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My Labs are back- recommendations pretty please.
Quick summary- RLS for last 20yrs but self endured with no meds until Covid hit and exacerbated symptoms x100. Went to sleep MD and he just started with scripting meds….Gabapentin, Pregabalin, Busibar, Doxepin, Requip, Lunesta. None of these really worked…Requip kinda did but then it did not. So
Quick summary- RLS for last 20yrs but self endured with no meds until Covid hit and exacerbated symptoms x100. Went to sleep MD and he just started with scripting meds….Gabapentin, Pregabalin, Busibar, Doxepin, Requip, Lunesta. None of these really worked…Requip kinda did but then it did not. So
Ddski5
in
Restless Legs Syndrome
4 months ago
Confused
So I had an active b12 test done in August and it showed borderline normal at the low end. I was told to do am MMA blood test and supplement. The MMA blood test came back normal so assumed I was OK and that the supplement would raise my levels. I was taking cyanocobalamin. I took this for 4 months and
So I had an active b12 test done in August and it showed borderline normal at the low end. I was told to do am MMA blood test and supplement. The MMA blood test came back normal so assumed I was OK and that the supplement would raise my levels. I was taking cyanocobalamin. I took this for 4 months and
Popcorn12345
in
Pernicious Anaemia Society
4 months ago
Venetoclax and low Neutrophils
Ok, so now been on highest dose of Venetoclax with Ibrutinib and Neutrophils count down to 0.61. Only started going down since taking higher dose. Had one stomach injection of something but still high so now been given 4 weekly injections to do myself.Been told it's probably due to ramp up and may lower
Ok, so now been on highest dose of Venetoclax with Ibrutinib and Neutrophils count down to 0.61. Only started going down since taking higher dose. Had one stomach injection of something but still high so now been given 4 weekly injections to do myself.Been told it's probably due to ramp up and may lower
Guinness4822
in
CLL Support
4 months ago
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Hi ,has anyone else had high cholesterol levels since they had pernicious anaemia diagnosed, is this linked ?
Hi ,i have pernicious
anaemia
which i now self inject for the last 7 yrs , my choesterol has been at 8 + since then , i also have fibromyalgia ,just been put on rosevastatin 5mg , also have gerd.
Hi ,i have pernicious
anaemia
which i now self inject for the last 7 yrs , my choesterol has been at 8 + since then , i also have fibromyalgia ,just been put on rosevastatin 5mg , also have gerd.
lcunliffegizmo123
in
British Heart Foundation
8 months ago
So new results.
So been a while and just want the lasts posts forgot about and just treat this as now and what to do next. So I’ve been taking 100mcg Levo for two months and got my bloods done only available slot was around 11am so it is what it is. I hadn’t been taking supplements in this period to see how my levels
So been a while and just want the lasts posts forgot about and just treat this as now and what to do next. So I’ve been taking 100mcg Levo for two months and got my bloods done only available slot was around 11am so it is what it is. I hadn’t been taking supplements in this period to see how my levels
Dshadzz07
in
Thyroid UK
5 months ago
short term memory
hello everyone!!! Hope everyone is well Has anyone here experienced some memory issues while on ibruvica and venetoclax treatments Unfortunately my mother can only handle 100mg of venetoclax a day for a couple months now and I see she’s forgetting more easily or she seems a little off I had taken
hello everyone!!! Hope everyone is well Has anyone here experienced some memory issues while on ibruvica and venetoclax treatments Unfortunately my mother can only handle 100mg of venetoclax a day for a couple months now and I see she’s forgetting more easily or she seems a little off I had taken
Eirinik
in
CLL Support
5 months ago
vitamin results and advice on tweaking or changing supplements
Advice on supplements please and please tell me if I’m over thinking or worrying about this. I currently take: Better You Vit D with K2 / Thorne Basic B / Vegavero folate / Omega 3 fish oil / Magnesium / Zinc I’ve had my results back from Medichecks and would like some advice on what I can do to further
Advice on supplements please and please tell me if I’m over thinking or worrying about this. I currently take: Better You Vit D with K2 / Thorne Basic B / Vegavero folate / Omega 3 fish oil / Magnesium / Zinc I’ve had my results back from Medichecks and would like some advice on what I can do to further
Slowrunner1208
in
Thyroid UK
5 months ago
Query on changing brands and types
Hello all, I am desperately waiting for my usual Panpharma hydroxycobalamin acetate to come back onto the usual German shelves so I can get it ordered. I am on my last box now and bought some different to tide me over but it’s the 2ml product and I am not looking forward to having to use it. 2 questions
Hello all, I am desperately waiting for my usual Panpharma hydroxycobalamin acetate to come back onto the usual German shelves so I can get it ordered. I am on my last box now and bought some different to tide me over but it’s the 2ml product and I am not looking forward to having to use it. 2 questions
Rosydawn
in
Pernicious Anaemia Society
5 months ago
my bloods can anyone tell me what’s going off please
Eosinophil count - observation (42K..) 0.43 10^9/L [0.04 - 0.4] - Outside reference range Coded entry - Monocyte count - observation (42N..) 0.99 10^9/L [0.2 - 0.8] - Outside reference range Coded entry - Nucleated red blood cell count (4266.) 0 10^9/L [< 0] Coded entry - Mean cell haemoglobin level
Eosinophil count - observation (42K..) 0.43 10^9/L [0.04 - 0.4] - Outside reference range Coded entry - Monocyte count - observation (42N..) 0.99 10^9/L [0.2 - 0.8] - Outside reference range Coded entry - Nucleated red blood cell count (4266.) 0 10^9/L [< 0] Coded entry - Mean cell haemoglobin level
The16
in
Thyroid UK
5 months ago
Latest Blood Test Help
Hi brilliant minds, I hope you’re all well. Please could you have a quick look at my latest blood results and advise on anything you think isn’t as it should be... 🙏 I’m on 125mcg Levo but feel really tired most days and would sleep if I let myself! I think my iron is low (always is). I take Terra
Hi brilliant minds, I hope you’re all well. Please could you have a quick look at my latest blood results and advise on anything you think isn’t as it should be... 🙏 I’m on 125mcg Levo but feel really tired most days and would sleep if I let myself! I think my iron is low (always is). I take Terra
SleepingDisco
in
Thyroid UK
5 months ago
PALVE
I’m about to start b12 injections alternate days for two weeks then every 3 months. I appreciate this isn’t enough for neurological problems which I have. Should I ask for blood tests for folic acid before I start and then take every day .. and for how long? I’m not going down the path of SI for lots
I’m about to start b12 injections alternate days for two weeks then every 3 months. I appreciate this isn’t enough for neurological problems which I have. Should I ask for blood tests for folic acid before I start and then take every day .. and for how long? I’m not going down the path of SI for lots
Palum
in
Pernicious Anaemia Society
5 months ago
Coming Off Calquence (
I was put on Calquence (acalabrutinibam) 2 years ago due to Hemolytic Anemia. We tried prednisone for 3 years but every time they took me off my hemoglobin would drop and eventually it was determined I needed treatment. As of now my numbers are looking really good and I'm considering going off of it
I was put on Calquence (acalabrutinibam) 2 years ago due to Hemolytic Anemia. We tried prednisone for 3 years but every time they took me off my hemoglobin would drop and eventually it was determined I needed treatment. As of now my numbers are looking really good and I'm considering going off of it
susq9948
in
CLL Support
5 months ago
Swap?
Admin edit: Please note that it is illegal to supply injectible B12 for medical purposes without a prescription in the UK - this post has been closed to further responses. Hi Would anyone like to swap a box of hydroxocobalamin 1mg/1ml 10 ampoules in exchange for Cyanocobalamin 1mg/1ml 10 ampoules for
Admin edit: Please note that it is illegal to supply injectible B12 for medical purposes without a prescription in the UK - this post has been closed to further responses. Hi Would anyone like to swap a box of hydroxocobalamin 1mg/1ml 10 ampoules in exchange for Cyanocobalamin 1mg/1ml 10 ampoules for
Davy28
in
Pernicious Anaemia Society
5 months ago
Help please!! Question about breathlessness and heart rate
I have looked online and it says it’s the result of the
anaemia
but many people with b12 deficiency have these symptoms but do not have the
anaemia
so in these cases what would be the cause?
I have looked online and it says it’s the result of the
anaemia
but many people with b12 deficiency have these symptoms but do not have the
anaemia
so in these cases what would be the cause?
Amyflood246
in
Pernicious Anaemia Society
9 months ago
Help with results
Auto immune hypothyroid taking 100mcg Levo. Take iron tablets as ferritin usually 50-60 without. Suspected IBS and lots of gut issues. Feeling tired, aching weak feeling and some symptoms of low B12/folate but all results are in range and considered normal. Serum TSH level: 0.7 mIU/L (range 0.4
Auto immune hypothyroid taking 100mcg Levo. Take iron tablets as ferritin usually 50-60 without. Suspected IBS and lots of gut issues. Feeling tired, aching weak feeling and some symptoms of low B12/folate but all results are in range and considered normal. Serum TSH level: 0.7 mIU/L (range 0.4
pinklady756
in
Thyroid UK
5 months ago
Questions for Endocrinologist
NHS website advises hypoparathyroidism is associated with autoimmune conditions such as pernicious
anaemia
: https://www.nhs.uk/conditions/hypoparathyroidism/ - Thyroid ultrasound? - TPO always negative - implications on diagnosis?
NHS website advises hypoparathyroidism is associated with autoimmune conditions such as pernicious
anaemia
: https://www.nhs.uk/conditions/hypoparathyroidism/ - Thyroid ultrasound? - TPO always negative - implications on diagnosis?
Curious123
in
Thyroid UK
27 days ago
Why do I have a high pulse?
I was diagnosed with pernicious
anaemia
after asking to be tested. It turned out my Vitamin B12 level was 117 pmol/l. I was given cyancobalamine injections every 3 months. No loading doses. Later SI weekly with methylcobalamine I order from Germany.
I was diagnosed with pernicious
anaemia
after asking to be tested. It turned out my Vitamin B12 level was 117 pmol/l. I was given cyancobalamine injections every 3 months. No loading doses. Later SI weekly with methylcobalamine I order from Germany.
Bluemuffin
in
Pernicious Anaemia Society
1 year ago
High MCV
Hi, I have felt unwell for years was diagnosed with Fibromyalgia in 2018. Recently took an interest in my blood tests that have been took over the years and my MCV And MCH have been high since 2016 at least (can't see anything past 2o16 on patient access). This has never concerned the Drs although I
Hi, I have felt unwell for years was diagnosed with Fibromyalgia in 2018. Recently took an interest in my blood tests that have been took over the years and my MCV And MCH have been high since 2016 at least (can't see anything past 2o16 on patient access). This has never concerned the Drs although I
Ab197
in
Pernicious Anaemia Society
5 months ago
DI02 Test advice please
I have an appointment with my GP this week to discuss blood test results for other factors she believes maybe be affecting my health (liver function,
anaemia
etc). What is your best advice on getting her on board with the DIO2 test?
I have an appointment with my GP this week to discuss blood test results for other factors she believes maybe be affecting my health (liver function,
anaemia
etc). What is your best advice on getting her on board with the DIO2 test?
Cezza123
in
Thyroid UK
5 months ago
Familial Polycythemia
Hi,I wondered if anyone could advise on what care we should be getting for familial polycythemia? my 2 children (age 24 & 27) and I were tested at Guys a few years ago for the Jak2 gene, it was negative & we were discharged. Our blood tests always show a red cell count around 5.6, Haemoglobin 160
Hi,I wondered if anyone could advise on what care we should be getting for familial polycythemia? my 2 children (age 24 & 27) and I were tested at Guys a few years ago for the Jak2 gene, it was negative & we were discharged. Our blood tests always show a red cell count around 5.6, Haemoglobin 160
Vicky_b
in
MPN Voice
5 months ago
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