LUPUS UK
21,650 members17,165 posts

Skin & blood results

So ..... my bloods came back with my Coombes test normal but I have NO Vitamin D!! It was so low it was 'unrecordable'.

These go back to the (horrible) rheumatologist and I have no idea what he'll say, given that he dismissed me but asked for these bloods to be done.

My GP has given me medication today, but something's caused that! No idea what the rheumatologist will say. (Other than I live in Scotland!)

My skin biopsy has also come back showing Urticarial Vasculitis - the dermatologist said that's what they were looking for in relation to the Lupus stuff.

My GP said he wouldn't even attempt to interpret all the other clinical, technical jargon on my biopsy report.

My ANA was positive this time but negative 2 years ago.

My CRP and ESR were normal this time, but off the scale, sky high 2 years ago.

I'm now awaiting both consultants to get back to me (they've both been on holiday) and tell me if there's any follow-up or any diagnosis.

I'm so stressed and SO sick of always waiting weeks at a time 😢

Anyone else had this?

11 Replies
oldestnewest

Thank you 😊 It just seems to be such hard work to get a consultant to actually listen to me and ask me relevant questions 🙁

2 likes
Reply

Oh heck that's incredible to be off the charts with Vit D?! I was low too but only just in the deficient mark although I was living in Orkney then and had to get it done privately at the end of a long summer.

My GP had refused to test me saying that I was fair skinned and anyway normal levels would be different up there. Haven't a clue what my Vit D levels are now down in Scottish mainland as never been tested since to my knowledge. But within 3 weeks of starting AdCalD3 I came out of the uncharacteristic severe depression I was in and two years of severe bilateral joint pain disappeared and neither have ever returned.

So you should, in theory, notice a massive difference. 🤞🏽

My inflammation markers have always been somewhere between sky high and elevated but my ANA only turned clear positive last year. Although I'm not sure it was even checked when I first went to the doctor, just RF I think. And by the time it was checked I was either on Methotrexate or steroids or both.

I'd say that the Urticarial Vasculitis should immediately have the rheum and deem take you seriously and probably put you on some kind of immunesuppression - but you could ask about this on the Vasculitis UK HU perhaps?

Also if your rheum was foul then perhaps you could request a change in consultant? No one needs foul doctors!

Yes everything is horribly slow in rheumatology for most of us - it feels as if time has stood still sometimes!

2 likes
Reply

Thanks for replying. I'm quite taken aback that my result was unrecordable.

Apparently my health board won't allow GPS to check Vit D levels because everyone's result was coming back low - explained by living in Scotland!

So I could probably have started treatment a LONG time ago if it had been tested 🙁

1 like
Reply

There's low and there's low?! I received a phone call from the doctor at the private clinic advising me to tell my GP. I had to steel myself as he was a friend as well as my GP. He was a little defensive but agreed it was low and then admitted my calcium level was low too. I had just started Prednisolone so this was something of a shock! Looking back I wish that I'd pointed out that I had 2 autoimmune diseases so should have been tested by the NHS routinely.

Reply

I'm interested to hear the rheumatologist's response - because he told me he was sure all my bloods would come back fine. He might now regret that, or feel a bit stupid at least. His attitude was dreadful 😢

1 like
Reply

I'm afraid if he was like that then he will probably just say that all your issues were to do with vitamin D deficiency - which isn't an autoimmune disease although it could trigger or be caused by autoimmunity. Mind you he can't say that Urticarial Vasculitis isn't autoimmune and that's really your trump diagnostic card with him. With a biopsy result such as this and a positive ANA he will be hard put to be dismissive again. 🤞

1 like
Reply

My thoughts exactly. I'm quite sure the deficiency will be blamed for everything. But something's causing that!

But I also don't 'fit' a classic picture. He's already told me I don't have a connective tissue disorder after asking me no real questions and dismissing anything I DID say.

And he's already told me my skin "is a dermatology problem".

I'm going to ask to be referred to another consultant 🙁

2 likes
Reply

Definitely. I was told by a rheumy, early last year, that I didn't have a conective tissue disease. He acknowleded that I may have had RA but it was no longer active if so.

I asked what was causing my PV/ ESR and total protein to be so high then. He smiled and ordered a Bence Jones urine test for cancer. I asked what he thought the significanceof having paired bands in my spinal fluid was and what was causing the very painful and widespreadneuropathy. He said he didn't know because this wasn't his area of expertise i.e nothing rheumatic going on. I asked him if my previous rheum had been wrong to wonder if I might have Scleroderma. He said very assertively "you certainly do not have Scleroderma!".

Six months later I was rediagnosed with primary Sjögren's, with an ANA positive with pattern of Scleroderma and now attend the connective tissue disease clinic and am on the highest dose of Mycophenolate - all under a different hospital.

So hang in there - Urticarial Vasculitis is a form of Vasculitis which is defintely autoimmune.

1 like
Reply

What a nightmare! 😢

1 like
Reply

Aw man!! Asked the surgery yesterday for a printout of my bloods and was first of all asked by the practice manager why I want them!! My response was "First of all, they're MY results???!!"

Secondly was told all who need to see them can look them up "on the system". Ironically, being a nurse in the same organisation, I'm not allowed to look them up myself!

Then told a specific person would call me today - he did. Of course, it was right in the middle of a ward round so I couldn't take the call 🙁

Got the practice manager when I rang back (she's a dragon!) and she refused and made me make a GP appointment for next Friday!!

Also raised her voice at me when I questioned her so much that a colleague sitting near me heard her!

Good flaming flipping grief!!! Why is it this difficult ALL the time???

She even insulted me by assuming that "I won't understand them anyway" - when asked how does she know I wouldn't, she replied "Because if WE can't understand them, then YOU certainly won't" !!!!

How dare she assume anything!

Then got it wrong saying my GP already discussed my B12 with me on Monday - stood corrected when I said no, that was my Vit D!!

How does she know I'm not a rheumatology specialist nurse??? Her gas did peep down a bit when I said Im a charge nurse and the appointment would need to suit my shift to a degree; but I then got sarcasm and asked "So does that fit in with your shift at the hospital??".

Man alive!!

Sorry for the rant. I'm just exacerbated and SOOOO frustrated and angry right now! 😡

Reply

Got a printout of my bloods today. My GP was happy to give me a copy. According to others, my results are very low but my friend who is a doctor (and who also has Lupus) thinks one is quite high.

I'm just about done in with it all 😢

Reply

You may also like...