New B12 Defiency diagnosis

indenial99

Hi All,

Im my 30's and I've recently been diagnosed by my GP as being B12 Deficient. Levels went as low as 178. Previous test was 198. He seems to think that I probably have some Auto-immune condition that is causing it, and I have to take b12 shots every 3 months for the rest of my life.

I've been researching sites a bit and some of the possible causes are :

1. Pernicious Anemia. (i've had a test for antibodies - Negative)
2. NSAIDS (I'm on long term arcoxia - but only take them when needed)
3. Chrons
4. Celiac Disease (I've had a negative blood test for this also)
5. Vegan / Dietry ( Neither an issue)
6. Bacterial overgrowth (Heli. P) I have had this previously about 10 yrs ago, cant say i've been checked for it lately. (suggested to gp that he give me antibiotics to rule this out, but he declines saying it'll kill all good bacteria)
7. low stomach acid (think this might be a possibility,as prone to constipation)
8. GI surgery (n/a)

http://www.b12d.org/what-causes-b12-deficiency

I've always had mild stomach issues, and have in the past been on losec and zoton, bloated stomach etc.

I've also had an elevated Ferritin level for the last 1-2 yrs, but this is gradually reducing It went as high as 950 but is now at 550.

I'm not a very observent person, in that I think that I've shown symptoms of b12 for years but as they were gradual in their onset, I found I got used to it, and didn't see/notice the symptoms as abnormal. I've been very foggy and forgetful, moody/snappy, exhausted (I put this down to very high weight BMI), maybe a little depressed/anxious, and lately I've had very bad hip pain(Both x-ray and MRI of hip were clear). A few days after my last injection, the hip pain was gone within 2 days, miracle shot... and I started feeling great, happy, energetic etc.

I was referred to a Haemotologist over the ferritin, and he picked up on the low b12, and passed me back to gp for b12 shots. I've had the 6 shots over 10 days initially, and one topup about 5 weeks ago. I do find that the shots make a difference, and I'm more energetic and more upbeet, and better to be around(so I'm told).

Sorry about the spiel, but want to give as much info as possible.

So I have this, and what's bugging me is that I don't know the root cause of it is. I suppose I'm hoping that it might not be a permanent thing.

I've had a blood test for Celiac and Pernicious anemia - both negative.

My gp is using cynocobalamine(i've read this is inferior to hydo..) and is reluctant to give me a shot any sooner than 3 months. He doesn't seem driven to identify the cause, but is just happy to continue with shots.

I was previously taking b complex dropper under tongue but it contained cynocobalimine, and I read it may be dangerous to take large amounts of other b vitamines/folate. I did notice orange urine. so I've now been taking hydrocobalamine tablets, under tongue every day for last week, dont know if it's being absorbed or not.


I've seen the Schillings test and am wondering if this is still done in ireland ?

Basically my questions are if there any other B12 deficient boarsie's :

1. can you advise what test you had done from when you found out you have it
2. what are essentials to be testing when doing blood test ?
3. How often do you get bloods done?
4. Do you test MethylMalonic Acid(MMA) and Homocystene ? Are these blood or urine - my gp is unfamiliar with these and shunned cyting the costs to the labs and the lashback from the labs.
5. Have you heard of Active B12 test, and do you have it done ?
6. Is a stomach scope the next logical step iyo ?

Thanks,
INDie

GiraffeStyle

Hi InDenial,

I was diagnosed with B12 deficiency and iron-deficiency anaemia in May of this year. I get a B12 shot every month at my GPs and he tells me every time I go in that if I feel I need a mid month top up to just pop in so I don't know if your GP is right in telling you once every 3 months is enough?

You don't say if you're male or female, the diagnostic testing I've had so far includes a pelvic ultrasound and an upper gastrointestinal endoscopy. This ruled out any gynecological issues and coeliac disease. I'm going back for a colonoscopy to rule out internal bleeding and inflammatory bowel disease.

I had follow up bloods done this month, thanks to the B12 shots my B12 levels are now (barely) in the safe zone- 215, but my iron count has gotten even worse since May depsite me taking 4 supplements a day.

Because of this I'll be seeing a haemotologist in January as my GP feels it's out of his hands now. But since my diagnosis he has been so supportive and I never felt he wasn't interested in the root cause of the deficiency- would it be possible for you to switch GPs maybe?

I would definitely say you need to push your GP to refer you for an endoscopy and the colonoscopy, with your stomach issues it is the next logical step. Will you have a follow up with the haemotologist? If so I would get on to them to be pushing for a diagnosis of the root cause also.

Hope this helps and best of luck!

Alun

What units are you guys using when referring to your B12 levels? I understand there are different ones used (pmol/L, pg/mL).

I ask as I had a complete blood panel done a few years ago when my doctor was (unsuccessfully) trying to diagnose some very vague and low-level neurological problems which still persist to this day undiagnosed, and I see a value of 207 pmol/L with an allowable range of 139-651. Does that tie in with the figures you're seeing?

GiraffeStyle

I think my level was 215 pg/mL just over the recommended 200 pg/mL but I'm not really familiar with the various units used TBH! I have no idea of pmog/L sorry.

Alun

The Mole (abbreviated to mol) is a unit that is based on the number of atoms or molecules in a sample, rather than mass, see http://en.wikipedia.org/wiki/Mole_%28unit%29.

Anyway I have just found that for serum B12 levels, 550pg/mL is equivalent to 400pmol/L or a conversion factor of 1.375, so that would make my result equivalent to approx. 285 pg/mL. I wonder would that still be low enough to cause any symptoms.

miss no stars

Alun wrote: »

The Mole (abbreviated to mol) is a unit that is based on the number of atoms or molecules in a sample, rather than mass, see http://en.wikipedia.org/wiki/Mole_%28unit%29.

Anyway I have just found that for serum B12 levels, 550pg/mL is equivalent to 400pmol/L or a conversion factor of 1.375, so that would make my result equivalent to approx. 285 pg/mL. I wonder would that still be low enough to cause any symptoms.

Yeah it generally would be. My levels were above 200 once and I was told I was still considered deficient as it was so far off the optimum and I was symptomatic (frozen and constantly exhausted).

Alun

Interesting, my symptoms aren't as bad now than they were at the time the tests were done, so I'm not that worried at the moment, but it's certainly something to be aware of should they get worse in the future.

LegacyUser

Exactly two years my b12 levels were 160. I was given five injections over two weeks. Doctors could find no underlying condition and so I have to have my blood tested every six months and haven't needed any injections since. I hadn't felt well for the previous two and a half years prior to being diagnosed.