Sticky Blood-Hughes Syndrome Support
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Feeling let down

Hi everyone,

After not being seen by a specialist in 13 years from being diagnosed with APS i asked my GP if she would refer me to see one of the rheumatologists recommended on this site. When i went to my appointment i wasn't seen by her but someone else. Unfortunately i had trouble understanding her accent (so did my sister) i took all my test results, wrote a family history and a list of all my trouble some symptoms that i had been experiencing, such as insomnia, pain and fatigue etc etc so that i wouldn't forget any thing but the only thing she discussed from my list was that fact that id thought that i may of had a heart attack or some thing at xmas (my gp just said must be muscular) and she wants me to now go on Aspirin as well as continue to take warfarin which is a worry. The rheumatologist didn't even go through the blood tests that i had done by my gp which i only remembered when i got home! Im waiting to go and have a test now at the cardio department. I came back from my appointment feeling upset and thinking whats the point as i still haven't had anything to help with my symptoms.

Any way i have tried my best to look up my blood results via the internet until i see my gp about them. My serum c reactive protein level was 6mg/L [<5.0] which is higher than the norm is that level ok? I also had a speckled ANA result (weak positive/borderline) does anyone know what that means?

Thank you in advance for any replies. Keep up the good work admin team.

I'm going to London in July so may book to see Professer Huges. If its not to expensive.

9 Replies

Your last sentence sounds good indeed; your are going to see Prof Hughes in July when you go to London.

If so you must book at once as I know he is exstremely busy and everyone wants to see him also.

Ask for copies of all your test and blood results. Good perhaps that they will cheque your heart. You know this illness can affect all parts of the body.

Warfarin is the main treatment for APS. Try to keep the therapeutic value in range. My INR is 3.2 - 3.8 and I selftest to keep it steady.

Good Luck to get to see Prof Hughes or someone who knows of APS very well.

Kerstin in Stockholm


You need to go back to your GP with your sister and explain that the appointment was not good enough and not with the recommended specialist off the list, insist on being re referred or find out when your next appointment is at the hospital and then ring up the actual specialists who you were meant to see, secretary and explain that you did not see who you were meant to see and state clearly that you do need to see them, due to how unsatisfactory it was and that they must bring your routine scheduled appointment forward. Sometimes when clinics are busy they put you with somebody else, I refuse point blank to have those appointments and insist on the right person, unless I know the other one and know they have read mine or my teenagers notes. MaryF

1 like

Hi Mary,

I have a copy of the letter that was sent to my gp, it states that i don't even have fatigue how she assessed that without even discussing it with me is beyond belief. I struggle on a daily basis with fatigue as do many others.I have to go back in a years time. I will be seeing my gp soon so i will explain that it was a waste of time and ask to be referred again. thank you for your reply. x


I agree with Mary. I would write a letter to the specialist you were due to see, saying that you had been referred to him/her NOT the Dr you had ended up seeing. Enclose copies of the tests you wanted them to see and list all your symptoms in bullet form. In short get everything down that you wanted them to see and explain that you insist on coming back for the appointment that you should have had.

Send that all to his secretary. You can find out his address by simply calling the hospital and asking the switchboard to put you through to the Dr's secretary. When you get through ask for their mailing or email address. If they ask you what for put them off and just say you need to send Dr? a letter. If you get nowhere send it all to the Hospitals PALS service and tell them you will make an official complaint unless you are given an appointment.

Sometimes you just have to make yourself heard. Its possible that the specialist themselves are not even aware of any of this and some administrator assigned you to this other Doctor maybe even thinking they were helping you to get seen quicker. Remember it is your right to be seen by who you chose not by who they say you must see!

Good Luck and let us know how you get on.


Hi APsnotfab,

I shall write a letter as you suggested and hopefully get to see the Specialist that i requested. I will let you know the outcome. Many thanks.


Ring up the secretary of the Specialist and then ask the secretary for their email address write it to that address marked for the attention of the specialist. MaryF


I agree with Mary. I did not realize that you did not see the actual Specialist who knows about APS.

I would also refuse. Mary knows these things so well. Good luck!


1 like

Thank you x


Hi Kay

I agree with my two admin colleagues and with kerstin too.



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