So I was diagnosed with low b12 last October (reading of 170) and given 6 loading doses which knocked me for six. I then went back after 3 months and had a reading of 410. 3 months later another blood test and feeling worse I had a reading of 305. When I went to discuss results with my GP, he said I wasn't deficient even though I explained I was having the same symptoms as before but then I didn't know what it was.
Out of pure frustration I began to cry as felt like he wasn't listening, so which he said "I think you're depressed" because I was weepy! And suggested a course of serotonin enhancers...antidepressants.
I know I'm not depressed (which apparantly my GP says is what a depressed person says) so I really don't want to start taking these steraline tablets.
Please can someone help me with some advice. At 305 reading, is that low as there's a lot of conflicting info on the net. Should I think about self injecting?
I'm just so fed up of being tired, muscles aching, making mistakes at work, feeling detached from my kids etc etc and feeling like a hypochondriac with my doctors.
Any advice would be most grateful.
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VMITCHELL78
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I was the same my levels were dangerously low 28.. after loading dosing felt even worse doctor said the same cause I starting crying said im depressed No I'm not depressed .. wouldn't take antidepressants I'm now in to 5 months since diagnosed I have nerve damage in feet threw it... I'm am only starting to feel slightly better in last few days although I'm still very tired I hope you feel better soon x
Sorry to hear you're having the same issue, it's so frustrating and i don't know about you but you feel like all you think about is B12, but without talking about it!
I hope you get some positive results soon and hopefully 5he nerve damage will repair.
I'm so glad i found this site, it's so supportive and now I don't feel like I'm alone x
Testing of serum B12 levels after treatment has commenced is not necessary. (See bottom of page 5) where the 2 months interval of injections for those with neurological symptoms is also reiterated.
It is also important that your Folate level is monitored as this is essential to process the B12.
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.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Your doctor should be treating your symptoms not just looking at the computer screen.
Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
It's very interesting what you say about iron levels as the doctor did say I had high levels of iron....
Also I can totally relate to the badly tuned radio!
I'm so disillusioned with my GP, I just feel so fobbed off all the time.
I've actually just found a local beauty salon that has a harley St specialist visit once a month who administers b12 injections so think I'm going to do it that way. 20 quid to feel better is well worth it!
I hope that if you go down the route of having a £20 injection that it helps. I fear you will need a much longer course of injecting as it really does take time to feel better. Keep us updated as to what you do and how quickly you resume a normal life!
Hi joint pain. After reading through the links, I just can't understand what my surgery was thinking. When I got to 170 last year I went to the Dr as thought I was having a stroke, I couldnt even wash my hair my arms were so fatigued.
Anyway, I had the shot and oh my life, I can't begin to tell you how much better I already feel. I've been buzzing round the garden, my husband said it's like I have a new batteries!! And I didn't realise how long I'd gone without doing a hard poo...sorry but it's those things that when so low you don't even notice.
The lady who did the injection when I told her my story said I wouldn't believe how many people she sees with the same issues with the nhs!
Well, luckily I'm able to afford £20 a shot, I'm seeing her again this week and the following and she said I should be able to then go every 2 months...I am considering SI, but will have to pluck the courage up on doing that as I'm a bit squeamish!
Hello, your scenario sounds very similar to mine. I have been fighting my GP for over 2 years now, I put in a complaint against the doctor who brushed me off as being depressed and since then all the doctors have closed ranks and will not listen. I was given a loading dose (B12 was 170) and then nothing since as blood tests don't show a deficiency.
I would advise you to go back to the GP with someone to support you and if you don't get anywhere write to the practice with the guidelines.
I wish you well, it's really awful haven't to fight for your health when you feel so poorly
I'm so sorry to hear you're going through the same issues I'm experiencing.
Keep fighting for your health...It seems the nhs aren't interested and it's cheaper to diagnose someone with depression than a b12 deficiency.
I've just found a local beauty salon who has a monthly visit from a harley St clinician who administers b12 injections for £20 so I'm going to go down that route and sort myself out!
This forum is great as makes you feel heard, not along and going completely bonkers!
Hi V. I also thought my b12 was low last autumn and started b12 tablets for a month. Then was tested in December and was 178 carried on for another month with sublingual b12, and was tested at 452 in January. Still had most of the symptoms except my brain was working really well. I upped the sublinguals to a few a day. With little improvement. April I started self injecting every other day and the difference is astounding. I still have some permanent damage to my nerves which go to my legs but it is the best I have felt for twenty years. It sounds weird but I can now eat gluten, milk and cheese and meat without bloating or lBS symptoms now. If I stop for even an extra day some symptoms come back until i resume self injecting every other day for a while. BTW ordered 100x1 ml cobalamin on Monday from versandapo they arrived yesterday (Wednesday) 48 hours from Germany to North Wales!! I paid by Paypal.
Yes, it’s a worry indeed as to what will happen to our supplies of B12 ampoules if we leave the EU . I’m also a Remainer ,and not only because of B12 ampoules . I feel I can say that here as I’m anonymous. Would not say it in public for fear of attack ! ( I’ve had some horrible things said to me )
Sorry to hear you still have nerve damage and that it's taken you 20 years to feel yourself again.
I feel lucky to have found you all on this forum and whoever started this deserves a medal. Don't know about you, but just having this as support makes you feel better x
I've just located a local beauty salon who has a harley St specialist visit one a month who administers b12 injections for £ 20 so think I'm going to give them a try.
But I would be interested in SI. Did you find it difficult to start? As in what to buy and actually do it? I'm happy to do it myself (just to feel myself again and actually enjoy my children will be totally worth it, plus the salon is a fair trek from me!) How did you actually get started?
£20!!!! You can buy 100 ampoules for £45 from versandapo.de or you could buy around ten ampoules on eBay for £20 just to start you off if you get 1ml ampoules and the buy 2ml syringes with 25G x 16 mm needles from a chemist you will be set for a while.
Hi jointpain, is this capsules or injections you're ordering? I've just visited the site myself. I'm due to have my first injection next week, but wondering whether it'd be cheaper to do it myself as my family GP is useless, so I've had to pay to see a private GP and it's going to cost a lot!
The ampoule is a small glass bottle that you break the top off, the weak spot where you break is marked with a white spot. Then draw up into the syringe, I use the needle I will be injecting with, but it is possible to blunt it on the inside of the ampoule, though if you are careful it won't happen, then point vertical, push out the air and inject into muscle. I go outer thigh left, right, belly,upper arm left, right. In turn.
Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance issues plus others?
Recommended UK B12 treatment for B12 deficiency without neuro symptoms...
6 B12 loading jabs over 2 weeks followed by a jab every 3 months
Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
Some UK forum members seem to struggle to get recommended B12 treatment if they have neuro symptoms. See BNF, NICE CKS, BSH linsk for more info on UK B12 treatment.
Sadly some UK doctors' understanding of B12 deficiency is not as well developed as it could be so in my opinion, it pays to do some B12 homework.
Help for GPs
1) PAS website has section for health professionals which your GP may be interested in. Health professionals can join PAS for free as associate members.
2) PAS library on website has leaflet "An Update for Medical Professionals: Diagnosis and Treatment ", access for PAS members only. Some forum members have passed this to their GPs.
3) I gave my GPs a copy of Martyn Hooper's book, "What You Need to Know About Pernicious Anaemia and B12 Deficiency"
If you think PA (Pernicious Anaemia ) is a possibility, I suggest it's worth joining and talking to PAS (Pernicious Anaemia Society). See blog post below about how PAS can support people seeking a diagnosis (from Martyn Hooper's PA blog).
"diagnosed with low b12 last October (reading of 170)"
Were you given a test for PA last October? This would be an Intrinsic Factor Antibody test in UK. IFA test is not always reliable. Still possible to have PA even if IFA test result is negative or normal range.
Did GP consider ordering MMA, Homocysteine and Active B12 (holotranscobalamin) tests? the results of these three tests may be affected by recent B12 supplementation.
What did GP say was causing your B12 deficiency?
Do you eat a diet with plenty of b12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with b12? Vegan and vegetarian diets can be a risk factor for low b12.
If yes to b12 rich diet then diet as a cause of low B12 becomes less likely and possibility of an absorption problem in gut increases.
BSH flowchart from BSH Cobalamin and Folate Guidelines outlines when PA and Antibody Negative PA can be diagnosed in UK.
It's possible that your GP may be unaware of the BSH Cobalamin and Folate Guidelines which were published in 2014. They may be following outdated local NHS guidelines on b12 deficiency. I made sure my GPs knew about BSH Cobalamin and Folate Guidelines.
Would recommend reading books I listed. If finance is an issue, most UK library services are likely to have a copy of at least one of these books, which can be reserved.
NICE guidelines on Coeliac disease (link in my post above) says that patients with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done. Total IgA test shows which patients have IgA deficiency. People with IgA deficiency (an immunoglobulin) cannot make the antibodies that tTG IgA test checks for and need to have different tests for Coeliac disease.
If you've been tested for Coeliac disease, did you have both tests above?
Correct treatment is worth fighting for and if all else fails some forum members choose to self treat.
"given 6 loading doses "
Do you know why you were only given 6 loading doses and no maintenance doses?
It suggests to me that your GP might have thought your low b12 was due to a temporary cause. Two temporary causes that I am aware of, are pregnancy and a temporary diet change.
"went back after 3 months and had a reading of 410"
"3 months later .....had a reading of 305"
My understanding of UK B12 guidelines ( I am not medically trained) is that if you had neuro symptoms in October when first diagnosed, you should be on neurological B12 treatment regime, whatever the cause of low b12 (even diet). See BSH guidelines for more info.
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
Most UK GPs will have a copy of BNF (Britsh National Formulary), a slim book on their desk.
Info on UK B12 treatment including for those with neuro symptoms is in BNF Chapter 9 Section 1.2 BNF tends to refer more to PA and other macrocytic anaemias. If you do not have PA diagnosis, may be worth referring GP to BSH Cobalamin and Folate Guidelines.
Link about Letters to GPs about Under treatment of B12 deficiency WITH neuro symptoms
To always get copies of all my blood test results. In relation to B12, I look particularly at b12, folate, ferritin and other iron tests and Full Blood Count.
Some UK GP surgeries have online access to a summary of results/records. This is just a summary and may not have all the info wanted. Might be worth asking for access to paper files. Some forum members get a complete set of NHS medical records, maximum cost in UK - £50. Maximum cost copies of test results in UK - £10.
There are some health conditions that can lead to a build up of iron in the tissues of the body. If GP said your iron levels are high, I hope they have excluded this possibility.
I've just paid £20 for a b12 shot...she suggested I have one a week for 3 weeks then one every 2 months...The costs soon add up so I'm taking your advice. .especially the "don't be such a chicken"!!!
Thank you all the advice, I've a friend who's mum is a district nurse so can show me how to inject...I'm hoping once I've got the first one out of the way it'll be ok!!
I do find it sad that we are having to resort to researching and resourcing this ourselves to feel better and wonder how many others are suffering without even knowing....
Thank you again...I'll let you know how I get on after plucking up the courage!!!
I wonder why they are so keen to give anti depressants to everyone rather than B12. I would have thought they were dearer. I suppose it’s the nurse hours for the injection. I had a terrible auto immune reaction to sertraline two years ago. Full body skin lichen planus which lasted a year.
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Follow up re my first post a couple of days ago to introduce myself .I had my 1st visit to Dr yesterday to broach subject of B12 deficiency.
GP still not getting it!
Update of visit to the GP
