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  • "fluffy" started this thread
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Sunday, February 20th 2011, 7:05pm

Should I have the immune tests now?

Hi immunology experts!

DH and I been ttc for 2 years and were diagnosed 'unexplained'. I have had symptoms of implantation failures and/or very early miscarriage. My nhs fertility doc prescribed Cyclogest progesterone and 75mg Asprin because of this. All along I've had a feeling that I've got a problem with immunology. I suffered from ME/CFS when I was younger (and always have to be careful not to provoke relapses), I have asthma also. Both of these are auto-immune disorders. Is there anyone else on here who has had ME?

Anyway, I had a telephone consult with Dr Gorgy (who I believe to be the best immune doc?) in Jan and have booked us in to have the bloods taken for immune testing in 2 weeks time.



But in the past 2 weeks my DH had another SA which gave a very poor motility result (21%) although the test he had a year ago gave him a high (80%) result. Getting him retested but if the result is the same that maybe this explains it all and no need to explore immunology?

Am hoping to get my AMH result next week (which I was asked to test as I had one FSH result at 10.9 and another at 4.85 but with a very high E2 level). If my AMH result is low then should I not bother with the immune testing?

Another thing is that I see on FZ lots of you talk about Level 1 tests. Anyway, I went to my GP to ask for these tests but he said that the nhs wouldn't fund them. Would it be advisable to miss the Level 1 tests and jump straight to the Level 2 (I believe that's what you call the full immune tests?).



I know some of you may say to wait for the immune tests but I feel we are running out of time (I've just turned 36 and would hopefully like 2 if able to). Plus we've had to book and pay for flights to get to London for the testing (we live in Italy at the mo).

I would like to just have the tests to reassure me.... but it is a very expensive thing! Would it be better to save the money for IVF/ICSI?

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
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Sunday, February 20th 2011, 7:21pm

Hi hun

I am no expert but it is best to get all the facts so that you can move forward with the right protocol for you....I have recently had immune testing after repeat implantation failures and they showed slight elevations in NK cells but nothing major..you need to do what you think is right..you know your own body...best of luck Hun xxxx
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Sunday, February 20th 2011, 7:43pm

Hi,

With my experience of immune testing, I would definitely say go ahead with it. But that is just my opinion. Life is short, and if it DOES turn out you may have an issue, wouldn't you rather know?

I have heard of Dr G, hope you get some answers soon

xx





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Sunday, February 20th 2011, 8:47pm

It's a very very difficult one to answer.

Sperm results can vary dramatically from sample to sample, which is why most docs want 3 consecutive samples before making a diagnosis. However, if your DH's sample consistently had low motility then that would suggest a problem that might require ICSI to resolve it. You haven't said whether you're having IVF but I'm guessing not. If you're TTC naturally and have had early m/cs then that suggests that the sperm isn't a major issue as conception is occurring.

It's certainly worth knowing what your AMH is, but I would take that with a pinch of salt. The only really use of AMH, that I can see, is that response to IVF drugs corresponds well to AMH, so it can help the docs decide what drugs to give. Other than that I think it is pointless. It doesn't affect what doctors do, so why test it? I know ladies with v low AMH who conceive at the drop of a hat. It tells you about ovarian reserve, NOT about egg quality. There will be a correlation with low AMH and poor egg quality, purely because egg quality declines as we age, and AMH drops as we age too, but having low AMH doesn't mean that your eggs are worse than others. So, if your AMH comes back as low, all it would say to me is that you don't want to delay with TTC, but seeing as you're actively TTC at the minute, that isn't an issue.

The immune tests are worth doing I think, especially as you have a history of auto immune disease. BUT, don't get them done for reassurance. At ARGC they told me that 80% of the women they do immune tests on have an abnormal result. Obv, they are testing women with multiple m/c or IVF failure, so they are expecting to get a lot of probs, but 80% is exceptionally high. They don't know how significant this is, as these tests aren't done in women with no issues, so it's impossible for anyone to know whether these problems are truly significant or not.

There are plenty of ladies on here who have had multiple m/c or cycle failures and then succeeded with immune tx. However, there are also plenty who have had multiple BFNs with immune tx (myself included) and those who have had immune issues diagnosed, then gone on to have cycles with no immune tx and had successful pregnancies. So the jury is still out.

The Level 1 tests are usually done on the NHS, but only if you've had 3 m/c. In some cases they are done earlier (I had them done after 2), but it depends on your doctor. The Level 2 tests are always done by private clinics, and Dr Gorgy will certainly do them. He will be able to do the Level 1 tests for you also if you haven't had them done.

I would get the immune tests done myself, that's what I did, and I haven't ever regretted it, but no one can tell you whether that is why you aren't conceiving, and chances are the tests will come back abnormal, so if you do have them done you have to be prepared for potentially expensive treatments that aren't currently proven to be beneficial. It will mean you've covered every base though.

Good luck,

xxx

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Sunday, February 20th 2011, 9:18pm

I aso have ashtma and endo.

I got tested and am now 33 weeks pregnant on my first immune cycle. I had no issues with Level 1 but level 2 showed DQ Alpha match and NK cells.

My cousin who does not need IVF went to Gorgy and had level 1 and 2 and is now 11 weeks pregnant after 6 losses.

If you have the cash, I would not think twice. The sperm count issue will not have caused the losses.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
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Monday, February 21st 2011, 7:11am

Hi fluffy, it is difficult.

Ruthie has explained really well.

Sperm can vary. If your DH had the flu or another infection then that would have affected the results, so maybe you want him to take vitamins wait 3 months and re do the tests.

As for you, I would have the tests done. I have VERY low amh, and hormones that are all over the place, but I still went for the tests, which showed a lot really. Now I am planning to go for a cycle with my own eggs after the immunology treatments. However I know that these things are not 'proven' and it's all a bit experimental.

The ultimate decision is up to you, but as yo have had all those problems and have some immune issues already it seems silly not to have them done.

Good luck with your decision xfingers

  • "fluffy" started this thread
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Sunday, February 27th 2011, 9:14pm

Hi ladies,

Many thanks for your replies, they really helped. I've been thinking about the immune tests over the last week and have decided to definately have them done. We had already booked the flights to get there anyway (and DH had booked time off work so would have been mad if I'd said I didn't want them now!) - but that's not the reason - I'm feeling much more positive now that I need to get the tests done. I've been suspecting immune issues for the past year and half and need the answers now. I'm sure that the results will highlight problems but feel positive about the treatments which Dr Gorgy can prescribe. I've spent endless hours researching immunology on the net and reading FZ posts - all your posts have been very helpful and informative. Ruthie - you should write a book on the issue or write in to press to highlight it as you are so informative and write so well.

Amazingly, my DH's latest SA showed that his sperm motility was normal and fine so maybe an error had been made at the hospital with the previous test. The previous result had really thrown me anyway as I never thought we had a problem actually conceiving (because of suspecting implantation failure).

My AMH result was really bad - low fertility 8.4 which I know means low ovarian reserve / old ovaries! I was absolutely devistated when I got the result and have spent days crying and being emotional. I'm trying to get over that now (I see what you said Ruthie about this) and move on but it's really hard.

We are starting IVF now (at a clinic in Italy) - hopefully starting next month.

So we will have the immune tests next Monday at Dr Gorgy's clinic in London and should get the results after 10 days..........

Finally, a question - do any of you have problems with spotting afew days before AF? I get this and wonder if it's a sign of immune issue.

xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
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Sunday, February 27th 2011, 9:33pm

Good luick! If you are in Italy and speak Italian check the :FZ: equivalent there. It's called Cerco un bimbo, CUB for short:
http://www.cercounbimbo.net/

Don't get too worried about your amh, mine is 0.8!

I have immune issues and spotting a few days (1 or 2 days) but not always. Sometimes is to do with progesterone. I think it's quite normal though so don't worry. xfingers

  • "fluffy" started this thread
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Monday, February 28th 2011, 10:18am

Thanks Maria.

Unfortunately, I don't have very much Italian so can't really follow their website. Thanks though.

xxx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
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  • "fluffy" started this thread
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Wednesday, March 2nd 2011, 11:27am

Hi ladies,

Another quick question.... Do any of you know if there is a problem with taking 75mg's Aspirin before having the immune tests (level I & II)?? Have been taking the aspirin for months now and wonder if I should stop taking for afew days before bloods taken on Monday??

Thanks xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
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Wednesday, March 2nd 2011, 11:54am

The aspirin won't make a difference to the vast majority of the tests. It may slightly affect your clotting times, and seeing as you're paying loads for the tests it may be worth stopping the aspirin for a few days. I would also mention to them what dose you have been taking and when you stopped it. I don't think it will make a significant difference though so I wouldn't worry about it.

BTW. be prepared for massive blood loss on Monday! I think they took something like 17 tubes from me the first time. It's definitely worth having breakfast before you go, and then going for a little sit down afterwards.

xxx

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Wednesday, March 2nd 2011, 1:10pm

Fluffy - Are you having both Level 1's and 2's done on Monday?
Do you mind me asking how much these cost you?
PM me if thats better :smile:

[zx127]
Lots of heartbreaking history incl 2 losses :-(

April 12 - IVF - :BFP:

Sept/Oct 18 - ICSI

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Monday, March 7th 2011, 12:35am

Fluffy

ditto Amyeliz87 - would you mind sharing info about how much with me too?

fingers crossed that it provides some answers

Gail
G
:xxx3:

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Monday, March 7th 2011, 4:24pm

Hope all went well today. :D

Don't sweat the AMH level, mine was only 9.25 a couple of years ago and I've managed good stats on conception through IVF. As for the spotting before AF, I get this too and it wasn't associated with immune issues when I spoke to my conusltant. Apparently its very normal to spot for a few days before and after.

xxxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

  • "fluffy" started this thread
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Friday, March 11th 2011, 8:14pm

Hi, sorry it's taken me afew days to update you all...

We had the bloods taken on Monday and all went well. We met Dr Gorgy for the first time aswell (my initial consultation with him was by telephone) and he was ok and the clinic is nice.

You go to another clinic afew doors along (Wimpole Str) for the blood tests. I had 12 tubes taken (!) and DH had 5 taken (and he nearly fainted!!).

Ruthie - thanks for the advise about the amount of blood taken (luckily mine was only 12 though!). We had taken some chocolate, bananas and water with us and needed a sit down afterwards (but they have nice comfy sofas in the waiting room!).

We had all the immune tests/full Chicago's done which cost £1370.

Dr Gorgy also does infection testing which cost extra and a clamydia test using menstrual blood (!?) which costs £200 but we decided not to have these.

The bloods get sent to Dr Beers lab in Chicago and results should be posted to us by end of next week.

I have a phone follow-up consultation with Gorgy on Mon 21st.

I am very much expecting there to be issues with the results and expecting to need treatment. I really hope that I can get the prescriptions and the drugs in time before starting my IVF cycle (should be starting around 28th/29th March). Do any of you know where I can get the drugs (can they be ordered from any pharmacy??). If I need the intralipids or ivig then where do I get these from, how much do they usually cost and where and who administers them? Bit worried about this as I know that I won't be able to get the intralipids here in Italy (they are only available for use here on premature babies) and I don't know a nurse who can administer them........

I had afew of the Level 1 tests done in blood tests taken for my initial IVF. Most of the results have come back as normal, apart from what seems to be blood clotting issues. I haven't spoken to a doctor about this yet but wondered if any of you could shed some light on this?.....

Fibrinogen - 444mg/dl (should be 200 - 400)

aPTT - 23 sec (should be 25 - 35)

aPTT ratio - 0.83 (should be 0.84 - 1.16)



xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
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Friday, March 11th 2011, 8:43pm

Didn't want to read and run, but Ruthie, as always has answered very well! I agree with everything she has said and think she is one very wise lady. I have thyroid problems (hashimotos) which indicates immune issues, so I went to Dr Gorgy for testing, but due to various reasons - one major one being that we are living abroad just now and our IVF clinic didn't support the whole immune thing - we had our 4th cycle without immune drugs and i'm now just over 16 weeks pregnant. I had high NK cell killing power (30%) and antibodies to progesterone show up on my tests. Like you I also have low AMH as well and I suppose we'll never know what clicked it all in place this time compared to others, but I don't regret for a minute having the tests done. It has helped keep me very informed and more aware of my own body. I would say you are right to go with what you feel is right for you - you don't want to look back and regret having not done something or some tests. Wishing you the best of everything xxx

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Saturday, March 12th 2011, 2:44pm

Thanks Amazing Grace. Congratulations on your news. :happy:

Do you mind me asking which country you live in? Were you not able to get the immune drugs there? Did your ivf clinic refuse you treatment alongside the immune drugs?

My ivf doctor here didn't really want to discuss immunology very much further with me. I'm considering not telling them about having the immune treatment (if I need it). Or telling them and if they say don't take it, then taking it anyway. Has anyone else had this experience? For those of you who have ivf in a different clinic to your immune treatment, what do you do?

Does anyone have any advise about my questions in my previous thread? :S

xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
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Saturday, March 12th 2011, 2:51pm

I fluffy A lot of clinics are against immune tx cos it hasn't been properly trialled like the standard IVF protocol. Especially NHS clinics are not allowed to offer untrialled treatment. I would tell the clinic all the same. It's better they know what you are taking/doing.

ruthie

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Saturday, March 12th 2011, 4:27pm

Hi Fluffy,
I'm glad you're still standing after the blood letting!
I agree with Maria, make sure your clinic know what you're taking. They prob won't mind. My clinic near home are fine with what ARGC have prescribed me, but they do need to know. Most of the drugs will be easy to get, steroids, clexane etc.
However Humira might be harder. It is prob available in Italy as it's a rheumatoid arthritis drug, but if it isn't you might have to get that posted to you. Intralipids and IVIG are harder, as even if you get them, you need a nurse to administer. In the UK there are a couple of companies that supply nurses to come to the house and do the intralipids.

It might be worth messaging Erkani. She lives in Italy and had an immune cycle, and I'm pretty sure she used ILs. She doesn't come on here much now but I can contact her and tell her to look out for a message from you.

xxxx

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Saturday, March 12th 2011, 6:05pm

Thanks Ruthie and Maria - you are right - I will tell the clinic if I'm taking any immune tx.



Ruthie - thanks. I will send a message now to Erkani. Thanks for contacting her for me.

Do you know anything about the test results which I had for Fibrinogen and APTT and APTT ratio (results on earlier post). I already take 75mg aspirin a day but it looks to me that I'm still having blood clotting problems even so. Would you think I will get prescribed Clexane?



xxxx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
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ruthie

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Saturday, March 12th 2011, 6:16pm

Re the fibrinogen, I don't know huge amounts about it in context of fertility. High fibrinogen levels though, would suggest increased clotting activity. Normally we are worried about low fibrinogen levels in patients with bleeding problems, but high levels would certainly suggest you may clot too well!
The aPTT is a little short, ie you clot quicker than normal. Aspirin won't affect this as aspirin reduces platelet coagulation. Without getting too technical, the aPTT assesses the intrinsic and extrinsic clotting pathways, which come into play after platelet aggregation, and therefore after aspirin has done its job. So the aspirin you were on won't affect that result. Heparin will affect this part of clotting though, so I would think they will definitely give you clexane.

Hope that makes sense, if it doesn't I can do a proper clotting explanation but it's very very complicated!

xxx

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Tuesday, April 19th 2011, 9:42am

Sorry Fluffy only just seen your reply with questions now - i've not been on here quite as much recently. I live in Norway, but had tests done at Dr Gorgy in London. My clinic here were totally against all the immune drugs etc and would not have taken responsibility for me doing a cycle with them and working alongside Dr Gorgy, but Dr Gorgy was more than willing. We found a clinic about 4 hours away that would support the immune drugs and work alongside Dr Gorgy - they weren't believers in IVIG, but Intralipids was ok. Dr Gorgy is willing to work with any other clinic, so long as the clinic are happy for you to be taking those drugs. In the end we decided to give our clinic one last try before trying the immune cycle with the clinic 4 hours away and then it all else failed i'd have given up my job and come to the UK for a full immune cycle with ARGC.

Make sure that you always let your clinic know what you are doing and so they are taking care of you with their eyes open. Hope Erkani was able to help you out and you are doing well xxx