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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 ****tail.
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.
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... :hug:
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
Thanks so much everyone
Can I see Dr S even though Im not with IVF sydney but Westmead?
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)
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?
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
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
Thanks ladies for your input. I am going to make an appointment to see Dr. S. (Off I go to get another referral :rolleyes:). 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.:D
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
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
Just awaiting, !!! I just LOL so loud that DH even tore himself away from his computer (a minor miracle) :D:D:D:D:D 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. :wall: 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.:D
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
Butterfly warrior -- hope the next couple of days go by fast for you -- we can't wait to hear how it all turns out for you. Getting results can really help relieve alot of stress of the "unknown", eventhough we sometimes don't want to delve into things. Good for you for finding the courage to push forward and get some answers.
Heather
Had our appointment yesterday... Pretty much everything clear except that I'm heterozygous for the MTHFR gene, but my homocysteine levels are normal. If Dr S is going to say that's not a problem, I'm going to believe him!
But when it comes to the NK test - Dr S doesn't like to see a level above 18, mine was 13, but I was on 10-15mg of prednisone at the time. I can't remember exactly how much I had taken that day. It's not enough to say it is definitely a problem, but it's also not enough to say that it's definitely NOT a problem.
The plan ahead is that I stick with my 10mg of prednisone and increase to 20mg of prednisone at transfer.
If I have further problems, then Dr S would be interested in doing a uterine biopsy to check out how things are there. If I ever get to the point where I'm not pregnant and not on prednisone, we'll have the NK test repeated.
Still trying to figure out how I feel about all this.
BW
I'm so glad to hear you are moving along and finding some answers. Soon you will get that BFP and be coming back to this thread to help other women with similar conditions.
Heather
Its great to hear that you are finally seeing some answers and possible causes for all this BW. Hope Dr S continues to help..
BW - I am so glad your appointment went well. Sounds like Dr S knows what he is doing - if he can't rule out the NK as a problem sounds like staying on the prednisone is a good idea. I am hetero for MTHFR C677T and my homocysteine is the high end of normal. The three docs I have seen so far said that they don't consider it an issue as long as homocysteine is in the normal range.
Thanks for answering my question about Dr. S. Good luck with your FET!
Hi just wanted to add my two cents worth here. I too have been to Gavin Sacks and he is the first doctor to see that My thyroid antibodies may have something to do with our unexplained infertility. My NK ceells came back at 16.9 and he thinks it suggests an immune problem. Hvaing transfer in december and if it fails I will have a uterine biopsy in January to determine how much of a problem it is.
HI Collo,
That's great that Dr S has recognised that. I have a similar problem. I have elevated ATA on my results (I also have TPO ab but within normal range) but every other doctor keeps saying this is not a problem. :wall: I am seeing Dr S on Thursday and very nervous but also hopeful that we will finally get some answers and treatment!
I have read a bit about NK cells - that the blood NK result that you have? I believe NK cells can affect implantation, so you might be on to something there! Good luck with your transfer!
Hi there,
Can anyone recommend an equivalent to Dr Sacks in Melbourne??????
Very much appreciated if you can!
I don't know of any personally. However, this dotor will do phone consultations to answer some of your questions.
I personally reckon it's a good excuse for a trip to Sydney! Wishing you well on your journey... :hug:
I did the trip from Melbourne to Sydney and it was well worth it - had fun with a friend too
GL
Hi there,
I'm new to this forum and have been reading through threads - I think I need a Repoductive Immunologist too...I've lost count of the number of cycles I've done because I have to do a new one each time because I don't prodce many eggs on drugs (3 is a good result). Even so, we had good success with fertilisation - just implantation is eluding us...
My FS doesn't offer any other solution - just keep on going (perhaps like winning the lotto - you number will come up eventually???).
Any ideas about where to start in Melbourne?
I've also heard about the "colorado protocol" recently - can anyone fill me in?
Loujane
Hi Loujane,
I am booked into see Lynn Burmeister in Richmond who is a director of Monash IVF next week so I can give you some feedback as to how I found her and what insight she gave me.
I have also had a whole lot of blood tests done via my GP, I took a list to him of what I wanted tested, and are waiting for those results which I will take to Dr Bermeister.
In regards to autoimmune tests, I have had done ANA (anti-nuclear antibodies), Cardiolipin antibodies, beta 2 glycoprotein 1 antibodies (which also help to confirm Anti-phospholipid syndrome), Rheumatoid Factor, CRP to see if there is any immune caused inflammation in the body, Lupus antibodies plus a few other tests to rule out infection as cause of recurrent miscarriage. Had a swab done for chlamydia, mycoplasma and ureaplasma. You can have infections inside the cervix which can be a cause of infertility or miscarriage.
Plus I know I have a genetic blood clotting issue to also deal with!
So wanting to be fully aware of any possible clotting, auto-immune or infection issues before trying to fall pregnant again.
On an alternative front, I highly recommend you see a fertility naturopath as they are great for helping with you producing higher quality eggs. I know Nicole MacFadyen from Botanica Naturopathy in East Bentleigh is excellent. She was told she could never have kids and she now has four!
Plus Bill Wong who does acupuncture for fertility is a bit of a guru and has Monash IVF doctors refer patients to him sometimes. He is in Murrumbeena.
Hope all this helps.
Good Luck!
Thanks Tess - that's really helpful - I will definitiley check out those immunology tests. Hope goes well with Dr Burmeister - like to get your feedback.
Hi ladies,
i am new to this site and found it just be chance as i was googling Dr Sacks who does NKcell testing at t Geoorges in London in UK but as i read on here am i to gather he no longer works in he Uk? In the UK we are quite behind as far as NKcell testing goes as the NHS wont test for it but private clinics will at a hefty price!!!
Goodluck to you all and best wishes
wen from cold and wet UK!!!XXX
Hi LouJane,
Saw Dr Burmeister at Epworth Medical Centre.She didn't much about. Checked for mycoplasma and ureaplasma which are infections you can have in your cervix which are implicated in recurrent miscarriage. I tested positive. didn't have chlamydia but did have these mycoplasmas. She put me on specific antibiotics straight away. Same for my partner.
Next pregnancy I have to inject with a drug called Clexane due to a blood clotting issue I have along with aspirin, plus she wants progesterone pessaries first 12 weeks and weekly ultrasounds from 12 weeks onwards to check for incompetent cervix. She isn't delivering babies herself from about May so you need to find another person to deliver. She did recommend Emily Olive from the Freemasons who apparently has studied extra ultrasound courses and is a more skilled ultrasound technician than a regular OB. So it means you can have skilled ultrasounds as often as you like in her rooms to check on things which is comforting.
I had a few autoimmune thing show in my blood in low levels and she doesn't think these will be an issue but has written me extra blood test requests to have this monitored nonetheless.
I am back seeing my acupuncturist from now on too until I fall pregnant and then to weekly until I am 12 weeks. I cant recommend him high enough - Bill Wong in Murrumbeena Rd Murrumbeena.
Just had my first period since my miscarriage on 14th August at 14 weeks. One more cycle after this and we will try again. Third time lucky I hope!
Cheers,
Tess
Hi LouJane,
Saw Dr Burmeister at Epworth Medical Centre.She didn't much about. Checked for mycoplasma and ureaplasma which are infections you can have in your cervix which are implicated in recurrent miscarriage. I tested positive. didn't have chlamydia but did have these mycoplasmas. She put me on specific antibiotics straight away. Same for my partner.
Next pregnancy I have to inject with a drug called Clexane due to a blood clotting issue I have along with aspirin, plus she wants progesterone pessaries first 12 weeks and weekly ultrasounds from 12 weeks onwards to check for incompetent cervix. She isn't delivering babies herself from about May so you need to find another person to deliver. She did recommend Emily Olive from the Freemasons who apparently has studied extra ultrasound courses and is a more skilled ultrasound technician than a regular OB. So it means you can have skilled ultrasounds as often as you like in her rooms to check on things which is comforting.
I had a few autoimmune thing show in my blood in low levels and she doesn't think these will be an issue but has written me extra blood test requests to have this monitored nonetheless.
I am back seeing my acupuncturist from now on too until I fall pregnant and then to weekly until I am 12 weeks. I cant recommend him high enough - Bill Wong in Murrumbeena Rd Murrumbeena.
Just had my first period since my miscarriage on 14th August at 14 weeks. One more cycle after this and we will try again. Third time lucky I hope!
Cheers,
Tess
Can anyone shed any light on what elevated levels of C reactive protein may mean?
I've got a history of this in blood tests that my rheumy has conducted, and just had my FS send me for his own round of autoimmune testing. He pretty much implied that if any of the tests came back with something we were pretty much screwed... that was one of his tests (I can't even recall if it was one that Dr S tested for), and I tripped over some results today that show it has been a problem in the past.
BW
Hi Butterfly Warrior,
CRP ( c reactive protein) is normally a measure of inflammation in the body. So if it is elevated, seems like there is too much inflammation going on from whatever cause whether it is autoimmune or another reason.
I had a CRP of 261 when I miscarried at 14 weeks and the reading should be less than 10 normally so something was clearly going on. You will also get a high CRP if there is an infection in your body. Inflammation is part of many processes in the body whether infection, pain, arthritis etc. some doctors even look at CRP for increasing your risk of heart disease if you are very overweight, have high blood pressure, large waist measurement, pre-diabetes or diabetes. It's one of the markers used for assessing heart attack risk.
In your case seems like it would be autoimmune.
I had my CRP re-done and it is now back to normal low levels, was just incredibly high during the miscarriage and I have had some doctors say I had an infection at the time and others say I didn't and it was just how my body reacts during miscarriage. who knows! I will definitely be checking it again next pregnancy regularly to see what is going on.
Let me know what your doctor says about your CRP and it's implications. I did a big search on the internet for CRP and miscarriage / infertility and there wasn't much I could find.
I have Factor V Leiden heterozygous so will inject with Clexane next pregnancy for the first time and take aspirin as there were some very low cardiolipin antibodies showing some low level auto-immune involvement but nothing high enough to put me in a specific auto-immune condition such as lupus or anti-phospholipid syndrome. They dont think I need prednisone at this stage but will keep an eye on the auto-immune aspect with regular blood tests.
I have also ordered Dr Alan Beer's book about infertility and autoimmune problems so looking forward to reading this when it arrives.
Best regards,
Tess
:bump::bump::bump:
Bumping this really interesting and useful thread for those that haven't come across it before, and also to ask if people have learnt or found more information about what testing is available etc it would be really valuable for members to have easy access to it.
Thanks :)
Hi All,
Have been doing quite a bit of research on immunoloical issues as I am hypothryoid with hashimotos and think that the anti thyroid antiboides have been causing implantation failure as i get PG for a few days almost every time with IVF but it doesn't stay. I have found a lot of great information, esp from Flowergirl, and butterfly warrior..
cheers
Wow, this thread is great. I?ve been looking into this and in December I had a telephone conference with Dr Gamal Matthias. He is a Reproductive Immunologist. I had a series of blood tests done and am currently waiting for results. I too seam to fall pregnant every time whether it?s assisted or natural. I can?t wait to hear the results, good or bad. My FS told me to just pray because he can?t find anything wrong with hubby or myself. What I do know is that I have Hashimotos, High thyroid antibodies and ATA levels that are only slightly elevated 1:40. Apparently these all make a difference.
I will let you know how my test results go when I receive them.
Hi bubwishes,
Great to "meet" someone dealing with the same thing. will be really interested to see what the repruductive immunologist has to say, what city is he in? I will hopefully be doing a phone consultation with Gavin Sacks in Sydney in next few weeks. we are in melb. I'm going to see a few FS to find out as much as I can, as I didn't last year and now is the time!!!
I went to a new endocrinologist in melb late last year and he changed me onto thyroxine and he wants my TSH to be around about 1. going on to thyroxine has reduced my antithyroid antibodies to about 21 and 45 but I don't know yet what it needs to be. The lab range is <6. Anyway will be great to swap notes. If you think we need new thread that is more specific would be happy for that, but have no idea how to do it!!!
Bubwishes,
what is ATA? Different to anti thyroid antibodies?
Dr Mathias is in Sydney too, and i'm in Perth. He trained under Dr Beer in the US. Yes ATA and Anti Thyroid is different .... i can't remember what ATA stands for either (i've got a mental blank this morning. we will have to keep each other up to date with our progress. hopefully i'll get my results next week.:lol:
Hi ladies,
With Dusty's permission, I am posting a link I stumbled across recently during researching about recurrent implantation failure. I will also post in the immunology test thread.
It outlines all the various tests that can be done to test for infertility, both male and femail, from genetics, immunology, endocrine, hormones, etc etc. It seems to have everything, which I haven't found all on one site before. It also gives great explanations as to what all the tests are.
Infertility Lab Test
I hope this helps some. Best wishes to you all. xx
Hi Babydream time,
I have started a thread re Thyroid issues, yeah me, first one, so proud!
https://www.bellybelly.com.au/forums...id-issues.html
Did you get your results yet?