Homocysteine mma.. . B12 help please

[Lyndsay80]

Hi I've been getting b12 injections and levels over 2000. Symptoms improved a lot but got worse waiting for next jab.. now symptom are really bad again. I've asked for folate (was 11.4 last Time tested) and ferritin (Dr says was 44 tested last sept) I also asked for MMA and homocysteine as I have before. Dr keeps refusing saying he can't order them a the lab won't allow it? They have to be ordered by a specialist. Is this correct I live in Salford Manchester if that makes a difference. Really struggling now and keep getting neuro sypmtoms (pins and needles not as bad as before), headaches, weakness, fatigue ECT.. . Any advice would be appreciated greatly. Drs are a nightmare! 😝😩

[Gambit62 Administrator]

MMA and homocysteine are more complex tests and generally need to be done at the hospital where the testing is being done.

How often do you have maintenance doses - given your symptoms then you could be on 2 monthly maintenance per current guidelines in the UK though even this isn't enough for for a lot of patients? would your GP consider trialling more ffrequently?

You may want to point your GP at the BCSH guidelines if you are on 3 monthly maintenance

onlinelibrary.wiley.com/doi...

they can access them through the BNF

you may also want to suggest that they take a look at the area of the PAS website specifically targeted at helping medical professionals improve the quality of diagnosis and treatment of patients with PA/B12 absorption problems

pernicious-anaemia-society....

[Lyndsay80 in reply to Gambit62]

Thanks for your response Gambit62 my levels were at 239 originally.. My Drs gave me loading does then stopped treatment and got annoyed when I mentioned even the nhs uk guidelines.. which say with Neuro symptoms keep injecting until symptoms stop improving them move to 2 monthly injections. They sent me a letter asking to leave so I went couple months with nothing after initial 2 week loading doses and some improvement in symptoms. My new GP didn't give me loading doses. I was allowed 1 injection every 2 days which only covered me for a week as he only gave me 3. Now I just have to go in randomly when I still feel ill, which is sometimes twice a month or more. He makes me get up and go to surgery between 7am-7.30am for these injections.. which I struggle to do with fatigue, so it can take a whole week of trying to get up to get there before I manage to get up in time. Then he gave me an injection and took my blood straight after in the same arm and said results came back over 2000. I keep repeating b12 serum doesn't tell you how much is active and how much is inactive. He just fobs me off. I tried to go back to the gym and got breathlessness again doing cardio and feel generally weak particularly in my legs. Already had ECG and circulation test for pins and needles and both came back fine. He keeps saying im.not anemic. So I started going with no makeup or tan on so he can see how pale I really am and also been really tired and puffy eyes.. bruising easily again with mild pins and needles in my arms only (used to be a lot worse and in legs as well) and im finding it hard to get through a full day at work and retain info I'd normally find easy to remember and general brain fog. This is why wanted folate and ferritin retesting and MMA and Homocysteine. Should I request a referral for those?

[Gambit62 Administrator in reply to Lyndsay80]

Lyndsay - have you tried writing to GP - would suggest the GP and the practice manager and if that doesn't do anything would suggest that you contact your local PALS.

Being asked to leave just because you pointed out that the surgery wasn't applying national guidelines seems a bit ridiculous -

Other things to explore are

a) if your GP would agree to nurse showing you how to inject and allowing you to inject yourself as you needed,

b) joining and contacting the PAS as they may be able to contact the GP on your behalf.

pernicious-anaemia-society....

pernicious-anaemia-society....

[Lyndsay80 in reply to Gambit62]

Yes I contacted PALS but didn't carry through with it as wasn't feeling well enough at the time and I was more interested in moving forward to get a result and well again. Thank you I will look into PAS.

[greenbexy]

On my own experience, I was referred to an haematologist who did the MMA test. I could tell from what she was saying to me that she had no clue of B12 deficiency, although she do the test (much too close to my maintenance dose for a true picture!) As she didn't believe that my pins and needles, memory loss and 'dead legs' when waking was anything to do with B12 deficiency (she hadn't done any research, unlike me!) she thought a referral to a neurologist would be appropriate.

If your doctor hasn't found out why you have pins and needles he should, at the very least refer you to a neurologist! Maybe this is the route to go down to increase the injections. If it's any help I have an appointment at Salford Royal on the 14th, I could PM you and let you know if they are more understanding of B12 deficiency? If you haven't already gone down that route, did you have an EEG or an ECG?

[Lyndsay80 in reply to greenbexy]

Yes greenbexy pls let me know how you get on that would be very helpful. I went to a heamotoligist too and he had no clue but said to continue with b12 if it helped. He carried out no tests whatso ever and at that time I didn't know as much as I do now.

[greenbexy in reply to Lyndsay80]

OK, will do. At least your haematologist didn't tell you that the injections contain cyanide and it builds up in the body! She knew I was on hydroxocobalamin too! Frighteningly frustrated at the lack of knowledge!

[Lyndsay80 in reply to greenbexy]

Well no thankfully he didn't say that... but he did say he didn't believe I was deficient but couldnt see why I coulndt have jabs if I thought they helped me. I read someone else said you should stay on treatment and if still symptomatic the MMA and homocysteine it would still show up?

[greenbexy]

Just to add, you must refrain from B12 for around 3-6 months for the tests, which if you need them more than monthly, could be detrimental to your health!

[wedgewood]

You can otder a home homocysteine test from laboratories like Medichecks etc , but it is expensive -over £100.00 I believe .

[Lyndsay80 in reply to wedgewood]

Yes I know.. but I just paid for a specialist Dr for my son. Hasn't really helped. So don't want to throw money away. I've suffered for many yrs and been misdiagnosed with incurable illnesses in the past. The money these Drs waste is unreal.. i dont understand why Drs get so annoyed when you actually start getting better and down the right track, but refuse to help you.

[wedgewood]

Sorry I think it’s York test And costs £149.00

[Nallie17]

I’m getting mine tested with a neurologist so I think ask to be referred

[Lyndsay80 in reply to Nallie17]

Does the neurologist seem to know more about it? I've also been told at referrals, that the GP has written a bunch of lies in the referral. Already off to a bad start before you even get seen.

[Nallie17 in reply to Lyndsay80]

Neurologist know more about it because they see the people who have had b12 deficiencies and subsequently develop neurological symptoms. In my personal story my GP wasn’t very knowledgeable but referred me after my blood tests came back within range but my symptoms were getting worse, I was referred to a neurologist who did my blood tests again and decided to do a homocysteine the second time as the first time my blood tests were normal, I think be persistent and don’t give up keep going back to your gp and ask them to refer you

[Lyndsay80 in reply to Nallie17]

Thanks for your advice Nallie17 . I wont give up. Im so close to being well now, after suffering most of my life. The support and info I have received on here the past year has been invaluble to me and my quality of life and im so greatful I happened upon the site. If anything, it's made me even more determined to get my life back. What you have said about neuro's, makes a lot of sense. I'll try get a referral. Thanks again.

[clare2017]

I had been diagnosed with pa I have never had my ma or homocysteine tested! My experience is Drs don't know or even care! I was diagnosed in UK but since returning to UK my Dr here has completely stopped my injections he said my levels are fine incfolate and certain and that my b12 was 899 ! That was 4.5 months ago! He told me there is nothing to suggest that I am pa if my vit b12is so high! I asked to be sent for blood work he said no need as previous ones were ok ! He suggested my symptoms were in my head and told me to practise mindfulness and to get fit , do outdoor activities! He prescribed some anti depressants , I told him I wasn't clinically depressed like that! He then suggested that I should perhaps be booked in for a psyche examination! I refusedhema aged to convince some members of my family I was mentally ill. However I managed to conv9nce my mum and sister's that I wasn't and gave them info on pa.

So now they are supportive! Though mum never believed I was imagining symptoms! I have since moved county. But I still can't get a Dr willing to either test me again for bit b12 and India is factor etc or willing to accept my diagnosis in UK! I only havealetterfrom my Dr giving full dates of when I was diagnosed first they said I was menopausal, then it was depression But I kept telling them I wasn't! Then eventually a ,locum Dr saw me and suggested I get tested for bit b12 diffency and pa! That came back positive, I have The peristaltic anti bodies ! She gave me loads g dose asap that day Andorra two week period! Then again every 2 Mon the! She leftpracticeand my owner who was back suggested I should have every 3 to 4 onthsusua,my ended up being 14 weeks! I did fight for more frequent but he wouldn't budge!

I then left that practise on account of work as relocated but found that the practice according to postcode was very full and I struggled to get an apt! When I did theyhadnever heard of pa! Went 6 months there had one injection and suffered , I took the tablets as the liquid undertoungue makes me gag! I got very ill And subsequently lost my job Adidas either to weak to do my shifts and struggled or I had to cancel shifts! And because it was agencythey didn't want to know me ificouldnt do long 12 he shifts , tried doing nights as it was a bit quieter, but I wasn't sleeping well!

In a,it of pain, and brain fog etc constant pins and needles in my leg and recently my stomach has been reacting to certain foods! The latter symptoms only starting! But eventually my last gp in UK that was a yr ago agreed to resume the injections But only ashehad to shut me up! I was appalled but shocked! My bq2 at that point was 120 I had to buy the files myself I had to pay 20 pounds for them as according to chemist they didn't come under persciptioncharges! I had no choice to pay this as I needed the injections! I did have an me I and I know I have lesions on myspinal cord, They then told me I had ms and not pa, but thenueroligist told me after more tests I didn't have ms (which does run in my family)that he wanted my injections to be in teased to monthly as lesions weremaybe caused by pa, but Dr refused to give me injections every month saying I would poison myself myself with vitb12 .

Subsequently he went back to previous Drs of giving me every 14to 16 wks! I again became weak and lostmy2nd job!

I got so I'll and was still recovering from shock of being told I had ms and then didn't (I was relieved of course)but the shock was a lot and I had a small breakdown, I came home to Ireland with my files for a rest family Dr who knew me as achildteenager growing up, agreed to give me injection but three months later refused! I have since been fighting and my new Dr now as I moved county! Is to refusing to g9ve me injections! I wanted to self injecting been told that if I importonline the injections herein Ireland that I need to provide a persciption for the drugs to customs In Dublin as it's an over the counter controlled drug! I can't get any Dr here to recognise or retest me for pa! I have applied to UK for my medical notes which visit me 65 euro but still waiting for them it can take 12 weeks has already been 4weeks!

Was hoping I showed pharmacist here my diagnosis hemaya bypass my Dr! I have been really struggling last few months! Have been taking tablets and for ing myself to take the liquid form from Holland and Barrett!some days I can take let some i can't! Can anyone he,p or advise me please!how do I get Dr to convince him and or make him realise this is an illness that I need injections! I'm currently following a gluten free and wheat free diet in attempt to appease my stomach and maybehelp my pa symptoms aswheni go to Dr now, hetellsmetoo i imagining it! Other day he told me I was a hypochondriac!

Please help! Some one! Thanks!

[greenbexy in reply to clare2017]

Hi clare2017 maybe if you write your own post (at the top of the page) you will get more responses. Your post could get the lost in the thread.

[clare2017 in reply to greenbexy]

Ok sorry

[greenbexy in reply to clare2017]

No need to be sorry, just want you to get the support and advice you might need. It might get missed tagged on the end of a post a couple of days old😀

[Wowo23]

Lyndsay80. I'm shocked how some patients are treated with b12 and PA. My b12 was 93 and IF thru the roof. I was given daily shots for a week and now weekly shots for life. I also take folate, daily b12 sublinuals and ferrate(iron) My primary wanted to spread shots out more once my b12 was a stable level, but my oncologist said No Way! Said the only reason the levels are stable is because of the shots I get and frequency. My levels stay around 600 now. I am shocked when I hear about sufferers having to wait so long in between shots. Does this depend of what Country your from or the lack of knowledge docs have of PA?

[Lyndsay80 in reply to Wowo23]

I think it's a bit of both. I've heard of people from otjer parts of the UK say they get better treatment than others... Tempted to move lol. But mostly due to either lack of knowledge or Drs having set protocol to follow regardless of the patients symptoms and tests. Pretty sad really but unless you keep mithering you get no where. My Dr hates the sight of me... I don't care. It's my health. I'm glad you got the treatment you needed to get better. Just shows there's hope for us all!