Good afternoon all, now that I am taking the time to actually face reality with my recent diagnosis I wanted your feedback on my results as outlined below. I should point out that I will be revisiting my GP in the near future again to discuss my condition further however I wondered what steps I should be taking now and what I should be considering such as dietary changes, supplements, gut and digestive health etc. I should also mention that I have just started receiving my B12 injections. Would really appreciate any thoughts. Thank you in advance.
Parietal Cell Autoantibodies - Postive
Iron Profile - Serum Ferritin - 5 ug/L
Iron Profile - Serum Transferrin - 3.1 g/L
Iron Profile - Percentage Iron Saturation - 3.8%
Serum Vitamin B12 - 161 ng/L
Serum Folate - 4 ug/L
Written by
Lollyloo1978
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Try to get lots of green leafy vegetables, they are excellent source of folate and other minerals. Red meat for protein iron and b vitamins. A multivitamin/mineral supplement is good to have during injections since vitamins work together in several body functions.
Thank you ever so much for taking the time to reply. This is the type of advice I was seeking and has made me feel a lot more positive about things. Just out of interest but are there any particular multivitamins you would recommend which I can research? Many thanks again!
Positive PC antibodies with low B12 suggests PA. If that is the case then you probably suffer from low stomach acid (achlorhydria) which can reduce folate absorption. That would explain your marginal serum folate. ncbi.nlm.nih.gov/books/NBK5...
I would take 400 mcg folic acid every day to make sure I had enough. It isn't as reliant on an acidic environment for its absorption as are the folates in food. ncbi.nlm.nih.gov/pmc/articl... Folic acid is easily converted to other forms of folate.
It also looks as if you are lacking iron. This can be caused by achlorhydria. I would take Solgar Gentle Iron (available from Amazon) once a day for this.
Thank you kindly for taking the time to respond. I cannot tell you how helpful this was and how it can has given me clarity on what can only be described right now as a very isolating situation. I am currently in the process of ordering these supplements now.
I would recommend eating a banana every day as they are full of potassium which you need to work along with your b12 & I was advised by my GP never to supplement potassium.
Thank you for replying. I am very grateful for all of these replies. They are helping me to consider everything and giving me some perspective again. Its a tad disappointing that my GP who is normally excellent wasn't more informative at the time of my diagnosis.
When I was first diagnosed I recall taking 5mg folic acid and a prescribed iron supplement daily, for 4 months. I continue on 5mg folic acid every second day. As iron, folic acid and VitB12 work together for healthy red blood cells. I am relatively new and welcome everyone's advice too. This is a great informative site and I wish you well Lollyloo x
Hi there, thank you so much for your reply. I absolutely agree with you on that one, this site is amazing. It's really great to connect with other people who have to live with this condition. I ordered my folic and iron last night based on what you and other people have told me. I am trying to stay positive that in a few months time I will hopefully feel a bit better once I am well into my B12 treatment and supplementing my diet. Fingers crossed any way! XX
I find PA is a bit like a roller coaster Lollyloo. Some days I feel great, have energy and think I'll always feel like that, and that I've turned a big corner. Then other days, I can't concentrate, feel so tired and unwell but can't put my finger on it. So be prepared and just go with the flow and don't get upset if progress is slow at times.....luckily I cope very well, and I bet you do too x
Always drink a small carton of coconut water on day of injection for potassium as seems to help me . Find it disgusting but if it does the job and as appetite not always great after can’t face a banana .i also take a cheap multi vitamin with folic acid and magnesium and lots of other vitamins everyday .
If in uk I buy Tesco own multi vitamins and minerals which are in green and white box are £4 for 30 and on 3 for 2 . With regards to potassium when I picked up initial prescription for loading said that potassium can be depleted to start with which is why after feeling terrible after loading to begin with I now drink the coconut water .
Excellent advice Av42. I was actually just reading up on PA and potassium so thank you for breaking it down in simple terms. (Sometimes some of the websites use so much medical jargon it can all get a bit over my head)
Try to get your potassium from salad and other sources that have low calories and sugar, so steer clear of too many bananas: draxe.com/top-10-potassium-...
I also agree with Miss-guineapig some days I feel a bit strange but just try to get on with it as most of the time feel like my old self . For me I can have my off days at any point during time between injections so have just accepted this is me now .
If I was you, I would certainly be looking to increase my ferritin and folate levels. You haven't given ranges, but mine say ferritin 13 - 150 ug/L and folate: 4.6 - 18.7 ug/L. The advice I was given from here (not GP) was to keep ferritin and folate up into top 1/3 of ranges. 5mg folic acid every other day sounds a bit excessive to me.
GP agreed that I was likely to benefit from 3 month course of ferritin and folate, because my hair was falling out and my gums bleeding and she thought that these 2 being low were more to blame for these symptoms than my B12 deficiency. It seemed to work, but soon after finishing the course, both dropped again. It might be a good idea to also get vitamin D checked as this is also a fairly common problem, it seems.
Folic acid seemed, for me, controllable at 400mcg, which is double the amount generally accepted as a daily requirement, and now over a year later, symptoms have gone and I have dropped to 200mcg, which I take as part of multivitamins and minerals (daily tablet) and iron same: 100% of daily requirement gained from this tablet. I only dropped dosage for folic acid after having a blood test which confirmed that levels are now high.
I still keep a daily record of symptoms, because it is difficult to keep track of what is getting better (or worse perhaps) with so much going on at once. List your symptoms, then record daily what symptoms are present, log their frequency and severity. It helps when consultants and GPs ask questions about these. I now use this to make myself feel better about improvements I had forgotten about: it does take a while to get better and I do have some memory problems.
It is important that your GP checks your ferritin and folate levels by blood test, because these need to be within range. unlike B12 which does not need checking once you are having injections, as it is water-based and you will get rid of what you do not need naturally by urination. Your GP should be well aware of this, but you would be surprised how many aren't.
It would of course be better if you could get enough folate and ferritin from food, and is not that difficult ordinarily, but I don't seem to be able to hold onto mine, no matter how much I eat. I still eat a diet rich in B12, ferritin and folate, just in case, but for me, self-injecting B12 every other day has become necessary to stop myself from getting worse. This is not usual but happens to be true for me. I have daily diarrhoea and have had for about 4 years now, which could prove to be why I have vitamin deficiencies that are difficult to stabilise. This does not seem to be a common symptom, you'll be glad to hear !
Pernicious Anaemia looking most likely, as fbirder has said above, your diagnosis should make treatment more straightforward. After having loading doses, the current recommended frequency is 1 injection every 2-3 months.
Hopefully, your GP will be aware of what to do and will be interested in keeping a check on ferritin and folate levels, and your B12 deficiency symptoms and how you are responding to treatment. With PA, this treatment is for life, as there is not a cure. It' s all about management of your condition and is entirely possible. Help and support is always available here if and when you need it. A GP who understands this condition/ willing to learn and keep an eye on your progress is essential.
in a perfect world, when iron stores (ferritin) are low, our percentage iron saturation goes up in an effort to maintain balance (homeostasis).
your is not not doing this. so...
i would get tested for h pylori because it is an infection and it needs iron to be happy. our bodies go into natural protection mode and reduce iron in an effort to kill (starve) the infection of what it needs to proliferate.
i had h pylori without heartburn which is the most usual symptom. Instead i was eating less due to feeling full early and some nausea where food didnt sound good. This can be caused by having low stomach acid.
Wow this is very interesting Kimber and thank you for bringing it to my attention. It can be quite daunting to try and decipher the blood test results so information like this is invaluable. I am currently in the early stages of researching everything and noting down questions for my GP - this will be added
optimal percentage iron saturation is 35 for females. i know the range on tests goes down to 20 or even 15 from some labs but that is bs.
i had everything retested 2 months after my 2nd h pylori treatment, during which it was finally eradicated. and imagine my happiness when my percentage iron saturation had jumped right up to 34.
i was confused though, because it took 8 long months for my stomach to completely heal and start absorbing b12 on its own from food and supplements, (everything i had read said 2 months for b12 also). so i had to continue b12 injections
i thought that maybe i had had h pylori for so long it had permanently stopped my intrensic factor cells from being produced but nope. only 8 months which is way better than for life and the roller coaster of having to deal with illness.
Very interesting and actually you answered something which I had been wondering in that how soon after diagnosis and starting treatment do people get retested. I also wondered if the time of day you get tested and if you have eaten beforehand etc makes a difference to the test result? Lots and lots of questions going though my head right now
retesting for h pylori should not be done until 2 months later. some places do it after 2 weeks but i would advise against that time period because the antibiotics can beat it back without completely killing it and it can take up to 2 months for h pylori to repopulate the stomach sufficiently to be picked up by the retesting.
also, time of day does not matter, but you cannot eat, drink (including water), or smoke for 3 hours prior to doing a breath test.
Its crazy that a lot of GP's are not giving out this advice! Thank god for people like you and communities like this is all I can say. Thanks KimberinUS, your information has been enlightening!
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Help!
