Posts - Pernicious Anaemia Society | HealthUnlocked

Pernicious Anaemia Society

32,319 members • 23,535 posts

All posts for August 2019

B12 patches

Hi all My daughter is still on 3 monthly B12 injections from the GP but after 8 weeks has noticed a decline and the need for a top up. Fortunately she...

Hi all My daughter is still on 3 monthly B12 injections from the GP but after 8 ...

Daffodi1

•5 years ago

31 Replies

GP still not getting it!

Had 6 loading doses in June, Doctor gave them reluctantly as levels had risen to 400 from 140 on oral supplements. I gave her lots of info re nhs guidelines...

Had 6 loading doses in June, Doctor gave them reluctantly as levels had risen to...

Lurcher-lady

•5 years ago

7 Replies

Newbie what is the range for B12, iron etc levels

Hi all what are the "standard UK" ranges for blood levels etc, need an idea when I have bloods next week.

Hi all what are the "standard UK" ranges for blood levels etc, need an idea when...

Maudsnorts

•5 years ago

4 Replies

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Mouth Ulcers/Cold Sores

Does anybody get mouth ulcers (cold sores) with their B12D? I was low on b12 (159) for many years and got cold sores frequently. I've been supplementing for...

Does anybody get mouth ulcers (cold sores) with their B12D? I was low on b12 (...

lownskater52

•5 years ago

10 Replies

Digestion?

Hey everybody, 32 yrs old Vegan with some poor digestion issues with b12d (159) for 10 years or so Been supplementing 3.5 months heavily. Started with...

Hey everybody, 32 yrs old Vegan with some poor digestion issues with b12d (159) ...

lownskater52

•5 years ago

16 Replies

POEMS

Hey everyone, Has anybody ever heard of the disease called POEMS Syndrome? It's a rare disorder that seems to have a connection to b12 deficiency. I'm...

Hey everyone, Has anybody ever heard of the disease called POEMS Syndrome? It'...

lownskater52

•5 years ago

7 Replies

Lost myself

My memory started going bad 2yrs ago now nearly 5yrs untreated I forget how to spell my own name I wanna shout out cos I’ve started feeling as if I’m in Stone...

My memory started going bad 2yrs ago now nearly 5yrs untreated I forget how to s...

Queeniz

•5 years ago

28 Replies

Joint and muscle aches

i have been increasingly experiencing joint pain and muscle aches. I have been self injecting b12 daily since April and take folic acid. I am also vit D...

i have been increasingly experiencing joint pain and muscle aches. I have been s...

Numbsew

•5 years ago

2 Replies

Does anyone have pain in veins being used to draw blood? Can anything be done for that?

I am on a strong blood thinner and feel that my veins are going to split open. The blood thinner is due to arrhythmias which seem to have cleared up after...

I am on a strong blood thinner and feel that my veins are going to split open. ...

tvellepern

•5 years ago

1 Reply

B12 Storage temperature??

I have been self injecting for 5mths every other day . Initially good results, many symptoms easing or gone. Now some gradually returning. Tiredness...

I have been self injecting for 5mths every other day . Initially good results,...

jaybirdxNHM

•5 years ago

4 Replies

muscle cramps in arms

does anyone else get pain and muscle cramps in both arms? I wonder if it’s something to do with my HYDROXOCOBALAMIN injection I had on thursday? Didn’t get...

does anyone else get pain and muscle cramps in both arms? I wonder if it’s somet...

rr1993

•5 years ago

1 Reply

Can someone show me how to inject B12 the first time, please?

Hi, I suffer with PA and have been on 3 monthly B12 injections at my doctor's surgery for about 3 years. However, 3 months between injections is too long and...

Hi, I suffer with PA and have been on 3 monthly B12 injections at my doctor's su...

Autumn55

•5 years ago

4 Replies

Gastritis

I have gastritis in the antrum of the stomach. Does anyone take omeprazole for this purpose. Given I SI every 2 days I’m thinking there wouldn’t be any issues....

I have gastritis in the antrum of the stomach. Does anyone take omeprazole for t...

Hidden

•5 years ago

9 Replies

First Time Self Injecting

So I have just self injected my b12 into my leg for the first time. I was extremely nervous, but kept reminding myself how much better I was going to feel....

So I have just self injected my b12 into my leg for the first time. I was extre...

hjcohen

•5 years ago

7 Replies

Buying B12 from Germany

I need to get some B12 from Germany (usually Rotexmedica hydroxocobalamin). It's been about a year since I last placed an order and things have changed a......

I need to get some B12 from Germany (usually Rotexmedica hydroxocobalamin). It'...

Cetus

•5 years ago

21 Replies

Why is folate so important?

Hi all, could somebody kindly explain to me why it's important to take folate acid or methyl folate when I'm getting B12 shots? I've been told they're...

Hi all, could somebody kindly explain to me why it's important to take folate ac...

Heidiv

•5 years ago

10 Replies

B12 and thyroid

Hi can any body tell me, preferably with references , if b12 deficiency can negatively impact the thyroid gland , eg raising tsh etc, or is b12 deficiency and...

Hi can any body tell me, preferably with references , if b12 deficiency can neg...

Scothyroidy

•5 years ago

3 Replies

Body Temperature Regulation

So I was thinking back to earlier in the year prior to my b12d diagnosis (159) when I went from my home state of Florida (very wet) to Arizona (very dry). I...

So I was thinking back to earlier in the year prior to my b12d diagnosis (159) w...

lownskater52

•5 years ago

12 Replies

Nighttime headaches

Anyone else with constant migraines? I suffer with B12 deficiency and I'm on a 3 monthly cycle for the injections, I've posted before but was wondering how...

Anyone else with constant migraines? I suffer with B12 deficiency and I'm on a 3...

Cb1963

•5 years ago

12 Replies

Does treating PA with injections help reduce effects of other autoimmune issues?

Been injecting for just about 2 months, treating PA. I have a number of other autoimmune issues as well and am wondering if anyone has experienced relief from...

Been injecting for just about 2 months, treating PA. I have a number of other au...

EllieMayNot

•5 years ago

9 Replies

Intrinsic factor

Looking at recent blood results my intrinsic factor is 1, which doc says is fine, says it should be below 1.2 U/ml. I self Inject now as spray/tablets don’t...

Looking at recent blood results my intrinsic factor is 1, which doc says is fine...

Lurcher-lady

•5 years ago

8 Replies

PA and PA?

Hi all.. does anybody have PA and psoriatic arthritis? I’ve just started on prednisone and methotrexate and feeling very depressed and hopeless about my future...

Hi all.. does anybody have PA and psoriatic arthritis? I’ve just started on pred...

Over10pain

•5 years ago

3 Replies

Pain relief...

Hello I have been taken off my NSAIDS for four weeks because of some blood test results. I cant take codeine based painkillers so am just taking paracetamol....

Hello I have been taken off my NSAIDS for four weeks because of some blood tes...

Nikki_55

•5 years ago

26 Replies

Sudden weakness in legs and short of breath

Hi , Anybody here experienced sudden weakness in legs and shortness of breath after 20 mins I feel ok.Now I am on self injection and my initial b12 is 170.

Hi , Anybody here experienced sudden weakness in legs and shortness of breath a...

Santoshk7

•5 years ago

8 Replies

I'm new here - blood test advice?

Hi - I'll try and not be garbled. I know you'll ask if you need more info :-) I guess this is a B12 deficiency query, not a full blown PA, as I don't have...

Hi - I'll try and not be garbled. I know you'll ask if you need more info :-) ...

EaroleNeen

•5 years ago

9 Replies

PAS, NICE and guidelines for PA.

The PAS have had a meeting with NICE about getting proper guidelines for the diagnosis and treatment for Pernicious Anaemia. Unfortunately, it looks like...

The PAS have had a meeting with NICE about getting proper guidelines for the dia...

fbirder

•5 years ago

28 Replies

Loading dose jab make me feel very sleepy the next day.

Yesterday was my 4th out of 6 loading dose IM b12. Today I feel so tired I can hardly lift myself from the chair. This happened on the day after my very first...

Yesterday was my 4th out of 6 loading dose IM b12. Today I feel so tired I can ...

Damseltree

•5 years ago

11 Replies

Is there a PA & Diabetes relationship

I follow a healthy diet as have PA, under active thyroid, and high cholesterol. My bloods now show I am heading towards diabetes I follow a good excercise...

I follow a healthy diet as have PA, under active thyroid, and high cholesterol. ...

Staz

•5 years ago

7 Replies

I need help getting proper needles and syringes for self medicating with B12 for the pain. One injection per month is not enough.

I am in the USA and have access to B12 for self medicating but can't buy the necessary needles and syringes. Can anyone help with sizes and types I need? The...

I am in the USA and have access to B12 for self medicating but can't buy the nec...

tvellepern

•5 years ago

24 Replies

I think I have PA but my test results say otherwise? (& rapid increase in symptoms?)

Hello! I have had anaemia for about a year and my GP has been trying to work out what is causing it. I initially had low-ish b12 so had the b12 injections and...

Hello! I have had anaemia for about a year and my GP has been trying to work out...

greatcrestedgrebe

•5 years ago

7 Replies

Posts - Pernicious Anaemia Society | HealthUnlocked

Pernicious Anaemia Society

All posts for August 2019

B12 patches

GP still not getting it!

Newbie what is the range for B12, iron etc levels

Mouth Ulcers/Cold Sores

Digestion?

POEMS

Lost myself

Joint and muscle aches

Does anyone have pain in veins being used to draw blood? Can anything be done for that?

B12 Storage temperature??

muscle cramps in arms

Can someone show me how to inject B12 the first time, please?

Gastritis

First Time Self Injecting

Buying B12 from Germany

Why is folate so important?

B12 and thyroid

Body Temperature Regulation

Nighttime headaches

Does treating PA with injections help reduce effects of other autoimmune issues?

Intrinsic factor

PA and PA?

Pain relief...

Sudden weakness in legs and short of breath

I'm new here - blood test advice?

PAS, NICE and guidelines for PA.

Loading dose jab make me feel very sleepy the next day.

Is there a PA & Diabetes relationship

I need help getting proper needles and syringes for self medicating with B12 for the pain. One injection per month is not enough.

I think I have PA but my test results say otherwise? (& rapid increase in symptoms?)

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