Receiving B12 injections but still tired

Thank you for the great advice. I have started taking supplements and I will see if this helps

b12 deficiency is a neurological disease and once you have it, the damage it causes is irreversible.

Thank you! I will be going to the doctors armed with all sorts of information when I next pluck up the courage to go. I am convined I need the injections more than every 12 weeks. 

Hi Clive, 

Thank you so much for your very helpful reply. I will be asking the doctor for some further testing and I have been taking supplements to see if I notice a difference. 

I only recently became aware of the Need for folate to "make use" of the b12. I've become mildly obsessed with researching it as the GP literally doesn't seem to care about symptoms. Just blood test numbers. Not one gp has ever said to me folate levels need to be optimal to utilise b12. Just as not one has said taking iron with vitamin C aids it's absorption and calcium inhibits it. And it was only reading group the replies here that I learnt that Irin is a factor in the B12 scenario too. My gp (s) have never mentioned any of this to me and yet they appear hugely frustrated when I raise it. As if to say "another one been on Google thinking they're a doctor then".

These haven't been tested, but I think i will need to the doctors to ask for specific testing. 

Went to docs the other day with the possibility of debbys plan of action , to be met with full blood count  wont tell those levels and told to just take a multi vit.Once again left with my tail between my legs.As far as i am concerned as a 56 year old male who has out lived  his father who passed at 54 , all i am trying to do is spend as much time on this planet with my grand kids by trying to head off any medical issues apart from the age old  "getting older " issues. Becoming cynical now with the attitude if i get the tap on the shoulder then i can in the knowledge i gave it my best shot as opposed to the " i should have went to the docs "  God forbid you waste the NHS time by being concerned.As you say Eleanor we have to keep plodding away at least knowing i am better off than most folk and continue to count my blessings every time i get up in the morning.But the frustration ....ugh !

Have you tried asking for your vitamin injections closer together? E.g. every 8 weeks instead of 12? I am yet to ask for this, but just wondered how the doctor took this?

I really do feel your frustration - I am 26, and I want to enjoy my life to the max, but feel held back by fatigue and the need to sleep a crazy amount. 

I am new to this forum, but have already found it so helpful knowing people understand how it feels and have been through the same struggles. I'm not sure when I will be brave enough to go to my GP again, but I hope you don't give up either!

Hi Eleanor, I appreciate these posts are old. I came across them and you seem to be the only other person I have come across of a similar age group to me suffering from these symptoms. Have you been diagnosed with Pernicious Anaemia?

So true. All NHS advice is along the lines of "if you are experiencing any of these symptoms contact your GP" and "the earlier the diagnosis the better". So you go, then you are sent away because you are not dying enough yet. You/we potentially have early symptoms of something that could advance into something more serious and/or cause lasting g/irreversible damage. But services are so overstretched they can barely deal with those that are further down that line than we are. Of course they can't say that so they have us believe we are overreacting or being paranoid verging on hypochondria; and we end up not bothering them any more because we feel bad for wasting their time. Meantime....we either get better (and they were right) or we get worse until they can't deny the issues are serious enough to warrant intervention.

I know how you feel, I don't want to go back to the docs becuase I get made to feel like a time waster.

This group has been excellent and I think my next plan of attack is to gain as much information and evidence as I can and ask for the tests I think I need. 

It is a long process but we have to keep trying!

It took me nearly six years to get the frequency of my injections of cyanocobamalin to be increased from every four weeks to now, every three weeks as my then doctor refused to vary the prescription.

The reason I am on cyano and not hydroxo is because I was started on cyano 45 years ago when diagnosed with Pernicious Anaemia.

You may need to ask if your Folate level was checked as this gets "used up" processing the B12.

I wish you well

Thanks Eleanor and Clive , I was put on injections aprox three years ago . After initial loading dose was put on three month cycle but started to hit a wall about 8 weeks in and without even working out dates new i was low.

Then GP put me on to every 8 weeks which helped , but due to revamp with surgeries in Scotland regarding catchment area / post code changes  had to find another surgery.After all documents were transferred and we were up and running the nurse  , yes nurse overuled old surgery 8 week recomendation saying it has been proved no difference bringing it forward and therefore would not lose any benefit going back up to quarterly shots.To say she was adamant is an understatement.Classic case of a lottery with regards GP , surgery and whereabouts in the country you are. Sad that having worked for forty years without a doctors sick line the entire period i now feel like a malingerer when i go to make an appointment , even to the stage where i spent / used up all my holidays ,  sick over christmas with that horrible virus not calling for appointment to check if i needed an anti biotic, in fear of that "not him again" look.God help those who go undiagnosed with more serious issues.  

What exactly is your diagnosis?  

Is it P.A. of B12 Deficiency?

Do you supplement with folic acid?

Good morning Clive  , b12 difficency was the only thing that flagged up on initial bloods. All symptoms therefore put down to that.As regrds PA  , i could tick off 90% of the symptoms . I have started some over the counter multi vits but other than that take no additional supplements . I do have moderate high blood pressure and take calcium channel blokers and pottasium (Losartan) . and althogh this has been tweaked in the past been on bp medication for over twenty years.I assume the folic acid reading would be apparent on full blood count but i did not ask.Will ask chemist if it would be worth while maybe taking additional supplements.Thanks Clive for your point.To be honest i think i may have to bite the bullet and get a private blood test done to see once and for all what my basic levels are. Thanks again Clive , have a giood day.

Pernicious Anaemia is another form of B12 Deficiency the main difference bring that with P.A. it is virtually impossible to absorb B12 via the stomach due to either Intrinsic Factor antibodies or Gastric Parietal Cell antibodies.

If you have "just" a B12 deficiency you should be able to absorb it from food or supplements,  However there are many other causes other than diet such as medications, excess alcohol, autoimmune diseases etc which can deplete levels of B12.

I am saddened to read of your catch 22 situation and hope you manage to resolve it soon.

Take care now.

I am 27 years old and I have been diagnosed with vitamin b12 and D deficiency. My b12 level is 120 and D is 9.8. I have taken 6 injections in 1 month. I also have taken D rise sachet which is 25000. I am vegetarian but I have improved my diet. I also take sun bath for half an hour. But still I feel weak after doing little or some physical activity. This makes me frustrating and losing self confidence. How much time it takes to recover from this? I did a whole body check up. CBC, thyroid, liver tests, urine tests are OK.

Being vegetarian suggests to me that whatever your "improved diet" might be you are not going to eat enough animal produce to sustain your Vitamin B12 level - hence the need for you to have had injections.

Some symptoms of Vitamin B12 and D deficiency are similar so it will be difficult to pinpoint which is causing what but I think the D will be resolved first whereas for the B12 you may well have to supplement for the rest of your life either with sublinguals (if you have no tummy troubles causing absorption problems) or three monthly injection for the rest of your life.

As to how long it will take to recover a lot will depend on how long you have been deficient and the amount of damage caused to your nervous system.  Your B12 level was very low and if you are still "struggling" after six injections you list your symptoms and ask your doctor to prescribe more for you.  The NICE and BNF guidelines say that if your have neurological symptoms you should have injections on alternate days until there is no further improvement.

I am not medically qualified but have had Pernicious Anaemia (a form of B12 deficiency) for 45 years.

I wish you well.

Scotland, based on my experience with pernicious anemia which I have been dealing with since the 1990's, if you are getting the correct amount of B-12 by injections, your sysmptoms should be gone.  Sometimes you can have long lasting nerve damage, but the other problems should be taken care of with the injections.  I get an injections every 3 weeks.  Bloodwork determines how often you need injections based on your levels.  Please find another doctor as you should not have to live with these problems and it is not good for your health,

I realize this is a very old thread, but for the benefit of searchers such as myself that may come upon this thread for it's valuable discussion, I wanted to note that a Vit D level of 9.8 is very low & very concerning. Vitamin D almost has hormone like functions in your body. A D level that low alone would make you almost a zombie. I'm shocked the doctor was not alarmed since a low-acceptable range for most labs starts around 30. I also wanted to point out, that much like B12 requires & uses up folate, Vit D requires Vit K2 to properly synthesize in the body. American diets are severely lacking K2,so if you are taking Vit D for a deficiency, orally (or in the case of a 9.8 serum level) injections, k2 supplementation is needed. Hope this helps future readers. Also, if animal product D3 is hard on your tummy or you have moral objections to animal products, Vegan D3 is just as effective & rarely causes GI upset. it is, however, about 3-4 times more expensive than standard D3.