Do you still need to have the Intrinsic Factor if self injecting with Methylcobalamin?
Simple question I know but have looked for answers but very foggy brained and tired at the moment and trying to cross things off my list of possibles!!
As have been SI with Methyl for quite some time now and have a little bit of money for private testing I need to spend it wisely.
Not posted for some time but find this forum very friendly and helpful and love reading the posts.
thanks Sallyb
Hi Sallybones You do not need Intrinsic Factor if you are injecting Vitamin B12.
However, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglohbin. Both iron and folate may be needed so please see your doctor to have these checked.
I am not a medically trained person.
I wish you well.
If you’ve been injecting for ‘quite some time’ then the initial burst of red cell formation (which only slightly increases the body’s need for iron and folate) will be long over.
thanks for that fbirder. Does the increase of blood cells and platelets show on a FBC?
Hi clivealive thanks for your very clear answer. You were very helpful the first time I posted on this site and gave me hope to carry on.
thanks SallyB
Hi Sallybones. What Clivealive and Fbirder said and...
Just wondering what testing you're considering having done (expensive little beasts).
No point in having Serum B12, Active B12 - results will be skewed because you have been injecting B12. Also, can't use either levels to determine the effectiveness of treatment - have to go by symptoms (or should I say, effective symptom relief / repairs to the systems that use B12).
Likewise MMA - if your deficiency is due to an absorption problem (and most are), your MMA levels will have returned to normal following injections (because the body is now processing B12 at a cell level). However...
This test can show the presence of a B12 functional deficiency (where B12 is not being processed properly at a cell level). In this case, MMA level would be very high, because it's not being used to process B12 at a cell level (as would B12 in the blood a) because you've injected it and b) the body's not using it - though still not worth testing B12 levels because they'll be high anyway because of the injections).
So...no idea what blood tests you plan but post again if you would like further help in deciding what to go for.
Good luck 👍
Hi Foggyme think I'm being a bit thick here but my excuse if I've had a steroid injection in my shoulder today and it's just beginning to hurt like hell!!
Is there a test for MMA?
I'm actually looking at a test bundle on offer from Medichecks - Well Woman Ultra I think it's called, £149, as it includes full thyroids which I need too as I'm going it alone with thyroid with help for TUK forum. I've had all sorts of tests here there and everywhere and although I keep copies, different things have been tested at different times. But I just want a base line as of now to work from.
I've got other investigations going on inc heart. Got a diagnosis regarding gastric probs now of Slow Transit Motility and redundant colon. Explains a lot for me. So I am getting there with firm diagnoses after years of tooing and froing!!
Tests Included
Red Blood Cells: Haemoglobin / HCT / RBC / MCV / MCH / MCHC / RDW
White Blood Cells: White Cell Count / Neutrophils / Lymphocytes / Monocytes / Eosinophils / Basophils
Clotting Status: Platelet Count / MPV
Inflammation Marker: CRP-hs
Kidney Function: Sodium / Urea / Creatinine / estimated GFR
Liver Function: ALP / AST / ALT / CK / Gamma GT / Bilirubin
Proteins: Total Protein / Albumin / Globulin
Bone Health: Calcium / Corrected Calcium
Gout: Uric acid
Diabetes: HbA1c
Iron Status: Iron / T.I.B.C / Transferrin / Ferritin
Cholesterol Status: Triglycerides / Cholesterol / HDL Cholesterol / LDL Cholesterol / Non-HDL Cholesterol
Heart Disease Risk: HDL % of total
Minerals: Magnesium
Thyroid Function: TSH / FT4 / FT3
Hormones: FSH / LH / Oestradiol
Vitamins: Vitamin B12 (active) / Folate / Vitamin D
Homocysteine is another one I thought of doing
what do you think?
Hi Sallybones.
I've has a quick peek at the Medichecks Well Woman UltraVit test (currentlly on offer for £119) and note that the thyroid panel does not include the thyroid antibodies thyroid peroxide antibody (TPO) or thyroglobulin (Tg) - essential to check for Hashimoto's / Graves’ disease (autoimmune conditions that cause hypo/hyper thyroidism). The folks in the thyroid forum will say that these tests are an essential part of a full thyroid screen (Hashimoto's is one of the main causes of hypothyroid and often goes hand-in-hand with PA/B12 deficiency).
So, would suggest that you try and get a thyroid package that includes the thyroid antibodies (Thyroid UK also recommend Blue Horizon Medicals - several thyroid packages on there - no idea on price - some do contain TPO and Tg tests).
Medichecks do an MMA (methylmalonic acid) blood test (£99 but currently have 10% off with voucher code MED56 (valid to 30 June).
Viapath Nutris also do a couple of MMA test bundles (£60-£135) depending on choice.
It's really tricky trying to decide what tests to get done privately isn't it. And it does make me angry that GP's refuse tests so often. And then largely refuse to accept the results of any private tests that have been done (though it can prompt them to test again).
Think if it was me, I'd focused first on tests that a GP won't do (full thyroid panel - including TPO and Tg, MMA....and then try and persuade the GP to run the more general ones (FBC, liver function, kidney function and so on...)...though I know how difficult this can be sometimes (just thinking of your pockets here).
Also -thinking about the tests you've already had done - if these were recent, and there have been no significant changes health wise, since you've had them done, then perhaps better to focus first on thyroid panel (and MMA if you want to rule out functional B12 deficiency - though this is unlikely if you're responding well to the B12 injections).
Good luck with it all 👍
thanks so much for your thoughts Foggyme. You're a great help and sounding board and helping me get my head rounds things.
Because any tests I've had through the NHS / Gp/ various consultants over the years, have been done willy nilly I've not got a full picture of where I am now and I feel I need to know. I have kept all my records and always ask for copies of letters and tests but to be honest I'm so tired of asking for them - various investigations still ongoing. i feel I need to be in charge now and although I SI with no problems and have been on all the right supplements to get my other vits and minerals up, my health is still deteriorating. So something is still amis.
I wouldn't say I'm responding that well to injections and I'm back to doing one every other day. Have experimented with longer times in between but I don't think it makes much difference. Will concentrate on that again.
Had forgotten about the thyroid antibodies - thank you.
cheers
Sallybones. Just looked at the list of tests you've had in the past and there's a glaring omission.
Have you ever had an auto-antibodies tested (ANA etc.). If not, ask you GP to do an antibody screen (they're very expensive so NHS testing best).
The symptoms of many autoimmune conditions are very similar to those of B12 deficiency. When my B12 deficiency ceased to be controlled by B12 injections, turned out that I'd got an underlying autoimmune condition. Not saying that this is the case with you, but perhaps somewhere that hasn't been looked before, so certainly worth ruling it out.
If you do get the tests done and any of the results are raised, this would require referral to a rheumatologist for further investigation (the Antibody tests a GP can do are not specific enough to identify an autoimmune condition - a rheumatologist can do much more specific testing and investigations).
Took me years of intermittent ill health, a sudden and severe health crisis, and two-and-a-half year of pushing for things and trailing around all the 'ologies' before I finally got a diagnosis....and treatment. So I know how you must feel by now...bit like hitting you head on a brick wall...daily...with knobs on 😖.
Don't give up...just grit your teeth, be tenacious, and carry on until you get some answers....because they're out there somewhere.
And perhaps a new GP?
Good luck 👍
Just an after-thought.... anyone between the ages of 40-70 is entitled to a free health check every five years (if healthy 😳)...run by many GP practices or other availability (if your surgery does not do them).
How good are they - variable - but.... it could be a way in for some routine blood tests (save you having to buy them 😉).
More information here:
nhs.uk/conditions/nhs-healt...
👍
OOH thanks again Foggyme. Not aware that my GP has ever done an Anitibody Screen but will look back over my results. I've got GP results back to 2003 as needed them for ESA tribunals.
I've done many 'ologies' as you say, and now getting somewhere with some things but seems it's up to me to join the dots. My GP is really nice and quite supportive, but limited. She has always referred me on without qualms but no-one seems to be able to pull things together and they don't talk between 'ologies'!
Part of the problem is apart from my face when it is ashen and tired, I look well!
My muscles are firm as if I've done a workout at the gym but I literally can hardly do anything at all.
The other part of the problem is because I had several episodes of bad depression in my younger days, for many years 'they' kept trying to lead me down the mental health route ie anti depressants so my physical health was mostly ignored! I'm sure that is a common occurance for others.
However I eventually realised that food was a big problem for my depressive episodes, as I usually went off my food and about 6 weeks later I would feel better. I cut out many things out of my diet and no episodes ever since. The mental health people wouldn't accept that was the answer tho. That's years ago now but it remains on my records and follows me round like a dead duck!!
So I will grit my teeth and ask her about ANA screen and health check.
It really helps when you get help from someone who's been through similar battles and got there.
Thank you so much SallyB
Know exactly how you feel Sallybones. Trouble is, doctors now treat people as a bunch of systems rather than a whole entire human being...with working parts (or not) all connected. Nobody ever seems to look at the whole jumbled mess. Bit like taking a wheel of a car and then wondering why it's scraping along the road with sparks flying out (hey, it looked okay in the photo).
And yes, I too was ignored for years (my label was ME, which I never had). Sad and bad.
Hope all goes well and just keep at it 👍
P.s. the test you want is called an antibody screen (or antibody profile) - ANA is just one element of that test 😉
Intrinsic factor is only used for absorption in the gut so not relevant if you are injection.
Supplementing B12 can affect the IFA test - giving false positives - so you need to stop before taking the test - how long you need to stop for depends on the exact test method and seems to vary from 24-48 hours through to around 2 weeks.
However, as IFA is notoriously prone to false negatives it often needs to be done several times before you get the right answer ... and a string of negatives just leaves you wondering ....
thanks for that Gambit62. So not much point in doing it then, I'm quite happy to keep SIing with methyl and not worry about IFA testing. I know I won't get a diagnosis of PA on my medical records but not worth the mental effort of pushing my GP. Cheers Sallyb
Positive intrinsic factor tests
Positive Intrinsic Factor
Intrinsic factor antibodies
positive then negative intrinsic factor 
Intrinsic Factor at top of range
