HiI'm due to have an iron profile, arranging it venous this time and thought it a chance to do any tests which could be useful. My Dr wouldn't provide a parietal test, but can see its included in 2 autoimmune profiles.
The 2nd profile includes adrenal, ovarian,islet & TPo. I've had adrenal issues so wonder if thus could be useful.
The other profile has antinuclear, which believe I've had in past, parietal, tpo, mitochondrial, lkm and smooth muscle.
Just spied the compsny has a sale ending tonight, so thought I'd have a quick ask on here please? Any thoughts much appreciated.
Thank you...
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Jo5454
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There is a lot of info missing here. Why do you think you might have a B12 deficiency? Is it being treated with oral supplements or with injections? What dose/frequency if it is being treated? Have you already been diagnosed in the past as having PA? The first step would be a test for your B12 levels when you are not taking supplements.
Thanks for your reply...bit of a hurried post, was just looking at parietal tests as they were reduced and debated whether to get one seeing as I've got to arrange a venous appt for iron profile. It was included within 2 antibody profile tests & I just wondered if anyone had found any of the antibody profile tests useful,etc.Sorry, I do post on here, I've a diagnosed functional def, via active b12/mma testing, under maybe wrongly diagnosed ME for many years& after a fashion this yr & becoming very unwell on tablets, have been given my monthly inj. back. Recovery is slow going, but then again building up iron stores, folate, vit d, etc isn't a quick business!
Only had one IF trst, negative, & refused parietal test, so wondered if it may be worth checking as believe that's useful in determining issues with Intrinsic factor.
A fair few family members seem to be being diagnosed with b12 problems.
I've had 2 positive anti-parietal cell antibody tests and my GPs take no notice of them. They just say that a percentage of the population test positive so it means nothing. Just to warn you that you might just be wasting your money even if it comes back positive.
Thanks Laura5, I didntbrealise a percentage of people test positive who have no issues... decided against ordering last night, so you've reassured me further! I'll.just stick to my iron profile & keep on with my treatment then...thanks.
I'm not sure how accurate it is to say that they have no issues. It may be that the issues just haven't had time to make their presence felt yet! There are some Italian researchers looking at this to see whether over the long term those who test positive eventually have other signs of autoimmune gastritis - given that the antibodies are attacking the acid and intrinsic factor producing cells in the stomach, this seems like a reasonable hypothesis.
Absolutely! Good to hear its being researched.Am presuming you have PA or b12 def to be on here, so for you it must've been helpful to discover these antibodies?
No - I was allowed to have B12 injections for a few years because I was feeling so exhausted but my B12 has only been 260ng/L at the lowest. They stopped the B12 when they changed policy during Covid. So I'm just waiting to see whether it keeps dropping and hoping that I don't get any permanent problems in the meantime. I've had low ferritin for 13 years though and have been taking iron supplements all that time and the research seems to show that for women with autoimmune gastritis, iron deficiency anaemia is often the first presenting feature and it takes 15 to 20 years to develop to B12 deficiency. Of course, it's possible I just have low iron and it has nothing to do with autoimmune gastritis.
Really hope you can soon get thise injections back, what are your symptoms like at mo?You sound very similar to me. I was diagnosed with ME 25yrs ago after so many antibiotics for tonsilitus, sinusitis & uti's & latex allergy,then finally came to standstill.
Never got back to full strength, kept having relapses & then learnt abt b12 9ish yrs ago.
Like you my b12 was 260, but after a fashion convinced my Dr to refer me to St Thomas NHS & I paid for postal active b12 test, it was bottom of range,27, so they did an mma test & that was 700+, should be under 200, so diagnosed with a functional b12 defic. & got monthly injections.
Covid,swopped to tablets been progressively worse & kept thinking it was other health probs. Feb I came to standstill.Nausea, dizziness, feeling faint, very weak down 1 side, poor vision, partic in 1 eye, brainfog, stammering, to name a few!.
After writing to my Drs a new Dr gave me a loading dose, but due to my b12 being 608 wld only give me every 3mnthly inj. I got it down to 2mnthly, but by Sept my blood cells still enlarged, symptoms still present,so got monthly back.
Its improving, but very slowly & Dec blood test still shows mch too high & rbc bottom range now but am hoping monthly will improve things.
Goes to show tho, it's poss to feel that bad but still have b12 serum level in the 600's!
Like u have always had diffuculty with ferritin. Ivevrecently got old notes from drs from 25 yrs ago when got the ME diagnosis & it says ferritin 11! I wasn't even advised to take iron. And b12 was the same then as what it was when diagnosed with b12 def, so am guessing it's always been my problem. So frustrating to have struggled all these years.
So, if I can give u any advice & you are experiencing symptoms, please push fir those injections back.
Have you had active v12, mma, or any other tests recently?
The variety of tests we can perform in 'Autoantibody Screens' is bewildering. It's not a matter of doing the test, it's more about interpreting the results. Many tests will return a low level of [background] activity, which can be confusing at best, and may be misleading. That's the role for your GP.
If you can't get along with your GP, then a second opinion would be sensible. Throwing huge sums of money at unnecessary tests in the hope that something will emerge from it, without a trusted, reliable GP's input isn't [in my opinion] a good idea.
Ask yourself what the company is trying to achieve by actively discounting sales of tests you don't need! It may be a genuine offer, or it may simply be trying to drive up turnover. TV ads for furniture and beds springs to mind.
Thanks FlipperTD..appreciate your input. The parietal cells test just a thought, but wasn't sure about all those tests included & yes didn't want to confuse myself further.Just read how some people's Drs see a positive result as a Pernicious Anaemua diagnosis & know I've asked more than 1 Dr in the past & they've never been keen thought it may be useful to know if this functional defic is down to a definite stomach issue or not.
So no, decided against being Vera or Sherlock & kept money in my purse & will just go ahead with the venous iron profile & chugging away at treating the deficiencies...thank you!
Hi Flipoer Td, can I pick your brains please?Have taken your advice and am doing my private once yearly thyroid, vit d, iron, active b12, stuff Drs cant, etc test by venous at local hosp instead of pinprick this year.
Seeing as I had a discount upped it to check hormones(know they can be erratic, but have been advised on thyroid site prolactin & testosterone can be useful) plus things that yve mentioned like red cell width, etc included.
Anyway to the point, it says fasting not necessary, but I always fast with thyroid, iron etc, so have an 8.30 appt & intending to do so.
Know yve said its a cleaner test, but can I check there's nothing that is disadvantaged by fasting please & I'm doing the right thing.
Almost always, fasting helps to give a 'cleaner' sample although it makes virtually no difference to the results. If I'm having a blood test, I always try to fast before it.
Great thank you very much for that. That's interesting, so being cleaner means it's easier to get results from it?Thanks, let's hope not, plenty water should do it, and have to swop good old porridge for cornflakes in car afterwsrds
I've had my tea, so it's time for a bit of rambling which may be of interest to some...
'Back in the old days', we used serum samples, and we needed the sample to clot before we could separate it and analyse. That took time. It could be a couple of hours. Especially if the patient was on 'blood thinners'. The dreadful possibility of the sample, centrifuged, being put on the analyser, and the plasma clotting in the analyser, was a nightmare. Then the introduction of 'separating beads', and 'gel' 'Heparinised sample tubes' was usually a decent alternative. It helped us speed up the time from sample collection to processing. However, a 'clean' serum sample had far less clotting proteins in the sample, and therefore the system was cleaner. Easier to clean down after use, and less contamination. Much of this resulted in a time delay before the result could come back to the doctor, and we couldn't help it.
A 'clean' serum sample would cause less problems, and a fasting patient could give us 'cleaner' samples too.
However, modern sampling systems are so good, that none of this really matters much, if at all. However, providing 'clean' samples for the lab is appreciated, although no-one will ever tell you that. [Oops! I just did!]
If everyone's sample came in 'clean', and 'fasted', then the analyser would probably suffer from fewer dodgy results, and less 'instrument noise' in the sample. This is our problem, not yours, however, it's your results at the end of the day.
Don't know what you had fir your tea, bit expect most of us wish we'd had some:)Thank you, that's very interesting and yes, makes sense. I have 3mnthly blood tests at mo & always fast and each time am told I needn't have, so now I have an explanation
I guess there's only so many early morningvappointments, ours doesn't seem to offer any before 9 these days, so they don't tend to expect folk to fast.
I shall continue to do so where possible then...thanks again, enjoy your evening.
Well, it started with a glass of Pinot Grigio, then a baked salmon steak with chili, some Bulgur Wheat salad, water cress etc and finished with fresh fruit & ice cream.
Thanks, didn't faint with hunger:)Took brekkie cereal & milk to eat in car afterwards Great service, very well.looked after. Surprised to see the place so empty, very different to my memories of nhs blood departments in the past! 2 nurses doing them & empty apptmts, before & after! An hours journey, but hopefully assured of results as opposed to the last few fingertip attempts! They arrived there this morn at 7.30am. Good ole royal mail
That's odd, the iron profile test didnt work apart from ferritin, but the iron profile withing the advanced test did? Same blood draw.Could I poss show you the RBC & iron profile please? Mch still overange at 32.6, a year on b12 injections now. but the RDW yve mentioned seems OK. Iron profile still confusing, iron just overange & saturation over. yet ferritin persists in 50's.
Lymphocytes underange, but not had virus, have read these can be underange in b12 deficiency?
Cortisol 769, overange and prolactin overange 779 (102-496). All hormones out of whack, linking to menopause it seems!
Folate jumped from 8 to 25 in 3 weeks?
Advised to retest prolactin in 4 weeks. Have read that inadequate vit d and b6 can cause this to rise. Vit d 52, so am going to double up myn400iu supplement. Have been advised to retest in 4 weeks.
Right-oh. This is on the limits of my 'everyday' experience, but I see it like this.
Transferrin transports iron around the body. It binds to iron which is either absorbed or released from processes; it's what it does.
Ferritin stores iron, so the serum ferritin reflects iron stores. If it's not used fairly promptly, then it's stored in the liver and elsewhere as haemosiderin.
My left ankle was broken quite badly four years ago, and as part of the healing process, the blood that leaked out and formed clots was broken down naturally, and the iron from the haemoglobin was stored as haemosiderin in the skin of my left foot and shin. So it looks like it's got freckles, although they're slowly going away [I think] as the iron is further recycled.
Serum iron is a measure of the iron circulating around your body, and the TIBC is the sheer amount of iron that could be transported by the proteins in your blood. Don't confuse 'transported' with 'stored'. When you're iron deficient, then your serum iron falls, and the capacity to transport iron is still there. So, if there's less iron, but the capacity to transport it remains the same, [the TIBC] then UIBC rises, and then as we see, in your case the (UIBC/TIBC) is as near as not 50%. Then bingo! The transferrin saturation is 50% too, but they're effectively measuring the same thing, but by different means.
Your ferritin level looks OK to me, but I'm not a doctor. Plus remember that ferritin is an acute phase reactant, so although it's storage, then it's not 100% strictly true, which is why the Serum Iron and TIBC can be helpful.
Your folate has rocketed. You've had in increased intake of folate, I suspect! Serum Folate levels reflect very much recent intake over the last few days. If the lab you use does Red Cell Folate, [not all do, and of the ones that do, some don't do it very well but don't tell them I said that!] then a red cell folate gives a longer term reflection. Very much like how HbA1C reflects longer term blood glucose whereas a random blood sugar reflects the here and now.
If your RDW isn't doing anything exciting then I think you're stable. If your Hb was low, then the replacements would bring along more new fresh red cells and the RDW might change then. But if your Hb is in your usual reference range [that's your range not the lab's!] then any change is very slow indeed.
Thank you very much Flipper TD, so kindvof you to explain all.of that. Had my b12 this morn, so will surely better understand it, bit foggy at wkend! I think I will get felt tips out and attempt a bit of a diagram to get it into my head once and for all.Interesting about folate thanks, majes it understandable in comparison to the blood sugar test. So you'd say it gies up and down on frequent basis dependant on intake?
I was imagining red cell width nay be nearer top.of range if mch is still overange, but my imaginings are not usually accurate are they !
Haemoglobin had gone to nearer bottom of range than my usual near top and rbc bottom of range, but was up a littke bit more this time.
Yes, 50's is good compared to single figures I've been in over past, but just aware that the monthly b12 is using more, I've been having too regular periods, though hormones result indicates menopause with a recheck on prolactin in case its pituitary linked. And until.i get up to 76-100ish in past has meant breathlessness and iron related symptoms,? We'll see...many thanks once again...
There's little doubt that folate varies more with dietary intake, as we don't store it like we do for B12. A 'healthy' B12 store used to be reckoned to be about 3 to 5 years worth, but folate is much, much less than that. No more than a few days.
If you're suffering from variably heavy and frequent periods, then your Hb is the first thing to reflect it. Followed by Iron. Normal breakdown of blood, we scavenge the iron very effectively and store it for recycling. [very green, isn't it?!] whereas losing blood as cellular material, then the iron's gone for good, and 1ml of red cells contains about 1mg of iron. Very easy to be tipped into negative iron balance, and that typically reflects on the MCH, and the MCV falls too. Therefore the RDW rises.
It sounds like you're doing all the right things, and probably in the right order too.
Thank you for that. Perhaps the sprouting purple broc I've grown is responsible for folate:)Yrs, it made sense the haemoglobin etc went down after a nearly 4 wk period in Dec. Just seems strange iron is a bit overange now, when cycle has shortened to 2-3weeks now, and ive not supplemented for a good month due to awaiting 2 lots of tests, but I must be keeping it balanced somehow?
I just feel slightly drugged & wanting to sleep, but obviously not due to iron then.
Vit d is 52nmol have been advised to raise that, as can make you ache /tired, so onto that next. Also read a def in vit d can effect prolactin levels, so will raise vit d supplements for month, then retest prolactin. What fun experiments we have Thank you again...
Not suggesting any further tests, but it's not unusual [not breaking into Tom Jones here] that once you stop losing iron every month, stores will increase. PS Broccoli is great. Easier than Brussels Sprouts. Tenderstem broccoli is something to try out, but I've yet to get that far. A sprinkling of Kale seeds in the top of a bucket in the greenhouse has yielded a constant supply of tender kale, clean and ready to eat. Outside, the pigeons would have had it.
Lol, bring on Tom Jones I say! Before I go doolally! That's not a misspelling if Delilah!Great, yep I grow kale too, just taken up my curly kale plants that have kept a good supply going over winter. Have had success with the the dark green long leaf type too, names escaped me something de Niro I think.
Yep, has to be under a frame as to dodge the gang of local pigeons. It's challenge enough keeping white butterflies away, have very small holed netting, but they have a tendency to drop their eggs as they fly over. Have been known to wash the leaves one at a time to de-egg them in determination to get some greens!
Delilah is a wonderful song with a horror story. An alternative presentation of the same song was done by 'The Sensational Alex Harvey Band' [see it on YouTube] and let me know what you think! A sad loss to us all; gone too soon, Alex.
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thought it may be useful to know if this functional defic is down to a definite stomach issue or not.
Parietal status changing from positive to negative???
Please help: Gastrointestinal symptoms
Expensive but hopefully worth it!
IF & Parietal Cell antibodies 
