Search
Search
About
Log in
Join
Experiences with
Haemolytic anaemia
Posts
Communities
7,568 public posts
Filter results
Blood test results..interpretation/advice.
I was diagnosed with B12 deficiency at the beginning of the month and have received a prescription for loading dose (I self administered without approval or support as the first appointment was nearly 2 months away).I've since had a further blood test which revealed no anaemia or macrocytic anaemia but
I was diagnosed with B12 deficiency at the beginning of the month and have received a prescription for loading dose (I self administered without approval or support as the first appointment was nearly 2 months away).I've since had a further blood test which revealed no anaemia or macrocytic anaemia but
Betwelvepatient
in
Pernicious Anaemia Society
6 months ago
Prolia
I have just received an email from my GP who has arranged for a F2F appointment to see me beginning January to discuss me starting to take Prolia. My last Dexascan in 2021 did show that I have osteoporosis, and I did take Alendronic Acid for the first two years of having Polymyalgia. Since then I have
I have just received an email from my GP who has arranged for a F2F appointment to see me beginning January to discuss me starting to take Prolia. My last Dexascan in 2021 did show that I have osteoporosis, and I did take Alendronic Acid for the first two years of having Polymyalgia. Since then I have
Purplegloss
in
PMRGCAuk
6 months ago
UK NHS - PA treatment & management experiences
I was diagnosed (by my GP) with PA about 2 months ago and so far I’m on the ‘standard’ NHS protocol having had my 6 loading injections of B12 and awaiting the next injection in 2-3 months (this period seems a bit hazy). To be honest, my GP appears to be ‘simply’ following the prescribed script so I’
I was diagnosed (by my GP) with PA about 2 months ago and so far I’m on the ‘standard’ NHS protocol having had my 6 loading injections of B12 and awaiting the next injection in 2-3 months (this period seems a bit hazy). To be honest, my GP appears to be ‘simply’ following the prescribed script so I’
Pa234aw
in
Pernicious Anaemia Society
7 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
PDF of Hopkins or Mayo DA Withdrawal protocol??
Hi, I seem to remember a while back finding a link (here I think, maybe on Reddit?) to a PDF someone had gotten from Hopkins, or one of the other big clinics, detailing their precise protocol and what to "expect" when finally off of a DA in terms of days, etc. Can someone please repost that? I went
Hi, I seem to remember a while back finding a link (here I think, maybe on Reddit?) to a PDF someone had gotten from Hopkins, or one of the other big clinics, detailing their precise protocol and what to "expect" when finally off of a DA in terms of days, etc. Can someone please repost that? I went
Avart
in
Restless Legs Syndrome
7 months ago
CCUS/MDS and B12 def
Best members , I inject hydroxocobalamin EOD since october 2022. I had amongst all other classical symptoms the most terrible kimd of burning parestisias from my waist to my knees, terrible burning waves, I consider this as symptomd from subacute combined degeneration of spinal cord. Last weeks I am
Best members , I inject hydroxocobalamin EOD since october 2022. I had amongst all other classical symptoms the most terrible kimd of burning parestisias from my waist to my knees, terrible burning waves, I consider this as symptomd from subacute combined degeneration of spinal cord. Last weeks I am
Annaunge
in
Pernicious Anaemia Society
7 months ago
It is not me it is you.
I think I may have an understanding. "Those on this forum which refer to my work and the accomplishments I experience as the results of that work as finding what works by experimentation, can not fathom that I can review the current information and methodology used to design protocols and design a
I think I may have an understanding. "Those on this forum which refer to my work and the accomplishments I experience as the results of that work as finding what works by experimentation, can not fathom that I can review the current information and methodology used to design protocols and design a
WIZARD6787
in
Pernicious Anaemia Society
7 months ago
b12 keeps dropping ferritin
Hi Friends, Has anyone had success raising and maintaining ferritin after it dropped from b12 injections? I first caught the iron issue in October, after shots all last summer. I tried many supplements until landing on the least bad offender to my stomach. I got my ferritin to 33, but it dropped
Hi Friends, Has anyone had success raising and maintaining ferritin after it dropped from b12 injections? I first caught the iron issue in October, after shots all last summer. I tried many supplements until landing on the least bad offender to my stomach. I got my ferritin to 33, but it dropped
MuppDog
in
Pernicious Anaemia Society
2 months ago
Symptoms of Vitamin B12 deficiency - that I cannot find an answer to....
I had a low Vitamin B12 (125 mg/L) and low folate. One of my symptoms was severe pins and needles - particularly my legs, feet and genital areas. Is it common to have more severe symptoms in one leg more than the other? I have quite severe pins and needs in my left leg, and milder pins and needles
I had a low Vitamin B12 (125 mg/L) and low folate. One of my symptoms was severe pins and needles - particularly my legs, feet and genital areas. Is it common to have more severe symptoms in one leg more than the other? I have quite severe pins and needs in my left leg, and milder pins and needles
Madman070578
in
Pernicious Anaemia Society
7 months ago
my story
I started on cobalamin injections pre Covid then when lockdown arrived was put on Tablet form which remained until last July when a retired Doctor in our practice noticed I’d been requesting to be given B12 injections once more. I’d gone for a different reason but I felt so well by next day it convinced
I started on cobalamin injections pre Covid then when lockdown arrived was put on Tablet form which remained until last July when a retired Doctor in our practice noticed I’d been requesting to be given B12 injections once more. I’d gone for a different reason but I felt so well by next day it convinced
Beadbuddy
in
Pernicious Anaemia Society
7 months ago
Pernicious anaemia triggered transverse myelitis.
I’m on two methyl injections a day. From Monday I’ll move on to 3 a day. The dosage is 2500mcg. I previously was on hydroxo eod. This is really effecting my life. I currently am unable to walk unaided. I use my crutches.
I’m on two methyl injections a day. From Monday I’ll move on to 3 a day. The dosage is 2500mcg. I previously was on hydroxo eod. This is really effecting my life. I currently am unable to walk unaided. I use my crutches.
qwertystar
in
Pernicious Anaemia Society
7 months ago
Vitamin b12/Folate deficiency
Hi all, Firstly can I say how helpful I’ve found this forum with the issues I’ve had with my health recently. I’ve recently been diagnosed by my GP with b12 and folate deficiency. I had a blood test (in the UK) and was told my level was 125 (not sure what unit of measure). It was suggested I had a
Hi all, Firstly can I say how helpful I’ve found this forum with the issues I’ve had with my health recently. I’ve recently been diagnosed by my GP with b12 and folate deficiency. I had a blood test (in the UK) and was told my level was 125 (not sure what unit of measure). It was suggested I had a
Madman070578
in
Pernicious Anaemia Society
7 months ago
Blood work
I recently got my blood tested so I could check for ferritin levels and my ferritin was at 329. I had gotten my blood test a year ago when I first saw the doctor for RLS but they’d didn't test ferritin levels at that time. My doctor just messaged me about my new results and said my results showed elevation
I recently got my blood tested so I could check for ferritin levels and my ferritin was at 329. I had gotten my blood test a year ago when I first saw the doctor for RLS but they’d didn't test ferritin levels at that time. My doctor just messaged me about my new results and said my results showed elevation
Tbone87
in
Restless Legs Syndrome
7 months ago
How much folate is everyone taking?
How much folate is everyone taking?I’m now currently twice a day, will be moving to three times a day. When I was injecting once a day, I was taking one 5mg of folic acid. Now that I’ve increased my injections, im wondering if I should increase my folic acid.
How much folate is everyone taking?I’m now currently twice a day, will be moving to three times a day. When I was injecting once a day, I was taking one 5mg of folic acid. Now that I’ve increased my injections, im wondering if I should increase my folic acid.
qwertystar
in
Pernicious Anaemia Society
7 months ago
Panpharma B12 Depot out of stock at Apohealth - now what do I do?
Hi I made the mistake of ordering Panpharma Vitamin B12 from Apohealth recently but when it came the box looked a bit different and I realised I'd not ordered the "depot" version. I had cobalamin not hydroxy. So, annoyed with myself, I sent them back. I kept forgetting to reorder. Came to do it
Hi I made the mistake of ordering Panpharma Vitamin B12 from Apohealth recently but when it came the box looked a bit different and I realised I'd not ordered the "depot" version. I had cobalamin not hydroxy. So, annoyed with myself, I sent them back. I kept forgetting to reorder. Came to do it
FancyPants54
in
Pernicious Anaemia Society
7 months ago
What now, totally lost and scared
I was all ready to start self injecting B12 having done much research and received helpful advice on here, received supplies and got my first jab done at a clinic. I doubted my GP would consider injections as my total serum B12 was 747ng/L (200-900) 3 months ago so decided to go this alone. Very low
I was all ready to start self injecting B12 having done much research and received helpful advice on here, received supplies and got my first jab done at a clinic. I doubted my GP would consider injections as my total serum B12 was 747ng/L (200-900) 3 months ago so decided to go this alone. Very low
Bertiepuss
in
Pernicious Anaemia Society
7 months ago
Vitamin D and Anemia: Insights into an Emerging Association
Found an interesting study. The conclusion sold it for me. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4659411/ CONCLUSION Vitamin D is associated with anemia in various study populations and recent evidence suggests that the association may differ by race and is likely specific to anemia of inflammation
Found an interesting study. The conclusion sold it for me. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4659411/ CONCLUSION Vitamin D is associated with anemia in various study populations and recent evidence suggests that the association may differ by race and is likely specific to anemia of inflammation
WideBody
in
Restless Legs Syndrome
7 months ago
Hypothesis II
My hypothesis is that the antibody that attacks the intrinsic factor and or parietal cell may also bind to B12 rendering it unusable at the cellular level. That the production of the antibody with regards to amount is unknown and different at different times for the individual and different for each
My hypothesis is that the antibody that attacks the intrinsic factor and or parietal cell may also bind to B12 rendering it unusable at the cellular level. That the production of the antibody with regards to amount is unknown and different at different times for the individual and different for each
WIZARD6787
in
Pernicious Anaemia Society
7 months ago
B12 and Ferritin
I said I would post after my haematology consultation. I had a ferritin infusion in February after suspecting that I was ferritin/iron deficient as a result of research into ranges etc. I discovered that 30 can be regarded as ferritin deficient, a lot more than the bottom of the range 11 regarded as
I said I would post after my haematology consultation. I had a ferritin infusion in February after suspecting that I was ferritin/iron deficient as a result of research into ranges etc. I discovered that 30 can be regarded as ferritin deficient, a lot more than the bottom of the range 11 regarded as
Orchard33
in
Pernicious Anaemia Society
3 months ago
symptoms flare-up
I have been battling an iron deficiency since November, that seems to be a result of my correcting b12 deficiency with shots. I have not been taking the full recommended dose of iron until about a week ago. My ferritin is 25, which is up from 14, but still deficient. The last 3 weeks or so I have notice
I have been battling an iron deficiency since November, that seems to be a result of my correcting b12 deficiency with shots. I have not been taking the full recommended dose of iron until about a week ago. My ferritin is 25, which is up from 14, but still deficient. The last 3 weeks or so I have notice
MuppDog
in
Pernicious Anaemia Society
3 months ago
what is it this time?
Ok, so I’ve been SI for just under a month, moving from twice weekly to about EOD following symptoms response. I was initially taking 3mg folic acid each morning with food along with magnesium at night. Two days ago I bought a new brand of folic and increased my dosage to 5mg (following recommendations
Ok, so I’ve been SI for just under a month, moving from twice weekly to about EOD following symptoms response. I was initially taking 3mg folic acid each morning with food along with magnesium at night. Two days ago I bought a new brand of folic and increased my dosage to 5mg (following recommendations
PlatypusProfit8077
in
Pernicious Anaemia Society
9 hours ago
1
...
13
14
15
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Pernicious Anaemia Society
3519 results
Thyroid UK
2428 results
Restless Legs Syndrome
347 results
View top 10 communities
Sort by
Most Relevant
Newest