A little confusion ......

[Abijah]

Hi all .... On my 4 th week of alternate days of b12 injections after my diagnosis of PA.. Disturbingly I requested my back bloods results and I had previously read at 125 in Nov 2012 (obviously not treated). Next bloods for b12 July 2015 ....b12 read as 212. I have had neurological symptoms since about September 2012 and the chances of complete recovery are slim but I am hopeful. All the way through my GP suggested psychological issues and fibromyalgia. I kept disagreeing knowing that I had not been experiencing mental health symptoms and I just did not meet all the criteria for fibromyalgia although some of my symptoms did mirror this. Nearly 4 years after my first symptoms (due to having to adapt my lifestyle choices due to pain and fatigue) I gave in and accepted that I may have something like fibromyalgia and could I be referred to rheumatology .... So GP did blood work....b12 135...... Nurse practitioner picked it up and I have started treatment. Had to fight to get every other day until symptoms improve. My questions are ??? If I am not absorbing b12 ... How do levels go from 125 in 2012 to 212 in 2015 ... And then down again in July 2016 .... Now I'm PA ??? I have some improvements in my health and my energy is up but I still feel so tired ..... Has anyone else taken a while to feel a little more alive ..... Thanks xx

[PAS-admin Partner]

So sorry to hear your GP messed up so bad and you've been without treatment for 4 years I've seen people completely recover with neuro symptoms for years, so keep hope/faith.

The B12 test is not an accurate test. If you test it twice on one day, you could get results that are 10% off. Then there's also a difference in labs, different testing-method, which could give different results. Then there's test-errors and factors than can give a false high(er) B12. You clearly had a defiency in 2012 and it should have been treated then.

As to if you have PA or not...There are many causes of a B12 deficiency, PA is just one, although the most common. It can be tested. But for the treatment it does not matter, that is the same. Focus on that for a while and then you can always have some causes tested. For information about PA and tests and everything related, see the Pinned Posts on the homepage of this forum on the right. Lots of info there, and if you have specific questions just put them here.

I understand you have copies of your blood results. Have a look as well at (recent) folate and ferritin, as both work with B12 and need to be ok as well.

[Abijah in reply to PAS-admin]

Thank you for the information and it is nice to hear people do recover from neurological symptoms. Both my folate and ferritin are above normal ranges. I am a mental health nurse and have some understanding of reading bloods ...... I don't think it's standard practice to test to find out what is causing b12 deficiency or absorption issues. From what I have read none of these tests are reliable anyway. Another question if you don't mind. As my b12 increases ... Will my folate deplete quickly and is it advisable to take a supplement. My level was 9.4 before treatment. Thank you for the pinned posts .... I look forward to a good read. Kind regards

[PAS-admin Partner in reply to Abijah]

9.4 is ok, but not too high. Because you inject every other day you could take a 400mcg folate supplement to be sure it stays on a good level.

There are some tests that can be done, and even should be done. The tests for antibodies (IF) is an important one. Even though negative does not rule out PA, positive does confirm it, so it's worth doing that one. Helicobacter is quite reliable as well and, depending if you have intestinal problems, coeliac and parasites are a consideration as well. But as said, you could do this later as well and first focus on th treatment and recovering. If you have any questions after reading the Pinned Posts and our website, just put them here.

[clivealive Forum Support]

Hi Abijah I'm not medically qualified but may I ask whether your Folate level was tested as B9 is essential to help process the B12 - the two go together.

As to recovery time - no two people are the same and I still have some (minor) symptoms after 45 years but hopefully you will start to feel a great improvement as the months go by.

I wish you well

[Abijah in reply to clivealive]

Hi clivealive. Both folate and ferritin were within normal range. Thank you for your response and I am remaining hopeful that I will feel like a new person soon enough. I'm astounded by the stories of the impact PA has on people and feel like I want to inform everyone to be tested as standard screening. I had got to the stage where I've had to reduce hours at work ..... Goodness knows what would have happened if I had been left untreated. I am mental health trained so have some medical knowledge and I'm embarrassed to how the NHS is delivering care. I hope awareness grows although something is occurring as a few people in my local village have been diagnosed recently as have 2 staff I work with. I can only hope that knowledge is growing in our service providers. Ooh think I've ranted now ..... Kind regards to you and also wish you well.

[clivealive Forum Support in reply to Abijah]

Hi Abijah if you could could get your hands on the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. with your medical expertise a) you would make more sense of it than I ever could and b) you could work on "our service providers" from within.

Another fantastic book is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon - and no, I'm not on commission

I lived in total ignorance of what P.A. was all about as I knew no-one else with it and although I saw a nurse every four weeks and doctors on the usual once every couple of years basis for general check ups I was never asked how I was coping with the disease. My eyes were never "looked into" and I now have retinopathy in my left eye. It was just a quick jab and "see you next month".

Down through the years I had occasionally managed to get a three week injection of cyanocobalamin (which I've been on since the start) as I had begun to notice a return of some symptoms in the run up to the next one.

One day after a nurse had given me an injection I daft like said to her "I'll see you in three weeks" - she looked at the screen and said she wouldn't give me one as the prescription read "every four weeks" and reported me to my "one size fits all" doctor who adamantly refused to alter it. When I tried to explain about my symptoms he simply said "It can't be your P.A. as you are getting the injections - go away".

Six years ago I joined the Pernicious Anaemia Society and my first question (on what became this) forum was "Am I the only one who feels the need in the run up to my next injection for them to be more frequent?"

I was amazed at the responses and no - I am not alone.

After a long long battle I managed to gain "permission" for an "occasional" (i.e. 2 or 3 tines a year) three week injection and from June this year my prescription now reads "every three weeks". But what a long tedious battle it has been but I'm still "clivealive" at 75.

[Abijah]

Hi clivealive.. Thanks so much for your support. Misplaced my glasses yesterday and couldn't read the post...... I'm only 45 and feel like I'm 85 sometimes lol. I will get both books for my pending holiday with a little light reading now haha. I've had a bad day today where I argued with the nurse practitioner who is treating me as I dared to ask for an extra b12 script .... Which she did supply. When asking her about what happens when I stop improving she said "you'll get 3 monthly injections". ... To which I responded ... But I have had neurological symptoms for nearly 4 years so .... It's every 2 months ..... She wouldn't budge and said I have the guidelines in front of me blah blah. So I pointed out BNF and NICE guidelines ... Still she said no 3 monthly. Their ignorance astounds me. I have printed of said guidelines now and intend to see my just as ignorant GP to discuss. I asked about IF antibodies and she said .... We will only do that if your b12 levels don't come up despite injections. Am I missing something? I then asked well what if I get symptoms in between injections .... Her answer .... It's probably because something else is causing your neurological symptoms. I gave up and thought ..... I think I'm going to end up treating myself as others have done so. I feel like I want to complain to the DOH or the GMC... But not sure it will get me far. Anyway enough about me. Thank you for sharing your experiences... It is clear that you are appropriate named .... Still going strong at 75. Oh as for working for service providers within .... I would be interested .... But before I commit I'd like to feel a bit better. I go part time next week and I'm hoping this helps me destress and recoup... My job is very stressful and just looking to unburden a bit before recommitting to anything. Thank you again and kind regards

[ljmulledy]

I'm three years into treatment...it's taken a long tome to feel better. I know i am not the same as before, personality and ability to cope with Stress, i get nire easily agitated now and its harder to calm down. That is permanent as my PA went undiagnosed & misdiagnosed for so ling and wasn't until an EKG Picked up heart issues, which prompted all sorts of other tests i was diagnosed via blood work.

[Abijah]

Hi ljmulledy ... I think I'm the same; my personality has definitely changed and I hope that reducing my hours will help me to manage stress better. I'm sorry to hear that you were left undiagnosed leading to heart issues. I wonder how you are doing now? Are you in effective treatment. It's shameful how the current healthcare providers appear to be blaze about what we are going through. How long did it take for you to feel better? And are you left with any neurological symptoms? Bless you and thanks for your post 😀