Dropping levels

[MrsBRE]

Hi all. Finished my loading dose four weeks ago, I’ve started to get unusual sensation on my tongue and in my mouth again. I have a blood test in four weeks to check my levels. Could this be a sign of a continuing problem?

[Nackapan]

If b12 deficient non dietary or PA you need maintenance b12 injections for life. Not retested .

Your levels are supposed to be high on injections and kept there.

Go by symptoms

Sounds as though you may need more not a blood test to prove b12 levels and then refused them.

If dietary a booster of injections can be given then oral b12 tablets can be absorbed.

[fbirder]

Why is your doctor wasting NHS time and money by testing your levels?

Ask them to treat symptoms, not numbers.

[MrsBRE in reply to fbirder]

I don’t know. I’m not a doctor.

[JanD236 in reply to MrsBRE]

Once you’ve had B12 injections your blood serum levels will be high and will remain so for many months. It’s therefore a bit of a pointless exercise to check your B12 levels just a couple of months after loading doses. Indeed guidelines say that once injections have started further testing of levels is not necessary.

For many nutritional blood tests eg vitamin D or iron, it would be correct to supplement until subsequent blood tests show that your levels are within the normal range. However, this is not the case for vitamin B12 where it seems that deficiency symptoms return even when blood levels are high. This is why fbirder has suggested asking your doctor to treat your symptoms, rather than taking a blood test.

Doctors unfortunately get little or no training on vitamins and seem to be unaware of this fact.

Guidelines say that your doctor should give you an injection every 2 or 3 months after loading doses but as your symptoms have returned after only 4 weeks I would be asking your doctor if he would be prepared to let you gave monthly injections. My GP allows this but from what I read on this forum, many GPs will not (and for this reason many take matters into their own hands and self inject their own B12 at whatever frequency is needed to keep symptoms at bay).

Best try with your doctor first but if no luck you will find plenty of help on this forum for sourcing your own B12 from pharmacies in Germany where it is legal to buy B12 over the counter.

[MrsBRE in reply to JanD236]

Thank you, that was was a very helpful explanation. I have been advised I will have the injection every three months for a year. My iron level was low too, so that’s probably the reason for the blood test.

[Emmers5 in reply to MrsBRE]

You will find very knowledgeable people on this site, so I encourage you to read what they have to say. I am only able to stay well on weekly injections. Everyone is different. I will say that when I followed up with a neurologist, he ordered a b12 test. I flipped out, afraid that he would see high levels and cut my injections, but he explained that he was only interested in the test to make sure my b12 level wasn't low even with injections.

[Hidden]

Yes, I had to have bi-weekly injections in the beginning after my loading doses as my levels were dropping too low on monthly and symptoms kept returning. I hope you get it sorted ❤️

[kjc22 in reply to Hidden]

Same for me in the US! My level did not increase like most...it only got to 250 and symptoms never seemed any better (except my mouth sores stopped). They agreed to another round of loading doses before rechecking again but my doctor agrees I will have life long injections. he just wants to see my levels sustain well over 500 for healing....

[Hidden in reply to kjc22]

I remember going back to Doc after loading doses and then onto monthly injections asking if it was normal to feel like I wanted to lie down and never get up even on injections. She reluctantly did blood test again and started suggesting maybe it was depression. She was very surprised when results came back and had dropped low again and I remember her saying "It IS the B12" It's good that you seem to have an understanding Doctor. Hope all your symptoms resolve soon 🙂

[Akashrajput]

What are the unusual sensations because even I'm going through alot of oral changes since the day I started my treatment will like to know your problems n relate