Diagnosed with Connective Tissue Disease possibly... - LUPUS UK


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Diagnosed with Connective Tissue Disease possibly Lupus

angelharley profile image

OK.....I'm a female age 47 and I have Hashimoto's (autoimmune thyroditis) I've had 2 spinal ops and suffer at times with nerve pain. I've been very unwell for the past 7 mths, at first Doc said I had a tropical virus after coming back from Marrakech but T Lymphocytes raised since then. Back in April I tested positive ANA 1:80 with nucleolar pattern, gastric parietal cells ABS and TPO ABS.I have permanent rosie cheeks, redness down my nose and red forefead. When my lymph glands are up on my neck, redness and bruised. Ache all over, pain in ribs and hips, even fingers and wrists hurt. Also headache, hair falls out daily but is ok cos I have very thick curly hair, so has thinned out. I know when things are bad cos my hair has no oil in it, I cant put a brush through it and its very dry and matted. Headaches come frequently, lost weight and little appetite.

I saw a specialist last week, paid to go private, also paid out for private blood tests as I was getting desperate and I need to get back to work!! He diagnosed me with a CTD and said it possibly could be Lupus and I'm waiting to have further blood tests. I see him again the beginning of November.

Oh yea and I have a low fever, my skin feels hot, especially early evening and throughout the night.

Before this started I was always constipated, not no more, go daily!! Very down especially during a bad episode and irritable and moody, def not myself. Last episode, had loads of ulcers in mouth, took pictures and also showed Dr.

Any advise or opinions wud be appreciated.


13 Replies
LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Hi angelharley, I have a link about mouth ulcers which could be of use to you; healthunlocked.com/lupusuk/... We can also send out an information pack to you regarding Lupus, if you would like one just email me at hayley@lupus.org.uk and i will arrange to send one out to you. :)

LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Or if you'd prefer you can download the information pack from this link; lupusuk.org.uk/want-to-know.... And excuse my email mistake! it should read hayley@lupusuk.org.uk :)

Thanks Hayley, I will have a read. Going for my blood tests tomorrow, consultant has requested rheumatoid Factor, ANA, ANCA, ESR and Gastric Parietal cells antibodies. Do these seem adequate?

What is ANCA do u know?

LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Unfortunately we are not medically trained here at LUPUS UK angleharley, so i cant comment on the blood panels that have been requested. After looking ANCA is a type of antibody that they often test for in autoimmune conditions, most commonly vasculitis. More info however on lupus blood tests are available in the information pack that i mentioned earlier.

Thanks Hayley. I looked up Vasculitis, do many people on here suffer with this?

Hi Natalie,

I can't really help you as I don't have a diagnosis yet. I was struck though by how many symptoms I share with you. I have TPO and GP antibodies. Spine and knee full of arthritis.So many aches and pains. My ANA has been 1:80 and at last test was 1:400. Am going to rheumie early next week so will be interesting to see what they say. Will post then. Good luck in the meantime.

Hi Jenny,

Thanks for your message and I'm sorry you too are waiting for a diagnosis. I find it really frustrating, all I want is some sort of treatment to stop these dam episodes of feeling so unwell. Have u been told it could be Lupus? Every day something new pops up, yesterday behind my ear was red rore and today stomach pains. Fingers were numb and cold this morning, they sometimes go white. My Daughter suffers with Raynards badly but mines not as bad,

Hope u get some joy next week, when was your last ANA test. I'm worried that mines gonna come back negative and as i'm not too bad at the moment, was really poorly a couple of weeks ago. Don't want to drag this thing on any longer without some sort of treatment. We all know our own bodies and when there not working properly but trying to explain that to Doctors is a task and a half. Wish they would listen.

Good Luck for next week jenny.

The rheumie has put me into his lupus specific clinic. My ANA was taken about three months ago it is always positive but can go up and down.I have been to several specialists for the many weird and wonderful symptoms I have had over the past few years. They all go that is unusual but no one has put it all together. At the same time I am not getting my hopes up because of this. Just want an answer!.

Exactly What I'm looking for Jenny!!

Are u taking medication for your Hashi's, if so what and how much! I was on !00mcg of Levo, tried T3 for a month but couldn't tolerate as headache become unbareable. I'm now ordering Nature Throid online and feel that is working better for me but will know more if and when I get some treatment for the CTD.

What annoys me is that everyone says "U don't look I'll, R U sure it's not all in ur head" They say think positively and it will go away. I know when I'm having a flare episode as my mood changes, I'm so drained of it, low irritable and moody and then when it lifts, I start to socilise, laugh and be me again, still exhausted thou.

R u on Thyroid UK site too?

Hopefully we will both get treatment shortly

Jenny1 profile image
Jenny1 in reply to angelharley

I am on 50mcg eltroxin and starting on that was like coming out of a coma for me. I found it helped with my muscle problems but my joints then flared up. I have aching hands and feet since then. I have also had seven sinus infections and constantly have thrush. I would love to be able to step out of this body sometimes just to get a rest. Have not been anywhere as exotic as Marrakech but I found I got badly bitten with swelling by the flies this summer. Never happened before. Have to sit down before my appointment and write out my symptoms over the last few years- that's going to take a while!!.

angelharley profile image
angelharley in reply to Jenny1

Drives me mad, trying to remember all the symptoms at these appointments lol memory is poor at the best of times. I've wrote at my symptoms but didn't at my last appointment but then emailed him with a list that I found from a couple of months ago, should give him a good enough picture. I showed him lots of pictures I'd taken and my malar rash was up when I saw him. I'm worrying thou that my bloods will show normal that i had today cos I have been feeling ok for nearly 2 weeks, is probably the best I've been in 7 mths. Sods Law lol

I wonder if it is just coincidental that you mention this seemed to become an issue after being in Marrakech..

My dodgy reasoning is that lupus is more common in certain ethnic groups and treatment is often with anti malarials. I remember getting bitten by mosquitos really badly during a trip I took to Morocco many years back.

I wonder if there may be a connection.

Sorry you are feeling so rough at the moment. Once they start you on some sort of treatment you should find some relief.

The Docs think I picked up a tropical Virus and yes I was bitten too by Mosquito's and react badly. During the summer, I've also been bitten by horse flies and I swell up, causing a huge area of hard redness for about 5 days, the area then looks very bruised while its trying to heal, I still have the scars from them.

Off for more blood tests today!!!

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