First b12 injection questions and one other question re-bloods

[leeherron79]

Hi there - after being told my b12 was 108 - second test confirmed again at 118 (altho docs said this second result was just into normal...!) they started me on injections today

What I'm wondering if I'm imagining a few things tonight and wondering if anyone else experienced this

Most of the day my hands have been tingling - now one of my symptoms is this but not as bad as this

And secondly I've been running for a pee even more than normal...

Also secondly I was wondering - doctor told me I'm not anemic and my iron(ferritin) levels are ok - so does this mean I do or don't have p/anemia ? My doctor is on hols for 3 weeks and don't want to go to another as don't trust them the same as him..

Many thanks

[Gambit62 Administrator]

PA is a misnomer - stemming from a history in which the effects of B12 deficiency were first observed as a type of anaemia.

PA is actually an auto-immune response that leads to a B12 deficiency so the symptoms of PA are the symptoms of the B12 deficiency it causes.

Although a B12 deficiency will lead to anaemia, anaemia isn't always present - in about 30% of cases (I think that is right) neurological symptoms precede anaemia. I had 40+ years of neuropsychiatric symptoms and 25+ of neurological symptoms before diagnosis and I've never to my knowledge shown as having anaemia.

The general form of anaemia associated with B12 deficiency is macrocytosis - in which the cells are slightly enlarged and a little rounder which makes them much less efficient at picking up oxygen from the lungs and delivering it to cells where it is needed.

B12 is also used by the processes that maintain the protective sheath around nerve cells, some processes in the brain and the processes that release energy in cells.

It isn't quite clear why B12 deficiency is associated with incontinence - but one possibility is that it is the effects on nerve responses that are used in the autonomic systems - which control those things that we do consciously and semi-consciously - like breathing and knowing when we need to go to the loo. It is possible that the B12 is stimulating the nerve cells so signals that were much weaker before are now coming through more strongly - so the threshold that your brain had set for telling you that your bladder was full when the signals were weaker is now a bit too low so you are being prompted to go more frequently.

The pins and needles may be similar.

Things do usually settle down as your brain adjusts.

[Gambit62 Administrator in reply to Gambit62]

You might find it useful to go through the checklist of symptoms in the pinned posts (a link) and tick off all the apply so you can monitor progress as you go through your loading shots

[leeherron79 in reply to Gambit62]

Thanks yes I've been through the list of symptoms and have a few (namely fatigue, hair loss, tingling hands, strange noise in my ears, breathless, swollen tongue, jumpy restless legs)

But all of them could be linked to my lupus too which makes it more complicated..

Also the running to the toilet .. It's not so much about going I am actually needing . It's like anything and everything goes straight through me - think I maybe need that checked separately..

For example today all I had was one glass of coke and cup of tea by 3pm and went 6 times - each time needing badly and a lot..

[Gambit62 Administrator in reply to leeherron79]

sounds like you may have had some water retention going on - not aware of that in relation to B12. Hope it calms down soon.

[clivealive Forum Support]

It is not uncommon leeherron79 for symptoms to appear to get worse before they get better as Gambit62 explained and you may even get some "new" ones as the B12 starts to repair the damage to your nervous system.

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

Do you know what your Folate level is and how often and frequent are you B12 injections?

Please try not worry or stress too much as this just uses up B12 needlessly.

[leeherron79 in reply to clivealive]

No all I have is I went with one symptom getting worse they tested host of things one of which was this and then they decided to do injections

One every two days for two weeks then review they said

As I say doctor not back for 3 weeks so can't get results properly. Just said iron was ok and thyroid ok

Thanks

[Marz in reply to leeherron79]

Please obtain copies of the test results that were declared OK. You are entitled to them legally. You may find some surprises.

It is quite common to have auto-immune thyroiditis - Hashimotos - when you have other auto-immune conditions. I have Crohns and Hashimotos with a B12 issue too. So unless the anti-bodies were tested then it is impossible to tell.

GP's often only test the TSH which tells you a small part of the thyroid story. You will also need the FT4 and FT3 tested as well as the anti-bodies - Anti-TPO and Anti-Tg. It is so often missed - rather like the B12 situation. The TSH is a poor indicator of the situation and is a Pituitary hormone. I have seen so many test results - done here in Crete where we keep our own records - and yes the TSH is in range as is the FT4 - but the most ACTIVE thyroid hormone - FT3 is on the floor. So conversion is an issue and B12 is one of the things required to create good Thyroid conversion - along with GOOD levels of Ferritin and VitD. T3 is needed in every one of the trillions and trillions of cells in the body - so when low things begin to go wrong.

Ferritin needs to be around 80/90 - depending on the range. Folate needs to be halfway in the range. VitD around 100.

I am not a medic - just a Hashi's girl with a B12 issue. Click onto my name above to read about my journey

Hope things go well for you ....

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you may need to check your Magnesium RBC.