GP's Appointment Tomorrow - advice please.

[Ajane]

Hello everyone,

So after 9 B12 loading doses in April, I had another blood test & injection last week (8 weeks after loading doses) as I developed pins & needles in hands.

B12 has gone from 115 in March to 395 last week.

Folate level has gone from 15.4 in March to 25 last week.

Ferritin was 33 in March, but don't yet know what it is now.

Today I have developed numbness in my nose & upper palate, as well as not much improvement in symptoms since diagnosis.

I have a GP appointment tomorrow to discuss symptoms & blood test results. Does anyone think it would be worth trying to get a neurology referral? Also, what are your opinions on how often my injections should be?

I am thinking of asking for a referral to a dietician to discuss supplements in conjunction with blood test results.

Many thanks for any thoughts.

[Foggyme Administrator]

Hi Ajane. First, a B12 level of 395 is very low following B12 injections - it would be usual to see a level of 1000 upwards.

It sounds like you may be under treated for your B12 deficiency - those with neurological symptoms need intensive treatment with B12 injections (following the loading doses, every other day until no further improvement).

There have been several posts about this (continued symptoms and potential under treatment) in the last few days so...

Hope you don't mind but I'm going to give you a link to one of my earlier replies...lots of information there that will help you...and your GP...to understand what's happening...strongly suspect that every other day injections might be what you need (especially because of your - still - very low B12 (too low following injections).

Here's the link:

healthunlocked.com/pasoc/po...

Good luck with your GP, let us know how you get on, and post again if you need more help or support.

Take care 👍

[Ajane in reply to Foggyme]

Thank you so much for the information & your kind wishes. I shall go tomorrow fully armed with all the info I need & hopefully get some more injections.

[Foggyme Administrator in reply to Ajane]

No problem. Be brave. More good luck 👍

[Ajane in reply to Foggyme]

Hello Foggyme. So, dr said 395 was now normal & wondered if I thought my other symptoms were caused by anxiety!!! He refused to give me more injections despite me referring him to the guidelines.

However, he has referred me to a neurologist, who will hopefully be better informed & put me on the correct treatment. Here's hoping 🙄.

[Foggyme Administrator in reply to Ajane]

Oh dear Ajane, sorry it didn't go so well.

Your GP is a noodle...yes, 395 is in the normal reference range but it's certainly not normal for somebody receiving B12 injections. And - as you know - he should be looking at your symtpoms, not the blood results. And the guidelines for treatment.

Is there another GP in the surgery you could approach?

Or you could write a formal letter as a appeal for more frequent injections and include evidence from the links I left before (more difficult for him to ignore the the evidence when it becomes part of your formal medical records). Some people have had success doing that.

If you want to go down that route, look up subacute combined degeneration of the spinal cord on the Internet (or download the fact sheet from the PAS library if you're a member), and include that as part of your evidence.

Ask him to confirm, in writing, that under treating your B12 deficency will not expose you potentially irreversible neurological damage.

(SCDSC is a neurological condition that occurs when B12 deficency is untreated - and many GP's are not aware of the neurological havoc that it can wreak on the body. I'm certainly not suggesting you have this - it's just a way of sharpening your GP's thinking a tadge - and others have had success by taking this approach. If it's something you want to do 😀.

It's good news that he's referred you to a neurologist since peripheral neuropathy can have many underlying causes...so at least you'll have the reassurance of being throughly investigated.

Some neurologists are knowledgable about B12 deficency, some are not. Unfortunately. So will be keeping my fingers crossed that you get one of the former.

Good luck Ajane...again, let us know how you get on 👍

[Ajane in reply to Foggyme]

Hello again.

Neurologist was very thorough & obviously knew what he was talking about 😊. Have had blood tests for MMA & homocysteine. Am booked in for spine MRI & electrical testing to determine nerve damage & brain scan to rule out other causes. Also, another 6 loading doses over next 2 weeks in the meantime. I'm very happy to have been taken seriously. Phew 😅.

Thanks again for your support.

[Foggyme Administrator in reply to Ajane]

That's excellent news Ajane 💡🙃😄.

Post again and let us know how it goes.

Hope you begin to feel better very soon.

👍

[shortytlc]

Good luck with the neurological app hopefully you will get the treatment you need. it's always a struggle think GPs should all go on a training day