hide and seek lupus

[bluetit42]

i was diagnosed with lupus 5 years ago. by my local rhenmy. asked for a second opinion at st thomas's said yes i have lupus.

six moths ago rheumy told me to stop hydroxy as i don't seem to have lupus any more. a few weeks ago told i don't have lupus and never had it.

went back to st thomas's and they said i never had lupus.

can lupus go away or is it in your dna

[Galixie]

Lupus is an autoimmune disease, so it doesn't just go away. It sounds like you should request copies of your patient file so you can find out what tests were run and whether or not your doctors did diagnose lupus.

Lupus is a very serious condition. Getting a copy of your records should go a long way to clearing up the confusion. If your records state that you have lupus, you should bring that to your current doctor's attention and gently remind them that no cure for lupus has yet been found.

[Sleepybunny]

Hi,

Access to medical records (UK info)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

My personal opinion is that it is much harder to get copies of medical records from hospitals. May involve form filling and/or visit to hospital records office. It's possible copies of letters from lupus specialist you saw at St Thomas' may have been sent to your GP. Some people on this forum get a complete set of medical records costs about £50 I think.

"rheumy told me to stop hydroxy as i don't seem to have lupus"

I'm a bit confused..were you having hydroxycobalamin as a treatment for lupus or are you also being treated for PA (Pernicious Anaemia)?

If you have a diagnosis of PA then treatment is for life. See PAS (Pernicious Anaemia Society) website.

pernicious-anaemia-society....

I have read articles that mentioned the possibility of sero negative lupus (blood tests do not show lupus antibodies).

Were you ever tested for Hughes Syndrome (also known as APS Anti-phospholipid syndrome)?

nhs.uk/Conditions/Hughes-sy...

londonlupuscentre.co.uk/hug...

You mentioned in a previous thread I think, that your folate level was low.

Have you looked at the symptoms of b12 deficiency?

B12 deficiency can affect multiple systems in the body and can cause a very broad range of symptoms. It is possible to be symptomatic for B12 deficiency even if B12 levels are normal range.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

More B12 info

1) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

2) BMJ b12 article

bmj.com/content/349/bmj.g5226

3) B12 book

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

4) Lots of B12 info in pinned posts on this forum.

I am not medically trained just someone who has struggled to get a diagnosis.

[bluetit42 in reply to Sleepybunny]

my folate is 2.5 which is ridiculously low. i was put on 5mg to push it up but stopped it because i did not want it to interfere with my b12 levels. i am awaiting the active b12 blood results any day now should be interesting

[bluetit42 in reply to Sleepybunny]

this is my blood results from st thomas (ANA positive,titre>1:320, lymphopeni, raised ESR,normal CRP what does that mean to anyone lupus or not

[ce6771]

I have had the same experience as you. I was diagnosed with PA in 2010 and Lupus in 2013. Once I started methyl cobalamin injections (I have a lot of neuro symptoms with the PA) my C3 complement levels rose and I started feeling better. My Rheumy did a more specific Lupus antibody test and said that she's not sure if I even have Lupus even though I met all of the criteria for diagnosis back in 2013. Seems to me maybe a lot of people diagnosed with Lupus could have a problem with B12 deficiency and might be misdiagnosed. My C3 complement levels rose when I had more frequent injections and they fell when I had fewer injections. There seems to be a direct correlation.

[bluetit42 in reply to ce6771]

now thats an issue because i was diagnosed with lupus nearly 6 years ago. if i have had low b12 (365) and folate (2.5) all this time i am in serous trouble