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6,821 public posts

Update on “20 years old and Scared”

Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Lc06091 profile image
Lc06091
in MPN Voice

Menopause and Sickle Cell

I am experiencing menopause because, I haven't had a period in many months. But what I notice is that I'm experiencing sickle cell crisis more often. After reading a lot information, I discovered that since the hormones protecting me and now going down, I'm at risk of many things, including stroke, heart
I am experiencing menopause because, I haven't had a period in many months. But what I notice is that I'm experiencing sickle cell crisis more often. After reading a lot information, I discovered that since the hormones protecting me and now going down, I'm at risk of many things, including stroke, heart
Iyalode26 profile image
Iyalode26
in Sickle Cell Society

Concerned about my folate and ferritin levels

Hi everyone... I had my first blood test done in April where my B12 level was 122...( I have serious neurological symptoms.) My folate level was 3.9 and ferritin 17.3. I was given 6 B12 injections over 2 weeks and also ferrous sulphate tablets. I had a further B12 injection 4 week later, and also
Hi everyone... I had my first blood test done in April where my B12 level was 122...( I have serious neurological symptoms.) My folate level was 3.9 and ferritin 17.3. I was given 6 B12 injections over 2 weeks and also ferrous sulphate tablets. I had a further B12 injection 4 week later, and also
Lincsangel profile image
Lincsangel
in Pernicious Anaemia Society
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What do the cell types on a complete blood count mean

https://youtu.be/Xj_yE1pkDko This is a good YouTube video explaining what various blood cell types on a CBC mean. Here in the UK I’ve had to struggle to get copies of my blood counts from GPs and specialists alike. At the moment one of the clinical nurse specialists on the team at SASH ( Redhill) will
https://youtu.be/Xj_yE1pkDko This is a good YouTube video explaining what various blood cell types on a CBC mean. Here in the UK I’ve had to struggle to get copies of my blood counts from GPs and specialists alike. At the moment one of the clinical nurse specialists on the team at SASH ( Redhill) will
Rachelthepotter profile image
Rachelthepotter
in MPN Voice

Ferrous sulphate tablets 200mg - any advice much appreciated

Hi, I had my iron levels checked which came back as ferritin: 8 ug/L and given a prescription for ferrous sulphate 200mg. The box is saying to take 2-3 times a day on an empty stomach, or avoiding certain foods (milk, grains, tea, coffee) I'm pregnant and having extreme nausea and sickness, nibbling
Hi, I had my iron levels checked which came back as ferritin: 8 ug/L and given a prescription for ferrous sulphate 200mg. The box is saying to take 2-3 times a day on an empty stomach, or avoiding certain foods (milk, grains, tea, coffee) I'm pregnant and having extreme nausea and sickness, nibbling
NaomiMay profile image
NaomiMay
in Thyroid UK

How can I improve my Folate, Vit D & Ferritin?

Please can anyone advise me what to take? I have no idea which products are the best ones as it's a minefield with all the different options. Folate 4.38 (range >3.89) Vitamin D 57 nmol/L (range 75-200) and Ferritin is 206.0 ug/L (range 13-150). Thank you very much for your advice. Ann
Please can anyone advise me what to take? I have no idea which products are the best ones as it's a minefield with all the different options. Folate 4.38 (range >3.89) Vitamin D 57 nmol/L (range 75-200) and Ferritin is 206.0 ug/L (range 13-150). Thank you very much for your advice. Ann
sadiethedog1 profile image
sadiethedog1
in Thyroid UK

Folic acid and iron

Hello, I asked my doc if I should take iron and folic acid and he said I could buy otc ones, so I did and took one each. I am feeling a little jittery and a little weak in the legs. Which one of those could be the culprit? I ate some toast and that helped a little. Thank you. So relieved I have a
Hello, I asked my doc if I should take iron and folic acid and he said I could buy otc ones, so I did and took one each. I am feeling a little jittery and a little weak in the legs. Which one of those could be the culprit? I ate some toast and that helped a little. Thank you. So relieved I have a
EllaNore profile image
EllaNore
in Pernicious Anaemia Society

B12 level 364pmol/l two months after loading doses - Low or normal level?

My GP has said that my B12 is normal now and no more treatment is needed after loading doses in April. I did have a B12 level of 80pmol/l before loading doses and intrinsic factor was negative. I eat a varied diet with meat and eggs so shouldn't be low. Iron has historically been very low and folate
My GP has said that my B12 is normal now and no more treatment is needed after loading doses in April. I did have a B12 level of 80pmol/l before loading doses and intrinsic factor was negative. I eat a varied diet with meat and eggs so shouldn't be low. Iron has historically been very low and folate
Rippers101 profile image
Rippers101
in Pernicious Anaemia Society

B12 Test Kits

Could anyone recommend a reliable B12 Test Kit, UK please? Reason I ask is just having changed location and obviously got a new GP, for the first time today I have actually been able to view my notes and blood tests online going back right into the 70,s. I have coeliacs as well as hypothyroid. Last year
Could anyone recommend a reliable B12 Test Kit, UK please? Reason I ask is just having changed location and obviously got a new GP, for the first time today I have actually been able to view my notes and blood tests online going back right into the 70,s. I have coeliacs as well as hypothyroid. Last year
boo16 profile image
boo16
in Pernicious Anaemia Society

Help with B12 and PA diagnosis? In UK

Hi I am trying to figure out if I have a b12 problem still despite the 12 weekly b12 injections I get at the Gp surgery in the UK. My original intrinsic factor around 4 years ago was negative however does this mean I don’t have PA? My b12 levels before injections were quite low hence why Gp started me
Hi I am trying to figure out if I have a b12 problem still despite the 12 weekly b12 injections I get at the Gp surgery in the UK. My original intrinsic factor around 4 years ago was negative however does this mean I don’t have PA? My b12 levels before injections were quite low hence why Gp started me
mistygrey profile image
mistygrey
in Pernicious Anaemia Society

Mystery bloods

Hi I've had problems with my bloods for ages. Probably 5 years now. I've had 3 blood transfusions also a Iron infusion plus B12 injections and still feel rubbish. Dr's can't seem to get to the bottom of my problem. I'm front line Ambulance crew so I'm tired anyway. I've had cameras in both ends to no
Hi I've had problems with my bloods for ages. Probably 5 years now. I've had 3 blood transfusions also a Iron infusion plus B12 injections and still feel rubbish. Dr's can't seem to get to the bottom of my problem. I'm front line Ambulance crew so I'm tired anyway. I've had cameras in both ends to no
Thamesambulance profile image
Thamesambulance
in Pernicious Anaemia Society

PV Haematologist Discussion**UPDATE**

***Firstly I would like to thank everyone’s input all much appreciated. I can confirm that I have an appointment to get bloods done tomorrow at 11:30 and have secured the first appointment available with Dr Drummond MPN specialist on 10th October. On attendance for bloods I will get to the bottom of
***Firstly I would like to thank everyone’s input all much appreciated. I can confirm that I have an appointment to get bloods done tomorrow at 11:30 and have secured the first appointment available with Dr Drummond MPN specialist on 10th October. On attendance for bloods I will get to the bottom of
Hocus58 profile image
Hocus58
in MPN Voice

Has anybody else developed Auto Immune Haemolytic Anaemia with their CLL?

I was diagnosed with CLL just over 3 years ago and gave been on W&W since December last year when I was admitted to hospital with severe anaemia, after many tests and blood transfusions I was diagnosed with Auto Immune Haemolytic Anaemia (AIHA), I was discharged after 2 weeks with medication that included
I was diagnosed with CLL just over 3 years ago and gave been on W&W since December last year when I was admitted to hospital with severe anaemia, after many tests and blood transfusions I was diagnosed with Auto Immune Haemolytic Anaemia (AIHA), I was discharged after 2 weeks with medication that included
Wen_dy profile image
Wen_dy
in CLL Support

Conflict between urine microalbumin and creatinine levels

I am a 52 yrs old man, an engineer from Sudan. I am on Crestor 10mg since 2007 with controlled lipid profile except HDL around 40mg/dl, also on Telmisartan 40mg since 2010 which reduced urine microalbumin from 50 to 26 mcg/l. I am a neither diabetic nor hypertensive. Recently my PB dropped down to 60
I am a 52 yrs old man, an engineer from Sudan. I am on Crestor 10mg since 2007 with controlled lipid profile except HDL around 40mg/dl, also on Telmisartan 40mg since 2010 which reduced urine microalbumin from 50 to 26 mcg/l. I am a neither diabetic nor hypertensive. Recently my PB dropped down to 60
Waise profile image
Waise
in Early CKD Support

Iron panel results - comments please

Attached is an image of my latest results - hopefully this is readable..? Would appreciate some advice...I'm currently supplementing 2 x Solgar Gentle Iron 2mg tablets. Inflammation is up slightly from my thyroid panel a few weeks ago Iron is up slightly from my last test in Jan which was 17.12 TIBC
Attached is an image of my latest results - hopefully this is readable..? Would appreciate some advice...I'm currently supplementing 2 x Solgar Gentle Iron 2mg tablets. Inflammation is up slightly from my thyroid panel a few weeks ago Iron is up slightly from my last test in Jan which was 17.12 TIBC
Molly161018 profile image
Molly161018
in Thyroid UK

Diagnosis update - PV - in limbo

Hi So had my appointment with yet another different haematologist today following my BMB. Still no further forward. Apparently bone marrow aspirate was non cellular so nothing to show from that. Spongy marrow shown an small abnormality but haem consultants think its no conclusive. They have said they
Hi So had my appointment with yet another different haematologist today following my BMB. Still no further forward. Apparently bone marrow aspirate was non cellular so nothing to show from that. Spongy marrow shown an small abnormality but haem consultants think its no conclusive. They have said they
LittleLuna profile image
LittleLuna
in MPN Voice

Adalimumab effect only lasting 10 days

I am on fortnightly injections and find day 1 to 11 I am quite pain free and not fatigued, but then it wears off. Does anyone else experience this?
I am on fortnightly injections and find day 1 to 11 I am quite pain free and not fatigued, but then it wears off. Does anyone else experience this?
vonniesims profile image
vonniesims
in NRAS

Advice on iron

Hi all, so after my iron results a week or so ago and my dr dismissing that i have iron deficiency anemia i decided to self medicate with ferrous fumerate 210mg. Last week i took 3 a day with vitamin c capsules as i read somewhere that that is the adult doseage ( i can't find it now) i have suffered
Hi all, so after my iron results a week or so ago and my dr dismissing that i have iron deficiency anemia i decided to self medicate with ferrous fumerate 210mg. Last week i took 3 a day with vitamin c capsules as i read somewhere that that is the adult doseage ( i can't find it now) i have suffered
catpurple7 profile image
catpurple7
in Thyroid UK

Finally got results

Got letter from GP with results. He says T3 is slightly below the normal range but if I am feeling well this is the level he would be reasonably happy with. Alkaline phosphatase is very slightly raised as is haemoglobin both to be tested again in 3 months. Still waiting the results of the vitamin D test
Got letter from GP with results. He says T3 is slightly below the normal range but if I am feeling well this is the level he would be reasonably happy with. Alkaline phosphatase is very slightly raised as is haemoglobin both to be tested again in 3 months. Still waiting the results of the vitamin D test
annawan profile image
annawan
in Thyroid UK

Latest #s - Is my B12 sublingual 1000mcg daily working?

Hello, My Friends (who are most likely asleep as I write this from Ohio). On June 14th I had updated blood tests done that I specifically requested based on suggestions made on this forum so we could see if maybe my B12 treatment is getting into my cells. My B12 blood serum is close to 1000, but we
Hello, My Friends (who are most likely asleep as I write this from Ohio). On June 14th I had updated blood tests done that I specifically requested based on suggestions made on this forum so we could see if maybe my B12 treatment is getting into my cells. My B12 blood serum is close to 1000, but we
Justme20212954 profile image
Justme20212954
in Pernicious Anaemia Society
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