Hi,
I had my daughters blood tested a couple of weeks ago,as I was diagnosed with PA in February.They texted her (she is 19) saying everything was within "normal" ranges.I am really annoyed,I think these blood tests are far from normal.Where do we go from here.
My daughter is always tired ,had recurring mouth ulcers and gets out of breath easily.she is also ver pale. ANY ADVISE?
Thank you
Hi
Both B12 and folate are low in usual reference ranges. Really need to know ranges though, especially for intrinsic factor. If she has not had any supplements it would be worthwhile getting active B12 checked at St Thomas to confirm functional B12 deficiency, with the option to get MMA or homocysteine checked if in the grey area.
I'd contact the PAS and ask if they can help.
pernicious-anaemia-society.org Head office: 01656 769 717
If you leave a message they'll get back to you. The chairman is very sympathetic.
The ferritin, folate and B12 are probably within range (I've assumed you're in UK) but seem at the lower end of "normal".
Perhaps the GP would consider giving her an Active B12 test, MMA test and homocysteine test especially if you offer to pay...
Be warned that if she has been supplementing herself with B12 the test results will be affected.
Do you know your area's reference range for IF test?
It is possible to have severe B12 deficiency with normal serum levels and mouth ulcers, pale skin, fatigue and getting out of breath can all be associated with B12 deficiency.
Has your daughter got any other symptoms? Have a look at this list especially any neuro symptoms as the treatment is more intensive if neuro symptoms are present.
pernicious-anaemia-society....
My understanding of recent articles and documents on the subject is that patients should be treated if symptomatic. I'm surprised that they are not considering a trial of B12 with PA in the family.
Has your GP seen the following documents? The PAS website has some useful documents in their library section. You don't have to be a member to access most of them.
ukneqas-haematinics.org.uk/...
This says that neuro damage can occur with normal serum levels.
I think the gist of this is that the patient should be treated if symptomatic.
Try googling "BCSH cobalamin and folate guidelines". Have a look particularly at page 29 which is a diagnosis flowchart.
Low levels of iron make the red blood cells smaller, low levels of folate and/or B12 make the red blood cells bigger. Therefore if there is both iron and B12 or folate deficiency the red blood cells can appear normal.
I'm in Ireland second chance.I have PA.
I just looked at an earlier post of mine.I had asked her doctor (about myself) what was considered a positive intrinsic factor abs in Ireland ,and she said back then anything over 1.
I've emailed her doctor to ask her to take another look at the blood tests.I am thinking she should start taking Iron supplements,as low iron can mask enlarged blood cells that are indicative of Pernicious anemia. I know she's not low enough to be considered deficient,but it will be hard to stand by waiting for her health to deteriorate and do nothing,and still I don't want to try nasal or sublingual b12 yet because it will falsely raise her serum b12.
I'm at a loss ,I'm just coming to terms with my own diagnosis.
Hi
That's really difficult for you- it also makes it more likely your daughter is deficient too! I don't see why you couldn't get her active B12 done- it is a private test that costs about £18 which GP can do and then send off by post as far as I know. It would help confirm.
Perhaps discuss IF result with GP if they said over one is positive? That confirms inability to absorb B12.
In many other European countries and Japan, your daughter's B12 would be considered very low and "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?'.
So I'm not surprised that you're upset that low serum B12, together with symptoms of fatigue, breathlessness, pallor, sore mouth etc., the 40% higher probability of PA when in the family, plus intrinsic factor result, are considered 'normal' !
Your daughter is only 19 years old and, if not treated, could be at risk of developing neurological symptoms, so I agree with others here that further tests should be done, if further evidence is needed, or you could write to your doctor, enclosing the latest BMJ research document summary, as they may be going on blood tests alone and looking for the large red blood cells - anaemia***
b12deficiency.info/b12-writ...
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
***It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Best wishes for a good outcome Pat
thanks for all that Polaris.
She is taking this news better than me.She says over all she feels "fine".As her mother I will always think I know best,and I have had an awful couple of years before being diagnosed myself.I have written an email to her doctor as the office was closed when I rang.If she still insists that everything is still ok,even taking the family history etc into account, I will tell Rachel to start taking Iron supplements(I take spatone now) and get her blood tested every year,unless she starts getting more symptoms.I know she shouldn't start supplementing b12 yet as it will effect the test(and they don't do the active b12 test each time) and I know that b12 should be started before folate(I am learning so much from this site).
A month ago this would have brought me to my knees,but we will deal with it a day at a time.
Thank you everyone for all your advice and help .
thank you sleepybunny,I was writing when your message came through. I might call them tomorrow,Thanks
OK ,so Rachels doctor just called me,,she said the IF abs teat has to be above 6! (this is the same doctor that told me a month ago that anything over 1 is positive,so many inconsistencies) so that answers that. She said(no surprise) everything else was "within normal range"(no surprise there either)and that we could keep an eye on her i.e. retest in 6 months or a year unless she becomes symptomatic. (the reference range for B12 is 180-900) I'm not going to push things at this point,over all Rachel feels OK,and I just don't have the fight in me. Thank you everyone for your help in figuring out this maze ( :
So if you are not going to test etc any more for a while, would it be wise to supplement methylB12, metafolin and iron etc? If you kept a diary you might notice symptoms like fatigue, pallor etc changing in her? I would think that at this point malabsorption etc might be just beginning, so you could potentially get a lot of nutrients in at a key period in development for her. That way you have not lost a fight - by your own discovery you have been able to prevent potential damage. I am assuming your daughter is teenage? Ferritin at 30 is "within range" on the usual range, but it is too low, far from optimal, and research suggests she would feel better if it was over 60 at least. Menstruating girls/women obviously need to keep their iron levels up. I can't find research that shows a firm basis for optimal on ferritin, but around 80 would be better. I think she will begin to have more energy with some ferrous bisglycinate, or ferrous fumerate, or Ferrochel.
I do this with my daughter, who is also low in energy compared to her peers, and had a ferritin of 40 when last tested. She says she feels better when she keeps her iron level up.
Thanks Aspmama,
My daughter is 19 ,and her periods really do take a lot out of her,she is always hungry(maybe because her body is craving energy in some form).I have started giving her Spatone liquid Iron.I figure if her iron is raised ,she will be more likely to show one of the classic signs of PA in her bloods in that her MCV will be large.I have read that low iron shrinks the red blood cells,and PA makes them appear large,so they appear "normal"when we have both going on.
I don't want to raise her serum B12 falsely with supplements yet,incase it hinders her in being diagnosed correctly.
What do you think?
Thanks so much
It depends if you want to fight for testing now or leave it for a few years. If her periods are heavy, and she's 19, I think she needs iron now - but that's just me. I don't think Spatone has a lot of iron in it - have a look at the percentage of RDA. She's low, at 30 ferritin.
You could get her antibodies to intrinsic factor and parietal cells tested on a private test - the GP won't do it, because her results are "in range" but you could pay for that, if you think there is a decent chance she is moving towards PA in the future. At least you would know then and you wouldn't be so worriedm and you could give high supplementation. It's expensive, but it's an option.
I'm not a doctor. I'm not even diagnosed with PA, just Hashi's and suspecing that I may have had antiparietal antibodies most of my life. But I have a daughter with similiar symptoms and results, similar age, and she reminds me of myself at her age. I'm giving her the iron and B12 because I think she needs them and there is no hope of the GP identifying her condition, if she has it. Oh, and she's off gluten, because it gives her stomach aches.
Very best.
Update on my daughter
Posting for my daughter
My son's blood test results
Blood tests back
Daughters blood test show very low B12 & Folate
