Hi allI posted here last week my vitamin test results from medichecks. My active B12 and folate were low so as per advice on the forum I have held off supplementing until my GP tests for pernicious anaemia.
My mother had PA and I certainly do have some symptoms of B12 deficiency.
I'm due to get my bloods done at surgery tomorrow. GP reckons I just need to have repeat B12 and folate and check for intrinsic factor antibodies. I asked about MMA testing but she said it wasn't necessary. Do they just check serum b12 on NHS labs or do they also do active B12?
Also my ferritin was sort of midrange certainly not optimal. I bought a gentle iron supplement as recommended on the forum but I haven't started it yet. Should I also hold off starting it until I get results of my PA tests ie does supplementing iron/ ferritin interfere with test for PA?
Many thanks
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Hollybushroad
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I believe NHS do routine Total B12 blood test mostly but active is used too.
Personally I’d hold off any supplementation until had blood work done and got diagnosis.
This way it will give you the bare bones of what you’re dealing with and then add in where necessary when all testing is done … GP may still say it’s ok to take supplements, I would want to know my levels are not being skewed by anything else.
Believe me there’s still GPs out there saying you’re only a little bit coeliac regarding levels as they’re just over range, and just don’t over do the gluten … my friend was told this few years ago, completele madness! 😵💫
Yes that was my gut feeling too re holding off supplementation of B12. I was advised on the forum a couple of wks ago to have further testing as my private tests were "within range" but very low. I had my bloods done at GP today. I asked nurse was she doing a full iron panel along with the B12. Folate and intrinsic factor antibodies but she said no cos GP hadn't requested it!!
My mum had PA and took B12 injections. I certainly do have alot of symptoms some neurological which really does worry me esp tremor in my neck which has got worse over past month. I'm worried that even if my results come back at bottom but "within range" that they will not prescribe b12 injections....seems to be all about labs and no patient symptoms!!
I fully intend to get a printed copy of my results.
I see you are Coeliac.
My mum also had Coeliac.
I was tested for it in 2018 (IGA antibodies I think 🤔) but result was negative. I tried a gluten free diet for about 5months a few yrs ago but didn't really see much improvement in my symptoms I know these 2 autoimmune diseases frequently co exist. I also have hashimotos. So hard to know what is causing what symptoms
You may require another type of coeliac test, look on same website for advice.
If IgA deficient you can be inaccurately test negative for coeliac disease.
I had silent symptoms until my nutritional status was so poor it caused neurological problems, this eventually caused a weakness in my vertebrae and triggered cascade of problems … I still have malabsorption problems decade on, my coeliac levels are negative have been consistently for 7-8yrs as I adhere to very strict gf diet. I felt no difference going gf too, apart from knowing it’s not causing any more damage… as it was doing unknowingly. I still have to supplement even though I have a very good diet.
Certainly makes you more aware of nutrition well has done for me… I don’t eat from free from aisle really as full of ultra processed food and additives that can cause poor gut microbiome, I stick to natural gf things as much as possible.
I have Hashimoto’s too, positive TPO antibodies only, with poor conversion T4-T3 and hypothyroid myopathy is my main concern and symptom… although I’m perimenopausal and have gynaecological issues too so trying to decipher what’s what at moment.
I had my B12 injections taken away after loading dose as deemed ok levels after GPs testing 🤦🏻♀️…by 6 months my level was almost deficient again, so I have 3 month injections regardless of my level now, which is still tested annually with all other vitamin statuses due to a letter of what is required annually by my gastroenterologist, otherwise my surgery wouldn’t do them, my gastroenterologist said if they can’t do as ask to be referred back to him he’ll do them… he was disgusted they stopped my B12 injections so wrote to my GP stating what is required … I have copy of the letter too.
Thank you for your reply.I ordered the finger prick test earlier for gluten sensitivity as recommended on forum but not sure how accurate it is.
It's a minefield having all these autoimmune diseases. Forgot to say I was diagnosed yrs ago also with sjogrens syndrome just to add to the mix.
Im only 56 but feel like I'm 86..... So many aches and pains and other symptoms too numerous to mention. Think I'm going to have to give gf diet another go. The link you sent me for Coeliac UK assessment suggests I need further testing.
I have been a member since diagnosed I have their app you scan items when shopping it lets you know if coeliac safe and also venues.
I know someone who has IgA deficiency another in family has coeliac disease so more investigations maybe required to eliminate that, mention IgA deficiency to your GP find the NHS link to this and pass this on to receptionist for GP to explore or next appointment mention if they could look into this and ask for this area to be eliminated and what other tests are they willing to do … scope would be gold standard but I doubt that will happen anytime soon a genetic test will most likely show you carry gene from your mum anyway but doesn’t say you actually have triggered this disease but probably highly probable as you’re symptomatic… I’d push for answers not be fobbed off or paying myself for things when GP should eliminate your concerns, if they don’t do certain tests but are willing to except a test from elsewhere ask them which test is best and where to order it so at least not wasting money as some surgeries won’t except tests from random places, so complete waste of money.
I guess your test depends on what testing see above link regarding IgA- IgG etc if just testing IgA I’d contact GP and get this area sorted out as mentioned don’t pay for more tests.
You obviously you have to be eating enough gluten and until your GP says otherwise or tests can be false negative and future tests your surgery does will be skewed, it’s all on Coeliac U.K. on how to prepare if don’t know already.
I’m 57 and still perimenopausal (another family thing, late menopause) 🙄and started hrt 3yrs ago and it helped a lot with relaxing my muscular problems…my body went into complete shutdown and couldn’t get out of bed due to stiffness and muscular pain this continued for months…my musculoskeletal problem had been increasing every year, a trip to A&E they ruled out major problems then I actually couldn’t get out of bed this was my last major attack in 2020… that’s when GP finally referred me to endocrinologist. I got put on Liothyronine (T3) but chap I saw retired and then another endocrinologist stopped my T3 suggesting it was more adrenal like my problem but after tests showed definitely not that, he still thinks it not thyroid but hasn’t ruled out putting me back on T3 now after numerous investigations and this has shown him I’m not converting well but we are in process of elimination as unfortunately between the two endocrinologist I had also encountered gynaecological problems an ovarian cyst and also adenomyosis so these can cause pain and possibly more investigations to come.. These can cause my problems too I think as I’m surely soon to be menopausal or post menopause it’s a wait and see unless more investigations to find other problems, I prefer not to undergo anything, if this area could naturally diminish given my age.
To be fair I was on T3 about a year and my levels plateaued and was still low and symptoms didn’t get much better than on higher dose of Levothyroxine regardless of low T3 so it made me reevaluate another area of concern although I possibly needed more T3 but chasing the TSH prevented any increase medication … the conversion of the thyroid hormones takes place in other areas as well as small percentage available from thyroid, so making sure kidneys/liver health is tip top to get best results along with all vitamin and minerals is my main goal also.
I have endocrinologist appointment early autumn and as I have re high creatinine no other kidney issues know my blood & urine tests fine also had a scan but nothing to see, there maybe a connection there, so hopefully I’ve planted that seed of thought in email to endocrinologist so see what comes of it if as high creatinine I feel needs more investigation and the low T3… as I know there’s a correlation with this and my symptoms so I’m gathering up research to present to him.
Thank you for your reply.You certainly have had alot to deal with over the years.
I'm post menopausal but never went on HRT.... probably should have tried it put probably too late now as it's been 6 yrs now.
Anyway I want to get my thyroid hormones sorted first as I have first private appt with an endo in couple of weeks and then see what happens after that.
Can't wait on NHS appts...the system is broken. It was a hassle even to get my GP to agree to test further for B12 folate and intrinsic factor antibodies. I will probably get results of that at end of the week.
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