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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
INTRINSIC FACTOR ANTIBODY TEST . Has any member with P.A. had to have more than one IFAB test to get a positive reading ?
Is it a fact that the Intrinsic Factor antibodies come and go continually ? Or do they not appear when the patient has had P.A. untreated for a long period ,and the antibodies have “done their job “ and destroyed the parietal cells ?
Is it a fact that the Intrinsic Factor antibodies come and go continually ? Or do they not appear when the patient has had P.A. untreated for a long period ,and the antibodies have “done their job “ and destroyed the parietal cells ?
wedgewood
in
Pernicious Anaemia Society
2 years ago
SUPPORT THE PERNICIOUS ANAEMIA SOCIETY AT NO COST TO YOURSELF !
If buying from Amazon , use Amazon smile.U.K. and choose The pernicious
Anaemia
Society as your charity . Amazon will then donate to the PAS . “ Every little helps “
If buying from Amazon , use Amazon smile.U.K. and choose The pernicious
Anaemia
Society as your charity . Amazon will then donate to the PAS . “ Every little helps “
wedgewood
in
Pernicious Anaemia Society
2 years ago
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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
Supplements for iron
I have had the following blood tests: Serum ferritin level 41 ug/L [10.0 - 322.0] Serum folate level 23.5 ug/L [5.4 - 24.0] Should I take some iron tablets to boost my ferritin levels and if so what dosage should I be taking?
I have had the following blood tests: Serum ferritin level 41 ug/L [10.0 - 322.0] Serum folate level 23.5 ug/L [5.4 - 24.0] Should I take some iron tablets to boost my ferritin levels and if so what dosage should I be taking?
Luci20
in
Thyroid UK
2 years ago
Aplastic anaemia? Managing stress and uncertainty- free online course, starts Aug 18
" - Feedback from Lesley's previous aplastic
anaemia
support sessions.
" - Feedback from Lesley's previous aplastic
anaemia
support sessions.
DC_motheranddaughter
Partner
in
DC Action
2 years ago
levothyroxine/Teva/mannitol
hi everyone.. It’s just come to my notice that Levothyroxine which I’ve been taking for about 25 years or so contains “mannitol “ As I have very bad restless legs for about the same amount of years and getting worse … I was wondering how long mannitol has been in levothyroxine ? Also.. would it affect
hi everyone.. It’s just come to my notice that Levothyroxine which I’ve been taking for about 25 years or so contains “mannitol “ As I have very bad restless legs for about the same amount of years and getting worse … I was wondering how long mannitol has been in levothyroxine ? Also.. would it affect
janland
in
Thyroid UK
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
RLS/PLMs and treatment
I would like to share information concerning my health particularly in relation to RLS/PLMs hoping that others with the condition may be helped. My experience of RLS could go back to my teens when, whilst seated and playing cards with my brother, we would both be moving our legs quite rapidly, toes
I would like to share information concerning my health particularly in relation to RLS/PLMs hoping that others with the condition may be helped. My experience of RLS could go back to my teens when, whilst seated and playing cards with my brother, we would both be moving our legs quite rapidly, toes
Eccleston
in
Restless Legs Syndrome
2 years ago
Haemolytic anaemia
Does anyone know anything about haemolytic
anaemia
? (It's the result of red blood cells not functioning properly).
Does anyone know anything about haemolytic
anaemia
? (It's the result of red blood cells not functioning properly).
Joetcalr
in
MPN Voice
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
Frightening, weird symptoms
What I read was that restless legs is dopamine and
anaemia
related... but antidepressants make RLS worse! The other things that can make rsl worse is antacids- so I've read.
What I read was that restless legs is dopamine and
anaemia
related... but antidepressants make RLS worse! The other things that can make rsl worse is antacids- so I've read.
saj01
in
Fibromyalgia Action UK
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
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
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