Immunology Testing

[SuziQ]

Hi Tam
The biopsy is done between CD19 and CD25 - that's the implantation window time. It's the same legs up in the air scenario that we're all familiar with however the doctor takes a scrape of your endo lining. As NK cells are at their most prolific in the uterus during implantation time, they test it to check how many there are. Hint, pop a couple of Nurofen Plus an hour beforehand and you'll be fine I did have to clench my teeth at the time but it was only temporary 'discomfort'...
I might add, it really needs to be done by someone who specialises in the immunology area. Have you tried phoning/emailing Gavin to run any of this by him? He really is a lovely man, I don't mind you mentioning my name - he knows me well . If he can't consult for you he may be able to refer you to someone else over your way. Let me know if you want his email addy.
And yes, I can well understand the hair pulling!

[ann]

Just wanted to pop in and wish you all well.

You are never far from my thoughts.

Not much happening with me, we aren't actively TTC, iykwim. But we can all believe in miracles can't we?

Coming up for a rough time for me, it was 12 months ago next Fri that I got a BFP. I still have that little stick, still 2 strong blue lines, I can't throw it out.
Ann

[Keen]

I can second the greatness of Gavin, Tam - really worth talking to about it.

[justawaiting- brisbane]

While I'm not quite at the stage where I think I will need immunology testing I feel like I'm getting very close. I've been copying and pasting all your ideas and will keep me for If/when I might need them. Thanks for taking the time to help the rest of us out. I was pleased when my FS the other day said "often it is due to immune system" -- good to know he has some advanced thinking in this area. I have requested progesterone testing post FET and I was surprised when both the secretary and phlebotomist asked if I was getting the correct blood work done (progesterone & estrogen). Wow even to make sure there is no progesterone issues more docs should be testing this !! This is one more thing I can rule-out as being an issue in my IF journey. Ok the following is the categories of immune issues.

1. Immune abnormalities –Dr. Allen Beer (now uni. Of Chicago) is a pioneer in this.

A. The mother’s system can produce antibodies that attack the cells that build the placenta and its blood supply.
B. The mother’s system can produce antibodies that attack the nuclei of the cells of the uterus and the placenta.
C. The mother’s system can fail to produce the blocking antibodies that stop her immune system from attacking the fetus.
D. The mother’s system can have an overabundance of natural killer cells.
E. The father’s system can produce antibodies that attack sperm.

[justawaiting- brisbane]

oops one more thing... "The Colorado Protocol" I've heard of it. I believe it is a set a drugs that one doc in the U.S. set up to treat women. eg. steroids such as prednisone, heparin, possible baby ASA (not always together with heparin), etc. sort of a IF cocktail.

[collo04]

Hi Suzi Q
Ive just had my first attempt of IVF fail in miscarriage. Met with FS today and he said the fact that I have thyroid antibodies but my levels are fine at the moment that they arent playing a major role in our infertility but my GP begs to differ but says im in the hands of the FS and linic now. Thyroid antibodies means I am in autoimmune failure and my thyroid will cease to function its just a matter of when. Do you think it is worth going to see a reproductive immunologist? How would you get a refferal.

[Inanna]

Collo - I am so very sad to hear of your loss... :hugs: This is a painful journey sometimes.

The answer to your query is an unresounding YES and do it yesterday! As you have access to Sydney I would highly recommend consulting with Dr S. I have had nothing but positive interactions - he certainly isn't the type of professional that says he has all the answers but he does have many in my opinion and it would not be a wasted visit.

Wishing you lots of blessings - keep us posted as to how you go...

[butterfly_warrior]

Collo, your GP should be able to give you a referral to Dr S. He's where I'll be headed as soon as there's an indication that we do actually have a problem. My FS and rheumatologist both assure me that I won't, but I'm not completely convinced. If you google the IVF Australia website you should be able to find his clinic and contact details. Your GP shouldn't have issues referring you to another specialist, if s/he does, just say you need a second opinion on what the current one is saying.

Good luck, Collo.

BW

[collo04]

Thanks so much everyone
Can I see Dr S even though Im not with IVF sydney but Westmead?

[Keen]

Dr S is with IVF Australia - but you can get a second opinion anytime you like - but you will nede to get a referral from your GP. His contact details are on IVF Australia website (Dr Gavin Sacks)

[scarlet]

HI Ladies,

I have kind of a long story, but I will try to keep it short. It's great to read all these positive stories about Dr S. as I have been thinking about going to see him - I have pretty much made up my mind! He was the only RI I could find via internet searching or the phone book.

Any thoughts on this:
7 failed pg's, all before six weeks. MTHFR +, and +ATA (anti-thyroglobulin antibodies). My ATA is twice the normal level. I was on a RM program with SIVF. I finally spoke to doctor there yesterday to discuss the results (the program manager). She said that the ATA is not high enough to cause any problems, that she has seen levels ten times that (sure, I understand that, but ?). She also said the MTHFR was not a problem, which I don't believe either. She seems to fall into the camp of docs who only treat MTHFR if you have elevated homocysteine (mine was 12/13 so the very high end)I also noticed that there was no APA panel on this test list...although I always thought there was, as ACA was included. No NK testing although it is possible to get an endo biopsy (but mostly because they are looking for LPD, not NK).

End result was that I was offered clexane to continue to try naturally, or the option to do IVF with PGD. I have read all DR Beer's info as well as many others. I do not want to do IVF if there is an underlying issue that means it will fail. Otherwise I would be happy to at this point.

Any thoughts? Next stop Dr S?

[butterfly_warrior]

Yes! Go see Dr S!

I'm still in the process of going through testing... only suffered one miscarriage, but that was after IVF. I have an active autoimmune condition (nobody knows what it is), and discovered after my miscarriage that I have a family history of some sort of clotting disorder. I've had three doctors (my current FS, my rheumatologist and my GP) all assure me I had no cuase for concern, but I couldn't shake the worry.

Dr S listened, and while he did mention the possibility that they may do all this testing and find nothing, he was prepared to let me go through it just to give me the confidence I need to go into my next IVF cycle. I found him to be kind, gentle, and he listened to everything we had to say - and left me feeling that no stone would go unturned. If there was a reason for my miscarriage, we'd find it.

BW

[justawaiting- brisbane]

Scarlet -- ok I'm adding my two cents cause you asked for it.... GO see him !! With all this IF stuff in the end you really need to feel that you "have done all that you could do" and for each of us that level is different. The tough part is that time is never on our side and all the testing takes up time. Hey, nothing wrong with an email and a phone call -- could it hurt just to try ????

Heather

[scarlet]

Thanks ladies for your input. I am going to make an appointment to see Dr. S. (Off I go to get another referral ). You are both right - I just can't shake the feeling that these issues are important on my ttc journey and I just can't embark on IVF without feeling like I've covered all bases.

Butterfly - my story is very similar to yours - my jaw almost hit the floor! I have PCO on u/s with normal hormones except slightly elevated androgen. I also have/had RA as a result of glandular fever - I had CFS as a side effect, but I recovered from that, with mostly just joint pain now. The weird thing is that I had a naturopath say practically the same words - you have an RA disorder that is rare and hard to identify! I had been to one GP who diagnosed RA but no others would confirm this. Now it has been discovered that have MTHFR! FYI - protein C is on the testing panel that I had at SIVF.

Collo - I am sorry for your loss and would love to hear more about your thyroid issues.

Thanks for all your help ladies.

[butterfly_warrior]

Scarlet, I'm about to freak you out even more... I was diagnosed with CFS back in 2001. My CFS was the after-effects of Barmah Forest Virus, which is very similar to Ross River Fever. Eventually my energy levels and brain function improved, but the joint pain part of it never went away. A change of GP, further testing and I got given the label of "serum-negative rheumatoid arthritis". When we started TTC my initial blood tests showed hormone levels that were only slightly out from normal, but they got MUCH worse in time. Scary to see just how similar our medical history actually is - I thought I was the only one!

Funnily enough, I was saying to DH last night that I was choosing to believe that Dr S will find nothing, because I just can't be unlucky enough to have had CFS, to have the arthritis thing, to have the PCOS *and* to have some other problem thrown in there as well... I think you'd know what I mean by that. I guess I can't rule out the possibility, though. Perhaps in time, with further research, someone will figure out all the details of what we both have (not going to assume it's the same!) and know exactly how to fix it... For now, I think Dr S is our best hope. I booked my next appointment with him - 19th of this month.

Scarlet, I'm also going to say that I initially had thought to go see Dr S before we started IVF, but was eventually talked out of it by the fact that my rheumy, GP and regular FS all said I had nothing to worry about at all in relation to the arthritis... It was the best information I had to go on at the time, but I do wish I had done it before hand, and not waited until after my miscarriage before I saw Dr S.

BW

[justawaiting- brisbane]

I wonder if it would confuse Dr. S if you both book an appointment for around the time time and date and then meet up BEFOREHAND to compare your symptoms. You might find talking to each other first (even if it is my email) that you can write down more of the symptoms that you have. Take the time NOW to write down all the doctors, their phone numbers, their diagnosis for you. Write down the procedures, operations you've had. Try to get a hold of your medical records to show Dr. S what your lab results were. Write down your allergies, medications you've tried and their results. I think if you put in the big effort to do this you will get so much more out of your doctor visit with Dr. S.

Heather

[scarlet]

Just awaiting, !!! I just LOL so loud that DH even tore himself away from his computer (a minor miracle) What do you say, BW??

BW - WOW. All I can say is WOW. Very similar and I do know what you mean. Now, for several days, including today, I have been about to call Dr S clinic for appt, I have just been crazy busy. But I am doing it tomorrow.

Since my last post, I have had my 8th loss/failure, call it what you will, AND consulted with Dr. Ogle at RPA RM clinic. I must say I was very surprised by Dr O. I would def recommend him (which is something coming from me). Why? Because he looked at all the tests I had at SIVF, quite comprehensive, but on later analysis, some things missing - and he said, there is more we can do. There is another layer of ACA/immune and thyroid testing that we can do. ANd we did. Frankly this was everything I wanted to hear at the time. He said if this shows nothing then we will talk about empirical treatment, make a plan. However, I still can't get to see him and the results until October 30th. And he still falls into the camp of MTHFR only causes problems if your homocysteine is elevated. I just don't know about that. I'm really interested to see if the thyroid panel shows up something.

I am resolved to call Dr S clinic tomorrow. I will KUP on date. Question: will he do the full APA panel and NK panel?

Butterfly W - your appt is only a few days away! Please KUP. I will check back for updates.How are you doing?

Heather - I have most of my recent tests in a file. I insist on copies of everything. I don't care if the evil receptionists think i am pushy - it's my info and I have a right to know. Some of the older stuff could be hard to get though.

Thanks again ladies for all your input.

[butterfly_warrior]

Yep, only a few more days. I'm nervous, excited and terrified all at once. I'm not sure whether I'm more scared that he won't find anything or that he will.

As for the APA/NK testing... the NK is a yes - that's the test that is done at St George hospital. If the APA panel is what I think it is, then he didn't do it with me as my rheumy has done it several times and we had the results of them available.

Will certainly keep everyone updated on progress.

BW