Immune issues - experiences and advice?

[ZippyBopit]

Hi,
I'm looking into immune issues as a cause or part cause of my unexplained infertility. Does anyone have any advice?

It's a bit of a minefield tbh, I don't know what tests are carried out and what the results would mean. I've read that 'level 1' tests I am entitled to on the nhs but 'level 2' I have to pay for? Do I just go to my GP and ask for level 1 immune tests?? Will they know what I'm talking about? Or just book a consultation at a clinic and take it from there?

I'm looking into clinics at the moment. There seem to be none in Scotland (where I am). Does anyone recommend a particular clinic? I think many medical professionals are cynical about the merits of immune related infertility research which makes me worry it's a waste of energy, hope and money. At the same time I'm sure there was cynicism about ivf when it was all new and shiny...

Keeping an open mind and comments and advice welcome x

Private clinics provide the immune tests. Not all do as you have found.
Not all gp's will fund all of the level 1 tests - mine tried but for two of them the lab testing required a haematology referral so we paid for them along with the level 2 tests. All gp services vary. However if you do not have a clinic that will offer immune protocols then it may be worth finding a clinic that will first to ask them what tests they suggest? And to interpret the results and prescribe the treatments alongside the ivf if necessary?

Manchester Care do Immune treatments but probably too far south for you. Mr Patel is based there. Lots more choice London area, not sure of any in Scotland, as not based there myself so never researched it.

Oh and my gp had never heard if them - I printed out lots for him to read and a typed list of what I wanted!! Sadly he has left and the other gp I saw refused any NHS testing or referrals for us as we have one child.

We had to have IVF at a private clinic as we already had a child and weren't entitled to NHS funding. After 4 years of unexplained issues, I moved to a clinic which specialised in immune issues - the ARGC in London (although there are others such as Dr Gorgy also in London - sorry I don't know any in Scotland either). They do blood tests called a Chicago test which highlights immune issues. In my case they treated me with a combination of steroids (prednisolone), intrallipids and humira. I believe there hasn't been a large scale research study on the benefits of immune treatment which is why some GPs are cynical, however the results of clinics such as the ARGC speak for themselves. After 4 years of nothing they managed to get me pregnant and my little miracle is now 14 weeks and sleeping upstairs! I wish you all the best of luck, I would definitely recommend getting a consultation with a clinic that specialises in this issue x

Thank you both so much for your advice.

Silverstars I think you're right, I should make an appointment at a clinic first. I think it would be very easy for my GP to refuse to do any tests when I don't really know what I'm talking about! At least a clinic can advise what I might be able to get done on the NHS and give me a list. That is really frustrating your GP left, I don't think just because you have a child already that you should be refused further tests and investigations! That's shocking. I hope you manage to get there, best of luck to you x

Dannygirl an amazing story, huge congratulations and thank you for sharing! The immune treatment makes a lot of sense to me in some scenarios. When someone either has a child or a miscarriage and then has a long period of unexplained infertility (I had a miscarriage at the very beginning of ttc many moons ago). It's as if the body does something wonky and prevents any further pregnancy. I'll look into which clinic is easier to travel to (which may be London) and make an appointment. Thanks both for the recommendations xx

Hiya, I work as an acupuncturist along with women planning or going through IVF. GP has no understanding or awareness of the immunology tests mentioned. The Chicago tests are unknown or aware within Nh medics unless they are involved in IVF. So, do not get frustrated. Important is approach the right person to minimise stress and money well spend when making further decision. Dr Gorgy runs a clinic up north. Zita west clinic, new life Epsom offer the Chicago tests. Best of luck

Just to echo Dannygirl's post we went through two fresh icsi-ivf cycles and two frozen cycles at one clinic and I wasn't satisfied with the answers that I'd been given on my failures - basically that they didn't understand why and thought I should get pregnant through repeating the basic process at some point.

I'd been researching (and fertility friends forum was brilliant in many ways at this time) and felt immune issues could be the key. I moved to ARGC where they did the Chicago tests and I was found to have elevated levels of NK & TNF alpha. I had a course of humira and had to have ivig whilst I was down regulating. Besides the immune aspects ARGC also try to make sure every other aspect is fine tuned to you as well. Despite having very poor embryos put back (which is our biological fault, not the clinics) I can now currently hear my 10 month old twins breathing heavily through the monitor.
Wishing you all the best.

Just wanted to say a quick thank you for the comments. Splitbanana thank you for the recommendations. I'm dithering at the moment, lots to think about. Mothersruin what a lovely story! It's so hard to go through a cycle and meet a failure at the other side. I really admire your perseverance to keep trying and to find the missing piece of the puzzle that made it finally work for you. Just fab

I second Dr. Gorgy. He offers treatment even the ARGC doesn't (LIT). I had lit, humira, ivig, steroids, clexane. The works. DS is 2 now.