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Living with lupus in 2024 survey - closing soon!
Lupus Europe is conducting a survey to gather insights into the experiences of individuals living with lupus across Europe. The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages. To complete the survey, please click the following link
Lupus Europe is conducting a survey to gather insights into the experiences of individuals living with lupus across Europe. The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages. To complete the survey, please click the following link
nakita_cambow
Moderator
in
LUPUS UK
4 months ago
Lupus Tumidus
Hi All - After months of burning and itching skin, intermittent exhaustion, irritability, on and off leg swelling and joint pain, I have been diagnosed with Lupus Tumidus. Rheumatologist has said it is not SLE and will likely never turn into SLE. (I am not convinced but one battle at a time). Does
Hi All - After months of burning and itching skin, intermittent exhaustion, irritability, on and off leg swelling and joint pain, I have been diagnosed with Lupus Tumidus. Rheumatologist has said it is not SLE and will likely never turn into SLE. (I am not convinced but one battle at a time). Does
TumidusG
in
LUPUS UK
4 months ago
Feeling lonely and fobbed off! What are these symptoms??
Hello, this is my first time posting so please bear with me.I am a 40 year old female. I was diagnosed with discoid lupus in 2005. Then a few years later, lupus panniculitis which is quite rare (fatty lumps under the skin which leave atrophies. (Mine are on my face, breasts, and arms). For the last
Hello, this is my first time posting so please bear with me.I am a 40 year old female. I was diagnosed with discoid lupus in 2005. Then a few years later, lupus panniculitis which is quite rare (fatty lumps under the skin which leave atrophies. (Mine are on my face, breasts, and arms). For the last
Starshine83
in
LUPUS UK
4 months ago
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Social Isolation
Unfortunately, I don't have many friends for family to reach out to. MSAA's chat through HealthUnlocked here has provided me with much needed social connection. The MSAA help line suggested that I contact "MSFriends" so I just signed up for "MSFriends" peer support program through the National Multiple
Unfortunately, I don't have many friends for family to reach out to. MSAA's chat through HealthUnlocked here has provided me with much needed social connection. The MSAA help line suggested that I contact "MSFriends" so I just signed up for "MSFriends" peer support program through the National Multiple
donna0329
in
My MSAA Community
4 months ago
Do you have lupus or another autoimmune condition?
There is still time to complete the survey conducted by RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) on what patients think about the quality of their care, guidance and treatment for their Rare Autoimmune Rheumatic Disease (RAIRD). This is to provide valuable insights into the way services are
There is still time to complete the survey conducted by RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) on what patients think about the quality of their care, guidance and treatment for their Rare Autoimmune Rheumatic Disease (RAIRD). This is to provide valuable insights into the way services are
nakita_cambow
Moderator
in
LUPUS UK
4 months ago
levothyroxine
Diagnosed eight weeks ago underactive thyroid even though I had no symptoms. 25mg given and 12 days later reduced to 12.5 as I was so ill. 4 weeks later I was bedridden, severe headaches and unable to urinate so took myself off them as Surgery would not respond. Informed Surgery what I had done they
Diagnosed eight weeks ago underactive thyroid even though I had no symptoms. 25mg given and 12 days later reduced to 12.5 as I was so ill. 4 weeks later I was bedridden, severe headaches and unable to urinate so took myself off them as Surgery would not respond. Informed Surgery what I had done they
Sunny-time
in
Thyroid UK
4 months ago
Antibody blood test
Hello I hope everyone is well. I was diagnosed with hashimotos about 9 weeks ago and have been on levothyroxine 50mg, blood test due at 12 weeks. Have also been taking vit d and ferroglobin. I have awful upper back, neck and foot pain. Currently under physio. Doctor did blood tests for rheumatoid arthritis
Hello I hope everyone is well. I was diagnosed with hashimotos about 9 weeks ago and have been on levothyroxine 50mg, blood test due at 12 weeks. Have also been taking vit d and ferroglobin. I have awful upper back, neck and foot pain. Currently under physio. Doctor did blood tests for rheumatoid arthritis
Nattycake
in
Thyroid UK
4 months ago
CD20 Therapies (Ocrevus, Kesimpta, etc.) and potentially serious dental problems
This was an interesting post on the MS-blog. You have to get past the Dustin Hoffman in Marathon Man reference (which was a memorable scene!) to get down to the nitty gritty of why dental hygiene and regular checkups are so critical when when you're on certain MS therapies. https://multiple-sclerosis-research.org
This was an interesting post on the MS-blog. You have to get past the Dustin Hoffman in Marathon Man reference (which was a memorable scene!) to get down to the nitty gritty of why dental hygiene and regular checkups are so critical when when you're on certain MS therapies. https://multiple-sclerosis-research.org
CatsandCars
in
My MSAA Community
4 months ago
Difference in levels-stress?
I've been on leventhyroxine for years for underactive thyroid. Had yearly check muddle of Feb. TSH 2.09. Had full bloods for something else (WRS) and levels are 0.36 by middle if April. I'm wondering if stress can cause TSH to go up or down? Dr. Says this is in normal range for lab- but normal
I've been on leventhyroxine for years for underactive thyroid. Had yearly check muddle of Feb. TSH 2.09. Had full bloods for something else (WRS) and levels are 0.36 by middle if April. I'm wondering if stress can cause TSH to go up or down? Dr. Says this is in normal range for lab- but normal
Itsallaboutcheese
in
Thyroid UK
4 months ago
Anyone with Graves disease have high gastric parietal cell antibodies?
Hi. I just had a lab done and found out I am positive for gastric parietal cell antibodies 26 where over 25 is considered positive. I read that it can be from pernicious anemia (my levels were low but normal now), autoimmune gastritis (i did an endoscopy and have mild gastritis) or from thyroid disease
Hi. I just had a lab done and found out I am positive for gastric parietal cell antibodies 26 where over 25 is considered positive. I read that it can be from pernicious anemia (my levels were low but normal now), autoimmune gastritis (i did an endoscopy and have mild gastritis) or from thyroid disease
Beefull8
in
Thyroid UK
3 days ago
rheumatoid arthritis
Has anyone had an operation on elbow from rheumatoid arthritis? Did it help?
Has anyone had an operation on elbow from rheumatoid arthritis? Did it help?
65_women
in
NRAS
4 months ago
Thyroid or menopause - which to sort first?
I've just checked the app, and the last of my blood tests are back. I definitely have started perimenopause and as per my last post I have high TPOab, high TSH (7.5 with high ref being 4.26), and lowish T4 (14.2 of a 12—22 range). I have symptoms that overlap the two conditions, but also symptoms that
I've just checked the app, and the last of my blood tests are back. I definitely have started perimenopause and as per my last post I have high TPOab, high TSH (7.5 with high ref being 4.26), and lowish T4 (14.2 of a 12—22 range). I have symptoms that overlap the two conditions, but also symptoms that
Heappestre
in
Thyroid UK
4 months ago
PA and Sjogren’s
I posted a few days ago about dry mouth and eyes, but since then my early sjogrens bloodwork has come back positive. I am terrified! Is there anyone else who has AIG/PA and also sjogrens? I feel desperately in need of some hope and guidance…in particular I’m wondering if injections have helped with SS
I posted a few days ago about dry mouth and eyes, but since then my early sjogrens bloodwork has come back positive. I am terrified! Is there anyone else who has AIG/PA and also sjogrens? I feel desperately in need of some hope and guidance…in particular I’m wondering if injections have helped with SS
Lhood08
in
Pernicious Anaemia Society
4 months ago
Updated Lupus and the Skin booklet available now
We are proud to launch an updated version of our Lupus and the Skin information booklet. It is now available online and in hard copy from National Office. You can find more information about how the booklet was updated here: https://lupusuk.org.uk/updated-lupus-and-the-skin-booklet-available-now/ or
We are proud to launch an updated version of our Lupus and the Skin information booklet. It is now available online and in hard copy from National Office. You can find more information about how the booklet was updated here: https://lupusuk.org.uk/updated-lupus-and-the-skin-booklet-available-now/ or
Debbie_kinsey
Administrator
in
LUPUS UK
4 months ago
TIA in March
Hi, l recently had a mild TIA while in Cyprus where l live the treatment l received was excellent but the Neuroligist has prescribed Atvorstatin which l have found out shouldn’t be taken if you have an underactive Thyroid he dismissed this. Should l see my GP whilst l am in UK
Hi, l recently had a mild TIA while in Cyprus where l live the treatment l received was excellent but the Neuroligist has prescribed Atvorstatin which l have found out shouldn’t be taken if you have an underactive Thyroid he dismissed this. Should l see my GP whilst l am in UK
Tillybuds
in
Thyroid UK
4 months ago
Tuesday's Tips
[i]
Two of the common conditions associated with PBC are thyroid conditions and with those that cause anemia. This is because they both have shared genetic factors that affect our immune response.
[/i] [i]
An underactive thyroid is caused by an autoimmune response to the gland itself.
[
[i]
Two of the common conditions associated with PBC are thyroid conditions and with those that cause anemia. This is because they both have shared genetic factors that affect our immune response.
[/i] [i]
An underactive thyroid is caused by an autoimmune response to the gland itself.
[
DonnaBoll
Administrator
in
PBC Foundation
26 days ago
Generic TCZ---is it available in the UK?
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
Grammy80
in
PMRGCAuk
4 months ago
Thyroid ultrasound
HiHad pain in side of neck and behind ears. Gp sent me for thyroid ultrasound as have underactive thyroid and hashimotos. Ultrasound was 2 minutes long and even the assistant tech said that was quick. Has anybody else had a thyroid scan that quick? Felt like he started scan then just stopped. Wierd
HiHad pain in side of neck and behind ears. Gp sent me for thyroid ultrasound as have underactive thyroid and hashimotos. Ultrasound was 2 minutes long and even the assistant tech said that was quick. Has anybody else had a thyroid scan that quick? Felt like he started scan then just stopped. Wierd
Jenni55
in
Thyroid UK
4 months ago
Notes for upcoming GP appointment
Apologies as this is a long read 🙃 I've got a GP appointment booked for 9th May, with a doctor I've not seen before and who is relatively new to the practice. I'm wanting to ask for a Rheumatology referral and have written the below out as a crib sheet for me to take in. I'd appreciate any thoughts
Apologies as this is a long read 🙃 I've got a GP appointment booked for 9th May, with a doctor I've not seen before and who is relatively new to the practice. I'm wanting to ask for a Rheumatology referral and have written the below out as a crib sheet for me to take in. I'd appreciate any thoughts
Wispymisty
in
LUPUS UK
4 months ago
Another cause of Pernicious Anaemia?
We know that certain gastric operations cause Pernicious Anaemia and therefore lifelong b12 injections are required . But what I’ve never seen mentioned is the possibility of radiotherapy cancer treatment in the region of the stomach that contains the parietal cells , causing Pernicious Anaemia . Surely
We know that certain gastric operations cause Pernicious Anaemia and therefore lifelong b12 injections are required . But what I’ve never seen mentioned is the possibility of radiotherapy cancer treatment in the region of the stomach that contains the parietal cells , causing Pernicious Anaemia . Surely
wedgewood
in
Pernicious Anaemia Society
4 months ago
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