Sticky Blood-Hughes Syndrome Support

Thinking of being referred to Addenbrookes

Hi Everyone. I go to St. Thomas' about twice a year, seeing various consultants. I had sagital sinus thrombosis in 2009. The past 2 or 3 times I have been a bit disillusioned with the advice and help from them. I have had quite a few 'flare ups' over the last year getting worse since September. I have had a lot of time off work but am now in early retirement thank goodness. I have had type 2 diabetes for about a year. Basically on the last visit to St Thomas' my 'flare ups' were dismissed as due to the diabetes. Yes I know I have to lose weight and eat healthily but easier said than done when it's hard to move due to the aches in my muscles and joints. My INR is all over the place as well (I now self test and aim for 3.5 - 4). My last blood test showed 'Inflammatory markers' according to my GP. So, my question is: has anyone had experience with the rheumatologists or haematologists at Addenbrookes? (Found names from APS Support UK). I was thinking of asking for a referral there as it is nearer to me than London and also I wonder if I would get more help and support from them. Thankyou.

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Hi, I know exactly what you mean about St Thomas's - I have not seen Prof Hunt for over 20 mths, the last time I was up in November, I only got to see a specialist nurse!

I personally am trying to stick with St Thomas's as I have other issues and they have all my notes for over 15 years but like you are getting very fed up travelling up (I'm in Devon) and then not getting the results and more importantly the support I need. I am looking at moving to Taunton where there is a specialist and only 20 miles from me.

I have some experience with Addenbrookes but on a vascular basis, but this was 10 years ago, I had angioplasty on my sub clavian artery. Back then they were very informed of APS and communicated with the haematology dept - I was really happy with them, I hope some others come back with the same good reviews as me, more recent though.

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Thanks for you help. I was in Addenbrookes when I first had my clots. I was fairly impressed with the neurology guys but there was a bit of confusion about APS at the time. I've got an appointment at St. Thomas' next week I might just ask the question.

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Will be interesting to see what they say, let us know?

Hope appointment goes well.

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Just seen a report that Addenbrookes has been awarded a centre if excellence for Lupus.

So may follow excellence for APS? Who knows?

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Hi, just wanted to say be careful Holly about giving up St. T''s for Taunton. I see the lead Rheumatologist there & she is not great. I also go to Guys & she is quite defensive about this & I have the problem of them both saying different things e.g Doctor at Guys told me to stay on 5mg. Steroids, she is trying to get me off them. This is worry for me as I have progressive Pulmonary Fibrosis now (? Caused by Sjogrens) without steroids I have nothing protecting me at all! Having said this I am keen to be seen locally incase Guys dump me no win isn't it? If you want any more information P.M me

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Thanks for information, I will see how I get on with my next appointment at St Thomas with Prof Hunt. I will ask them too.

Presume you live near Taunton?

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Yes about 6 miles away

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Given what I have laearned as a patient from Cleveland Clinic Functional Medicine, I would suggest that you explore trying a “paleo” diiet, which is similar to the “detox” diet I was put on when i first consulted there. My inflammatory markers were high, I had suffered from transient low blood sugar events, plus difficulty sleeping through the night, and various annoying GI problems. By changing my diet all that went away —- and those high inflammatory blood markers dropped to normal. If you have the option, don’t try this alone, but look around for a nutritionist or an alternative or functional med practitioner.

Those first few weeks on the diet I would look longingly at the foods I was not allowed to eat. But after the health benefits began to accrue — Nada, No Way! I will never go back to eating many carbs/ sugars again.

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