Fading away

[Danni455]

Hi I'm going to jump straight into this. I collapsed and the hospital diagnosed b12 disorder from the p anemia and gave me loading doses, followed by a year of 12 weekly injections. Then they say I was cured and stopped giving me them which brought back all my symptoms. I then got NAFLD (non alcoholic fatty liver disease) and then covid hit. I resorted to buying the vials myself and injecting 1ml once a week and life was back to normal, unfortunately now I can get the vials and I e not had a jab for over a year. I can't get to sleep and when I do I wake with nightmares, I'm constantly tired and have pains on both legs and my migraines have come back with freezing cold hands and feet so bad they go numb and I've started heating chatting when no one is around. I've called Dr's it took 3 days fir them to agree to a blood test I. Two weeks then a Dr's appointment 2 weeks after that.

I don't know if I can go that long, the pain is constant and the Co codamel 30/500 don't help, if anyone has any advice I'd appreciate it.

[wedgewood]

I cannot understand your doctor saying that you are cured . Pernicious Anaemia is not curable and you need injections for life. . Good that you were able to self-inject and keep well . You write that you can get the vials , but that you haven’t had an injection for over a year . Did you meant to write that you can’t get the vials ? It sounds as though your symptoms have returned because you haven’t had any injections for over a year . Your doctor should reinstate your B12 injections asap . He/she shoujd read the guide lines and stick to them

If you fail to get them reinstated , then you must start self -injecting now . I will send you information.

Best wishes

[Danni455 in reply to wedgewood]

Thanks, I did mean cant get the vials. My hands are shaky now with pins and needles making typing a long and slow process.

[wedgewood]

The following German online pharmacies will deliver B12 depot single use ampoules to U.K. .

apohealth.de Site is obtainable in English (Union flag, bottom left on my device ) also deliver World wide but not to Australia or New Zealand .

versandapo.de Site is in German . Use Google chrome to obtain translation .

The following brands are obtainable

Panpharma ( formerly Rotexmedica ) b12 depot 1mg x 1ml ampoule ( depot indicates Hydroxocobalamin) ref no 16199653. This is the most popular ampoule used by PAS members .

It is the best value , but sometimes is out of stock . You can then opt to be emailed to be told when it is back in stock .

Pascoe B12 depot 1.5mg x 1ml ampoules- Packet of 10 ref no 07568672

Pascoe b12 depot 1.5 mg x 1ml ampoules-10 packets of 10 ampoules (100)

Ref no 07568695

Hevert b12 depot 1mg x2ml ampoules packet of 10

Ref no 06078368

Hevert b12 depot 10 packets of 10 ampoules- ( 100)

Ref

When filling out your address on the German online pharmacies sites , do fill in your country first of all . “Germany”: will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich GrossBrttaniens — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that ..

Best wishes .

[Danni455 in reply to wedgewood]

Thank you

[charks]

I too collapsed and was rushed into A&E. It was during Covid and I was treated very badly. During my collapse I completely excavated my bowels. I was a mess. I was in A&E for over 7 hours and no one bothered to clean me up. And they didn't manage to diagnose me with PA either. So you were lucky that they found out you had PA. But it appears your luck has run out with your GP deciding that you are cured. There is no cure for PA. But you can cure your NAFLD. Loosing weight will reverse it. I also had NAFLD but lost weight and now have a normal liver.

[Danni455 in reply to charks]

I struggle to stay at 7 stone, losing weight isn't an issue, keeping it is. I have no appetite and never feel hungry it's only when having b12 jabs u actually want to eat.

[charks in reply to Danni455]

Sorry to hear that. Lean NAFLD is much more serious than the usual NAFLD. From what I've read it could be caused by your B12D. I would start injecting again as soon as possible.

[Parlay]

Gosh you are having a rough time. As the amazing help on here suggests go back to self injecting. Take your time there’s no rush you’ve typed out quite a long post on here and have done amazing. I would add alongside getting your b12 back and taking charge of that please make sure you get vitamin D3 and K2, also make sure you are getting magnesium in the form of glycinate or threonate as that is often a cause of migraines and great for nerves etc. get potassium from foods. Eat plenty of seeds and nuts if you can. Also maybe keep a food diary. So many of us now how intolerances. Also often we have the joy of another autoimmune disorder so get thyroid etc checked. Good luck.

[Tanyanarialucia1965]

Obviously you need to get b12 injections urgently, it’s a sorry state of affairs that we all have to resort to any way possible to get them, there will be beauty salons ect that offer them for a price whilst you work out other ways which I’m sure will be suggested on here.. make sure you’re getting methyl folate tablets too which I buy from Amazon .

[Danni455]

Thank you all for your encouraging words. I'm just waiting for vials to turn up and hopefully it'll slow everything down. My dad died 2013 of dementia and my mums in late stages(end of life) with the same thing, I remember her hearing voices and I thought I was starting to lose it too.

[wedgewood in reply to Danni455]

Serious lack of B12 can result in a kind of dementia . In the past this dementia was called “ Megaloblastic Madness “ as red blood cells showed up as larger and fewer than normal . Lack of vitamin B12 prevents the red blood cells from maturing , leaving them too large to function and carry oxygen where needed . This can be caused by any of the reasons for B-12 deficiency .

[PhilAB in reply to Danni455]

Dementia is a long term b12 deficiency. You sound like you have neurological damage thus as per NICE guidelines you need Every other day injections.

Pins and needles is a sign of severe b12 d.

It sounds you are really struggling. Regarding food, eating healthy and regularly is key when you have a b12 d and/or PA.

[boisland]

B12 deficiency was shown to be a significant risk factor for NAFLD.. Please see that your your VIT D & folate are at optimal levels as well. Also make sure you are on an "adequate" B12 injection schedule.. journals.lww.com/ajg/Fullte...

[Hockey_player]

So sad to hear that your doctor is so incompetent! I hope you can start getting injections every other day soon. It's sad to hear that they would let you get into such a mess.