I wouldn't walk 500 or more (lol,not) - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

I wouldn't walk 500 or more (lol,not)

Cb1963 profile image
15 Replies

Now I had a brief conversation with my doctor and I asked what was my b12 was sitting at and he said it was 500,which he said this is mid range,he said readings between 200 and 800 are permissible ,are there any other readings in a blood test regarding general wellbeing that are being over looked, I'm now into my 8th week of getting of getting a daily night time headache, to which I'm getting prescribed a migraine tablets, but at the same time getting questioned on my prescription why do I need the tablets !!! After a weeks supply, when only prescribed 6 days worth, I've ended up with a constant left eye twitching, my ears are now permanently ringing, and my pins and needles are getting worse in my feet,as well as a tingling tongue, I'm still struck on a 3 monthly cycle of injections, and this particular doctor looks at his computer as it is his patient,and not me!I just feel they are missing a trick here,and I'm at my wits end with these banging headaches, it's not normal to be woken up in the early hours of the morning with a headache, and I'm wearing thin of the excuses from this doctor any ideas please, thanks.

Written by
Cb1963 profile image
Cb1963
To view profiles and participate in discussions please or .
Read more about...
15 Replies
EllieMayNot profile image
EllieMayNot

The numbers don't mean much on a cellular level. I had readings in the 600's and yet was experiencing increasing neurological symptoms including seizure like activity, cognitive dysfunction, neuropathic pains, etc.. Finally tested positive for high MMA and HCY as well as antibodies to Parietal Cells. B12 injections help but I have a long road to recovery due to years of deficiency. I say all of this to warn that serum B12 levels don't necessarily mean a lack of need for B12 injections. The specialists (neurologist, rheumatologist) that I saw didn't offer any help at all as they were completely ignorant of these things.

Nackapan profile image
Nackapan

Headaches I've had of all degrees .. they are a neurological symptom . The bnf guidelines day at least 2 monthly or every other day until further improvements.

I had to get my gp to read them.

I'm still on 2 weekly injections. Increasing my vitamin d levels helped. I still have regular blood tests

3 monthly as ferritin low. And keeping a check. Not b12 though as not needed.

Try and get more injections ti see if they help you.

Nackapan profile image
Nackapan

I also had to go through all the doctors in the practice to get what i needed. See another doctor if you can

Cb1963 profile image
Cb1963

Yes,I just don't feel that this particular doctor understands the issues, all he's interested in is the numbers coming from his computer screen, the, symptons are irrelevant, I mean im a tough cookie, I used to go to work as a building labourer when I had ulcerative colitis, that was painful enough, I carried on working when I had an abscess on my appendix until I more or less collapsed and the weight just dropped off me until I had a written warning from work saying I wasn't doing my job properly, so much for my work colleagues eh,told them don't expect me in Monday, sure enough ,in hospital for 3 weeks ,off work for 3 months, I'm now getting older and having headaches every night is brutal, and in the same breath I'm made out to be some sort of pill addict asking for these migraine pills ,between the receptionists writing notes on the prescriptions,then ringing up for an appointment, and then asking why you need an appointment, my head is ready to explode, i feel I'm trying to sort someone's else's business out if that makes any sense, sorry for the moan, but living on my own and getting tablets ready at the table for bedtime is nothing to look forward to ,I told this doctor I'm getting old before my time with this situation ,thanks for your reply,hey ho soon be Christmas eh.

Nackapan profile image
Nackapan in reply toCb1963

Yes I've felt the same. Doing their job. I really hope you get more injections to trial. Also check vit D. I'm convinced it helped me with mine. Hope your bp is okay too. I'm also a tough cookie but head pain ,migrains and any sort of headaches are so dibilitating along with all other symptoms.

I actually said to my Gp "look I can take quite alot of pain , I gave birth without pain relief. Don't want any medals as not actually planned that way but I felt I had to get across like you that I'm not a moaner without good reason.

Keep going to get the treatment you need. Mine at present are less frequent (fingers crossed) TC

Cb1963 profile image
Cb1963 in reply toNackapan

Yep,I don't expect miracles from them,but a few answers and maybe a few more investigations,this has gone on long enough ,I mean, it's pretty obvious if you took your car into a garage with 4 flat tyres the mechanic wouldn't fit your vehicle with a new exhaust system and say there you go,your car is fixed as far as I'm concerned I feel I'm doing numerous trips,and still suffering, is it to save money, or to avoid getting an appointment with a specialist at the hospital, I never thought I'd end up having to try and problem solve on my own health problems,all very strange, it's like doing a crossword without the clues, thanks for taking your time out to reply, and I'm sorry if ive been a little vague

Nackapan profile image
Nackapan

Looking back I see you have not had the correct treatment for some time. Di see another doctor. Get them to trial you on more injections. The other Meds you are taking haven't stopped the headaches.

Gambit62 profile image
Gambit62Administrator

actually being woken up in the middle of the night is a classic pattern for migraines.

Have you been prescribed triptans for the headaches? - if so you really need to keep within the guidelines - overdose is quite unpleasant.

As others say the serum B12 results are meaningless if you are on injections. BNF now states 2-3 months for maintenance where there is no neurological involvement and 2 months where there are neurological symptoms (BNF). Current guidelines do not recommend testing of B12 levels unless there is a reason to think treatment is not being followed (NICE and BCSH guidelines)

BCSH = British Council for Standards in haematology

Cb1963 profile image
Cb1963

Yes I was on propananol and to take a single rizatriptin,at the onset of a headache, but the,headaches did stop,for a few weeks, but then came back, the propananol was reduced and stopped, and started on topiramate, and a tablet for the onset of a headache called naratriptan,I keep within the dose, and would not take any more than the stated dose, however like I said there is an issue between either the pharmacist ,the doctor or the chemists, as it clearly states that no more than 2 tablets to be taken in a 24 hour period, I get 12 tablets which works out 6 days of tablets, and I'm getting 2/3 headaches in a 24 hour period someone had questioned why I was asking for a repeat prescription after 7 days,even though it the prescription wouldn't be then ready for another 3 days, and also it was stamped stating make an appointment with the doctor, and yet I had questioned them, and informed them all the time what was going on,so all in all I waited 10 days not the 6 ,and my doctor will not budge from the 3 month injection cycle, and yet I know my pins and needles in my feet has gone worse, as well as the ear ringing, and the tongue tingling which has all happened over the last six months, it took a lot of convincing to get a blood test as I was getting an uncomfortable deep rumbling sensation in my chest, and the receptionists acts as a nurse said oh its probably nothing I got my blood test and she was more or less apologetic saying the doctor has written you up for folic acid,its just oh so matter of fact like its no big deal oh and throw in a constant eye twitching, all fairly new ,and having major stomach issues in the past just feel the boat is sailing, I appreciate you taking time to reply, many thanks.

Stayfocussed profile image
Stayfocussed

Hi Cb1963...did you have the headaches before you started b12, because it can cause headaches and tingling, look up side effects. I only take a small amount of b12 and my headache, ringing in the ears and numb toes starts. Folic acid can do it as well. Problem is you can get the same symptoms from too much b12 and not enough

Nackapan profile image
Nackapan in reply toStayfocussed

When toy say you take a small amount of b12. Are you on oral tablets?

I get the standard hydroxocobalamin 1mg injection. I di get a headache and ringing in the ears . I di when I'm due it too. All very confusing at times

Stayfocussed profile image
Stayfocussed in reply toNackapan

Yes...I only take a 1/4 of a tablet every 2 or three weeks and then I get a headache for a few days. It's difficult to get it right

Cb1963 profile image
Cb1963 in reply toStayfocussed

Yes ive had these headaches for over 3 years on and off, but not for this length of time, I think it's been around 8 weeks or more, ive lost track to be honest, as every day starts to become a haze, I only get the injection every 3 months, and only had the folic acid prescribed for a few weeks when I had the chest tremor, I'm not on the folic acid at the moment, I don't look forward to going to bed,knowing fine well I'll be woken up with a thumping headache, an absolute nightmare thanks for your detective work and I'm always looking for solutions, many thanks.

Cb1963 profile image
Cb1963

I'm just on a 3 monthly injection from the doctor, so a trip to a health shop may help then,as long as the tablets can get absorbed into my system I suppose it will do me no harm, thanks very much again.

Nackapan profile image
Nackapan in reply toCb1963

I'm convinced raising my vit d leveks helped reduce my headaches. Not sky high. 73. And I drank loads of mineral water at night that appeared to work. Also very regular food and routine. I hope they reduce very soon

Not what you're looking for?

You may also like...

Iron

Hi. I have low iron as well as PA. After 6 months of iron tablets prescribed by the doctor my...
Alpacaem profile image

high levels of B12 in blood

I have been self injecting B12 for around 4 years. I am prescribed 3 monthly by my GP and...
Countrylou profile image

Shall I start taking 1000mcg lozenges, or should I give it a bit longer?

I posted before Christmas but I would like some further advice: a blood test showed I was very...
petal02 profile image

Ongoing b12

Started this thread (as suggested by sleepy bunny) It is regarding my partner and his struggle of...

Long term headaches

I'm quite fortunate to still be receiving my B12 injection, however I'm suffering with headache...
Cb1963 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.