New diagnosis and wanting to understand

[Reallytiredlol]

Hi all, So I went to my dr yesterday to collect my BT results for possible celiac or crohns disease because I have been having gut issues. Turns out I am severely b12 deficient (outside the ranges of even the low end) and my haemoglobin is also low (anemic), she told me she thinks I have a malabsorption issue in my gut and some food intolerance. Then said I need b12 injections because of my BT results & she does not think my gut will absorb enough of the b12 in tablet form, so it's 1 every every month for 3 months then r/v my bloods again.

So after a bit of research somethings are making sense, extreme fatigue, brain fog, roller coaster of emotions and even the numb feeling I've been getting in my jaw (that i put down to a side effect of a muscle injury in my neck that has now healed) that I didn't bother to mention cause I didn't think it was important.

Anyway I have some questions, i know i should ask my Dr but when you go in for one thing then come out with something different, the questions tend to come later 🤷‍♀️.

From what I have read on here, a lot of people get loading doses of b12 injections for a couple of weeks and then reduce to one every month or so. So has anyone done a simlar treatment plan to myself and gotten a good result? Will it be enough?

I know everyone is different, but I will ask anyway... have the injections helped to reduce fatigue and if so how long till you noticed? And numbness, does that reduce?

Does anyone else have gut issues too? I often get bouts of scurvy despite fruit being a huge part of my diet, Did anyone notice if they had trouble absorbing vitC also? If I have a malabsorption issue then is it most likely these injections will be for life?

Thanks for any help x

[Gambit62 Administrator]

PA - the most common cause of B12 deficiency is an auto-immune gastritis and tends to come with a raft of gastric problems particularly associated with low stomach acidity.

It would help to know where you are based as treatment protocols vary from country to country - but with a B12 deficiency as severe as the one you are reporting I would really have expected a more aggressive loading regime

[Reallytiredlol in reply to Gambit62]

Hello, thank you for your reply.

I am in Australia.

Until I did a bit of searching about vitB12 deficiency, anaemia and treatment. I had no idea that a deficiency in B12 could be such an issue.

Just when I was starting to ask myself questions I found this group.

[sbadd in reply to Reallytiredlol]

Im also in Australia Perth

Both myself and my daughter were given 6 loading doses over 2 weeks, then 1 every 3 months do you know what your reading was?

Mine was 148?

[Gambit62 Administrator in reply to sbadd]

sbadd Reallytiredlol - in Australia injectable B12 should be available as an over the counter medication though you may have to do some homework to persuade the pharmacist of that. That should give you a bit more freedom to treat yourselves according to symptoms.

Good idea to keep a diary of B12 in relation to injections so you know when you need a top up

Reallytiredlol, would expect your GP to be following the same protocol as in the UK if you are on australia - though I don't actually know what the local regulations are

You can find details of the UK standards here

onlinelibrary.wiley.com/doi...

Don't know if they are around at the moment but possible that Martin_12 may be able to help with more specifics on standards in Australia

[clivealive Forum Support]

Hi Reallytiredlol are you in the U.K?

Assuming that you are you could go back to your doctor and ask him to start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

There are many reasons why you have a Vitamin B12 deficiency and yours may well be malabsorption as is evidenced by your comment about Vitamin C and iron.

In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum..

Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.

Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia". In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

Whether you actually have P.A. is irrelevant at this stage as the treatment for that and B12 Deficiency is virtually the same. Hopefully your doctor will establish the cause of yours.

The benefit of having B12 injected - especially at the beginning of treatment - i.e. via the loading doses - is to flood the bloodstream with so much that some of it will get into the cells. With tablets, sprays etc only a very tiny percentage will get through.

Do you know whether your Folate level was tested?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are below the bottom of the range.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

Goodnight from the U.K.

[Reallytiredlol in reply to clivealive]

Hello, thank you for your reply, I live in Australia, the link you posted only works in the U.K but that's okay because you've given me lots of information nd I appreciate that 😊

[clivealive Forum Support in reply to Reallytiredlol]

I did suspect that you were not in the U,K, however although treatment protocols nay be different "down under" here are the guidelines for doctors over here (the link you could not open)

"How should I treat a person with vitamin B12 deficiency anaemia?

For people with neurological involvement

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

For people with no neurological involvement

Initially administer hydroxocobalamin 1 mg intramuscularly three times a week for 2 weeks.

The maintenance dose depends on whether the deficiency is diet related or not. For people with B12 deficiency that is:

Not thought to be diet related — administer hydroxocobalamin 1 mg intramuscularly every 2–3 months for life.

Thought to be diet related — advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection.

In vegans, treatment may need to be life-long, whereas in other people with dietary deficiency replacement treatment can be stopped once the vitamin B12 levels have been corrected and the diet has improved.

Give dietary advice about foods that are a good source of vitamin B12 — good sources of vitamin B12 include:

Eggs.

Foods which have been fortified with vitamin B12 (for example some soy products, and some breakfast cereals and breads) are good alternative sources to meat, eggs, and dairy products.

Meat.

Milk and other dairy products.

Salmon and cod."

I hope this helps

[Cb1963]

Are you in the UK? I had an initial course every other week for six weeks, and then went onto a 3 monthly cycle, however at the beginning I was feeling slightly better, but now after around 6 weeks I feel I'm already needing a top up, and have ended up with the classic ringing in my ears constantly, and my tongue has started to tingle /stinging, I've had numerous problems with my stomach I had ulcerative colitis when I was in my early teens and into my mid twenties, and other stomach problems, it's a very sneaky condition I have constant pins and needles in my legs and arms, and I'm not sure if I'll ever get a normal feeling back, my condition wasn't picked up quickly enough I was initially diagnosed with neuropathy, it was only after joining this forum that I gathered some vital information, even having to take omeprazole for the rest of my life is a factor, and unfortunately I suffer with a skin condition which means I've had quite a few general anaesthetics, even the nitrous oxide gas can cause a lot of problems, I never realised how many problems vitamin B12 deficiency would cause, the list is endless, muscles spasms, eye twitching, a deep internal body tremor, headaches, even bowel habits, tiredness, lack of energy and your general wellbeing all are possibly involved with this condition, we are all different and we react to medication differently, but please keep an eye out for new symptoms if you haven't had them before, and don't give up if you feel like the injections aren't working, it may take a couple of months to notice a difference, but like I said I'm now chasing my doctor up for a new batch of blood tests as I feel I'm not gaining enough from a 3 monthly cycle, sorry for the long post but the more information you have the more you'll understand this condition, if you need any other help and want to mention any other symptoms you might have I'll try to get back to you, but there are others on here who can deal with the figures regarding the bloods, and hopefully they will give you the right data, phew I've got sore thumbs typing this lot out lol, thanks

[Reallytiredlol in reply to Cb1963]

Thank you for sharing your story I really do appreciate it. By reading your story it helps me to identify things to keep an eye out for that may be linked to being deficient, that I otherwise may have just put down to other things.

Thank you 😊

[rosyG in reply to Reallytiredlol]

I would definitely ask for loading injections. I’ve had no problems when my injections have taken me way above the top of the range

[Cherylclaire Forum Support]

I did have fatigue: slept 14 hours, woke up air-grabbing (don't yawn properly any more) and usually had to have a nap in the afternoon too ! Made myself do 1 thing per day- nothing exciting: go to the library, go to the local shops... a supermarket shop would cost me 2-3 hours' nap directly after. Naturally unable to work at this time.

Now back at work 2 days per week, anyway, and getting out and about a bit more. Sleep around 9-10 hours, no naps (yay!) but still air-grabbing, which is a stubborn symptom for me. I want more, but it's taking me a long time. Mostly, still hopeful, but get disheartened sometimes. My body seems to reject anything and everything I eat or drink.

Harder without a PA diagnosis, I think. No hook to hang my hat on.