New member seeking PA advice

Hi everyone. I have not been diagnosed with PA yet but I after almost 4 months of illness, I was told that I have a Vit B12 deficiency and have been given injections. These ended 3 weeks ago and I'm still not feeling great. Part of me thinks they've missed something and I've been misdiagnosed, but maybe I'm expecting too much too soon. Should probably give you some background on it.

In April I almost passed out at work and I had been having some mild pains in my kidneys. Immediately I went to a drop-in clinic and was told that I was going to have a kidney stone. Since then I felt extremely fatigued, I'd get gassed out doing very little, weird pressure in my head and I found it hard to concentrate on much of anything. Pains in the kidneys presented to me like a UTI (had them before) but they went away after a couple of weeks.

Over the next month or so I had lots of blood tests which didn't give my GP a clue what was wrong with me. In Feb '15 I was diagnosed with Polycythemia, I stopped smoking and that has resolved itself now but I continued to feel light-headed. GP referred me to a Hematologist in June, thinking that this might be a blood issue. Hematologist did more blood tests and all he could find wrong with me was B12 and folate deficiency. Vit B12 level was 128 at that time. After checking up on B12 deficiency, it does explain a lot of the symptoms I have been having since April.

GP surgery gave me 6 B12 injections over the course of a couple of weeks and as I said, the last one was 3 weeks ago. During these injections I asked a GP how long until I feel well enough to go back to work and he told me 3 weeks. A couple of days ago I started to notice some change but I still feel run down. My brain is working better, fatigue's a little less and I find myself gasping for air less. The tinnitus is still with me, that and an ache on the tops of my feet have been very persistent symptoms. When I was still feeling light-headed after the Polycythemia should have resolved itself I got to thinking that I might be celiac and was feeling improvement when I cut out gluten. That was at the start of the year. After April I asked to be checked for celiac disease with the rest of the blood tests. This came back negative and the Hematologist made note to my GP that "given his persistent GI symptoms, I wonder if there is an element of malabsorption here". I will be seeing him again in a couple of weeks to test for PA.

My employer has been very patient but they can't wait for me much longer. I might have to force myself into going to work although I have not recovered. I'm finding that very stressful.

Wrote more than I meant to there, so if you got this far - thank you. I am just wondering if anyone can relate to this, any similar stories of advice would be appreciated. I can't say that I have felt well supported by the NHS so far and as I haven't recovered yet, I am concerned that maybe it's something else wrong with me they haven't picked up.

13 Replies

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  • Forgot to add something. Given that I have had all these B12 injections and my GP said that after 6 my levels will be high - why am I still symptomatic? Does it take time to absorb? If I'm full of B12 right now then why do I still feel the effects of deficiency?

  • Absorption from injections is very quick. What can be slow is repairing the damage of low B12. The 'three weeks' claim from the doctor is highly optimistic. However, now that you levels are up where they should be (we hope) you should start improving.

  • Very few GPs understand the symptoms of PA/ B12 deficiency. B12 deficiency symptoms are very subtle, take years to manifest and are often the result of an inability to absorb B12 through the small intestine for diverse reasons, e.g. coeliac disease, a family history of Pernicious Anaemia or other autoimmune disease, so I'm glad that they're doing further tests for PA.

    Your B12 is very low and, with neurological symptoms, should be treated adequately with injections as defined by the BNF 'alternate days until no further improvement' to avoid irreversible damage.

    It is also important to note that, once b12 treatment is started, the test results don't mean anything (bottom of page 4 of the BMJ document below) under 'How is Response to Treatment Assessed' :

    "Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not normally required."

    Here are some links, including the latest BMJ research document, in case you need to write to your surgery:

    b12deficiency.info/signs-an...

    Latest BMJ research document with useful summary

    cmim.org/pdf2014/funcion.ph...

    stichtingb12tekort.nl/weten...

    "Conclusion: A vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover

    stichtingb12tekort.nl/surve...

    "After a year: The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."

    bcshguidelines.com/document...

  • Thanks so much for the responses. I appreciate all the materials Polaris and look forward to going through them. Not knowing what's been going on with me and why, is a big source of frustration. Planning on seeing my GP so I will bring up the treatment suggestion indicated...they told me 6 shots is all I'd need (then one every 3 months).

    fibirder, thanks for saying the 3 weeks is optimistic. The other GP I talked to about it didn't say that but said that it's subjective and takes some people significantly longer - keeping it vague. If you don't mind elaborating, what did you mean by "repairing the damage of low B12"?

  • B12 is involved in two main processes that can cause symptoms. It is essential for making the DNA in the cells that evolve to become red blood cells. Without enough B12 the cells can't divide quickly enough because of a lack of DNA. But they keep on growing to give macrocytic (large-celled) anaemia. It can take a while for new cells to replace these defective cells.

    Peripheral neuropathy is caused because the insulating sheath of the smaller nerves cannot be repaired properly. This can take much more than three weeks to improve.

  • Are you in UK?

    Page 29 in the "BCSH Cobalamin and Folate Guidelines" shows the recommended process a medic should go through with someone they suspect has B12 deficiency. Page 8 in the same document gives details of UK B12 treatment for those with and without neuro symptoms.

    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"by Martyn Hooper

    "Could It Be B12" by Sally Pacholok and JJ, Stuart

    Other links

    PAS (Pernicious Anaemia Society) pernicious-anaemia-society....

    PAS tel no 01656 769 717

    martynhooper.com/

    b12d.org

    patient.info/doctor/pernici...

    "I asked to be checked for celiac disease with the rest of the blood tests. This came back negative "

    It is possible to test negative and still have Coeliac disease...see link below.

    coeliac.org.uk/coeliac-dise...

    "so I had lots of blood tests"

    I found it helpful to always get copies of blood tests. I was told things were fine and sometimes they weren't when I got copies. Have you had folate, ferritin and full blood count(FBC) tests? Folate, iron and B12 work together so good levels of these three are needed.

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    " I will be seeing him again in a couple of weeks to test for PA."

    I assume this means you will get an IFA (Intrinsic Factor antibody) test. Bear in mind that this test in not always reliable and it is possible to get a negative result but still have PA. Page 29 in the BCSH Cobalamin and Folate guidelines mentions Antibody Negative PA.

    I am not a medic just a person who has struggled to get a diagnosis.

  • Yes, I am in the UK. Thank you for the links.

  • Reading your post, it's amazing how much I can relate to it! I have had a very similar experience and totally feel your pain, worry, and fear.

    I had been having stomach problems (gas and bloating but no diarrhea or vomiting) and was checked for celiac. The test came back negative, however, like you, I found that cutting out gluten made me feel better. I had an upper GI scope (which found nothing) and the next day felt like a zombie - completely exhausted, unable to think or process simple things at work. The day after that, like you, I got so lightheaded I almost passed out at work. A coworker had to drive me home. I slept 30 hours in the next two days, but have never felt rested. For a month, they mistreated me for a sinus infection but then finally figured out I was B12 deficient. I live in the U.S., and I understand doctors treat this differently here, but I started on injections of 100 mcg every two weeks. My second one was last week and I am still exhausted and foggy. But, like you, I have seen a little progress -- it's just very slow. I tell people it's like I get .5% better each day, so I can't really tell a difference day-to-day, but looking back a week I can see I'm 3-4% better. My doctor said it would take until my third or fourth shot, so 6-8 weeks total.

    All that to say, I totally relate to what you're going through. I've been terrified that something worse is wrong and can't believe how completely awful and useless this has made me feel. I wish I could offer advice, but am still learning myself. But, I do know that having someone else understand how you feel can go a long way. Hang in there and know you're not alone!

    Lastly, once I have the energy, I plan to read this book about leaky gut. I am positive that with gastro issues, B12 deficiency/malabsorption and lactose intolerance (all of which have developed over the last year), gut health is where I need to focus: amazon.com/Psychology-Syndr...

  • Thank you for sharing srmika. It's reassuring to hear from others who are dealing with this too. Good luck in your recovery :-).

  • Thank you! You, too!

  • P.S. Were you eating gluten when you got tested for Celiac? If you weren't, you may have gotten a false negative, because when you're not eating it, the antibodies they test for won't be present in your body. Just thought I'd add that. :)

  • Got tested twice because of that. First time the GP didn't tell me that my not eating gluten would be a problem. Had to go stuff my face with pizza and donuts for a couple of weeks and then do it again. Still came back negative and now that I'm eating gluten again, bowels aren't so happy. Gonna cut way down from now on though.

  • I wish doctors could suggest we eat pizza and donuts more often. :) I'm with you on this one - I don't have celiac, but feel so much better when I avoid gluten.

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