B12 injections

[Button11]

Hi all.

Last April I was feeling very poorly after the loss of my grandad and I had bloods done which showed I had low b12 188 (200 lowest) and low vit d. My insintric factor was ok though. I had 6 initial injections(last sept) and then told I didn't need more as it was just a natural drop. I then moved and have joined a new surgery and he has agreed after further bloods showing my b12 to be 400 something (November) it was just a natural dip.

Then I had private bloods in march (mostly for thyroid) and b12 was still in normal but had dropped again not massively but still a dip and I was also low in folic acid and vit d still

Any ideas? I've now been given anxiety meds which I really don't want to take and haven't yet and told it's just anxiety and ibs but I'm not sure

Results

June 14- folate 9.2 (3.1-20)

B12 276 (187-883)

May 16 folate- 7.5 (5-10)

B12-188 (190-660)

Vit d- 49 (50-174)

Dec 16 b12-410 (187-883) had last injection September

March 17- B12- 334 (197-771)

Folate 3 (3.9-26.8)

Vit d 37.5 (25-75 or below 25 severe)

[holehead]

Hi Button 11

It's hard to wade through the complexity of our Health Service sometimes particularly in the area of B12 but if you are able to post some results from your blood tests with the ranges it would help others here to support you.

Mark

[Button11 in reply to holehead]

holehead hi mark I've just updated my results thank you for responding

[clivealive Forum Support]

Hi Button11 low folate, low B12 and low Vitamin D - on antidepressants and with IBS and possible thyroid problems?

Folic acid and B12 work with iron to make red blood cells. Some Antidepressants and IBS can affect the absorption of B12

It's no wonder you are feeling down on top of your Granddad's death.

I'm somewhat amazed your new doctor has not at least addressed the low folate and Vitamin D.

I'm not medically trained but there are others on here who will be able to give you good advice.

[Button11 in reply to clivealive]

clivealive Hi,

I'm not taking the anxiety meds yet I very reluctantly took them on prescription this week after the doctor was at a loss as to what else to do as all my other tests were normal so I said I'd try them to see but I'm prettified to take them if I'm honest.

I'm talking vit d and folate now and he said he would retest end of May and see but I would have only just have finished the course of folate then not sure if it would be to soon. I started taking probiotics which I think have helped with absorption but not sure

[JGBH in reply to Button11]

Button11,

Perhaps it would be a good idea to be honest with GP and tell him that after consideration you do not feel the antidepressants will solve your problems. However a full investigation to find the root cause of the problem is required so that your life can get back on track.

Naturally the loss of someone dear is always a difficult time.... It will take time for you to adjust. However if you have any neurological symptoms, etc... you need to be proactive with GP... sorry.

Good luck and sending you a hug.

[JGBH]

Hi Button11,

First - you do not have to accept antidepressants if you know they are not really needed. They are needed in some cases of course. GPs are very quick to push these onto patients... then once you have a label of anxiety/depression they do not have to listen to anymore symptoms, so beware. Apparently the UK is the European country where the highest number of antidepressants is prescribed... that speaks for itself.

Second - do you have any neurological symptoms: pins and needles in hands/feet/legs, tinnitus, dizziness/loss of balance/fainting, foggy mind, etc. on top of exhaustion and no energy at all? If you have any of this symptoms, especially neurological symptoms you should push for B12 injections. Write to GP listing all your symptoms and look for NICE guidelines (as well as British Haematology Society and PAS - pernicious anaemia society), highlighting all relevant bits to your condition then add these guidelines to your letter.

I am sure you will get more support from members of this forum. They have helped me and many others. Do hope you can get through to your GP, but it is difficult.... so do not give up.

Good luck and best wishes.

[Button11 in reply to JGBH]

JGBH thank you for your reply I did have the tingling etc before the injections but that went but I still get strange senations I also have raynuads very cold extremities. Yes brain fog i feel like I can't think at all my partner asks me "so what you been up to today" and I cant even think! When it was a couple of hours ago! I took him a list of symptoms and he didn't even look at it as every test I've had has been fine as you can see by my results I've just put up I myself think it's something to do with my immune system and thyroid but he won't have any of it as all but my thyroid antibody tests were clear but he thinks the antibody test is a waste of time ( had it done private)

Thank you for your help

[JGBH in reply to Button11]

Sadly it appears the majority of GPs in the UK DO NOT listen to their patients. They are not really interested, it's a fact. It is the reason for which one has to "fight" them all the time, even when feeling so exhausted.

Because GP has ignored your list and dismisses the antibody test for thyroid (let's face it... the easier and cheapest way out - anyway GPs know precious little about thyroid and need for B12, etc...) it is quite obvious he is unwilling to help. There is something rather worrying about the way doctors treat or rather ignore patients' wellbeing in the UK. What is going on? So you will need to write a letter to GP as explained in previous post. Don't feel intimidated by bullying unconcerned GPs: they are good at patients bashing! Be polite but firm in your letter. I understand letters have to be included within your notes. In fact you could add that you would like your letter and enclosed guidelines to be placed within your medical records as you are very concerned that your wellbeing might be put at risk should you not get B12 injections.

Take care.

[Gambit62 Administrator]

IFA coming back negative is a long way from ruling out PA as a cause - it gives false negatives 40-60% of time depending on assay method. Also, PA isn't the only possible absorption problem - although some are treatable (eg h pylori infection) many aren't and require injections for live.

Your first GP has obviously assumed that the B12 deficiency was dietary - which I am assuming that it wasn't or was one of the many that is very confused and thinks that negative IFA rules out an absorption problem - which you will see from above is far from the case.

Your first GP may also have been one of the many that is under the mistaken impression that the symptoms of B12 deficiency are all caused by macrocytic anaemias (enlarged and slightly rounder red blood cells than normal) whereas its just another symptom that may or may not cause the other symptoms. Your second GP may be in the same category though with low folate also causing macrocytic anaemia and similar symptoms it is a bit difficult to interpret everything. Note: 30% of those who are B12 deficient don't have macrocytic anaemia.

Many people need very high levels of serum B12 after they have received loading shots - and on this basis your current results are actually quite low. You are highly symptomatic - and symptoms are very important when treating a B12 deficiency - though the overlap with thyroid makes interpreting them difficult - and also with folate.

Getting B12 into your blood is only one step in metabolising B12 - there is also getting it from blood to cell and then actually using it in cells. Having high levelsof B12 in your blood can cause problems with the transfer from blood to cells in some people.

Suggest that you take a good look at your diet and evaluate the folate and B12 content. If your diet is good for both then that points to an absorption problem - which could still be PA. Other possibilities include h pylori infection and coeliacs. If your thyroid problems are auto-immune then that would point more to PA and/or coeliacs as auto-immune problems tend to come in clusters.

Assuming that the problem isn't diet:

Write to your GP pointing out that you have absorption problems, and the problems with using B12 serum as a marker for B12 deficiency - particularly post loading doses and then ask to see them to discuss.

Personally think you should be on maintenance doses of B12 - if your GP isn't prepared to accept that - in light of the problems with the B12 serum test and the fact that it is even less of a guide after loading shots - even a year after loading shots - and the fact that you have other absorption problems then would suggest you ask for MMA test to clarify (homocysteine will be low as well but inconclusive in this instance as you are also folate deficient).

[Button11 in reply to Gambit62]

Gambit62 waw thank you I think I'll have to read that one over several times. I've had tests for Celiac which were clear but I'm now trying to go gluten free incase it's the thyroid antibodies. I've also been tested twice for the h p bacteria and it came back negative both times.

Thanks again I'll read over your comment again

[JMN2017 in reply to Gambit62]

Gambit62

Something in your last para has confused me. May I PM you to discuss it, please?

JMN

[Gambit62 Administrator in reply to JMN2017]

what has confused you - may not have expressed very well

[Button11 in reply to Gambit62]

Gambit62 no nothing just the length of it need to make sure I read it a couple of times to make sure I read it properly

[JMN2017 in reply to Gambit62]

Gambit62

Thanks

You wrote -

"(homocysteine will be low as well but inconclusive in this instance as you are also folate deficient)"

Having checked it out, my understanding is that treatment of very high Homocysteine is prescribed Folic Acid which leads me to wonder that, as my Folate levels are quite high (but 'within range'), might this high level be 'suppressing / holding down' my Homocysteine level?

This theory (of mine) seems to me to be contradictory to what you posted so have I 'lost the plot'?

I'm interested in understanding this because my Folate is very high (out of range), B12 low (borderline/out of range) and Homocysteine is 14.6 (0.0-16.0) so my GP feels there's 'nothing more he can do' I feel he means 'nothing more he wants to do! So, I feel rubbish, to say the least, and he's not prepared to look into it further, or refer me, in spite of me telling him I've not got much of a life, feeling like I do (like so many others, of course) I am in the process of optimising my vitamin levels generally, by multivitamin tablets and specific vitamin tablets too.

I'm looking for more reasons/justifications to attempt to convince my GP to at least give me a trial of B12. Currently, he feels all my tests are 'normal' and 'within range'

Many thanks for any help/advice

[Gambit62 Administrator in reply to JMN2017]

you really need to address your question to someone who knows a lot more biochemistry than I do but my understanding is that processing homocysteine back into a useful building block involves vitamins B12, B9 (folate) and B6 - so,in theory, deficiencies in any of these vitamins will result in homocysteine building up.

folate isn't stored in the same way as B12 - neither is B6 so both will be more closely related to dietary intake than B12 - so if your levels are high after supplementing then supplementing is likely to be the reason for the high levels.

This study looks at the effect of folate intake on homocysteine levels. supplementation in the population reviewed - elderly - improves homocysteine levels for those who have a deficiency but seems to have no appreciable effect otherwise. It also discusses the reasons why this may be the case.

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

[JMN2017 in reply to Gambit62]

Gambit62

Again, thanks

High folate was both with and without suppliments, in fact. I stopped taking suppliments after getting first results and was pretty much the same after 6 months without suppliments.

Yes, I'll check you link out, thx

Many thanks