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Pernicious anaemia
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A few symptoms that just won’t give!!
Hi all :) I hope you are all doing well! Here in the US we are gearing up to celebrate Thanksgiving. I just want you all to know how thankful I am for this community and the endless amount of information it provides. You have all had an impact on my life and for that I am thankful. I have been injecting
Hi all :) I hope you are all doing well! Here in the US we are gearing up to celebrate Thanksgiving. I just want you all to know how thankful I am for this community and the endless amount of information it provides. You have all had an impact on my life and for that I am thankful. I have been injecting
Ctadds1
in
Pernicious Anaemia Society
2 years ago
Bone marrow test
I have been anemic and have had two iron infusions. In s few days, I will be having a bone marrow extraction. I'm a bit nervous about it. What can this test reveal?
I have been anemic and have had two iron infusions. In s few days, I will be having a bone marrow extraction. I'm a bit nervous about it. What can this test reveal?
Hidden
in
Restless Legs Syndrome
2 years ago
High ferritin levels
Good evening one and all - and in advance I want to wish you all a happy new year, one that is healthier for us all. My serum ferritin level has gone up even further and I just wondered if the PMR/Pred etc has anything to do with it? I should add that I do have an abnormal inherited gene (a carrier
Good evening one and all - and in advance I want to wish you all a happy new year, one that is healthier for us all. My serum ferritin level has gone up even further and I just wondered if the PMR/Pred etc has anything to do with it? I should add that I do have an abnormal inherited gene (a carrier
Doraflora
in
PMRGCAuk
2 years ago
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Iron Infusion
I am having my first Iron Infusion on 15 November. Recent Ferritin blood tests revealed my level was 50. I asked my GP about having an Iron Infusion and she was happy to organise this for me. This will be done at my local Hospital (I live in a country town) by a Doctor. I have been feeling very tired
I am having my first Iron Infusion on 15 November. Recent Ferritin blood tests revealed my level was 50. I asked my GP about having an Iron Infusion and she was happy to organise this for me. This will be done at my local Hospital (I live in a country town) by a Doctor. I have been feeling very tired
Jules1953
in
Restless Legs Syndrome
2 years ago
Low iron first time in years despite supps
Hello, I just had an iron panel done as it turned out my iron is 4% of range.... 55 (50-170)! Ferritin better at 30% range, but still not great. I used to take Floradix and my iron was over midrange on it, then took 60 mg Actiferol (ferric pyrophosphate) in powder from the pharmacy for couple of months
Hello, I just had an iron panel done as it turned out my iron is 4% of range.... 55 (50-170)! Ferritin better at 30% range, but still not great. I used to take Floradix and my iron was over midrange on it, then took 60 mg Actiferol (ferric pyrophosphate) in powder from the pharmacy for couple of months
Incoguto
in
Thyroid UK
2 years ago
False reading?
It’s the second time she’s been deficient, my sister has
pernicious
anaemia
so she was checked for intrinsic factor but it was negative. I’m reluctant to take her off them as she is so poorly with other medical issues. Shall I supplement her myself?
It’s the second time she’s been deficient, my sister has
pernicious
anaemia
so she was checked for intrinsic factor but it was negative. I’m reluctant to take her off them as she is so poorly with other medical issues. Shall I supplement her myself?
Runner169
in
Pernicious Anaemia Society
3 years ago
Can I take iron? Carry SCT
I carry the sickle Cell trait. My TIBC is 331, iron 31. My Mom also Carrie’s sCT and is 72 and been told she can’t take iron and she’s 72. Her hematologist told her after certain age, if you have SCT you can’t t aske iron. He has her on folic acid and multivitamin. He’s left. turning 50 this month
I carry the sickle Cell trait. My TIBC is 331, iron 31. My Mom also Carrie’s sCT and is 72 and been told she can’t take iron and she’s 72. Her hematologist told her after certain age, if you have SCT you can’t t aske iron. He has her on folic acid and multivitamin. He’s left. turning 50 this month
Secretargirl007
in
Sickle Cell Society
2 years ago
Update 5.9
The journey with Pegasys continues to go well. I continue to have no side effects at 45mcg/week. All CMP numbers look good. No sign of any issues with kidneys or liver. The CBC numbers look really good RBC = 6.0 - WNL HGB = 13.3 - WNL HCT = 42.1 - WNL - at goal and dropping a bit every 4 weeks.
The journey with Pegasys continues to go well. I continue to have no side effects at 45mcg/week. All CMP numbers look good. No sign of any issues with kidneys or liver. The CBC numbers look really good RBC = 6.0 - WNL HGB = 13.3 - WNL HCT = 42.1 - WNL - at goal and dropping a bit every 4 weeks.
hunter5582
in
MPN Voice
2 years ago
Anyone used Vitex (Agnus castus/chasteberry) and did it help or aggravate RLS?
Having heavy n prolonged periods so was researching solutions. Came across Vitex (to balance out hormones) but no idea if it's safe for RLS because when I googled Vitex RLS I read something about it affecting dopamine receptors? Has anyone used this for their periods or any other issue, or can advise
Having heavy n prolonged periods so was researching solutions. Came across Vitex (to balance out hormones) but no idea if it's safe for RLS because when I googled Vitex RLS I read something about it affecting dopamine receptors? Has anyone used this for their periods or any other issue, or can advise
ejaji
in
Restless Legs Syndrome
2 years ago
Advice please from fellow suffers.
I have been having B12 injections for nearly 18months and due to failing the battle with my Dr to have them more frequently beause of my ongoing symptoms I am now self injecting. I am waiting to be see by a neurologist which could take monthsto be seen and most certainly wont be this side of Christmas
I have been having B12 injections for nearly 18months and due to failing the battle with my Dr to have them more frequently beause of my ongoing symptoms I am now self injecting. I am waiting to be see by a neurologist which could take monthsto be seen and most certainly wont be this side of Christmas
Jillymo
in
Pernicious Anaemia Society
3 years ago
Covid-19 positive
I received my third Pfizer vaccination shot on 8-16-21. I confirmed my antibodies in September with the Labcorp test, 164090. My score was 388. Not the highest but antibodies were present . I got sick 11-1-21, tested positive 11-2. I received an antibody infusion on 11-3. I started to feel better about
I received my third Pfizer vaccination shot on 8-16-21. I confirmed my antibodies in September with the Labcorp test, 164090. My score was 388. Not the highest but antibodies were present . I got sick 11-1-21, tested positive 11-2. I received an antibody infusion on 11-3. I started to feel better about
DUKELAXDAD
in
CLL Support
3 years ago
Methylcobalamin injections?
Hi, I am a B12 deficienct newbie and was reading that the methylcobalamin has some advantages over cyanocobalamin. Do you know if this can be purchased in injectable form anywhere please. I have not been able to find anywhere as yet. My GP has just diagnosed chronic fatigue syndrome after an initial
Hi, I am a B12 deficienct newbie and was reading that the methylcobalamin has some advantages over cyanocobalamin. Do you know if this can be purchased in injectable form anywhere please. I have not been able to find anywhere as yet. My GP has just diagnosed chronic fatigue syndrome after an initial
AngelaWoo
in
Pernicious Anaemia Society
3 years ago
Blood test results
I suspected that my ferritin was low again, but the lab and doctors say it is normal. If you remember, I had an iron infusion a year ago resulting in my level being very high, above range. Please may I have an interpretation of that and other tests.
I suspected that my ferritin was low again, but the lab and doctors say it is normal. If you remember, I had an iron infusion a year ago resulting in my level being very high, above range. Please may I have an interpretation of that and other tests.
Pastelart
in
Thyroid UK
3 years ago
Coloured lights in eye
Does anyone get coloured lights in the eye associated with GCA? I'm not talking about the "scintillating scotoma" or visual migraine (have had several of those over the past 15 years) but rather a large yellow blob which runs up the side of the eye on the side towards the nose. Most noticeable in the
Does anyone get coloured lights in the eye associated with GCA? I'm not talking about the "scintillating scotoma" or visual migraine (have had several of those over the past 15 years) but rather a large yellow blob which runs up the side of the eye on the side towards the nose. Most noticeable in the
podo
in
PMRGCAuk
3 years ago
Iron Supplements for those very sensitive to gluten
Hi, I'm being prescribed iron supplement (ferrous sulphate). GP assures me it is gluten free but GPs and Pharmacists don't understand gluten in ingredients. The pharmacy is not answering their phone when I call to find out the brands they have so I can do my own check. Any pharmacy prescribed brands
Hi, I'm being prescribed iron supplement (ferrous sulphate). GP assures me it is gluten free but GPs and Pharmacists don't understand gluten in ingredients. The pharmacy is not answering their phone when I call to find out the brands they have so I can do my own check. Any pharmacy prescribed brands
Hidden
in
Gluten Free Guerrillas
2 years ago
Test for intrinsic factor antibodies - when to do?
Quick questions, I hope! My doctor has agreed to this test but said we should wait until after 4 weeks after a third monthly injection of b12. I don't really see the point in waiting, because if it confirms a Pernicious Anemia diagnosis, that would hopefully mean I could start on more frequent loading
Quick questions, I hope! My doctor has agreed to this test but said we should wait until after 4 weeks after a third monthly injection of b12. I don't really see the point in waiting, because if it confirms a Pernicious Anemia diagnosis, that would hopefully mean I could start on more frequent loading
fireflymairi
in
Pernicious Anaemia Society
3 years ago
B12 levels are high but.......
Hi - I’m new to this, but will try to write my query. Got diagnosed with PA by a gastroenterologist about 6 years ago ( I don’t have the intrinsic factor) B12 injections every 3 months until about 3 years ago, then down to every 2 months. But at 6 weeks, I go downhill fast. This past year, it’s been
Hi - I’m new to this, but will try to write my query. Got diagnosed with PA by a gastroenterologist about 6 years ago ( I don’t have the intrinsic factor) B12 injections every 3 months until about 3 years ago, then down to every 2 months. But at 6 weeks, I go downhill fast. This past year, it’s been
Space69
in
Pernicious Anaemia Society
3 years ago
New and seeking advice re iron and vitamin D
Hello. I have had RLS most of my life (now 65yrs old), and it is pretty severe. I have never taken any medication, but I have tried most complementary approaches (magnesium, massage, etc.). At the moment it is worst during the day and in the evening. A parent had hemachromatosis, so I have just had my
Hello. I have had RLS most of my life (now 65yrs old), and it is pretty severe. I have never taken any medication, but I have tried most complementary approaches (magnesium, massage, etc.). At the moment it is worst during the day and in the evening. A parent had hemachromatosis, so I have just had my
Tildabri
in
Restless Legs Syndrome
3 years ago
Ghost: for those who feel invisible
This is an eggshell mosaic on slate called Ghost. It depicts the weird trickling sensation just under your skin with the delightful name of formication: to me, this felt like a physical depletion of self, trickling down to my fingertips and soles of my feet- always started when exhausted (a supermarket
This is an eggshell mosaic on slate called Ghost. It depicts the weird trickling sensation just under your skin with the delightful name of formication: to me, this felt like a physical depletion of self, trickling down to my fingertips and soles of my feet- always started when exhausted (a supermarket
Cherylclaire
Forum Support
in
Pernicious Anaemia Society
3 years ago
Where to but injectable B12 in the UK
I was diagnosed in Apr 2018. I bought extra injections from Germany and I have ran out. I get 1 injection every 6 weeks prescribed by my GP but self injected. Can anyone tell me where I can buy more. The b12 I am using is neo-cytamen 1000micrograms/1ml or hydroxocobalamin 1mg/1ml. Can anyone recommend
I was diagnosed in Apr 2018. I bought extra injections from Germany and I have ran out. I get 1 injection every 6 weeks prescribed by my GP but self injected. Can anyone tell me where I can buy more. The b12 I am using is neo-cytamen 1000micrograms/1ml or hydroxocobalamin 1mg/1ml. Can anyone recommend
area16rep
in
Pernicious Anaemia Society
3 years ago
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