Some good news!

[Nuala88]

Hey everyone,

I just wanted to give an update as I had a call from the doctors this morning and after many months (this time around anyway, overall, more like years!), they have agreed to move me on to injections every 2 months, rather than just every 3 - I want to do a little happy dance!

Basically, they have been monitoring my levels and it is showing a massive drop from when I have the injections to when its due, even though it's just within the 'normal' range. I've been saying for years that I feel like a zombie for at least a month before my injection is due, but until they did this they just kept saying my levels were 'normal' and that it must be something else.

I also had the intrinsic factor test done both via my GP and privately (it took that long coming back on NHS, 3 months, I decided to get it done privately but ended up with the results around the same time) which came back negative, but luckily the note attached to my private one did say that this did not rule out a diagnosis of PA (I don't know about the one my GP ordered).

I think it has also helped that I have been seeing the same doctor every month (sometimes twice) since June for a variety of issues (including my husband's) so he has actually 'seen' my ups and downs - I think this is key because whenever I used to doubt myself it has always been my family and friends who see me regularly who have noticed this. I have to say, he has been really good and taken me seriously which has helped loads.

Of course, the message relayed to me wasn't without a snide remark from the receptionist about the cause being my diet and that, I quote, "need to eat meat" (really, would she say that to someone who doesn't eat it on religious grounds, don't think so!) - hmmmm, if that's really the case why is the doctor not just simply suggesting I take dietary supplements? Oh yes, because I've already tried that and ended up with optic neuritis after they took me off the injections the first time! We all know that being veggie is a risk factor but I know plenty of veggies who are just fine, and also at least 4 other family members who have a B12 deficiently, plus others with possible 'linked' autoimmune conditions - thyroid, MS etc.

Overall though I'm taking the positive from this, I've got what I wanted which was more frequent injections. No closer to a definitive 'diagnosis' but when I can, I'm going to continue with the private tests to see if I can get a few more answers. This is definitely a step in the right direction - persistence pays! I have felt exhausted trying to explain myself and 'given up' numerous times but just shows they can do them more frequently than the guidelines suggest.

[Sharon75]

Well done! It's good to know there's hope!

[clivealive Forum Support]

Hi Nuala88 good on you for carrying on.

Please get your Folate level checked somehow if not already done.

I wish you well

[Nuala88 in reply to clivealive]

Thank you clivealive - is that part of any other tests for example, full blood count - no ones ever mentioned it but just wondering if I need to ask for a specific test/it may already have been done?

[clivealive Forum Support in reply to Nuala88]

No - it's not always included in a routine FBC test.

"Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine.

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk."

Vitamin B9 (Folic acid) University of Maryland Medical Centre

In addition, some breakfast cereals in the UK are fortified with folic acid.

[Gambit62 Administrator]

really that the GP has recognised that you need more frequent B12 injections.

sorry about the receptionist - not that here opinion really counts for anything on the matter. Suspect that the amount of meat you would have to eat would be substantial - half a cow a day? certainly not practical and would probably cause you a lot of other problems.

Really good to have some good news and feel that there are some decent GPs out there.

[miglet54]

Can't understand why the receptionist thought she was qualified /entitled to have an opinion.

[Nuala88 in reply to miglet54]

I think it's possibly been recorded in the doctors comments somewhere and that's how she chose to communicate it unfortunately. I've had conversations with my doctor and he has gone as far as saying that being vegetarian 'may not help' but I don't think anyone can be 100% certain that that is the cause of my deficiency completely. It may be all, part or none who knows! Like Gambit62 said though, there are pros/cons to eating meat/being vegetarian anyway and it does seem a little bit like you can't win when it comes to dietary issues so I just think it's a little bit of blinkered view point. Whenever I've told anyone I'm vegetarian they just seem to hook onto that and it's as if you can't be vegetarian and have another cause. Diet issues are complex and regardless, would they deny other conditions treatment based on 'lifestyle factors' - doubt it!

[Gambit62 Administrator in reply to Nuala88]

vegetarian doesn't mean that your diet is devoid of B12 - vegan is the real risk.

I gave up meat in my 20s because I just couldn't digest it but I've always enjoyed a lot of dairy and egg in my diet ... and have tended to eat breakfast cereals that are fortified with B12.

[Nuala88 in reply to Gambit62]

Yeah, I mean being honest, I often have to say I'm 'vegan' because I've struggled a lot with dairy from being a baby, I'm not sure if it's an intolerance or what but I certainly can't 'force-feed' myself. I do eat eggs and some things with dairy in though so that bit isn't exactly a 'choice', I just can't eat it. I've acknowledged with my doctor too that I could probably make better choices with my diet (who couldn't, I doubt there's many people who manage it perfectly all the time) and try to have a better routine/eating regular/more nutritiously balanced meals but it's been a bit of a catch 22 when I've been operating at a barely basic level, not really being able to 'think' about anything other than trying to get myself out of bed in the morning, getting to work, doing my best to function there, and then crashing out exhausted when I get home - hopefully with better maintained B12 levels I might have a bit more 'get up and go',