Sticky Blood-Hughes Syndrome Support
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Only in my head?! Really?! OMG so frustrated. Has anyone been to St. Thomas and what are the costs?

I, like so many others, keep getting told that this is in my head. I was diagnosed in 1996 after multiple miscarriages, but now the hematologist is gone and no one believes I have APS. (Even after using Heparin and aspirin to carry to term; the latest hematologist said it was a 'fluke' and had nothing to do with the Heparin)

I've dealt with the fatigue for years, and all the other associated auto-immune symptoms: lymphocytic colitis, tinnitus, tingling skin, migraines and now, the unbearable joint and muscle pain and unbearable fatigue. I am on no medication and am at the point I will fly to freaking London.

Has anyone been to St. T's from overseas? What is the wait time and more importantly, (GULP!) what are the costs incurred?

7 Replies

Hi there not sure about the costs of going to St Thomas on our NHS, but you could go and see Professor Khamashta at London Bridge Hospital, as you would be paying anyway. You poor thing, what a stress, however same for lots of us on here! At least it would sort you out, and you could shop around for cheapest fares MF


I have contacted London Bridge and the receptionist is forwarding my email to Dr. Hughes. I would see anyone there, Mary and will do what it takes! Am wondering if anyone has had to pay out of pocket. I'll do some research; perhaps it would be partially covered on my medical plan.

But it gives me the perfect reason to come to London! :)


Should be easy to look at your first blood test to see is you ever had APS.


You'd think.


hi i just booked to day to see Prof K at london bridge - i truly feel your frustration hun - cost £230 he works every thursday so i was so happy to get an app for the 31/5! last app is at 12.30.

cant afford to go private after this but i just need clarification and piece of mind i defo got hughes in flare having tia's but fibro dx means aps been ignore and the severe fatigue muscle pains etc i believe is due to aps not fibro so hope he can advise my team if then its decided i got fibro not aps related symptoms i can accept this then move on - but i strongly think i have a endocrine issues hopefully will have a cure rather than treat symptoms only... kathy x good luck


Kathy have you had your thyroid checked too? Fibro symptoms can also be similar to Hashimotos (thyroid antibodies) which are also very common with Hughes or it can be both which I have. Its difficult sometimes to know whats causing what.

I have been on Plaquenil for four months now and that is starting to help slowly. Prof Khamashta will sort you out Im sure. I see him next week too. Good Luck.

Siveinvan, if you did decide to come to London Im sure you would not be disappointed. I went to Prof Hughes at London Bridge for my dx and personally it was priceless and worth every penny. Whatever he told you at least you would come away knowing where you stood. Good Luck to you too.


HughesPatient: That's exactly what I'm thinking. I have been two years trying to locate medical records from Women's Hospital, going to different specialists; it would be grand to just have some answers! Thanks for all your support!


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