What do you do if your B12 levels went from really high to "normal" but you are still feeling horrible?

[christie]

I have tried to ignore my health issues for a while now as i got to the point where i was so upset of feeling like i was being pushed from pillar to post with no real answers. I was diagnosed with a b12 deficiency about 4 years ago. I became really ill with multiple of bugs/illnesses at once...doctors eventually did blood tests and my level was 84!!! i then had the usual top up injections and was told that would be it for three months. i didn't feel better and i carried on getting ill. They then checked my levels and i was only around 150. They then gave me weekly injections and a while later checked my blood again and i was 1000!!! i couldn't understand how i was allowed to keep having the jabs even though my body didn't need it. I then went down to an injection every two months and and i am on 1 every 3 months, but find it difficult at the end of the third month. So that's my life story up until today where i am feeling dreadful!! I had an injection in November and by mid December i was feeling very tired, my legs keep going numb and tingly, ear ache, a constant buzz in my ears at different times of the day and my balance is sometimes off. I slept through most of Christmas and this is my favorite time of year i rang the doctors and there were no doctor appointments (as usual) so i could either wait 2 weeks or speak to a nurse. i went and saw the nurse and took my injections just in-case, normally i have to fight for a jab but this time she did it straight away before even speaking to me and finding out how i was feeling....i was only going in to talk about what i should do. The nurse went on to say my results show i am very low and i need to have three injections in a week....i was very surprised at this but it made sense to how i was feeling. I went to the receptionist to book the jabs in and asked her for a second opinion on my notes and she said the same as the nurse. I nearly booked the appointments but something didn't feel right so i asked her to check with the doctor and call me when she has the answer from her. I didn't hear from them that day so i assumed i should go ahead as they instructed....when i finally got through to them they stated i was fine and didn't need an injection for another three months- they read my notes from 4 years ago when i first got ill!!!! i am outraged that they were happy to top me up with injections i do not need!!!! I find the doctor has no clue what to do with me now as i have seen three specialists and no one can find an answer of why i am like this. As my b12 levels are high.....why am i still feeling like this??? I feel like i am going mad and a complete hypochondric!! I am only 28 but feel i am in a 78 persons body....people do no understand and think i am exaderating but some days i really struggle to get out of bed (Sorry for the essay but just needed to get this off my chest as i dont like telling anyone as i sound like a complete winger!!) Thank you for reading to the end

[Hidden]

Hi,

I'm sorry you are feeling so bad..and that the B12 injections appear not to help you. If treatment is not working then further investigations are wise..things like thyroid function, folate status etc, besides liver function etc..

To have had an extra B12 injection should realy not do you any harm at all, most people would have been delighted..Its only logical your serum B12 reads higher after a B12 jab, some people have higher serum levels than others, with the same amout of B12 treatment, some never get that high, but if 1000 is injected say, and bloods are taken relatively soon after that injection, then its not uncommon to have a high reading of serum B12.

I can not imagine the extra B12 injection doing you any harm, hope it does you good and I'd insist on further investigations as to why you were B12 def in the first place, and why you are not doing well on current treatment..sorry can not think of anything ells..

Kind regards,

Marre.

[christie]

Hi Marre,

Thank you so much for your response!!! I have a vitamin d, serum folate, ibs and b12 deficiency and they cant find out the cause to any of them. I think they have tested my thyroid but not my liver so i will ask the doctor when i see them later today.

I cant belive i still feel like this having so many injections! The investigations continue.

Thanks again

Christie

[nostoneunturned in reply to christie]

Hi Christie, no need to worry about having extra B12 injections, they will do no harm as B12 is not toxic.

The problem is that they seem to have done no good. You refer to a folate deficiency. Folate levels should be in the top quarter of the reference range. This is because folate is needed to complete the conversion of the type of B12 used for injection in the UK, hydroxocobalamin, in to methylcobalamin, which is the form used by body tissues. One reason you might need so many injections could be your lack of folate for conversion, called methylation, and so your body, lacking folate, is simply letting the B12 (hydroxocoblalamin) be excreted via the kidneys as conversion to methylcobalamin cannot be achieved in the absence of folate. B12 level blood tests should be done before an injection.

I do not see why they think that they have to find a cause of Vit D deficency, this is common in UK, just ask GP to prescribe Vit d and carry out the requisite checks on it and also the corrected calcium levels as calcium is an electrolyte and must be retained within certain limits, as GP will know until you achieve correct levels.

Perhaps you do not have IBS ( I am not a doctor) but are suffering digestive and bowel upheavals essentially owing to B12 deficiency and I hope that when you get your B12 levels sorted out that the IBS disappears. Mine did, perhaps I was just lucky!

You can read about B12 deficiency/pernicious anaemia on the main site:

pernicious-anaemia-society.org

The forums are open there, and joining gives access to the helpline's qualified adviser.

Informative books are "Could it be B12?" by Sally Pacholok and Jeffrey Stuart

"Pernicious Anaemia: the Forgotten Disease" by Martyn Hooper.

You have a right to have copies of blood tests given you. This is your right as a patient, do not let anybody argue with you, it is your body, not the doctor's.

[Raoy in reply to nostoneunturned]

Make sure it's D3 not just D I take 20,000 ius daily D3 is the corner stone to good health.

[nostoneunturned in reply to Raoy]

Yes, Vit D3, thanks for reminder.

[christie]

Hi nostoneunturned (Sorry do not know your name)

Thank you very much for your information and help!!

My folate levels were low and they told me to take regular tablets to top me up. Vitamin d they said i was also low and deficient so need to take supplements. I have had all tests, my thyroids, kidneys, liver and all other levels are fine and they cannot find the cause of the problem. I have just got back from the doctors and she wants me to see someone who specialises in ME as she thinks it could be this. i have researched into it and all of what is said does relate to me.

in terms of IBS i have had this for a couple of years now and even when i changed my diet to gluten free i still got the reoccurring symptoms. Even when my b12 levels were high i still had problems. i am glad to hear your digestive and bowel issues disappeared...some weeks i am "normal" but others i really am not.

Thanks again for your advice you and Marre

[helvella in reply to christie]

Never, ever believe "fine" or "normal" with regard to thyroid levels. Especially if, as so often, they only did a TSH test. Get the numbers. And the reference ranges. And hop over to Thyroid UK here on HU.

[nostoneunturned in reply to christie]

It would be very useful if you were to give the results with ranges of blood tests. I interpret your initial post as meaning that the nurse recommended more injections but you did not have them eventually as your initial notes were (mistakenly?) read, and you are outraged that the nurse? had recommended injections you feel you did not need. Many people would envy you the chance of the extra injections I deduce you did not eventually have. Also, never, please, ask for a receptionist's opinion no matter how desperate and vulnerable you feel, she is not medically qualified to give one and should not have said anything.

Presumably you are taking folate prescribed by doctor and vit D3 ditto and your levels are being checked? Is your ferritin OK? The optimal levels, but higher is good, are:

Vit D 125nmol/L - 175nmol/L or 50ng/ml 70ng/ml

Ferritin >90mcg/L

Folate >10mcg/L

> = "greater than"

B12 optimal level for normal people, not having injections, varies from 500ng/L, which is the absolute minimum acceptable level, upwards. You are having B12 problems and so your blood test B12 levels will fluctuate but do not be disturbed if they go up beyond the reference range as they will: believe me, that is good. B12 injections are not given to aim at any specific range, they are simply to get B12 levels up high and keep them there. It also takes some time for the higher levels of B12 to alleviate symptoms.

You might like to know the British National Formulary's guidelines that doctors are supposed to follow regarding B12 injections:

"British National Formulary. Section 9.1.2

Hydroxocobalamin

Dose

By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1mg 3 times a week for 2 weeks then 1mg every 3 months.

Pernicious anaemias and other macrocytic anaemias with neurological involvement

initially 1mg on alternate days until no further improvement then 1mg every 2 months."

The differences are important for the treatment offered should take account of whether or not you have neurological symptoms and you could have indications of neurological involvement in my opinion (not a doctor, just been there, know the extreme exhaustion, tingling, etc) from your symptom descriptions and it might be useful to know the above and also know that regarding the first para there are many people who do not make progress on just 1mg every three months after the loading doses over 2 weeks. as you have already found.

You will read in the books I have mentioned in my post above that B12 deficiency/PA is too often mistakenly diagnosed as ME or other diseases. Seems your GP is falling into that thinking mode also. According to the Pernicious Anaemia Society

puzzled GPs should refer those with B12 issues and symptoms to a haematologist, not a neurologist.

You have a right to ask for a referral to a suitable specialist, you know.

I have already above given a link to the Pernicious Anaemia Society, which also deals with B12 deficiency, and great benefit is had from joining thereby getting access to the helpline open to members.

Please take note of helvella's and my advice re getting copies of blood tests with ranges. Trust nobody! If I had known not to trust doctors' "Fine! Normal!" I would never have got into, one, a complete thyroid screw-up lasting years and two, a complete B12 ditto.