Recommend your Lister (or other) consultant

[thislittlebird]

Just pondering whether to switch consultant or switch clinic if we need another retrieval. I’m currently at the Lister and would like to know if you are also with them, would your recommend your consultant? If so, why? Or would you recommend another consultant at another clinic if you are not with them?

Not convinced my current consultant who shall remain nameless has listened to me, so looking to hear about good experiences others have had.

For context, this is a very complicated case with a lot of failed transfers to date, possibly due to immune issues with both of us.

TIA

Hey @thislittlebird I'm at the lister too. My consultant is Dr Bora, she's been great so far. I had my NK cells tested because I've had 1 mmc and 2 chemical pregnancies (all natural), I have always suspected that my immune system is being overly reactive, I have asthma and also I never ever get colds/flu's. My results came back as elevated and my consultant liaised with Dr Thum who is the immune guy I think, he's written some papers on nk cells. They have me on clexane, pred and intralipids. I can't say whether it's been a success yet, I'm very early days with a pgta tested embryo and saw a heartbeat this morning but there's a long way to go. Im not sure if any of that will help you make a decision, I think like you said it's also about your case history... but I would imagine Dr Thum is the person to go with for knowledge on immune stuff. Is there particular specialist knowledge you're looking for?

Also, the other thing I was looking into re nk cells was the Coventry/Warwick implantation clinic, I think prof quenby runs it. They have a different way of testing nk cells activity through endometrial biopsy, which also acts as an endometrial scratch. I think the consultation plus biopsy plus measurements on your lining costs around £750. Their theory is that measuring endometrial nk cells is different to a blood test. I think their treatment plan is slightly different too, not sure if they use prednisolone or something called stiglapin?

That’s interesting @browneyedgirl626.

My husband commented how I don’t seem to get colds, I’ve never had flu and I’ve never had covid. I have asthma, eczema, sinusitis, blepharitis and the only time I’ve achieved implantation was when I was taking prednisolone (self medicating).

We know now we won’t conceive naturally and credit to Lister they’ve helped us to learn more about what’s going on with my husband’s sperm (immune also, antisperm antibodies) but that means icsi working is really crucial because it’s our only chance.

I’ve not heard of Dr Bora. Is he at the Chelsea clinic? Is he empathetic? I told my consultant there about all my immune issues when we first met him in October, and my only ever implantation on prednisolone (only 1/6 embryos has implanted for me) but he dismissed it and then got me to do NK cell test which came back normal range and said I didn’t need it. So I trusted him. I also told him I was l planning to meet Mr Thum and he said something like “I doubt he can tell you much more than I can”, so I didn’t do it before this cycle.

Did my third retrieval, without pred, transferred what I believe was a very good 5AA embryo and I think it attempted to implant but my body rejected it. I had a big immune response on days 4 and 5 past transfer. My eczema hugely flared up one day and the next was a migraine, fatigue, flushed face, hot, it was like I was fighting something off. I started bleeding by 7dpt.

I’m considering meeting Mr Thum, but I’m honestly very angry my doctor told me that I didn’t need pred and I feel like he’s wasted my best embryo. It wasn’t PGT-A tested, but it’s besides the point, he didn’t listen to me and I think I was proven right.

So yeah, I’m not happy with him, I know I need my immune system dampened down a bit and not sure whether to persevere or up sticks and go elsewhere. I think I need to change consultant either way, I have one or two transfers to do with them yet.

Sorry, just realised you said Dr Bora is a she!

@thislittlebird I'm sorry you weren't listened to, for the money we pay that shouldn't be the case.

I would 100% speak to Dr Thum. I like Dr Bora but I don't think she specializes in immunes and I was actually really pleased that she consulted Dr Thum when my nk results came back as I didn't ask her to. I don't think every consultant signs up to the nk cells theory, but you sound like you have autoimmune stuff going on and I'm surprised that wasn't taken into account. Sounds like you had a big flare up after transfer too.

It's a shame your nk cells results didn't come back elevated, very weird. Were you on any medication at the time? Asthma pumps? Anything that would skew your results?

@browneyedgirl626 I’m booking in with my consultant for mid May, and then I think I’ll see Mr Thum in June. Not sure when we will transfer next, I want to lose some weight first because being on prednisolone won’t agree with me. I had to take it for a major eczema issue in spring 2021 and I never lost the moonface.

Were your Nk results high? Mine were normal, and I am on various inhalers so I don’t know if that can impact it, but either way I’ve always felt like my immune system will be my issue and it’s taken a long time to get to a stage where I now feel I have to tell them I need to try pred. I suspect they thought the whole problem was my husband and not me, or my age was the issue. Can I ask what immune treatment they gave you?

Yeah day 4 after transfer my eczema went hot and itchy all over suddenly, and day 5 was migraine, fatigue, flushed face and I really do believe my body fought that embryo off.

@thislittlebird my nk results were 31%, I think anything over 20% is considered elevated. I'm on 25mg pred daily, clexane and intralipids, one on day of ET, one today at 7 weeks and if all goes well a third one in a month.

I hope they listen to you, prednisolone is really not a big deal considering you sometimes get it prescribed for asthma issues. I think you might need intralipids along with it though according to my little handout from the Lister

@thislittlebird I meant that prescribing pred shouldn't be a big thing for the clinic, not that it's not a big deal for you! I've yet to see the moon face, I'm sure it will come though!

@browneyedgirl626 the issue is, I’ve read research saying intralipids shouldn’t be given to people with high cholesterol. I’ve had it (for unknown reasons) since my mid 20s or possibly earlier. I mentioned this research I’d seen to my doctor and he just made a weird face. I’m kind of annoyed that they will want me to take 25mg too, I know I’ll have an awful time on that dose. So I’m hoping they’ll compromise and drop the intralipids entirely and also the dosage to something I’m more comfortable with like 15mg. My NK cells were 16% so not super high, I think that justifies me asking for a lower dose?

The moon face only happens for me when I’m on it for an extended period (3 months would be a nightmare for my face) and I’d really like to avoid some of that, I’ve never shifted it fully. On the plus side literally everyone else I’ve ever known to have it has seen their face go back to normal size after treatment ends.

I’m already on clexane, so at least that’s a non issue.

@thislittlebird it sounds tricky to get the balance right. Have you thought about hydroxychloroquine as an alternative? It's pretty well tolerated apart from some people reporting hair loss 🥴

I didn't know about intralipids and high cholesterol. I've just gone along with the consultant on what they suggested. The embryo was pgta tested also so maybe that's why it successfully implanted, who knows. Are you doing pgta too?