Some help please GP going to stop Injections after ten years due to high B12 in blood

[maxlilly123456]

My husband has been having B12 injections for about ten years now, we went to our GP due to my husband having the same symptoms that he was having befor he started having injections, the GP sent him for a blood test when it came back the GP said his B12 was High and his folate was low, he feels he should stop the B12 injection because the symptoms my husband is getting may be because his B12 is high I am not sure this is right, I was wondering if his B12 in his blood is high because B12 isn't getting into his Cells, my husband has just had an MMA bllod test that we paid for privately because of our concerns, if when we get the results he has no B12 in his cells would that be cause of him having high B12 in his blood, also would that mean staying on B12 injections, more often than every 12 weeks sorry for all the quetions regards shirley

[clivealive Forum Support]

Hi maxlilly123456 I'm not a medically trained person but my first thought is that your husband's doctor should consider prescribing folic acid.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Do you remember why your husband was given B12 injections in the first place - and - how high is high in the last blood test?

Does the doctor know the neurological symptoms you husband is having because they are what need treating regardless of his B12 level?

Please post the results of the MMA test when you get them as there are others on here who will be able to give you good advice.

[maxlilly123456 in reply to clivealive]

Hi Clivealive, thank you so much for your reply, he is getting neurological symptoms, and his level is

B12 1250 Range ( 187 - 883 )

serum folate 2.9 range ( 3.1 - 20.5 )

Red Blood Cell count 4.1 range ( 4.29 - 5.70 )

The lab said the MMA test would take about 10 days but we have paid extra for ti to go to a Dr for his / her comments so may be about 12 days he had it done Wednesday

[maxlilly123456 in reply to clivealive]

Hi Clivealive, sorry I forgot to say it was anemia

[clivealive Forum Support in reply to maxlilly123456]

Ah! but was it a definite diagnosis of Pernicious Anaemia (or P.A.) in which case B12 injections are for life?

The word "Anaemia" in P.A is a bit of a misnomer and gets confused with iron deficiency Anaemia.

Is it possible to check this out? I doubt your husband was given B12 injections for Iron Anaemia.

Goodnight for now as I'm off to bed.

[maxlilly123456 in reply to clivealive]

Hi Clivealive, I hope you see this post tomorow as far as I remember it was Pernicious Anaemia and the DR at the time did say he would be on them for life, thats why I'm not sure about the DR we have now saying he may stop them, I will post the MMA results when they come, thank you for you reply and have a good night sleep.

[clivealive Forum Support in reply to maxlilly123456]

Hi and good morning maxlilly123456 if you are at the same surgery as ten years ago your now doctor should still have access to your husband's notes to confirm the P.A. diagnosis and Gambit62 has explained things far better than I ever could.

I wish you both well.

[Gambit62 Administrator]

GP definitely should not stop B12 injections because readings have come back high.

should be treating folate deficiency - though you can get supplements from supermarket that would probably help - without resorting to the very high doses that would be provided on prescription.

Because folate and B12 are used together for a lot of key processes the symptoms of B12 and folate deficiency have a huge overlap.

high levels of B12 in serum can cause a functional B12 deficiency (some people respond to high levels in serum by shutting down the mechanism that allows b12 to be transferred from blood to cell keeping the B12 in your blood but leaving your cells without enough B12 to do all the things they need to do. However this is more or less inevitable if you have an absorption problem so need B12 injections to get B12 in and generally the most effective treatment is keeping levels in serum so high that there is more in your blood than the reaction can stop so enough gets through to cells. Stopping injections will just leave your cells without B12 for a very long time and runs the risk of permanent damage.

MMA test will show if there is a functional B12 deficiency as it will come back showing raised levels. If it doesn't then the most likely explanation for the symptoms is the lack of folate - meaning that cells are unable to use the B12 they do have. the process that recycles MMA is one that doesn't use folate which is why it is a good indicator for whether there is enough B12 getting through to cells.

Low folate isn't going to be helping even if it isn't the cause of the symptoms.

Symptoms of folate deficiency tend to develop much more rapidly than the symptoms of a B12 deficiency (the body doesn't keep stores of folate so is much more responsive to lack in diet) so if the onset of symptoms was quite quick that would point to folate being the problem.

[wedgewood in reply to Gambit62]

It's always so informative to read your replies Gambit62. I'm learning more and more . We are lucky to have you on board ! Thank you so much .

[JMN2017]

Hi maxlilly123456

Your folate level is very low and the symptoms of Folate deficiency are very similiar to that of B12 deficiency - possibly because folate is needed for B12 to work.

May I suggest you check up on the symptoms of Folate deficiency as I suspect you may find your answer.

Good luck

Edit - Gambit62 posted as I was typing this post, giving much better information

[maxlilly123456]

Thank you gambit62 that was very informative and jmn2017 I am very grateful, my husband has been quite well for the last ten years on his injections instil about 12 weeks ago when he had symptoms come back, painful feet, bad memory sweating falling asleep at 8'clock in the evening, no energy, and so on, so it did come on quite quickly you may be right about the folate, he also is low on vitamin D, but the Dr never said anything about it, we only know because I asked for a copy of the blood test sorry this message is late

[wedgewood]

If you can't get your husband's injections reinstated , the PAS will intervene with your GP ,if you are a member . They have achieved a lot in this direction .

As a last resort there is always self- injection . It is cheap and so convenient .

Don't despair , you have friends here !

[Sleepybunny]

Hi,

I'd suggest joining the PAS (Pernicious Anaemia Society) and giving them a ring. I think they have lots of phone calls and may not have the resources to cope with non-members' calls as well as those of members.

PAS membership

pernicious-anaemia-society....

PAS website

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left.

There are stories on Martyn Hooper's blog about how PAS has helped people whose injections have been stopped. Martyn Hooper is the chair of PAS.

martynhooper.com/2017/06/22...

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

PA requires treatment for life.

In UK, the info on recommended treatment for PA and B12 deficiency is in

1) BNF (British National Formulary) Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

This is a slim book that all UK Gps will have access to and it lists recommended treatment/drugs for various conditions. There is very likely to be a copy of this on GPs desk or bookshelf. In BNF, it mentions treatment for macrocytic anaemia and PA can lead to macrocytic anaemia (BUT doesn't always). It's possible to get own copy of BNF from a good book shop or popular internet retailer.

2) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

UK b12 document that outlines diagnostic and treatment process for PA and B12 deficiency. Info on UK B12 treatment is about a quarter through document. I'd suggest reading the whole document. I gave a copy to my GPs as they seemed unaware of it.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Outlines when to diagnose PA and treatment of B12 deficiency

Neuro Symptoms

Does he have any neuro symptoms? In UK B12 deficiency with neuro symptoms is supposed to be treated more intensively..see BNF and BSH links.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Folate Deficiency

patient.info/doctor/folate-...

Management section in above link emphasises need to treat any co-existing B12 deficiency if also treating folate deficiency.

Access to medical records

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

May be worth trying to track down evidence of original PA diagnosis as in my opinion it's a lot easier to argue for reinstatement of injections with a confirmed PA diagnosis.

Unhappy with treatment?

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Person who runs website can be contacted by e-mail. Details on website.

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment

hdapatientcaretrust.com/

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. I gave a copy of this book to my GPs as it's up to date with UK B12 guidelines.

"Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

I am not medically trained just someone who has struggled to get a diagnosis.

[paddyfields]

I have not been on this site long but I have only seen reference to the GP. Is there not a specialist one can ask to be referred to? I have stopped B12 injections at my instigation because of high readings th e last two times the injection was due and initially was pleased to have got shot of one of my meds but now I see the situation is far more complicated Low levels showed up in blood test originally four years ago but no identifiable symptoms . I already have Parkinsons, diagnosed 8 years ago and no doubt about the dx.,. which muddies the water somewhat as far as neurological symptoms are concerned and there are a number of reasons why I might suffer from tiredness such as PD meds, steroids for Polymyalgia. Thyroid deficiency is well monitored. I understand that neurological effects c an be insiduous and damage done before more obvious symptoms show up.so what is my next best step and how urgent is the situation. The original low levels ex isted in spite of taking a multivitamin which gives 5 times the recommended dose of B12

Any observations gratefully received.

[Gambit62 Administrator in reply to paddyfields]

B12 is used by a lot of systems in the body which means that it crosses a lot of specialisms and there is no guarantee that the specialist you see will have much knowledge or interest in B12 - fascinating though it is - its just a vitamin to them and vitamins get very little coverage in the medical syllabus in general.

The best thing to try is for a referral to whatever specialist deals with the symptoms you have - if your symptoms are neurological and that is what is causing you the most problems then try for a referral to a neurologist - though as above, no guarantee that they will know much if anything about B12 deficiency and B12 absorption problems.

If you have stomach issues then you could try for referral to a gastro specialist who may have more awareness of absorption problems at least.

Haematology tends to be used as the default recommendation but I suspect that is because the diagnosis tends to rely on haematological tests - but there are so many sub-specialism and conditions involved in haematology that B12 is again, unlikely to be something they are particularly well versed in though there are some that do have it as an interest.

[paddyfields in reply to Gambit62]

Thank you for confirming the impression I had gained. It is a bit of a cinderella area. Perhaps t he best way forward for me is to make another appointment w ith the GP armed with the essential information printed out that the levels o f B12 whilst on the injections can be expected to be high so to get on record that it is an area to be monitored and discuss the fact that it is not a simple question of blood levels. As I mentioned as I have PD neuro symptoms are naturally attributed to the Parkinsons as were my Polymyalgia symptoms . With PD the dopamine deficiency also affects individuals in a wide variety of ways because it is involved in many systems of the body. So far the "GP" knows next to nothing about my PD, my polymyalgia (now thankfully "better"),the B12 area and they are not so hot on the Thyroid either from what I glean from others posts and my past experience.. I am annoyed when they don't listen and contrarily even more alarmed when they credit me with more understanding than I have. I suppose at the age of 77 studying these things keeps the brain cells workin g if nothing else.

[maxlilly123456]

Hi Thank you all for your replies I am very grateful, you all know a lot about B12 it's nice there are people out there to rely on, I am looking at all the infomation you have given me links too, that will give me more confidence when we go back to the GP'S I will post again with the results from My husbands MMA results

[maxlilly123456]

Hi thank you sleepybunny, I have just read through some of the links they are really good, I will join then phone them