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Haemolytic anaemia
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? RSV vaccine
Hi folks, I seem to remember a mention of the RSV shot not being great for CLL pts? Anyone have info or thoughts on this? And another question: I got my latest Covid booster a few weeks ago. During the injection (by a pharmacist) I noted I didn’t feel the med going into my muscle, and looked down quickly
Hi folks, I seem to remember a mention of the RSV shot not being great for CLL pts? Anyone have info or thoughts on this? And another question: I got my latest Covid booster a few weeks ago. During the injection (by a pharmacist) I noted I didn’t feel the med going into my muscle, and looked down quickly
Islandjewel23
in
CLL Support
8 months ago
Sourcing Hydroxocobalamin, help please
Edit: Solved this issue. Thanks. Supplies now on order :) I've been self-injecting for a few years now, as GP refuses to diagnose B12 deficiency, in spite of several indications. I now need to buy more hydroxocobalamin but haven't kept a note of where I've previously bought from, in Germany.
Edit: Solved this issue. Thanks. Supplies now on order :) I've been self-injecting for a few years now, as GP refuses to diagnose B12 deficiency, in spite of several indications. I now need to buy more hydroxocobalamin but haven't kept a note of where I've previously bought from, in Germany.
JMN2017
in
Pernicious Anaemia Society
8 months ago
Low Blood Sugar
Anyone know of receiving 5Mg / day of folic acid due to the findings below From My Haematologist to my Dr which is the usual 4 weekly report he sends' Dapsone is giving rise to compensated haemolysis without anemia as indicated by a reticulocyte count of 161.7 and haemolysis is the cause of the abnormally
Anyone know of receiving 5Mg / day of folic acid due to the findings below From My Haematologist to my Dr which is the usual 4 weekly report he sends' Dapsone is giving rise to compensated haemolysis without anemia as indicated by a reticulocyte count of 161.7 and haemolysis is the cause of the abnormally
uide3095
in
CLL Support
8 months ago
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Buprenorphine and Naloxone 2mg/0.5 mg sublingual film
I need help from the members who have taken it or the brand name Suboxone. The oxycodone I have been taking since 2015 has lost effect therefore Doctor B prescribed Buprenorphine and Naloxone for me. The first day I experienced horrendous side effects, severe vertigo, nausea and vomting and anxiety
I need help from the members who have taken it or the brand name Suboxone. The oxycodone I have been taking since 2015 has lost effect therefore Doctor B prescribed Buprenorphine and Naloxone for me. The first day I experienced horrendous side effects, severe vertigo, nausea and vomting and anxiety
halperinchen
in
Restless Legs Syndrome
8 months ago
Suspected B12 deficiency
Hello everyone I found this group via thyroid UK group. It was there that they helpfully made me aware of my low b12 results. Please see results from November attached. I have lots of symptoms which I initially thought was thyroid issues but am now looking into B12 deficiency. I have an appt on
Hello everyone I found this group via thyroid UK group. It was there that they helpfully made me aware of my low b12 results. Please see results from November attached. I have lots of symptoms which I initially thought was thyroid issues but am now looking into B12 deficiency. I have an appt on
RedOne1
in
Pernicious Anaemia Society
4 months ago
Question about mood
does anyone else get depression like symptoms, anxiety like symptoms and just an overall flat affect as you wait the month out for your next injection? I was self injecting in between but the needle jabs are starting to really hurt now so I stopped.
does anyone else get depression like symptoms, anxiety like symptoms and just an overall flat affect as you wait the month out for your next injection? I was self injecting in between but the needle jabs are starting to really hurt now so I stopped.
Schpsych2414
in
Pernicious Anaemia Society
8 months ago
Imerslund-Gräsbeck one to know about
https://en.m.wikipedia.org/wiki/Imerslund%E2%80%93Gr%C3%A4sbeck_syndrome I had an argument last week with a Dr 'Fresh out the box' quoting the text book at me. He said the intrinsic factor antibody test was 95% accurate. So I retorted maybe I was one of the 5%! "That would be very unlikely." About 5
https://en.m.wikipedia.org/wiki/Imerslund%E2%80%93Gr%C3%A4sbeck_syndrome I had an argument last week with a Dr 'Fresh out the box' quoting the text book at me. He said the intrinsic factor antibody test was 95% accurate. So I retorted maybe I was one of the 5%! "That would be very unlikely." About 5
Oneash
in
Pernicious Anaemia Society
4 months ago
Methylmalonic Acid Test
Can anyone tell me whether the MMA test can be obtained through the NHS? I saw a GP yesterday (I am still dizzy following falling backwards again a week ago) I am going for my blood test on Thursday to see if my folate level has improved after taking a folate /B12 supplement for 4 months on instruction
Can anyone tell me whether the MMA test can be obtained through the NHS? I saw a GP yesterday (I am still dizzy following falling backwards again a week ago) I am going for my blood test on Thursday to see if my folate level has improved after taking a folate /B12 supplement for 4 months on instruction
LynneG
in
Pernicious Anaemia Society
8 months ago
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
8 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
8 months ago
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
8 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
8 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
8 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
8 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
8 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
8 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
8 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
8 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
8 months 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
8 months ago
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