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Gaucher disease type 3 (GD3)
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How to monitor PCa after you stop ADT?
I've been on Zoladex implants for coming up to 4 years in February. I plan to stop ADT next time when it's due, as my PSA is always "undetectable" and it's been 4 years of physical and mental torment for me (the side effects). I think that enough is enough now. Does anyone have advice on the best ways
I've been on Zoladex implants for coming up to 4 years in February. I plan to stop ADT next time when it's due, as my PSA is always "undetectable" and it's been 4 years of physical and mental torment for me (the side effects). I think that enough is enough now. Does anyone have advice on the best ways
BluesmanNick
in
Advanced Prostate Cancer
6 months ago
B12 deficiency and night sweats query
Hi - I don't have a diagnosis but I hope you don't mind if I pick your expert brains 🙏 I (Female, 45) have fairly regular blood tests due to medication I take for inflammatory arthritis. My MCV has been a little bit high for years (up to 102). Early on doctors would question it and because of a family
Hi - I don't have a diagnosis but I hope you don't mind if I pick your expert brains 🙏 I (Female, 45) have fairly regular blood tests due to medication I take for inflammatory arthritis. My MCV has been a little bit high for years (up to 102). Early on doctors would question it and because of a family
rmros
in
Pernicious Anaemia Society
25 days ago
IVF - After a Miscarriage
Hi All I’ve had SLE since 2014, and I had a miscarriage in my first trimester in Jan 24. Since, I’ve been referred for IVF and in parallel I am trying to get a referral to a Lupus In Pregnancy clinic so both the fertility and lupus clinic that specialises in pregnancy can help build a plan for me.
Hi All I’ve had SLE since 2014, and I had a miscarriage in my first trimester in Jan 24. Since, I’ve been referred for IVF and in parallel I am trying to get a referral to a Lupus In Pregnancy clinic so both the fertility and lupus clinic that specialises in pregnancy can help build a plan for me.
Heal-
in
LUPUS UK
25 days ago
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autoimmune left or right bias?
Adult Onset Stills Disease is categorised as autoimmune /auto inflammatory. Over the years I’ve developed several other AI conditions such as Interstitial Cystitis and Lichen Sclerous. I have fungal nail disease on my left foot, gout in left toe, finger warts on my left hand, over growth of soft gum
Adult Onset Stills Disease is categorised as autoimmune /auto inflammatory. Over the years I’ve developed several other AI conditions such as Interstitial Cystitis and Lichen Sclerous. I have fungal nail disease on my left foot, gout in left toe, finger warts on my left hand, over growth of soft gum
Stills
in
PMRGCAuk
25 days ago
My big discovery. Sjogren’s UCTD Fibro…
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
IsleofWight1
in
LUPUS UK
26 days ago
MCTD diagnosis, finally!
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
MauveMouse
in
Thyroid UK
26 days ago
JUNE NEWSLETTER
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
PAScomms
in
Pernicious Anaemia Society
26 days ago
Intermittent fasting
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Swizzly
in
PMRGCAuk
26 days ago
Can you live longer than 20 years with cirrhosis
18 years ago I was very ill with Hepatises/cirrhosis. Since then I have done ok. I have portal hypertension but no varices. Occasion fluid retention in my legs but no ascites. Enlarged spleen 17mm. I have been asking the doctors if I can live past 20 years with this disease. The responsive have been
18 years ago I was very ill with Hepatises/cirrhosis. Since then I have done ok. I have portal hypertension but no varices. Occasion fluid retention in my legs but no ascites. Enlarged spleen 17mm. I have been asking the doctors if I can live past 20 years with this disease. The responsive have been
1of5
in
British Liver Trust
6 months ago
My journey thus far
I am currently at the point of deciding on treatment for my high risk prostate cancer. Here is where things stand thus far:
October 2023:
PSA of 22 discovered at routine physical
November 2023:
PSA score of 25.6 upon retest by urologist
December 2023:
TRUS Biopsy. Cancer in
I am currently at the point of deciding on treatment for my high risk prostate cancer. Here is where things stand thus far:
October 2023:
PSA of 22 discovered at routine physical
November 2023:
PSA score of 25.6 upon retest by urologist
December 2023:
TRUS Biopsy. Cancer in
CavScout
in
Advanced Prostate Cancer
6 months ago
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome?
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Shewulf
Administrator
in
LDN Research Trust
28 days ago
lupus or fibromyalgia
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
Pricey110
in
Fibromyalgia Action UK
28 days ago
fibromyalgia or lupus
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
Pricey110
in
LUPUS UK
28 days ago
Does fear play a role with pernicious anemia?
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
25092
in
Pernicious Anaemia Society
28 days ago
Spider Nevis, does anyone else have these?
Short story, hospitalised over a year ago with jaundice and ascites due to alcoholism, considered de compensated cirrhosis, original fibro scan read 22.2kpa, now it’s 9 and I’m considered to have fibrosis and not cirrhosis although my liver is obviously scarred and my doctor is quite honest when he said
Short story, hospitalised over a year ago with jaundice and ascites due to alcoholism, considered de compensated cirrhosis, original fibro scan read 22.2kpa, now it’s 9 and I’m considered to have fibrosis and not cirrhosis although my liver is obviously scarred and my doctor is quite honest when he said
Grassroots112
in
British Liver Trust
6 months ago
Blood tests whilst pregnant
This is a question after reading posts+research. I understand there is a Def link between underactive thyroid/Hashimotos kicking off whilst pregnant+a link between Hashimotos+pre-eclampsia. Speaking from experience many years ago, for me this seems clear. So, just as mother's are checked re diabetes
This is a question after reading posts+research. I understand there is a Def link between underactive thyroid/Hashimotos kicking off whilst pregnant+a link between Hashimotos+pre-eclampsia. Speaking from experience many years ago, for me this seems clear. So, just as mother's are checked re diabetes
Lottyplum
in
Thyroid UK
30 days ago
Medical lecture and Q&A - Hosted by Dr. Arvind Kaul (with guest speakers) - 15th June 9.30am
Consultant Rheumatologist Dr Arvind Kaul, the Head of Rheumatology & Lupus Patient Care at St. George's Hospital will be hosting the next South London Lupus Group Medical Patient-Focused Lecture. Our agenda for the morning as follows: 1. 09.30: Registration and Welcome 2. 10.00: Melanie Sloan:
Consultant Rheumatologist Dr Arvind Kaul, the Head of Rheumatology & Lupus Patient Care at St. George's Hospital will be hosting the next South London Lupus Group Medical Patient-Focused Lecture. Our agenda for the morning as follows: 1. 09.30: Registration and Welcome 2. 10.00: Melanie Sloan:
michaellasmith
Administrator
in
LUPUS UK
1 month ago
What is folic acid used for?
For other reasons, nothing to do with Pernicious Anaemia, I was checking the Patient Information Leaflet for a UK folic acid product. And I noticed this bit: [i]Ennogen Pharma Limited[/i] [i]
Folic Acid Tablets 5mg
[/i] [i]1. WHAT FOLIC ACID TABLETS ARE AND[/i] [i]WHAT THEY ARE USED FOR[/i]
For other reasons, nothing to do with Pernicious Anaemia, I was checking the Patient Information Leaflet for a UK folic acid product. And I noticed this bit: [i]Ennogen Pharma Limited[/i] [i]
Folic Acid Tablets 5mg
[/i] [i]1. WHAT FOLIC ACID TABLETS ARE AND[/i] [i]WHAT THEY ARE USED FOR[/i]
helvella
in
Pernicious Anaemia Society
1 month ago
Autoimmune disease?
hello, Looking for advice/reassurance just need somewhere to unload really. It all started off with upper right sided abdominal pain which took me to the doctors back in February. Dull ache burning sensation not unbearable but I’m aware of the pain. Ultrasound scan on upper abdo normal. Bloods showed
hello, Looking for advice/reassurance just need somewhere to unload really. It all started off with upper right sided abdominal pain which took me to the doctors back in February. Dull ache burning sensation not unbearable but I’m aware of the pain. Ultrasound scan on upper abdo normal. Bloods showed
Farfield
in
British Liver Trust
1 month ago
Anyone know about Dr's or consultants prescribing metformin for endometriosis?
I recently got access to ALL my medical records from the consultants I had been referred to over the years and saw that in the past I had been prescribed metformin, altavita and amitryptaline at the same time by an endocrinologist. I presumed at the time it was for my underactive Thyroid and wasn't on
I recently got access to ALL my medical records from the consultants I had been referred to over the years and saw that in the past I had been prescribed metformin, altavita and amitryptaline at the same time by an endocrinologist. I presumed at the time it was for my underactive Thyroid and wasn't on
Escapologygirl
in
Endometriosis UK
1 month ago
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