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Recently Diagnosed
Hi There, I have recently been diagnosed with PV, I am JAk2 V617F positive 61% and my blood cells are all within normal levels, even my hematocrit. 3 years ago I suffered with portal and splenic vein thrombosis and have been on appixaban ever since. A few months before the thrombosis appeared blood
Hi There, I have recently been diagnosed with PV, I am JAk2 V617F positive 61% and my blood cells are all within normal levels, even my hematocrit. 3 years ago I suffered with portal and splenic vein thrombosis and have been on appixaban ever since. A few months before the thrombosis appeared blood
DarcyShepp
in
MPN Voice
5 months ago
I think Tramadol has caused my RLS
Hi everyone, I'm new here and I'd love some advice, please. I have MS - I was diagnosed in the late 90s. I'm lucky that it hasn't affected me badly (yet), but I do suffer from pretty severe nerve pain. I managed it with Co-Codamol 30/500 for years. I'd been prescribed 8 per day but rarely took more
Hi everyone, I'm new here and I'd love some advice, please. I have MS - I was diagnosed in the late 90s. I'm lucky that it hasn't affected me badly (yet), but I do suffer from pretty severe nerve pain. I managed it with Co-Codamol 30/500 for years. I'd been prescribed 8 per day but rarely took more
Princegwyn
in
Restless Legs Syndrome
5 months ago
Grandfather FIT test result of 200...
Pretty worried right now.My grandad is 86. Has type 2 diabetes and so has regular bloods. In a blood test about 3 months ago, the GP noticed his iron was low. They re tested it again and it was falling dramatically. He feels tired and breathless also. He did a FIT stool test and it came back as 200.
Pretty worried right now.My grandad is 86. Has type 2 diabetes and so has regular bloods. In a blood test about 3 months ago, the GP noticed his iron was low. They re tested it again and it was falling dramatically. He feels tired and breathless also. He did a FIT stool test and it came back as 200.
Fenella34
in
Colon Cancer Connected
5 months ago
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ferritin level!??
My ferritin level has come back at - 43.5 ug/L (20.0 - 130.0) Folate - 11.7 ug/L (2.0. - 18.7) B12 This is so frustrating as I eat lots of fresh red meat and also supplement with iron 😩 B12 - 736 (197 - 771) Can anyone advice….?? Many thanks in advance 😞
My ferritin level has come back at - 43.5 ug/L (20.0 - 130.0) Folate - 11.7 ug/L (2.0. - 18.7) B12 This is so frustrating as I eat lots of fresh red meat and also supplement with iron 😩 B12 - 736 (197 - 771) Can anyone advice….?? Many thanks in advance 😞
ThyroidObsessed
in
Thyroid UK
5 months ago
High Folate with PA terrible GP
Hello everyone, Im afraid this might be a little long, but i hope someone can help me. It has been a long and upsetting morning. It started with a 630am ER visit for excruciating groin/hip pain for past 6 days and very hard to walk. Anyway, I'm confused. Some of my tests came back surprising. I
Hello everyone, Im afraid this might be a little long, but i hope someone can help me. It has been a long and upsetting morning. It started with a 630am ER visit for excruciating groin/hip pain for past 6 days and very hard to walk. Anyway, I'm confused. Some of my tests came back surprising. I
EllaNore
in
Pernicious Anaemia Society
5 months ago
Best treatment for Post PV/MF ?
I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was diagnosed with pv in 2017. 2 years of hydroxy, then ruxolitinib at 20mg a day. A bmb in december showed progression to mf. Grade 2 fibrosis. The rux has recently been increased to 30mg a day along with
I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was diagnosed with pv in 2017. 2 years of hydroxy, then ruxolitinib at 20mg a day. A bmb in december showed progression to mf. Grade 2 fibrosis. The rux has recently been increased to 30mg a day along with
MCW22
in
MPN Voice
5 months ago
Maltofer
Hi -- just curious if anyone is using Maltofer to raise their ferritin? It's chief benefit is that it has fewer gastrointestinal side effects than the ferrous iron salts. Thanks.
Hi -- just curious if anyone is using Maltofer to raise their ferritin? It's chief benefit is that it has fewer gastrointestinal side effects than the ferrous iron salts. Thanks.
Whippetmama
in
Restless Legs Syndrome
5 months ago
Ferritin and Iron levels
After an infusion three months ago my ferritin has increased from 18 to 202 but my iron is still only 11 a slight increase from 8 My RBD is still in the red at 15.2% range is up to 14.8% . Coud someone help with these results please ?
After an infusion three months ago my ferritin has increased from 18 to 202 but my iron is still only 11 a slight increase from 8 My RBD is still in the red at 15.2% range is up to 14.8% . Coud someone help with these results please ?
davina70
in
Pernicious Anaemia Society
5 months ago
Armour Thyroid for over 20 years
I have been taking Armour thyroid since 2000... Have had my current Dr for at least 20. When I had COVID last time (about 2 years ago .. very mild case) I noticed my TSH was up (over 3...very high for me and on Armour). I mentioned it to my Dr and she suggested waiting, it could be temporary. In the
I have been taking Armour thyroid since 2000... Have had my current Dr for at least 20. When I had COVID last time (about 2 years ago .. very mild case) I noticed my TSH was up (over 3...very high for me and on Armour). I mentioned it to my Dr and she suggested waiting, it could be temporary. In the
NanaV54
in
Thyroid UK
5 months ago
new test results and dose review advice.
Hello, I was started on levothyroxine by my GP on the 8th of January following test results that showed hypothyroidism. I had had symptoms for a while snd thought they were perimenopause, but my TSH levels were tested previously and came back ok (as shown by my July 2023 test results) T4 wasn’t tested
Hello, I was started on levothyroxine by my GP on the 8th of January following test results that showed hypothyroidism. I had had symptoms for a while snd thought they were perimenopause, but my TSH levels were tested previously and came back ok (as shown by my July 2023 test results) T4 wasn’t tested
Phoenix_24
in
Thyroid UK
5 months ago
Blood results interpretation required
Hi there, I need help interpreting my results. My symptoms are brain fog, joint aches, lack of energy and anxiety. These have been with me all my life. They got better in 2022 when I started combination therapy. However, I do not think I have reached my optimum (whatever that is) because these symptoms
Hi there, I need help interpreting my results. My symptoms are brain fog, joint aches, lack of energy and anxiety. These have been with me all my life. They got better in 2022 when I started combination therapy. However, I do not think I have reached my optimum (whatever that is) because these symptoms
Carlax
in
Thyroid UK
5 months ago
I need some help with this
I am having the most painful but weird cramping. It is only a night and it is getting worse, not better. Yesterday I had them and I did not have dialysis because we infiltrated the fistula, AGAIN. We thought it was the iron I was taking, but I stopped that last week. These cramps are not in my calves
I am having the most painful but weird cramping. It is only a night and it is getting worse, not better. Yesterday I had them and I did not have dialysis because we infiltrated the fistula, AGAIN. We thought it was the iron I was taking, but I stopped that last week. These cramps are not in my calves
Bassetmommer
in
Kidney Dialysis
5 months ago
Masked pv?
Hi all, latest appointment today with my local hospital and back to the revolving door of doctors.The good news platelets still great 298 liver 's be behaving!!! eyes responding to drops. So problems fatigue and stomach upsets. So we are repeating iron tests and B12 apparently they are a bit low (
Hi all, latest appointment today with my local hospital and back to the revolving door of doctors.The good news platelets still great 298 liver 's be behaving!!! eyes responding to drops. So problems fatigue and stomach upsets. So we are repeating iron tests and B12 apparently they are a bit low (
Spanelmad
in
MPN Voice
5 months ago
NAC with ferritin deficiency or PA
Hi all. Just thought I’d pop in and ask my new friends if they know of any reason NAC shouldn’t be taken with iron tablets or B12, or whether NAC could actually have a negative effect on ferritin/B12 levels. Can’t find any info on this, so here I am 😊 I am awaiting latest blood results, so don’t
Hi all. Just thought I’d pop in and ask my new friends if they know of any reason NAC shouldn’t be taken with iron tablets or B12, or whether NAC could actually have a negative effect on ferritin/B12 levels. Can’t find any info on this, so here I am 😊 I am awaiting latest blood results, so don’t
MLJ2024
in
Pernicious Anaemia Society
5 months ago
Elevated iron levels-advice please
Hi, Would just like a bit of advice. After years of infertility and miscarriages, we were referred for fertility testing. We have been refused for IVF on NHS due to diminished ovarian reserve which is pretty low for my age. I am 42 years old. I have always been aware that my haemaglobin has been on
Hi, Would just like a bit of advice. After years of infertility and miscarriages, we were referred for fertility testing. We have been refused for IVF on NHS due to diminished ovarian reserve which is pretty low for my age. I am 42 years old. I have always been aware that my haemaglobin has been on
Believeinmiracles82
in
Haemochromatosis Society UK
5 months ago
Iron plus zinc better for iron deficiency anemia
reading about zinc I came across the following article. I mean it focuses on chronic kidney desease but I found this gem of info stating that zinc combined with iron is better than iron alone. Now I'm not iron deficient. But I thought this might be interesting for those who are. Beware too much zinc
reading about zinc I came across the following article. I mean it focuses on chronic kidney desease but I found this gem of info stating that zinc combined with iron is better than iron alone. Now I'm not iron deficient. But I thought this might be interesting for those who are. Beware too much zinc
B12life
in
Pernicious Anaemia Society
5 months ago
What to ask Endo?
Hi all Sorry this is quite long. I'm looking for some advice about next steps and what to ask my Endo when I see him next week. Background: I spoke to my GP in March 22 because I was exhausted and anxious and people I barely knew were commenting how awful I looked! She ordered a load of tests which
Hi all Sorry this is quite long. I'm looking for some advice about next steps and what to ask my Endo when I see him next week. Background: I spoke to my GP in March 22 because I was exhausted and anxious and people I barely knew were commenting how awful I looked! She ordered a load of tests which
Sesameseed82
in
Thyroid UK
5 months ago
Results Advice
Hi looking for some advice on my recent blood results please. I followed all protocols for testing as per usual. My iron seems to have gone down so I’m back to taking two supplements a day as I dropped it to one after my last results in November. Been feeling tired a lot with not much energy but I’
Hi looking for some advice on my recent blood results please. I followed all protocols for testing as per usual. My iron seems to have gone down so I’m back to taking two supplements a day as I dropped it to one after my last results in November. Been feeling tired a lot with not much energy but I’
PrincessAnnie
in
Thyroid UK
5 months ago
Heartened to know I am not alone in the struggles caused by pramipexole
I have had RLS and PLMD as long as I can remember. I’m sure all of those nights I struggled with symptoms as a child that were brushed off as growing pains…RLS. My mom suffers mildly. Unfortunately, both of my daughters also have many challenges that began as teens. What I’ve been through is so complex
I have had RLS and PLMD as long as I can remember. I’m sure all of those nights I struggled with symptoms as a child that were brushed off as growing pains…RLS. My mom suffers mildly. Unfortunately, both of my daughters also have many challenges that began as teens. What I’ve been through is so complex
SleeplessinNC
in
Restless Legs Syndrome
5 months ago
Blood work
Hey I've been diagnosed with hypothyroidism for just over a year now, but recent bloods have been taken for blood count and iron etc my haemoglobin is 122 ( 122-165 ) Ferritin 18 (13-250 ) B12 - 437 ( 197-771 ) Folate 4.7 ( 3.9-26.8 ) although under blood work it says folate comment: folate maybe falsly
Hey I've been diagnosed with hypothyroidism for just over a year now, but recent bloods have been taken for blood count and iron etc my haemoglobin is 122 ( 122-165 ) Ferritin 18 (13-250 ) B12 - 437 ( 197-771 ) Folate 4.7 ( 3.9-26.8 ) although under blood work it says folate comment: folate maybe falsly
Jojomcc
in
Thyroid UK
5 months ago
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