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Sickle-cell anaemia
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EOD may not continue...
I have had 2 loading doses of B12. Before the 3rd set of loading doses began, the nurses queried the reason for such frequency...This started the drs querying it despite agreeing another 2 nd and 3rd course of B12 due to neurological symptoms. It appears my improvement in symptoms was not quite enough
I have had 2 loading doses of B12. Before the 3rd set of loading doses began, the nurses queried the reason for such frequency...This started the drs querying it despite agreeing another 2 nd and 3rd course of B12 due to neurological symptoms. It appears my improvement in symptoms was not quite enough
La2016
in
Pernicious Anaemia Society
2 months ago
Does fear play a role with pernicious anemia?
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
25092
in
Pernicious Anaemia Society
2 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
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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
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
4 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
4 months ago
Intrinsic Factor result
bit disappointing it didn’t come back positive., but I know they don’t always accurately reflect the underlying condition.It also means my pernicious anaemia could be due to long term use of PPIs rather than autoimmune gastritis. (By the way stopped PPIs in December last year) .
bit disappointing it didn’t come back positive., but I know they don’t always accurately reflect the underlying condition.It also means my pernicious anaemia could be due to long term use of PPIs rather than autoimmune gastritis. (By the way stopped PPIs in December last year) .
Chickens44
in
Pernicious Anaemia Society
2 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
Numbness after methyl injections
Hello everyone, I recently switched from cyanocobalamin to methylcobalamin. The first few injections I felt euphoric and normal again, had wake up symptoms like tingling, twitches and burning pain. But as I continue to inject, it seems like the effect has dulled and now I have more numbness than anything
Hello everyone, I recently switched from cyanocobalamin to methylcobalamin. The first few injections I felt euphoric and normal again, had wake up symptoms like tingling, twitches and burning pain. But as I continue to inject, it seems like the effect has dulled and now I have more numbness than anything
QianYunxi
in
Pernicious Anaemia Society
2 months ago
Low B12 and ferritin questions
Over the past year I have had frequent respiratory infections and when not ill, I am always exhausted. I often need to stay in bed on my days off recovering. Alongside the exhaustion and frequent infections I have dealt with nausea and gastric problems which I always thought were due to IBS. I faint
Over the past year I have had frequent respiratory infections and when not ill, I am always exhausted. I often need to stay in bed on my days off recovering. Alongside the exhaustion and frequent infections I have dealt with nausea and gastric problems which I always thought were due to IBS. I faint
bakedbean5007
in
Pernicious Anaemia Society
2 months ago
hashimotos/parathyroid
The reason I ask the below question yesterday is because I have hypercalceimia and I don’t know what Vit supplements I can take without making it worse . I feel worse now than ever and my life is dismal so poorly all time just existing and frightened . hi all can anyone tell me the difference between
The reason I ask the below question yesterday is because I have hypercalceimia and I don’t know what Vit supplements I can take without making it worse . I feel worse now than ever and my life is dismal so poorly all time just existing and frightened . hi all can anyone tell me the difference between
Jemjet
in
Thyroid UK
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
Parathyroid/hashimoto,s
hi all can anyone tell me the difference between pth and pthrl blood test I have been to see a professor of endocrinology and he says I need a parathyroid removing due to my hypercalcemia I still feel absolutely like I am dying and so nauseous I have also been diagnosed with reactive hyperglycaemia
hi all can anyone tell me the difference between pth and pthrl blood test I have been to see a professor of endocrinology and he says I need a parathyroid removing due to my hypercalcemia I still feel absolutely like I am dying and so nauseous I have also been diagnosed with reactive hyperglycaemia
Jemjet
in
Thyroid UK
2 months ago
husband Fibro and interstitial cystiyis
my husband age 63 today is struggling with the pain of both Fibro and IC even though on duloxetine, mirabegron , high dose Gabapentin , tonne of paracetamol …(hospital will no longer supply the Elmiron pentosan polysulphate). Guys urology in London offered bladder removal or bladder lesion laser - I
my husband age 63 today is struggling with the pain of both Fibro and IC even though on duloxetine, mirabegron , high dose Gabapentin , tonne of paracetamol …(hospital will no longer supply the Elmiron pentosan polysulphate). Guys urology in London offered bladder removal or bladder lesion laser - I
Fibrofibrofibro
in
Fibromyalgia Action UK
3 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
8 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
8 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
8 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
8 months ago
Fluttering and shaking
Hello my well informed PA society, I am recently experiencing fluttering in my body along with shaking. I have pernicious anemia and hypothyroid, gastritis. Recently I stopped taking my iron pills because they were making me so extremely hungry and gaining weight. I've tried several brands to see
Hello my well informed PA society, I am recently experiencing fluttering in my body along with shaking. I have pernicious anemia and hypothyroid, gastritis. Recently I stopped taking my iron pills because they were making me so extremely hungry and gaining weight. I've tried several brands to see
25092
in
Pernicious Anaemia Society
3 months ago
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