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Measuring B12 levels after PA diagnosis
Hello, I was wondering if someone could please explain why it’s not helpful to measure B12 levels after having regular B12 injections for pernicious anaemia? My doctor keeps measuring mine, even though I have pernicious anemia and am having regular B12 injections at the surgery. My B12 results are unsurprisingly
Hello, I was wondering if someone could please explain why it’s not helpful to measure B12 levels after having regular B12 injections for pernicious anaemia? My doctor keeps measuring mine, even though I have pernicious anemia and am having regular B12 injections at the surgery. My B12 results are unsurprisingly
JadeRR
in
Pernicious Anaemia Society
2 years ago
tocilizumab after relapse
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Devoid
in
PMRGCAuk
2 years ago
Intrinsic Factor blood test - Vitamin B12 deficiency
Today I had a blood test for Intrinsic Factor. Some Autoimmune disease can cause Pernicious anemia. Watch this space for results 💉
Today I had a blood test for Intrinsic Factor. Some Autoimmune disease can cause Pernicious anemia. Watch this space for results 💉
jules1955
in
PMRGCAuk
2 years ago
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what do the different parts of my iron test mean?
A short while ago, I read a brilliant description from one of the admins (I think) explaining what all the different parts of the iron panel (serum iron, tibc, uibc, transferrin saturation, and ferritin) meant and how to interpret the results. I thought I’d saved it, but can’t find it so wondered if
A short while ago, I read a brilliant description from one of the admins (I think) explaining what all the different parts of the iron panel (serum iron, tibc, uibc, transferrin saturation, and ferritin) meant and how to interpret the results. I thought I’d saved it, but can’t find it so wondered if
Mazes
in
Thyroid UK
2 years ago
Test Result Comments Welcomed Pre Endo Appt
Dear Unlockers, I’ve got a telephone consultation with my endo this Friday and am writing to ask for your views on my test results in advance. I had a lot of blood work done in April in preparation for an endo appt which was rearranged, so I had to repeat the thyroid panel this month. There was very
Dear Unlockers, I’ve got a telephone consultation with my endo this Friday and am writing to ask for your views on my test results in advance. I had a lot of blood work done in April in preparation for an endo appt which was rearranged, so I had to repeat the thyroid panel this month. There was very
PDS1
in
Thyroid UK
2 years ago
DIO2 Homozygous CC
I got the test results from Regenerus today and I am homozygous CC which means 'CC infers a lower than average response and that tri-iodothyroxine (T3) perhaps should be considered'. I saw my new Endo for the first time very recently (Saturday) and he increased my levo dose from 93mcg to 100mcg, re-test
I got the test results from Regenerus today and I am homozygous CC which means 'CC infers a lower than average response and that tri-iodothyroxine (T3) perhaps should be considered'. I saw my new Endo for the first time very recently (Saturday) and he increased my levo dose from 93mcg to 100mcg, re-test
Pearlteapot
in
Thyroid UK
2 years ago
Fewer Injections, more injections or stay the course? Please advise.
I have been injecting 1 ml of methylcobalamin and cyanocobalamin, eod, alternatively for about a month. Sometimes, the numbness in my hands feels like it’s getting worse and now my right leg is weak. Should I inject once a week or skip a week. Or, should I push through the pain, numbness and weakness
I have been injecting 1 ml of methylcobalamin and cyanocobalamin, eod, alternatively for about a month. Sometimes, the numbness in my hands feels like it’s getting worse and now my right leg is weak. Should I inject once a week or skip a week. Or, should I push through the pain, numbness and weakness
RisingOne
in
Pernicious Anaemia Society
2 years ago
Advice please- you have true PA or Malabsorption B12 deficiency would taking a multivitamin and increasing meat nudge up b12 levels?
hi again everyone, really need this clarification please, if you have pernicious anemia or malabsorption b12 and folate defiency , would a multivitamin and increased meat intake (meat overload lol) bring your levels up? I was B12 179ng/l beginning July now apparently I’m 199ng/l folate was July 1.5 not
hi again everyone, really need this clarification please, if you have pernicious anemia or malabsorption b12 and folate defiency , would a multivitamin and increased meat intake (meat overload lol) bring your levels up? I was B12 179ng/l beginning July now apparently I’m 199ng/l folate was July 1.5 not
Steph0077
in
Pernicious Anaemia Society
2 years ago
Request - Real time experience Reco for the best haematologists in Portugal please
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
PMRGCAuk
2 years ago
Advice please - thyroid, vitamins, ferritin. Dr only wants to give statins?
My sister's surgery only seem interested in giving her statins, but I'm concerned about some of her other results instead. Please can someone else give their views? I wonder if I'm right or not. She's just 60 and has been on levo for about 30 years. Sorry, results are a bit long! Serum FT4 –
normal
My sister's surgery only seem interested in giving her statins, but I'm concerned about some of her other results instead. Please can someone else give their views? I wonder if I'm right or not. She's just 60 and has been on levo for about 30 years. Sorry, results are a bit long! Serum FT4 –
normal
TaraJR
in
Thyroid UK
2 years ago
Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
MPN Voice
2 years ago
Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
Fight MPN
2 years ago
Extremely frustrated and angry
My life 7 years ago I went to my GP to ask for blood tests to be done cos I wasn’t feeling well, I was tired, weight gain (ive always been under 6st) I couldn’t understand why I was putting it on?? Etc….. When I went back for the results she “looked me in the face” and told me my bloods were all fine
My life 7 years ago I went to my GP to ask for blood tests to be done cos I wasn’t feeling well, I was tired, weight gain (ive always been under 6st) I couldn’t understand why I was putting it on?? Etc….. When I went back for the results she “looked me in the face” and told me my bloods were all fine
Queeniz
in
Pernicious Anaemia Society
2 years ago
MCV & MCH
I have posted a chart of my MCV & MCH as I have recently got copies of blood tests. As you can see most of the mch have been flagged. Looking at getting MMA and Homocysteine tests as my last Active B12 66.1 pmol/L (25.1 - 165 pmol). Need to be tested for PA as well.
I have posted a chart of my MCV & MCH as I have recently got copies of blood tests. As you can see most of the mch have been flagged. Looking at getting MMA and Homocysteine tests as my last Active B12 66.1 pmol/L (25.1 - 165 pmol). Need to be tested for PA as well.
diamondgirl9022
in
Pernicious Anaemia Society
2 years ago
Supplements for iron
I have had the following blood tests: Serum ferritin level 41 ug/L [10.0 - 322.0] Serum folate level 23.5 ug/L [5.4 - 24.0] Should I take some iron tablets to boost my ferritin levels and if so what dosage should I be taking?
I have had the following blood tests: Serum ferritin level 41 ug/L [10.0 - 322.0] Serum folate level 23.5 ug/L [5.4 - 24.0] Should I take some iron tablets to boost my ferritin levels and if so what dosage should I be taking?
Luci20
in
Thyroid UK
2 years ago
levothyroxine/Teva/mannitol
hi everyone.. It’s just come to my notice that Levothyroxine which I’ve been taking for about 25 years or so contains “mannitol “ As I have very bad restless legs for about the same amount of years and getting worse … I was wondering how long mannitol has been in levothyroxine ? Also.. would it affect
hi everyone.. It’s just come to my notice that Levothyroxine which I’ve been taking for about 25 years or so contains “mannitol “ As I have very bad restless legs for about the same amount of years and getting worse … I was wondering how long mannitol has been in levothyroxine ? Also.. would it affect
janland
in
Thyroid UK
2 years ago
INTRINSIC FACTOR ANTIBODY TEST . Has any member with P.A. had to have more than one IFAB test to get a positive reading ?
Is it a fact that the Intrinsic Factor antibodies come and go continually ? Or do they not appear when the patient has had P.A. untreated for a long period ,and the antibodies have “done their job “ and destroyed the parietal cells ?
Is it a fact that the Intrinsic Factor antibodies come and go continually ? Or do they not appear when the patient has had P.A. untreated for a long period ,and the antibodies have “done their job “ and destroyed the parietal cells ?
wedgewood
in
Pernicious Anaemia Society
2 years ago
RLS/PLMs and treatment
I would like to share information concerning my health particularly in relation to RLS/PLMs hoping that others with the condition may be helped. My experience of RLS could go back to my teens when, whilst seated and playing cards with my brother, we would both be moving our legs quite rapidly, toes
I would like to share information concerning my health particularly in relation to RLS/PLMs hoping that others with the condition may be helped. My experience of RLS could go back to my teens when, whilst seated and playing cards with my brother, we would both be moving our legs quite rapidly, toes
Eccleston
in
Restless Legs Syndrome
2 years ago
IRON results help please
Last year thanks to some good advice from radd and others, I was able to have an iron infusion which really improved my life. A year on, I have had the full iron panel again and my iron has dropped back to 22 from 33, and my ferritin is still way high. My GP has summoned me by email as he has
Last year thanks to some good advice from radd and others, I was able to have an iron infusion which really improved my life. A year on, I have had the full iron panel again and my iron has dropped back to 22 from 33, and my ferritin is still way high. My GP has summoned me by email as he has
Daffers123
in
Thyroid UK
2 years ago
Iron supplementation
I apologize, I have been looking at past posts but having trouble finding the best answer. I most likely have RLS, and doc wants to increase my Ferritin to 100. They recommend iron but don't say what kind, or how best to take it. Other then that the Neurologist was fantastic. So I was hoping some
I apologize, I have been looking at past posts but having trouble finding the best answer. I most likely have RLS, and doc wants to increase my Ferritin to 100. They recommend iron but don't say what kind, or how best to take it. Other then that the Neurologist was fantastic. So I was hoping some
Thyroid2468
in
Restless Legs Syndrome
2 years ago
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