B12 Injections via NHS

[mistygrey]

Hello,

Can anybody tell me if the readings below would suggest I need B12 injections? My symptoms are getting worse:

Headaches

Feeling Faint and Dizzy

Extreme Exhaustion

Weak legs

Persistent Diarrea

My lab work from Mid February is below. I need to go back to my GP to ask for the B12 treatment but fear I won't get it from them as they said my levels are ok and the usual within the ranges rubbish that they constantly feed us.

T4 16 ranges (9-21)

T3 1.5 ranges (0.9-2.4)

TSH 1.3 ranges (0.2-4.5)

B12 212 ranges (180-2000)

Folate 9.1ug/l (ranges 2.8-20)

Ferritin 22ug/l (ranges 15-200)

Iron 9umol/l (ranges 10-28)

Any advice would be much appreciated before my appointment next week with GP.

[AndrewWiseman]

There is no “standard” for individuals... I have had the same problem and many of your symptoms. Everyone tolerable levels are different. They should treat you for low B12 my levels are about 800 and I still feel bad!! However I am self medicating from my next injection. Total cost for everything was about £90 for needles,syringes, wipes and the B12- just waiting on the B12. Although I have some from the GP.

[mistygrey in reply to AndrewWiseman]

Hi Andrew, did you get any injections via the NHS first of all?

I don't think I could manage self injecting myself I am a massive scardey cat! haha..

wow that's bad that you still feel bad at 800, no wonder I feel bad on 217! they have told me to my face that they don't think that is below the range.... I despair with the whole thing now! struggling to hold my job down my symptoms are usually always worse on waking and throughout the morning!

[AndrewWiseman in reply to mistygrey]

Misty,

I’m still very new on this road aswell... in October I was 112- I thought I was going to die!! I was originally sent to a haematologist- which I fast tracked privately (work insurance luckily) who did every test under the sun..... and I have recently (in January been diagnosed with PA) I went to my doctor as I felt really bad again- asked for B12 and was told I needed to get a letter from the consultant, which he did quickly. As I have had the issues I have decided to self medicate. I actually had an injection on Friday from GP- so haven’t actually injected myself just yet!

However you have to weigh up the options.... feel rough or self inject and continue to live as you do?

I will be very nervous the first time but I’m sure I’ll be fine

[mistygrey in reply to AndrewWiseman]

That sounds awful! 112 is a lot lower than my result, mine is 217 but I do feel terrible and a lot of the symptoms do seem B12 related after doing much research.

But my GP is repeatedly saying my levels aren't that bad and within the ranges, which I find terrible as I clearly don't feel well. Does the Consultant know you are doing to Self inject? surely the NHS should be giving you proper treatment?

[AndrewWiseman in reply to mistygrey]

It’s all cost.... the guidelines for GP’s is every 3 months. But I am taking into account taking time off work using my holiday- it’s cheaper to do it yourself in the long run. Can I suggest trying “better you boost” you can get it on Amazon and Holland an Barattes ( Better You Boost Pure Energy Spray - 25ml (Pack of 2) amazon.com/dp/B074N32T2Q?re... it’s expensive but will probably pick you up

[wedgewood in reply to AndrewWiseman]

It WILL be fine . Yes , before the first injection I was scared to DEATH ! Make sure the injection needle is thin . I use gauge 25 and 1inch long, into my thigh ( watch some videos , some are good some not so) Three years on and I don’t turn a hair ! It will change your life .

[AndrewWiseman]

Sorry I didn’t answer your original question I had the first 6 loading injections then 3 months later had another when I was diagnosed with PA then one on Friday just gone - my GP provides B12 percriptions- so I have some to inject when I need it next- and I also have some from a German pharmacy coming.

[taka Administrator]

Hi mistygrey

Your iron levels may also be causing your symptoms as your results seem to show an iron deficiency (and your ferritin is pretty low in range). Did your GP do any other tests too eg full blood count (things like haemoglobin, haematocrit, red and white blood cell counts, MCV) as these may also give hints whether you may also be iron deficient anaemic? Personally I feel rubbish unless my ferritin is over 30ug/l.

Your B12 levels may or may not be causing your symptoms at that level - its not easy to tell due to the overlap in symptoms with low iron levels. Both could be leading to it too!

I'd discuss how to increase your iron levels (probably tablets - why did they not put you on them in Feb?) and your low B12 with your GP. Maybe have a look at the info in the pinned posts especially the BSH guidelines for a B12 deficiencies. pernicious-anaemia-society....

Good luck!

[mistygrey in reply to taka]

Hi

Thanks for your message yes they did do full blood count apparently it was normal but I haven't got that result to see if normal means low in range like it always does with the doctors in UK

I think you are also right I do have an iron deficiency which I am now on 3 iron tablets a day to try and up my levels however I do think my B12 also needs treated too but just not sure to take a supplement myself or fight for injections via the NHS initially until I know what I am doing.

Can you still have PA with a normal blood count? I need to ring the doctors and ask for my results in full so I can compare them but my b12 has decreased everytime I have had the test done!

[taka Administrator in reply to mistygrey]

Yes it is very possible to have pernicious anaemia but to not actually be anaemic at diagnosis. GPs don't necessarily know this unfortunately.

My full blood counts at diagnosis were within normal ranges - the only thing wonky in my full blood count was slightly low neutrophils (I has a stinking cold so not remotely surprising!). My B12 was <125ng/L (My region don't quantify values lower than 125ng/L) but I was not anaemic. I tested positive for anti-intrinsic factor antibodies.

I developed an iron deficiency (though not anaemic then either!) a few months after diagnosis (which leads to a low MCV) so I suspect this may have been developing and consequently somewhat evened out the more common high MCV of a B12 deficiency when I was diagnosed with PA. MCV = mean (a type of average) cell volume which may not help if you have both large and small cells as the mean is normal!

If your B12 levels are on a downward trend then this may indicate an absorption problem (eg PA or coeliacs amongst other things). This may be good to bring up with your GP as it lends weight that injections may be needed.

[mistygrey in reply to taka]

Hi Taka

Thanks for your reply. Do you have any advice for me as I am seeing my Gp tomorrow and going to demand the intrinsic test for PA and also I will ask to try B12 injections.

I can't afford to have time off work as already had time off in previous years for thyroid issues, I just don't want them prolonging my treatment as they always do to save money!

They are definitely on a downward spiral so it would make sense to ask for the tests. Just wether they give me it or not 😪

[taka Administrator in reply to mistygrey]

Maybe have a read of the guidelines I linked to above and take them with you? Parts like the paragraphs headed cobalamin deficiency (bottom of 1st page onwards) may be useful. Some of the info from the pinned posts and from the Pernicious anaemia society website may help too. Maybe print out a copy of one of the symptoms lists and tick any that apply.

Hopefully they'll test for anti-IF antibodies. Things like testing MMA or homocysteine may help to clarify if you are biochemically deficient but are rarely tested and can be complicated by folate deficiencies, hypothyroidism and kidney issues. (MMA and homocysteine are raised as a result of a B12 deficiency).

Have you had any investigations for your diarrhoea? Eg tested for coeliacs or referred to gastroenterology?

[humanbean]

You can have a "normal" full blood count with low iron. Improving your iron will improve how you feel.

cmaj.ca/content/184/11/1247...