[jammy]

Hi all

Just wondering if anyone could help. For some reason I have been referred to the louise cootes unit at Tommy's.

I'm just wondering if anyone who's been there can tell me what they do when you go for your appointment? Is it just a chat or do they do tests?

I've had a lot of bad health for over a year which kicked off after a 2 month period of stress. My symptoms are a bit vague (fatigue, intermittent hair loss, dry eyes, constipation, can't walk for more than 20 mins without losing my energy completely/getting very weak, postural hypotension).

Personally, I don't think I have lupus as I don't think my symptoms really match. Also given that my symptoms are so vague, how can they possibly know whether they are lupus or not? My ESR (done two times is always negative) and the ANA tests have only been weakly positive. Wouldn't that indicate that I don't have lupus?

I have two autoimmune diseases already (thyroid and diabetes T1) and in my family we have thyroid, alopecia universalis, vitiligo, diabetes T1 as far as I know.

thanks
jammy dodger

 

[KarolH]

Hi Jammy,

Welcome to a great place. I can not tell you about Louise Coots as I am not aware of it yet someone with knowledge will be along to give you a opinion.

I hope to get to know you better and just wanted to jump in and shout out a warm welcome your way.

Glad you joined the forum. You will love it here and the support is wonderful.

 

[jammy]

Thanks Karol

It certainly seems like a great website with lots of nice people.

I just remembered another symptom I forgot to mention. A few months ago, I had severe joint pain and stiffness in my fingers and toes but it only lasted for 2 months. Now my joints are fine. I'm only in my 30s so I thought that was a bit odd.

Jammy

 

[cemc]

The Louise Coote unit is the name of the specialist lupus unit at St Tommies. It is also a tertiary NHS referral centre so they take referrals from all over the country. You may have been referred there just because it was one of your local hospitals and they suspected lupus, or if you are out of the area normally, then you may have been referred there because yours isn't a clearcut easy to diagnose case and they wanted expert lupus specialists to look you over. Whatever way, you will be getting a really good lupus assessment. I've not been there myself, so can't tell you exactly what an assessment includes. Maybe someone else can answer that.

 

[cath]

Hi Jammy,

I'm sorry you have been unwell lately.

The Louise Coote Unit is a really top notch lupus clinic, run by probably the best rheumatologists in the UK. They are also familliar with other autoimmune diseases and are probably the best people to see about what you have.

From what you write about your symptoms, it is possible you have mild lupus, or sjogrens. It could also be that these symptoms are from the thyroid. Still, if you are wanting an answer, this appointment is a really good place to start:wink2:

let us know how you are getting on.

X C X

 

[Lupo30]

Hi Jammy!

Welcome. I am also a type 1 diabetic. I have coeliac disease, diabetes, and sle/sjogren's overlap. Have they tested you for coeliac disease, as I used to suffer from constipation when my coeliac disease was undiagnosed, I'm sure they have but just thought I would check. I think it's wonderful that you will be going to one of the best lupus centres and would be very interested to know how you get on.

Welcome again, Love

Kat xx

 

[LolaLola]

Jammy, myself and my Daughter are treated by Dr. D'Cruz at the Louise Coote Unit, St. Thomas'. The first thing that happens is that a Nurse will call you round to be weighed, Blood pressure check and Urine test. Then you will wait for the Dr. If you are placed under the care of Dr. D'C(who is marvellous) he may see you himself or it may be one of his Team. If it is one of the Team they will report to Dr. D'Cruz and probably he will come into the Examination Room to see you.

A full medical history is taken, so do write yourelf some notes in advance. You will probably need to strip down to your undies. If you require a blanket for modesty's sake please say so. (My Daughter does as she is young and shy)
Your joints and skin will be looked at, reflexes tested, visual fields checked, all in all a very thorough examination. You will also probably have the Shirmers test, which means little strips of paper placed under your eyelids to measure tear secretion. This is a very valuable test in diagnosis terms. It is not as unpleasant as it sounds. You will also be sent for blood tests, which are in the main hospital building. Re. The Shirmers test you would probably do better not to wear mascara that day. Also if you have contact lenses maybe take glasses along to wear afterwards rather than struggle putting lenses back in!

I don't know where you are travelling from but if it is a long way you may prefer to travel the day before and stay in the Patient Hotel , same building as Louise Coote-very handy. This would be free for you,but you would probably have to pay if someone stays with you. (Just over £30 , may be a little more now-but still cheap, clean and convenient)
I hope this helps I am sure there is a lot I have forgotten. It is level access to the Unit and to Blood Tests. Blood Tests are a little bit of a walk though.

Waterloo is the nearest main station, the nearest Underground is Westminster.
X Lola