Can I receive B12 jabs while waiting for a gastroscopy?

Allergies, blood and immune system
1

My doctor says I have B12 deficiency, but I've tested negative for the autoimmune condition that usually causes it, and have absolutely no gastric symptoms, anaemia, history, or family history of anything obviously related. I'm not losing weight, am not on any drugs, and I'm otherwise healthy.

She wants me to see a gastroenterologist and have a gastroscopy, but my local NHS can't offer me even an initial appointment for three months, and I can't afford to go privately.

I am tired, weak, aching, breathless and can't sleep. My research suggests that prolonged B12 deficiency does permanent harm and may predispose me towards stomach cancer. I've already had these symptoms for 6 months or more.

I would like to have B12 injections in the meantime. Can you tell me if there is any reason why I should not?

2

Hi Bluemaran, Once you find you have actually been found to be deficient you absolutely should start to take the VB12. You also need to find out why you are deficient. Either way you should be getting B12 ASAP. It will take ages to get up to normal levels that can be maintained. This will be worse if you don't identify why.

3

Hi Madge, thanks for your support.  My old GP has retired, and her replacement (who I've met only once, and who has never examined me) was VILE to me from the first appointment - I have absolutely no idea why.  The practice is in chaos, the other doctor's appointment delays are over 14 days, if I see one of her associates I don't think they are going to challenge her...................and she is saying I can't have any B12 jabs until after I've had the gastroscopy.  I don't mind her being thorough, but I don't think it's in my interests to wait another 3 or 4 months without medication.  She will not discuss it, has undermined my confidence, and is likely to chuck me out if I pursue this.  Changing practice will only cause further delay.  I've tried to ask local specialists whether there is any reason why I should not have B12 while I wait for a gastroscopy (ie. will it interfere with their investigation), but when I do, they close ranks and won't advise me.  I feel utterly intimidated, and very worried.  Where can I get some views on this perfectly straightforward question?

4

Searching on the net and the literature, I can't find any reason why one wouldn't supplement. It sounds like they may have a suspicion about what is causing the deficiency, and may not want to alarm you, which is why they are not saying anything. You can probably then understand why the "band together". Whatever the cause of your deficiency I can see of no reaons why they wouldn't give you B12. Anyone else have an opinion on this?

5

Thanks for taking the trouble to follow up my concerns.  The possibility that she thought I might have stomach cancer had occurred to me.  But I've explained to her that I've never had any gastric symptoms, and I'm not losing weight - I wish I was. Nor am I actually anaemic - these are the three indicators for gastroscopy in the face of an unexplained low B12 reading.  In fact, apart from typical symptoms of B12 deficiency (fatigue, stiffness, numb and tingling fingers, burning hands and feet, loss of taste, leaky bladder, and "old lady brain"wink I'm fine!  Anyway, surely if she thought I had stomach cancer, I'd be at the head of the list, not three or four months down the line, at the back?

So the question remains: is there any reason why I should not receive B12 injections to prevent further damage, while I wait for the gastroscopy? 

She's even gone so far to suggest that, if I want to speed things up, I could go privately (which I can't afford).  So she clearly doesn't think there is much urgency! 

Being proactive, I've done my research, have sworn off all alcohol for the time being, am taking sublingual B12 bought from a pharmacy, and have stepped up my (already good) B12 dietary intake.  Incidentally, my doctor hasn't evening mentioned these three, perfectly sensible, measures - which strikes me as careless to the point of negligent!

So, the question remains:  Can anyone confirm whether B12 injections, received for a short period, three months prior to a gastroscopy interfere with the results?

6

Yes, I didn't want to mention the stomach/intestinal/colon cancer aspect, but you seem on top of that. The other reasons for mal-absorption would be Crohn's, any sort of inflammatory bowel disease, giardia, other intestinal parasites, taking gastric ulcer medications, medications for GORD, metformin, anti-epileptic drugs, possibly lipitor (although that is not proven yet, but it would be logical). Not sure why they would be doing the gastroscopy unless they were looking for cancer or for gastric ulcers, or Barrett's oesophagus. Your lack of energy could be due to unexplained bleeding in your intestine, which leads to blood loss and anemic type symptoms. If it is slight, and occurs high up in the intestine it may not show up in a stool test. My guess is that if you have bleeding (which is why they want to do the test) they will rationalize that you don't need the B12, as that is not what is causing the symptoms, and so it won't fix the problem. I don't know why they wouldn't tell you this, though.

7

You've done a wonderful job.  No digestive symptoms at all, good appetite, gained weight steadily for the past 3 years or more.  Not Crohn's (my ex had that for 35 years), no inflammatory symptoms, no parasites and absolutely no drugs - prescription or otherwise.  No ulcers (I had a boyfriend who had helicobacter pylori for decades before they discovered it was curable with antibiotics).  Never heard of Barrett's - but I'll read up.  The doctor's not suggested a stool test (if she suspected cancer, surely that would be the first thing to do) and I've already been blood tested and shown not to be anaemic.  So what?  Polyps?  But I'd at least have some discomfort.  And there's nothing.

It's a terrible thing to say, but the impression I got from my one and only meeting with this doctor, was that she had a nettle up her bum about something at the practice, and I was just the first person she could take a pop at - and she certainly did that.

I'm B12 deficient.  The quickest way to restore that (whatever the cause) is a short course of jabs.  It's cheap, commonplace and done at the practice, so no referral.  There are no dangerous side effects, and it's a damn good insurance policy against me developing something more serious as a result of the deficiency over the next 3 or 4 months while I'm waiting for the gastroscopy. 

And the question still remains unanswered: "Would a short course of B12 jabs, given over the next 2 or 3 weeks "cloud" the results of a gastroscopy in 4 months time?"  I just can't believe that.

The gastroscopy is a "visual" - and what's in my blood at the time is unlikely to alter the appearance of my insides.  OK, so they might take a biopsy if they can find something "unusual".   And they will KNOW I've had some B12 (when and how much) and would be able to take that into account.  It just doesn't add up.

On Wednesday (when I have an appointment with her, if she doesn't cancel it in the meantime) I'll be asking direct questions.  Wish me luck!

 

8

Hi, It looks like you are pretty much on top of everything except why the symptoms? So, the other things that can make you feel like you are B12 deficient are Hypothyroidism - it has a similar effect as you can't turn riboflavin into FMN and FAD, which are essential for energy production and for correct folate processing. The next is vitamin D deficiency. Your mitochondria "power-up" on vitamin D, with maximal output when your levels are above 100. You would probably have already checked this. The sypmtoms of B12 deficiency, hypothyroidism and low vitamin D levels are in many cases quite similar, and they are cumulative, so be down a little in all of them and you are much worse than deficiency in one. If you still want the B12 you could ask on Wednesday, or order some topical material from _____ . Otherwise I still can't see why you couldn't have the shots. Do you know your intracellular folate levels. If you have true b12 deficiency your intracellular folate levels will be low, as you need to process folate to polyglutamate too keep it in the cell. If you are low in methylcobalamin you don't seem to be able to do this.

Patient Moderator Comment: I have removed an URL (a link) from this reply as it is not suitable for inclusion within these forums, refrain from posting this information. If anyone is interested in this removed information then please contact the author via the Private Messaging system. Thank you.

9

Hi Madge.  My old GP ordered a full spread of blood tests (about 8 weeks ago), and I was told there was nothing to report, except low B12.  I'll ask for a copy of them on Wednesday - can my new GP refuse?

I will try again to persuade her about B12 jabs, and ask her where she got the idea I couldn't have them - at least a short initial course - in the face of a gastroscopy that's probably 4 months away. I'll ask about my intracellular folate levels too.   

If she refuses, I'll take up your suggestion to order from _____. 

By the way, I had a look at Barretts on line, and I think it's unlikely.  We've all experienced acid reflux at some time, but I'd say I've had "heartburn" on less than 5 occasions in my entire life - not recently either.  I sometimes vomit when severely stressed, but not often.  About 3 days ago, the glands in my neck came up and I've lost my voice (painlessly).  They've subsided now, but the Eartha Kitt impression continues! : )

Patient Moderator Comment: I have removed an URL (a link) from this reply as it is not suitable for inclusion within these forums, refrain from posting this information. If anyone is interested in this removed information then please contact the author via the Private Messaging system. Thank you.

 

10

Hi Bluemaran, still not sure why they don't treat the condition with B12. If you are using mixed ado/methyl cobalamin there is no evidence that you can over-dose with B12. Still I guess they want to find out why you are deficient. Whatever the reason, you will probably still need the B12. Sent you a private message with the URL

11

Cheers Madge.  Let me quote from her letter to me of 30th April 2014:-

 "I believe that if we give you B12 that it can alter results of their (the gastroenterologist's) investigations.  I would like a gastroenterological opinion because his chances of making an accurate diagnosis might be compromised".   In effect, she's saying that, if she gives me B12 now to correct the deficiency and ease my symptoms, it might either "cure" some existing lesion that already exists (yeah, right) or prevent one developing (which it actually might) and that she wants me to either STAY ill or GET ill over the next few months, to assist her diagnosis of the cause of my deficiency.  Well, b----r that!  What happened to  "preventative medicine"?   And for the next 4 months she's happy for me to drag myself around like an octogenarian slug - quite literally worried sick.  B12 jabs won't then reverse the inevitable damage done. If they could, we'd all be on them!   Has this ghastly woman such a towering ego that she'd prefer to study my decline than treat it?  That's been my impression from the outset.......................  I need an expert second opinion on what she "believes".

12

Hi Bluemaran, sounds like trying to fix an intermittent fault in an electrical system. You hope that it either gets better or worse, but doesn't stay the same. If it gets worse you can definitely fix it, if it gets better you don't need to. If it stays the same you can't fix it. Hopefully the medical system is a bit better than that. Do you know if you have any methylation associated mutations? These will all cause B12 deficiency in themselves. So too will low folate and low vitamin B2. You can see how some of these interact at _____ (that is if the moderator will let you look).

Patient Moderator Comment: I have removed an URL (a link) from this reply as it is not suitable for inclusion within these forums, refrain from posting this information. If anyone is interested in this removed information then please contact the author via the Private Messaging system. Thank you.

13

Hi Madge.  Interesting analogy!  I'll ask her to:

- back up her statement that it might "compromise" a gastro diagnosis,

- provide a copy of my test results and/or order further tests, 

- and provide advice (dietary/supplements/"lifestyle"wink.

  

The moderator removed the site you suggested, so would you be prepared to send it via the "Private Messaging" system mentioned?  I don't know how that works.  

14

STOP PRESS: The postman just brought me a letter, dated 2nd May (responding to my letter last Friday), in which she says:

"I've had a long discussion with the gastroenterologists.  You can start B12 injections pending further investigations.  They are quite puzzled about the confusing picture in your blood tests.  Let me know whether referral (sic) NHS or private, and to (a choice of two hospitals).  B12 injections are given three times a week (!) for two weeks, then every 3 months after that.  Please do another blood test for B12 about a month after the last of the first 6 injections.  KR (practicioner's name).  PS: You also need to take iron tablets while on B12 (for the time being at least, even though you are not anaemic)." 

HIGH FIVE!

With your support, MadgeC, I have succeeded in making a GP completely reverse their opinion, and to start treating me properly!

A message to all of you fellow sufferers out there: Don't take poor diagnosis and treatment lying down.  Doctor's are fallible.  Do your own research, get support from websites like this, and challenge anything you don't understand or don't agree with.  Take control!

I've just knocked 3 or 4 months off the proposed delay in getting treatment.  Now I'll get hold of my existing test results, and study them in detail.  MadgeC you are a STAR!

15

Hi Bluemaran, well done in your efforts. Let us know how you go on the injections. Will be interesting to follow up. Good luck with the fibre optic gut device (LOL). If you still want the site let me know, but it should be in your private mail.

Maybe at this time Robin would have said "Holy Methylation, Batman"

16

Hi Madge.  It's such a relief!  Mind you, I bet she's gonna stick the needles in hard and waggle them about in revenge!  First one is teatime on Thursday.  How quickly do you think I might feel an effect?  Should I get my entry for the London Marathon in the post? : )

17

Hi Bluemaran, You ask a very good question, with a highly variable answer. The only true answer is "it depends". Thus it depends upon how bad you are, it depends upon your dietary or supplemental folate levels, it depends upon the damage that you have done to your mitochondria and to your neurons, it depends upon your methylation status, and it it depends upon your B group vitamin intake. Hence to maximize the effect, make sure you have a good level of B group vitamins (standard multi should be OK). If you have methylation issues, then you probably need 5MTHF. If you are really deficient and your intracellular GSH level is low, you will need the combination Ado/MeCbl mix to get maximum effect. FYI 50% of people who are B12 deficient don't respond to CNCbl as they can't kick the CN group out. It is marginally better with OHCbl as once again you have to reduce the cobalt atom from Co+++ to Co+ in order to make Ado or MeCbl. You can't do this if your intracellular reducing environment is not high enough. Most doctors don't realize this, and so if they inject and it has no effect they simply say it can't have been B12 deficiency. Hence, it depends.

18

Hi Madge, That's a lot to digest (no pun intended!).  I asked about my folate levels and was told they were normal.  With a little resistance, I obtained my blood test results - but have just noticed they are the wrong ones - from February last year (makes you wonder if they've been looking at the wrong set all along).  So I'll have to ask for those again before I can start looking into the technical stuff.  The comparison between the two might be interesting. 

I actually had my first jab this morning and have 5 more scheduled at intervals over the next two weeks.  I've also got to collect a prescription for Iron tablets (no Vit C) to pick up.

I got a better "reception" from the GP this morning, but she's still on probation!  : )

19

Hi Bluemaran, sounds like your sense of humour is returning, so maybe the first jab has worked, judging by your "jibe". You identify a couple of factors that are probably not well understood by all. Cobalamin via its association with methionine synthase is essential for correct processing of dietary folate. In the few studies that have actually analysed this, it appears that over 90% of dietary folate is in the form of 5MTHF. In order for you to convert this to THF the methyl group is stripped off and transferred to cobalamin in methionine synthase to form methylcobalamin. This methyl group then goes into the methylation cycle.  Measurement of intracellular folate helps you to determine how effectively this is happening. The technical "stuff" is on quite a few web-sites, but one I prefer is at http://www.vitaminb12deficiency.net.au/ .

You didn't say whether you got the energy boost that you expected from the jab or not. 

Hopefully you can identify where the problem is with your B12 or else you will be on B12 jabs or other forms of B12 for life. Good luck,

20

Hi Madge,  Got that site, thanks. Here are my results:

                                        20/2/2013             19/3/2014

FBC                                 normal                  normal

HB                                    11.4 g/dL              125 g/L           (115 - 164)

WBCs                               5.8 10*9/L              4.1 10*9/L     (4.0 - 11.0)

Platelet count                   277 10*9/L             262 10*9/L    (150 - 400)

RBCs                                4.07 10*12/L          4.54 10*12/L (3.90 - 5.60)

Haematocrit                      0.345                     0.371             ( 0.36 - 0.7)

MCV                                 84.7 fl                    81.8 fl             (78.0 - 96.0)

MCH                                 28.1 pg                  27.5 pg          (28.0 - 34.0)

MCHC                               33.1 g/dl                337 g/L          (320 - 360) 

DWCC                              normal                   normal

Neutophil count                3.1 10*9/L              2.2 10*9/L          (1.9 - 7.5)

Lymphocyte count            1.7 10*9/L              1.4 10*9/L          (1.0 - 4.0)

Monocyte count                0.6 10*9/L              0.3 10*9/L          (0.2 - 1.0)

Eosinophil count               0.4 10/9*L              0.2 10*9/L          (0.0 - 0.4)

Basophil count                  0.1 10/9*L              0    10*9/L          (0.0 - 0.1)

Now, I'm waaay out of my depth with the science, but I can see that all my readings are close to the bottom end of the normal ranges. 

What's happened during that time?  I've had a D&C for heavy bleeding (probably fibroids) and it's stopped.  Menopausal symptoms have started and I've gained weight. So it makes sense my HB and RBC, etc. are up.

All my DWC's are down.

Oh, and I asked her "Is it a good idea for me to forswear all alcohol from now on?" and she said no - which is cheery!   : )