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Pernicious anaemia
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Clunking, Fading and Sleep
This is written from the perspective of having experienced life long B12 deficiency and injecting 5+- times a day consistently for the last 5 weeks. 1 mg methylcobalamin and .25 mg hydroxocobalamin with 6 mg adenosylcobalamin SL. Which lead to consistent improvement weekly. I am well aware that I or
This is written from the perspective of having experienced life long B12 deficiency and injecting 5+- times a day consistently for the last 5 weeks. 1 mg methylcobalamin and .25 mg hydroxocobalamin with 6 mg adenosylcobalamin SL. Which lead to consistent improvement weekly. I am well aware that I or
WIZARD6787
in
Pernicious Anaemia Society
7 months ago
Stiff feet up to ankles
I have b12 injections every 3 months for
pernicious
anaemia
which I was diagnosed with a couple of years ago. I had breathlessness issues and gastic issues. However my feet have felt stiff and tight before that. I also get more clumsy when my injection is due.
I have b12 injections every 3 months for
pernicious
anaemia
which I was diagnosed with a couple of years ago. I had breathlessness issues and gastic issues. However my feet have felt stiff and tight before that. I also get more clumsy when my injection is due.
Kangarooiom
in
Pernicious Anaemia Society
1 year ago
PV - Folic Acid and Vit D
Hi Please excuse if this has been asked before, I’m sure it has but can’t find the post 😬 I have PV and had blood done at Dr recently and was told I needed to take folic acid and Vit D. I take HU which has recently been reduced by 1 tablet a week and last bloods were HCT 38, Hb 13.4, WBC 7.6
Hi Please excuse if this has been asked before, I’m sure it has but can’t find the post 😬 I have PV and had blood done at Dr recently and was told I needed to take folic acid and Vit D. I take HU which has recently been reduced by 1 tablet a week and last bloods were HCT 38, Hb 13.4, WBC 7.6
Hocus58
in
MPN Voice
7 months ago
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Hyperparathyroidism
This is my first post on here. I wonder if anyone has had a blood test for Hyperparathyroidism who was taking a PPI? I am on Lansoprazole and I wondered if I should stop it before the blood test? I would be very grateful for any feedback.
This is my first post on here. I wonder if anyone has had a blood test for Hyperparathyroidism who was taking a PPI? I am on Lansoprazole and I wondered if I should stop it before the blood test? I would be very grateful for any feedback.
ChristineK
in
Thyroid UK
1 year ago
Blood result and raised MCV
Hi everyone. I had a recent blood test as I've been supplementing with gentle iron, general A-Z vits and B12 since the spring. I particularly wanted to check up on my iron/ferritin status. I've never had a positive diagnosis of PA, or even of B12 deficiency as my levels have always been 'in range'.
Hi everyone. I had a recent blood test as I've been supplementing with gentle iron, general A-Z vits and B12 since the spring. I particularly wanted to check up on my iron/ferritin status. I've never had a positive diagnosis of PA, or even of B12 deficiency as my levels have always been 'in range'.
KBird01
in
Pernicious Anaemia Society
7 months ago
one last question ( hopefully)
I have finally managed to get an appointment with my GP where I hope to convince him to give me B12 injections more often that once every 8 weeks and I never had a loading doses so am hoping for that too. I hope I can get him to do some tests, like size shape and number of red blood cells, intrinsic
I have finally managed to get an appointment with my GP where I hope to convince him to give me B12 injections more often that once every 8 weeks and I never had a loading doses so am hoping for that too. I hope I can get him to do some tests, like size shape and number of red blood cells, intrinsic
totallyFrustrated
in
Pernicious Anaemia Society
7 months ago
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
7 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
7 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
7 months ago
Tracking your B12 changes after injections? (Please share if so)
Hey everyone. In November 2022 I tested positive for parietal cell antibodies with a B12 deficiency. I started loading doses of B12 with weekly injections (of 1000 mcg/mL cyanocobalomine) over 1 month, then monthly injections since then. A friend had a similar situation. After she started injections
Hey everyone. In November 2022 I tested positive for parietal cell antibodies with a B12 deficiency. I started loading doses of B12 with weekly injections (of 1000 mcg/mL cyanocobalomine) over 1 month, then monthly injections since then. A friend had a similar situation. After she started injections
Pante
in
Pernicious Anaemia Society
1 year ago
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
8 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
8 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
8 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
8 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
8 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
8 months ago
Pernicious Anaemia, Hashimoto's, Connective Tissue disorder, Migraine
Hi, I was recently diagnosed with this condition. I also have Hashimoto's thyroiditis (diagnosed in my thirties). Any advice on supplementing B12 injections would be much appreciated.
Hi, I was recently diagnosed with this condition. I also have Hashimoto's thyroiditis (diagnosed in my thirties). Any advice on supplementing B12 injections would be much appreciated.
skylark25
in
Thyroid UK
1 year ago
Top of Range Active B12
Is it possible to have
pernicious
anaemia
, low intrinsic levels, with high active B12? I have terrible foot and lower leg neuropathy that has ruined my life so I have to be sure I'm safe in ruling B12 out. I'm also hypothyroid and have struggled for years with that medication for that.
Is it possible to have
pernicious
anaemia
, low intrinsic levels, with high active B12? I have terrible foot and lower leg neuropathy that has ruined my life so I have to be sure I'm safe in ruling B12 out. I'm also hypothyroid and have struggled for years with that medication for that.
FancyPants54
in
Pernicious Anaemia Society
1 year 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
8 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
8 months ago
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