Anyone doing the Genetic PCOS study in London

jujuQ · 04-08-2003, 10:21 AM

I recieved a letter yesterday from my Endo (Dr Conway at Middlesex Hospital UCL) asking if I wanted to take part in a study researching the hereditry factors of PCOS. The letter was dated last week but the info enclosed was dated August 2001 so I figured that if this research is ongoing, some of you might have taken part in this study already.

I haven't got the letter in front of me at the moment (doh!) but from what I remember the study is by St Mary's Paddington and Middlesex Hospital and involves giving DNA via blood samples which are compared to the DNA of your parents and siblings.

I'm seriously considering taking part in the study (if I can convince my family to do it) but wondered if anyone else has taken part or has any knowledge of it that they can pass on.

Thanks

Julia

eb3b · 04-08-2003, 06:08 PM

I got a letter too - from St Mary's which is where I am going for my Clomid and monitoring. Still haven't made up my mind about it, for much the same reasons that you are debating it.

Can't give you any more info that what you already know.

Btw when you say 'Middlesex' do you mean the Central Middlesex'? Or a different hospital?

Safia

jujuQ · 04-10-2003, 10:57 AM

Safia,

As far as I know it's just called The Middlesex Hospital, it's one of the UCL hospitals in central London (Cleveland Street to be exact).

I'm sending my parents a copy of the letter so they can decide if they want to take part. However, I'm surprised that no-one else on the soulcysters website knows about this study as it seems to have been going on for a couple of years!

Let me know if you decide to take part.

Julia

eb3b · 04-10-2003, 12:26 PM

Ah yes I knew I knew the Middlesex - my aunt has to had to go there a couple of times for various ops (and she lives up in Letchworth!).

I will let you know if I go ahead. Let me know what you decide and if you go ahead what it involves and how it goes.

Safia

jujuQ · 04-10-2003, 02:38 PM

Jeannie,

Don't apologise for asking, I'm always happy to share! Dr Gerard Conway is a Consultant Endocrinologist at the Department of Diabetes & Endocrinology, The Middlesex Hospital, Cleveland Street, London W1T 3AA. He's a specialist who mainly works privately and in research but also has some NHS appointments. I too had PCOS for 10 years before I pushed for a referal. At my first appointment he was really lovely - knowleagable and understanding and he immediately put me on Met and Spironolactone (for hair loss). As you can see the Met had a very dramatic effect on me (not only did I immediately start to lose a lot of weight but I became fertile!!).

Now for the bad news... When I found out I was pregnant I called Conway's sec to get advice on continuing the Met (there is lots of evidence recommending it for first trimester as it greatly reduces risk of miscarriage). The message from Dr Conway was to stop taking it immediately - advice which I didn't agree with so continued taking anyway. I was a bit disgruntled about this because he should be up to date with the latest research proving the benifits of continuing met whilst pregnant. I thought I would tackle this issue with him at my next appointment in January when I was 15 weeks pregnant. However, after waiting over an hour in the waiting room (I also had quite a long wait at my first appointment in August) I didn't even get to see Dr Conway in person - I was just fobbed off with a registrar who had barely any knowledge of PCOS and had to keep popping next door to verify my questions with Dr Conway. I was then told not to make an appointment until I'd finnished breastfeeding although I know from listening to other people in the waiting room that it can take up to 6 months or more to get a new appointment!

I don't want to put you off going to see a consultant as getting the right medication was the key to tackling my PCOS, but I thought it only right to share my full experience.

Good luck with finding a good consultant.

Julia

squidge63 · 04-10-2003, 06:43 PM

Unless you go privately, Consultants usually only see patients for the first appointment and maybe a few after that... but then you are usually seen by the registrar... i havent seen my consultant for about 15 years, i have always seen the registrar.. some have been good others have been a total waste of space.. one that i can think of turned round to me and said "oh i dont think you have pcos".. hmmm funny as my teststerone is always raised, it was shown by laparoscopy back in 1981/2 and by ultrasound... dont know what planet he came from...

I am under Dr J Cassar at the West Middlesex University Hospital in Isleworth Middlesex...
I am in the process of changing my diabtetic Consultant to a nearer clinic in Epsom rather than Roehampton... the Dr i was under there is Dr Kevin Shotliff who is at Kingston Hospital in Surrey, i have found him to be very knowledgable on pcos and he is human and you can talk to him.

Squidge

eb3b · 04-11-2003, 06:42 PM

Hi Jeanniepoppers

I asked to change from the dreadful Central Middlesex to St Mary's.

I hate Central Middlesex anyway, but i didn't see the consultant just the registra for the 'booking in' visit as it were. She was very brusque and unfriendly. Before my second visit I fell pregnant for the first time in 6 years of trying and was actually miscarrying in hopital on the day my appointment was due. However I was in hospital because I was in severe pain and went to St Mary's A & E. They were concerned it was ectopic (hence the hospitalisation) and even though it wasn't the staff I saw then and at the check-up a week later were superb.

There was a C4 prog on them a month or so later too. They are pioneers in the UK for recurrent miscarriage problems. The whole department for fertility/gynae/natal etc is excellent.

I see the same consultant every time and they make a point of making sure that they do every scan you have too. I see Dr White who is very nice and strikes me as very competent.

Now I know I am TTC and that may make a difference to who you see or how you get a referral, but if you are near there then I can recommend them and their department.

Just pasing that on!

Safia

eb3b · 04-19-2003, 09:03 AM

BTW I am going to go for this research thingummy. Spoke to Dad yesterday who is happy to join in (my mother died when I was young so it'll just be him) and I have yet to get hold of my brother.

Will let you know how it goes, though really I don't think there is much to it.

Safia

eb3b · 05-04-2003, 07:39 PM

Well i have yet to do it but I've spoken to them and they want to use me but can't use Dad (only using both parents) or my brother (he is a half-brother not a whole one). But there are two different tests they do. there is the one most people are doing - an egg-cup full of blood and they do cholesterol, insulin, diabetic and gene testing on it.

But there is another one and I've said I'm happy (!) to do it so I'm going to. It takes 3-4 hours (!!). The take blood every few minutes and you have two shunts - one in each arm (why did I agree to this again...?!). The give you a load of glucose and then take the bloods over a prolonged period to see how your body deals with it.

Anyway I just thought I'd pass that on cos this more detailed study isn't mentioned in the letter they send you.

I will let you know how I get on once it's done - maybe in a few weeks I think.

Safia

jujuQ · 05-06-2003, 10:11 AM

Safia,

I was about to send my form back today as my parents have just given their approval but I've just read your post and I'm scared!!

I shouldn't be a wuss but I'm very difficult to get blood out of cos I've got very deep lying vains so they always have to take it out of my hand which can hurt a bit. Being pregnant I'm having to have lots of blood tests and they are never as bad as I expect them to be so I guess I'll be brave and go for it.

When are you going in? Good luck and let me know how it goes

Julia

eb3b · 05-06-2003, 05:40 PM

Julia

Please don't panic. The one you'll be doing is just a quick blood sample and that's all - as it explains in the letter they would have sent you. They asked me would I be interested in doing this other one in part cos they couldn't use my family for the main one but also because I am only slightly overweight and most of the people doing this 3-4 hour one are large cysters and they were interested in having a not so large one. The normal one is 5 minutes in and out!

I will let you know how it goes, though....!

Safia

Tassy · 05-12-2003, 07:37 PM

Hi
I took part earlier this year - I had seen it in the Verity magazine.
My dad is dead so my mum couldn't take part but my sister did which apparently is really important as there are not too may sisters in the study. They take quite a lot of blood about 15 test tubes!! sorry but you should know and then you have a scan which is no prblem. You get lovely tea & toast which believe me you need after fasting from the previous day!
The nurses are lovely and they make you feel very special.
After the results are in they send them to you and your docs and give you a call to explain them.
One thing to remember stop taking metformin before you go because it interferes with some of the tests - but not the DNA one though.
Good Luck
Tassy

mix · 05-13-2003, 06:27 PM

i would have LOVED to have been part of this test. i'm in the states now though. damnit! >:|