Advice needed regarding doctors treatment of low b12 and low folate, please.

[Paulinemac]

Hi, my niece in law has been diagnosed with b12 level of 89, range 200-900, and low folate 3, <3.5 and low ferritin, 20 , range 24 -240.

She was first told over the phone that her levels were low and she had to start away on Vit b12 injections, 6 over 2 weeks. She was told what her folate and ferritin levels were just that they were low and they would test them all again after 8 weeks and then decide whether to treat the folate and ferritin.

I myself receive Vit b12 injections and through this forum have gained a lot of knowledge about b12 deficiency and know the importance of folate and ferritin.

She has some neurological symptoms so I told her she shouldn't wait and go back and find out what her levels were and discuss starting treatment sooner . I went along with her and the doctor agreed to start on iron and initially said her folate was fine and to wait and see what her b12 level was when tested again before deciding on giving folate.

He had printed off her results and gave them to her without saying the figure, so I had a look only to see that it was only 3 and the lab had written " folate deficient, treatment required". I pointed this out but doc refused saying that you can't start folate tillb12 deficiency has been treated and levels were normal due to concerns regarding spinal cord. He has now brought forward her repeat tests and she is having them done tomorrow.

I know through this forum and myself that b12 needs folate and folate needs b12 so I am wondering if the b12 would have been off any use to her with her folate and ferritin being so low? (She has felt no improvement after her injections)

Could /should she have started taking folate once she had had her injections? And only after another blood test ?

I think she should have been started on folate sooner but would very much appreciate hearing what the experts on here think?

Thank you.

[fbirder]

Well, I suppose it’s good that he knows that folate treatment shouldn’t be started until B12 status has been determined. But he knows her B12 status - highly deficient. So he should have started treatment immediately with both B12 and folate.

[Ryaan]

She doesn’t need another blood test to confirm what is already confirmed, unless Gp thinks they might have got something wrong in the test.

He should have started B12 and Folate (most likely 5mg). As you know Folate is very important for B12 to work properly.

That’s what my Gp gave me. When my Folate was low I had feeling of breathlessness/shortness of breath at rest. The same happens with low Iron and he needs to look in to why it’s low. If there’s an absorbtion problem he should treat, most likely with Ferrous Fumarate 210mg once daily. All 3 are important.

I’m no expert, just going by 2 years of personal experience and I’ve learnt a lot regarding this on this site.

[Foggyme Administrator]

Hi Paulinemac. Your GP is partially right about one thing. There have been very rare reported cases of subacute degeneration of the spinal cord due to folate deficiency being treated before the commencement of B12 therapy. However, it's only necessary to wait 24-48 hours after the commencement of B12 therapy before folate deficiency is addressed.

Testing serum B12 levels is not required following commencement of B12 injections (unless checking for low levels) - all the guidelines state this. GP may assume that once B12 levels are within the 'normal' range, then injection frequency can be reduced - some even stop B12 injections. This is wrong. Once injections have started serum B12 levels can no longer be used as a marker of deficiency. Not can they be used as a guide to the efficacy of treatment. GP should assess clinical picture - the symptoms - and treat those, not serum B12 levels.

Here's some information about serum B12 levels and problems with testing:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

Waiting eight weeks to re-test ferritin and folate levels before giving treatment is a nonsense!

Your niece-in-laws B12 are very low - she has a serious B12 deficIency, with neurolgical symptoms. Hope your GP is aware of the intensive B12 treatment regime for those with neurolgical symptoms - many aren't. Following the six loading doses, she should be prescribed B12 injections every other day until no further improvement - sometimes for many months (up to two years). Details about this can be found in the BNF (prescribing guidelines for doctors), which her GP will have on his desk. Details about the intensive treatment regime are about the third paragraph down - many GPs do not read that far so you may have to,point them out.

Here's a link to the BNF:

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Note: the BNF refers to the treatment of pernicious anaemia. Her GP may say...'but she doesn't have pernicious anaemia. This is a moot point. The treatment for pernicious anaemia is treatment for the B12 deficIency it causes. Ergo, the treatment for B12 deficIency (from whatever cause, and there are many) is the same: B12 injections.

It's really important that sufficient treatment is given in the early stages, especially where neurolgical symptoms are present. Undertreating B12 deficIency can result in irreversible neurolgical damage (not suggesting she has this) so it's important that she has the intensive regime of injections - until she feels that her symptoms are relieved and under control. If symtpoms return before the next injection and are then relieved when she has the next injections, this is a sure sign of under treatment. The aim is to have injections frequently enough to stop the symptoms of deficiency returning.

Here's some information about that:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms).

Finally, her current symptoms will be due to a complicated mix of iron deficiency anaemia, folate deficiency and B12 deficiency. Recovery for some people does take some time and neurolgical symptoms usually take longer than other symptoms, to resolve. As each deficiency is addressed, she should start to notice improvements, over time. The most important things are that a) all deficiencies are treated and that b) she gets sufficient B12 for proper repair to take place.

Also worth asking her GP to check vitamin D levels - these are often low in those with absorption problems and low or deficient vitamin D can make you feel very ill.

Also - hope your GP is going to,investigate her low levels of everything - speaks to absorption problems and there can be many causes. Here's a link to the guidelines for the diagnosis and treatment of cobalamin and folate disorders - what her GP should be following to diagnose and treat B12 and folate deficiencies.

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and Folate Disorders)

Good luck with her GP today. Be interested to hear how if goes and please post again if you need more help.

👍

[Paulinemac]

Hi, Thanks guys, you have all confirmed what I thought.

I asked for her Vit d to be checked and he is also doing test for celiac . She has had test for IF which came back negative but as we know that isn't always correct, however he thinks her b12 deficiency is most likely autoimmune as at the start of the year she was diagnosed with under active thyroid.

At one point in the appointment when I questioned him about not giving the folate , he replied " I am the Doctor " and he was doing it this way.!!!

So we are going to see the doctor who I see who agreed to give me my injections every 10 weeks as I couldn't last12 weeks. Only thing is we have to wait till we get the results, 7 -10 days.

Unfortunately I have learnt over the years not to accept what doctors say and to question their decisions, which most don't like. Plus they don't like if you have done your homework either. I cared for my mother in law with copd and my nana and with both had problems with doctors not taking my concerns seriously enough, so much so a nurse even gave us a form to put in an official complaint with regards to treatment of my nana. Sadly they have both passed away now .

I just wish the doctor who I saw when I got diagnosed was still in the practice, I asked for my b12 to be checked as I wanted to be sure my symptoms weren't all down to "my age " (52) the menopause. My results were just in range at 237 so she gave me tablets for 3 months then retested and they were 257. I went in to the appointment armed with information expecting I might not get them only for her to say I needed to get injections. I was stunned couldn't believe how easy it was after everything I had read about on here. Unfortunately she has now moved away 😔 Since then one doctor told me the numbness in my toes, was in my head and I was probably wearing the wrong shoes !!!! Needless to say don't see her anymore.

So glad I found this forum as I have used the information on here for myself and it has helped, unfortunately some of the overlapping symptoms are due to my age which I am getting help with from a herbalist, staying clear of doctors.😄 It feels good taking control of your own health and not putting all your trust to doctors.

Thanks again for your replies, very very much appreciated .

[judburke in reply to Paulinemac]

That’s great that she is being tested for Coeliac. In my view finding out why the levels are low is key to improving her health. It’s not enough to take supplements and not investigate the root cause. I was undiagnosed Coeliac for years as Drs didn’t investigate why levels were low and before taking advise on here I didn’t think to ask why. I recommend that you look at Coeliac UK website and speak to them if you have any questions about diagnosis and more details about a wide range of symptoms. I have always found them very helpful and they are very keen to get people aware and tested.

I can’t help with folate but to help improve ferritin she should take the iron with Vit C as it improves absorption and makes it more gentle on the gut. Also iron needs to be taken a couple of hours away from Thyroid meds. If you do a search on here I think it’s 2 or maybe 3 hrs.

[KimberinUS]

hi there,

with low b12 and iron i am going to suggest she be tested for h pylori.

i had h pylori without ANY heartburn, the main symptom.

best of luck