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ET JAK2 positive
Hello all, This is my first post although I joined the forum about two years ago. Not sure why I haven’t posted sooner and not sure exactly where to start. I would like to say thank you to everyone here for all of the invaluable information and sharing your stories and experiences with MPN’s. I read
Hello all, This is my first post although I joined the forum about two years ago. Not sure why I haven’t posted sooner and not sure exactly where to start. I would like to say thank you to everyone here for all of the invaluable information and sharing your stories and experiences with MPN’s. I read
pjm03
in
MPN Voice
2 years ago
New bloods - confused about iron study outcomes
Good afternoon Fabulous people – hoping for your wisdom again. I had new bloods on 10th June (8 week check on levo dosage). I knew that the NHS bloods wouldn’t test FT3 and FT4 (even though they were specifically requested on the form by the GP). I ordered a medichecks test to test these privately.
Good afternoon Fabulous people – hoping for your wisdom again. I had new bloods on 10th June (8 week check on levo dosage). I knew that the NHS bloods wouldn’t test FT3 and FT4 (even though they were specifically requested on the form by the GP). I ordered a medichecks test to test these privately.
AtemiM
in
Thyroid UK
2 years ago
Beetroot?
I have been sold concentrated beetroot pills cos they are supposed to help with my
anaemia
and heart. I was assured they have no bad side effects. Have not taken any yet. I am told i will see the benefits in a couple of months.
I have been sold concentrated beetroot pills cos they are supposed to help with my
anaemia
and heart. I was assured they have no bad side effects. Have not taken any yet. I am told i will see the benefits in a couple of months.
GrannyE
in
AF Association
2 years ago
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Iron infusion
At that time I had slight
anaemia
with HG of 11, low iron, transferrin saturation and ferritin. Two months ago I began to feel dreadful again, with physical and mental exhaustion, headaches, tinnitus and constantly feeling cold, plus a sore mouth.
At that time I had slight
anaemia
with HG of 11, low iron, transferrin saturation and ferritin. Two months ago I began to feel dreadful again, with physical and mental exhaustion, headaches, tinnitus and constantly feeling cold, plus a sore mouth.
Ophelia1
in
LUPUS UK
2 years ago
Husband’s recent iron panel labs show dire ferritin but other levels appear to say he shouldn’t supplement. Unless I’ve misunderstood
We requested an iron panel as it was clear his GP wasn’t going to offer even though husband falls asleep at the drop of a hat. I’m glad we asked because his ferritin is very low having fallen from his usual 50-90 over the years 26/07/22 Ferritin 19.2 (22 -322) Serum iron 21.4 (14 - 31.3) 42.77%
We requested an iron panel as it was clear his GP wasn’t going to offer even though husband falls asleep at the drop of a hat. I’m glad we asked because his ferritin is very low having fallen from his usual 50-90 over the years 26/07/22 Ferritin 19.2 (22 -322) Serum iron 21.4 (14 - 31.3) 42.77%
Noelnoel
in
Thyroid UK
2 years ago
Should I be taking an iron supplement?
Hi all, I tested my iron level and I got: Iron 13 μmol/l (11-32) Transferrin 2.2 g/l (2.0-3.6) Transferrin saturation 23.5% (16-45) In 2020 I had the following: Serum iron 20.9 μmol/l (13-32) Serum transferrin 2.17 g/l (2.00-3.60) Serum unsaturated binding capacity 49μmol/l (45-70) Saturation
Hi all, I tested my iron level and I got: Iron 13 μmol/l (11-32) Transferrin 2.2 g/l (2.0-3.6) Transferrin saturation 23.5% (16-45) In 2020 I had the following: Serum iron 20.9 μmol/l (13-32) Serum transferrin 2.17 g/l (2.00-3.60) Serum unsaturated binding capacity 49μmol/l (45-70) Saturation
WhyAmISoTired
in
Thyroid UK
2 years ago
Trying to get a diagnosis of PA via a GP
Good evening Due to feeling unwell with loss of appetite, feeling of being full, chronic fatigue, shortness of breath, impaired vision with floating black dots - i could go on! and already knowing i was anaemic, I asked the GP for a bit b12 blood test, this came back as normal but I have low serum
Good evening Due to feeling unwell with loss of appetite, feeling of being full, chronic fatigue, shortness of breath, impaired vision with floating black dots - i could go on! and already knowing i was anaemic, I asked the GP for a bit b12 blood test, this came back as normal but I have low serum
4daughters1971
in
Pernicious Anaemia Society
2 years ago
Pernicious anaemia
After being diagnosed with pernicious
anaemia
over 40 years ago after a big stomach operation I was told I had pernicious
anaemia
. Had B12 ever since up to 5 years ago when this young doctor told me it had gone away.
After being diagnosed with pernicious
anaemia
over 40 years ago after a big stomach operation I was told I had pernicious
anaemia
. Had B12 ever since up to 5 years ago when this young doctor told me it had gone away.
Hedgehogs15
in
Pernicious Anaemia Society
2 years ago
Besremi and Zyrtec
Hi.........I'm going through the process of getting approved for Besremi. My not specialist hem is worried about me taking Zyrtec, She told me that I need to stop taking once I start Besremi. I take it for bad allergies and my PV JAk2+. Anyone been told this or are there folks still taking Zyrtec?
Hi.........I'm going through the process of getting approved for Besremi. My not specialist hem is worried about me taking Zyrtec, She told me that I need to stop taking once I start Besremi. I take it for bad allergies and my PV JAk2+. Anyone been told this or are there folks still taking Zyrtec?
nyelynndesigns
in
MPN Voice
2 years ago
Buprenorphine - what are the pluses?
I'm currently on 1800 mgs of Gabapentin, which, after a brief reprise, is failing to suppress my PLMs sufficiently. They wake me up and I continue to experience them until they're dismissed by walking up and down. I have just been issued with a Buprenorphine patch. I'm acquainted with the various side
I'm currently on 1800 mgs of Gabapentin, which, after a brief reprise, is failing to suppress my PLMs sufficiently. They wake me up and I continue to experience them until they're dismissed by walking up and down. I have just been issued with a Buprenorphine patch. I'm acquainted with the various side
dickJones
in
Restless Legs Syndrome
2 years ago
How to lose weight with fibromyalgia
, been diagnosed with fibromyalgia,
anaemia
at one stage, a fibroid, chronic daily headaches, migraines, a weird undiagnosed abdominal wall issue and for the last couple of years a back/hip problem.
, been diagnosed with fibromyalgia,
anaemia
at one stage, a fibroid, chronic daily headaches, migraines, a weird undiagnosed abdominal wall issue and for the last couple of years a back/hip problem.
Purpledelphinium
in
Fibromyalgia Action UK
2 years ago
Spring booster
Hi all. So I have had a text to say that I can have the spring booster. I've had 4 boosters due to my immune. So is the spring classed as the 4th or is the spring one the 5th. Just a bit confused. TIA
Hi all. So I have had a text to say that I can have the spring booster. I've had 4 boosters due to my immune. So is the spring classed as the 4th or is the spring one the 5th. Just a bit confused. TIA
Bull5160
in
LUPUS UK
2 years ago
Lab Work Preparation
This isn’t really regarding B12 but you all seem to be so helpful and more research based than other groups, so I’m hoping you can help me. I am having routine bloodwork done in a couple weeks for my hematologist appointment. I’m regards to folate and iron, do I need to stop those for any length of times
This isn’t really regarding B12 but you all seem to be so helpful and more research based than other groups, so I’m hoping you can help me. I am having routine bloodwork done in a couple weeks for my hematologist appointment. I’m regards to folate and iron, do I need to stop those for any length of times
lambuth_eagle
in
Pernicious Anaemia Society
2 years ago
RLS restlessness vs electric shock feeling
I had a question for everyone…. My RLS has the restlessness feeling but it also has the electric jolt feeling which is worse and it’s def more aggravating than the urge to move itself as anyone who I have spoke to knows I am a difficult case and my doctor and I are trying everything. I have recently
I had a question for everyone…. My RLS has the restlessness feeling but it also has the electric jolt feeling which is worse and it’s def more aggravating than the urge to move itself as anyone who I have spoke to knows I am a difficult case and my doctor and I are trying everything. I have recently
RC723
in
Restless Legs Syndrome
2 years ago
Update
Just thought I’d post about this…..not sure how commonplace it is for the antiplatelet meds causing
anaemia
. Something for you all to just consider. Great news, have bought a treadmill from Facebook marketplace and walked for 30mins this afternoon.
Just thought I’d post about this…..not sure how commonplace it is for the antiplatelet meds causing
anaemia
. Something for you all to just consider. Great news, have bought a treadmill from Facebook marketplace and walked for 30mins this afternoon.
simplysal
in
British Heart Foundation
2 years ago
Can you take too many sublinguals?
So I know that you can't take too much b12 but I keep wimping out of self injecting and need to get myself through the few weeks before my next injection so I'm going to trial taking lots of sublinguals and see if that helps, I think they do help a tiny bit but no way near enough. Anyone tried this
So I know that you can't take too much b12 but I keep wimping out of self injecting and need to get myself through the few weeks before my next injection so I'm going to trial taking lots of sublinguals and see if that helps, I think they do help a tiny bit but no way near enough. Anyone tried this
Clare184
in
Pernicious Anaemia Society
2 years ago
could someone check my test results please to explain them to me?
.*** Please note anything that alters red bloodcell turnover will make HbA1c results unreliableeg
anaemia
, B12 deficiency, renal failure, recentblood transfusion *** Liver function tests Serum total protein level 69 g/L [60.0 - 80.0]Serum globulin level 27 g/LSerum bilirubin level 7 umol/L [0.0 -
.*** Please note anything that alters red bloodcell turnover will make HbA1c results unreliableeg
anaemia
, B12 deficiency, renal failure, recentblood transfusion *** Liver function tests Serum total protein level 69 g/L [60.0 - 80.0]Serum globulin level 27 g/LSerum bilirubin level 7 umol/L [0.0 -
Milsean
in
Pernicious Anaemia Society
2 years ago
Evusheld results
I thought it might be helpful to share the antibody results of my Evusheld injections. I was first diagnosed with CLL in 2013 and started Ibrutinib in February 2020. I received my first Evusheld injections on February 1, 2022 and 2nd injections on March 3, 2022. Covid antibody tests were done in
I thought it might be helpful to share the antibody results of my Evusheld injections. I was first diagnosed with CLL in 2013 and started Ibrutinib in February 2020. I received my first Evusheld injections on February 1, 2022 and 2nd injections on March 3, 2022. Covid antibody tests were done in
rbg4410
in
CLL Support
2 years ago
Advice on latest bloods
Hi i would really appreciate some advice on my latest bloods, and whether I should supplement B12 and folate and maybe iron based on them. Bloods taken as per protocol recommended on here. Currently taking 75 mcg thyroxine and 2 x half grains of ERFA T4 - 17.4 (range 12-22) T3 - 4 (range 3.1-6.8
Hi i would really appreciate some advice on my latest bloods, and whether I should supplement B12 and folate and maybe iron based on them. Bloods taken as per protocol recommended on here. Currently taking 75 mcg thyroxine and 2 x half grains of ERFA T4 - 17.4 (range 12-22) T3 - 4 (range 3.1-6.8
Spangle15
in
Thyroid UK
2 years ago
Does everyone with PV have high platelets?
Right now I only have slightly elevated RBC, hematocrit, and hemoglobin but all my other cell counts are normal.
Right now I only have slightly elevated RBC, hematocrit, and hemoglobin but all my other cell counts are normal.
Kdfotigr
in
MPN Voice
2 years ago
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