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4 miscarriages recommended immunology as next step - help!

9 replies

Eggley23 · 01/06/2023 20:33

Hiya,

Me and my DH have been TTC for over 5 years and we have experienced 3 natural miscarriages, 2 failed IVF cycles and one BFP after a FET which ended again in a miscarriage.

All reoccurring miscarriage tests have come back as normal, but have stage 4 endo & mild PCOS. Nothing else has been flagged.

We always miscarry at the exact same time and Care Fertility (our IVF clinic) recommended that we seek consultation at ARGC in London…

Does anyone have any experiences (the good, the bad, the ugly) with immunology and where did you go and what was your experience?

I’ve heard ARGC is a boot camp and we live down south so would involve temporary relocation. But really want to try and make an informed choice on if this is really the place for us.

Thank you!!

OP posts:
Janefx40 · 02/06/2023 18:33

@Eggley23 hiya. I'm so sorry for all you've been through.

I did a few rounds at ARGC. Personally I really liked it there. Yes it is intense but it was the first clinic where I felt I didn't need to be thinking or working out my own treatment needs because I trusted them to do it for me. Having said that, it ends up being super expensive because they do a lot more than other clinics - daily blood tests etc. They don't charge more than others for what they do but they do a lot more so you need to have very deep pockets.

I moved on after a while to another clinic and when there I did my immunology separately with Mr Shehata who runs CRP in Epsom. They are slightly more moderate in their approach than ARGC although you would need to do the IVF separately.

I'm just mentioning that because it may be more accessible for you location wise.

The other clinic that people go to for immunology is Dr Gorgy in central London.

There is a FB group called UK Reproductive Immunology - most people there are with Gorgy but it's a good place to ask questions.

Best of luck x

JLB234 · 04/06/2023 09:01

Would highly recommend Dr Thum at The Lister for investigations. Extremely personable, not pushy at all. We found I had high NK cells but only when pregnant. We had already been referred for NHS IVF due to low progesterone. He was more than happy to write us a letter with recommendations which we then passed on to our NHS consultant. However, I know The Lister is also highly successful in terms of IVF. If you have any questions, please feel free to send me a message! X

NV42 · 23/10/2023 07:44

@JLB234

I hope that you are doing well.

  1. May I ask if you have a baby now?
  2. Did you need to have IVIG and if yes, did you have it before or after the embryo transfer?
Feel free to message me privately. Whatever is best for you.

@Janefx40

  1. Would you know how ARGC treat high NK cells/Hashimoto hypothyrodism/thyroid antibodies?
  2. Did you have IVIG at ARGC and if yes, did you have it before or after the embryo transfer?

All

I have Hashimoto hypothyrodism, thyroid antibodies and high NK cells so I will need to have IVIG. I read that the best clinic for autoimmune issues is ARGC. What are your thoughts?

  1. Does it make a difference if someone who has autoimmune diseases and high NK cells is using fresh eggs or frozen eggs? I don't think it does but everyday I find out something new so I realised that there is no stupid question when it comes to IVF and overall in life.
  2. Has anyone got a baby following IVIG?
  3. Has anyone got a baby who had treatment with IVIG at ARGC?
  4. If you had IVIG did you have the first drip before or after the embryo transfer?

Thank you in advance 🙏

Groundhoghcg · 23/10/2023 08:57

Be careful with immunology. It's not yet a clear evidence base and is only done through a research umbrella. It's brutal treatment too.

Janefx40 · 23/10/2023 09:53

@NV42 I'm afraid I can't answer most of your questions really but there is an ARGC Facebook group. I suggest you join and ask your questions there. I'll PM you the link. If you haven't already then also join the UK Reproductive Immunology FB group as those women are very knowledgeable.

I did have IVIG at ARGC on one round. I think it was before transfer but can't quite remember. I didn't have IVIG on my successful rounds. I had Humira, steroids, intralipids all through Mr Shehata. He doesn't do IVIG. It was always expensive but it has become even more so from what I understand.

Yes it's true that there isn't much of an evidence base for reproductive immunology. The NHS treated is under a research umbrella but not the private (if you mean it's part of a research trial).

I was skeptical for years until I had a failed euploid embryo. That made me reconsider. I'll never know if that was what made the difference but my second and final euploid embryo worked with immunology treatment so I am grateful for it

X

Blueskies4 · 05/11/2023 22:00

Hi ladies

Thanks for the info… I’m currently looking into this too as I have Hashimoto’s and hypothyroidism and have had recurrent miscarriage.

I’m currently having Accupuncture and my Acupuncturist recommended doctor Thum so it’s good to see his name mentioned in here too :)

NV42 · 10/11/2023 11:29

@Janefx40 Thank you so much for all this useful information. Following your post I joined the ARGC Support Group and found the UK Reproductive Immunology Support which have been a life saver.

May I ask what was the dosage of the steroids, humira and intralipids you were taking? Did you have to start them before ET? I will speak with Dr. Thum pending outcome of this ET and I want to ask him about the more advance immune protocols Dr. Gorgy and Dr. Shehata seem to prescribe.

Janefx40 · 10/11/2023 11:50

@NV42 Glad it was helpful. I wouldn't expect Dr Thum to be positive about Gorgy and Shehata tbh. It's a disputed area of medicine and each doctor believes in their own approach! Mr Gorgy is more extreme and does LIT and IVIG whereas Shehata doesn't.

I did Humira in advance. You have 2 injections two weeks apart then two weeks later test. If things have improved you can then start FET (mine had). If not then you repeat. It's eye wateringly expensive but Me Shehata uses a cheaper brand if you can collect it in person.

I was on aspirin (75mg) and various supplements pre conception.

I had intralipids and Fragmin (daily) from 7-10 days before transfer.

5 days before transfer I started Omeprazole and 25mg Pred.

Then at positive pregnancy test you carry on with everything plus progesterone (probably have already anyway on a FET) and have another intralipids.

But bear in mind that was my protocol based on my tests. There were other meds and other doses he could prescribe if my needs had been different x.

NV42 · 10/11/2023 11:56

@Janefx40 Of course.. Every prescription I would hope is per the individual needs. Thank you so much for this information.

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