lowB12 symptoms : hi , I am at my wits end... - Thyroid UK

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lowB12 symptoms


hi , I am at my wits end just now my blood pressure is high and my heart rate goes of the scale ,this is always when I have my pressure taken at the hospital or GP it does modify when I take it at home (white coat syndrome ) but my B12 is very low and I cant get my doctor to re test since the first one 2 years ago , I have graves and my t4 and TSH are ok but I feel so anxious and edgy and have no energy could this be low B12 symptoms that affect my blood pressure and this awful feeling of being on edge and shakey I cant relax , doctor wont agree to B12 tests again or my vitamin levels, so I have no idea if they are within range I need some advice as to where i go from hear fell so frustrated thanks if you could help

10 Replies

I've got white coat syndrome too - it is awful. My BP is high the minute I go near the surgery - it is even when I use the surgery d-I-y machine so I bought one for myself to and Take my BO myself at home. I download the surgery BP record sheet and if I need to see the doctor I take my figures along with me and they're happy wth that. I bought my machine on Amazon but you can buy them quite reasonably in places like Lloyds Chemists.

How do you know your B12 is low if you haven't been tested for two years? Again I got fed up with begging to have my B12 and vit D tested and paid for them myself. You can do them yourself with a home testing kit from Blue Horizon - you can find details of them and other places you can have tests done - I like the BH home fingerpick test though.

I eventually managed to have my B12 tested by the NHS but they wouldn't test vitamin D and I was only just inside the lower limit of the B12 range but my endo / doctors were quite happy about that so I bought some Jarrows Methylcobalamin B12 and took that until my levels were right at the top of the range. Same with vitamin D - I use a daily D3 spray to keep my levels up. My ferritin and folates are fine thank goodness.

I don't know what treatment you are on for your Graves - I was on block and replace for a year and when I started taking carbimazole my pharmacist told me to take vitamin C along with it so if you are taking carbimazole it might help you to do that - I also took 100mcg + zinc every day. I also take co-q10

Hope that is of some help to you.

it was only 4 months ago that I persisted to know my B12 which was about 2 years ago and the only time it was tested even then he said it was within limits, I do have a Lloyds BP machine and when.feel calm !!!! I take it and it is much lower than when done at the clinic/GP I have tried to ask him for my Vitamin levels to be tested but no such luck, I really am at my wits end with NHS If I do a home fingerprick do I have to send the results in or can I see the reading myself, I need to know the reading so I can arm myself before I see my GP, I have tried Vit C but it gives me awful tummy ache, how do I know if I need zinc and would it cause any problems if I don't need it, sorry to ask so many questions but your people seem to know so much and I,m thankful you,r there for support

I discovered while on a study for something else that the way to take your BP is to put the cuff on, sit quietly fir five minutes, I often read, then start the machine.

When it stops wait another five minutes then do it again, then wait yet another five minutes and do it for the last time.

Don't talk to anyone while you are taking a reading.

You will find that your results are much better than when you just take a random test in a hurry, after sitting quietly for all that time you will be calm.

I always read or even just look at a magazine in between then just shut my eyes while the machine is recording. I record on my sheet after each one - I could work out an average of I wanted to dut I don't bother.

Sorry, missed this - you are sent a kit with a lancet to prick your finger and a teeny little test tube that you drop the blood into. Once you have done that and filled in your details you pop it into the envelope that comes in the kit and then post it off. Two days later the results will arrive in your inbox along with a short report on their findings. I use Blue Horizons which is an accredited lab ( think all the labs listed in Thyroid UK site are ) and I have found and others have also said that the results are pretty much the same as the NHS results.

I didn't know whether or not I needed the zinc - it was just in with the vitamin C - I hate to say it but I don't know why.

So your B12 was 151 four months ago?


Are you taking any supplements? If not - don't start. Insist your doctor tests for intrinsic factor. That's a very low B12 result.

frian in reply to Jazzw

every time I ask him to test it he says no need its within limits yet when I saw my endo today he said it was low and to have it tested again, trying to get answers from him about my vit levels fell on deaf ears his reply was see your doctor ,at the moment I don't take anything but carbimazole for graves I,ll make an app. to see my GP and see what he says but I don't hold out any hope for re testing, I really need to know if that is why I feel so rotten all the time thanks for any advice

gabkad in reply to frian

fran, just take 5000 mcg of B12 per day. Even people with pernicious anemia will absorb enough to improve the situation. Here in Canada the only people given B12 shots are those who cannot be relied upon to take it orally, for whatever reasons. Over here oral B12 is not a prescription item. People go and buy it themselves. Perhaps you could do this.

You can't overdose on B12. Excess is excreted in the urine. So if you do go the 5000 mcg methylcobalamin oral route, if low B12 is what ails you, 2 weeks in you ought to have more energy.

If B12 is not your problem, then you won't. Sounds though that B12 is a problem.

Just take a B complex along with it in order to balance folate and the other B vitamins.

I took 5000mcg B12 and boosted my B12 from the low 300s to over 1000, over the limit but the report said it wouldn't cause problems. I had a B12 holiday and my B12 dropped quite a lot so I'm taking less but still taking it on and off.

If your endo has said your B12 is too low then surely your GP really has to do something about it.

Hi don't rely on usual blood test for B12 deficiency, not always reliable. For last few years mine has been 400-540 yet just found out I have pernicious anaemia, and have had it at least since 2012 based on symptoms and antibody tests in 2012 (GP ignored results). I had/have all those for PA and neurological ones were quite bad, to point I've been advised might not be reversible as been untreated for so long. Also if you start taking supplements it can skew your results, I believe up to 4 months afterwards. Also having PA can give a false high reading of B12.

I had been taking 5000 mcg B12 for 2 months and 1000 mcg for 5 months prior to that and it hadn't helped my symptoms at all. I started B12 injections yesterday.

Can't your endo authorise blood tests? I know when I saw a neurologist they said I needed blood tests and I just went along after my appointment to the path lab in the hospital to have them done so nothing to do with GP. If not change GPs, they can vary so much even at the same surgery you'll find GPs all do things differently.

Got all the info from people on here. The two main websites I looked at for info were b12deficiency.info/ and pernicious-anaemia-society....

The only way I got diagnosed was doing research myself and giving it to GP having got copies of my medical notes and going through everything to find what GPs had missed.

My GP actually thanked me for going through them as said they just don't have the time! Although to put that into context I did ask if they go through new patients notes when they move to a new surgery to get a view on what's happened in past when ongoing undiagnosed symptoms. Makes me so angry as if old GP had acted on results and symptoms back in 2012 or even told me exactly what they had tested me for and the results (the said they were normal when they were positive for 2 lots of antibodies) I wouldn't have gone through 3 years of hell, lost my job and ability to work.

Until recently I had always blamed my symptoms on being hypo but now seems not the case, although will have to keep an eye on thyroid issues once B12 injections kick in.

i am so sorry you have had such an awful time with you GP , I can sympathise with you I have been beating my head against the wall with my GP they are so ridged in diagnoses and don't understand that we know how are bodies feel and try as you may its so hard to make them understand that, I have a new GP an he seemed ok but is so unwilling to test more than the standard blood test,which don't always tell the full story, I have another appointment to see if I can get through to him this time, I wish you well and hope the B12 injections give you good results

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