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Survey about patient care
Do you live with vasculitis, lupus, scleroderma or Sjögren's syndrome and are a UK resident? Please participate in the survey : https://ipsos.uk/RAIRDAsurvey2024 The aim of the survey is to provide valuable insights into what is working well and areas of improvement in patients' care. The survey in
Do you live with vasculitis, lupus, scleroderma or Sjögren's syndrome and are a UK resident? Please participate in the survey : https://ipsos.uk/RAIRDAsurvey2024 The aim of the survey is to provide valuable insights into what is working well and areas of improvement in patients' care. The survey in
zoe69
Vasculitis UK
in
Vasculitis UK
2 months ago
Help us develop a new information resource on lupus and the menopause
We're developing new information resources about lupus and the menopause. We want to find out what people want to know about the topic and how they want to learn that information, for example through a booklet, a webinar, or a video. You can tell us your thoughts via our short survey: https://forms.gle
We're developing new information resources about lupus and the menopause. We want to find out what people want to know about the topic and how they want to learn that information, for example through a booklet, a webinar, or a video. You can tell us your thoughts via our short survey: https://forms.gle
Debbie_kinsey
Administrator
in
LUPUS UK
2 months ago
new immune therapy phase 1-2 trial: targeting NK cells
The first patient with metastatic castration-resistant prostate cancer (mCRPC) has been dosed in the phase 1/2 CaRe PC trial (NCT06056791) evaluating INKmune, a biologic therapy https://www.targetedonc.com/view/first-patient-dosed-with-inkmune-therapy-in-phase-1-2-trial-for-mcrpc
The first patient with metastatic castration-resistant prostate cancer (mCRPC) has been dosed in the phase 1/2 CaRe PC trial (NCT06056791) evaluating INKmune, a biologic therapy https://www.targetedonc.com/view/first-patient-dosed-with-inkmune-therapy-in-phase-1-2-trial-for-mcrpc
Maxone73
in
Advanced Prostate Cancer
6 months ago
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Update On Eclipse Trial-another failure. Has LU-177 worked for anyone?
In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3=7. Subsequent PSA was non-detectable as tested every three months for the first two years
In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3=7. Subsequent PSA was non-detectable as tested every three months for the first two years
SViking
in
Advanced Prostate Cancer
6 months ago
The Flare That Keeps on Giving
I was diagnosed with PMR in August, 2022. I also have multiple sclerosis, autoimmune thyroid disease (Grave’s) and Sjogren’s Disease. With a few ups and downs when I had to temporarily increase the dose before dropping back to just above where I had been before the flare, my taper using DL’s slow 5 week
I was diagnosed with PMR in August, 2022. I also have multiple sclerosis, autoimmune thyroid disease (Grave’s) and Sjogren’s Disease. With a few ups and downs when I had to temporarily increase the dose before dropping back to just above where I had been before the flare, my taper using DL’s slow 5 week
Donna5658
in
PMRGCAuk
2 months ago
Recent PSA test result no longer “undetectable.” What’s next?
After 5+ years of measuring “undetectable” with my PSA results I recently measured 0.24 NG/ML which I’m assuming my PCA is becoming active again. I see my oncologist on Monday, 8 Jan for a follow-up appt. Can anyone share with me what the likely next course of action will be?
After 5+ years of measuring “undetectable” with my PSA results I recently measured 0.24 NG/ML which I’m assuming my PCA is becoming active again. I see my oncologist on Monday, 8 Jan for a follow-up appt. Can anyone share with me what the likely next course of action will be?
Woodman33
in
Advanced Prostate Cancer
6 months ago
Nutrition and Autoimmune Thyroid disease: An expert talk
[i]TONIGHT: Join Nicole Goode, (Sunday 21st April 2024, 7pm) for an informative and engaging online expert talk on nutrition and autoimmune thyroid disease![/i] [i]Book your place via Eventbrite at: [/i] https://www.eventbrite.co.uk/e/nutrition-and-autoimmune-thyroid-disease-talk-by-nicole-goode-registration
[i]TONIGHT: Join Nicole Goode, (Sunday 21st April 2024, 7pm) for an informative and engaging online expert talk on nutrition and autoimmune thyroid disease![/i] [i]Book your place via Eventbrite at: [/i] https://www.eventbrite.co.uk/e/nutrition-and-autoimmune-thyroid-disease-talk-by-nicole-goode-registration
helvella
Thyroid UK
in
Thyroid UK
2 months ago
Rising PSA … Clear PSMA SCAN
My husband sees Dr. Rahul Aggarwal at UCSF. I’m surprised by his treatment plan. hubby has been on Lupron & NUBEQA since April. At first it brought PSA down but now it is up to 6.5 His last PSMA SCAN was in October when PSA was 4.3 Next PSMA scan is mid January. Aggarwal says PSA # is no longer of
My husband sees Dr. Rahul Aggarwal at UCSF. I’m surprised by his treatment plan. hubby has been on Lupron & NUBEQA since April. At first it brought PSA down but now it is up to 6.5 His last PSMA SCAN was in October when PSA was 4.3 Next PSMA scan is mid January. Aggarwal says PSA # is no longer of
JolleySprings
in
Advanced Prostate Cancer
6 months ago
Lupus rash?
I have suffered many different symptoms for a period approaching 15 years. About 4 years ago my GP said that I had too many symptoms across multiple systems and there was nothing more he could do for me. He referred me to the hospital but I’m still waiting four years down the line. I discussed Lupus
I have suffered many different symptoms for a period approaching 15 years. About 4 years ago my GP said that I had too many symptoms across multiple systems and there was nothing more he could do for me. He referred me to the hospital but I’m still waiting four years down the line. I discussed Lupus
Dontknowwhattodo
in
LUPUS UK
2 months ago
Good news on memory following B12 treatment
Hi, some of the regular posters may remember me posting in absolute despair last autumn about my husband’s cognitive issues and extreme memory loss. I’m now posting an update in case it helps anyone else in his position. In summary he had experienced symptoms over a couple of decades since he was twenty
Hi, some of the regular posters may remember me posting in absolute despair last autumn about my husband’s cognitive issues and extreme memory loss. I’m now posting an update in case it helps anyone else in his position. In summary he had experienced symptoms over a couple of decades since he was twenty
Zmalp
in
Pernicious Anaemia Society
2 months ago
Blood test positive lupus
Recently had bloods done due to a few skin rashes and I looked at the results and some say lupus positive I need more bloods done tomorrow but haven't spoke to the doctor yet but looked online about lupus and a lot of what I'm having seems to all add up to lupus my head is all over the place
Recently had bloods done due to a few skin rashes and I looked at the results and some say lupus positive I need more bloods done tomorrow but haven't spoke to the doctor yet but looked online about lupus and a lot of what I'm having seems to all add up to lupus my head is all over the place
Debz1974
in
LUPUS UK
2 months ago
Parathyroid
I am booked in for a Parathyroidectomy and I just wondered whether my APS, as an autoimmune disease, could have had something to do with parathyroid condition? Thank you.
I am booked in for a Parathyroidectomy and I just wondered whether my APS, as an autoimmune disease, could have had something to do with parathyroid condition? Thank you.
Raschen
in
Hughes Syndrome APS Forum
2 months ago
Blood results help
Hi I have had blood test tsh is one (range 0.4 to 5) and T4 is 14 ( range is 9 to 19). Also had an ultrasound which showed altered echotexture but no enlargement of thyroid. Are these results OK? Have symptoms of underactive thyroid but results all in range. Thanks
Hi I have had blood test tsh is one (range 0.4 to 5) and T4 is 14 ( range is 9 to 19). Also had an ultrasound which showed altered echotexture but no enlargement of thyroid. Are these results OK? Have symptoms of underactive thyroid but results all in range. Thanks
Lolly2564
in
Thyroid UK
2 months ago
Other blood results
I now have more results Serum folate 14.3 (3.1-17.5) Ferritin 138 (13-150) Iron 14 (5-28) B12 280 (200-940) Since they are in the range ‘everything is normal’! The coeliac one was clear so I can now try gluten free for 3 months to see if it makes any changes. But I am still tired, muscle aches
I now have more results Serum folate 14.3 (3.1-17.5) Ferritin 138 (13-150) Iron 14 (5-28) B12 280 (200-940) Since they are in the range ‘everything is normal’! The coeliac one was clear so I can now try gluten free for 3 months to see if it makes any changes. But I am still tired, muscle aches
Purple450
in
Thyroid UK
2 months ago
new member
hi everyone l joined this group today was wondering could l get any advice, am 38 been recently diagnosed with underactive thyroid l am currently on 100mg of Lev tablets but l still feel tired l have put on so much weigh in past few years and didn’t know what was causing it, I have bought the semuglutide
hi everyone l joined this group today was wondering could l get any advice, am 38 been recently diagnosed with underactive thyroid l am currently on 100mg of Lev tablets but l still feel tired l have put on so much weigh in past few years and didn’t know what was causing it, I have bought the semuglutide
Preciouspearl
in
Thyroid UK
2 months ago
Lupus re-diagnosis UCTD
Hello All, so when I last posted I had been to the rheumatologist Prof X and told my bloods were not suggestive of lupus but he did not suggest want condition could be the underlying cause of my symptoms. This morning he chose not to see me, instead I saw a very nice female doctor in clinical research
Hello All, so when I last posted I had been to the rheumatologist Prof X and told my bloods were not suggestive of lupus but he did not suggest want condition could be the underlying cause of my symptoms. This morning he chose not to see me, instead I saw a very nice female doctor in clinical research
KeepingUpBeat
in
LUPUS UK
2 months ago
Carnosine as potential initial PCa treatment
Researchers have discovered that a naturally-occurring molecule could potentially be an effective first line of treatment against prostate cancer. Nottingham Trent University (NTU) scientists investigated the anti-cancer properties of carnosine, which can be produced in the body and is also found
Researchers have discovered that a naturally-occurring molecule could potentially be an effective first line of treatment against prostate cancer. Nottingham Trent University (NTU) scientists investigated the anti-cancer properties of carnosine, which can be produced in the body and is also found
Derf4223
in
Advanced Prostate Cancer
6 months ago
Gluten free and vegetarian- struggling for choices
Hi, I am diagnosed with coeliac disease and I am also vegetarian. I am struggling for choices, and feel my diet is very bland and I tend to repeat meals several times a week. Particularly eating out, or free-from sections in supermarkets are difficult. They seem to cater for both, but not the two combined
Hi, I am diagnosed with coeliac disease and I am also vegetarian. I am struggling for choices, and feel my diet is very bland and I tend to repeat meals several times a week. Particularly eating out, or free-from sections in supermarkets are difficult. They seem to cater for both, but not the two combined
lauram1978
in
Gluten Free Guerrillas
6 months ago
Study: Depression is largely prevalent, but undiagnosed in SLEResearchers in Pakistan surveyed 40 people with SLE using PHQ-9 scale
Depression is highly prevalent among people with systemic lupus erythematosus (SLE), but often goes undiagnosed, according to a single center study in Pakistan. The “treatment of depression is a vital component in the management of these patients and should be offered where appropriate,” the researchers
Depression is highly prevalent among people with systemic lupus erythematosus (SLE), but often goes undiagnosed, according to a single center study in Pakistan. The “treatment of depression is a vital component in the management of these patients and should be offered where appropriate,” the researchers
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
2 months ago
I wonder how many of us have this gene snip?It seems responsible for some autoimmune Thyroid disease and is quite rare
I have my nebula genomics results and this snip in particular seems relevant . Does anyone else have their results? Snip rs2476601 it says in snpedia.com that it is bad to have an A and very rare to have 2 AA Can cause lots of other autoimmune diseases too Best wishes Manjushri
I have my nebula genomics results and this snip in particular seems relevant . Does anyone else have their results? Snip rs2476601 it says in snpedia.com that it is bad to have an A and very rare to have 2 AA Can cause lots of other autoimmune diseases too Best wishes Manjushri
Manjushri
in
Thyroid UK
2 months ago
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