Search
Search
About
Log in
Join
Experiences with
Sickle-cell anaemia
Posts
Communities
8,357 public posts
Filter results
iron transfusion
Hi I’m just wondering how long people in the uk have waited for an iron infusion. I requested an iron infusion months and months ago as I can’t tolerate iron orally. Unfortunately my doctor forgot to put me on the waiting list and only amended that about a month ago after I mentioning that I was waiting
Hi I’m just wondering how long people in the uk have waited for an iron infusion. I requested an iron infusion months and months ago as I can’t tolerate iron orally. Unfortunately my doctor forgot to put me on the waiting list and only amended that about a month ago after I mentioning that I was waiting
Heather-rose
in
Restless Legs Syndrome
9 months ago
B12 very high with normal blood results?.
hey, hoping someone with some b12 knowledge can give me some advice for when I see my doctor. Last year I was having some b12 injections paid privately, my last one was in early August. They actually made me feel better, but had to stop because of cost. Then in October I started getting severe deficient
hey, hoping someone with some b12 knowledge can give me some advice for when I see my doctor. Last year I was having some b12 injections paid privately, my last one was in early August. They actually made me feel better, but had to stop because of cost. Then in October I started getting severe deficient
Jodie782
in
Pernicious Anaemia Society
6 months ago
The value of yogurt for pred
I've been away for the last two weekends, so rather than bother with yogurt I had my pred (2.5mg) with a pot of Bircher muesli. The first time, about an hour later I had a nasty taste in my mouth and acid reflux. It was the pred dissolving, but I thought perhaps it was 'one of those things'. Anyway
I've been away for the last two weekends, so rather than bother with yogurt I had my pred (2.5mg) with a pot of Bircher muesli. The first time, about an hour later I had a nasty taste in my mouth and acid reflux. It was the pred dissolving, but I thought perhaps it was 'one of those things'. Anyway
Viveka
in
PMRGCAuk
9 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Vitamin/supplements
Can I ask what vitamins would be useful to try to support healthy thyroid function. I know iron, and vitamin B12 are important, I wondered if a specific Thyriod supplement was useful. I found this one, does anyone else take this? https://heynutrition.com/products/thyroid-complex?_gl=1*1d25mkn*_gcl_aw
Can I ask what vitamins would be useful to try to support healthy thyroid function. I know iron, and vitamin B12 are important, I wondered if a specific Thyriod supplement was useful. I found this one, does anyone else take this? https://heynutrition.com/products/thyroid-complex?_gl=1*1d25mkn*_gcl_aw
Fee52
in
Thyroid UK
9 months ago
B12 injections frequency
Hi I diviculutis (diagnosis November 2022) and in March 2023 was told that I have B12 malabsorption after a blood test due to this I have been having B12 injections every 12 weeks since then. I have also been diagnosed with coeliac disease a few months ago. My problem is around 3 weeks before
Hi I diviculutis (diagnosis November 2022) and in March 2023 was told that I have B12 malabsorption after a blood test due to this I have been having B12 injections every 12 weeks since then. I have also been diagnosed with coeliac disease a few months ago. My problem is around 3 weeks before
Welshtoffee
in
Pernicious Anaemia Society
6 months ago
Oral iron regimen
I had an iron infusion (Newcastle uk) last December which put my serum ferritin up from 37 to 237, and helped considerably. However, it has gradually slipped back to 180, so I am hoping to start the oral gentle iron. Please can someone remind me of the best time to take these, and dosage. The tablets
I had an iron infusion (Newcastle uk) last December which put my serum ferritin up from 37 to 237, and helped considerably. However, it has gradually slipped back to 180, so I am hoping to start the oral gentle iron. Please can someone remind me of the best time to take these, and dosage. The tablets
Edengirl58
in
Restless Legs Syndrome
9 months ago
Clunking, Fading and Sleep
This is written from the perspective of having experienced life long B12 deficiency and injecting 5+- times a day consistently for the last 5 weeks. 1 mg methylcobalamin and .25 mg hydroxocobalamin with 6 mg adenosylcobalamin SL. Which lead to consistent improvement weekly. I am well aware that I or
This is written from the perspective of having experienced life long B12 deficiency and injecting 5+- times a day consistently for the last 5 weeks. 1 mg methylcobalamin and .25 mg hydroxocobalamin with 6 mg adenosylcobalamin SL. Which lead to consistent improvement weekly. I am well aware that I or
WIZARD6787
in
Pernicious Anaemia Society
9 months ago
PV - Folic Acid and Vit D
Hi Please excuse if this has been asked before, I’m sure it has but can’t find the post 😬 I have PV and had blood done at Dr recently and was told I needed to take folic acid and Vit D. I take HU which has recently been reduced by 1 tablet a week and last bloods were HCT 38, Hb 13.4, WBC 7.6
Hi Please excuse if this has been asked before, I’m sure it has but can’t find the post 😬 I have PV and had blood done at Dr recently and was told I needed to take folic acid and Vit D. I take HU which has recently been reduced by 1 tablet a week and last bloods were HCT 38, Hb 13.4, WBC 7.6
Hocus58
in
MPN Voice
9 months ago
Blood result and raised MCV
Hi everyone. I had a recent blood test as I've been supplementing with gentle iron, general A-Z vits and B12 since the spring. I particularly wanted to check up on my iron/ferritin status. I've never had a positive diagnosis of PA, or even of B12 deficiency as my levels have always been 'in range'.
Hi everyone. I had a recent blood test as I've been supplementing with gentle iron, general A-Z vits and B12 since the spring. I particularly wanted to check up on my iron/ferritin status. I've never had a positive diagnosis of PA, or even of B12 deficiency as my levels have always been 'in range'.
KBird01
in
Pernicious Anaemia Society
9 months ago
one last question ( hopefully)
I have finally managed to get an appointment with my GP where I hope to convince him to give me B12 injections more often that once every 8 weeks and I never had a loading doses so am hoping for that too. I hope I can get him to do some tests, like size shape and number of red blood cells, intrinsic
I have finally managed to get an appointment with my GP where I hope to convince him to give me B12 injections more often that once every 8 weeks and I never had a loading doses so am hoping for that too. I hope I can get him to do some tests, like size shape and number of red blood cells, intrinsic
totallyFrustrated
in
Pernicious Anaemia Society
9 months ago
Functional B12 deficiency
Hi, I have been around a long time and read every day. I have a hard time understanding what a functional deficiency mean. In my case just a few injections brought my MMA and homocysteine down very quickly. Is that a functional deficiency? Seems like I would understand this by now. I have never
Hi, I have been around a long time and read every day. I have a hard time understanding what a functional deficiency mean. In my case just a few injections brought my MMA and homocysteine down very quickly. Is that a functional deficiency? Seems like I would understand this by now. I have never
EiCa
in
Pernicious Anaemia Society
9 months ago
High iron / low ferritin, advice on B12 and folate levels - results in pics
Hi, I’ve had some great comments and links from members to my last post on my iron panel results. It was suggested that I share my B12 and Folate levels. I’ve puts pics of these in comments first ones from May and second from this month. I want to raise ferritin levels but given iron levels I shouldn
Hi, I’ve had some great comments and links from members to my last post on my iron panel results. It was suggested that I share my B12 and Folate levels. I’ve puts pics of these in comments first ones from May and second from this month. I want to raise ferritin levels but given iron levels I shouldn
Slowrunner1208
in
Thyroid UK
9 months ago
Methylcobalamin vs Hydroxocobalamin ?
Does anyone else find they do better on methylcobalamin than hydroxocobalamin? I've done some major googling but not been able to find out much and would like to ask if anyone has had the same experience as me? I started SI for years with Methylcobalamin and was doing great. When stocks became impossible
Does anyone else find they do better on methylcobalamin than hydroxocobalamin? I've done some major googling but not been able to find out much and would like to ask if anyone has had the same experience as me? I started SI for years with Methylcobalamin and was doing great. When stocks became impossible
pipple
in
Pernicious Anaemia Society
9 months ago
Life after Tocilizumab?
I've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs
I've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs
tweety_pie
in
PMRGCAuk
22 days ago
neutrphils
I started O and V last year I have one week left on Venetoclax. I’ve had sepsis twice and been an in patient to get it sorted . About 5 months ago my neutrophil count dropped below 1 and I started on Filgrastim. I was having one a week at first which helped then they dropped so it was two a week , they
I started O and V last year I have one week left on Venetoclax. I’ve had sepsis twice and been an in patient to get it sorted . About 5 months ago my neutrophil count dropped below 1 and I started on Filgrastim. I was having one a week at first which helped then they dropped so it was two a week , they
jillybird13
in
CLL Support
9 months ago
Tocilizumab
I am advised that a biosimilar to tocilizumab has been approved in the UK and will be available at a more economical price , enabling NICE to allow NHS prescriptions for GCA after the initial 12 months. My GP and Consultant keen to get me off Pred altogether ( currently on second attempt in 3 years)
I am advised that a biosimilar to tocilizumab has been approved in the UK and will be available at a more economical price , enabling NICE to allow NHS prescriptions for GCA after the initial 12 months. My GP and Consultant keen to get me off Pred altogether ( currently on second attempt in 3 years)
Niblick
in
PMRGCAuk
30 days ago
Can anyone recommend a good haematologist or Neurologist for pernicious anaemia
Hi can anyone recommend a haematologist or neurologist who has a good understanding of pernicious anaemia anywhere in England? (Needs to be NHS as GP said they won't act on any recommendation from a private doctor). Many of my neurological symptoms, although much improved, never went away completely
Hi can anyone recommend a haematologist or neurologist who has a good understanding of pernicious anaemia anywhere in England? (Needs to be NHS as GP said they won't act on any recommendation from a private doctor). Many of my neurological symptoms, although much improved, never went away completely
Rett713
in
Pernicious Anaemia Society
6 months ago
Intrinsic factor antibody
I'm posting on here as I been advised to. I've just been back to my GP because I had a blood test done the other week for intrinsic factor antibody. I had a result of 3.66 which I thought was positive but my GP just said it's negative ? I had the test done because my vitamins b12 is 211.
I'm posting on here as I been advised to. I've just been back to my GP because I had a blood test done the other week for intrinsic factor antibody. I had a result of 3.66 which I thought was positive but my GP just said it's negative ? I had the test done because my vitamins b12 is 211.
suzybear
in
Pernicious Anaemia Society
9 months ago
b12 purchase
Hi I was treated by GP for low B12 for a year but once my levels were midway on “normal range” the injections were discontinued and I struggle to find ways to boost my intake orally. I have just purchased Hydroxocobalamin online but am unsure if the dosage is similar to that I was previously prescribed
Hi I was treated by GP for low B12 for a year but once my levels were midway on “normal range” the injections were discontinued and I struggle to find ways to boost my intake orally. I have just purchased Hydroxocobalamin online but am unsure if the dosage is similar to that I was previously prescribed
Maximus2222
in
Pernicious Anaemia Society
9 months ago
Colonoscopy
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Babciboys
in
PMRGCAuk
1 month ago
1
...
20
21
22
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Pernicious Anaemia Society
3540 results
Thyroid UK
2438 results
MPN Voice
363 results
View top 10 communities
Sort by
Most Relevant
Newest