Worried

[DH89]

Hi all.

I currently receive injections from the doctor every 8 weeks, which after reading on here I'm very lucky to get in the UK.. it would seem! However my symptoms start returning after 5/6 weeks.

I went to the doctor to discuss the possibility of increasing the frequency and she said she would have to do a blood test first. Now I'm worried that that could force my injections back up to 12 weekly as it was a previous GP surgery that set them at 8 weeks.

I first started having injections when I was 20/21 6 years ago and they were stopped after about a year once they'd done a blood test. It was the worst two years of my life after that I was so unwell with all symptoms you could think of and they tried to tell me it was in fact depression. When my injections were finally restarted 2/3 years ago, the doctor apologised for them ever being stopped. Nightmare!! I'm worried that the same thing will happen again now, even if I go in with all the guidelines and evidence.

I'm only 26 and feel about 86 most of the time!

Can anyone offer me any advice? I always seem to lose all confidence when I get in my appointment!

Also just for reference, I take Metformin for PCOS which obviously affects my b12 levels.

[Lisahelen]

Hi, you have probably read enough past posts to realise that any blood test will be skewed once any b12 injections have begun. So that is in your favour along with the fact that when they were stopped before you suffered badly. That will be on your notes so if you can remember the approximate time that that all happened you can ask that you have a physical copy for yourself to have for reference and to show to the gp.

Unfortunately gps seem to be a law unto themselves, some treat by symptom but as you are aware many by numbers, until you have had your appointment its a bit of an unknown.

The last thing you want naturally, is for them to decrease the amount you get, could you continue with the 8 weekly and top up yourself by other means just to keep you going?

[DH89 in reply to Lisahelen]

Thanks, that's a good idea. I'll do that!

My blood test should hopefully be in the morning, just before my injection so then its just a waiting game I suppose.

[fbirder in reply to DH89]

It doesn't really matter when the blood test is in relation to injection timing. It's almost certainly not going to show a low reading and will probably turn out to be high.

Look at my summary document - frankhollis.com/temp/Summar... - in the section where it says 'Further testing of serum B112'. You could print out the BMJ document, highlight the passage that says

"Cobalamin and Holotranscobalamin levels are not helpful because they increase with vitamin B12

influx regardless of the effectiveness of treatment, and retesting is not usually required."

and give it to your doctor.

[DH89 in reply to fbirder]

Thank you! I'll print it out and go armed with the information.

[PinkBodicea]

Hello there

Don't give up hope. Don't lose confidence. Sounds like you know your body well. I think we all learn.

Since being part of this forum, I have been buying methylcobalarmin from Germany. I need it every third day. Then I am fine - I run about 20 miles a week and have a normal life if I eat well....

Of course a blood test won't work. How about suggesting that you record a "tiredness" diary to demonstrate how your symptoms work.

If you can afford it, perhaps buy a supply of methylcobalarmin privately until the NHS catches up with what you know?

We are the one in a thousand so it's not surprising that busy NHS doctors get confused by us. State your case and be strong.

At least our disease can be managed.

Sending luck and courage

[DH89 in reply to PinkBodicea]

I'm a bit nervous about self injecting. Cost wouldn't be an issue but it might be the only thing left to do!

I'll suggest the diary idea and see how that goes. Thank you for your help!

[Gambit62 Administrator]

It is possible that your levels may come back low - some people remove B12 from their systems a lot quicker than others and that could be the reason why your symptoms return early. However, the probability is that the levels will still be high - this should not be used as a reason to withdrawn your maintenance shots. It sounds as if you had neurological symptoms as a result of the withdrawl of shots for 2 years - which is probably why you were put on 8 weekly as the BCSH guidelines are maintenance shots every 8 weeks if there are neurological symptoms. It would be wrong for the frequency to be reduced to 12 weekly on that basis. The papers listed by fbirder give you the BCSH guidelines if you need to refer your GP back to those.

Unfortunately, B12 injections are only licensed for 8 weekly in the UK which makes it quite difficult to get GPs to treat on the basis of symptoms and provide B12 more frequently than that - hence so many of us going down the route of treating ourselves.

Hope things go well and you manage to get through to GP

[DH89 in reply to Gambit62]

Ah ok that makes sense.. I didn't know it was only licensed for every 8 weeks!

Thanks.. I'll update once I know what's going to happen.

[Gb57]

I know this may seem wrong, but for me it's the only way to protect my health. What I do is make my own appt with the nurse every 4weeks. I also supplement with injections two to three times a week. No one is listening to us. I hope you feel better soon

[BethattheBeach]

Could you take someone with you to help advocate for you? This disease erodes confidence, ties up the tongue and stills the brain... not particularly useful when you need to be sharp to argue your case. Armed with a witness and a list of the symptoms you currently suffer should help your case. Good luck.

[DH89]

So the Doctor called me on Wednesday and no surprise said my b12 was 1500 and something. Sorry for not being more specific, my memory is inevitably horrendous!

She also said my folate level was on the lower end of normal at 4.2 and prescribed me some folic acid to take everyday for a month.

Dr said to take these and see if my symptoms improve as this may be why I am experiencing pins and needles, brain fog, insomnia, low energy etc. I told her I'd make a diary of the symptoms as suggested on here.

I did discuss the inaccuracy of the b12 test and she said to try this first and then they will consult a haemotologist.

It seems like every time they do a blood test it comes back with something different that is deficient or low and I'm given a supplement. Last month it was Vitamin D. I'm going round in circles.

Where do I go from here?