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.

Hi all your symptoms sound familiar to me, I am currently off work as anxiety is very bad, dr tried me on some Ads which was a disaster and made me vomit constantly for a week - never again!

My symptoms are feeling anxious for no reason, nausea, diarrhoea, tiredness, fuzzy head and generally feeling off colour. Am seeing my gp again on Monday and going to talk to him about having some bloods done. I wonder about coeliac as my stomach is so bad most of the time! I am a single parent and have been really struggling, have spent the last week staying at my mums which is slightly when you are 36!!

The problem is most of the symptoms can also be linked to anxiety so it is hard to know what comes first!!

I was really low when they found mine and had 5 injections over A two week period and then every 12 weeks for 18 months.

Now I'm Ok or have been on my previous blood tests

Your MCV is high...this could be macrocytosis (over large red blood cells) due to pernicious anaemia (B12 deficiency) or something else. You say you do not drink problematically now...but too much alcohol can be the culprit, other causes should be excluded too. I think you need to have a good chat to your GP about your symptoms and your blood results. A good Gp should be contacting you about this. Did you have any biochemistry done, ie liver function tests, renal function, salts like sodium and Pottasium, inflammatory markers eg, ESR CRP?

I was only just below the limit for treatment when they tested me, but I had an on the ball GP who asked me about my diet, and when he could find no reason for my B12 to be low he tested me for pernicious anaemia - which I turned out to have. I could supplement b12 orally till the cows come home but it wouldn't help because I won't absorb it properly. Now I have injections every three months, much better.

I've also had several blood tests come back as low folic acid but in my case that's likely related to a medication I'm on, and supplementing that with tablets sorted it out.

girliefriend, I hope your GP will do bloods for you, it does sound like something is up with your gut. It must be so hard being a single parent - I would be at my mum's too if I didn't have DH. I hope you get sorted soon, coelic does sound like a possibility. They should at the very least do the blood test for you (although I don't believe it is totally reliable). You could try an exclusion diet, although don't do this before testing because you need to have been eating gluten up until the test. Good luck and insist on bloods being done.

Grammar, it was the MCV that got me searching in the first place. I know that alcohol can interfere with B12 absorption and the efficiency of intrinsic factor. I was a binge drinker for many years (never spirits but wine and beer). Liver function tested and is fine, there is something on renal function (creatinine) which is bang in the middle of normal range. Sodium, potassium and chloride all bang in the middle of normal range too. At the moment I'm thinking either genuine pernicious anemia or B12 deficiency due to a combination of not great absorption and my past drinking catching up with me at a time when I had an infection and had to take a load of antibiotics (apparently they deplete you of B12 amongst other things). ESR was fine and I'm not sure if we did CRP.

OurMiracle1106 and Naoko, there seem to be lots of us about. I hope you are doing OK on the injections.

I have pernicious anaemia and coeliac disease so definitely can't absorb B12 orally. I self administer the B12 injections, yes sticking a needle in your thigh muscle stings lasts less than two minutes and then no further pain. Infinitely better than wasting my life in the doctors surgery waiting for a nurse to cause the same amount of discomfort.

I've suffered with anaemia and deficiencies all my adult life. I used to suffer with iron but since having an implant and my periods being stopped my iron has been okay. However I've suffered vitamin D as well (sunlight) despite being out all summer.

They also found low white cells on my last blood test and I need another on Monday (4 weeks after the initial) to check.

I keep getting ill. And it takes me so long to get better

Wow at self injection lonecat. Yes though to two minutes of sting to then feel better. I'm all sore today, my joints are sore which I believe is par for the course with b12. I had another good look at my tests last night and I'm borderline in alkaline phosphatase, apparently when this is low it can be a sign of pernicious anemia. Really, on paper, my doctor should have been considering this as a diagnosis since those tests were done in September. I'm pissed off that I had to hassle him into a b12 test and only had it done last week. He had the info in my original blood tests to alert him to anemia.

OurMiracle I'm sorry to hear that you are ill. I hope you find something that helps soon. It isn't nice when you feel unwell and don't know why. At least when you know you can do your best to fight it. Good luck with your tests.

Tough you should have the option of self injecting, next time you see the nurse ask her if you can do it yourself and if she is happy with your technique there should be no worries about you taking it on yourself (Im a nurse)

Tough I just asked I'm a vet so like you injections are routine.

Well, my doctor isn't being terribly helpful. He has prescribed oral b12 and doesn't see the need to test ferritin or folate. I have phoned the lab that did my previous tests and they are willing to do the tests without a prescription as long as I pay for them. I'm going to go along tomorrow and see how much it would be and as long as it isn't too much I will just do them.

He says we can look at injections if I don't respond to oral treatment. He doesn't seem to think that my b12 or anything else is particularly low.

So, I'm taking b12, folate, floradix, vitamin d, probiotics, cod liver oil and vitamin c.

I'm making myself eat liver and plenty of green leafy veg/pulses and I'm investigating other sources of b12 and folate. Seafood seems to be good, I'm just concerned about the high sodium level as apparently high sodium is not good for potassium levels and potassium can drop when taking b12 supplements.

Does anyone know anything about the potassium link? It actually says in my supplement leaflet that potassium levels should be monitored but my doctor appears unconcerned....

Might get that tested at the lab too, my level was in the normal range before. Apparently potatoes are good for potassium so having them with my liver!

Sorry to hear that he wasn't overly sympathetic - I was hoping that you'd get different treatment abroad.

You're probably better doing your B12 by yourself with the sublinguals - if your symptoms are related to this, you will notice a difference. Just a bit slower that the injection route. I honestly don't know why doctors ignore reference ranges but it looks like he would be happy just to get you back in range. I don't think that's good enough and that you should concentrate on getting your levels to at least halfway in the range.

I don't know anything about potassium levels but the Health Unlocked forums are usually full of people with more knowledge - the usual caveats apply about obsessive individuals and quack solutions.

And yy to getting further tests if affordable - if nothing else it gives you a baseline for future comparisons.

I had all your symptoms and after a blood test my iron came back as 7.

Been on tablets and feel much better, could be low iron levels?

Beachcomber, I will PM you. Your level is really, really low. Your symptoms are very similar to mine and I understand the frustration of not getting anywhere with the GP. Hopefully info I send will be of some help.

Thanks again everyone for your posts, this thread is really helping me and thank you gatsbygirl for your PMs.

Blistory, I think you are right, my doctor is happy to get me within normal lab range. I want to get properly better and be at optimum level.

I went to the lab today and got them to test; folate, ferritin, vitamin D and potassium. Apparently when you take B12 and start to get better, your body goes into overdrive repairing things and this uses lots of potassium, you can end up deficient which, not only slows down the healing process, but actually makes you ill. I have read that you have to be careful taking potassium supplements as they can interfere with B12 absorption. Bit of a catch 22 situation that one. I'm eating potassium rich foods and will feel better getting my level checked (especially as it actually says to do so in the B12 leaflet!). I will get the results this evening.

I have had a couple of days of feeling really terrible and collapsing into bed around 6pm. The DC and DH are being lovely and brilliant and looking after themselves/me. Feel slightly less terrible today so hopefully the B12 is beginning to work.

Wishing everyone a good day and good health. Thanks all.

Have just realized that my B12 was measured by the lab in pmol/l whereas I think it is usually expressed in pg/mL.

Having looked at online converters that would make it about 161 pg/mL. Whilst that it still pretty low it isn't quite as bad as 118! It goes a little way to explaining the lab's low ranges (although they are still too low IMO).

Beach, it's low. As long as the lab expressed the range in the same measurement ( which they will have done ) that's all that matters.

Glad to hear you've been feeling a bit better and hope that you continue to see improvements.

When do you get the other results ?

Don't worry Blistory, I know it is low and needs to be much higher for me not just to get better but to really get well. I feel (a bit) better knowing that it isn't 118 because that felt dangerously low IYSWIM.

I am starting to improve, still feel ghastly but I can feel differences. I've been on the B12 for a week now and it does seem to be working. I'm so relieved to have found something concrete to do.

I have the other results and would be very grateful for any feedback, especially as I did them independently of my doctor. They aren't too bad apart from vitamin D.

POTASSIUM 4.3 mEq/l (VR:3.5 ‡ 5.1)

I was 4.2 in September so this seems to be remaining stable which is good as I was a bit paranoid about having a sudden drop as I hear it is horrible if it does happen. Will keep up potassium rich foods.

FERRITINE 131.0 µg/l (VR:15.0 ‡ 150.0)

I don't know much about ferritin other than I know that too low is not good and too high isn't either. I am at the high end of the range, is this good/bad/normal? I have no idea. Things I have read seem to suggest that worryingly high is when you get to the 1000ug/l levels. I have been taking Floradix in case I lacked iron so perhaps I should stop that. I did wonder if my ferritin might be highish because I'm not making red blood cells properly at the moment and therefore not using up my iron stores, but perhaps that isn't really how things work? Not sure what to think of this one but perhaps it is fine. Would be grateful for opinions.

FOLATES SERIQUES 19.8 nmol/l (VR : 10.4 - 42.4)

Again not sure what to think here - level seems fairly bang in the middle of normal range but is that actually enough? I was surprised by this one, I was expecting it to be low. Again would appreciate opinions, is this perfectly fine or is it (like B12) better to be at the high end? Haven't read up on it yet.

VITAMINE D (D2 + D3) 52 nmol/l (VR:75 ‡ 150)

Clear deficiency here although according to my research not terrible. Definitely needs something done about it. I have been taking vitamin D3 but not for long and perhaps not enough. I'm taking stuff I got from the chemist, it is D3 (400ul) and calcium (600mg) and you are supposed to take it twice a day. I suspect that isn't enough vitamin D to really boost levels also it comes in a hard pill form so I wonder how easy it is to absorb. I have already ordered Solgar Natural Vitamin D3 (Cholecalciferol) - 1000 IU in the capsule form so will start on those as soon as they arrive. Again, I would be really grateful for any opinions/experiences of vitamin D issues.

Thank you so much everybody.

Have just realized that the folate test is almost certainly for plasma levels rather than RBC levels (considering the range). Not sure if this changes anything.