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Sickle-cell anaemia
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Postherpetic Neuralgia and B12
Not directly related to PA, but nonetheless of potential interest to those with PA as well as anyone with Postherpetic Neuralgia. (I currently have PHN and am taking methylcobalamin every day. Alongside capsaicin cream. Difficult to know if it is helping, but I think it is.) [i]
Patterns and Trends
Not directly related to PA, but nonetheless of potential interest to those with PA as well as anyone with Postherpetic Neuralgia. (I currently have PHN and am taking methylcobalamin every day. Alongside capsaicin cream. Difficult to know if it is helping, but I think it is.) [i]
Patterns and Trends
helvella
in
Pernicious Anaemia Society
1 year ago
Stiff person's disease and pernicious anemia connection - Celine Dion
I was just watching a news piece on Celine Dion where she announces that she can't do her 2023 tour because she's been suffering for a very long time with Stiff Person's Disease. The symptoms that she was talking about had me wondering if it had something to do with autoimmune deficiencies. And this
I was just watching a news piece on Celine Dion where she announces that she can't do her 2023 tour because she's been suffering for a very long time with Stiff Person's Disease. The symptoms that she was talking about had me wondering if it had something to do with autoimmune deficiencies. And this
EllaNore
in
Pernicious Anaemia Society
1 year ago
Buprenorphine
I am writing this to highlight how miraculous Buprenorphine has been for me and many others on this site. My sleep app shows how good my sleep is. I had never heard of buprenorphine until Shumbah posted that it had resolved her severe, refractory RLS. No neurologist has ever mentioned it. Like Shumbah
I am writing this to highlight how miraculous Buprenorphine has been for me and many others on this site. My sleep app shows how good my sleep is. I had never heard of buprenorphine until Shumbah posted that it had resolved her severe, refractory RLS. No neurologist has ever mentioned it. Like Shumbah
Joolsg
in
Restless Legs Syndrome
1 year ago
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B12 results-please can someone advise?
B12/folate level Serum vitamin B12 level > 2000 pg/mL [191.0 - 663.0]; Above high reference limit Serum folate level 2.0 ug/L [4.5 - 37.3]; <3.0 g/l : Indicative of folate deficiency and,if clinically appropriate, treatment shouldfollow BNF schedules.3.0 - 4.5 g/l : May suggest early deficiency
B12/folate level Serum vitamin B12 level > 2000 pg/mL [191.0 - 663.0]; Above high reference limit Serum folate level 2.0 ug/L [4.5 - 37.3]; <3.0 g/l : Indicative of folate deficiency and,if clinically appropriate, treatment shouldfollow BNF schedules.3.0 - 4.5 g/l : May suggest early deficiency
Milsean
in
Pernicious Anaemia Society
1 year ago
Hello and any advice for withdrawal?
I've been an RLS sufferer since I was 13 and I'm now 56. I've done all the good lifestyle stuff and nothing much helps. After 14 years in clinic with Professor Chaudhuri, told at every 6m appointment there have been no breakthroughs or new developments, have learned about iron infusion. I have requested
I've been an RLS sufferer since I was 13 and I'm now 56. I've done all the good lifestyle stuff and nothing much helps. After 14 years in clinic with Professor Chaudhuri, told at every 6m appointment there have been no breakthroughs or new developments, have learned about iron infusion. I have requested
familynash5
in
Restless Legs Syndrome
1 year ago
Query
E.T. Jak2 positive since 2018. On Hydroxicarbamide since autumn 2019. Bloods every three months and platelets reduced and more or less stable. This last six months, HCT has crept from 0.44 where it usually stays to 0.46.Dr suggested increasing HU to two tablets, four times a week and one tablet three
E.T. Jak2 positive since 2018. On Hydroxicarbamide since autumn 2019. Bloods every three months and platelets reduced and more or less stable. This last six months, HCT has crept from 0.44 where it usually stays to 0.46.Dr suggested increasing HU to two tablets, four times a week and one tablet three
Mcrg
in
MPN Voice
1 year ago
Your thyroid and iron deficiency stories, please
My ferritin is now 7. (Safe levels being 13 and above). Haemoglobin is 114 (Safe levels used to be 120 and above but now all of a sudden are 115. Surely just a coincidence that it’s women who experience lower iron levels, as a rule. Surely). MCHC, transferrin, serum iron etc all out of whack, too
My ferritin is now 7. (Safe levels being 13 and above). Haemoglobin is 114 (Safe levels used to be 120 and above but now all of a sudden are 115. Surely just a coincidence that it’s women who experience lower iron levels, as a rule. Surely). MCHC, transferrin, serum iron etc all out of whack, too
HowNowWhatNow
in
Thyroid UK
1 year ago
Help with interpretation of Vitamins please!
Help...do need supplementation; I was taking 2 Ferrous fumarate after low levels but reduced to 1 tablet now. I take 5000 vitamin D softgel Thorne Selenium ------------------------------------- Bloods taken 7 days ago: B12 : 678 (ng/L197 - 771) Folate 4.1 (ug/L-no range given) Sample slightly haemolysed
Help...do need supplementation; I was taking 2 Ferrous fumarate after low levels but reduced to 1 tablet now. I take 5000 vitamin D softgel Thorne Selenium ------------------------------------- Bloods taken 7 days ago: B12 : 678 (ng/L197 - 771) Folate 4.1 (ug/L-no range given) Sample slightly haemolysed
Lavender-Blue
in
Thyroid UK
1 year ago
General advice
Hi everyone I would appreciate any advice anyone can offer. Diagnosed with PA some years ago and have B12 shots every 8 weeks. End of last year noticed I was offish not myself and generally run down so asked for blood tests. Have been tested for everything under the sun but nothing has shown up. I was
Hi everyone I would appreciate any advice anyone can offer. Diagnosed with PA some years ago and have B12 shots every 8 weeks. End of last year noticed I was offish not myself and generally run down so asked for blood tests. Have been tested for everything under the sun but nothing has shown up. I was
Mullers26
in
Pernicious Anaemia Society
1 year ago
Advice on iron supplements
So... the next steps in taking control of my own treatment. I've been for my private bloods this morning including IFAB and gastric parietal antibodies, MMA and homocyeine. I've now resumed B12 SI and am taking vit D and K2 supplements. My ferrin is low, so I'm going to start iron supplements. I'd
So... the next steps in taking control of my own treatment. I've been for my private bloods this morning including IFAB and gastric parietal antibodies, MMA and homocyeine. I've now resumed B12 SI and am taking vit D and K2 supplements. My ferrin is low, so I'm going to start iron supplements. I'd
KBird01
in
Pernicious Anaemia Society
1 year ago
Advice on folic acid
I was diagnosed with pernicious anaemia in nov last year . I am 65 years old and also have hashimotos thyroiditis for 30 + yrs. I had been under my gp for low b12 and folate for over a year ( just given folic acid) as my b12 was not low enough to start injections. PA runs in our family though. In the
I was diagnosed with pernicious anaemia in nov last year . I am 65 years old and also have hashimotos thyroiditis for 30 + yrs. I had been under my gp for low b12 and folate for over a year ( just given folic acid) as my b12 was not low enough to start injections. PA runs in our family though. In the
Charlie27612
in
Pernicious Anaemia Society
1 year ago
different b12 form
diagnosed mid January with low b12 and PA. Originally told to do once a week cyanocobalamin and that just wasn’t helping so start of feb I did everyday injections of methylcobalamin at iv clinic (very $$$) finally found a doctor end of February who isn’t scared to prescribed and has me on a lot b12 of
diagnosed mid January with low b12 and PA. Originally told to do once a week cyanocobalamin and that just wasn’t helping so start of feb I did everyday injections of methylcobalamin at iv clinic (very $$$) finally found a doctor end of February who isn’t scared to prescribed and has me on a lot b12 of
Asb2
in
Pernicious Anaemia Society
1 year ago
Blood test results, vitamins and minerals
Hello everyone, I had my next blood test on 7th March, 9:45am, last levo dose was about 8:30am the day before. At the time of the test I was taking 50mcg Accord/Almus, increased from 25mcg on 12th January 2023 (this involved a brand change, in fact I've had 3 different brands so far). [u]Results/
Hello everyone, I had my next blood test on 7th March, 9:45am, last levo dose was about 8:30am the day before. At the time of the test I was taking 50mcg Accord/Almus, increased from 25mcg on 12th January 2023 (this involved a brand change, in fact I've had 3 different brands so far). [u]Results/
Myalikki
in
Thyroid UK
1 year ago
Confused newbie
I'm so glad I've found this forum, I've feel like I've learned a lot already from all of the experience's, advice and information provided by you amazing peeps 😊 I'm hoping you may be able to point me in the right direction and help me decide my next step as everytime I interact with my doctor's surgery
I'm so glad I've found this forum, I've feel like I've learned a lot already from all of the experience's, advice and information provided by you amazing peeps 😊 I'm hoping you may be able to point me in the right direction and help me decide my next step as everytime I interact with my doctor's surgery
woo79
in
Pernicious Anaemia Society
1 year ago
serum iron
While seeing a Dr at Leicester hospital I was asked to have a blood test, it wasn’t a fasting one. I have just had a letter, my serum iron was 12 there is no mention of anything else. The registrar has written “ Low iron can make restless legs worse and therefore I would be grateful if you could investigate
While seeing a Dr at Leicester hospital I was asked to have a blood test, it wasn’t a fasting one. I have just had a letter, my serum iron was 12 there is no mention of anything else. The registrar has written “ Low iron can make restless legs worse and therefore I would be grateful if you could investigate
Elsie77
in
Restless Legs Syndrome
1 year ago
Blood test results - Help Please!
Hi. I recently posted on here because I feel my doctor doesn't really take an interest in my hpothyroidism. And so I've recently taken some private bloods to check my doses are OK. I finally have all my tests back now. Can you help me interpret them please? I'm on 50mg of Levothyroxene. TSH level
Hi. I recently posted on here because I feel my doctor doesn't really take an interest in my hpothyroidism. And so I've recently taken some private bloods to check my doses are OK. I finally have all my tests back now. Can you help me interpret them please? I'm on 50mg of Levothyroxene. TSH level
mids_thyman
in
Thyroid UK
1 year ago
Checking on my understanding of Folic Acid
The friend I am giving information to and not advising has Serum Folate test results of 3.3 ug/l. It is my understanding it is thought that folic acid 5mg once a day should be taken to bring folic acid into mid range and then monitored to keep the level in mid range during any B12 supplementation.
The friend I am giving information to and not advising has Serum Folate test results of 3.3 ug/l. It is my understanding it is thought that folic acid 5mg once a day should be taken to bring folic acid into mid range and then monitored to keep the level in mid range during any B12 supplementation.
WIZARD6787
in
Pernicious Anaemia Society
1 year ago
Clarification of blood results
Hi Could anyone give me some clarity on my anaemia test results received today. Test was done by Monitor My Health but no reference ranges included so all components just say "normal" which is very uninformative and irritating. I know from this forum results need to be optimal. Results: Haemoglobin 128g
Hi Could anyone give me some clarity on my anaemia test results received today. Test was done by Monitor My Health but no reference ranges included so all components just say "normal" which is very uninformative and irritating. I know from this forum results need to be optimal. Results: Haemoglobin 128g
Hollybushroad
in
Thyroid UK
1 year ago
Intrinsic factor antibody result
Hi all, I've only just seen the result of an Intrinsic Factor Antibody test that was done in December before I started SI which I don't know how to interpret. I got a result of 2 u/ml (reference range is 0-24 u/ml). Is that a positive or a negative result? Does that confirm PA or not? Can someone explain
Hi all, I've only just seen the result of an Intrinsic Factor Antibody test that was done in December before I started SI which I don't know how to interpret. I got a result of 2 u/ml (reference range is 0-24 u/ml). Is that a positive or a negative result? Does that confirm PA or not? Can someone explain
Gecko22
in
Pernicious Anaemia Society
1 year ago
B12 injections stopped by GP
I have been on B12 injections for 4 years. (I had exhaustion, nausea, headaches etc and B12 was confirmed as being 40.)Had.loading dose and been having 3 monthly injections ever since. Intrinsic Factor was negative, but I do not have a restrictive diet. Anyway, GP decided to check my B12 when I asked
I have been on B12 injections for 4 years. (I had exhaustion, nausea, headaches etc and B12 was confirmed as being 40.)Had.loading dose and been having 3 monthly injections ever since. Intrinsic Factor was negative, but I do not have a restrictive diet. Anyway, GP decided to check my B12 when I asked
ValentinoBlue
in
Pernicious Anaemia Society
1 year ago
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