how to get my doctor to make referal to haemotologist

Hi

I wondered if anyone could help, am brand new to this forum and wondered if anyone had any good advice. I was very recently diagnosed with APS after 2x blood tests after a miscarriage. My ivf clinic made the diagnosis and I have asked my own GP to refer me to a haemotologists. Despite the ivf clinic having sent my blood results thorough my GP is insisting on a letter from them with a recommendation for referral. I just feel that the medical professionals dealing with me have limited knowledge as the ivf clinic said I was borderline when infact I am not, I got blood results of 17 then 18 and the normal range is 0-10. Has anyone had similar trouble getting a referral (surely my right as a patient?) I wondered if anyone had any advice on what I can do ad the GP is insisting on this letter whereas the ivf clinic are saying, we are not writing one as we have forwarded the blood results. Thanks so much in advance x

33 Replies

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  • Hi there, a good starting point would be to email the list of specialists to your GP's secretary. hughes-syndrome.org/self-he...

    As you need to have a haemotolgoist/rheumatologist with up to date working knowledge of the condition.

    MaryF

  • Thank you Mary, I will do that.

  • Hello and welcome

    As my colleague, Mary, has said you should let your GP have the list of APS specialists that she has sent you the link for.

    Where are you from?

    Best wishes.

    Dave

  • Hi Dave

    I am in the North West and have accessed the list of specialists in that area. The main concern is getting the doctor to agree to the referral as the ivf clinic are saying they don't need to do anything really until I get a positive pregnancy result but my argument is, we are talking the rest of my life here not only pregnancy related stuff but potential early strokes and heart attacks. I know my results are luckily, fairly low but I prefer to be in the best hands possible. It's like the doctors are not getting this bit. Thanks for your help.

  • I do agree with our adminstrator Mary.

    There are very good pocket books about Hughes syndrome (APS). I started with Kay Thackray "Sticky Blood Explained".

    To get a diagnose and to get a doctor that knows what APS is, are the two first and most important things.

    I wish you good luck. I have APS and live in Stockholm and I am happy to follow this site.Stay on it!

    Kerstin

  • Hiya Kerstin, my ivf clinic have diagnosed me and they wrote it on my notes when I went to theatre for my ivf operation. They have also given me heparin injections. Am I right in my belief that you have to have regular checks for your platlets/bloods? Am concerned that if I am not referred to the correct professional that these checks will not be done. I actually said that I was going to put an official complaint in so after this I got a call from the doctor's receptionist and they say they are now going to deal with it, so will see.

    I will stay on the site. I think it's fantastic that there are other people like yourself who are kind enough to offer me help and hope one day that I can help others too.

  • Hi again,

    As I live in another country I am not the right person to answer your above question. I know nothing of heparin as I am on warfarin.

    I hope you have an answer which is better than mine. Good luck with everything!

    Kerstin in Stockholm

  • Thanks Kerstin.

  • Am starting my heparin injections tomorrow. Is there a recommended time of day to take them as it does not say on my meds label? Thank you.

  • Hi.

    I take mine at 7:30 each morning, as the half life of Heparin is relatively short and by taking them in the morning I find that I get the best symptom relief in the daytime and I'm asleep at night, so symptoms are not such an issue then. One of my Admin colleagues on here takes her's at night, as she finds less bruising occurs if she is relatively still in bed, compared with moving around during the day.

    The secret is to: (a) pinch some squidge, as it shows in the instructions; (b) insert the needle at right angles to the tummy; (c) inject very slowly and not too near the navel, as that can be very painful; (d) wait a few seconds before pulling the needle out; (e) do not rub the injection site; and (f) have some cotton wool balls to hand and a tear off a smallish piece to use to apply pressure for a short while if the injection site bleeds, mine only does very occasionally.

    What Heparin are you on and did they calculate the dose based on your body weight?

    Best wishes.

    Dave

  • Hiya Dave, Thank you for your reply - that's a great help. I'm on tinazaprin (may be incorrect spelling) which is a low molecule heparin. I am on 4500 and I believe the max is 5000 (as the anesthetist told me this. I don't think they have therefore prescribed based on my body weight as I am just under 9 stone. Do they usually do that then? Hope they have got it correct. What dosage are you on?

    Hazel

  • I take Fragmin and the therapeutic dose for me, at 83kg body weight, is 15,000IU per day.

    We are not doctors on here but I would ask them to check the dose to make sure it is the right therapeutic dose for you weight and not a prophylactic dose, as would be used when someone is on Warfarin but their INR is unstable and sometimes to low.

    Dave

  • Oh dear, am worried now -does that sound too low? Bet I am about 58kg. I will see if there is a chart online. Not sure what a prophylactic dose is.

  • Hi, I guess you have already found that they are talking of heparin on this site today! Kerstin

  • Thanks Kerstin.

  • Actually there is a slight misconception about the dose being based on weight. I asked Prof H about this as I am not dosed based on that if I was I would need to be on a higher dose. The dosing on weight is for when someone has a clot but we are injecting to keep our blood at the right consistency and prevent clots so its slightly different. He did give me the explanation but Ive forgotten it now :-(

    BTW Welcome to our forum. Im sorry you are having problems getting referred but if it continues just write to your practise manager and tell them that you want it written in your notes that if anything happens to you your family will hold them directly responsible for their failure in their duty of care. They won't want to do that so Im sure they will respond. Its just a funding thing due to the CCG's. Stick to your guns.

  • Thank you - the info you provide here is very valuable. So does my dosage sound about right to you? I spoke to the GPs secretary on Friday and said I would put a complaint in if they did not do the referral and then a lady rang back and said she had been put in charge of dealing with this and would ring the ivf clinic on Monday. So I will wait to see what she says tomorrow and if not , thanks, I will write that letter. Their argument is that the ivf clinic have not sent a letter through telling them I have antiphospholipid syndrome but I have informed them and surely they should chase this up (as I have tried).

  • Hi I did heparin injections when I was pregnant. I used to do them first thing in the morning to get them out of the way. I wasn't told a specific time to do them. I have also had trouble getting my gp to refer me but this was after pregnancy as I was told I didn't need any help. I have only just seen a heamatologist and been put on warfarin for life because I nagged and begged my new gp to refer me. Fortunatly she knew abit about APS and believed me. I hope U get all the help U need just keep on at them and good luck for the future xx

  • So glad you got your referral in the end. I don't get what their problem with their attitudes like it's nothing!!!! Argghhh! Makes me so angry about it - what I do know is I won't let this go. So how did you get them to refer you in the end and where your blood tests gone separately from your GP surgery?

  • My symptoms were getting worse and I just explained to my gp how worried I was and she referred me. I had tried with 2 other gps but with no success. The haemotologist didn't do a blood test just asked questions about my 3 pregnancies ie what meds I took and how far each pregnancy went. Also what symtoms I have now. Then said I should be on warfarin and said to see my gp and she will start it. Its taken me 17 years from diagnosis to get sorted so hope I will start to feel better soon. Definitely dont give up we have to be strong. Good luck :)

  • Sounds like a right nightmare! Glad your sorted now. This forum has given me even more fuel and inspiration to get onto them tomorrow.

  • Hi, sorry to hear you have been having such difficulties. I live in the north west also - near Clitheroe. I am waiting for the results of my third blood test to confirm if I have APS or not. My blood results have been 22 and 35.5 so far. I had been referred to a haematologist at my local hospital after having a TIA last september. I haven't been happy with the haematologist I've seen, he's been very dismissive, not listened to my own info/history (mother had APS) and has a lack of knowledge of APS. After my last appointment I asked my GP if he could refer me to see a specialist at Manchester Royal Infirmary, I got the contact details from the hughes-syndrome.org. I received a letter from Manchester 3 weeks later with an appointment to see them. I was astonished but really pleased I had persevered! I am seeing them in two weeks. I know it may not give me all the answers but its a step in the right direction. Sam

  • Hi Sam

    That's great you got your appointment with the specialist but a pain you had to be messed about seeing a haematologist with limited knowledge. So from your last appointment to the date of the specialist appointment, how long will you have waited all together? Just wondering how long the referral will take once they finally do it. Will make sure I request to see the Manchester one too. I live quite close to you then, I'm about 12 miles from Clitheroe.

  • I received a letter from Manchester with an appointment 3 weeks after my doctor wrote to them. From the date my GP wrote the letter to the appointment day is approx 6 weeks. Hope that makes sense…!?

    A small world then…not far!

  • Oh good, that's quick. I am going to see if they decide to refer me and if not I am going to make an appointment with Proff Hughes as someone else on here suggested for me. Is the one in Manchester one off the list of specialists on the Hughes Syndrome website?

    BTW, why are you having a third blood test if you don't mind me asking? I thought the requirement was two? I have only had 2 and they have confirmed it.

  • aren't doctors wonderful. I've been complaining for almost a year about the dizziness and nothing was done. I came onto this website and was told about a drug betahistine , thank god for this website. I believe if you follow and read some of the stories you will know where to go and have more knowledge then the doctors you see.

    best of luck to you and hope you find answers here.

  • Hi

    Thank you. I defo have more knowledge than the doctors I have seen thus far. Have you managed to get referred yet or are they dismissing your dizziness?

  • I have been on betahistine for about a month now and it works better than any other drug I have taken. it was prescribed for me when I asked my primary care doc. after hearing of it here on health unlocked. I begged all my specialists for something to stop the dizziness but no one did anything. I no longer see any of those doctors or specialists.

    Mary F and APSnot fab and many others helped me by telling their story and experiences. god bless them, without them I would still be suffering.

  • Yes, the support seems fabulous. Not surprised you don't bother seeing those other doctors/specialists anymore sound a waste of time.

  • Hiya

    How regular do people on heparin have bloodtests to check their platlets? I hear this is an important part of the monitoring when on heparin. Thanks again for your help

  • I have mine checked every 6 months.

  • Thank you APsnotFab.

  • My Pleasure! :-)

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