Hello lovely PA Folks - Well, after some hectic Facebook marketplace efforts, and delay for holidays till next year - my private blood test results are in. Some results are Thyroid focused and I am popping these results in that Forum as well. So please bear with.
Here they are...its a mixed bag..I think?
B12 Related Tests: - NOT on B12 injections - i just have them ready teddy
Blood Glucose - 5.6 mg/L - Range 3.3 -7.8 mmol/L - in range - okay
HbA1c = 36 - Range 20 -41 mM/mHb - not triggering diabetes ?
Active B12 - >256 pmol - Range 25.2 - 165 - Looks good? = not B12 deficient ?
Intrinsic Factor AB - 1.8u/ml - Range shown as 0 - 6 - dunno what that means - i am IFAB positive...? but is that ..good positive..?
Ferritin - 157 ug/L - Range 15 to 300 = half way - looks okay right?
Folate - 7.9ug/L - Range 3.1 - 20 - low end but in range?
Thyroid Tests:
TSH - Mid Jan - 14.00 pm - = 0.7 miu/L - Range 0.35 - 4.94
TSH - 26th Jan - 13.30pm = 1.16 uU/mL - Range 0.27 - 4.2 - low end, but in range?
Free T4 - 26 Jan - 13.30pm = 17 pmol /L - Range 11 - 26 - mid range
Free T3 - 26 Jan 13.30pm = 3.7 pmol / L - Range 3.9 - 6.8 - below range...?
T3 - ??? FYI - I havent mentioned much about my mood so much, but i have been fighting against depressive / low moods for a long time, bouts of high anxiety and insecurity are regular companions - all from being previously quite fool-hardy, fast baking, 25 mile walks ...lets all go to the party this weekend type ... before.
So, any comments and observations very welcome . FYI- I still have ( 2 years +) the vast fatigue, muscle aching legs, brian fog, burning hands ( much worse from 6pm onwards??) the aching tennis elbow thing, fuzzy fingertips all the time, tingling numb feet all the time, nerve damage in feet, high pitched tinnitus all the time.
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Treesong2023
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I think i will do the iron/folate supplement. Yes.
I am not on the b12 injections - i just got a box of the Pascoes ready....I was waiting for my private tests the GP would not do you see. So thats a "pure" active B12 reading.. and it looks... good..?
I dont know what the IFAB results is either - if you have a score you are positive? ...or there is a normal range if you ( and everyone else ) have IF Antibodies..?? am foxed by that tbh.
But i am happy to hear from you and very grateful for your observations!
Aaah.. I see Nackapan. So,..../I am positive for ID Antibodies.. not for making IF..!
So, the IFAB test shows..I have antibodies to the Intrinsic Factor. The IF is needed to absorb the active B12 I think ...And so antibodies are the baddies here... in terms of stopping my B12 absorption...? Even if i have a high active B12 ..??
What I can't think out is if I have Active B12 that's high...that means I can't have b12 Deficiency right ..?
I had that experience too. My HbA1c was 42 when the upper range is 41. My other blood tests were deemed 'normal' despite the fact that my symptoms say otherwise. So the GP ignored the important bits and sent me a letter saying I'm pre-diabetic (I so am not...) and would I like to go on that totally useless bloody online course? Total joke 🤠
Q1 - If my ..Active b12... is > ( greater than ) 256 - its high but in the okay end ? - Now, does that mean it is being absorbed..? And ...if it is being absorbed.. then i have no B12 Deficiency?
Q2 - I have a positive IFAB antibodies result of 1.8 - does this result mean the IF antibodies work to stop absorption of the active B12? Then there is a B12 deficiency ?
Most Foxed folks, my mind is churning this over and over.
HbA1c is within range but not that far from the top of range so might be worth keeping an eye on this.
Might be worth having another test in a few months time or next year to see if results are increasing or decreasing.
Folate - 7.9ug/L - Range 3.1 - 20
Folate within range but not that far up range. Have you asked your GP or local pharmacist if you would benefit from taking a folate supplement with the RDA (Recommended daily amount) in it?
Serum B12 - 512 - Range 190 - 883
Active B12 - >256 pmol - Range 25.2 - 165
The serum B12 seems good but it's still possible to have B12 deficiency symptoms with normal or above range B12 results.
Do you have any idea why your Active B12 results are above range and have you considered having homocysteine and MMA tests as these can help to diagnose Functional B12 Deficiency.
The symptoms you list are consistent with B12 deficiency so worth keeping it in mind as a possibility.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If you were tested in past and had negative results in coeliac tests, check the NICE guidelines link below to see if GPs followed recommended diagnostic process, some don't.
A person with coeliac disease can get a negative result in usual coeliac test if
1) they have IgA deficiency
IgA is an immunoglobulin.
2) they were not eating enough gluten prior to blood being tested
Have your doctors checked any medication you are on to see if any of these might be causing neuro problems? Local pharmacist might also be worth asking.
I spent years performing IFAb tests [amongst very many others] and we tested samples which were sub-normal for B12. If users specifically asked for IFAb testing, we would do them, but the logic we applied was 'If you've got adequate serum B12 and you're not injecting the stuff, then you're absorbing it, and therefore have Intrinsic Factor'. Large amounts of free B12 can interfere with the IFAb test [depending on the method used] and cause false positive results. The tests employed for IFAb are not specifically 'antibody tests' in the immunological sense. The fact that you have a very normal B12 result makes me suspect that what you're seeing here is 'cross-talk' and the free B12 in the sample is causing 'noise' and a suspicious signal in the IFAb test. [That's my two penn'orth anyway.] I think the quoted range of 0-6 looks like that's a 'reference range' and indicates normality. But that should be explained. Rather than simply 'taking the money and issuing the numbers', the laboratory ought to be able to defend its position! [That's purely my opinion.]
For me, IFAb results ought to be issued as 'Negative'; 'Positive', or 'Equivocal, please repeat in 3-6 months. Recent B12 injections can interfere with the result.'
To be honest, I can't see much wrong with these results, personally.
Hi Flipper. Thank you for the feedback and insight into the IFAB test. I will have to think that through. It's such a minefield of complications. I haven't been injecting B12, but I was taking daily multivits tablets with b12 supplements incl for two weeks or so before my active B12 test, and it's result yesterday of >256.
My logic was that I could have a good b12 serum level reported, but could have a low B12 active due to absorption issues? So, the tablets would not affect the Active B12 level.
I am just totally foxed by the positive IFAB antibodies result of 1.8. As I understood that this test was "specific" for PA/B12.. ?
If my active B12 is that high, I can't have B12 Deficiency...right?
Again, I thank you kindly for trying to help me be my own health detective. I am also pinging people in the Thyroid and Rheumatic Arthritis Forums as well. Driving good folks mad ! K 🌻
If you're taking tablets [and not the 0.5mg/1mg tablets] then my guess is you've got IF being produced, and that's facilitating the B12 absorption. If you take'megadose' [1mg daily] then that can bypass the IF stage and get in by passive absorption magic.
The IFAb test is pretty spcific for PA, but the 'positive at 1.8 when a range of 0-6 is quoted' is fairly meaningless, as my guess is that their range of 0-6 is confusing and that should be taken up with the lab. If you've got a healthy B12 level by any method then I doubt you're deficient.
I'd be interested to know how your FBC results are, if you want to share them!
The B12 society advise people to stop all supplements/energy drinks etc that contain B12 4 months prior to testing, as it can mask the results. What bugs me is that these test numbers, as mentioned, don't come with any useful info, yet are treated as gospel in a blinkered kind of way. They're simply a part of the clinincal picture, not the main ingredient.
As you were taking something with B12, even a teeny amount can distort test results is the thing. That's why 2nd line tests are important, to get a wider clinical picture to consider with your symptoms.
I can see that your MCV and MCH are quite close to the top of normal range which makes me wonder if your red blood cells are heading for macrocytosis or have been macrocytic in past.
MCV 97.4 ( 80 - 100) can't see units
MCH 33.5 (26 - 34) can't see units
Both these results have asterisks by them which suggests to me that the lab thought they needed attention. I think they've been asterisked due to being close to top of normal range.
Can you ask the test provider about this?
In macrocytosis, red blood cells are larger than normal.
Macrocytosis can be associated with B12 deficiency and folate deficiency and has other causes.
Link about macrocytosis (aimed at health professionals)
Worth getting another full blood count in a few months I think to see if results are increasing or decreasing.
Albumin
Your albumin result has a warning triangle and asterisk because it's above the normal range.
High albumin levels can sometimes be associated with liver, kidney and inflammation problems so worth asking test provider and doctor about this.
Have you had any other test results that check liver and kidney function?
Alkaline phosphotase
36 ( 30 - 130)
The alkaline phosphotase level is only slightly above the bottom of normal range.
I think this needs to be kept an eye on, maybe another test in few months time?
What has the test provider said about this result?
Low levels of alkaline phosphotase can have various causes. I came across some info that suggested it could be linked to coeliac disease in some cases.
I think it's worth discussing these results with your NHS GP. Sometimes NHS GPs won't accept private results but it might make them repeat some of these tests on NHS.
Hi Sleepybunny. You are a star. Thanks for you OBS on my results. These results were the same a year and two years ago. My blood levels for rbc haemoglobin and haematocrit have been low end. The MCV values etc always at the top ref range.
The blue dots were my partner, sorry I should have said. So, not the Nuffield Lab. He put them on when getting a better image. He thinks my GP isnt thinking into my bloods. Just accepting they are in range. My liver and kidney tests are looking okay I think? eGFR of 64.
I am checking out the link later, but many many thanks. I do appreciate your time and help. K 🌻
He could be right about that, based on my own experiences.
I assumed that GPs would compare new results with older results and look for trends /results that were increasing or decreasing but it was left to me to point that out to them....I wasn't their favourite patient....
I got very frustrated and felt at times that I was doing their job for them.
Are you keeping a symptoms diary?
Maybe track up to ten symptoms daily or weekly, note severity and note relevant blood results and any treatment given.
My GP sits with his arms crossed, leaning back, and head cocked to the side.. six months ago when I said my symptoms were getting worse...he told me.... lots of women have health anxiety, especially post covid. I think he thinks i am going OTT on looking for a diagnosis, when the nerve study confirmed nerve damage - he passed it off - and said we might have to ask them to do another one.. I was aghast.
I do have an old diary that i use to track appointments, tests, how I feel, diet changes ( i did a month of no diary etc. But I dont track symptons as a set. I will do that !
Same situation with me. I've had to self-diagnose and tell the surgery what the problem is as nobody else has. Everyone there must know my name by now. Pushing at every level for tests and proper treatment, the thorn in their sides, fighting for all of us.
More than likely, yes. My haematocrit is slightly lower than yours and hasn't really changed in at least 5 years. I'm glad I could compare my previous blood tests. My surgery only did that as I gave them a copy...
Not much going on here, I'm happy to say! This FBC looks quite stable, but without seeing other results over time I can't be certain. If there had been much change in MCV for instance, the RDW would pick that up but it's stable. I note your MCV is quite normal but at the upper end, and your Gamma GT is borderline raised. The GGT is a liver enzyme that is very sensitive.
Hi Flipper, 😀😀...very glad to have your comments on my FBC. Thank you kindly Those results were the same 6 months and a year ago. No movement really. Kind regards 🌻
"but I was taking daily multivits tablets with b12 supplements incl for two weeks or so before my active B12 test, and it's result yesterday of >256."
I'm not medically trained but if you you were taking B12 supplements prior to the test and the result was well above range for active B12 that suggests to me that there is some absorption of B12 in your gut.
Serum B12 - 512 - Range 190 - 883
Your serum B12 is middle of the normal range not high.
When I searched online for "B12 deficiency high serum B12 " I found some interesting articles. Some details from this search could be upsetting as some serious health conditions are mentioned.
I've looked to see if there are any health issues that could lead to high Active B12 (Holotranscobalamin) with symptoms suggestive of B12 deficiency but haven't found anything yet.
I was thinking about your symptoms and wondered if you'd ever been tested for Lyme Disease. There's a lot of overlap between symptoms of B12 deficiency and lyme disease.
Lyme disease was one of the conditions I got my GPs to test me for...I'd been bitten by a tick in the past.
Not everyone with lyme disease gets a bullseye rash.
Hi Sleepybunny, and big thanks. Yes, I did lots and lots of walking. I will look at Lymes disease as well. I am trawling through the Thyroid and Rhuematic Fever side as well. As my symptoms peripheral neuropathy, the burning and tingling hands and feet, constant fatigue, dual carpals, tinnitus etc map to a variety of things.
I really thought it would be a B12 deficiency. A diagnosis at last! So much so, I bought the needles and pascoe vials etc to get going as my GP isn't engaging.
But if my b12 active is up high. Then I am can't be B12 deficient - even with the positive IFAB.
Might be worth getting MMA and Homocysteine tests if you can afford it. These can help to diagnose functional B12 deficiency. Results of these tests may be affected by recent B12 supplementation.
It's a puzzle as your symptoms are suggestive of B12 deficiency.
If you're a PAS member maybe they could help explain about IFAb test results or tell you where to look for info.
Would you definitely know if you'd been bitten by a tic? I'd thought about that too. I (used to) walk a lot and was bitten by what I thought was a spider back in 2019. Very painful indeed!
We have walked all over South Devon and Dartmoor. It's Ticks a-go-ho here. They are so small I doubt you would feel them. But I always cover up while walking, no shorts or anything.
I didn't feel it at the time, only after the bite got painful. I'd had a spider bite before, I could see where it bit me. I was in the Yorkshire Dales at the time, near the 3 peaks, thinking i'd been bitten where I was staying. It's a mystery.
Hi Sleepybunny. Again, tons of thanks. I have managed to get a private appointment with an Endocrinologist for next week. Just gonna stick the cost on my credit card, as I am just worried sick. I was so sure it was B12 d.
I will talk to him about the two tests you suggest. I am terrified is something like an immune disease, MS or worse. But given I have been on hefty oral Multi-vits I am worried that my B12 will be raised and interfere with the MMA, homocysteine.
Hiya, I have only just started taking supplements Sleepybunny - Jan 2023. As I am a lean meat and two veg, lots of cheese, fruit, chicken stir-fry and Fish and French beans type.
But I see what you mean. I wonder if I need to check all my Vits..?
To my knowledge, in order to prevent false test results, it's best to be clear of any supplements, or energy drinks, fortified foods etc, containing B12 for at least 4 months - for the urine MMA (which is more reliable - but can distorted if you fail to take the urine sample correctly...), and the homosystine tests. Any supplements will 'normalise' the results, and can even make the B12 look high, and this won't be a true reflection of your B12 levels. Your blood renews roughly every 120 days, so waiting 4 months ensures you get the best chance of having a more accurate measurement of your B12 status. You often only get 1 shot at these tests, so best take advantage of that. I am not a medic either, more of an informed patient becoming an expert in a very short space of time...
Thanks so much for your inputs Mixteca. I am grateful for your ideas. Here's my thinking .....I might be running with more deficiencies than I realise....so general vit
supplements needed..? I think having the high b12 active result indicates I have b12 available to use...as it's been absorbed...and it's a high result. So, testing for B12 active again in 4 months and not taking any supplements doesn't look like an option...?
If it ain't B12 deficency then I need to look elsewhere..?
I am looking into the thyroid and diabetes sides now...? 🌻🌻🌻
You are most welcome. It's pointless testing B12 levels once you start on supplements/injections - even the guidelines say that somewhere. I'd say your folate although 'technically' within range is actually lower than your body needs. NICE guidelines mentions a 'intermediate' area of deficiency, i.e. anything above 10 nmol/L (4.5 ug/L) indicates no deficiency; below 7 nmol/L (3 ug/L) indicates deficiency; intermediate level 7-10 nmol/L (3-4.5 ug/L) can be suggestive of deficiency. Similar symptoms to B12 deficiency.
It's important to get other tests done - Vit D is crucial, possibly a full iron panel. It's common to have multiple vitamin deficiencies - I've ID anaemia and have been chronically low in that and Vit D in the past.
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