuts (as this is the only test they could do). This came back clear. I then went and saw another doctor who referred me to a hospital. He gave me two choices and I chose the earliest appointment.

Finally, I thought, I am going to get this sorted. I was asked to go and have full bloods done in time for the appointment (February 2010). The date came and I went along to the appointment. It was a nurse led system where the nurse talks to you, asks you to leave the room, sees the consultant and then lets you know what the specialist has suggested. The nurse was so rude (I know I am overweight - I am not blind) all she kept telling me was to eat healthy. Most of the things she was telling me to eat upset my stomach, and when I told her she stated that I must have them in my diet to ensure a healthy system. My diet is reasonably good but when you are tired all the time, cooking is the last thing on your mind. her response was we are all busy, but all have time to eat healthy - all the comments were about being over weight. I asked about my blood tests and she breezed over them and said "oh, you B12 is low, but that could be a one off - you need to eat more protein". At the end, I was so upset, that I left in tears. AS soon as I could I rang my doctor who told me that I should follow it up with a complaint as this was completely wrong and I shouldnt have been treated like that. At the same time, he booked me another appointment for April 23rd with another consultant who 'was the best'. I went along to this appointment and someone actually felt my stomach to see if there was any problems. I mentioned to him about my B12 levels and he said, that he would do another test to make sure it wasnt a mistake and also take some more blood to make sure my body could absorb the B12. He told me that if there was any problems with the blood he would be in touch and if my levels were low and I couldn't absorb it he would arrange for injections to be started as it was important that it was sorted ASAP. He also said he would arrange a sigmoidoscopy to make sure there was no sign of anything nasty in the sigmoid.

No phone calls came and I had the sigmoid on June 25 (ish)(not pleasant)and probably could have been avoided had they concentrated on the B12 levels). I just presumed that as I had been told for many years that I didnt have a problem and it was all in my head.

I run my own business and was having a lot of trouble remembering orders, people and most other things. It came to a head when I fell down a ramp coming out of a shop - Most embarrassing! I also was getting weird pains in my finger joint that were there but not there. I had a foggy head, was losing my temper quickly and just wanted to shut the world away. To top it off, I had missed a period and then had a week of light bleeding and then a week of heavy bleeding and it wasnt stopping. I decided there and then to make an appointment. Got asked if it was an emergency and I said yes (even though I was told it wasnt). They said they could see me at 11.35. Went to the doctor and mentioned the periods first, then asked if the results of my blood test from April had come back - his first response was to ask if no one had been in touch. I then saw on the scree in red 137. I guess that was the reading. I also mentioned that another test was taken to look at whether I could absorb it, so he checked the hospital record which showed I couldnt. He immediately said you need to start injections and they were started on the Friday. I can't help thinking that this should have been started in February though.

I have to say, that over the two weeks I was having the injections, I was feeling better, and also didnt have the stomach problems I have been having for 15 years, but this last week I seem to be going back down hill again! I guess it is back to the doctors again!

Sorry for being so long winded, but this is my story!!

Janine

[AndreaM]

Hi Janine and welcome,

Another story of ignorance and incompetence from the medical profession. Surely there is some system in progress to follow through with test results.

At least you are now officially recognised as having PA but, if you are like many others, you will have to take complete charge of your own treatment and keep setting the agenda.

The first thing I would advise you to do is ask the surgery for a printed copy of all blood test results (you are quite entitled to this). Post them here, along with their reference ranges, if you would like help to interpret them.

There are a few levels which are very significant, especially folate and ferritin (stored iron). These are crucial to how well you absorb the injected B12 and most of us need a permanent folic acid supplement as it seems we are also unable to properly metabolise it. It would also be worth checking to see if you had your thyroid function checked and, if so, you should get a copy of these results too.

Have you been told to come back for a maintenance injection, probably every three months? If so, how long has it been since your last injection and how long after it did you begin to get a return of your symptoms? Many of us cannot last anywhere near three months and how long we last between them varies enormously from person to person. Some doctors will agree to give them more regularly while the majority won't but we'll cross that bridge if we come to it.

I hope this helps and if you have any more questions please don't hesitate to ask them and we will try to help,

Andrea

[pvanderaa]

Do you eat red meat?

Also avoid things that intefere with B12, - smoking, alcohol, coffee, maybe alergic items - guten, milk. Try stopping these for 1-2 weeks each and see if you notice any improvement.

I was getting a dip after my B12 jab until I started taking folic acid supplements. However, be careful not to over do Folic Acid.

Keep a daily log of: 1) tiredness, 2) fogginess, 3) all your food (snacks too), 4) your medications, 5) test your short tem memory. You will see a pattern - a lag betweeen eating something and your tiredness or your boost.

I found I was getting a boost from meat even though, with a B12 deficiency, this is not supposed to occur. Right now I am completely off of milk to see how that goes.

Your symptoms are unique to you and you are the only one who can sort them out. But remember, because the gut is involved, there is a lag (2 days sometimes) so change things slowly - i.e. a week or two at a time.
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Thanks, Paul - Riding this PA roller coaster while challenged by dyslexic dysgraphia (I correctly spell the wrong word).

[anotherwithpa]

Hi Janine,

Welcome here!

I recognise so much in your story, only difference I got to thin..IBS, eat well etc etc, nuts yes the worse, sweetcorn and peas dismal as well. Even the periods and then one for 3 weeks, which was the reason I got diagnosed..in my case they non stop looked at thyroid and ignoured abnormal bloodtest.
Anyway the good news is you can get a lot better, just accept it may take time and that it depends if you get the right treatment. In my case folate also became to low and addressing that was and still is the solution to the stomach problems, with far more frequent B12 jabs.

So believe in your body, you know when it is not right and also what does you good and what not. It takes time and bloodtests to get things right, make sure your serum folate and ferritine (=iron storage) are monitored besides B12 and Thyroid function as nearly 50% of people with PA also have hypothyroid unfortunatly.

Have a read of this, it may help, see:
http://www.patient.co.uk/showdoc/40001009/

I hope you will get much better treatment now,

Kind regards,
Marre.
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I'm no medic, just have PA and can only try to understand, offer support and learn from my own and other's experiences.

[jlchrispin]

I am a vegetarian and have been since I was 11, but from what I can gather regarding the information found, it wouldnt have mattered if I wasnt a vegetarian, this still could have happened as I can't absorb it.

My first course of injections (6 over 2 weeks) were finished less than a week ago and this week, my head is foggy and I feel confused and tired again. When I see the doctor, I will ask him to check the other bloods from February.

We are waiting to get my mum tested as she has Parkinsons. If she comes back as deficient, all her friends that have Parkinsons are also going to have the test as it may help ease their symptoms and delay the onset of the dementia side of Parkinsons, and quite possibly some other problems. My mum also had a serious hernia operation 14 years ago, which was infected and three years ago had the mesh removed, so has yet again got a hernia.

Since I have had the jabs, I haven't had any form of 'loose stools' and instead of 4 times a morning I have only gone once. I had a relapse, but think it may have been some pain killers I took and as we dont yet know what is really going on in my stomach. I have a feeling that I could have an ulcer or hernia - I have yet to discuss this with my doctor but as the specialist has written me off and has given me an appointment for January, I am not sure where I go from here.

I have just booked to see my doctor (today at 5.30) to discuss this with him and will let you know what happens.

Janine

[AndreaM]

Hi Janine,

Unless you had been vegan, you would still have been getting B12 from dairy products and eggs and, as you say, you actually have gastric antibodies so your diet is not the cause of your problem.

You need to tell your doctor that you are already getting the symptoms back again and that this is actually very common. It may be due to your need for a folate supplement so ask about that as perhaps the first way to try to tackle it. You may find that this alone makes a considerable difference but it will take a little while to build up the folate in your body before the injections have their full effect. Please reassure your doctor that continuing the loading doses for the time being is perfectly safe and is actually allowed under the doctor's own guidance (British National Formulary - section 9.1.2). You are permitted to have injections every two days until your symptoms stop improving so draw his attention to this if necessary. I am still on 3 injections a week after 18 months as I can't last on anything less. I have also been on daily folate (5mg) for all that time. My gastric discomfort has finally completely resolved itself after 30 years!

I hope you manage to make some headway with this.

Andrea

[pvanderaa]

[jlchrispin]

Doctor has prescribed 5mg of folic acid for 56 days and asked me to go back for a blood test in October.

Getting the script in the morning, so will keep you all updated.

[jlchrispin]

Maybe it was the fish. If you can't absorb b12 and you eat items with it in, maybe it can cause problems with the stomach. I avoid (and have done for over a year) coffee, tea, fizzy drinks, some fats (crisp n dry), and lots of other things.

[anotherwithpa]

Peas, sweetcorn..think its the skin, to hard to digest if digestion has gone haywire...green beans and asparagus do still cause me a bit of a problem and it can seem I have a problem with the green bit in veg (chlorophil as green often comes out green say..oh dear too much info perhaps . But after a B12 jab and posible some folate (half a 5mg tablet) I'm OK for 10days..then it comes back untill the next jab. In my case I will lose to much weight if I let it go on and get very weak. Oh well as we are on the subject, yellow is the B12 coming out...it comes out both ways so to speak..in my case certain forms of B12 cause me more problems than others, can be the preservatives used..But I was far worse without the B12 and folate, lost 2 stone and never got it back, its just not compleetly gone. Fatty foods, cheeses, cream, fatty meat or fried fish, or fatty curries allways cause me problems, bread with butter...but I'll eat all anyway, I eat anything realy, but perhaps know what to avoid when my stomach has gone to far the wrong way..Marre.
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I'm no medic, just have PA and can only try to understand, offer support and learn from my own and other's experiences.

[AndreaM]

[jlchrispin]

[anotherwithpa]

127 is then most probably RBC folate and depending on the ref range used for normal levels it may have been def. Anyway good you are on folate tablets and it will take some time to notice if it helps you.
October does sound like its when you are due your 3 monthly maintenance B12 jab, make sure bloods are taken before the jab. I expect your GP is first wanting to see how much B12 stays in your body before discussing more frequent B12 jabs, it is early days for you I expect and it all can take time, it takes 4 months to have a compleet change over of blood cells say.
Hope the folate makes a difference,
Marre.
_________________
I'm no medic, just have PA and can only try to understand, offer support and learn from my own and other's experiences.

[AndreaM]

Hi Janine,

The only problem with waiting until October for your next injection is that, if folate had been low when you had your last injection, you will not have absorbed much of it so taking folate now is only going to address folate deficiency symptoms but won't improve your B12 status until you have your next injection. This is one of the points which the medical profession just can't seem to get the hang of. They see folate and B12 as two separate problems, which they are, but they are also interlinked and a deficiency of one will affect the other.

If you feel you can wait until October then that is perhaps the best thing to do as you don't want to antagonise your doctor who is already treating you much better than many.

As Marre says, make absolutely sure that your bloods are done before they give you your next injection. It's not unknown here for doctors to inject you, take blood and then tell you your B12 level is very high and you don't need any more injections!

Andrea

[jlchrispin]