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!
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