Progress

I joined the PAS and this forum at the beginning of Sept this year having been diagnosed with PA in May 2013. I hadn't received any loading doses and was put immediately onto 3 monthly injections. My readings on each subsequent visit to the Doc were around the 200 mark. Thanks to the forum I realised that the numbness and burning in my feet and burning skin on my right side may have been due to B12 deficiency and not diabetes as I thought. At the start of Sept I had Blood taken before a minor knee op and the B12 reading was 575 that was 2 weeks after my regular dose.

So November comes I'm still off work so go the doc early get blood taken and a week later go for the results. B12 293 bearing in mind this was two weeks early. 'You're B12 level is OK' says he, 'Oh no it's not Its too low' says I 'and I have neurological symptoms' explaining the burning etc. I told him that I had joined PAS and that at no time did I want my b12 level be allowed to fall below 500 at worst! He then put me on 2 monthly jabs.

Success! I had my dose that day.

One week later I get phone call from surgery stating Doc wants to see me and to book a double appointment which I did. I spent an hour with him and he went over all of my symptoms right from the start and had a complete medical. The upshot was that I got another jab the next day and am now on 1 monthly.

At this appointment he went through some of the original test results when I asked him if I had PA. He told me that a Parietal cell antibody test proved 'mildly positive ' but the IF antibody test was negative but 50 percent of people negative for this can still be anaemic. So none the wiser there.

However, the point is get more info to back up your case tell the you're in the Society and it might help. I don't know what he did or read bring about his change of mind but I don't really care.

14 Replies

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  • Glad to hear that you have a GP that has listened to you.

    Hope that things continue to improve and that some of the numbness etc is starting to go.

  • Didn't think he would Gambit thought he was sceptical at best but he seemed to have a change of attitude. The other point of the post was to say thanks the regular contributors like yourself Poppet, Marre and others for the info and advice. WW

  • Changing the world one GP at a time :)

  • Just a random thought yesterday but may be your GP actually read the instructions that come with the B12 phials (they tend to be in German as most of the hydroxocobalamin used here is manufactured there) - which give the normal treatment as maintenance shots monthly.

    If you look at the NICE site for some reason it says it is only licensed to be administered once every 2 months - difficult to understand why but ...

  • Oh, lovely to read! Good for you to have got B12 injections monthly, well done, glad we were of help in some way. May you improve a lot more with more frequent B12 injections and keep making sure your bloods are OK, and folate and or ferritin do not drop to low with increased B12.

  • Thanks Marre, what would it mean if that happened?

  • For good blood production you need a good supply of B12, folate (and B6) plus iron, so if you give a lot of one and have little of the other 2 then the production can go wrong. Keeping things as much in balance as is possible helps, a multi vitamin can be helpful. I hope this makes sense, its like if you want cement you need sand water and lime, if you have tons of sand but not enough water and or lime you will not be able to build a wall, it will just crumble..my simple explanation

    Some more in here:

    pernicious-anaemia-society....

    Kind regards,

    Marre.

  • Well put, I'll have look for a suitable multi. I've had a quick look at the first article in the link and it looks very interesting. Thanks again

  • You have skipped many of the hurdles a lot of newly diagnosed PA sufferers get stuck with. Lucky you to have a supportive Dr. Now start a log book and track all your symptoms so you will be able to provide "evidence". You will also need multivitamins and probably folic acid as now that you are getting B12, the metabolism will rapidly use up other nutrients, metals, and other vitamins.

    You may find that you have new symptoms from the jab. In your log, by treating the jab as Day 0 you will see some symptoms repeat each cycle - I typically get a bout of diarrhea on the day after the jab. The severity is proportional to how low I got before the jab - i.e. I put it down to the body detoxifying after the jab and dumping all the metabolic byproducts into my gut.

    Also neurological symptoms take a long time to repair but the progress is steady. You can monitor this progress in your log book.

  • Thanks Pvandera, I was at the Doc tonight for the result of a cortisol test which he said was ok. He told me my folate level was 17. 1 last time of asking in November. He said this was ok, it was 9. 0 in May 13. Perhaps yourself or Marre can confirm that for me. I firmly believe that because I seemed to know a bit about PA He may have had a look at the guidelines or the other stuff in the BMJ. I don't know but what you said Marre about the licence is probably correct in the first instance as he is quite cautious in his prescribing of drugs etc.

  • Folate of 17 seems fine, but it depends on the ref range for normal used by your lab. Lab use different ref ranges s it helps if you get copies of the blood test results with the lab ref ranges used by our lab.

    See:

    labtestsonline.org.uk/under...

    | Note

    Reference Ranges

    Reference values are dependent on many factors, including patient age, gender, sample population, and test method, and numeric test results can have different meanings in different labs.

    For these reasons, you will not find reference ranges for the majority of tests described on this web site. The lab report containing your test results should include the specific reference range for your test(s). Please consult your doctor or the lab that performed the test(s) to obtain the reference range if you do not have the lab report.

    For more information on reference ranges, please read Reference Ranges and What They Mean.

  • Sorry Gambit62 it was who mentioned the licence issues on the Hydroxo.

  • That's okay - I'm quite mellow when I get enough B12 :)

  • Thanks again Marre, more to look into.

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