Alone

[Nicola1992]

Hi guys - I'm 22 years old I have was diagnosed with PA when I was about to turn 18. Ever since I have felt 'alone' I feel like I can't do what normal people my age do because I get so tired, I currently have my jabs at 10 weeks but this time I have felt terrible I am really low and don't know who to talk to, or what to do. I don't go out anymore if I do its to my friends and I'm home by 10pm because I find myself just sitting there I stay in my room a lot of the time before work and go back to my room after work. I haven't got many friends, I know depression is one of the symptoms but I feel like the doctors won't believe me if I say I am suffering with it - what can I do? Who can I talk to?

Thanks

[Gambit62 Administrator]

Really sorry to hear that you are suffering this much.

I think it is worth trying to talk to your GP but I'd be prepared for them not to listen and try pushing anti-depressants on you. If they do then at least you know and you've ruled out a what if scenario and you can go down the road of self-medication that so many of us have to follow, but think it is worth a try first just in case you have a GP that is prepared to listen.

In terms of self-medication there are lots of options - just a question of finding a route for getting B12 in that by-passes the normal one. People use sub-lingual tablets (membranes in mouth), skin patches, nasal spray (my own main fix) and also resort to injecting for yourself. Unfortunate the rules in the UK mean that you can only buy something in an injectible form if you have a prescription - however most of the continent is very different and you can buy ampoules eg from Germany (I do this as well).

it isn't an expensive medication - probably costs me £1-£2 a day to get the (enormous) amounts of B12 that I need to keep me functioning properly.

So

a) speak to doctor and see if they will at least trial more frequent shots - or may be show you how to administer them yourself and let you have a prescription for ampoules

You could ask for a serum test to be done just before your injections to see what levels are like - but don't listen to any mutterings about it being too high - just that if it is really low then that is definite indicator that you need more frequent maintenance doses.

b) if that doesn't work try out a few other non-injection options to see if one of those works for you - sublingual tabs, sublingual spray, nasal spray, skin patches and see if any of these work for you. You could also try seeing if methylcobalamin works better for you than hydroxocobalamin. You can't overdose on B12 so don't be scared of using more than it says on the 'tin' - but do make sure that you keep your folate levels high as body needs folate to metabolise B12 properly and also needs both for some key processes.

if they don't then got to

c) look at sourcing your own injections - subcutaneous is relatively straight forward and easy - sure some would say that IM is also relatively straight forward but it's not a route I've gone down yet.

Plenty of people on here who can support you - few videos on other posts and recommendations of reliable sources for B12 and all the other gubbins.

[Nicola1992 in reply to Gambit62]

Thank you I have currently started to use patches too but keep forgetting to order more - I have been working a lot more than normal too recently so I'm hoping that's just it too but will book an appointment with my doctor too and speak to them. All I can say is role on 24th December most people are excited for Christmas eve I'll be excited for my jab!!!

Thanks for the advice

[Gambit62 Administrator in reply to Nicola1992]

Know what you mean

[Hidden]

Hi Nicola,

You should not be feeling like you do at your age, you should go back to GP and have further investigations as to why you are feeling like you do. It is not uncommon to become folate and or iron def after starting B12 treatment, also thyroid conditions are common with PA, so go get some further investigations! Both my daughters were diagnosed B12 def at your age, they both live a completely normal life, you should not be so tired!

Kind regards,

Marre.

[Nicola1992 in reply to Hidden]

I have had the extra tests done recently as they were worried I was diabetic but they all came back normal

Thanks I'll keep trying for more tests through

[Hidden in reply to Nicola1992]

Perhaps get copies of your tests and see what has been tested and what is considered normal, sometimes normal is not normal or very borderline..

[Ctb567]

I'm 19 and I feel exactly the same. My friends all love to go to night clubs til 2-5 in the morning, if I do that then I am in bed for the next 2 days and usually get ill whereas they can just bounce back the day after. Its so frustrating because they get annoyed with me when I say I don't want to go and I don't want to be the one to say 'I'm ill, I can't do that' because they just don't understand and they'll probably just think I'm being dramatic. I feel miserable with life atm and I don't think I can blame it all on PA but I know what you mean when you say you feel trapped and depressed with this disease because it is horrible :/

I think you'll just have to go and speak to the doctors and tell them you're feeling down, they should be able to do something. Good luck