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  • "Little Wish" started this thread
  • United Kingdom

Posts: 62

Reg: Oct 4th 2010

Location: Wordsley

Children: None, but trying!!

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Thursday, January 27th 2011, 12:07pm

Advice Needed Please !

I'm just searching for a little advice really on the immunology side of things.

We had 2 ICSI treatments last year which both ended in BFN's. We've had our review appointment with the hospital but I've lost a bit of faith in them to be honest. Our consultant is very negative about the immunology side of things despite me having had trouble with Thyroid Antibodies (Graves Disease) in the past & having steroids to dull my immune system at that time. They are reluctant to prescribe them. My recent blood tests have all come back in the normal range but I'm convinced I need to go down the immunology route & have some tests done to see if I have unknown issues on the fertility side of things! We originally had ICSI due to male factor but I'm convinced we are a more complex case than we thought!!

We would be looking to go to Care I think, but what tests would we be looking into & how much would they be?

I suppose we want to know what we dealing with before we go for another ICSI cycle, maybe we are over thinking a bit but its so hard not too. Its been a struggle to get over the last cycle as everything went really well & it was such disappointment for both of us.

Any advice you may have on this would be much appreciated

Thanks x
[zx127]
1st ICSI - :BFN: - Mild OHSS
2nd ICSI - :BFN: - AF arrived early
3rd ICSI - :BFN: - At least we got to test date!!

Moving on in 2012 to a bit of Immunology Testing and change of clinic I think. Maybe that will bring some luck!!

Posts: 3,164

Reg: Feb 16th 2009

Children: Yes please

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Thursday, January 27th 2011, 12:53pm

Hi hun, immunology is still new and "unproven" in the eyes of so many drs. There are great stories of success on here, but I guess it needs a little more in terms of proof before more drs will accept it as a legitimate cause for infertility.

There are two levels of tests, I'm sure you'll know. I think some girls have managed to get the first set done on the NHS. It's worth a punt.

The second set are called Chicago's as they get sent off to the States for analysis. For this level I would expect to pay about £1000. It's not cheap! Treatment options then follow the results.

As you've had two BFNs after apparently good cycles, it's worth investigating a little more. You've mentioned an immune flare before that had to be treated with steroids.

Why is your clinic so anti? Whilst my first clinic didn't support it they would prescribe the drugs (but only after ET). Also, why have you lost faith in your clinic? Is it more that the 2 BFNs. If so, investigate alternative clinics. A number of guys on here love Care, so they are worth a consult.

Have you read the Dr Beers book (is your body baby friendly). It's not light reading, but it's very informative.

I really hope you find some answers. I'm sure one of the more researched immuneys will be on soon ans will be able to give chapter and verse (ie. what each test contains).

Good luck, x


3 IUI and 5 IVF :BFN:
What's the future?
MY DIARY


High NK and high PAI-1
On Metformin & Immune Cycle

chatterbox

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Thursday, January 27th 2011, 2:30pm

Hello there LW :cuddle

As Sammy said Level 2's are what you'll need if you want to go down the immune route and yes they are expensive approx £1000. Then there are a few others CARE recommend which come to about £300. Buuuuuut speaking from personal experience - they are BLOOMIN worth it! They will either rule out problems which is still totally worth it, or they will provide you with a starting point to diagnose and more importantly treat any issues.

CARE are a bit more accessible than ARGC, as in there are more clinics across the UK,.. The test costs are standard, the tx protocols are not and can vary enormously in price.

From my experience CARE (Manchester) are very thorough and if there are any gaps in your test results they will want them filled! They are also happy to let your GP or local hospital do any of the more basic simpler tests to save you money.

Don't leave any stone unturned if you possibly can. I know its easy to get into a tizz about immune tests, and worry that you should be getting them done because the tx seems to work for ladies with issues - but with 2 ICSI behind you they haven't got a huge tx history to work from so an initial consultation might be the best course of action and see what they say.

Big hugs xxx

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

Posts: 587

Reg: Mar 10th 2010

Location: Newcastle

Children: 2012 will see us bring home are baby one way or another

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Thursday, January 27th 2011, 6:01pm

Hi did not want to read and run. Getting my immune tests is one of the best things i have ever done. I knew deep down there was something else and care has found them. We have spent a total of £3000 on tests level 1 & 2 immune tests for me and DH plus sperm tests for DH. One more test next week and we are good to go for march.

Good luck with your furture txs

:xxx:
7 x BFN: :rant:

2013 Moving on to something new

Maria72

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Thursday, January 27th 2011, 6:28pm

Hi little wish! I've had my tests done too.

As you've had trouble withThyroid Antibodies I would have at least the level 1 tests. But if that is normal then you need to look at your response to stimming as well. As the girls have said the tests are expensive and you've only had 2 BFN.

Only you can decide! Good luck xfingers

ruthie

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  • "ruthie" is no longer a member of FZ

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Friday, January 28th 2011, 2:02am

I would definitely go for immune testing honey as then you will feel you've ticked every box.

Are you on tx for Grave's? Underactive thyroid is much more common in women than overactive and docs tend to be more proactive at treating underactive thyroids in my opinion as they see more of it (though still rubbish at treating underactive too!)
However, overactive thyroid or Grave's disease still has massive impact on fertility so if that's not being treated or at least your thyroid function checked currently then it should be. They will check thyroid stuff at CARE anyway as part of the testing, especially as you have a history of problems. I honestly don't think you will regret seeing them or spending the money. We've spent a fortune on tx and immune stuff so far, as yet with no luck and I don't regret a penny of it!

xxx

  • "Little Wish" started this thread
  • United Kingdom

Posts: 62

Reg: Oct 4th 2010

Location: Wordsley

Children: None, but trying!!

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Friday, January 28th 2011, 11:43am

Hi Girls,

Thanks for all your responses, its hard not knowing what to do isn't it. After a good talk with my fella, we have decided it would be best to spend the money & get some tests done, then at least if anything is picked up we can deal with it. Also, we know 2 cycles isn't a lot to go on, but being self funded it seems silly to keep going through cycles if we may have issues. It's just something in the back of my mind, plus we never do anything the easy way! Do you all feel like that as well?

Ruthie, I had a flare with my thyroid in Jan 2010 & ended up being diagnosed with Graves Disease, never had issues before at all, just came out the blue, I had blood tests done, and they found i had over-active thyroid. I was put on a course of steroids to help combat the antibodies which were attacking my eyes, (looked like I'd done 10 rounds with Mike Tyson), but they left me to see if the thyroid levelled itself out, which it has. I've just been discharged from the Endocrinologist without ever having any meds for the Thyroid itself. They said I'm a random case.

Maria, stimming has been ok, we did a long protocol cycle first & I got 17 eggs, but being an egg sharer, I had 9, 4 fertilised, 1 transferred at day 2. (The others did stop dividing though). Ended up with OHSS, so 2nd cycle was short protocol, 13 eggs collected, 11 fertilised, 2 good embryos transferred at day 2 (again we had embyros that stopped dividing, this is my big fear at the minute, would love to get to day 5 transfer with that amount of fertilisation!), anyway despite a good 2nd cycle again we fell at the last hurdle and had an early bleed before test date.

How do you keep PMA! I need a kick up the bum! :scream:
[zx127]
1st ICSI - :BFN: - Mild OHSS
2nd ICSI - :BFN: - AF arrived early
3rd ICSI - :BFN: - At least we got to test date!!

Moving on in 2012 to a bit of Immunology Testing and change of clinic I think. Maybe that will bring some luck!!

Posts: 3,164

Reg: Feb 16th 2009

Children: Yes please

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Friday, January 28th 2011, 2:17pm

I think you are wise! I tested after three BFNs and wished I had done the tests earlier!

Good luck and keep in touch, x


3 IUI and 5 IVF :BFN:
What's the future?
MY DIARY


High NK and high PAI-1
On Metformin & Immune Cycle

Maria72

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Friday, January 28th 2011, 4:54pm

I think you've made the right decision. Good luck blowkiss

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Friday, January 28th 2011, 6:20pm

Didn't want to read and run. The girls have all explained really well. Immunology is a complex area, which even the professionals cannot agree on!!

You said earlier that you had trouble with thyroid antibodies and have Graves. I am not sure what Graves is, but I have problems with thyroid antibodies and have been diagnosed with Hashimotos. I was told that once you have thyroid antibodies in your body they don't leave, so it would be worth double checking your results. My Dr told me there was no medication to lower antibodies or to help them disappear (I was hoping I could make my problem vanish!!), just for the thyroid and that once they are there they kinda just have to do their own thing. I did notice that my antibody level did lower once on medication, but still there. Just worth checking out because this can have an effect on your fertility. Everyone reacts differently to different levels of thyroid, but I believe that my level of 4.45 with antibodies had a massive effect on my fertility. First cycle after regulating my thyroid to 2 and I got pregnant, although very briefly, but it was a massive step forward. However, in staying that I have a 42 year old friend who has a tsh of 15 and got pregnant accidently. I know my body is very sensitive, as I am as a person! I always has a strong feeling about my thyroid, but was told by numerous Dr's that it was fine, when quite clearly it was not. Stand your ground and go back to an endocrinologist specialist just to get it all checked over again and make sure you don't need medication. The level 1 tests will probably tell you what you know, the level 2 will go into a lot more detail.

M2M has hasimotos also - you should get in touch with her. She tracked down a research document that was done on the benefits of using steroids and clexane(I think) with a IVF cycle in women with thyroid antibodies and this persuaded her consultant to treat her with these drugs in her current cycle. I am sure she would be happy to share it with you. I think she might be in the FET diaries. xxx

This post has been edited 1 times, last edit by "Amazing Grace" (Jan 28th 2011, 6:21pm)


Skizzy

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Posts: 15

Reg: Feb 3rd 2011

Location: west Cumbria

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Monday, February 21st 2011, 8:58pm

Hi Little wish,



I just wanted to pop in and say, after 3 failed cycles I am 2 looking into immunology. I also have a 'feeling' that something else is going on so know exactly what u mean. I wasn't totaly happy with my tx so have been looking into Care, they sound great and girls on :FZ: have said some good things.



Anyways Good Luck xfingers and keep us updated.
DW 27 - PCOS
DH 33
TTC 10yrs
1 IVF - No ET
2 ICSI BFN's

  • "Little Wish" started this thread
  • United Kingdom

Posts: 62

Reg: Oct 4th 2010

Location: Wordsley

Children: None, but trying!!

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Thursday, July 7th 2011, 2:38pm

Well girls, just to update, after Cycle 2, we said we would go for Immune Testing and in the end didn't, Cycle 3 went ahead in June and again we got our BFN so we are going to look into going to Care to get some Immune Testing done. (Although our embryo quality wasn't very good on this cycle, and to be honest I think this is a big worry for me). My own doctor did do a few level 1 tests for me but not many, I think I have the results in my ever expanding IVF paperwork file.

Anyway we have said we aren't going to do anything till next year as we need a bit of time off first before starting again, but I'm going to enquire with Care Nottingham I think and get some more info.

We're hoping that a change of clinic & testing may help us in the right direction. Fingers crossed anyway. I just wondered if there is anyone else in a similar situation? I'm guessing that I will need to sort out getting my file from my first clinic so we can take all the info with us when we decide to go into cycle 4 with a different clinic.

Hope all you Immunies are keeping well x
[zx127]
1st ICSI - :BFN: - Mild OHSS
2nd ICSI - :BFN: - AF arrived early
3rd ICSI - :BFN: - At least we got to test date!!

Moving on in 2012 to a bit of Immunology Testing and change of clinic I think. Maybe that will bring some luck!!

    United Kingdom

Posts: 1,430

Reg: Dec 5th 2008

Location: Wiltshire

Children: Yes please!

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Friday, July 8th 2011, 6:47pm

Hi Little Wish

Sorry to hear that your tx in June didn't work. I changed clinic this year and have had immune tests done with Dr Gorgy in London. I have a lot of immune issues so glad we did it. We got copies done of our file. Dr Gorgy didn't look at the file but asked for all the details of tx cycles, drugs taken, no. of follicles, eggs and embryos from fresh cycles and any issues, medical conditions.

Good luck and try to have a good break xx
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
MY DIARY

Amy

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Reg: Jun 21st 2010

Location: cumbria

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Saturday, July 9th 2011, 10:30pm

Hi Little Wish, all the girls have explained it brilliantly I've just had blood taken at Care for all the immune tests which cost us £2167.00 in total but hoping it will be worth every penny because I have a gut feeling there is something wrong & just hoping then we can move forward & get the right treatment. Good Luck with everything xxxx
AMY:dog:

TTC 4yrs

Me 26yrs, Dh 29yrs

Unexplained fertility

2x Clomid cycles

1st IVF June 2010 BFN

2nd ICSI Feb 2011 BFN

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Saturday, July 9th 2011, 11:11pm

Sorry to hear that your third cycle didn't work sweetie. I just wanted to write to tell you that I was in exactly the same position as you, having thyroid antibody issues etc, etc. When I replied to you way back in January I was in the very early stages of pregnancy, but hadn't told anyone, not even on here! I am now almost 34 weeks and don't take a day for granted and really won't until our little one is safely here with us. We ended up going to Dr Gorgy for the tests after our 2nd failed cycle, which came back with pretty dire results in the way of aggressive natural killer cells, which basically means the immune system is working extra hard. This is common with antibodies. Our 3rd cycle worked, but was an early loss just around the time we got our results back from Dr G.

To cut a long story short we are in Norway and decided to give our clinic one more go before trying a clinic 4 hours away from us privately who would treat us with immune drugs - our clinic weren't intersted in the immune stuff at all. My diary has the full story, so go and read it and if you have any questions at all about anything please PM me. It was a nightmare getting my thyroid sorted as well.

On our 4th cycle we got our BFP with no extra immune drugs, just extra progesterone, but I was doing a series of things myself that I had researched a lot into and which I firmly believe helped us to get our BFP. I do believe there is clearly something in all the immune side of stuff, but I suppose my story just gives hope for those who can't afford immune tests or if their clinics won't treat them. Maybe we were just very, very lucky, but it can't be ignored that I had crappy immune results yet managed to get pregnant with a non-immune protocol.

At the end of the day, this is your journey and you have to do what you think is best for youselves as a couple. I wanted immune tests because I didn't want to leave any stone unturned and I don't regret it for a minute - we might need immune treatment in the future when we want to try for siblings you just never know. Talk it over with your DH and see what you think and please don't hesitate to message me if you have any questions. Wishing you the best of everything and I hope you get success soon. xxx

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Sunday, July 10th 2011, 6:30pm

Hi Little wish,

Just wanted to pop in and say hi. I'm in exactly the same posotion. 5 failed ICSI behind me and now investigating immunology. I've an appointment at Care Nottingham on the 5th August so just waiting now..at least it feels as though im taking a positive step in the right direction.

Enjoy your time out - I think we all need time to get our heads sorted before moving on. I have been asked for copied of my old files for Care - fortunately both clinics have been fine with this request - although there is a charge.

Good luck xx
Never give up on your dreams...they do come true.
ICSI #8, Anna born 26/2/14....the most amazing gift in the world x

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