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Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
2 months ago
Symprove for digestive issues?
I have read that some people have had help with Symprove. What symptoms would you say it helps with most. I have some IBS like pains, some bloating and nausea and general nerve pain through my abdomen. I have had loads of scans, tests and consults and they all say nothing serious appears to be going
I have read that some people have had help with Symprove. What symptoms would you say it helps with most. I have some IBS like pains, some bloating and nausea and general nerve pain through my abdomen. I have had loads of scans, tests and consults and they all say nothing serious appears to be going
Chickens44
in
Pernicious Anaemia Society
2 months ago
what next?
I thought I’d give you an update on my husband. You guys are very helpful in his reduction in ropinerole last year, he was taking 8 mg a day and is currently down to four but cannot get past 4 mg. Since last he’s been diagnosed with Waldenstrom Macroglobulinemia lymphoma, and is currently flaring
I thought I’d give you an update on my husband. You guys are very helpful in his reduction in ropinerole last year, he was taking 8 mg a day and is currently down to four but cannot get past 4 mg. Since last he’s been diagnosed with Waldenstrom Macroglobulinemia lymphoma, and is currently flaring
Sandalsforever
in
Restless Legs Syndrome
2 months ago
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First set of bloods after starting T3
Hello again everyone! I wonder if I could get some views please on my latest blood results before speaking to the consultant next week? I’ve now been taking T3 for 8 weeks. 5mcg twice a day. Thats along with 50mcg of levothyroxine. (It was 75 prior to starting T3) Bloods before that (February) were
Hello again everyone! I wonder if I could get some views please on my latest blood results before speaking to the consultant next week? I’ve now been taking T3 for 8 weeks. 5mcg twice a day. Thats along with 50mcg of levothyroxine. (It was 75 prior to starting T3) Bloods before that (February) were
Loopnova
in
Thyroid UK
2 months ago
Iron bloods
can someone advise please
can someone advise please
ninja1
in
Heart Rhythm Disorders Support
2 months ago
Iron bloods
what does this mean please
what does this mean please
ninja1
in
Heart Rhythm Disorders Support
2 months ago
Any suggestions please? Suffering extreme fatigue weakness.
Results below of blue horizon thyroid test.Test taken at 9.30am I do not take any thyroid medication. Thank you CHEMISTRY / IMMUNOASSAY * Vitamin D (25 OH) 128 50 - 200 nmol/L Optimal 75-200 Adequate 50-<75 Insufficient 25 -<50 Deficient <25 * Magnesium H 1.04 0.66 - 0.99 mmol/L * CRP <0.60
Results below of blue horizon thyroid test.Test taken at 9.30am I do not take any thyroid medication. Thank you CHEMISTRY / IMMUNOASSAY * Vitamin D (25 OH) 128 50 - 200 nmol/L Optimal 75-200 Adequate 50-<75 Insufficient 25 -<50 Deficient <25 * Magnesium H 1.04 0.66 - 0.99 mmol/L * CRP <0.60
lovedoncebefore
in
Thyroid UK
2 months ago
Carnivore Keto Issues and Concerns Especially For Parkinson's.
I've been reading and listing some random thoughts associated to the carnivore keto diets that may be true or untrue, unhealthy and dangerous, or just propaganda. Seems though that dairy, beef, pork, chicken, eggs, meats, fish, and animal products etc. should be avoided in favor of a healthier alternative
I've been reading and listing some random thoughts associated to the carnivore keto diets that may be true or untrue, unhealthy and dangerous, or just propaganda. Seems though that dairy, beef, pork, chicken, eggs, meats, fish, and animal products etc. should be avoided in favor of a healthier alternative
Thal
in
Cure Parkinson's
2 months ago
Running with PV?
Hello. Have any of you with PV had medical advice re. which types of cardio exercise are good or to avoid? I wondered if modest levels of running have any meaningful impact on RBC production/ full blood count and iron?
Hello. Have any of you with PV had medical advice re. which types of cardio exercise are good or to avoid? I wondered if modest levels of running have any meaningful impact on RBC production/ full blood count and iron?
RoundTheWorld
in
MPN Voice
2 months ago
An Enlightening Endocrine Adventure
After appeasing an endocrinologist worried about my suppressed TSH by a cunning lab trick -- withholding NDT for three days before going for the blood work -- I realized I needed to titrate up the dose. Many thanks to those who replied with their NDT experience. I cranked it up to nearly double what
After appeasing an endocrinologist worried about my suppressed TSH by a cunning lab trick -- withholding NDT for three days before going for the blood work -- I realized I needed to titrate up the dose. Many thanks to those who replied with their NDT experience. I cranked it up to nearly double what
RockyPath
in
Thyroid UK
2 months ago
Liver Beef Glandular pills for iron?
Hi. Has anyone tried Liver Beef Glandular pills to increase iron rather than iron pills directly? My naturopathic doctor prefers this for RLS, because he says that iron pills are oxidizing. My Ferritin is ~80. And, I'm new here -- super helpful community. Now that I understand RLS, as I look back,
Hi. Has anyone tried Liver Beef Glandular pills to increase iron rather than iron pills directly? My naturopathic doctor prefers this for RLS, because he says that iron pills are oxidizing. My Ferritin is ~80. And, I'm new here -- super helpful community. Now that I understand RLS, as I look back,
JaggySr
in
Restless Legs Syndrome
2 months ago
Hair Loss on Yuflyma
Hi everyone I have been on Yuflyma for 6 weeks and have noticed an increasing amount of hair loss. I am also on Folic acid seven days a week as I was previously on Methotrexate , but stopped the methotrexate a few weeks ago. I had been on Methotrxate since May of last year, both tablets and then metoject
Hi everyone I have been on Yuflyma for 6 weeks and have noticed an increasing amount of hair loss. I am also on Folic acid seven days a week as I was previously on Methotrexate , but stopped the methotrexate a few weeks ago. I had been on Methotrxate since May of last year, both tablets and then metoject
MDWinter23
in
NRAS
2 months ago
Iron levels.
Hi . I've had 12 transfusions after internal bleeding and surgery in April. My hb was at 6 before the transfusion. My levels are as below. Is this sufficient or would I still need a supplement. I am weaned off pramipexole now but while is hospital I was given tramacet and that was helping my legs.
Hi . I've had 12 transfusions after internal bleeding and surgery in April. My hb was at 6 before the transfusion. My levels are as below. Is this sufficient or would I still need a supplement. I am weaned off pramipexole now but while is hospital I was given tramacet and that was helping my legs.
AzraCG
in
Restless Legs Syndrome
2 months ago
increasing T3 advice
Hello, My endo has told me this week to increase from 5mcg T3 to 7.5mcg and if that feels ok / no palpitations after a week to go up to 10mcg. I’m also on levo 150 and have been told to go up to 175 at weekends. I posted my recent blood results on Monday. All vits tested December and optimal. Iron
Hello, My endo has told me this week to increase from 5mcg T3 to 7.5mcg and if that feels ok / no palpitations after a week to go up to 10mcg. I’m also on levo 150 and have been told to go up to 175 at weekends. I posted my recent blood results on Monday. All vits tested December and optimal. Iron
HotelHurricaine
in
Thyroid UK
2 months ago
Anyone else with Jak2 PV have difficulty walking and leg pain?
I'm new here and really happy I found this forum. I've been diagonsed with Jak2 positive PV a year ago, after feeling unwell for a couple of years, and after my blood tests have been abnormal for quite a while. For the past year, I've been on aspirin and Phlebotomies, which have kept my Hematocrit under
I'm new here and really happy I found this forum. I've been diagonsed with Jak2 positive PV a year ago, after feeling unwell for a couple of years, and after my blood tests have been abnormal for quite a while. For the past year, I've been on aspirin and Phlebotomies, which have kept my Hematocrit under
Panda2014
in
MPN Voice
2 months ago
Help with Blood Results
Good Afternoon i have just received some blood results back and i am slightly miffed that my FT3 is out of range and that my TSH has increased. (bloods were taken at 8.30am with just having water that morning) i am on 100mg of levothyroxine (i always have the same brand which is mercury) and have been
Good Afternoon i have just received some blood results back and i am slightly miffed that my FT3 is out of range and that my TSH has increased. (bloods were taken at 8.30am with just having water that morning) i am on 100mg of levothyroxine (i always have the same brand which is mercury) and have been
Holeintheriver1
in
Thyroid UK
2 months ago
understanding results
Hi I just had my thyroid checked and I've been told I'm in excellent health. But I'm so exhausted and in pain quite a lot and I don't feel in excellent health! I also have a diagnosis of endometriosis. not currently on any thyroid medication thyroid: tsh 2.01 (0.27 - 4.2) t3 4.5 (3.1 - 6.8) thyroxine
Hi I just had my thyroid checked and I've been told I'm in excellent health. But I'm so exhausted and in pain quite a lot and I don't feel in excellent health! I also have a diagnosis of endometriosis. not currently on any thyroid medication thyroid: tsh 2.01 (0.27 - 4.2) t3 4.5 (3.1 - 6.8) thyroxine
eixip
in
Thyroid UK
2 months ago
sudden increase in PD symptoms after Repinole
my husband has PD and has suffered with RLS for most of his life.Since his diagnosis in 2020 the episodes have got worse,till he was up 6 to 10 times a night,and sometimes fell asleep while standing and then fell over.Iron supplements,magnesium, vibrating leg wraps had no effect,and 8 days ago he was
my husband has PD and has suffered with RLS for most of his life.Since his diagnosis in 2020 the episodes have got worse,till he was up 6 to 10 times a night,and sometimes fell asleep while standing and then fell over.Iron supplements,magnesium, vibrating leg wraps had no effect,and 8 days ago he was
CRMACK1948
in
Cure Parkinson's
2 months ago
Iron infusion
I had an iron infusion. Finished it last week. My ferritin was 44 prior to infusion. I have to have a blood test to see if it went up. Just curious how long before you feel better. I still feel the same, very tired. Came off mirapex a month ago and waiting for my dr. to give me a new medication.
I had an iron infusion. Finished it last week. My ferritin was 44 prior to infusion. I have to have a blood test to see if it went up. Just curious how long before you feel better. I still feel the same, very tired. Came off mirapex a month ago and waiting for my dr. to give me a new medication.
lorri214
in
Restless Legs Syndrome
2 months ago
Advice please
I thought I was going mad at first, my RLS is horrendous and affecting me at work. Poor and very little sleep, getting confused and making mistakes, forgetting information. The RLS was starting early on a morning and nothing I could do to relieve it. I was taking too many cocodomoI out of desperation
I thought I was going mad at first, my RLS is horrendous and affecting me at work. Poor and very little sleep, getting confused and making mistakes, forgetting information. The RLS was starting early on a morning and nothing I could do to relieve it. I was taking too many cocodomoI out of desperation
Coopersmum
in
Restless Legs Syndrome
2 months ago
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