Injections or supplements?

[Ktululady]

Every day I have been taking at least 5 mg of sub-lingual b12 to feel okay. I have just had 5 loading doses (1 mg every other day) and although I didn't feel terrible, it wasn't really enough, all my symptoms were slightly worse.

As I have neurological problems I was hoping she would do what the guidelines suggest and keep giving me the injections every other day until there is no improvement and I could supplement at the same time. I have shown her the guidelines which is why she agreed to start the loading doses and I have to go back today and tell her how I felt. She might say that there's not much point if I didn't feel a lot better and the guidelines only say to give 1 mg every other day so I don't think she will give me more than that.

The numbness in my right side keeps getting worse and I think the only solution will be to take even larger amounts of B12. I'm slightly nervous about taking more but I am worried about it getting worse. Does anyone else take more than 5 mg? Is it a bad idea? If I don't feel a lot better having the injections is there any point or should I just supplement myself?

I'm just not sure what to do for the best .

[Sleepybunny]

"all my symptoms were slightly worse"

Some people experience a worsening in symptoms when they start injections.

I think this might be due to nerves "waking up".

The PAS (Pernicious Anaemia society) might be able to tell you more about this if you give them a ring. If you leave a message someone will get back to you within a few days.

pernicious-anaemia-society....

01656 769467

Office open between 8am and 2pm every day except Sundays.

"As I have neurological problems I was hoping she would do what the guidelines suggest and keep giving me the injections every other day "

Has your GP seen the "BCSH Cobalamin and Folate Guidelines" ? I copied the whole document and gave a copy to my GP. The info is also in the BNF (British National Formulary) Chapter 9 Section 1.2

Your Gp will have access to the BNF, probably has a copy of it on bookshelf. Hopefully a kind Gp would let you see the info.

I had to resort to self treatment because I could not get treatment from NHS. It took several weeks before I noticed any difference. I seem to need a lot of B12 to maintain any improvement. As soon as I stop , symptoms which have gone start to reappear.

I think that a patients reaction to B12 is very individual.

Is your GP monitoring your potassium levels? Some people experience a drop in potassium levels(hypokalaemia) when they start B12 injections.

b12deficiency.info/what-to-...

The BCSH Cobalamin and Folate Guidelines mention that potassium replacement may be needed.

patient.info/doctor/hypokal...

Have you had recent tests for ferritin, folate and FBC (Full Blood Count)?

[Daisya31 in reply to Sleepybunny]

Just so you know, you can access the bnf in any pharmacy or library 😀

[fbirder]

There is no problem with taking more than 5mg per day (apart from the expense).

Stay with the injections. As SleepyBunny says, it can take quite a while before things improve and they can sometimes get a bit worse in the interim.

[engels]

Taking 5mg of (presumably methylcobalamin?) sublinguals isn't going to do any harm except, as fbirder says, it will get a bit expensive. You should also be aware that methyl sublinguals don't work for everyone and for me they did absolutely nothing at all. At the time I was on 3 monthly hydroxo injections and was trying to find something to prevent me from descending into the pit of tiredness and depression between each injection. I had read how effective methyl sublinguals were supposed to be but, to my great disappointment, found that taking even 10mg per day had no effect and was a complete waste of time and money.

[Ktululady]

Thanks for all your replies. My doctor is giving me another five injections, one every three days, to see if there is any improvement, and she is referring me to the hematologist and neurologist.

[Sleepybunny]

That's good news that you have a referral to a haematologist and a neurologist. Hopefully they will have a good knowledge of B12 deficiency.

However don't be shocked if they don't. If ever I am referred to an NHS haematologist ( ill for well over 10 years and have never seen an NHS haemo) I will go armed with copies of

1) BCSH Cobalamin and Folate Guidelines

2) UK NEQAS B12 Alert

3)BMJ article on B12 Deficiency

4) Martyn Hooper's latest book

5) Anything else I think is useful

If I can find someone kind and understanding of b12 issues and willing to speak up for me, I'll take them as well.

I saw several neuros and only one had reasonable knowledge of B12. I also saw a haematologist privately and was not impressed.

I think that sometimes other medics like podiatrists ( might spot foot neuropathy),

dentists (might spot sore tongue, mouth ulcers, bleeding gums), opticians ( might spot problems with optic nerve) can be helpful in identifying b12 deficiency.

I keep records of all my blood test results. Surgeries usually charge for copies. I keep track of results over a period of years. I suspect that some GPs may forget to look at trends in blood results. I keep an eye particularly on MCV and MCH, folate, ferritin and B12 results. I can see that taking b12 has had a positive effect on my MCV results.

When I see a new GP/consultant I give them a summary of blood results and a summary of my symptoms.

Local CCGs (Clinical Commisioning groups) should be able to tell patients if the BCSH Cobalamin guidelines are being followed in their area. Not sure what the CCG equivalent is in Wales, Scotland and NI.

nhs.uk/servicedirectories/p...

Good luck

[Ktululady in reply to Sleepybunny]

Thank you, I will make sure I take all things you mentioned.

[deniseinmilden]

I self inject daily plus use loads of sublinguals and take supporting supplements of 1800 mcg folic acid, a multivitamin and mineral supplement and potassium. As the others have said, cost is the only issue for me but I can't work without everything I take so I have no option!

Ask to have your folate and other levels checked - I don't get the benefit from the B12 unless my B9 is high too.

Good luck!