New appointment went rubbish

Well we visited a blood man at Sheffield hallamshire hospital and he has tested me again and said he can't find APS! He has said we can have 40mg of clexane and 75mg aspirin. I'm so upset because now I don.t know if I have it. My last positive tests where 07 I've not been tested again since may this year! Anyway I'm so upset now because I don't want to have something wrong with me but i'm hoping I do so l can have a reason for losing them.

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  • Hi Hanna,

    I`m so sorry for the trouble you having with bloods, I don`t have positive antiphospholipids, but have lupus anti coagulant positives and positive ana`s. diagnosis is hughes, fibro and lupus overlap.

    I know how you feel cos I have lost a fair few much wanted babies over the years and was desperately needing a reason.

    Lots of people are sero-negative and have hughes, hang in there hon.

    Can you get a referral to St Thomas`s, or have you been. I hope you can get some help hon you sound so fed up.

    Glad they give you Clexane and aspirin, they must think something going on!!!

    Thinking of you, Take care, gentle hugs love Jessielou xxxxxxxx :-) :-)

  • Hi jessielou thank you for your email you are right I am feed up. I worry my husband will stop paying for ivf after it's nearly 4000.00 a go. He would be happy at us having one due to heart ache and money. We went to st Thomas and our going back there once we get a positive tests from ivf and hopefully we can be more clear then. It seems to be alot about the consultants opinion more than anything.Like you say at least they are giving me clexane once I get pregnant and aspirin.

    I.m sorry you had miscarriage heart ache, no matter what the cause it's so cruel.

    Thank you again I hope to get to know you alot better xxxx

  • I too have seronegative Hughes and probably so do two of my children, trying to get a referral from deepest East Anglia is like jumping through burning hoops with your pants on fire, PCT's can at times be policed by prickly individuals who are unable to take a balanced overview, be calm, consistent and keep detailed notes where you can. I have finally after being ignored for 10 years, managed to get a referral to St T's... however, still pushing for my children. Insist if you can on a referral to St T's and take somebody with you every time you go to the GP and ask for this. It is a real cop out for medical staff, ( a few), to always opt for the depressed,label for patients due to their own supposedly ongoing medical training not being kept up to date and if their own medical training has not led them in the correct modern direction. The best of luck. MX.

  • Hi mx, i'm sorry it has taken so long for you to get referred to st Thomas. We got referred as soon as we asked. However it was bitter sweet as I was told in 07 after 2 positive tests I had it, to then be told by st Thomas they couldn't find it! I was so upset as I thought and still do at least there is a reason that can me medicated for me to have another baby.

    I so hope your babies get the referral they need and my thoughts are with you xxxx thank you

  • Hi Hanna,

    I am really sorry to hear what you are going through i think Mary and Jessie have covered all i was going to suggest but just to back it up Get your Doc to refer you to ST toms if not get the GP to do it you will get a definate answer then

    paddy

  • Paddy thank you for your thoughts we have had a referral but to no avail. Test came up negative so they have now said once we get pregnant we go back and they will treat us and take it from there.

  • Hi Hanna,

    I'm sorry for the way you are feeling at the moment.. you must feel completely lost and confused. When I lost a baby at the beginning of the year I was referred to a miscarriage specialist who picked up on my APS (the 3 month wait inbetween the tests were the longest ever and like you I did hope it was positive so I could make sense of my awful loss). There is obviously something going on even if it's not APS. As you are having expensive treatment and suffered more than 3 losses I wonder if you could be referred to a miscarriage specialist. Have you heard of natural killer cells? There are so many other things that can cause losses- I was tested for a whole bunch of things and have APS and Factor V leiden. I hope you find an answer soon. I'm glad to read you do have a little one- such a blessing. All the best. Rebecca

  • Rebecca gosh you have been through it too so my hat goes off to you for staying strong. Thank you for your kind words and we won't give in. Scarlett our little girl makes it all worth while xxxx

  • Hi Hanna, I would recommend getting appointment with miscarriageclinic.co.uk to get a complete picture of what is going on. I think the consultation and tests privately are about £200 but at least you wouldnt have to wait and if it's going to save over £3k it's def worth it. Dr Shehata is such a nice man. I would recommend him to anyone who has lost late into their pregnancy or several times early on. He will put a plan of action into place especially for you. You are so lucky to have your little girl.. I know I need to be more postive that my baby will be ok. xxx

  • I'm trying to get an appointment sorted by my doctors thank you for the advice x

  • Thank you so much for your kind words girls, we have been to st thomes hospital and they got a negative too! Our only 2 positives were in 07 jan and and 7 weeks later another positive. Since then nothing as I had a baby and for 3 years haven't been tested due to not needed to be. Gosh what now with paying 3700.00 a go of isci ivf it's harder to feel positive! X

  • Im exactly the same so dont despair - all the symptoms,positive anticardiolipin in pregancies,yet trying to find it in my blood after is hard cos the little buggers hide! My GP is very understanding and sent me to a lupus excellence centre in birmingham, and Proffessor Gordon is very much of the same trail of thought - bloods are not all what theyre cracked up to be,and not the be -all-end-all. Proff Gordon was willing to give me a label of 'probable' APS based on CLINICAL EVIDENCE. Awaiting bloods which some have come back positive and some negative - just to add to the confusion!! My GP is still pushing for a label of APS. If it helps you need to be aware that you can request to see any hospital and any consultant you wish in the NHS - Heamotology and Rheumotlogy both said to me at my local hospital they knew nothing about Anticardiolipin antibodies/Hughes and sent me packing - they wouldnt even diagnose me with Raynauds because my fingers went black and not white!!

  • Sorry - one final point, I had a little girl after a late loss in 05 - and was given 40mg clexane and a 75mg aspirin and although it was still a rough ride she was born early at 36wks and healthy. I lost another boy in 09 because i heammorhaged for weeks and couldnt take the clexane for bleeding further risks and i lost him late too. I then was prescribed a high dose (5mg) folic acid and took that through the whole pregnancy and delivered him by c section. Im sure if you demand these drugs you will be fine - and it should be enough to get them based on one reading of positive antibodies no matter how long ago - i would write a letter to the consultant - cc your doctor and if you get nowhere then PALS. After two years of being palmed off i have learned to shout to anyone who'l listen rather than take ny chances. I hope this is of help x

  • i think its also standard procedure to have high dose folic acid in ivf aswell as the progestorone pessary - i promise thats it - sorry i just feel very opinionated on this matter because ive been through it and know only too well how blase they are about losing babies x

  • Wow Emma you have been through the mill i'm glad you got there with 2 babies, it must of been so hard losing them late i am lucky i have only lost no later than 13weeks. i will give them the info on the folic acid and try to sort that, i do have extra help when having the ivf until about 12 weeks with pessarys. saving up now to go for ivf next month i think! thank you for your kind words and thinking of me xxxxxx

  • ill wish and pray it works out for you - i always thought if the blood was being thinned out then would it affect the levels of vitamins etc, and the folic acid is the building block for every organ including the placenta which is the biggest organ a body has to make and so very demanding - take care and i hope to speaksoon with good news xxxx

  • Thank you Emma will keep you posted xxxx

  • Hi Hanna

    Hope you don`t mind I deleted the duplicate post hon,

    Take care gentle hugs Sheena (Jessielou) xxxxx :-) :-)

  • Hi hanna

    how you doing hon? Hope you well

    take care gentle hugs love Sheena xxxx jessielou xxxxxx :-) :-) :-)

  • Hi Hanna

    After 10 preganancy losses I managed to get a referral to the Recurrent Miscarriage Clinic at St Mary's Hospital Paddington, that's where I got a clinical diagnosis of APS, they gave me cleaxane and my GP gave me the pessaries and after 1 more loss I did have my daughter 5 years ago now (I did manage to carry and have a son 17 years ago amid the miscarriages but my GP gave me injections weekly which are not recorded anywhere on my notes so I don't actually know what they were!). I wasn't referred to St Thomas's until 4 years ago for other things related to lupus/fibromyalgia and APS but I still only have 1 borderline test for APS.

    It angers me so that the medical profession don't credit you with knowing your own body and what it needs. Research is the key - go in armed with as much knowledge as you can and demand what you want.

    When it comes to babies tho, Hanna, sometimes there is no reason. APS may not have been the reason for all my losses. The odds are some of them had not developed properly. At least 1 the sac had grown but was empty The point I'm trying to make, albeit rather clumsily is, there isn't always a reason and there never is a fault. it's nature and we have no control. and, honey, you have to accept this or you will never be at peace. You need the peace the get your baby. I will keep you in my thoughts

    With love

    Sharon x

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