Veins and Lupus?: Ok, im suppose to have mild lupus... - LUPUS UK

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Veins and Lupus?

dgleds profile image
20 Replies

Ok, im suppose to have mild lupus..I also am hypothyroid.....Rhumetologist last visit in january said my lupus isnt very active (Dont come back unless...)Im not on meds for my lupus now...Im only on synthroid for my thyroid.

*SO, in this last week i have noticed the veins in my hands have super popped out, and even up my arms a bit...Its mostly my right hand on the top ...Im not hot, and im well hydrated...I feel a slight pinching feeling, but not bad....it just looks like Im the incredible hulk with popped out veins...I have also noticed one of my feet burns, but mostly at night...Ive made an appointment with my GP, but its like a week away...

The only thing different in my life is we lost a family member in a very sad way last month, and my best friend is fighting cancer....So stress, yes!

With my thyroid last test i think my T3 was very low, but not out of range yet...

BUT, can you get a vein thing with lupus?

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dgleds
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20 Replies
dgleds profile image
dgleds

oh and Im almost 60

I don't know... but my veins on my hands are almost always popped out and have been for years. I'm now 63. I have the burning feet thing more off than on lately... Cymbalta helped that a lot at first, one of the reasons I don't want to go off it. I'm not on Lupus related meds at the moment either, but feel I probably should be. When I get back to my reg Rheumatologist it might happen. Good luck!

dgleds profile image
dgleds in reply to

Thanks Mezzoishere :)

linda96 profile image
linda96

Hi, dgleds, do you have any recent blood test results with ranges to post on here? The hospital have always, after I phone and request them, sent me a copy. That includes any results for tests for lupus. If they ask why you want them, say it's for your records. I go to another hospital and have bloods done there too so keeping records of blood tests done and dates is essential.

dgleds profile image
dgleds in reply tolinda96

The rhumetologist never did any tests last time and just said my lupus isnt very active, and i dont need to come back unless my gp has concerns....For my thyroid im hypothyroid but im slightly over medicated, which has been lowered and is coming up to normal TSH, but my T3 is almost out of range at 3.7...(if it were 3.5 it would be out of range)...t4 is normal range..Thanks Linda96 :)

Hi Dgleds - sorry to hear about recent loss and best friend fighting cancer - difficult times. I have primary Sjogrens and am hypothyroid. I'm also not on any treatment while they check for related cancer and brain involvement. When I flare up the veins in my hand stand up like they have been pumped. I always assumed this was RA related but now it seems I don't have RA so thinking maybe a Sjogrens thing. My inflammation levels are often very high and this doesn't always relate to joint pain - sometimes there seems no rhyme or reason and my total protein is often elevated. I now have learned that these are common findings with Sjogrens because of the thicker blood (a sort of dehydration). I'm guessing that this might be why my veins become so elevated when in Sjogrens flare?

Also my new endo has removed the T3 from the menu and replaced it with a higher dose of T4. I've noticed that I've been sleeping better, less heart palpitations and my hands are not quite as excruciating and stiff as they had been previously. I have a lot more energy too.

I think I assumed that this T3 which so many people on the thyroid UK promote, would be miraculous for me, but it seems not. The endo says nearly all my symptoms relate to my Sjogrens but he did also say the two diseases are bound up in each other as well. I take this to mean - you need to keep both well controlled to feel well. Might you have Sjogren's as part of your Lupus?

dgleds profile image
dgleds in reply to

Im wondering that too....I really think my Rhumetologist was waiting for symptoms to appear in that 2 year span he saw me, but things subsided, so he said "Your lupus isnt very active", if you need to come back go see your gp type thing...Yes, thyroid does seem to be mixed in with stuff....I was overmedicated for quite some time, but they lowered that med, and its making readings normal except my T3 is almost out of range...Thanks Twitchytoes ;)

in reply todgleds

It's taken me years to be rediagnosed from RA to Sjogren's so hang in there. It's very close to Lupus but there's an increased risk of small fibre neuropathy and lymphoma with Sjogren's. Two rheumies didn't even think of it for me because my eyes and mouth not significantly dry but ANA and lip biopsy came up trumps. X

dgleds profile image
dgleds in reply to

The only part of the eye area ever gets super dry, is the outer rim where we use to put eye liner (the lower rim)by my tear duct and along...I know ,odd place to feel dry...but it feels awful...I had that goofy ANA 1:320 fine speckle and homogeneous few years back...They seem so reluctant to retest or do tests....Cutbacks in Canada for medical i guess...Im going to re read stuff for Sjogrens...Also few years back, my teeth were messing up,...and Ive always had really nice teeth! That could be from Sjogrens too, if i have that...Thanks Twitchytoes :)

in reply todgleds

Sometimes SJS doesn't show up in eyes and mouth until long after its romped through nerve fibres and other organs. I posted sweet little film:

tulipanidisetanera.rai.it/d...

dgleds profile image
dgleds in reply to

okay, i will have a look ;)

Ok Twitchytoes, no more dry eyes after that little film....sad and sweet....Wow! But so very true how things go down...Thanks :)

in reply todgleds

My ana was same number as yours but more unusually a nucleolar pattern.

dgleds profile image
dgleds in reply to

i wish i could get them to re do mine...out of curiousity!!!! They do that test differently now too...

in reply todgleds

Mine was previously negative but I was on steroids and previously methotrexate plus Hydroxy for two and half years when it was done. If I hadn't relocated for a second time in a year they would have never retaken all my antibodies in new hospital with a third rheumy. This led to lip biopsy which clinched it. X

dgleds profile image
dgleds in reply to

Ya I was moved around a bit, but becasue GP kept leaving and going back to their home countries...I hate when they look at a computer when they are seeing you for a GP visit...Half the time they dont even know what they are seeing you for...I use to love my old family GP and his file of papers...(its not better these days).

in reply todgleds

I agree. X

mariearmstrong profile image
mariearmstrong

you can see every single vein in my body...face included. very lovely. wear lots of makeup and never undress in front of anyone lol

dgleds profile image
dgleds in reply tomariearmstrong

I know, its a bummer....thanks Mariearmstrong :)

Bleachbabe profile image
Bleachbabe

Hi, I'm testing negative for lupus right now, but have connective tissue disease. I have clear prominent veins on palms and they look worse when the pain gets worse. Hands also get mottled red and white patches for no reason and tips of fingers are really painful when I press things .. light switch etc. Rheumy not interested once I said they don't go white when cold. I wear arthritis gloves which are great to help stop the pain from synovitis and of course I can't see the colours or veins when I wear them. I just wish I could get them in nicer colours lol. Hope you get an answer soon xx

dgleds profile image
dgleds in reply toBleachbabe

Thank you Bleachbabe...

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