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My mom just got diagnosed with CLL at 59 - we have questions - thank you for all the support on my previous post!
1. We live in Southern California - does anyone know a great specialist near by? 2. Her ABSOLUTE LYMPHOCYTES are 9533 - does anyone have similar numbers but they have increased 24% from a month ago when they were at 7732?? Is this alarming? 3. Her IGHV test came back at 6.87% - what does that mean?
1. We live in Southern California - does anyone know a great specialist near by? 2. Her ABSOLUTE LYMPHOCYTES are 9533 - does anyone have similar numbers but they have increased 24% from a month ago when they were at 7732?? Is this alarming? 3. Her IGHV test came back at 6.87% - what does that mean?
Chickenoodlesoup
in
CLL Support
2 months ago
new to RLS
hi, I’ve been trying to understand what RLS is and what treatments to have. The neurologist tells me I have RLS, my symptoms are tingling sensation, sometime pins and needles in both feet and calves. I have it all day, everyday. I notice it when resting and don’t when standing and walking. My B12
hi, I’ve been trying to understand what RLS is and what treatments to have. The neurologist tells me I have RLS, my symptoms are tingling sensation, sometime pins and needles in both feet and calves. I have it all day, everyday. I notice it when resting and don’t when standing and walking. My B12
Rosecup
in
Restless Legs Syndrome
2 months ago
folate dropping
I have been injecting since July 2023, thanks to you all, I knew to check my ferritin when I felt something else was off…since no doctor thought it necessary. It was 14. Now I am on iron supplements. My folate has always been >24. However, since starting the iron, my folate has dropped to 15 (still
I have been injecting since July 2023, thanks to you all, I knew to check my ferritin when I felt something else was off…since no doctor thought it necessary. It was 14. Now I am on iron supplements. My folate has always been >24. However, since starting the iron, my folate has dropped to 15 (still
MuppDog
in
Pernicious Anaemia Society
2 months ago
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low haemoglobin.
. 🎄 I have had pernicious
anaemia
for over 40 years now. My HB is never more than 9.7. And my other red blood cell results are always slightly abnormal .. The GPs always seem to consider this is to be expected as I have PA. Is this acceptable and is there any way of rectifying my low levels?
. 🎄 I have had pernicious
anaemia
for over 40 years now. My HB is never more than 9.7. And my other red blood cell results are always slightly abnormal .. The GPs always seem to consider this is to be expected as I have PA. Is this acceptable and is there any way of rectifying my low levels?
Yingtong22
in
Pernicious Anaemia Society
5 months ago
Back again!!
I have been on here a few times and Jools and Sue saved my sanity! Other's have also been so kind so, thank you...again! I do have another question which I'm sure Jools and Sue can help me with. The 20 mcg Buprenorphine patch has helped my RLS hugely though I know it's lurking but I can now sleep which
I have been on here a few times and Jools and Sue saved my sanity! Other's have also been so kind so, thank you...again! I do have another question which I'm sure Jools and Sue can help me with. The 20 mcg Buprenorphine patch has helped my RLS hugely though I know it's lurking but I can now sleep which
Danni54
in
Restless Legs Syndrome
2 months ago
late delivery of MMH bloods again
Last week there were problems delivering my bloods in a timely manner so the
anaemia
test could not be done. They did send me another pack out which I did Monday. Did the bloods posted them in priority post box as someone suggested.
Last week there were problems delivering my bloods in a timely manner so the
anaemia
test could not be done. They did send me another pack out which I did Monday. Did the bloods posted them in priority post box as someone suggested.
Auders
in
Thyroid UK
2 months ago
Blood results
Hi all. Just had my blood test results back, which I’m told are all normal. Just thought I’d ask if anyone can confirm they are in fact normal, as I certainly don’t feel normal 😂 I’ll set it out June 23 v. March 24 for comparison. June 23 Serum folate 14.7 ug/L Serum ferritin 16 ug/L Serum B12
Hi all. Just had my blood test results back, which I’m told are all normal. Just thought I’d ask if anyone can confirm they are in fact normal, as I certainly don’t feel normal 😂 I’ll set it out June 23 v. March 24 for comparison. June 23 Serum folate 14.7 ug/L Serum ferritin 16 ug/L Serum B12
MLJ2024
in
Pernicious Anaemia Society
2 months ago
vitamin B12 injection
I am SO exhausted and want to see if I’m lacking B12 (I’m vegetarian) please can you let me know a good but cheap company to use. Thank you
I am SO exhausted and want to see if I’m lacking B12 (I’m vegetarian) please can you let me know a good but cheap company to use. Thank you
sidneymark70
in
Thyroid UK
2 months ago
Confused about iron infusion and low ferritin.
Am I reading it wrong when Dr. Winkelmann recommends infusion if ferritin is 50 – 75 mcg/L but iron tablets if ferritin is below 50 mcg/L or lower? Gibbel
Am I reading it wrong when Dr. Winkelmann recommends infusion if ferritin is 50 – 75 mcg/L but iron tablets if ferritin is below 50 mcg/L or lower? Gibbel
Gibbel
in
Restless Legs Syndrome
2 months ago
where to get b12 injections to self administer?
hello, I am an American living in the UK. I was previously being treated in the USA for my pernicious anemia with once monthly, self injections. In the UK I have been met with absolute apathy and disregard for my condition. I am genuinely just tired of fighting for my care, and don’t have the strength
hello, I am an American living in the UK. I was previously being treated in the USA for my pernicious anemia with once monthly, self injections. In the UK I have been met with absolute apathy and disregard for my condition. I am genuinely just tired of fighting for my care, and don’t have the strength
Popcornlover1
in
Pernicious Anaemia Society
2 months ago
folic acid
Is there a good resource showing the need for good folate levels alongside B12 injections? I’m on 4-weekly B12 injections but my latest serum folate blood test is at the very low end of the range, but technically in range according to the NHS so ‘no action required’. It’s gone down while I’ve been
Is there a good resource showing the need for good folate levels alongside B12 injections? I’m on 4-weekly B12 injections but my latest serum folate blood test is at the very low end of the range, but technically in range according to the NHS so ‘no action required’. It’s gone down while I’ve been
Pa234aw
in
Pernicious Anaemia Society
2 months ago
New results for my Daughter 3 months on
She is undiagnosed, we are trying to rule a great many issues out (UA,
Anaemia
, Pernicious
Anaemia
, autoimmune and others).
Questions
B12
has dropped massively. She's been supplementing 500mcg daily. Medichecks testing info says to stop B12 two weeks beforehand so she did this.
She is undiagnosed, we are trying to rule a great many issues out (UA,
Anaemia
, Pernicious
Anaemia
, autoimmune and others).
Questions
B12
has dropped massively. She's been supplementing 500mcg daily. Medichecks testing info says to stop B12 two weeks beforehand so she did this.
Sneedle
in
Thyroid UK
11 months ago
Help! Have I messed up
I have just had a telephone consultation with a GP hoping for help with the symptoms I have been experiencing. I tried to point him in the direction of the relevant guidelines for treating B12 deficiency, he said that he was familiar with the NICE CKS as he deals with B12 all the time and I m not anaemic
I have just had a telephone consultation with a GP hoping for help with the symptoms I have been experiencing. I tried to point him in the direction of the relevant guidelines for treating B12 deficiency, he said that he was familiar with the NICE CKS as he deals with B12 all the time and I m not anaemic
SpringerMom
in
Pernicious Anaemia Society
2 months ago
B12 Injections and Folic Acid question
Hi! I am starting my course of B12 injections on Monday and my GP also gave me a prescription for folic acid tablets too but said not to start them until my injections. I just wondered, did anyone else take folic acid with their injections and when did you start? On day one of the injections? My prescription
Hi! I am starting my course of B12 injections on Monday and my GP also gave me a prescription for folic acid tablets too but said not to start them until my injections. I just wondered, did anyone else take folic acid with their injections and when did you start? On day one of the injections? My prescription
Hidden
in
Pernicious Anaemia Society
2 months ago
Help sought with iron panel, please
I took an Advanced Thyroid panel with Medichecks on 9th February, and my ferritin came back much lower than optimal, to the point where their GP commented that it could be increased: Ferritin 51.4 (30-264) 9.15% through range I followed the advice I've seen posted here over the years and took a
I took an Advanced Thyroid panel with Medichecks on 9th February, and my ferritin came back much lower than optimal, to the point where their GP commented that it could be increased: Ferritin 51.4 (30-264) 9.15% through range I followed the advice I've seen posted here over the years and took a
Thalia56
in
Thyroid UK
2 months ago
Besremi
Is Besremi used for ET or just PV? I was thought to have PV due to being Jak2+ & having elevated hemoglobin/hematocrit levels. When I had a bone marrow biopsy it was pretty much normal so I was then said to be MPN-U. I am presently on HU 500mg every other day. My hematocrit & hemoglobin are now
Is Besremi used for ET or just PV? I was thought to have PV due to being Jak2+ & having elevated hemoglobin/hematocrit levels. When I had a bone marrow biopsy it was pretty much normal so I was then said to be MPN-U. I am presently on HU 500mg every other day. My hematocrit & hemoglobin are now
ERei
in
MPN Voice
2 months ago
PNH - blood test
I just received this PNH test result and was wondering if anyone knows what it was testing for. I don't see my doctor until next week and I am curious. Thanks, Jack INTERPRETATION Flow Cytometry analysis did not detect RBC and WBC with PNH-associated phenotype. RBC, Granulocytes and Monocytes show
I just received this PNH test result and was wondering if anyone knows what it was testing for. I don't see my doctor until next week and I am curious. Thanks, Jack INTERPRETATION Flow Cytometry analysis did not detect RBC and WBC with PNH-associated phenotype. RBC, Granulocytes and Monocytes show
rcusher
in
CLL Support
2 months ago
High thyroid TPO antibodies, 14 year old.
Hi all, my daughter has high thyroid antibodies and they are getting higher . Pretty sure they are at 117 currently. All other testing is ok. She is on iron supplements for previously low iron and heavy periods. Should I be concerned, what should I do. The doctor doesn’t seem to worried. Thanks
Hi all, my daughter has high thyroid antibodies and they are getting higher . Pretty sure they are at 117 currently. All other testing is ok. She is on iron supplements for previously low iron and heavy periods. Should I be concerned, what should I do. The doctor doesn’t seem to worried. Thanks
Kettl
in
Thyroid UK
2 months ago
Timings of NDT and iron supplements
Hi all, I'm struggling to maintain ferritin levels whilst also trying to adhere to the timings of iron supplements around my NDT and other vitamins. My ferritin is rarely higher than 20s (in the last ten years the highest it has been was 52 just once). I've been on NDT for a year and am gradually
Hi all, I'm struggling to maintain ferritin levels whilst also trying to adhere to the timings of iron supplements around my NDT and other vitamins. My ferritin is rarely higher than 20s (in the last ten years the highest it has been was 52 just once). I've been on NDT for a year and am gradually
Maldeerum
in
Thyroid UK
2 months ago
Bit old fashioned...
I discovered that a castor oil pack really helps with knee pain. It's horrible sticky oil, but it works topically (for me at least). I have bad memories of this stuff from my childhood. Any hint of sickness and out came the bottle. I would not recommend injesting it! 🤮 it's better than the deep heat
I discovered that a castor oil pack really helps with knee pain. It's horrible sticky oil, but it works topically (for me at least). I have bad memories of this stuff from my childhood. Any hint of sickness and out came the bottle. I would not recommend injesting it! 🤮 it's better than the deep heat
Blackberrywine
in
NRAS
2 months ago
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