Hi I was told by my specialist during the week that I have B12 deficiency and to go straight to my GP and start B12 injections.
Im feeling very alone and confused as I have had huge struggles this year. I have ADHD anxiety and was told my depression had returned earlier this year but i kept on fighting as I couldnt lose my job. But it was different, my head just wont work. I cant think, remember or function. Its like I cant get past the first though and i cant find things in my head. The exhastion is awful and the weight ive put on trying to energise myself to keep going. Dizziness. Bad kneck and back tension. Headache the just wont go. Pains in my right arm and fingers.
When i got to a gp she showed me results from 2 years ago and tey were 230 within the normal range but she said should hae been treated then given my symptoms. Its now much lower but they didnt tell me what.
Anyway 'do I have a right to feel B12 is an answer to how ive felt and terefore to have hope?' I had my first injections yesterday.
Please help me and good luck to you all xo
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ESaust
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Yes, it sounds as if it could be, and some people have other conditions alongside this as well. Do ask for a copy of your test results, it's useful to keep your own records for future reference/change of doctor. Some people feel better immediately, some take longer depending on how long they were deficient: you will probably be quite run down by now so give yourself time and TLC. Some need more frequent injections than the number offered, so keep a record of your symptoms and any improvement/worsening. Some also top up with sublingual B12 or nasal spray which they buy themselves. You may need a general multi vit, other B vitamins (there's lots of info if you search this site) and check your folate and ferritin levels with the doctor.
They are also symptoms of an underactive thyroid (which often goes hand in hand with B12 deficiency). Have you had a thyroid test and what was the actual written result. Doctors have a tendency to say you are OK when you are often not. Same as some doctors with B12 deficiency.
Keep going word for word you have mirrored my story. The good news is that with loading doses the symptoms improve but you do have to be prepared for them to return. I have also never had a b12 deficiency diagnosed dispite having levels of 145 or lower for 5 years and after many years of going to and from the doctor with neuro symptoms. They have now decided I have pvfs/me, the loading doses I self injected for months but it was worth the investment. You should also top up on vitamin D and folic acid to get the most benifits from the injections. Lastly you need to work on your stress and anxiety, cbt and breathing have helped me. Good luck if you want any more information please ask happy to help. X
Martyn Hooper on his blog recently talked about how people are often misdiagnosed with ME/CFS when they actually have PA (Pernicious Anaemia). Scroll down to Aug 4 post.
Get methyltetrahydrofolate aka active folate if you can afford it. IF you had the genetic defect where you can't break down the cheap folic acid, it turns into glutamate and that can cause further problems in some people. Better to be safe than sorry, I think.
Sounds just like the symptoms that I had, Iwas down to 150 blood serum, and only got treatment because I went to private G,P. You are on the right road now, but improvement might not happen immediately. Also get your Thyroid looked at . People often have both ---autoimmune sometimes comes in twos. I'm suer that you will soon begin to feel better./Don't forget to take plenty of FOLATE ---Very important! It works together with B12. Best of course in the shape of green leafy vegs, but failing that METAFOLIN, a superior supplement folate. But cheer up, you have friends here./You need never feel alone again. We are a family!All the very best to you.
I'm so sorry you're having such a bad time Esaust.
Be encouraged though that you now have such an aware specialist and GP, who will treat you with injections, Extreme fatigue, anxiety, depression, memory loss, headaches, dizziness and tingling numb limbs are all neurological symptoms of B12 deficiency and you have done well to keep on working.
My relative had severe deficiency misdiagnosed for years as ME, then dementia. She made a really good recovery on monthly injections, supplementing also with Jarrows Methylcobalamin 5000 mcg sublingually (good reviews in Amazon for neurological symptoms).
Some people experience a slight worsening of symptoms at first, as though the nerves are coming back to life - before they improve.
When you begin to feel better, read up as much as you can. The following gives good information:
"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".
"Those with initial neurological deficit should receive Hydroxocobalamin 1000 u,g, i.m. every two month. No further testing for cobalamin levels is required."
The above latest BMJ research document is supported by many research papers and has a useful summary. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....
Very best wishes for a good outcome.
PS. I would hold off on folic acid supplementation until your B12 levels have risen.
There is quite a bit of evidence linking ADHD and autism to maternal B12 deficiency and B12 absorption problems tend to run in families so more than likely that B12 is at least a part of the problem.
Unfortunately there is so much overlap of symptoms that other things like thyroid may also be involved.
You may find Sally Pachollok's 'Could it be B12? a worthwihile read in terms of understanding what B12 deficiency is and what causes it ... and what conditions it gets confused with.
There are many different schools of thought on folic acid. You need folic acid to absorb B12 and if you have high folic acid levels it can mask a B12 deficiency.
I'm of the school that says, if you have B12 deficiency and you are folate deficient, or low in folate then you should supplement both as your body won't be able to process the B12 unless it has adequate levels of B12 - and for many that seems to mean folate in the upper half of the normal range.
Methylated forms of folate can cause some people problems so best to approach it with care - definitely not saying don't but am saying be careful - it doesn't always help and can make some people feel worse - so if you are one of those people don't use it.
Good that you have a doctor that has the self confidence to admit that they made a mistake and should have treated you earlier - hope that the message is starting to get through that clinical presentation is extremely important and the test results can't be interpreted in isolation.
Folic acid should never be taken while B12 is very low as it gets 'trapped', cannot be used, and can orecipitate or make neurological symptoms worse - info on folic acid from a haematologist in this video:
"Folate is required for the synthesis of red blood cells, those tiny disc shaped cells that carry oxygen in your blood to deliver it to each and every corner of your body. However, B12 is required in a reaction that converts folate into a form usable by the body to make red blood cells. Without that, folate cannot participate in the synthesis of red blood cells. So without B12, folate is literally of no use! ". - 'The B12 Deficiency Survival Handbook', by Dr Aqsa Ghazanfar
"If there is concomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.
In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid is recommended until vitamin B12 is replete to prevent subsequent folate deficiency after replenishment of B12 stores.
Please, if you can at all (I know how hard brain fog can make it), do some reading on GABA/glutamate. Start looking at what you are eating. They are filling everything with free glutamate. You can find lists on the net of the names they hide it under. Check out low stomach acid. (hypo-chlorhydria, achlorhydria)
Don't give up. Knowing there is something wrong is where we all started. Go get all the injections they will give you and if that's not enough ask for more, if they say no, go out on your own and find a way to get more.
I am experimenting with rectal delivery (MB12) right now, and it's going well, not gross or painful, and I can take as much as I want.
There are needle exchange programs in most counties in the US. Some people are even getting dry B12 pellets and compounding their own MB12. There is sub-lingual that can supplement the injections they will allow you to have.
So there are many many ways to skin a cat, and google is your friend.
"Its now much lower but they didnt tell me what. "
You have the right to have a copy of your results. There may be a charge for a paper copy. Some people can access their health records online now in the UK.
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