I would be really grateful for some help regarding a self diagnosis of vitamin B12 deficiency.

[Beachcomber]

Hello, I have read through lots of the threads on here on B12 deficiency and they have been really helpful. That plus lots of consulting doctor google makes me think that this is what is wrong with me. I have managed to persuade my doctor to do a blood test and should get the results tomorrow.

Because my doctor is not being terribly helpful and I don't think will consider me to be deficient if my level is borderline/within normal limits, I am looking for a bit of advice on good old MN...

So, here is my situation. Up until recently I have been in good health, then I had an infection and had to take 3 rounds of antibiotics and I have been ill ever since (September). My theory is that I was low in B12 and the infection/antibiotics pushed me off the edge.

Symptoms; brain fog, terrible memory, forget why I have gone into a room, exhaustion, all day lightheadedness which can turn into dizzy spells in the evening (have to lie down), anxiety, slight breathlessness, low blood pressure, highish resting heart rate (90), palpitations, feeling of heart being compressed/chest pain. I have had sore muscles and tingling in arms and legs but don't have those right now. I sometimes have a weird itching under the skin on my arms and legs after a shower (no rash or redness). I am struggling to function normally and have had to take time off work.

I'm 41 do not have signs of perimenopause, have regular periods, am normally healthy, not on any medication and don't take hormonal contraceptives. I was found to have folic acid deficiency about 10 years ago and had prematurely grey hair in my 20s. I used to take a supplement for it (especially when pregnant and breastfeeding but haven't taken it in years). I have been a problem drinker in the past but am not anymore.

Now, the medical side. Have done various tests with the doctor and ended up in A and E twice due to chest pain and fainting. Have had heart exams done by cardiologist and everything is fine apart from slightly high resting heart rate (am normally lower). Had blood tests done and everything within normal range apart from;

Red blood cell count: 3.72 (normal range: 3.8 - 5.8)
MCV: 104 (normal range 80 - 100)

Hemoglobin is fine at 12.8 (normal range 11.5 to 16) and thyroid tested for TSH and is 1.4.

I am very keen to see what my B12 level will be but fear that doctor will not treat if it is low end of normal. In the meantime I have taken things into my own hands as I cannot stand the dizzyness/fog any more and am taking sublingual B12 liquid twice a day (since yesterday) at 1000 mcg. I'm also taking Floradix, vitamin D3+calcium, probiotics, vitamin C and a general magnisum+B vitamin tablet.

Thank you for reading and I would be immensely grateful for any advice, experiences, words of wisdom, etc.

Find out what your level is, together with the reference range. If it's under 500 you will need to supplement. If it's on the floor, your GP may do the decent thing and offer injections. If it's not, you'll probably be told you're OK, but it might then be worth carrying on with the sub lingual.

Your Hg is actually low in range. Have you had your ferritin tested? If not, I think you should. Some of your symptoms are notoriously non-specific and could be caused by ferritin deficiency.

If you've had issues with folate in the past, that should be checked again as well.

Hi

I have all of these symptoms too. I had bloods done yesterday for b12, ferritin and folate.

This time last year i was deficient in folate and ferritin. B12 was 204 so just borderline normal and at first my gp refused to give me an supplements for it. Because she said it was 'normal'. I did my own research and spoke to her about optimal levels and how even though I was 'normal' I was symptomatic. She still said no to injections but agreed to try me on supplements which did help. Within 4 weeks my level of b12 was up to 400. The folate and the ferritin were also up. I felt a lot better and stopped taking the supplements.

The last time I had a re-test they had all dropped again but were still 'normal' albeit borderline and was told I did not need treatment.

So anyway I pushed for the tests to be done again so waiting to see the results. In currently lying on the couch as I feel dizzy. I've had to take the last 3 days off on holiday from my work as although I don't feel ill, this dizziness and tiredness is causing me to not feel good.

I ended up in a&e tue night. Had heart tests, blood pressure tests etc. all normal. I also have high testing heart rate right enough.

They also did loads of bloods, liver, kidneys, infection markets, heart bloods as well as the usual iron and CBC. All normal. They also performed neuro exams and shine lights in my eyes etc. All normal.

In so fed up too. Let us know your levels when you get them and I will keep you posted on mine next week!xx

Hi RockinD, thanks for your reply. I have just checked the lab to see if my results are in and they are - my B12 is low!

Vitamin B12: 118 (lab normal range 141 - 489)

That's pretty low isn't it?

Phew, this will now give me ammunition to get other things tested. I haven't had ferritin tested but would like to and will now probably be able to persuade my doctor to do it plus folate. I didn't realize that my Hg is actually quite low so thanks for that.

I think he might prescribe injections as when I persuaded him to prescribe the blood test he agreed that injections are the way to go if there is a deficiency. I'm not in the UK and the health system is pretty generous where I live. Looks like I need to get other things checked out and possibly treat a whole manner of things. I think I'm sort of glad if this is what is going on as I have spent the last 4 months thinking that I was terribly ill and had a heart problem/was never going to get better. My doctor thought it was "stress" due to having had a severe allergic reaction to the first round of antibiotics I had.

Do you have any experience with the injections? I hear they hurt!

Also I won't be able to see the doctor to discuss my results/hopefully start treatment until next week. I am feeling bloody awful so do you think it is OK for me to keep on self-medicating with the sublingual until I see the doctor? (I bought it in a chemist and it is a solution that is intended for oral use in vegans or for injection in people with pernicious anemia.)

One last question if you don't mind! I have only been taking the sublingual since yesterday but I think I do feel ever so slightly better. I feel slightly less like I'm going to faint at any minute, BUT my muscles have been sore and the tingling in my arms and legs is back. I know with some things like this you can sometimes feel worse/different before you feel better and you can have old symptoms come back as you drop some of the 'worst' symptoms. Is it possible for the sublingual to have had a slight affect already and would this changing of symptoms be par for the course?

Thank you!

X posts with you Le1890. I'm sorry to hear that you are feeling bad too. It is so horrible and frightening. I'm glad to hear that lots of your tests came back normal. It's always good of course to have normal results but it doesn't get you further forward apart from ruling some things out. And of course, it seems that 'normal' can be very far off optimum.

I hope your latest tests show something and your doctor gives you the injections if you need them. Good luck and let us know what your results are, we can compare!

That range is very low too. I have the injections every 3 months Life changing. The longer you leave it some of teh symptoms don't resolve esp neurological ones I have a permanently numb toe now as it took so long to get diagnosed

My B 12 was low in range, but fixable with sublinguals, so I have no practical experience of injections, but you are below range, so action is needed, but the sublinguals should be fine until you see the doc and if he won't play ball.

I would expect you to feel better slowly, rather than quickly, but I am guessing you have other deficiencies and it might not be clear which deficiency is causing which symptoms.

I had low B12, low folate, very low ferritin and hardly any vitamin D and I was so ill the NHS diagnosed me with CFS. I'm fine now.

Hi noddyholder, I'm really sorry to hear about your toe. I have had occasional episodes of numbness in a toe and I have also had joint pain which I now see can be part of all this.

I thought the lab range was really low too when I saw it. I thought under 200 was considered low and 500 considered normal/healthy.

Am lying in bed feeling crap and hoping that things can be sorted soon. I spoke to the doctor earlier and made an appointment for Monday morning. He said that my level was 'a bit low' and that we needed to talk about it and that it was complicated. I'm not too sure what he means by that but I hope he isn't going to fob me off.

On the bright side I'm glad that this is hopefully an explanation to various symptoms that have been building up over the years since my pregnancies such as poor memory, irritability, joint pain, etc....

I definitely won't be leaving things (I can't as I can't function properly at the moment) and I just hope I won't be left with too many things that don't resolve.

I'm also nervous of feeling any worse, I know that can happen sometimes before you get better. I really don't want the chest pain/palpitation thing to get any more frequent/worse as it is scary.

Yikes at CFS diagnosis RockinD. I'm so glad to hear that you are fine now.

Thanks for reassurance on subinguals. You are no doubt right that I have other deficiencies. I hope my doctor will be OK about running plenty of tests - it is weird how reluctant so many of them are to look at these things.

I'm taking various supplements including vitamin D in the meantime.

Don't forget that there may be something underlying all of this. All of these deficiencies can be signs of not absorbing things very well, particularly if there is no obvious reason for Vit B12, Vit D, folic acid deficiencies and low ferritin. Ferritin, folic acid & B12 deficiencies can all mask the other so sometimes bloods don't give the whole picture.

CFS is a bit of a bucket diagnosis to be given when in reality there's something like thyroid issues, IBS, coeliac disease, poor diet etc going on. I'm another who got fobbed off with that and a depression diagnosis. Pretty standard way of treating women in the UK unfortunately - we should expect to be tired or depressed even if there's no obvious reason.

You could afford to up your B12 if you're not given injections as it's water soluble and you'll just pee the excess out. I'm on 5000 mcg and I notice if I don't take it for a while. You won't feel all together better until all the deficiencies and any underlying causes are fixed but it will gradually feel like the colour is coming back into your life.

Hopefully you'll get better treatment where you are. There's no need for it be a long road back to normal. Good luck.

Hi,
your symptoms are similar to mine. (Here is my thread

My gp told me she would check my b12 if my ferritin was low, as b12 was rarely low if the ferritin was normal.

I have had some of my blood test results back, but not spoken to my gp.

I have Vitamin D deficiency. My memory has also become really poor, my energy levels low, and I just generally feel weak.

I hope you feel better soon!

B12 injections hurt a bit during and afterwards but nothing you won't be able to stand.

Thank you all, it really helps to share this and to hear of experiences. I'm so sorry to hear of others feeling unwell, I wouldn't wish this on anybody.

Yes, I need to find out why this is happening Blistory, supplements are all very well but there is obviously something else especially as I have had folic acid deficiency in the past. I'm normally pretty healthy so I'm trying not to stress about anything too serious! My anxiety levels have been through the roof with all this and have spent many a sleepless night (despite being exhausted) worrying about not being able to look after my children or indeed be here for them.

I'm very lucky to have an understanding DH, I don't know how I would manage if I was a lone parent and my heart goes out to anyone managing illness alone. He has just brought me two soft boiled organic eggs to eat in bed - apparently they are full of good stuff. On the whole our diet is ok I think - we live in France and have good local farm shops with lots of fresh fruit and veg. I think we are like a lot of people in that we eat fairly balanced (home made soup, salads, stews, pulses, etc) most of the time with odd amounts of junk once in a while (pizza, fish fingers, chips, etc). I eat meat although not huge amounts (but good quality from a farmer friend), chicken, fish, eggs, cheese etc and like pretty well all vegetables and am a great fan of pulses.

Thanks for the info on the injections Nellyinwellies. Of course I may end up not getting them and am a bit pathetic about needles but I don't doubt they are nothing compared to feeling like this.

QuintlessShadows, I read your thread yesterday as part of my 'research' into what the hell is wrong with me. I hope you get somewhere soon and feel better soon. I have your thread in ones I'm watching - good luck.

I don't mean to highjack OP but if I had low B12 levels and started taking over the counter B12 supplements, how long would you expect it to take for levels to return to normal ?

I've been shattered for over a year. I started on AD last June and agreed with my gp in September to go back in the new year if taking a multivitamin hadn't help (I'm often anaemic - I started on the mini pill in June as well to stop my periods as they were wiping me out). I feel like my head is fuzzy, I can sleep during the day but have insomnia at night and my legs are so itchy. I wonder if I should hold off seeing the gp until I've tried a month of berocca.

For me, it needed 3 months at 5000mcg of sublingual daily for the physical symptoms to start to fade but a bit longer for the mental fog. I felt generally better after a couple of weeks but it probably took about 8 months to get back to where I was.

Caveat - I was also dealing with Vit D and folic acid deficiency so I don't know how much can be attributed to each deficiency. Unless it's pernicious anaemia which is causing it, I think any B12 deficiency is unlikely to be the only the only thing going on.

If you haven't had blood tests, I'd get them done first as supplementing will affect any results and could mask a prior deficiency.

Sorry that you're feeling crap.

Because you mention a previous folic acid deficiency I would start taking it again as low folic acid can lead over a long period to low b12. So treating both (in my case) worked for me. And I am only now on folic acid.

Folic acid my doctor told me helps to release b12 from your foods

Hijack away didireallysaythat, the more the merrier (especially if we get better by talking to each other). Sorry to hear how rubbish you are feeling.

I have just realized that the B12 I got at the chemists is cyanocobalamin. I don't think I want to take it now. If you do take an over the counter supplement apparently it is better to take methylcobalamin. If I understand correctly methylcobalamin is B12 in a more natural and useful form and cyanocobalamin is synthetic and has a cyanide molecule that whilst not enough to poison you (!) is maybe not something to take when you are already feeling bad and running on empty. Your body needs to do some sort of process to convert the cyanocobalamin and then the liver has to get rid of the cyanide molecule. I have ordered some B12 methylcobalamin online but might send DH to a health food shop tomorrow to see if he can get some. I don't know what others on here with more experience think of this issue. Maybe I'm fussing but I feel so bad I don't want to put anything in me that could make things worse/tire me more/not be the best possible help.

Blistory did you find out why you had the deficiencies? Gulp at the length of time to get better. I hope in a few weeks I manage to get passed the feeling like I could keel over at any minute stage. I don't like it.

That's interesting OurMiracle1106, thanks. I'll google that info so I can make sure my doctor knows

Thyroid mostly it seems - after many, many rounds of refusing ADs, finally got a referral to an endocrinologist who theorised that the thyroid resulted in low stomach acid which led to poor absorption of vits and minerals. My current endo believes it's the other way round and that coeliac is causing poor absorption which leads to vit and mineral deficiency which results in thyroid struggling.

I don't care - just relieved that it's finally been accepted that the deficiencies, whatever they are, are physical and very easily brought back in line regardless of underlying cause. Having said that, I now have an appointment to test for Addison's disease - I think after ranting several times at several consultants that they're determined to give me a definitive diagnosis. They're such crappy vague but debilitating symptoms that it's been difficult to get taken seriously.

I take Jarrow Methylcobalamin B12, 5000mcg primarily because they're easy to dissolve but Solgar does similar with a smaller size tablet which is quicker to dissolve.

My daughter (25) has injections every 3 m for B12 deficiency She says they are OK but she is in a medical profession-she did say she wouldn't want to do them herself !.She was told its very unusual in young people

Bit of an odd recommendation I guess but will post anyway!! I take a multi vit. It's not cheap but it's bloody good
Had my blood tests done and B12 came back as over 1000 (unreadable) with a note askin if I was on B12 injections. So I know it's working, can find link if anyone wants it. Recommends 6 tablets a day or 3 depending on which one but I take half the dose

Blistory I hope they get to the bottom of your issues - although as you say if you can treat the deficiencies that is good. Well done you for pushing for real treatment and diagnosis. My doctor had started to suggest depression too, I have been 'low' for years but I know I'm not depressed. I thought my lowness was a combination of tiredness and missing living in the UK. Now I think it has been B12/deficiencies all along. I feel like I haven't 'been myself' for ages now.

I have ordered the Solgar Methylcobalamin 5000mcg along with their 800mcg natural folate (not folic acid) and their Cholecaliceforal natural D3. In the meantime I will be having beef liver (B12) and lentils (folate) for lunch and dinner. Not keen on liver and happen to have one in the freezer as we buy boxes of meat from a farmer friend and there was one in the last box, it has been ignored up until now...at least I know it is from good quality grass fed cows that live outside and have names

Postchildrenpregranny, I'm sorry to hear your daughter has this issue especially so young - thanks for the info on the injections!

goodasitgets, I would be very interested in a link please. I think I would like to throw a good multi vit into the mix and would definitely like DH and the DC to take one. Glad to hear of someone with good B12 levels!

Right, I'm trying to motivate myself to go to the health food shop for organic lentils which should be bursting with magic folate that I may or may not absorb but at least I feel like I'm doing something.

Hope everybody feels ok today.

Just to add to the posts above about something underlying the deficiencies, I got a lot of weird deficiencies despite eating a healthy diet. Turned out to be the onset of coeliac disease. Please get them to look for the cause of the problem!

I take these but if you search source of life on there it will show you all the versions and the children's ones too www.amazon.co.uk/gp/aw/d/B003BI2E16/ref=mp_s_a_1_1?qid=1422701666&sr=8-1&pi=AC_SY200_QL40&keywords=source+of+life+mini&dpPl=1&dpID=51slyXp6WML&ref=plSrch
Used to take the gold version but was more pricey

Oops linked to gold version!
This is the cheaper one
www.amazon.co.uk/gp/aw/d/B0011FY76G/ref=mp_s_a_1_3?qid=1422701683&sr=8-3&pi=AC_SY200_QL40&keywords=source+of+life+mini&dpPl=1&dpID=51zm+usFDGL&ref=plSrch

Thanks bronya, I will. Sorry to hear you have coeliac.

Thanks for the link goodasitgets, I think the local health food shop has that brand.