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Sickle-cell anaemia
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haven’t a clue nurse
good morning everyone. I hope you have all recovered from the recent hot weather. I want to just have a moan please. Having been diagnosed with PA over 40years ago and having monthly injections a new doctor who looked about 12 said my B12 was fine and no more injections needed. I stupidly believed him
good morning everyone. I hope you have all recovered from the recent hot weather. I want to just have a moan please. Having been diagnosed with PA over 40years ago and having monthly injections a new doctor who looked about 12 said my B12 was fine and no more injections needed. I stupidly believed him
Hedgehogs15
in
Pernicious Anaemia Society
2 years ago
starting acalabrutinib while waiting for pirtobrutinib to be FDA approved
Venetoclax stopped working after 3 years and my husband has been on idealisib for several months. It isn’t working. His labs yesterday were terrible. Platelets the lowest they have ever been at 36. White blood count continues to double and it at 113 and hemoglobin is 8.8. A few weeks ago they ran
Venetoclax stopped working after 3 years and my husband has been on idealisib for several months. It isn’t working. His labs yesterday were terrible. Platelets the lowest they have ever been at 36. White blood count continues to double and it at 113 and hemoglobin is 8.8. A few weeks ago they ran
KLWC
in
CLL Support
2 years ago
Stomach issues
Hello everyone, I'm almost 2 years in now with PA diagnosis. I get b12 injection once every 4 weeks. Things have gotten better but I still suffer from gastric problems. I've tried gluten free and other diets but I can't seem to pin down what type of food cause this low level pain in gut sometimes
Hello everyone, I'm almost 2 years in now with PA diagnosis. I get b12 injection once every 4 weeks. Things have gotten better but I still suffer from gastric problems. I've tried gluten free and other diets but I can't seem to pin down what type of food cause this low level pain in gut sometimes
25092
in
Pernicious Anaemia Society
2 years ago
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Comparison can be good for the soul...
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
Timberman
in
COPD Friends
2 years ago
Don't trust everything you read on the internet
Just sharing the NHS website on B12 and folate deficiency anaemia, which reads as per the below. What this says to me is that there is a distinct difference between what actually happens in the real world vs. what we read about on the old internet. It is important to remember that not every article
Just sharing the NHS website on B12 and folate deficiency anaemia, which reads as per the below. What this says to me is that there is a distinct difference between what actually happens in the real world vs. what we read about on the old internet. It is important to remember that not every article
Pickle500
in
Pernicious Anaemia Society
2 years ago
What do these blood test results mean, please.
These are the results of the blood tests I had done earlier this month. My doctor didn't tell me to fast beforehand, but thanks to advice from this site I had fasted for the previous 12 hours. The doctor has now told me that no action needs to be taken, but I note that one of the readings shows that
These are the results of the blood tests I had done earlier this month. My doctor didn't tell me to fast beforehand, but thanks to advice from this site I had fasted for the previous 12 hours. The doctor has now told me that no action needs to be taken, but I note that one of the readings shows that
Desperate100
in
Restless Legs Syndrome
2 years ago
ET transforming?
I was diagnosed with ET around 12 years ago. I was on Hydroxy at first but been on Anagrelide for a few years. I’ve been anaemic for a long time, usually iron tablets bring the hg up again but it’s staying low at the moment. Specialist nurse has just called to say consultant wants to do a bmb to check
I was diagnosed with ET around 12 years ago. I was on Hydroxy at first but been on Anagrelide for a few years. I’ve been anaemic for a long time, usually iron tablets bring the hg up again but it’s staying low at the moment. Specialist nurse has just called to say consultant wants to do a bmb to check
lizzziep
in
MPN Voice
2 years ago
Going through my latest results with my GP, bearing in mind I'd been low on Folate, Ferritin etc for years and been told all good.
GP: [i]Vit D is excellent at 100nmol/L[/i] Me: [i]Yes[/i] GP:[i] Folate is good at 10.8 ug/L (3.4 - 12.2)[/i] Me:[i] Yes[/i] GP: [i]B12 is good at 461 ng/L (211 -911)[/i] Me: [i] Mmn[/i] GP: [i]Ferritin is good at 49 ug/L[/i] Me: [i]No it isn't[/i] Before I could say any more...... GP: [
GP: [i]Vit D is excellent at 100nmol/L[/i] Me: [i]Yes[/i] GP:[i] Folate is good at 10.8 ug/L (3.4 - 12.2)[/i] Me:[i] Yes[/i] GP: [i]B12 is good at 461 ng/L (211 -911)[/i] Me: [i] Mmn[/i] GP: [i]Ferritin is good at 49 ug/L[/i] Me: [i]No it isn't[/i] Before I could say any more...... GP: [
nellie237
in
Thyroid UK
2 years ago
B12 injections
My 24 year old daughter have been getting B12 injections for 3 years and feels so much better. She was also low in Folate. She has gone gluten free but can’t bear to get tests for coeliacs disease as she would have to eat foods with gluten for 6 weeks. She was told by GP that she would need injections
My 24 year old daughter have been getting B12 injections for 3 years and feels so much better. She was also low in Folate. She has gone gluten free but can’t bear to get tests for coeliacs disease as she would have to eat foods with gluten for 6 weeks. She was told by GP that she would need injections
JP57
in
Pernicious Anaemia Society
2 years ago
Medichecks - stop b12 for 2 weeks prior to testing
Hi I want to order my dad a full thyroid testing panel +antibodies and vitamins. However,he has previously had low b12 so was taking intramuscular injections until 1 month ago and is now taking the spray. I notice it says to stop taking any b12 for 2 whole weeks before testing. I wondered whether
Hi I want to order my dad a full thyroid testing panel +antibodies and vitamins. However,he has previously had low b12 so was taking intramuscular injections until 1 month ago and is now taking the spray. I notice it says to stop taking any b12 for 2 whole weeks before testing. I wondered whether
Needleandthread44
in
Thyroid UK
2 years ago
Where can I get getethylcobalamin
I am from Ebonyi State of Nigeria. I have been trying to get methylcobalamin to treat my b12 deficiency but haven't seen it around. Cyanocobalamin has not worked. Please can someone help direct me how to get it. I am going through pains now. Please help .
I am from Ebonyi State of Nigeria. I have been trying to get methylcobalamin to treat my b12 deficiency but haven't seen it around. Cyanocobalamin has not worked. Please can someone help direct me how to get it. I am going through pains now. Please help .
Agala
in
Pernicious Anaemia Society
2 years ago
Supplement advice
Hi recently increased to 100 levo liquid and prescribed folate Please see results below, would you also take b12 as possibly falsely elevated due to low folate or wait until next bloods to see if it has come down? also started taking vitd/vit k, should i take iron for ferritin too? tsh 4.49 (0.27-
Hi recently increased to 100 levo liquid and prescribed folate Please see results below, would you also take b12 as possibly falsely elevated due to low folate or wait until next bloods to see if it has come down? also started taking vitd/vit k, should i take iron for ferritin too? tsh 4.49 (0.27-
Sally1253
in
Thyroid UK
2 years ago
Mega Pain
Wednesday, suddenly, my hip and leg gave way together. I struck the floor with a big bang. Broken hip! I've been in hospital since then and it's going to be a looong recovery!!! Just what I needed. Rather depressed Constance.
Wednesday, suddenly, my hip and leg gave way together. I struck the floor with a big bang. Broken hip! I've been in hospital since then and it's going to be a looong recovery!!! Just what I needed. Rather depressed Constance.
Constance13
in
PMRGCAuk
2 years ago
British National Formulary - Confusion
In the British National Formulary, there is a section for each medicine headed [i]Medicinal Forms[/i]. You can see below that the lists start with the heading [i]All products[/i]. However, this is just plain misleading! The first five entries are all for 12.5 microgram levothyroxine tablets. But
In the British National Formulary, there is a section for each medicine headed [i]Medicinal Forms[/i]. You can see below that the lists start with the heading [i]All products[/i]. However, this is just plain misleading! The first five entries are all for 12.5 microgram levothyroxine tablets. But
helvella
Thyroid UK
in
Thyroid UK
2 years ago
very low ferritin with high iron saturation
I’m CLL , on Imbruvica since December 2022. Just received new labs. ferritin 13.00 ng/ml (normal range 24-336) Iron saturation 41% (normal range It appears contradictory to me. Iron level normal Iron binding capacity normal. Any insight is appreciated. Thanks
I’m CLL , on Imbruvica since December 2022. Just received new labs. ferritin 13.00 ng/ml (normal range 24-336) Iron saturation 41% (normal range It appears contradictory to me. Iron level normal Iron binding capacity normal. Any insight is appreciated. Thanks
mr1971
in
CLL Support
2 years ago
ferrous sulphate giving me terrible stomach cramps
I'm really struggling with stomach cramps from ferrous sulphate.. my gp originally had me on 200g 3 times per day... when my level rose from 17 to 60 he said to stop taking them. Within a week my ferritin had dropped to 38 so I'm back to taking just 200g once a day. Has anyone else tried ferogloblin
I'm really struggling with stomach cramps from ferrous sulphate.. my gp originally had me on 200g 3 times per day... when my level rose from 17 to 60 he said to stop taking them. Within a week my ferritin had dropped to 38 so I'm back to taking just 200g once a day. Has anyone else tried ferogloblin
Lincsangel1
in
Pernicious Anaemia Society
2 years ago
Iron Panel Results
Hi I recently had some NHS iron blood tests done and would welcome any comments., Serum Iron Level 17 (11 -25) Serum Unsaturated Iron Binding Capacity 47umol (44-71) Transferrin Saturation Index 36% ( 20-50) .
Hi I recently had some NHS iron blood tests done and would welcome any comments., Serum Iron Level 17 (11 -25) Serum Unsaturated Iron Binding Capacity 47umol (44-71) Transferrin Saturation Index 36% ( 20-50) .
Sparklingsunshine
in
Thyroid UK
2 years ago
symptoms returning
I started 1,000mg twice weekly injections six weeks ago. I had a resurge of all B12 deficiency symptoms in first 10 days and then they all subsided. However in last few days the burning throbbing sensations in my feet have returned ☹️ And this morning I woke with a headache. Can anyone please let
I started 1,000mg twice weekly injections six weeks ago. I had a resurge of all B12 deficiency symptoms in first 10 days and then they all subsided. However in last few days the burning throbbing sensations in my feet have returned ☹️ And this morning I woke with a headache. Can anyone please let
Hidden
in
Pernicious Anaemia Society
2 years ago
Info request
Hi, I have a couple of questions that would help with managing my father's PA and thought there might be someone out there that has relevant experience. We are UK based. By way of background, my father was diagnosed with PA in 1991 and has lived reasonably happily with 3 monthly B12 injections eversince
Hi, I have a couple of questions that would help with managing my father's PA and thought there might be someone out there that has relevant experience. We are UK based. By way of background, my father was diagnosed with PA in 1991 and has lived reasonably happily with 3 monthly B12 injections eversince
Infohungry
in
Pernicious Anaemia Society
2 years ago
Got to take the wins!
I’m over the moon and I feel the need to share as it’s you lovely people that have encouraged me not to give up and to fight for my health. I went to see a gastroenterologist for the first time today (private). I was ready for an argument because every doctor or consultant I’ve ever seen seemed to
I’m over the moon and I feel the need to share as it’s you lovely people that have encouraged me not to give up and to fight for my health. I went to see a gastroenterologist for the first time today (private). I was ready for an argument because every doctor or consultant I’ve ever seen seemed to
Sparklyjenson
in
Pernicious Anaemia Society
2 years ago
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