CARE Fertility Bulletin Board

Melski · 07 Jan 2011

Hi, I wonder if anyone can offer me any advice please.

I'm currently miscarrying following my first attempt at ICSI which resulted in a BFP from a Grade 1 embie. I only got to 5.5 weeks, a week after OTD, before I started bleeding.

We have been TTC 3 years and this was the first time I have ever fallen pregnant. I have suffered with thrush like symptoms for around the last 16 years and can't help thinking I have an undiagnosed problem that may be affecting my fertility, together with causing the irritation. For example, I've read that Vitamin D deficiency can cause this...

I am reluctant to use my frozen embies without having further testing done. As our cycle was perfect, something still went wrong early on for our little bean to slip away.

What I'd like to know, is what sort of things do Level 1/2 tests look for?
Will Care let us get the tests done after just one miscarriage?
Are there any benefits to getting just Level 1/2 test done first?
My GP is very supportive and will assist if she can. What are the cost implications with/without GP help?

Thanks in advance for any advice you experienced ladies can offer x

SomedaySoon · 15 Mar 2010

Hi Melski

I'm so so sorry to read about your recent loss.

The information I was sent from care/the tests I had in 2010 were:

Level 1 tests (initial tests) â€“ you may already have had some or all of these done previously:

Blood tests for the woman:

1. Full blood count, Fasting Glucose, Liver Function tests, Urea and Electrolytes (to check general health of the woman)

2. Thyroid function tests (both free T4 and TSH) (Care like TSH under 2.0)

3. Anticardiolipin antibodies (both IgG and IgM)

4. Thrombophilia screen (must include Anti thrombin 111, Factor V Leiden, Factor 11

Prothrombin gene, PAIP Polymorphism, Activated Protein C Resistance, Protein C/Protein S,

Lupus anticoagulant, Methylene tetrahydrofolate reductase gene mutation (MTHFR)) - To check for blood clotting issues, these are common in immune ladies.

5. Autoimmune antibodies (must include anti-nuclear antibodies, thyroid peroxidase and

anti-mitochondrial antibodies) These are a marker for level 2 problems,

6. Karyotype (this is a chromosome check)

All these tests can be arranged at CARE. Cost - Â£862.00

Blood test for the man:

1. Karyotype

This test can also be arranged at CARE. Cost Â£261.00

These results take approximately 4-6 weeks.

Level 2 tests (2 standard packages): These are the 'chicago' tests

1. NK assay

2. TH1:TH2, intracellular cytokine ratio

3. HLADQ alpha (for male and female partners)

Cost - Â£1187.00 with HLADQ alpha or Â£910.00 without HLADQ alpha

I realise how mind boggling this list appears at first!

I'm sure care will let you do the tests at any point, the level 1 tests are shown as a package, but i had already had some done with GP so they lower the price in that case and only charge for the tests you need. Obviously the more you can have at GPs the better! Remember to get the actual results to give to care so the consultant can interpret the levels.

With regards to having both level 1 and 2 that will be up to you and the consultant but i wanted to do all from the off as i didn't want anything left uncovered! for example if you do levels 1's they are usually treated with steroids and clexane, but intralipid is also added if level 2's show a problem. My advice would be if you can afford it to have both done, otherwise you could do level 1 and only if that shows a problem do level 2's. It is possible to have level 2 issues without level 1 issues though.

hope this helps and hope it all goes well in the future for you xxxx

Melski · 07 Jan 2011

Somedaysoon, thanks for such an informative response. I have a review organised for Monday of next week and will discuss this with Care then. It helps to know that I can push for these tests now, as I just 'feel' that something isn't right. We don't have loads of money, but have been saving hard for our next self-funded attempt. I feel that without sorting any potential underlying issues, this will be money wasted, so think you're right about having both L1/2 done straight away if possible. Thanks again x

silverbirch · 01 Nov 2010

Hi Melski,
Sorry to hear your news, can totally understand you want to check out issues before using precious frosties. If you have a supportive Gp they can do most/if not all of Level 1's for you saving you Â£Â£ which is worth it. The karyotype is the expensive level 1 test and our gp did that as well. Just make sure you get print outs of all results for Care to use. As it takes a while for level 2 results to come back for Chicago and see a consultant to review it shouldn't delay things. I did level 1 and 2 tests straight after failure of first ICSI, despite Care consultant suggesting 2 more rounds first - but I trusted our gut instinct and we had issues in both levels so it was worth the money for us.

All the best. x

Melski · 07 Jan 2011

Thanks Silverbirch, do you mind me asking for an example of the type of issues you uncovered and what Care did/are doing to overcome them?

I had been fully intending to have a break from this BB after my BFP, but realise what a god send it is now! x

Rach87- · 08 Sep 2011

Hi Melski

I was hoping i could join this thread, as i am also going to see about having the tests done before my next cycle as we have had one failed fresh icsi cycle and two failed frozen cycles, i have a meeting up at care tomorrow to talk through it all.

I really dont know what too expect really so a little nerves to see if they find something else wrong as well as everything else.

Rach x

Melski · 07 Jan 2011

Hi Rach, of course you can join! I was just looking for information so I know what to expect in readiness of my review appointment on Monday. I haven't had as many disappointments as you have, but am trying to avoid further disappointments, as I have a gut feeling I should have this further testing before trying again.

However you look at it, I'm sure we're best knowing, so try not to be nervous as you'll be armed with really important information if the tests uncover anything, which will hopefully make moving forward more productive. Let me know how you get on tomorrow - good luck x

silverbirch · 01 Nov 2010

Of course Melski.

Level 1 tests showed:
- I had thrombophilia (blood clotting issues) with the Factor V leiden test (and 2 other tests showed thrombophilia also) hence NHS happy to fund my clexane injections with this test.
- My thyroid Serum TSH Level was 2.45 and the consultant said they like it below 2 to help conceive and prevent miscarriage (Gp is funding my levothyroxine and monthly blood tests as consultant wrote to my Gp and as NHS funded cycle they can't really go against the consultant!!)
- Low Activated Protein C (linked to thrombophilia)

Level 2 tests showed:
- TH1:TH2 - the TH1 level too high.
- NK Assay - some levels too high.

For level 1 issues on clexane and levothyroxine.
For level 2 issues on utrogestrone (pessaries - 4 a day instead of 2 a day), prednisilone and 3 intralipids.

Could you ask your Gp about level 1 tests?

Melski · 07 Jan 2011

Silverbirch, thanks for the info. I had a chat with my GP by phone this afternoon and she was fab. I gave her the info in Somedaysoon's post above and I've gotta get Care's latest list from them on Monday and see her with these later in the week. She reckons she can do the blood clotting and thyroid ones for me, but said they won't do the karyotype which is a shame since it's the dearest one! Even if she saved us a few hundred quid, I'd still be grateful.

I really hope that having uncovered the extra issues means you'll have more success this time round and it's good to know that the NHS are currently funding the extra treatment alongside your funded cycle. Where are you in your treatment (fresh or FET) and are you only able to have one embie put back in your area if NHS? Please keep me posted xxx

silverbirch · 01 Nov 2010

Melski - glad your Gp helpful, although might be worth asking why not do karyotype as my Gp did (the lab couldn't do the PAI-P) - although as it just tells you if you have 46 xx and 46xy it was not the one that determined any immune treatment for us. Isn't it a shame in an National Health Service it is not the same treatment all over our nation.

Thanks - I am currently 18 weeks pregnant due to immune treatment. Yes on NHS only one embie put back, no frosties as they took them all to blast. But hopefully there is no need.

Melski · 07 Jan 2011

Silverbirch that's fab news! Thanks again.

Another question if anyone can help? Prior to my OTD, I started getting really sharp chest pains, right in the middle of my chest. These are still continuing while I miscarry and I probably have them twice a day, but they're over in a split second. I have also had a sore throat and temperature since OTD. Are these signs of a possible infection and could such an infection have been responsible for my early MC?

Hope someone can help x

Tracey A · 04 Nov 2010

Hi Melski

I can't help you with your symptoms but I think you should phone CARE and check with them incase its related to the treatment you had. Better to be safe....

All the best
Tracey

Melski · 07 Jan 2011

Thanks Tracey, I'm planning to mention the chest pains at my review on Monday anyway, but just wondered if anyone else experienced similar symptoms before miscarrying, but guess not! x

3wishes · 14 Aug 2011

Hi Melski - just wanted to wish you luck with your review appointment on Monday

3w xxx

Sannah · 28 Sep 2011

Hi melski

So sorry to hear about your loss... Hopr the review goes well... It may be puzzling but the level 1 and 2 are worth it if ur planning more ivf treatment.

Good luk

Xxx

Melski · 07 Jan 2011

Hi guys, I hope to get the results of some of my L1s back from the GP this week. She has told me on the phone that my FBC, thyroid and anticoagulant were all fine. I am collecting a print out of the results though, as I know Care's parameters for 'fine' can be different.

The NHS has rejected the Thrombophilia panel and the Autoimmune Antibodies, so I'm just awaiting the Anticardiolipin Antibodies and Karyotyping back. I understand the Karyotyping takes a while as it goes to Oxford, but should the other one be taking so long (10 days since bloods now)?

Has anyone else had to have the Thrombophilia and Autoimmune Antibodies tests done at Care and if so, can you remember the cost of these separately from the Care 'package'?

Thanks xxx

Melski · 07 Jan 2011

Hi SB, have got results now and Thrombophilia Screen says 'not indicated' which I presume means they wouldn't do it, as GP did 'indicate' it...

Also, my thyroid says 2.74 so be interesting to see if I'm told this is too high as I understand you were....

Keep you posted x

silverbirch · 01 Nov 2010

Melski - George at Care said anything over 2 was too high and wanted me to take levothyroxine before began next cycle of ICSI and to continue it throughout pregnancy, with regular monitoring. He wrote to my Gp to get it on NHS prescription for me, plus monthly blood tests to check level between 0.3 and 2, as Care discharge you a few weeks after BFP so good to have that letter!!

He said a level above 2 can be a risk factor for miscarriage, which I notice you sadly experienced recently, although NHS tend not to say this.

Melski · 07 Jan 2011

SB, you are a constant source of good advice and I'm really grateful you continue to keep an eye on this thread!

Care, N'ton pretty much said same thing. Gonna do me a GP letter which I'll get a copy of so I can get on thyroxine asap before next cycle with monthly bloods to check levels have decreased.

Unfortunately, the majority of the L1s I had done are missing parts, so I'm repeating them all except the karyotypes with Care tomorrow morning. Cost is Â£650, so have saved Â£450 if the NHS do the karyotypes ok.

Definitely not gonna have time to get the L2s done before we cycle again in January, but at least if the thryoid is fixed and anything else comes up, we'll feel like we've made some changes before we try again.

xxx

silverbirch · 01 Nov 2010

Hi - be great for them to do that letter. Actually it is one of the cheaper drugs if you have to pay for it, but every little helps!! At least worth a try to have them done by Gp - and worth saving the karyotyping money. It is good you are finding issues already which means they will tweak your protocol. If you have any thrombophilia issues from Level 1 some of the medication for that is what they use to treat some of level 2 issues.

Good luck with rest of tests/results.

Melski · 07 Jan 2011

Thanks for the reassurance re leaving the L2s for now. Keep you posted when I get next lot of results from Care's tests. Hope you're having a happy and healthy pregnancy xxx

Sarah76 · 16 May 2011

I've found this thread very interesting to read, so thanks to Mel for starting it and sb and ss for the information.

I've now had 2 failed blastocyst transfers, the last one of which I miscarried early at 5 weeks. I have 2 more blastocysts in the freezer which I am planning on using in the new year. But I can't help wondering if there might be something else wrong. I don't have any specific reason to think this, but there is a nagging doubt.

Unfortunately, I haven't found my GP or the NHS that helpful in the past, but I may try to see if I can get the thyroid test done at least, if you think it might be worth it?

I am awaiting your results, Melski, with great interest!

silverbirch · 01 Nov 2010

Sarah - if you get the complete list of Level 1's from Care (think they are somewhere on this thread also as I know I posted them somewhere!) then it might be worth going to Gp with the list. The thyroid and thrombophilia tests should in theory be ok for gp to do - the thrombophilia tests the NHS do after 3 miscarriages, so the fact you miscarried an IVF attempt might get your Gp to do it? The treatment for raised TSH level isn't that expensive even if your Gp will not fund it, as Care can give you a private prescription and if you have thrombophilia factors your Gp should then fund them, hopefully especially if you get Care to write to them saying you need xyz.

L_ouise · 08 Jun 2011

Hiya ladies,

I was just wondering how long it takes to tell the CARE consultant that you want all the immune tests doing for women and then getting the results back?

Thanks

Melski · 07 Jan 2011

Hi, told them at review, 2 weeks since bloods done by care and results still incomplete. 4 weeks since kartyotypes done by hospital and not back yet. That's just level 1s xxx