Symptoms back with a vengance

[Quigley2005]

Been to see doc today. It's 4 days since loading dose has finished and my dizziness and blurred vision are back. Doc says unlikely due to b12 deficiency as my levels will be very high right now. What if I can't convert the hydroxy to active b12? How will I know this? Thanks guys

[Nackapan]

I got alot worse before better. I got support on here. Clive alive said the repair work being done. I'm 5 weeks post loading doses. I went out into the garden today and watched a little TV. A major breakthrough. Also managed to bring forward my first maintenance B12 injection by a week.

The Cawthorne gentle pysio you can do in bed does help with dizziness. Even the eye exercises. My vision still down but fine in daylight it's artifical lighting not good.

Hope your symptoms start improve soon. It is very difficult and worrying. Take care

[Quigley2005 in reply to Nackapan]

Thanks for your reply. I don't want to be off sick from work again. I work in a gp surgery. GPS think my symptoms must be something else which then makes me panic and feel worse

[clivealive Forum Support]

Hi Quigley2005 I think your loading doses should have continued until there was no further improvement per the N.I.C.E guidelines.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Quigley2005 in reply to clivealive]

I was hoping you would reply Clive.told him about NICE but he still thinks it's not low b 12 giving me vision and dizzy problems and fog. I got some vials and needles today to self inject. Am I jumping the gun? Should I wait to see if I improve or get worse or would you just self inject?

[clivealive Forum Support in reply to Quigley2005]

It's a catch 22 situation. As others have said your B12 level is bound to be high after having the injections and if you self inject they will be even higher thus justifying what your doctor thinks. However if you wait however long it is before the next test you may still have a high serum level but in danger of exacerbating the damage caused by the deficiency.

If your doctor won't follow the N.I.CE. perhaps he'll "recognise" the NHS

Testing of serum B12 levels after treatment has commenced is not necessary. (See bottom of page 5) where the 2 months interval of injections for those with neurological symptoms is also reiterated.

hey.nhs.uk/wp/wp-content/up...

[Quigley2005]

Thank you

[TroyNZ]

clivealive is absolutely correct, your experience sounds very similar to mine but, when I told my doctor, he ran some more tests but also immediately restarted injections every second day "until there is no further improvement". That was 7 months ago and, after my last visit (two weeks ago) he prescribed another three months.

Interestingly it took a lot longer to get back to where I was after restarting the injections but improvement did come and things are pretty good now.

I also self inject and, since you ask, I would say go for it. Others might advise differently but, as you can not overdose on B12, your tests are going to show high levels of B12 anyway, and your doctor does not appear to be following the guidelines I would not muck around.

Good luck. it does get better

[Quigley2005 in reply to TroyNZ]

Thank you so much

[Wagonwheel in reply to TroyNZ]

Me too!

Thank you for posting Quigley2005 and TroyNZ, thank you, your reply has reassured me.

I'm following exactly the same path as you, I've been SI bidaily prescribed by my doc for 3.5 months. I tried a couple of times to extend time between injections but symptoms returned and I ended up loosing a few days so now I'm following my doc's advice to continue for another few months..

I would SI even so it's a slow journey to recovery, I lost 2 months after the crash I experienced 4 days after loading doses finished and I haven't yet felt as good as I did then but am definitely improving.

Good luck.

[Gambit62 Administrator]

The problem won't be converting 'hydroxo' to active B12. If there is a problem it will be something that is stopping the active B12 passisng into your cells where it is needed. This (or something similar) happens in significant numbers of people meaning that they need much higher levels of serum B12 for enough to get through to their cells after loading shots.

You could try pointing your GP at the area of the PAS website that is specifically aimed at helping medical professionals improve the diagnosis and treatment of PA.

pernicious-anaemia-society....

[ACritical]

Same here!

[terrybraden]

Hi Quigley2005

A serum B12 level would be skewed right after an injection. You doctor should be aware of that. A liver function test might show if you have enough stored B12. If you’ve been deficient for a long time, (with the symptoms you describe you have been) it will take quite a while to build up your stores.

Don’t know of any problems converting hydroxo B12. If anything, it should be easier.

Do they test your MMA or homocysteine in the where you live? A high homocysteine level is still indicative of a deficiency as far as I know.

Better health to you.

[Hidden]

One thing I keep telling everybody in this forum is that if you are B12 deficient, you are probably deficient on other nutrients. Unless you are vegan or have no intrinsic factor, its hard to just be deficient in only one vitamin. Stay on the shots but go for B-complex instead of just B12, and add a multivitamin. Yes, you will get worse before you get better, that's what I hear a lot in this forum.