What to do with conflicting opinions ... - Fertility Network UK

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What to do with conflicting opinions between my haematologist and my hospital relating to Clexane?

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Totally confused. Following my Anti Factor xa test my haematologist upped my dose of Clexane 60 as she said I was just under the protective level but following my first Consultant Obstetrician appointment I was told this dose is ridiculous for my weight and I shouldn’t be on more than 20 and they don’t put patients on Clexane at just because there Factor v Leiden heterozygous. They’re aware I’ve had multiple miscarriages but insist Clexane is unnecessary and referred me to their hospital haematologist. I will see what they say then speak to my private Dr. Any one have any experience of this? Don’t know who to trust. Nhs probably don’t want to give it out as it’s costing me over £180 per month privately but who knows. Scared to come off it as i’m 20 weeks tomor and this is the furthest along I’ve ever been x

22 Replies
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Oh nightmare Natalie, its horrible not knowing who to trust although Im not sure if you're paying for it why the NHS obstetrician is so bothered! I cant comment too much re what you've been told so far but Im starting 40mg of clexane for my cycle as per my clinic. I would see what they both say and weigh up the options from there, did the private consultant say you were to be on it all pregnancy?xx

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in reply to Cinderella5

H Cinderella, thanks for your reply! Before I could do my ivf cycle in the States they insisted I see a haematologist and she put me on Clexane 40 then just upped it to 60 2 weeks ago. She really wanted me on 80 a day but as i’m having nose bleeds she said let’s see how it goes with 60 but 3rd trimester I might need to go up to 40x2 and to continue until 6 weeks post birth. The hospital virtually laughed in horror at this which worried me massively. I’ll report back on Tues following my appointment with the hospital blood specialist then see how I feel and speak to private one about their opinions xxx

Cinderella5
Cinderella5
in reply to Hidden

Yeah hopefully the haematologist will support you or at least offer reasons why its not a good idea so you can then speak to your other Dr. Perhaps your consultant in the states could write to your obstetrician if the haematologist here doesnt support the clexane. Good luck, hope it goes ok!xx

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in reply to Cinderella5

Thanks so much! That’s exactly what we thought to do following the appointment! See what the Dr in the US advises xxx

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This sounds like a good plan. So sorry to hear about the situation though, really stressful and confusing, not fair to go through it on top of everything else. I hope this is clarified soon and you can put your mind at ease. Very best wishes xxx

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Thanks so much Vanna 😘. How are you? Xxx

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in reply to Hidden

another scan tomorrow... to see whether polyp still there... good luck to you!! XXX

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in reply to Hidden

Hope it goes well, let me know how you get on xxx

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in reply to Hidden

Thanks! Looks like there is no polyp anymore!! So let's see how things proceed this cycle...

How's the Clexane situation with you now?? xxx

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Hi Hun, I had a similar experience a couple of weeks ago! I had 2 missed miscarriages prior to going for my IVF in Greece where I had lots of tests carried out to see if they could spot a potential cause of my miscarriages. The only thing detected was a slight clotting disorder which the clinic put me on Innohep for. In the meantime I have been diagnosed with a hereditary bowel disorder which a blood vessel disorder can be linked too called HHT. I saw a professor at Hammersmith hospital who said she can't do tests to rule it out or confirm it until I've had the baby but she had no issues with me taking Innohep. I then saw the consultant & a haematologist at the hospital where I'm having my baby who said the Innohep doesn't help prevent miscarriage & it's a fad IVF clinics are all going through! I said I'm listening to my IVF clinic & staying on it to which the consultant frowned. I had just been starting to relax in this pregnancy but their comments put me on edge again. Like you , I'm paying for my injections not asking the NHS to prescribe it. I'm 21 weeks tomorrow & would be reluctant to stop my injections. Hate conflicting opinions. Xx

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in reply to Hidden

It causes such stress and worry! I’ll let you know how i get on with them on Tuesday and then what my private haematologist says in response to them rubbishing her approach that has basically kept my pregnancy going to this date. The Consultant admitted it’s helping the baby as blood is flowing freely and the drug is not crossing the placenta but they seemed shocked for my health and the dosage but I feel like you, why stop it? I don’t think they really know but clearly as a whole they don’t seem to believe in it until post partum where they do use it to prevent thrombosis xxx

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in reply to Hidden

Yes it's definitely causing stress & worry. It's strange too as another consultant at my NHS hospital apparently told my cousin who had 4 early losses that if she falls pregnant again she will be put on Clexane! I spoke to a Dr in Greece who said I should continue to take it so really don't know what to do for the best. I look forward to hearing what your private haematologist said 😘 xx

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in reply to Hidden

I’ll let you know what they say tomor and most importantly what my independent blood specialist think. I think take it!! It doesn’t cross the placenta and this cannot harm the baby but it ensures a free flow of blood which is key. 20 or 40 is fine, my only concern is my dose of 60 which for my weight (under 9 stone) is v high) and can cause serious bleeding for me if I go into early labour xxx

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in reply to Hidden

Oh dear it really is a job to know! I'm looking forward to hearing from you tomorrow but really hope they give you the answer you need to feel certain your doing the right thing 😘 xx

Lizzielizzielizzie
Lizzielizzielizzie
in reply to Hidden

Just to throw in to the mix, my midwife has told me to check with my consultant at 28 week check whether I will need to go on clexane from 28 weeks- my horrid varicose veins apparently push me up the risk factors. So there does appear to be some NHS protocol for using it during pregnancy, but it seems to be all about which boxes you tick!

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Still confused! Hospital haematologist said I don’t need to be taking any blood thinners at all but in light of my history they said I should drop to Clexane 40 and come off it all together at about 36 weeks of pregnancy. I told my independent specialist and she said because there is evidence of bleeding (nose bleeds and blood in urine) to drop to 40 for now xxx

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Oh dear, it's so difficult to get a straight answer bless you. I'm only on low dose injections so think I'll just continue to take mine. My hospital haematologist has the same opinion as yours but these injections are the only difference I've made with this pregnancy & I never got as far as 8 weeks before. I don't want to stop xx

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in reply to Hidden

Exactly! Don’t stop. Annoying not to have a clear answer but will reduce dose down for now and await results of my blood test today. I feel more comfortable taking 40 but I am a bit worried it’s not strong enough to do the job. Good luck with your pregnancy 😘xxx

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in reply to Hidden

Good luck with the rest of your pregnancy too Hun. Roll on December when our beautiful babies arrive! 😘 xx

To my mind they are not sure if this helps or not with blood clotting disorders to stop us miscarrying. That's why their doing trials. I'm sure you already know my story but I'm doing a trial called A life2 trial to see if injecting clexane every day throughout pregnancy helps to stop me miscarrying I have hereditary thrombophilia factor 2 and I'm on 40 a, day. Will be interesting to find out the results once the trial is over.

Xxx

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I thinkvas Clexane does no harm to the baby and keeps blood flowing then we may as well take it! What concerns me is the nhs saying to come off it at 36 weeks and my private haematologist said that’s the most crucial time and I should go up to 80 towards the end...nightmare!! Xxx

AllWeNeedIsluv
AllWeNeedIsluv
in reply to Hidden

Headache it is. I'd definitely stay on it if I was you going up does seem a bit much though especially if the dose your on isn't v causing problems. Xx

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