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ET symptoms
Hi, hoping someone on this forum may be able to assist in obtaining peer reviewed information that states that symptoms are not dependent on platelet counts. Husband is ET, JAK2 positive and has severe fatigue, concentration problems and brain fog.He has followed all the advice of exercise and diet
Hi, hoping someone on this forum may be able to assist in obtaining peer reviewed information that states that symptoms are not dependent on platelet counts. Husband is ET, JAK2 positive and has severe fatigue, concentration problems and brain fog.He has followed all the advice of exercise and diet
Ona54
in
MPN Voice
2 months ago
switching/alternating Hydroxocobalamin and cyanocobalamin?
excuse my ignorance but I thought I’d check with those that know before I blindly go doing something silly. I was reading the NHS B12 pages and saw they only offer hydroxcobalamin and they suggest this lasts longer. So I’ve ordered some Pascoe to try. I have stock of cyanocobalamin and use that twice
excuse my ignorance but I thought I’d check with those that know before I blindly go doing something silly. I was reading the NHS B12 pages and saw they only offer hydroxcobalamin and they suggest this lasts longer. So I’ve ordered some Pascoe to try. I have stock of cyanocobalamin and use that twice
Regenallotment
in
Pernicious Anaemia Society
2 months ago
Does anyone have idea or notice a pattern why fingerprick blood tests work sometimes & not others& why easier to get blood sometimes please?
Hello...anyone wuth similar issues please?I do what I thinks the same everytime, keep well hydrated, warm shower, move abt, circle arms, stand up. Wash hands warm water, drank cup water at 5am, then 6am, then 7, & tested at 7.30, yet last wks which took 4 fingers to get enough for advanced thyroid check
Hello...anyone wuth similar issues please?I do what I thinks the same everytime, keep well hydrated, warm shower, move abt, circle arms, stand up. Wash hands warm water, drank cup water at 5am, then 6am, then 7, & tested at 7.30, yet last wks which took 4 fingers to get enough for advanced thyroid check
Jo5454
in
Thyroid UK
2 months ago
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Follow-up with haematologist
I saw my (private) haematologist last night and confessed my B12 EOD habit. It took him several minutes to come down off the ceiling and have a proper discussion with me as I made my argument: that, if I'd followed the NICE protocol I wouldn't be where I am today (mostly functioning well), I wouldn't
I saw my (private) haematologist last night and confessed my B12 EOD habit. It took him several minutes to come down off the ceiling and have a proper discussion with me as I made my argument: that, if I'd followed the NICE protocol I wouldn't be where I am today (mostly functioning well), I wouldn't
Orchard33
in
Pernicious Anaemia Society
2 months ago
Been told "no longer need injections"
So I had my latest b12 injection yesterday. I just received a text from the doctor saying that "I no longer need B12 injections and can have oral supplements from October". I don't understand this as initially when I was first diagnosed I was given oral supplements to try for 2 months initially. My serum
So I had my latest b12 injection yesterday. I just received a text from the doctor saying that "I no longer need B12 injections and can have oral supplements from October". I don't understand this as initially when I was first diagnosed I was given oral supplements to try for 2 months initially. My serum
Dfthbhjj
in
Pernicious Anaemia Society
2 months ago
On 60 mgs, potassium low, magnesium low, cramps, dizzy, fatigue ,the runs etc...
Due to reduce to 40mgs tomorrow but really feeling very strange, balance off, BP low for me, I'm on 2 x meds for BP which are contraindicated with steroids as should increase BP?? The symptoms are consistent with low potassium levels (call from hospital to tell me that) but worsening. Eating everything
Due to reduce to 40mgs tomorrow but really feeling very strange, balance off, BP low for me, I'm on 2 x meds for BP which are contraindicated with steroids as should increase BP?? The symptoms are consistent with low potassium levels (call from hospital to tell me that) but worsening. Eating everything
Fatsiajaponica
in
PMRGCAuk
2 months ago
Help with iron results
Posting again as for some reason had no replies last time. Recently had an iron panel and ferritin blood test with following results. Ferritin - 46 (13-150) Iron - 21.6 (6.6-26) Unsaturated iron binding - 21.3 LOW (24.2-70.1) Total iron binding capacity - 43 (41-77) Iron binding saturation
Posting again as for some reason had no replies last time. Recently had an iron panel and ferritin blood test with following results. Ferritin - 46 (13-150) Iron - 21.6 (6.6-26) Unsaturated iron binding - 21.3 LOW (24.2-70.1) Total iron binding capacity - 43 (41-77) Iron binding saturation
Becsf
in
Thyroid UK
2 months ago
Blood Test Questions
I've been looking at the last lot of blood tests that my doctor did and was wondering if the serum ferritin level is low or ok. I had the blood tests a couple of months ago and have had no feedback from the doctor at all.On the NHS app for some things it seems to show where your level sits against the
I've been looking at the last lot of blood tests that my doctor did and was wondering if the serum ferritin level is low or ok. I had the blood tests a couple of months ago and have had no feedback from the doctor at all.On the NHS app for some things it seems to show where your level sits against the
Dfthbhjj
in
Pernicious Anaemia Society
2 months ago
Updated blood test results. Do I need to take Folate supplements?
I recently got some brilliant help and advice on my recent blood tests https://healthunlocked.com/thyroiduk/posts/151105457/help-with-test-results I was awaiting results on my Ferritin and Folate levels and I have added them to list below. Magnesium H 1.0 0.7 - 1.0 mmol/L CRP <0.60 <5.0 mg/L Ferritin
I recently got some brilliant help and advice on my recent blood tests https://healthunlocked.com/thyroiduk/posts/151105457/help-with-test-results I was awaiting results on my Ferritin and Folate levels and I have added them to list below. Magnesium H 1.0 0.7 - 1.0 mmol/L CRP <0.60 <5.0 mg/L Ferritin
Maughany
in
Thyroid UK
2 months ago
Iron Test
Hello again, Having been advised that my ferritin level of 30 ug/L indicated deficiency, I have now had an iron function test through Medichecks and would be grateful for some guidance on the results: Iron 22.6 umol/L (10-30) TIBC 67.5 umol/L (45-81) UIBC 44.9umol/L (13-56) Transferrin Saturation
Hello again, Having been advised that my ferritin level of 30 ug/L indicated deficiency, I have now had an iron function test through Medichecks and would be grateful for some guidance on the results: Iron 22.6 umol/L (10-30) TIBC 67.5 umol/L (45-81) UIBC 44.9umol/L (13-56) Transferrin Saturation
ValTay
in
Thyroid UK
2 months ago
Recent iron results - not sure what to do now
Hi everyone, I've recently had an iron panel (NHS) after 10 weeks of supplementing with 1 then 2 x Three arrows per day, as well as taking cacao liquid (as recommended here) in the hope of increasing my stubbornly low ferritin. However I'm not sure how to read the results so any advice very welcome
Hi everyone, I've recently had an iron panel (NHS) after 10 weeks of supplementing with 1 then 2 x Three arrows per day, as well as taking cacao liquid (as recommended here) in the hope of increasing my stubbornly low ferritin. However I'm not sure how to read the results so any advice very welcome
Becsf
in
Thyroid UK
2 months ago
denosumab (Prolia/Pred
Hi allI went for my bone scan last week and unfortunately osteoporosis has been diagnosed. My GP has suggested the injection denosumab (Prolia,) injection every 6 months, I have done some research on this treatment, possible side effects a bit scary. Also Prolia interacts with Pred according to the
Hi allI went for my bone scan last week and unfortunately osteoporosis has been diagnosed. My GP has suggested the injection denosumab (Prolia,) injection every 6 months, I have done some research on this treatment, possible side effects a bit scary. Also Prolia interacts with Pred according to the
Den73
in
PMRGCAuk
2 months ago
I got my results back for pernicious anemia! Looks like folate deficiency, but would really appreciate any comments
I finally got my blood test results back for pernicious anemia. It looks like I don't have it, and that my problem is folate deficiency. And low reticulocyte count which would be caused by low folate I suppose. My other results are all in range, though active B12 could maybe be higher I am thinking
I finally got my blood test results back for pernicious anemia. It looks like I don't have it, and that my problem is folate deficiency. And low reticulocyte count which would be caused by low folate I suppose. My other results are all in range, though active B12 could maybe be higher I am thinking
Carrie234
in
Pernicious Anaemia Society
2 months ago
Buprenorphine side effects (hot sweats)
I use a low dose of buprenorphine (2x 10mcg/hr weekly patches) to successfully control my RLS. The side effects which cause me concern, in addition to the usual constipation etc., are nausea and hot sweats. I have reduced the nausea to a nearly acceptable level by staggering the patches (they only
I use a low dose of buprenorphine (2x 10mcg/hr weekly patches) to successfully control my RLS. The side effects which cause me concern, in addition to the usual constipation etc., are nausea and hot sweats. I have reduced the nausea to a nearly acceptable level by staggering the patches (they only
davchar23
in
Restless Legs Syndrome
2 months ago
Too much b12 please help?
Hi everyone, I'm reaching out for some guidance and advice. I've recently experienced tingling and muscle aches and neck and leg tingling , and I'm concerned it might be due to having too much B12 in my system. I had a blood test three weeks after my last B12 injection, and the results showed levels
Hi everyone, I'm reaching out for some guidance and advice. I've recently experienced tingling and muscle aches and neck and leg tingling , and I'm concerned it might be due to having too much B12 in my system. I had a blood test three weeks after my last B12 injection, and the results showed levels
Damacian
in
Pernicious Anaemia Society
2 months ago
support the Pernicious Anaemia Society
you can donate here: https://www.justgiving.com/page/leannenivenruns and if you are not already, please become a member of the Pernicious
Anaemia
Society via our website. Our March newsletter will be out soon! thank you to those who consistently support us here and in other media.
you can donate here: https://www.justgiving.com/page/leannenivenruns and if you are not already, please become a member of the Pernicious
Anaemia
Society via our website. Our March newsletter will be out soon! thank you to those who consistently support us here and in other media.
PAScomms
in
Pernicious Anaemia Society
7 months ago
Increase injections?
I currently self inject once a week - I started about 3 months ago as I was having lots of pins and needles and burning in my hands, arms and feet. GP agreed to 10 weekly injections and I’ve continued with those without mentioning the self injecting. I always had a really strong reaction one or two days
I currently self inject once a week - I started about 3 months ago as I was having lots of pins and needles and burning in my hands, arms and feet. GP agreed to 10 weekly injections and I’ve continued with those without mentioning the self injecting. I always had a really strong reaction one or two days
Alilev
in
Pernicious Anaemia Society
2 months ago
Vitamin usage question
I am working on getting my vitamin levels in a better range. But, what happens when I hit that range? Do I continue with the same higher strength vitamins or do I need to find a different one for maintenance? Also, how often do I test Folate, vit d and b? I am taking very low iron and plan to test
I am working on getting my vitamin levels in a better range. But, what happens when I hit that range? Do I continue with the same higher strength vitamins or do I need to find a different one for maintenance? Also, how often do I test Folate, vit d and b? I am taking very low iron and plan to test
Obsdian
in
Thyroid UK
2 months ago
Recent blood test – Why do I feel so tired?
I've had folate deficiency
anaemia
in the past. For context, diet is healthy (gluten, dairy, egg free, high protein, lots of fruits and vegetables and healthy fats, low sugar, moderate complex carbs).
I've had folate deficiency
anaemia
in the past. For context, diet is healthy (gluten, dairy, egg free, high protein, lots of fruits and vegetables and healthy fats, low sugar, moderate complex carbs).
Zazbag
in
Thyroid UK
4 months ago
B complex includes b12
I have been doing SI EOD Hydroxocobalamin for 8 weeks now, with cofactors. I have just seen a nutritionist to see if I can get my gut back to optimum health. She has recommended a few supplements that she think will help, one of which is a B complex, which includes folate, and also some Methylcobalamin
I have been doing SI EOD Hydroxocobalamin for 8 weeks now, with cofactors. I have just seen a nutritionist to see if I can get my gut back to optimum health. She has recommended a few supplements that she think will help, one of which is a B complex, which includes folate, and also some Methylcobalamin
Chickens44
in
Pernicious Anaemia Society
2 months ago
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