Pernicious Anaemia Vit B12 Deficiency ??

[Nytsom]

Hi All,
Does anyone suffer with Pernicious Anaemia VitB12 Deficiency ? I've been diagnosed with this; and need to go on VitB12 injections for the rest of my life. My cycling has taken a nose-dive in the last 12, month or so; some days I can hardly walk and my energy levels are at rock bottom. I'll probably begin the B12 injections sometime this coming week. Anyone experience this debilitating illness ?? I long to get out on the bike and get some kind of fitness again.

If you have PA, I'd like to hear how you manage it.

 

[mrandmrspoves]

Hi, PA is quite common and as it's name suggests it often takes time until it is diagnosed. Basically your stomach lining lacks the ability to absorb B12 - hence your level has fallen until you became symptomatic. Normally you will have a few loading dose injections to get your level up quickly, after which you will only need one every 3 months. Once your B12 is back to normal you should become symptom free again so the outlook is good.

 

[mrandmrspoves]

The injection you will be having is called Hydroxycobalamin - which is more of a mouthful to say than vitamin B12 - but that's what it is. Your loading dose injections will be given every 2-3 days for approx 2 weeks. As you cannot absorb B12 through your gut it has to be injected which is why you cannot take Tablets.

 

[fossyant]

It's common and also get your Vit D checked.

My B12 has been lowish but I've used Jarrows sublingual 1000 and 5000 international unit tablets. These are placed in your mouth and absorb through the tissues. I assume PA won't help in this case ?

I've ended up on hormone injections every three weeks which has seen my bloods return to normal especially heamocrit and haemoglobin as they were both bottom of scale.

You will feel miles better. Have you had a full bloods done ?

 

[BTwelve]

Hi All,
Does anyone suffer with Pernicious Anaemia VitB12 Deficiency ? I've been diagnosed with this; and need to go on VitB12 injections for the rest of my life. My cycling has taken a nose-dive in the last 12, month or so; some days I can hardly walk and my energy levels are at rock bottom. I'll probably begin the B12 injections sometime this coming week. Anyone experience this debilitating illness ?? I long to get out on the bike and get some kind of fitness again.

If you have PA, I'd like to hear how you manage it.

Morning I was diagnosed PA 2012. Like yourself i had to seek advice after becoming severely. Great UK charities you can seek advice or info from http://www.pernicious-anaemia-society.org also will post great hub created by UK patient use as a crash course b12d http://www.b12deficiency.info/b12-treatment/. My advice very important any folate or iron deficiencies are treated at same time b12 injections as will affect uptake b12injection. Also remember everyone responds differently. If you have neuro symptoms b12 should be given every other day until most improvement made. You will probably find most dictirs over look this important guide line and put you on 3 monthly. Many patients report 3 monthly is not enough. Keep a diary note improvements if symptoms return b4 next injection discuss with doctor about treating you not treating bloods. Here is petition currently ongoing in Scottish Parliament https://www.scottish.parliament.uk/GettingInvolved/Petitions/petitionPDF/PE01408.pdf I enjoying cycling but have to use my electric bike daily to commute to work My legs are very weak and can't power a pedal bike. Find a treatment that works for you and seek advice from b12 support groups they can give excellent advice about road to recovery. X

 

[Nytsom]

The injection you will be having is called Hydroxycobalamin - which is more of a mouthful to say than vitamin B12 - but that's what it is. Your loading dose injections will be given every 2-3 days for approx 2 weeks. As you cannot absorb B12 through your gut it has to be injected which is why you cannot take Tablets.

Uk injections Hydroxocabalamin; in Europe (some countries) still use Cyanocabalamin (the lowest form of B12) the USA uses Methylcabalamin,

 

[Nytsom]

It's common and also get your Vit D checked.

My B12 has been lowish but I've used Jarrows sublingual 1000 and 5000 international unit tablets. These are placed in your mouth and absorb through the tissues. I assume PA won't help in this case ?

I've ended up on hormone injections every three weeks which has seen my bloods return to normal especially heamocrit and haemoglobin as they were both bottom of scale.

You will feel miles better. Have you had a full bloods done ?

I've just ordered some 5000mcg Sublingual Methylcobalamin Tabs from Amazon. I'll not use them until I visit the GP.

 

[fossyant]

I've just ordered some 5000mcg Sublingual Methylcobalamin Tabs from Amazon. I'll not use them until I visit the GP.

If they are the Jarrows ones then we ordered from Amazon also. They often come from the US so may take a week or two.

Deffo make sure you get bloods done before starting.

I have to make sure my bloods aren't done just after an injection as they need to be done near the end of each treatment cycle.

 

[Nytsom]

Morning I was diagnosed PA 2012. Like yourself i had to seek advice after becoming severely. Great UK charities you can seek advice or info from http://www.pernicious-anaemia-society.org also will post great hub created by UK patient use as a crash course b12d http://www.b12deficiency.info/b12-treatment/. My advice very important any folate or iron deficiencies are treated at same time b12 injections as will affect uptake b12injection. Also remember everyone responds differently. If you have neuro symptoms b12 should be given every other day until most improvement made. You will probably find most dictirs over look this important guide line and put you on 3 monthly. Many patients report 3 monthly is not enough. Keep a diary note improvements if symptoms return b4 next injection discuss with doctor about treating you not treating bloods. Here is petition currently ongoing in Scottish Parliament https://www.scottish.parliament.uk/GettingInvolved/Petitions/petitionPDF/PE01408.pdf I enjoying cycling but have to use my electric bike daily to commute to work My legs are very weak and can't power a pedal bike. Find a treatment that works for you and seek advice from b12 support groups they can give excellent advice about road to recovery. X

Thanks for sharing your experience of B12 Deficiency; and posting the links; although I signed up to PAS last week; a very helpful organisation. My B12 blood test was as low as 136, inflammation in the red cells, Plasma-sticky blood and some other readings I cannot remember. Managed to get another appointment wit my GP next Tuesday; I'm hoping it goes better than the last visit.

 

[fossyant]

Docs are a bit crap with B12 and D and both are essential to have a good level. You ideally want to be in the middle of range.

I've had a right battle getting hormone replacement as my readings came in at bottom of normal at first. Normal being the correct level for a 100 year old. Fortunately my levels halved again during the 'debate' and we're off scale and only when I changed GP did I get treatment.

You will feel loads better after a few months. It's not an overnight recovery but once your bloods are a good normal you'll be fine.

As said don't be happy with bottom of the scale.

 

[Nytsom]

If they are the Jarrows ones then we ordered from Amazon also. They often come from the US so may take a week or two.

Deffo make sure you get bloods done before starting.

I have to make sure my bloods aren't done just after an injection as they need to be done near the end of each treatment cycle.

Yes Jarrows - received email saying they've been dispatched; and delivery between 11th and 13th of May. What do you think of them? I think I'm receiving the Cherry 5000mcg apparently they dissolve under the tongue? do you experience any side effects? I bought two bottles of 60, tabs for £14.98 per bottle - how often do you take them?

 

[fossyant]

I was taking them religiously every day to see if it helped with nerve pain. I forgot for a while and am trying to remember to take them. Just pop under tongue or in roof of mouth between gum and lip.

Taste fine. They do work. One thing is don't take then in the evening as they can keep you awake. Probably make you more alert. Haven't found that.

B12 seems to be essential for all sorts. It's supposed to be good for bursitis which I have over my sit bone.

Been using 1000s mainly

 

[Cush]

The daughter was diagnosed with PA earlier on in the year. Now because the iron in her blood is going up, she is being tested for that and because she has been told that excess iron may be inherited I have been for a blood test today. At the moment neither of us is saying any thing to the wife as we have a bit of worry this year and we don't want to increase it. Not saying any thing is hard, because we have always regarded the corner stone of our marriage to be honesty with no secrets. Now I feel I am being dishonest and secretive.

 

[Nytsom]

Well; Got all my blood tests printed out; my B12 was 130 (180 - 900) is what's required - I'm low. My Folate and Ferritin were Low. Red cells raised (Inflammation) Plasma Viscosity was a real concern with the GP. I'm awaiting an appointment at the Hospital Rheumatology Dept. And I'm Beginning a course of B12, injections - every other day for 6, weeks, and every 3, months there after; for the rest of my life.

I do appreciate all the feedback and advise given; I just hope this B12 loading - helps get me out on the bike again..

Regards
M

 

[SatNavSaysStraightOn]

Well; Got all my blood tests printed out; my B12 was 130 (180 - 900) is what's required - I'm low. My Folate and Ferritin were Low. Red cells raised (Inflammation) Plasma Viscosity was a real concern with the GP. I'm awaiting an appointment at the Hospital Rheumatology Dept. And I'm Beginning a course of B12, injections - every other day for 6, weeks, and every 3, months there after; for the rest of my life.

I do appreciate all the feedback and advise given; I just hope this B12 loading - helps get me out on the bike again..

Regards
M

I can't offer any advice, or experience but GWS and don't worry about injections once a quarter for the rest of your life. Any medication you suddenly find yourself on and dependent on for the rest of your life can seem quite daunting at first, but you will soon get the hang of it and realise isn't a problem.

Hope you are back on your bike soon as well.