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JoJo32 profile image
7 Replies

Good Morning all,

Hope everyone is well or as well as you can be.

A few weeks ago after I had some bloods done I got a text to say my B12 is low and to collect a prescription. I did this and then went to doctors this week. I also found out my vitamin d is also low. So I'm taking both.

I need to wait for about three months to go back and get bloods taken again. I'm so exhausted!!!! As I said to doctor this doesn't feel like fibromyalgia this tiredness is different. I'm worried now if it keeps up that it will start a flare.

Any hints or tips?

Thanks for listening.

Jo xx

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JoJo32
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Creativeness1 profile image
Creativeness1

Hi JoJo32 i hope things improve for you. I hope you feel better soon it is awful when you are feeling drained.

I would say get plenty of rest and check out the mother site for additional information.

fmauk.org

I hope you feel better soon

Sending hugs and best wishes my friend

JoJo32 profile image
JoJo32 in reply toCreativeness1

Hi

Than you for replying back to me.

I will have a look on the website as well.

Tc

Jo xx

Foggyme profile image
Foggyme

Hi Jojo32. Sorry to hear about your low B12. B12 deficiency can make you feel really unwell.

Just wondering if your GP has attempted to find out the cause of your B12 deficiency. If you have an absorption problem (for instance due to IBS, Crohn's, coeliac's, certain medications or gastric/Intestinal surgery... and other things to) then you will not be able to absorb B12 from tablets. In addition, the 50 µg cyanocobalamin tablets licensed for prescription in the UK are only advised for the treatment of B12 deficiency caused by poor dietary intake (usually only experienced by those who have been vegan for several years).

You may also have other symptoms associated with vitamin B12 deficieny without realising it (i.e. mind fog, pins needles, loss of balance, gastric issues, to name but a few). If you have any neurological symptoms (i.e. pins and needle, loss of balance, tinnitus, struggling to find the right word for something) it's important that you are treated immediately with B12 injections. Sadly, a lot of GPs don't know this.

I'm also wondering if your GP checked your folate levels. B12 and folate work together so if your folate levels are deficient or low your body cannot use B12 properly.

If you need more information about B12 deficiency, you can find this on the PAS community forum. There are some PAS pinned posts to the right of the page when you log on (Or at the bottom if using a mobile phone). In the second one down you'll find a list of symptoms for B12 deficiency...might be a good idea to check in particular to see if you have any neurological symptoms. (There's also lots of other information about B12 deficiency and about how your GP should be treating you).

If you do have neurological symptoms, it would be a good idea to go back to your GP and ask him to treat you media Clee with the neurological regime of injections for B12 deficiency. That is, six times loading doses on every other day and then alternate day injections until there is no further improvement. Sadly, many GPs do not know about this regime of treatment for those with neurological symptoms.

In addition, if you are not a vegan your GP should investigate you for absorption problems and also consider B12 injections (since you will not absorb B12 from the tablets).

If this applies to you and your GP is reluctant (or refuses) to treat you and you want more help, post on the PAS forum and we will be able to advise further.

Good luck. Hope you begin to feel better very soon 👍

JoJo32 profile image
JoJo32 in reply toFoggyme

Hi

I've been onto the pas site as well.

To be honest the doctors haven't even asked me if I'm vegan or not. I'm on 1000 mj (it's not mj but I can't find the symbol!!) Daily for B12. I don't eat red meat but eat plenty or dairy food and other meat. At times I do tend to suffer with IBS.

I'm just very frustrated with it all. Although I'm forcing myself to keep up with my excersise with aqua fit and slow walking.

The doctor did say that if there's any changes in my eye sight I need go back.

Thank you for your reply.

Tc

Jo xx

Foggyme profile image
Foggyme in reply toJoJo32

Hi Jo. Ah ha...sounds like you've been prescribed 1000mg Cyanocobalamin...and keeping an eye on your eyes is to do with the potential (albeit very very rare) for cyanocobalamin to cause eye problems.

Also - think you may be in the USA? Believe oral tablets are the first line treatment there. However (and in particular because you have IBS) oral tablets are not always effective for those with absorption problems (which you may have because of the IBS). And oral therapy does not work for everyone (lots of American forum members in the PAS who had to switch to,injections instead - but we don't hear from the ones who got on okay with the tablets 🙃.

So...if symptoms don't resolve, get worse, or you develop neurological symptoms, well worth going back to your doctor to discuss the possibility of having B12 injections instead 😀.

There have also been stories of some UK GP's prescribing 1000mg tablets recently - nobody knows why or how since these are not licensed for prescription in the UK - nor is this treatment recommended in any of the current guidelines. So, if in the UK, be aware that you are not being treated in accordance with any of the guidelines. And if you do have neurological symptoms (again, according to UK guidelines) you should be treated with B12 injections.

I'm not surprised your feeling frustrated with it all - and probably quite ill too - B12 deficiency can make you feel very ill indeed.

Hope you begin to feel better PDQ...and post on the PAS forum if you need any more help or advice.

Good luck 👍

JoJo32 profile image
JoJo32

Hi Foggyme,

Thank you for the information.

I was born and grew up in N.Ireland but now live in England. I get the tablets as I previously refused the injection but again the doctors knew I was low on B12 but never ever followed up as it was three years since I had bloods taken.

I think if I remember correctly I was going through a flare up and in a lot of pain and it was too much thinking about the injection. Maybe it's time for a rethink!!!:)

I will ensure that I keep a notice on my symptoms.

I've been on the PAS forum but I felt a bit insecure on there.

Thanks

Jo xx

TheAuthor profile image
TheAuthor

Hi JoJo32

I am so genuinely sorry to read this and the Harvard Health Publications - Harvard Medical School says:

*A serious vitamin B12 deficiency can be corrected two ways: weekly shots of vitamin B12 or daily high-dose B12 pills. A mild B12 deficiency can be corrected with a standard multivitamin.

In many people, a vitamin B12 deficiency can be prevented. If you are a strict vegetarian or vegan, it’s important to eat breads, cereals, or other grains that have been fortified with vitamin B12, or take a daily supplement. A standard multivitamin delivers 6 micrograms, more than enough to cover the average body’s daily need.

If you are over age 50, the Institute of Medicine recommends that you get extra B12 from a supplement, since you may not be able to absorb enough of the vitamin through foods. A standard multivitamin should do the trick.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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