Seeking advice please: Hello everyone I... - Pernicious Anaemi...

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Seeking advice please

Wagonwheel
Wagonwheel

Hello everyone I'm new and just wanted to thank you for providing such helpful and insightful content.

Around 6 weeks ago I went to my doctors requesting treatment for my very painful feet and following the results of a blood test to rule out arthritis was diagnosed with B12 deficiency with Vit D 85 (I think) and B12 at 150.

I have been a long distance hill runner for years but for the last 2-3 years my running has decreased, struggling to run more than 3 miles and finding even this takes days to recover from.

I was diagnosed with depression 3 years ago (wondering if this was actually B12 deficiency) and on SSRI's for 2 years, stopped a year ago.

Prior to the diagnosis I realised I had assigned my symptoms; depression, chronic fatigue, breathlessness, leg muscle weakness, falling over, numb toes on right foot, foggy brain, terrible memory, sore mouth, sore feet (duck waddle every morning) and weight gain (muscle turned to flab) to the menopause and middle age!?

After the 4th loading injection I went for a run and felt like I used to feel years ago I was able to run freely without having to look where I put my feet and I had a spring and strength to my legs again that felt so wonderful.

This lasted for a week after the final loading injection then without warning on a run my legs felt like they were made of lead, I couldn't get my breath and I had to keep stopping. At the time I thought how unlucky to get a virus...but the symptoms didn't go away so I saw a different doctor and we discussed alcohol, I was drinking beer in the evenings and she said that this is causing the malabsorbtion of B12 and advised to stop drinking alcohol which I have. She agreed to move my maintenance injection forward however this had very little impact on my symptoms.

My symptoms aren't as extreme as they were prior to the loading injections but I am really struggling to function normally, I'm so tired, tearful and weak I haven't been for a run in over a week, my mouths really sore and I don't seem to be able to think clearly.

I'm just not sure what I should do now, having experienced how wonderful it feels to feel 'normal' I can't stand reverting back to being unable to get out of bed. Am I being impatient or should I consider self injections?

8 Replies
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clivealive
clivealiveForum Support

Hi Wagonwheel is your low Vitamin D being "dealt with"?

Have you had your Folate level checked?

I am not a medically trained person but there are others on here who will give you good advice.

I wish you well.

Thank you Clivealive

They said vit D at an acceptable level but to take a supplement with food as summer is coming to an end :( folate wasn't mentioned...

Drinking a couple of beers In the evening isnt going to affect absorption of B12, and it’s irrelevant anyhow as you’re having injections.

Many of your symptoms are signs of neurological damage. In that case, if you’re in the UK, you should have had loading doses three times a week, until there was no further improvement of symptoms then maintenance doses every 8 weeks.

Ask your doctor to get treated as described in the BNF (British National Formulary, she will have a copy).

Wagonwheel
Wagonwheel in reply to fbirder

fbirder, thank you. I realise I needed somebody informed and experienced to spell it out for me.

I will be making an appointment to see my gp tomorrow and post how it goes.

Thank you!

I disagree with fbirder re the beer - see the more recent post on "Alcohol and B12" by wavylines - while drinking beer may not strictly, scientifically, affect your "absorption" of B12, in practice it certainly depletes your levels and generally people with B12 deficiency find they are not able to tolerate much alcohol any more.

You so have my sympathy - this rotten condition takes away being able to take for granted many of the things you used to enjoy and from now on you will have to manage everything to feel OK again.

Additional injections and supporting supplements may well be the answer for you, especially if you want to continue running.

Good luck!

Hi Frank!

Do you drink regularly/daily or do you avoid alcohol? If you usually drink, do you find any difference if you go for say a week without drinking?

I'm interested to see if there's anyone who has tried doing this and noted the results.

Thank you, Denise

Hi Frank!

Do you drink regularly/daily or do you avoid alcohol? If you usually drink, do you find any difference if you go for say a week without drinking?

I'm interested to see if there's anyone who has tried doing this and noted the results.

Thank you, Denise

Well alchohol certainly affected me! Generally I dont really drink regularly but went away for a few days & drank moderately. All my symptoms came back with a vegence after a couple of days. Day after I got home, feeling shocking I clocked there might be a link & increased my b12 injections. I self inject. Am now back on the road to recovery. Personally I wont be drinking alchohol again.....not worth the consequences.

You need to ask your doctor to repeat the loading phase. Explain about the Alchohol. Hope you feel better soon.

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