Tests while on injections

[Galadriel1]

Hi all, I have just been to see a gastro and he has taken blood to test for Celiac (spelt that wrong) he told me, I have recieved letter stating my blood chemistry, ferritin, folate are all normal and B12 now normal after starting injections and that methylmalonic acid and serum homocysteine levels are also normal and intrinsic factor antibodies and gastric parietal antibodies are also negative. Ok before my Dr appointment, I think I need to check which of these results will have been skewed by me having an injection just before blood was taken? I am on B12 from Dr every 2 weeks. I thought that the Homocysteine and MMA test would be normal if in treatment and needs to be tested before treatment starts..... am I wrong?

[Galadriel1]

Thanks for your reply Hidden That's what I thought...... and of course the antibodies tests are not reliable! Just not sure why he did those tests when he told me he was taking blood to check for Coeliac's disease (still spelt wrong) There is no mention of that in my letter... Oh and my 'treatment' is only working so well since I started SI every other day! Even with every two weeks (which I am lucky to have) I had low RBC and high MCV, MCH which is now being rectified, RBC now in range - only just but moving in right direction, and MCV, MCH coming down slightly, still bumping along top of range but again moving in right direction! I just want to be sure of my case for tomorrow. I have to keep fighting to keep the every 2 weeks and I want to be able to tell them I am self-injecting and be able to have my blood levels and vits monitored with Dr.

[fbirder in reply to Galadriel1]

What's your folate like?

Macrocytic anaemia (high MCV) can be caused by low folate. It may be worth supplementing with folic acid or, if you already are, switching to methylfolate - 400 ug a day - for a trial period.

[Galadriel1 in reply to fbirder]

Hi fbirder my folate is high end of normal, 18.8 (I think) last result. I take 5mg folic acid daily too.

[Galadriel1]

Yep, I asked for that amount to bring my folate up last year and told G.P. it was needed to enable the B12 to do it's work as if folate too low B12 would be wasted. I am injecting every other day, didn't tell the Dr that though.... I hope to be able to tell them at some point but the trust is not there at the moment..... I haven't gone outside of range either since supplementing daily so not worried about taking too much, also I beleive it is also water soluble and not a problem as can't overdose....

[fbirder in reply to Galadriel1]

Putting more B12 into your body won't increase the amount of folate it needs.

Personally, I would drop down to 800 ug a day.

I would also experiment with methylfolate, just in case you are one of the small minority that will benefit from it.

[Galadriel1 in reply to fbirder]

I notice my last bloods done recently, folate has not been checked so will ask Dr to check my levels. I take on what you are saying and my aim is to stay in the high end of normal, if I go outside that I will reduce/stop the folic acid. I think it is working fine, I am much improved and notice the difference injecting every other day. I have days where I can actually function almost normally lol..... I do have some days when I try to do too much and then wiped out for next day or so..... it's a work in process......

[fbirder in reply to Galadriel1]

If you are much improved then that's the important thing.

If what you're doing is working, then keep on doing it.

[Galadriel1 in reply to fbirder]

I can even see the numbers changing in my favour frol low RBC in Nov, to just on bottom of range in Feb 4.15 and now a little more at 4.18, slow I know but going the right way. Think how slow it would be if I was only having 1 injection every 2 weeks. I am grateful for this site and that I found my way to it when I was diagnosed.

[Gambit62 Administrator]

Coeliacs leads to general absorption problems which can include affecting absorption of B12 so not necessarily a bad idea to test it and rule coeliacs out as a cause of absorption problems, particularly if you have multiple deficiencies - not clear from above if you are being treated for iron problems as well as folate. If you weren't eating gluten beforehand though it will be a waste of time doing the test as it needs to be done whilst you are still taking gluten in.

MMA and homocysteine will be raised in a functional B12 deficiency so if you are being treated but still symptomatic it would make sense to do them to rule out a functional B12 deficiency.

IFA negative doesn't rule out B12 as a possible cause of absorption problems because of the incidence of false negatives. IFA is also prone to false positives if done shortly after a B12 injection.

I think that the main problem with GPCA is that it is prone to false positives rather than false negatives but that doesn't mean that a negative entirely rules out PA as a problem.

[Galadriel1 in reply to Gambit62]

THank you Gambit62 you've explained that well. I eat Gluten and have no issues with it as far as I know. I told Gastro that but he said he wanted to check to rule it out and that's what he was taking the blood for. I am phoning hospital to request a copy of all the lab results tomorrow. No iron problems or folate really, my level was always 'in range' but it wasn't very high and I knew I needed to supplement to enable the B12 to work so I asked Dr for 5mg daily and she gave in and gave me it. Slight success as she was trying to find something other than PA/B12d wrong with me (despite low serum level - 155) she seemed to be determined to 'prove me wrong' and find something else to explain my symptoms. My surgery have been very resistant to treat me....

[Galadriel1]

Hidden Thanks for that, will have my levels checked and make sure I stay within the range.

[Galadriel1]

UPDATE: G.P. appointment went well.... told him I was Self injecting since last year and he only was interested in checking that I was using correct needles and injecting IM as that is what is recommended. He also asked me to bring my auto-injector to show him how it works on next appointment. He also said there are others at the surgery who self inject B12! I was shocked no-one had ever mentioned it. Has also ordered the Thyroid anti-bodies tests which have never been done despite my requests to check throid properly and re-checking folate. He has asked me to chase Endocrinologist appointment, he seems genuinely interested in getting to the bottom of it all. Oh and I asked for a prescription for a sharps bin and got it. I like this Dr he listens...... Soooo relieved that he knows now. I don't feel comfortable not being completely honest so this is a releif for me. I will be in trouble when this one retires! I have gone through all the others at the surgery lol.