GP questioning why serum b12 above range if body gets rid of excess b12.

[Vicky2822]

Went to gp yesterday with my daughter to have her 12 weekly jab. Her last blood test ( meant to be checking ferritin but did b12 even though she’d emailed saying not to check it). Showed b12> 1500 - this test was 2 wks after an injection at the gps (but she SI anyway which they don’t know as would be like a zombie if she had to wait 12 wks - they won’t budge off this).

Nurse said she didn’t need jab as levels high, I went into a long dialogue about serum levels not being reliable as to what the body could use, how close it was to their last jab at doctors, said she was taking sprays etc in between etc. Nurse got a GP who said they like it to be at the top of the range (say 900) but it could be 3000, 40,000 for all she knows as lab only goes up to >1500 and why do you want too much of anything in your blood even if it is supposedly safe. I said about the body peeing most of it out but she questioned why serum levels remain so high then? They want my daughter to have her blood test on the day of the next 12 wk injection to check levels ( obviously it will be high as she SI). Is there anything I can say/do to stop this as I would like her to keep the gp injections so they are on her records. I also said NICE guidelines said checking serum levels was pointless after start injections but she said it tells them to check it once to see the level after 3 mths to check its working (she started on loading in Nov and the last blood test got messed up so was two weeks after a jab at gps).

Nurse also said they want to know why she is deficient as might be diet (had coeliac, intrinsic factor and h.pylori tests all negative). I said she obviously has an absorption problem as it isn’t diet and lots of people never get a definitive reason. Also said she could have PA even if test negative. I got the impression they didn’t like the fact I knew so much at one point I was told “I am a nurse you know”. But this obviously doesn’t help my daughters situation. Nurse said they will do more tests, but other than partial cell not sure if there are any?

Thanks in advance. I don’t get why this is so hard. Nurse even said b12 is totally harmless.

[Nackapan]

It shouldn't be such a struggle. Mine was also above 1500 a week after an injection. The lab just did it as on a request apparrently before and it was too soon to repeat. So computer brought it up as outstanding.

Try and see this through with one doctor. I got in a right mess as 3 doctors had refused to reinstate loadng doses and insisted 3 monthly only.

A gp them read the bnf guidelines in front of me. Also another gp on the phone had a complete turnaround.

Gp appointment needed. Go armed with info but I concentrated on symptoms and it was the only thing that was getting improvement. Say you don't want to have to self inject??

Otherwise it's taking it into your own hands and doing just that. Hope it goes well

[Gambit62 Administrator]

article on variation in rates of removal of B12 post injections

ncbi.nlm.nih.gov/pmc/articl...

[Cherylclaire Forum Support in reply to Gambit62]

Thanks for that, Gambit, never seen this before :

This research is using cyanocobalamin, but because it discusses range of absorption and retention ability, presumably could as easily apply to hydroxocobalamin in that there would be no reason to assume that cobalamin in a different form would have a narrower range of ability to be retained by a similar group (?)

Interestingly, this research was not limited to those with a cast iron Pernicious Anaemia diagnosis, and so can be seen to apply also to those currently "in limbo" - or those waiting 10+ years for a PA diagnosis !

Vicky2822 : My serum B12 tests, once treatment started, were always >2000 ng/L , which is why my GP stopped testing . She knows that I self-inject every other day, have done since Sept 2017, which enabled me to return to work after 15 months off sick. I have yet to have a symptom-free day, which is my new goal.

I was diagnosed by my GP as having B12 deficiency, then functional B12 deficiency because my methymalonic acid levels (MMA) were consistently "raised" at 350 - 400 nmol/L with a range of 0-280 nmol/L after injections began. No reason has been found for why I need so much B12 or why MMA is raised, but extensive testing has ruled out many other alternatives: coeliac disease, SIBO (small intestine bacterial overgrowth), IBS (irritable bowel syndrome*) - conclusion of gastroenterologists, but not the opinion of my GP or dietitian.

I also wonder why there is so much fuss and so much time and money spent trying to prove it's something else - almost anything else. Is it a lack of recognition of the range of symptoms involved / division of investigation of symptoms between various specialists or both ? It can't be money: this is all costing a fortune.

A self-administered B12 injection is still under £1.

It has been a long, tiring and very frustrating journey back. Keep going. Keep looking for answers. The people here have helped me and can be a huge support whenever you need it. Don't feel alone in this.

* IBS is a syndrome (set of symptoms) and so still falls short of a diagnosis. It seems to be code for "I'm Bl**dy Stumped" !

[waveylines]

The conclusion Ive come to is GPs and other medics have become so reliant on blood tests, x rays etc that they cannot look beyond them at all at anything else incuding signs and symptoms. It is medicine by numbers. I think theyve forgotten that they should be aiming to make you feel well!

Medicine is as much an art as a science. The art if it disappeared over a decade ago!!

[Vicky2822 in reply to waveylines]

I totally agree, if your in range your fine no matter how many symptoms you have (obviously all in your head so you must be anxious or depressed!l.

Funny how it doesn’t work the other way, when my daughters blood test showed she had b12 below the range I was told it was fine “don’t chase the numbers” and get her a multi vitamin. I just think they don’t care any more, it’s all about saving money and doing the minimum they can to get you out of their office.

[waveylines]

Absolutely spot on Vicky!! I could barely walk, had full body tremors, incontinent, blurred vision, loss of balance, extreme fatigue, weakness etc... I looked really ill & all my symptoms pointed to b12 but my blood test for b12 was low but in range. Wouldnt precribe b12 jabs despite the guidance which GP knew about...... referred me to a neurologist with a 6 month wait!!!! I didnt wait but self injected & told her what I was doing. Its outrageous.....took 9 months before nhs presribed the jabs but only then because the neurologist back me & I pushed hard. The doctors could see the difference the jabs made and were amazed but still wouldn't prescribe until the neuro wrote to do so. ! All bonkers!!

Private GP told me not to wait.....which encouraged me not to.

Patient heal thyself......

[Gunj_redjem in reply to waveylines]

How often do you inject? and in how much time did your symptoms improve?

[waveylines in reply to Gunj_redjem]

Some symptoms improved really quickly within a few weeks the blurred vision & incontinence had gone, others have improved over time. I didnt keep a record but Ive been injecting for 11 months now mainly alternate days but moved to daily two weeks ago.

[Gunj_redjem in reply to waveylines]

Your levels must b sky high then

[waveylines]

Probably though Ive gathered that once injecting its nothing to do with levels......