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Sickle-cell anaemia
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How do you cope with the fatigue.
Hi This is my first post after being diagnosed and i am struggling. I was diagnosed with ET Jak2 last December after a 20 month wait from being referred by my GP, i am 62. Was diagnosed with reactive thrombocytosis in 2012 so no idea how long i have had ET. I also had some TIA's in 2018 which they
Hi This is my first post after being diagnosed and i am struggling. I was diagnosed with ET Jak2 last December after a 20 month wait from being referred by my GP, i am 62. Was diagnosed with reactive thrombocytosis in 2012 so no idea how long i have had ET. I also had some TIA's in 2018 which they
Arnoldthecat
in
MPN Voice
1 year ago
Low hemoglobin and Niraparib
It’s 2:29am and am just back from A&E. Had my usual bloods done today and at 10:15pm got a call saying my hemoglobin result were very low and I needed to go asap to hospital. Did so, fantastic treatment and back tomorrow to have a blood transfusion. Has anyone else experienced low hemoglobin whilst on
It’s 2:29am and am just back from A&E. Had my usual bloods done today and at 10:15pm got a call saying my hemoglobin result were very low and I needed to go asap to hospital. Did so, fantastic treatment and back tomorrow to have a blood transfusion. Has anyone else experienced low hemoglobin whilst on
Skyeplus
in
My Ovacome
1 year ago
Iron tabs.help
Hi fellow suffererers, I've just been reading the posts re.Iron supplements. I take two Gentle Iron 20mg every other night, I notice that the first ingredient listed on the bottle is a Bulking Agent(Microcrystalline Cellulose),I was wondering if I can purchase a Gentle Iron without any Bulking Agent,
Hi fellow suffererers, I've just been reading the posts re.Iron supplements. I take two Gentle Iron 20mg every other night, I notice that the first ingredient listed on the bottle is a Bulking Agent(Microcrystalline Cellulose),I was wondering if I can purchase a Gentle Iron without any Bulking Agent,
Whymelord
in
Restless Legs Syndrome
1 year 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.
Musicl
in
Thyroid UK
1 year ago
Does anyone use ‘Active Iron’ in UK?
I searched for ferrous bisglycinate on Amazon UK which came up with Active Iron 25mg. I’ve now received it and found it contains ferrous sulfate 25mg! Now I don’t know if this is the right product or dose. Can anyone help?
I searched for ferrous bisglycinate on Amazon UK which came up with Active Iron 25mg. I’ve now received it and found it contains ferrous sulfate 25mg! Now I don’t know if this is the right product or dose. Can anyone help?
Dires
in
Restless Legs Syndrome
1 year ago
Iron supplements dosage
Is 20mg of gentle iron each night enough? It worked well the first night. What a wonderful relief it was. The second night it did work within 70 mins but returned within 3 hours.. I wonder why it didn't last as long? Would a slow release be better, like ferrous sulphate 325mg? Or will it need to be
Is 20mg of gentle iron each night enough? It worked well the first night. What a wonderful relief it was. The second night it did work within 70 mins but returned within 3 hours.. I wonder why it didn't last as long? Would a slow release be better, like ferrous sulphate 325mg? Or will it need to be
pennygates
in
Restless Legs Syndrome
1 year ago
Minoxidil
As most of you can relate to, I have given up so much in my life due to RLS. Every possible RLS trigger is in fact a trigger for me. I have given up HRT, SSRIs, statins, caffeine, alcohol, spicy foods (I used to put fresh jalapeno peppers on EVERYTHING), sugar, all processed foods, most carbs, and the
As most of you can relate to, I have given up so much in my life due to RLS. Every possible RLS trigger is in fact a trigger for me. I have given up HRT, SSRIs, statins, caffeine, alcohol, spicy foods (I used to put fresh jalapeno peppers on EVERYTHING), sugar, all processed foods, most carbs, and the
Birdland
in
Restless Legs Syndrome
1 year ago
Reply from my local ICB
We fully agree that is incumbent on all local NHS Systems to ensure that they treat their patients with pernicious anaemia effectively and in line with the most recent evidence and guidance. In common with most NHS Systems, NHS Herefordshire & Worcestershire follows national clinical guidance and
We fully agree that is incumbent on all local NHS Systems to ensure that they treat their patients with pernicious anaemia effectively and in line with the most recent evidence and guidance. In common with most NHS Systems, NHS Herefordshire & Worcestershire follows national clinical guidance and
Orchard33
in
Pernicious Anaemia Society
1 year ago
German online Hydroxocobalamin ??
Help! Today I went online to find my ordinary package of 10 "ampullen" B12 Hydroxocobalamin on Amazon.de, but they only had cyano..., and so did Versand Apo, Flensburg Apo, Or..., they did not ship to outside Germany. Help, help, what to do? I cannot handle cyano cobalamin, and here in Denmark, it
Help! Today I went online to find my ordinary package of 10 "ampullen" B12 Hydroxocobalamin on Amazon.de, but they only had cyano..., and so did Versand Apo, Flensburg Apo, Or..., they did not ship to outside Germany. Help, help, what to do? I cannot handle cyano cobalamin, and here in Denmark, it
indywindy
in
Pernicious Anaemia Society
1 year ago
Vits tested
I’ll ask the GP for some iron, I’ve bought a blood test online which is more thorough. Waiting for day 3 of my period as there’s lots of hormones included, just wondered if the b12 or folate are ok? Serum vitamin B12 level 311 ng/L [180 - 640] Serum ferritin level 20 ng/ml [15 - 200] Serum folate
I’ll ask the GP for some iron, I’ve bought a blood test online which is more thorough. Waiting for day 3 of my period as there’s lots of hormones included, just wondered if the b12 or folate are ok? Serum vitamin B12 level 311 ng/L [180 - 640] Serum ferritin level 20 ng/ml [15 - 200] Serum folate
Happytiredbunny
in
Thyroid UK
1 year 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
Low folate and neurological symptoms
Hi All I have low folate at the moment and neurological symptoms. I also have another condition that does affect me neurologically so I'm not sure whether it is that or the folate deficiency that is causing my recent symptoms. I have numbness is my face mainly on one side but also in my back and
Hi All I have low folate at the moment and neurological symptoms. I also have another condition that does affect me neurologically so I'm not sure whether it is that or the folate deficiency that is causing my recent symptoms. I have numbness is my face mainly on one side but also in my back and
Galaxy2
in
Gluten Free Guerrillas
1 year ago
High active b12
Hi everyone just wanted to know is it normal to have high active b12 when on 3 monthly Injections. I have had a private blood test done for multiple thing. Thyroid anemia ect included was active b12 which has come back at >300 pnol/L my last injection was December. Bit worried at how high it is.
Hi everyone just wanted to know is it normal to have high active b12 when on 3 monthly Injections. I have had a private blood test done for multiple thing. Thyroid anemia ect included was active b12 which has come back at >300 pnol/L my last injection was December. Bit worried at how high it is.
alpeec
in
Pernicious Anaemia Society
1 year ago
Blood test for intrinsic factor. How accurate is it?
Have been well for quite a while on my eight weekly B12 injections but had been referred to a gastroenterologist for worsening IBS . He wants to find out why I have B12 deficiency and has requested I have blood test for intrinsic factor. Just wondering how accurate this is as sure I’ve had before and
Have been well for quite a while on my eight weekly B12 injections but had been referred to a gastroenterologist for worsening IBS . He wants to find out why I have B12 deficiency and has requested I have blood test for intrinsic factor. Just wondering how accurate this is as sure I’ve had before and
Mavis15
in
Pernicious Anaemia Society
1 year ago
What does Anaemic mean ?
I am a bit confused about what anaemic means. I have low folate at 3.82 ( the normal range is >3.89) , and red blood cells are 3.7 ( normal range 3.8 -5.8). Haemoglobin is 135 ( normal range 115-160) This is from blood tests done recently at my surgery. Yet at my last clinic visit my haematologist
I am a bit confused about what anaemic means. I have low folate at 3.82 ( the normal range is >3.89) , and red blood cells are 3.7 ( normal range 3.8 -5.8). Haemoglobin is 135 ( normal range 115-160) This is from blood tests done recently at my surgery. Yet at my last clinic visit my haematologist
jodary
in
MPN Voice
1 year ago
Iron deficiency anemia and increased A1C levels
Have those of you who receive phlebotomy for PV experienced elevated A1C levels? I get phlebotomies ever couple of weeks, which as expected, has caused me to be iron deficient and a bit anemic (HGB 11.1, Ferritin <3 ng/mL, Iron 29, Transferrin 6%, UIBC 434, and IBC 463). I am also on 2 aspirin/
Have those of you who receive phlebotomy for PV experienced elevated A1C levels? I get phlebotomies ever couple of weeks, which as expected, has caused me to be iron deficient and a bit anemic (HGB 11.1, Ferritin <3 ng/mL, Iron 29, Transferrin 6%, UIBC 434, and IBC 463). I am also on 2 aspirin/
LIGEBA
in
MPN Voice
1 year ago
Vitamin D
Good afternoon, I have been asked by my gp to take an over the counter B vitamin supplement that contains at least 400mcg of folic acid. I managed to buy Thorne Basic B complex with folate but I am finding the tablets difficult to swallow because of their size. Can anyone recommend another brand of vitamin
Good afternoon, I have been asked by my gp to take an over the counter B vitamin supplement that contains at least 400mcg of folic acid. I managed to buy Thorne Basic B complex with folate but I am finding the tablets difficult to swallow because of their size. Can anyone recommend another brand of vitamin
Pinkisland
in
Thyroid UK
1 year ago
B12 Deficiency
Hi everyone.hope you are all well.Just wanted some help.I have just been diagnosed with b1w deficiency.My results were 54.4.Havent seen the gp yet appointment ovwr 2 weeks away bit have been prescribed folic acid tablets.In first consultation was told if b1w is low may have to have injections.Just wondered
Hi everyone.hope you are all well.Just wanted some help.I have just been diagnosed with b1w deficiency.My results were 54.4.Havent seen the gp yet appointment ovwr 2 weeks away bit have been prescribed folic acid tablets.In first consultation was told if b1w is low may have to have injections.Just wondered
Rachel20
in
Pernicious Anaemia Society
1 year ago
B12 deficiency
Hi everyone. Just a quick question.I found out yesterday that I am b12 deficient.Before being tested an on seeing my private bloods (b12 54) I was told if it comes back low I may have to have injections.But I was prescribed folic acid tablets via txt message. My gp receptionist called and gp wants to
Hi everyone. Just a quick question.I found out yesterday that I am b12 deficient.Before being tested an on seeing my private bloods (b12 54) I was told if it comes back low I may have to have injections.But I was prescribed folic acid tablets via txt message. My gp receptionist called and gp wants to
Rachel20
in
Thyroid UK
1 year ago
Question about methylated vits and Vit B6.
Does anyone know anything about methylated vitamins - I feel worse when I take them, but I’m confused about this as I’ve MTHFR mutations and it’s meant to help! I also worry B6 is part of my neuro issues. My levels stay very high even without supplementing - I have a very good diet (or maybe I can’
Does anyone know anything about methylated vitamins - I feel worse when I take them, but I’m confused about this as I’ve MTHFR mutations and it’s meant to help! I also worry B6 is part of my neuro issues. My levels stay very high even without supplementing - I have a very good diet (or maybe I can’
MrsTuft
in
Pernicious Anaemia Society
1 year ago
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