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Experiences with
Pernicious anaemia
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Cobalt allergy
I have had
pernicious
anaemia
for at least 40 years. My partner and I are now in our 80s. After many years on lanasaprozole she now has B12 deficiency with a high MMA , with symptoms.
I have had
pernicious
anaemia
for at least 40 years. My partner and I are now in our 80s. After many years on lanasaprozole she now has B12 deficiency with a high MMA , with symptoms.
Yingtong22
in
Pernicious Anaemia Society
9 months ago
Ducks in a row
I was first diagnosed with
Pernicious
anaemia
3 or 4 years ago but thought nothing of it until my legs and arms started going numb and I kept falling round the place and had difficulty walking and getting up from a fallen or seated position.
I was first diagnosed with
Pernicious
anaemia
3 or 4 years ago but thought nothing of it until my legs and arms started going numb and I kept falling round the place and had difficulty walking and getting up from a fallen or seated position.
Whiteways4711
in
Pernicious Anaemia Society
4 months ago
Vitamin B12 Injections
Hi, I hope you're all hanging on in there and having a better day than me,,, I have just started a loading dose of 6 Vit B12 injection because I've been suffering badly for a year now with Pins and Needles all over my body daily especially my head. I have had 5 injections now and I'm still the same
Hi, I hope you're all hanging on in there and having a better day than me,,, I have just started a loading dose of 6 Vit B12 injection because I've been suffering badly for a year now with Pins and Needles all over my body daily especially my head. I have had 5 injections now and I'm still the same
bubbatetley
in
Pernicious Anaemia Society
10 months ago
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Another ignorant GP - "is PA forever?" he asked
I wish I had recorded the conversation with the trainee GP this morning, he asked me if
Pernicious
Anaemia
was forever and when could I expect to stop the injections? He also asked how I was managing with self injection.
I wish I had recorded the conversation with the trainee GP this morning, he asked me if
Pernicious
Anaemia
was forever and when could I expect to stop the injections? He also asked how I was managing with self injection.
HKAnne
in
Pernicious Anaemia Society
1 year ago
Terrified
I’m in a complete mess. In 2011 I was diagnosed with vitamin B12 deficiency, my level was 154 and I also had vitamin D deficiency and iron deficiency at the same time. I was given loading doses of B12 and felt so much better and then went onto 3 monthly injections. I found that towards the end of the
I’m in a complete mess. In 2011 I was diagnosed with vitamin B12 deficiency, my level was 154 and I also had vitamin D deficiency and iron deficiency at the same time. I was given loading doses of B12 and felt so much better and then went onto 3 monthly injections. I found that towards the end of the
Hayley31
in
Pernicious Anaemia Society
10 months ago
Start of B12 treatment but can I do exercise?
I have digestive issues (which I’ve learnt can affect absorption) and family history of
pernicious
anaemia
but have been put on B12 supplements to take until another blood test in 3 months. I was given very little info at the appointment and have found out most of this since.
I have digestive issues (which I’ve learnt can affect absorption) and family history of
pernicious
anaemia
but have been put on B12 supplements to take until another blood test in 3 months. I was given very little info at the appointment and have found out most of this since.
Foodie101
in
Pernicious Anaemia Society
1 year ago
B12 Injections stopped as I do not meet crtieria.
Good morning I now have information to identify that; 1) the practice updated their process in November 2022 to " ensure only patients with P.A. receive B12 injections. 2) Blood tests in 2018 show low B12, but Intrinsic factor and celliac screen were negative. 3) GP Practice direct me to take
Good morning I now have information to identify that; 1) the practice updated their process in November 2022 to " ensure only patients with P.A. receive B12 injections. 2) Blood tests in 2018 show low B12, but Intrinsic factor and celliac screen were negative. 3) GP Practice direct me to take
b12timbo
in
Pernicious Anaemia Society
11 months ago
Bile acid malabsorption
Hi , has anyone here had a seHCAT scan for bile acid malabsorption. Been having bad stomach issues for a while and with back log seeing consultant took ages . In March finally had a consultation and lots of test all clear . Not sure if this is last hope but having seHCAT scan for bile acid malabsorption
Hi , has anyone here had a seHCAT scan for bile acid malabsorption. Been having bad stomach issues for a while and with back log seeing consultant took ages . In March finally had a consultation and lots of test all clear . Not sure if this is last hope but having seHCAT scan for bile acid malabsorption
andepande
in
Pernicious Anaemia Society
11 months ago
Vitamin B12 produced by gut bacteria modulates cholinergic signalling
I simply can't help but think that this has some relevance to
Pernicious
Anaemia
. But goodness knows what! And the lack of access precludes reading it all to try to find out.
I simply can't help but think that this has some relevance to
Pernicious
Anaemia
. But goodness knows what! And the lack of access precludes reading it all to try to find out.
helvella
in
Pernicious Anaemia Society
5 months ago
low Ferritin
pernicious
anaemia
cannot be ruled out. Palmar erythema new development, hot flushes, cramp in fingers and toes. possibility of peripheral neuropathy. N.b. Not diabetic. Just going round the bend! Many thanks in advance for any help!
pernicious
anaemia
cannot be ruled out. Palmar erythema new development, hot flushes, cramp in fingers and toes. possibility of peripheral neuropathy. N.b. Not diabetic. Just going round the bend! Many thanks in advance for any help!
Beardies2
in
Thyroid UK
1 year ago
Advice about diarrhoea symptoms please
I have had very little assistance from my GP in relation to my
Pernicious
Anaemia
with gastric parietal cell antibodies diagnosis earlier this year. GP reluctantly agreed 5 loading doses but no more than three monthly injections after that, even though I have neurological symptoms.
I have had very little assistance from my GP in relation to my
Pernicious
Anaemia
with gastric parietal cell antibodies diagnosis earlier this year. GP reluctantly agreed 5 loading doses but no more than three monthly injections after that, even though I have neurological symptoms.
yorkshiregirl4
in
Pernicious Anaemia Society
10 months ago
'Malabsorption' - what do doctors mean exactly?
Hello, When reading about causes of deficiences such as iron, folate, B12 etc. the medical information (from whichever source) lists the causes and malabsorption is always one of them. To me this seems vague compared to the other causes: eg. in the[i] Guidance for Primary Care on the Interpretation
Hello, When reading about causes of deficiences such as iron, folate, B12 etc. the medical information (from whichever source) lists the causes and malabsorption is always one of them. To me this seems vague compared to the other causes: eg. in the[i] Guidance for Primary Care on the Interpretation
Sneedle
in
Thyroid UK
11 months ago
Chromium
Hello First of all, 'Thanks' to all you knowledgeable and kind people who respond on this forum. I was intending to do my advanced thyroid profile test tomorrow morning ( fingerpick) I have avoided Vitamin B complex, D, and my Bone restore (calcium) as advised and then last night I suddenly thought
Hello First of all, 'Thanks' to all you knowledgeable and kind people who respond on this forum. I was intending to do my advanced thyroid profile test tomorrow morning ( fingerpick) I have avoided Vitamin B complex, D, and my Bone restore (calcium) as advised and then last night I suddenly thought
Indigourchin
in
Thyroid UK
11 months ago
Latest GP diagnosis is... I’m getting old! I'm 55! Help with next steps please… 😠
My plan, which I’d welcome comments and advice on, is: 1️⃣ Have a private
Pernicious
Anaemia
Profile test for: FBC, Reticulocyte Count, Folate, Iron, TIBC, Active B12, Homocysteine, Methylmalonic Acid, Intrinsic Factor Abs and an autoantibody profile including (Liver Kidney Microsomal Ab, Smooth Muscle
My plan, which I’d welcome comments and advice on, is: 1️⃣ Have a private
Pernicious
Anaemia
Profile test for: FBC, Reticulocyte Count, Folate, Iron, TIBC, Active B12, Homocysteine, Methylmalonic Acid, Intrinsic Factor Abs and an autoantibody profile including (Liver Kidney Microsomal Ab, Smooth Muscle
KBird01
in
Pernicious Anaemia Society
1 year ago
Is the Pernicious Anaemia Society commenting on the proposed new NICE guidelines?
I am surprised not to see any mention of the new NICE guidelines on the PAS website. I was a paid up member last year but did not renew membership this year as to be honest it did not seem to offer value for money. Given the number of people who are struggling with inappropriate diagnosis/treatment I
I am surprised not to see any mention of the new NICE guidelines on the PAS website. I was a paid up member last year but did not renew membership this year as to be honest it did not seem to offer value for money. Given the number of people who are struggling with inappropriate diagnosis/treatment I
jeremycat_
in
Pernicious Anaemia Society
9 months ago
Advice on low B12 please
Also, my maternal grandmother had
pernicious
anaemia
. She died aged 28, in childbirth, due to complications of
pernicious
anaemia
(this was in the 1930s though!). I was wondering whether there is a genetic element to the condition? Any advice would be welcomed. Thank you.
Also, my maternal grandmother had
pernicious
anaemia
. She died aged 28, in childbirth, due to complications of
pernicious
anaemia
(this was in the 1930s though!). I was wondering whether there is a genetic element to the condition? Any advice would be welcomed. Thank you.
Buntikins
in
Pernicious Anaemia Society
1 year ago
Help with getting help please
I had bloods done recently as I'm experiencing extreme fatigue, shortness of breath, difficulty concentrating, generally bring uncoordinated and discombobulated. This test came back abnormal, I self inject B12 not from prescription because when I moved Dr surgery they refused to prescribe it like my
I had bloods done recently as I'm experiencing extreme fatigue, shortness of breath, difficulty concentrating, generally bring uncoordinated and discombobulated. This test came back abnormal, I self inject B12 not from prescription because when I moved Dr surgery they refused to prescribe it like my
Friedeggsontoast
in
Pernicious Anaemia Society
11 months ago
Am I really lacking B12?
I was diagnosed with PA around 2018, I had the camera down which confirmed atrophic gastritis, I had positive tests for anti parietal cells and intrinsic factor; so classic PA. My B12 levels were around 300 at the time and not considered low but i was given loading doses and monthly injections. However
I was diagnosed with PA around 2018, I had the camera down which confirmed atrophic gastritis, I had positive tests for anti parietal cells and intrinsic factor; so classic PA. My B12 levels were around 300 at the time and not considered low but i was given loading doses and monthly injections. However
expatkerry
in
Pernicious Anaemia Society
11 months ago
Positive IFA, Negative Parietal Cell, B-12 injections affect IFA test
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
Hello, I recently tested positive for intrinsic factor blocking antibody but the result of my parietal cell antibody test was negative. I’m curious if other members have had this same experience? My doctors have suspected a PA diagnosis for several years. An IFA test about five years ago produced
mcg-woo
in
Pernicious Anaemia Society
11 months ago
Is it my thyroid?
I have been having b12 injections as somebody told me it sounded like I was suffering with
pernicious
anaemia
but sometimes I still have these symptoms despite the injections Thankyou
I have been having b12 injections as somebody told me it sounded like I was suffering with
pernicious
anaemia
but sometimes I still have these symptoms despite the injections Thankyou
Rach77788
in
Thyroid UK
10 months ago
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