9th loss - falling apart : Can anyone... - Fertility Network UK

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9th loss - falling apart

Steadman80 profile image
21 Replies

Can anyone recommend via private message a recurrent miscarriage specialist?. I did see a specialist in Coventry a few years ago but I’m a few years down the line in the same situation. He bet me £50 I would have a baby and told me not to worry! I’m literally falling apart. Just had my 9th loss which was an ectopic and had my right tube removed. I seem to fall pregnant quite easily but ends in the early miscarriage, only ever seen a baby on a scan on one of my pregnancies which ended in a missed miscarriage. The only thing they can find wrong with me is slightly raised NK cells (to have steroids) and a low AMH. My own fertility doctor said donor eggs 4 years ago. I’m almost certain there is something else wrong. Whenever I lose the pregnancy I always come out in a rash on my tummy which I think has some kind of connection and more recently cold sores. If anyone has any advice or can help point me in the right direction I would be most grateful.

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Steadman80
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21 Replies

I'm so sorry for your losses Hun. I didn't actually see her as the reason behind my losses was easily identified but my Dr in Athens who worked for many years in London recommended a Dr Regan to me. I think she may have been based at Hammersmith Hospital but am not 100% sure on that. Wishing you lots of luck. xx

Steadman80 profile image
Steadman80 in reply to

Many thanks - I’ll do a bit of research x

Zebedee1971 profile image
Zebedee1971

Just wondering who you saw for nk cell treatment? I see a lot of women on here being treatment for nk cells with no success, however, I'm under the care of doctor hassan Shehata at the crp clinic in epsom (he is a miscarriage specialist). He's dedicated his life to this and has a huge success rate. I am currently 13 weeks pregnant (I always miscarried or had chemicals before 7 weeks). Whenever I go in for my intralipids, I always meet women who've finally gotten pregnant after 3, 4 sometimes 5+years of trying... I trust him completely and he's the only reason I got pregnant, I'm certain of that.

My protocol was as follows:

One injection of humira to calm the nk cells (I was supposed to have 2 but had an allergic reaction to the dose, luckily one was enough), hydroxychloroquine once a day, omeprazole in the morning, predisolone (25mg) at lunch, cyclogest (x2) at night, intralipids every 4 weeks when pregnant, and aspirin before bed.

You mentioned steroids? But did you take anything else??

I'm no expert but I fell naturally (twice in 2 months) after having humira, Hydroxy and intralipids in my system. For me, I felt that the steroids helped to keep the pregnancy, but it was the humira and intralipids that created a less hostile environment for the embryo to implant in the first place.

I'd be interested to know exactly what treatment you've had for the nk cells, it could be that you just haven't been treated properly and need more than what has been offered to you? I'm happy to answer any questions you have via DM if you want to know more xx

Steadman80 profile image
Steadman80 in reply to Zebedee1971

Many thanks for your reply, I really do appreciate it. It’s made me emotional. Thank you and congratulations.It was prof brosens in Coventry who works with prof quenby. The NK cells were only slightly raised. They said prednisolone 20mg once a day until 10 weeks then to wean off and some progesterone suppositories twice a day. They said no aspirin until 7 weeks.

I’ll DM you some questions. Thank you so much xx

Zebedee1971 profile image
Zebedee1971 in reply to Steadman80

Interesting. I've been on aspirin since February. Quenby is supposed to be as good as Shehata... Mine are also only slightly raised but I'm on loads of drugs. I'm surprised you've not had intralipids?

Steadman80 profile image
Steadman80 in reply to Zebedee1971

No-one has ever suggested intralipids to me. I don’t know if it’s because I’m under an NHS consultant. I was on letrozole this cycle which has worked for me everytime I’ve taken it. I’m reluctant to take it again until I have a better plan in place. I don’t even know if I can take it again now after having an ectopic. I read about the hydroxy and was going to ask for it but I doubt he’ll give it me. I might have to go private. I’m in the north west though but I will maybe ask your specialist to write me a treatment plan and try and organise intralipids near to me. So they said strictly no aspirin as it may have affected implantation but if I wanted to take it to do so after 7 weeks xx

Zebedee1971 profile image
Zebedee1971 in reply to Steadman80

You can get all of the meds I've mentioned through a specialist. They can then do you a treatment plan and then you can do ivf in sync, but the nk cell treatments are managed by yourself separately... However, from your last post it seems you have more luck naturally??? This is similar to me. I've actually had terrible ivf cycles, all of my pregnancies have been natural, the meds were what I needed to get the pregnancy to stick. I hated ivf, it just didn't agree with me, and I now think - did I need ivf if I can get pregnant naturally??

Most private clinics do intralipids now, but I'd definitely enquire at your nhs clinic if you're happy with them. You never know.

That's a weird thing to say about the aspirin. I guess they know your history so maybe there's a reason why they'd say that, but aspirin is generally considered very safe and a really good simple fertility treatment.?

Steadman80 profile image
Steadman80 in reply to Zebedee1971

Two failed IVF, first one ended in missed miscarriage at 10 weeks second one didn’t take. Poor response to max stims. Other 8 pregnancies were all natural xx

Zebedee1971 profile image
Zebedee1971 in reply to Steadman80

See I think if they're mostly natural conceptions, it's definitely not a chromosomal issue. You CAN get pregnant, you just need the right meds, or combination of meds. Once you get that in order, you'll have a much better chance of keeping a pregnancy. Good luck with Shehata. 🤞👍

in reply to Zebedee1971

I was told differently to that, I’ve had 7 losses and 6 of them natural - I’ve been told it’s likely chromosomal and old eggs ....

Zebedee1971 profile image
Zebedee1971 in reply to

I got told the same... Its what all consultants say, but sometimes there are other issues at play (could be a combination of a few things -- a lot has to go right for a pregnancy to happen). Then I got treated for nk cells and I got pregnant really easily. So it wasn't chromosomal for me. And I'm 39.

Np7776 profile image
Np7776 in reply to Zebedee1971

Hi Zebedee1971 - we live in US and are going through somewhat similar with my wife and the doctors give the same recorded answer. It may not be possible for us to get consultation with Dr Hassan so could you please tell me all the tests that the Dr performed for you before deciding on putting you on the meds that he did ?

Zebedee1971 profile image
Zebedee1971 in reply to Np7776

The tests he does involve taking the blood and putting it onto a pregnancy type state. He then sees how the white blood cells react, and introduces the drugs to see if they calm the nk cells down... If his tests work, he usually prescribes humira (an injection to calm nk cells) then either/ or both : hydroxychloroquine /predisolone steroids. Then in addition, intralipid infusions every 4 weeks when pregnant.

You can get some tests done through your doctor : ANA panel, Thromophilia screen, lupus inhibitor, nk cell count (and one other, I can't remember) then you could book an online consultation with him over zoom, and he'd be able to use your results to see if this is what it is... There will be consultants in the US who specialise in recurrent miscarriages. You need someone who is an immunologist.

Good luck x

Np7776 profile image
Np7776 in reply to Zebedee1971

thank you !

Arlie123 profile image
Arlie123

So sorry to hear about your losses. Sending lots of hugs. I don’t know if this blog is helpful or not about someone who had treatment for natural killer cells after recurrent miscarriages. She got pregnant so some of the other blog entries are about her baby so apologies in advance if any of that is triggering xxx

bumpsandburpees.com/news/20...

Arlie123 profile image
Arlie123 in reply to Arlie123

Just to say she didn’t have a raised number of nk cells but the cells she did have were more active x

Steadman80 profile image
Steadman80

Thank you so much xx

Serendipitious profile image
Serendipitious

Have you had your thyroid checked? I’d recommend testing the following:

TSH, FT4, FT3, TPOAb, TgAb

I’d also recommend reading up on these articles. According to Dr Izabella Wentz, known as The Thyroid Pharmacist, your TSH should be no more than 2.

These two articles by her are about the thyroid and pregnancy and are invaluable:

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

Dana Trentini

She miscarried due to undiagnosed hypothyroidism and now is a campaigner:

hypothyroidmom.com/about-da...

Hey you have had a lot of great information on tests etc from people on here. I just wanted to say you aren’t alone. I’ve lost 7 pregnancies and the furthest I have got to is 9 1/2 weeks which was my most successful IVF. I’ve tested positive for sticky blood etc and had my womb restructured etc to give myself the best chance,. And all my consultants have said ‘come back to show me your baby’.. only I’ve never had that baby and I’ve now been told it must be age related (I am 43) and I should go with donor eggs

I just wanted to say I cling to the hope that someone will give me a test or a reason why I’ve had so many losses.. and why everyone else seems to have that happy ending and I don’t - but so far no one has given me that and I haven’t been that happy ending

I’d love to hear from you if you do find that magic fix so do keep me updated if you do find anything. I so wish you do and you also get your happy ending - most other people seem to so I see no reason why you won’t be one of them too xx

Steadman80 profile image
Steadman80 in reply to

Ah thank you daisy. I’m sorry to hear about your time too, it’s horrible that we have to go through this. I’ve just turned 40, my consultant has been telling me since 35 to go with DE because of my AMH. Think it was 3.2 when I last had it done. They literally can’t find anything wrong with me apart from the low AMH and slightly raised NK cells. I’m going to give the recommended clinic a try I’m quite keen to try intralipids. I’m sure my system gets attacked when I get pregnant. I hope we both get our happy ending, like you I see it happen all the time too. I will let you know how I get on and share anything I can to help you and others xx

Peanutpie1 profile image
Peanutpie1

hiya I know this post is old but did you ever figure out the problem? My story sounds similar to yours with the losses, NK cells raised and low AMH and am at a bit of a loss now. I’m on pred and Intralipids and heparin/aspirin already. Thank you xx hope you are ok

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