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Sickle-cell anaemia
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Monofer is making me feel crap
Hi, I had an iron infusion 10 days ago as I had Feratin at 10 and low iron transfusions. I am sure in long run it will help me but Monofer is making my life bit of hell. Not slept one night in the past 10 days without waking up in the middle of the night. My sleep quality has been crap. (a) has anyone
Hi, I had an iron infusion 10 days ago as I had Feratin at 10 and low iron transfusions. I am sure in long run it will help me but Monofer is making my life bit of hell. Not slept one night in the past 10 days without waking up in the middle of the night. My sleep quality has been crap. (a) has anyone
abhishekjoshi9
in
Pernicious Anaemia Society
2 years ago
Bone marrow transplant possibility and leriglitazone update
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
JShough
in
AMN EASIER
1 year ago
Start of B12 treatment but can I do exercise?
Really don’t know how to managed my deficiency until my B12 levels improve. Looking for advice on whether I can keep doing sports? I was diagnosed with B12 deficiency on Monday. I have digestive issues (which I’ve learnt can affect absorption) and family history of pernicious anaemia but have been
Really don’t know how to managed my deficiency until my B12 levels improve. Looking for advice on whether I can keep doing sports? I was diagnosed with B12 deficiency on Monday. I have digestive issues (which I’ve learnt can affect absorption) and family history of pernicious anaemia but have been
Foodie101
in
Pernicious Anaemia Society
1 year ago
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Help please to understand my recent tests and what supplements I should be taking.
Recent blood tests following increase 8 weeks ago of levothyroxine to 100mcg daily from 100mcg 3 x a week, 50mcg 4 x a week. Could someone please help me to determine what supplements I should be taking. GP has suggested 1000 units of Vit d. I think my ferritin and possibly folate looks low also.
Recent blood tests following increase 8 weeks ago of levothyroxine to 100mcg daily from 100mcg 3 x a week, 50mcg 4 x a week. Could someone please help me to determine what supplements I should be taking. GP has suggested 1000 units of Vit d. I think my ferritin and possibly folate looks low also.
Jacksonnz
in
Thyroid UK
1 year ago
Daughter's blood results
Merry Christmas everyone 🎄⛄Following on from my post about my daughter's Vitamin D and Folate deficiency diagnosis, attached are my daughter's blood test results. I wanted a copy to check if they'd checked her B12 as I was concerned about her starting Folic acid if deficient in B12 . I don't see anything
Merry Christmas everyone 🎄⛄Following on from my post about my daughter's Vitamin D and Folate deficiency diagnosis, attached are my daughter's blood test results. I wanted a copy to check if they'd checked her B12 as I was concerned about her starting Folic acid if deficient in B12 . I don't see anything
Ritchie1268
in
Pernicious Anaemia Society
2 years ago
magnesium glycinate and pregnancy
Knowing that lots of you take magnesium glycinate, have any of you taken it safely during pregnancy? Slightly off topic as I’m enquiring for my daughter who does not have a thyroid problem but is in the first trimester of pregnancy and is only sleeping about three hours a night. I suggested magnesium
Knowing that lots of you take magnesium glycinate, have any of you taken it safely during pregnancy? Slightly off topic as I’m enquiring for my daughter who does not have a thyroid problem but is in the first trimester of pregnancy and is only sleeping about three hours a night. I suggested magnesium
Bearo
in
Thyroid UK
2 years ago
Intrinsic Factorn Antibodies test
Hi, My B12, folate, ferritin and vit d were all really low a few months ago, i've had ferritin infusions, folate and D tablets and am injecting B12 a couple times a week. I am feeling somewhat better and my bloods are all fine now. My original doctor said i had pernicious Anaemia, i've had other autoimmune
Hi, My B12, folate, ferritin and vit d were all really low a few months ago, i've had ferritin infusions, folate and D tablets and am injecting B12 a couple times a week. I am feeling somewhat better and my bloods are all fine now. My original doctor said i had pernicious Anaemia, i've had other autoimmune
fuzzletoff
in
Pernicious Anaemia Society
2 years ago
‘World's 1st' fetal brain stem cell transplant effective in Parkinson's disease: study
CHA University Bundang Medical Center (CBMC) said on Monday that its researchers proved the safety and effectiveness of dopamine neural precursor cells derived from fetal mesenchymal stem cells transplanted into patients with Parkinson's disease "for the first time in the world." Cell replacement therapy
CHA University Bundang Medical Center (CBMC) said on Monday that its researchers proved the safety and effectiveness of dopamine neural precursor cells derived from fetal mesenchymal stem cells transplanted into patients with Parkinson's disease "for the first time in the world." Cell replacement therapy
Baron1
in
Cure Parkinson's
1 year ago
Are my iron levels ok?
Hi. At last I have managed to get a blood test done for iron levels. Could you, Sue Johnson, please comment on them? I feel the ferritin is quite high, which should be good, but am not sure about the other results. Ferritin: 176.5. Ug/ L 10.0-291.0 Serum Iron 16.1. Umol/L. 9.0-30.4 Transferrin
Hi. At last I have managed to get a blood test done for iron levels. Could you, Sue Johnson, please comment on them? I feel the ferritin is quite high, which should be good, but am not sure about the other results. Ferritin: 176.5. Ug/ L 10.0-291.0 Serum Iron 16.1. Umol/L. 9.0-30.4 Transferrin
Ruffabug
in
Restless Legs Syndrome
1 year ago
information on test results
Haemoglobin. 153 g/L. 120-150 g/L. Total White cell 7.94. 10*9/L. 4.00-10.00. Platelet
Haemoglobin. 153 g/L. 120-150 g/L. Total White cell 7.94. 10*9/L. 4.00-10.00. Platelet
Spoticus
in
Pernicious Anaemia Society
2 years ago
Gut is now at metaplasia stage and it's irreversible. Need advice, friends.
Hello, It has been some time since I last wrote so I will refresh your memories a bit. In a nutshell, I was diagnosed with autoimmune atrophic gastritis two years ago which caused PA and b12 deficiency. I take 1000 mcg B12 cyanocobalamin once daily but sometimes twice if I'm feeling poorly at the end
Hello, It has been some time since I last wrote so I will refresh your memories a bit. In a nutshell, I was diagnosed with autoimmune atrophic gastritis two years ago which caused PA and b12 deficiency. I take 1000 mcg B12 cyanocobalamin once daily but sometimes twice if I'm feeling poorly at the end
Hidden
in
Pernicious Anaemia Society
1 year ago
Vitamin D, Folate but not B12?
Not been about much lately due to getting busy with the new service I set up, so I hope everyone is well. A few will remember the hassle I had around 18 months ago getting my daughter's GP to get her 'Active' B12 checked, it never happened. She's continued to struggle feeling tired etc etc. Her new
Not been about much lately due to getting busy with the new service I set up, so I hope everyone is well. A few will remember the hassle I had around 18 months ago getting my daughter's GP to get her 'Active' B12 checked, it never happened. She's continued to struggle feeling tired etc etc. Her new
Ritchie1268
in
Pernicious Anaemia Society
2 years ago
test results, any advice please .
just received my daughters test results? Haemoglobin. 153 g/L. 120-150 g/L Total White cell 7.94. 10*9/L. 4.00-10.00 Platelet count. 472. 10*9/L. 150-410 Haematocrit 0.454 0.36-0.46 RBC count. 5.05. 10*12/L. 380-480. 10*12/L MCV. 89.9 fL. 83-101. 00fL
just received my daughters test results? Haemoglobin. 153 g/L. 120-150 g/L Total White cell 7.94. 10*9/L. 4.00-10.00 Platelet count. 472. 10*9/L. 150-410 Haematocrit 0.454 0.36-0.46 RBC count. 5.05. 10*12/L. 380-480. 10*12/L MCV. 89.9 fL. 83-101. 00fL
Spoticus
in
Thyroid UK
2 years ago
Self-injecting 2 ml EOD.
Hi Family…. Has anyone self-injected 2 ml EOD, subcutaneous? If so has there been any adverse reactions, I currently inject 1ml EOD, for about 6 months. PA brought on-by years of taking PPI’s for GERD. In the beginning I really didn’t know what I was doing I tried, B12, strips, sprays, tablets, patches
Hi Family…. Has anyone self-injected 2 ml EOD, subcutaneous? If so has there been any adverse reactions, I currently inject 1ml EOD, for about 6 months. PA brought on-by years of taking PPI’s for GERD. In the beginning I really didn’t know what I was doing I tried, B12, strips, sprays, tablets, patches
RisingOne
in
Pernicious Anaemia Society
1 year ago
Ferritin and Transferrin Saturation (TSAT) numbers
Good afternoon, My GP has prescribed Pregabalin Teva 25 mg Capsules Hard I take two a day two to three hours before going to bed and app. one hour before going to bed I have been on Pregabalin for eight days I have also been prescribed Ferrous Sulfate Tablets 200 mg I take one a day on an empty stomach
Good afternoon, My GP has prescribed Pregabalin Teva 25 mg Capsules Hard I take two a day two to three hours before going to bed and app. one hour before going to bed I have been on Pregabalin for eight days I have also been prescribed Ferrous Sulfate Tablets 200 mg I take one a day on an empty stomach
williamghenry
in
Restless Legs Syndrome
1 year ago
Patient Power's MOST-READ ARTICLEs for 2022
MOST-READ ARTICLE What Does My Lymphocyte Count Mean? If you’ve had a complete blood count blood test and are wondering what the results for the white blood cells — or lymphocytes — mean, you’re not alone. LEARN MORE https://www.patientpower.info/navigating-cancer/what-does-my-lymphocyte-count-mean
MOST-READ ARTICLE What Does My Lymphocyte Count Mean? If you’ve had a complete blood count blood test and are wondering what the results for the white blood cells — or lymphocytes — mean, you’re not alone. LEARN MORE https://www.patientpower.info/navigating-cancer/what-does-my-lymphocyte-count-mean
lankisterguy
Volunteer
in
CLL Support
2 years ago
Below range Active B12, Increasing serum B12, Low folate
Hi My health board (in Scotland) doesn’t use the Active B12 test so they are unwilling to accept the Medichecks test I had done which showed a slightly below range result - 36pmol (37.5 - 188) They have retested my serum B12 and folate: Serum B12 315ng/L (187-883) Folate 2.7 (3-20) My serum
Hi My health board (in Scotland) doesn’t use the Active B12 test so they are unwilling to accept the Medichecks test I had done which showed a slightly below range result - 36pmol (37.5 - 188) They have retested my serum B12 and folate: Serum B12 315ng/L (187-883) Folate 2.7 (3-20) My serum
GW1000
in
Pernicious Anaemia Society
2 years ago
Newbie to this group (hello!), iron overload and possible PA question :/
Hello all, I'm new to this group, I have autoimmune thyroid disease, but along with it have been looking at sorting out my iron and B12, so would like to share this here, apologies for the long post... I'm new to dealing with PA, please be gentle :) Recently I've been feeling pretty crap - the usual
Hello all, I'm new to this group, I have autoimmune thyroid disease, but along with it have been looking at sorting out my iron and B12, so would like to share this here, apologies for the long post... I'm new to dealing with PA, please be gentle :) Recently I've been feeling pretty crap - the usual
Ebx_design
in
Pernicious Anaemia Society
1 year ago
elevated liver enzymes
Does anyone else have experience of raised liver enzymes whilst takin steroids? My recent blood test showed a GGT ( gamma gluts ultrasound transferease) reading of 340. A normal reading should be under 30. It has not been elevated in former blood tests. I am taking 12 mgs defazacort per day. Equivalent
Does anyone else have experience of raised liver enzymes whilst takin steroids? My recent blood test showed a GGT ( gamma gluts ultrasound transferease) reading of 340. A normal reading should be under 30. It has not been elevated in former blood tests. I am taking 12 mgs defazacort per day. Equivalent
bBarnabus
in
PMRGCAuk
2 years ago
Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica - a very useful reference to show your doctor
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429 This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice
PMRpro
Ambassador
in
PMRGCAuk
1 year ago
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