10 weeks since loading dose and feeling desperate...

[wishart85]

Hi there,

So around mid March I was told I had a B12 deficiency [via the surgery's receptionist - was never discussed with a GP] and I had the 6 loading doses. The last injection I had around 5th April [10ish weeks ago?]. I started feeling better a week or so after that and I've felt relatively okay since [more energetic, less brain fog, better balance etc.]

However, for almost a week now I have been feeling "off" it started with being a bit more tired, headaches and some lightheadedness but it's getting worse. I'm getting out of breath just showering. I can't really focus. Having a conversation with someone is difficult and exhausting because I can barely concentrate. The headaches and lightheadedness are pretty much constant. My breathing feels more laboured than it should even when I'm just lying on my bed and I occasionally have what I assume are palpitations. I kinda don't feel like I'm quite here...

Apologies for rambling! My question is do you think this is because my b12 levels have dropped again? I've read lots of posts from people saying more regular injections are needed but I'm pretty new to this and wouldn't mind some advice

I'm booked in for a blood test next week [they arranged this back in March] so I'm guessing I just have to ride this out for a couple weeks until they test my b12 levels again? Just seems like such a long time to wait, especially as I'm predisposed to depression and destructive behaviours/suicidal thoughts.

Anyway, thanks for reading and as I say any advice/ideas/kind words would be very much appreciated

[clivealive Forum Support]

Hi wishart85

Sadly it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are have had injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It may also be the case that you will need more frequent injections and if you have neurological symptoms the N.I.C.E. guidelines say that maintenance injections can be every eight weeks. You may need to point this out to your doctor.

Also, if you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

Do you have a diagnosis of P.A. or Vitamin B12 Deficiency?

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[wishart85 in reply to clivealive]

Thank you for your reply I don't know if I have an official diagnosis as a doctor hasn't actually discussed any of this with me. I know it's something I should have made an appointment for and enquired about but I couldn't think straight at the time and the nurses just seemed happy to inject me regardless so I just went along with it! More recently I've been battling with the GP about getting help for my mental health so the whole B12 thing got ignored but I'm starting to think that the two are linked. Like I say I was mostly feeling better but it's this last week that I feel like it's hit me again - or something has at least!

[clivealive Forum Support in reply to wishart85]

It would be good to get a definite diagnosis,

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Can you see yourself in any of the above people?

If you can find a cause and it isn't P.A. you may be able remedy the problem bay a change in lifestyle/diet etc.

[NovicePA in reply to wishart85]

I understand they can be linked. Not always of course but it may well be worth raising with Gp too

[NovicePA]

Go on the PA Society website and ensure your doc has the latest guidelines on treatment. You shouldn’t be tested for B12 deficiency once you have started injections (can’t remember why) but you should get your iron and folate checked. I have read that they should be in the upper end of their respective ranges for us to feel our best.

[Cherylclaire Forum Support in reply to NovicePA]

Hi NovicePA , the reason is that you would only be measuring the amount of B12 that has reached your bloodstream after you have been injected, which would be high, not whether it is active or inactive and not whether it has reached cell level either -

so pointless. I was told that ferritin ideally should be around 100 ug/L (never yet managed it myself but trying), and folate in top 1/3 of range (also not there yet!), although this advice was not from a GP.

Hi wishart85 , a lot of people get worse before they get better, as clivealive pointed out. I don't know what your mental health issues are, or whether they are B12 related, but there is a possibility. Certainly mood-swings, irritability, impatience, memory problems and cognitive issues, confusion, wanting solitude, distraction, sensory confusion/overload and "brain-fog" are problems that many of us have experienced.

Take it easy, novice, and try doing one thing only, slowly, from start to finish with no time limits and no distractions (music/TV/people in background etc). Be kind to yourself.

A lot of knowledgeable and helpful people here, so don't be afraid to ask. They certainly helped me.

Keeping a record of symptoms or a diary will help you to see what is improving even if it is very gradual. Helps with morale and with memory, too: when a specialist asks "when did that start?", you can look it up. Good luck.

[Allen381]

Guess you need another set of loading doses. Most people on this site will tell you folate and b12 and iron levels need to be kept up as they all work together.

I felt pretty good like you after loading injections and started to feel bad again so I bought my own B12 from Germany and inject weekly and feel a lot better for it.

It is true you can feel worse before getting better so stick with the programme. Just be sure to tell your GP how crap you feel.

All the best