I had no idea that getting a simply. Referral could be so difficult. My GP has messed me about for the last 2 weeks and has now recommended I have blood tests instead of seeing one of the specialists at St Thomas's. Does anyone know if I pay to go to London Bridge if and am requested to have blood tests if they can be done on the nhs and will I need my GP to request them? Totally fed up!!
GP refused to make referral - Hughes Syndrome -...
Hughes Syndrome - APS Support
I have been to London Bridge many times and have then had the bloods done on the NHS.
Thank you. Would it be best to have the consultation first and ask the consultant to give me a list of the tests I need to have done. My GP is not very helpful and I'm concerned that he won't do them if I ask but he may feel more compelled to do them if he knows a consultant is requesting them.
Hi Dee, While you are waiting to get an APS-doctor, try to push your doctor to let you have a little higher INR, as you are on warfarin but on too low INR and with neurological symptoms. Hope you must nu wait too long.
Best wishes and good luck from Kerstin in Stockholm
Hi Kerstin I've just received some good news. The practice manager has advised me that the referral has been sent to St Thomas's. Therefore I won't have to pay to go to London Bridge, just wait for an appointment letter. I will be seeing the INR nurse on Wednesday so I will ask her if I can push my INR up as I'm not feeling well. Would you say that the feelings are flare ups that will pass when INR level is higher? Thanks Diane
Hi. I am talking from my own point of view. I know that if I have too low INR I get my symptoms back. I know your therapeutic range is between 2.0 - 3.0.( Hope I do not remember wrong now). If you have symptoms, that I have understood you have, I would ask to be kept close to to 3.0. I feel best around 3.5 but we are all different. The doctors are so afraid to let us up. I have never had a bleeding.
2-0 - 2.5 is for most of us too low INR. Your present Doctor perhaps do not want to change your INR at this moment but you can say that you have more symptoms.
I am so glad that you have so good news Well done!
Wish you luck on Wednesday to have almost 3.0. I think you will feel much better then.
Best wishes from Kerstin
Ok thank you
Diane. It is great that you have a referral to St T's but unless things have changed, it may take a few months to get the appointment, n which case you might indeed try and get them to go with a higher INR. Many of us feel less than at our best when our INR is lower than it should be. My target is 3.8 to 4 and I usually feel rougher under 4 that I do over 4.
Like many others, I self-test, in my case every other day at least, and self administer so can aim a little higher if I want to.
And just a note of encouragement for those who may be starting out on warfarin when it can be a bit scary, I have been on it for over 40 years- and I guess quite literally wouldn't be without it- and my masses of bruises!
Thanks for the advice Tim. I have thought about self testing before but I was told the machine can be quite expensive. I'm not certain what the nurses response will be to me raising the INR, but I can always contact the heamatologist too. Does anyone know if the nuero problems get worse on a low INR? Or would the problem be higher risk of stroke ect?
Hi Dee, Yes the neurological problems get worse on a low INR. It is a higher risk of a stroke as you are not well anticoagulated. As Tim is saying his target is 3.8 - 4.0. My target is only around 3.5 to feel good. We both selftest.
Having APS and taking Warfarin is more difficult than for those without APS. Many doctors do not understand this fact. For some of us it is very difficult to keep the INR steady which is what we have to to. The doctors are afraid to let us up in INR because of bleeding and we are afraid of go too low as the symptoms return.
You have to talk to your doctor and tell him that you get your symtoms back (the doctor must change it, not the nurse, because he is responsible for your illness) and ask him to put you on a higher therapeutic range. When you selftest you can decide for yourself if you want to be on the higher side of the therapeutic range. We that selftest (I do it every second day) we know how the INR goes up and down and can do something about it.
If you cheque at the lab the INR every 4 - 6 week you do not know that you are too low during the weeks but you notice it as the symptoms start coming back.
Good luck from Kerstin
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