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Haemolytic anaemia
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Functional B12 deficiency
Hi, I have been around a long time and read every day. I have a hard time understanding what a functional deficiency mean. In my case just a few injections brought my MMA and homocysteine down very quickly. Is that a functional deficiency? Seems like I would understand this by now. I have never
Hi, I have been around a long time and read every day. I have a hard time understanding what a functional deficiency mean. In my case just a few injections brought my MMA and homocysteine down very quickly. Is that a functional deficiency? Seems like I would understand this by now. I have never
EiCa
in
Pernicious Anaemia Society
9 months ago
High iron / low ferritin, advice on B12 and folate levels - results in pics
Hi, I’ve had some great comments and links from members to my last post on my iron panel results. It was suggested that I share my B12 and Folate levels. I’ve puts pics of these in comments first ones from May and second from this month. I want to raise ferritin levels but given iron levels I shouldn
Hi, I’ve had some great comments and links from members to my last post on my iron panel results. It was suggested that I share my B12 and Folate levels. I’ve puts pics of these in comments first ones from May and second from this month. I want to raise ferritin levels but given iron levels I shouldn
Slowrunner1208
in
Thyroid UK
9 months ago
Methylcobalamin vs Hydroxocobalamin ?
Does anyone else find they do better on methylcobalamin than hydroxocobalamin? I've done some major googling but not been able to find out much and would like to ask if anyone has had the same experience as me? I started SI for years with Methylcobalamin and was doing great. When stocks became impossible
Does anyone else find they do better on methylcobalamin than hydroxocobalamin? I've done some major googling but not been able to find out much and would like to ask if anyone has had the same experience as me? I started SI for years with Methylcobalamin and was doing great. When stocks became impossible
pipple
in
Pernicious Anaemia Society
9 months ago
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neutrphils
I started O and V last year I have one week left on Venetoclax. I’ve had sepsis twice and been an in patient to get it sorted . About 5 months ago my neutrophil count dropped below 1 and I started on Filgrastim. I was having one a week at first which helped then they dropped so it was two a week , they
I started O and V last year I have one week left on Venetoclax. I’ve had sepsis twice and been an in patient to get it sorted . About 5 months ago my neutrophil count dropped below 1 and I started on Filgrastim. I was having one a week at first which helped then they dropped so it was two a week , they
jillybird13
in
CLL Support
9 months ago
Intrinsic factor antibody
I'm posting on here as I been advised to. I've just been back to my GP because I had a blood test done the other week for intrinsic factor antibody. I had a result of 3.66 which I thought was positive but my GP just said it's negative ? I had the test done because my vitamins b12 is 211.
I'm posting on here as I been advised to. I've just been back to my GP because I had a blood test done the other week for intrinsic factor antibody. I had a result of 3.66 which I thought was positive but my GP just said it's negative ? I had the test done because my vitamins b12 is 211.
suzybear
in
Pernicious Anaemia Society
9 months ago
b12 purchase
Hi I was treated by GP for low B12 for a year but once my levels were midway on “normal range” the injections were discontinued and I struggle to find ways to boost my intake orally. I have just purchased Hydroxocobalamin online but am unsure if the dosage is similar to that I was previously prescribed
Hi I was treated by GP for low B12 for a year but once my levels were midway on “normal range” the injections were discontinued and I struggle to find ways to boost my intake orally. I have just purchased Hydroxocobalamin online but am unsure if the dosage is similar to that I was previously prescribed
Maximus2222
in
Pernicious Anaemia Society
9 months ago
HCT above average
Hey, could any one advise if HCT can be dropped / managed with venesection ? I've noticed on a random blood test from GP few months ago my hematocrit was 0.55 I assume this is considered high. In addition I do regular full blood tests in a local hospital and I never noticed Hematocrit on results. Not
Hey, could any one advise if HCT can be dropped / managed with venesection ? I've noticed on a random blood test from GP few months ago my hematocrit was 0.55 I assume this is considered high. In addition I do regular full blood tests in a local hospital and I never noticed Hematocrit on results. Not
kamiilos
in
MPN Voice
9 months ago
Can anyone recommend a good haematologist or Neurologist for pernicious anaemia
Hi can anyone recommend a haematologist or neurologist who has a good understanding of pernicious anaemia anywhere in England? (Needs to be NHS as GP said they won't act on any recommendation from a private doctor). Many of my neurological symptoms, although much improved, never went away completely
Hi can anyone recommend a haematologist or neurologist who has a good understanding of pernicious anaemia anywhere in England? (Needs to be NHS as GP said they won't act on any recommendation from a private doctor). Many of my neurological symptoms, although much improved, never went away completely
Rett713
in
Pernicious Anaemia Society
6 months ago
Could my iron supplement be causing weight gain?
I have been gaining weight despite being very careful in what I eat since starting my gentle iron supplement. A google search has come up with very mixed results re this. Not sure what to believe. Any advice?
I have been gaining weight despite being very careful in what I eat since starting my gentle iron supplement. A google search has come up with very mixed results re this. Not sure what to believe. Any advice?
Hectorsmum2
in
Restless Legs Syndrome
9 months ago
So apparently I'm normal...but I'm definitely perplexed!
Having twice weekly injections since my loading dose in mid December as I still have lots of neuro symptoms. Feeling generally better, but have woken up with migraines the last 4 mornings after they were really improving, and felt v sick this morning 🙄 Every day is an unknown! Had about 30/40 different
Having twice weekly injections since my loading dose in mid December as I still have lots of neuro symptoms. Feeling generally better, but have woken up with migraines the last 4 mornings after they were really improving, and felt v sick this morning 🙄 Every day is an unknown! Had about 30/40 different
Myoldcat
in
Pernicious Anaemia Society
6 months ago
Just diagnosed with autoimmune atrophic gastritis with intestinal metaplasia
I assume this is the root cause of my pernicious anemia? I have an appointment this week to discuss with GI, but want to go into the appointment educated. Does anyone else have this? Any treatment for this? I’m already on EOD (for last two weeks) B12 shots and multivitamins. Thanks in advance for your
I assume this is the root cause of my pernicious anemia? I have an appointment this week to discuss with GI, but want to go into the appointment educated. Does anyone else have this? Any treatment for this? I’m already on EOD (for last two weeks) B12 shots and multivitamins. Thanks in advance for your
ReallyWondering
in
Pernicious Anaemia Society
6 months ago
switch from jakafi (RUX) to Ojjara/momelotinib
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
Bainbridge
in
MPN Voice
9 months ago
Second opinion for my daughter (ruling out thyroid, opinion on vitamins)
17 year old daughter has complained of headaches and fatigue for years. Chalked it up to teenager, pandemic, and irregular sleeping patterns. As all those things resolved, and the headaches and fatigue didn't, I ordered bloodwork to rule out Hashis and Hypo; and hopefully pinpoint a treatment to get
17 year old daughter has complained of headaches and fatigue for years. Chalked it up to teenager, pandemic, and irregular sleeping patterns. As all those things resolved, and the headaches and fatigue didn't, I ordered bloodwork to rule out Hashis and Hypo; and hopefully pinpoint a treatment to get
FallingInReverse
in
Thyroid UK
9 months ago
Pegasus and hematocrit spike
Hi just wondering if anyone else has experienced this. I started peg 2 months ago 45mg every 2 weeks all seemed to go well HCT and platlets lowered, platlets were never majorly high were around 480 I have HCT target of 43 after 2 sets of bloods Guys seemed happy so far, 3 weeks ago HCT 41.9 platlets
Hi just wondering if anyone else has experienced this. I started peg 2 months ago 45mg every 2 weeks all seemed to go well HCT and platlets lowered, platlets were never majorly high were around 480 I have HCT target of 43 after 2 sets of bloods Guys seemed happy so far, 3 weeks ago HCT 41.9 platlets
Cityreach
in
MPN Voice
9 months ago
Iron Blood Test Results
Hi i’m wondering if anyone could advise on my iron blood test. I had a recent thyroid test which showed Ferritin at 69.1 ug/L (range 30-150). This was through Thriva. I have since tested with Medicheck and my ferritin seems to have reduced. Am just wondering if there was a way I could increase ferritin
Hi i’m wondering if anyone could advise on my iron blood test. I had a recent thyroid test which showed Ferritin at 69.1 ug/L (range 30-150). This was through Thriva. I have since tested with Medicheck and my ferritin seems to have reduced. Am just wondering if there was a way I could increase ferritin
Llobs
in
Thyroid UK
9 months ago
Some Potentially Alarming Changes to Blood
Hi All, CLL Diagnosed less than a year ago. 13 Q del. I am/was hoping for a slow progression of this disease, but my recent blood work is worrying me. I'll meet with my doctor (CLL specialist at U of Chicago) next week, but I value the insight of those who have been dealing with this just as much if
Hi All, CLL Diagnosed less than a year ago. 13 Q del. I am/was hoping for a slow progression of this disease, but my recent blood work is worrying me. I'll meet with my doctor (CLL specialist at U of Chicago) next week, but I value the insight of those who have been dealing with this just as much if
Horsechestnut
in
CLL Support
9 months ago
Update.
Latest blood results Hb - 119, WBC - 5.9. Plts- 293. I am starting to feel a bit better of late. The steroids I am on has have improved my haemoglobin and I am reducing the dosage over 4 weeks. I am to stay on folic acid tablets for the mean time. The letter I received states that my haematologist cannot
Latest blood results Hb - 119, WBC - 5.9. Plts- 293. I am starting to feel a bit better of late. The steroids I am on has have improved my haemoglobin and I am reducing the dosage over 4 weeks. I am to stay on folic acid tablets for the mean time. The letter I received states that my haematologist cannot
Jacksc06
in
CLL Support
9 months ago
Grandmother, 88 being denied B12 injections
This group has always been very supportive, particularly when I began my B12 deficiency ordeal. I was hoping I could get some advice on a very specific issue I am having with my maternal grandmother, who has had Pernicious Anaemia for as long as I can remember and likely where I inherited mine from.
This group has always been very supportive, particularly when I began my B12 deficiency ordeal. I was hoping I could get some advice on a very specific issue I am having with my maternal grandmother, who has had Pernicious Anaemia for as long as I can remember and likely where I inherited mine from.
TMur1990
in
Pernicious Anaemia Society
9 months ago
Anyone else with consistently rising neutrophils?
My neutrophils have steadily risen from 67 to 78.2% over one year while my lymphocytes have decreased from 17.2 to 12.1%. My overall WBC went from 9 to 11.4. I’m going to bring this up at my next appointment, but thought I’d see if anyone here has had similar numbers. Platelets are at 731. Hematocrit
My neutrophils have steadily risen from 67 to 78.2% over one year while my lymphocytes have decreased from 17.2 to 12.1%. My overall WBC went from 9 to 11.4. I’m going to bring this up at my next appointment, but thought I’d see if anyone here has had similar numbers. Platelets are at 731. Hematocrit
Lena70
in
MPN Voice
9 months ago
No improvement to tiredness after B12 injections
I have been having B12 injections since being diagnosed with pernicious anaemia 18 years ago. I never feel an improvement in energy levels and tiredness after an injection.When my dad had his injections for P.A. decades ago he would always say he could feel when his injection was due because of increased
I have been having B12 injections since being diagnosed with pernicious anaemia 18 years ago. I never feel an improvement in energy levels and tiredness after an injection.When my dad had his injections for P.A. decades ago he would always say he could feel when his injection was due because of increased
Suesue246
in
Pernicious Anaemia Society
9 months ago
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