# Sticky  Please Read before posting about Immune Issues the Answer could be here



## Eims

Hello all, after 3 failed icsi cycles (mfi, frozen sperm from tese) our clinic are now focusing on me.I've had a hysteroscopy and d and c and a load of blood tests. Got some results today and the onlyeons out of range is Protein C activity. Just wondering if anyone has any experience of this or advice they could give? Not quite clutching at straws but nearly! Thanks for reading.

Eims.


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## agate

if you have low protein C, it may indicate a problem with 'sticky blood' - there is more info on how its treated for fertility in my FAQ under T for thrombophilia in the investigations and immunology section.


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## Eims

Hi agate, thanks a million for the reply. I should have been more specific; my protein c result was higher then the range not lower. I'm finding it hard to find out the significance of this or even if there is any! If you have any thoughts I'd love to hear them. 

Thanks again,
Eims.


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## agate

elevated protein C levels aren't usually a problem..


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## ray of hope

Hi all, I am new to this site. I wanted to be in contact with some ladies out there with similar experiences as me as it can feel so loneley and depressing. I have had problems for 5 years now trying to have a baby. 
It started in Jan 2007 when I had graves disease and had to be admintered Radioactive iodine to turn my hyper thyroidism to hypo. Was not allowed to concieve for 6 months. After that had settled I went to see a consultant around period pains and was diagnosed with Endo, cos it was private she rushed me to have laser surgery to treat it. Bad choice found out years later. I conceived in DEC 2007  it ended in a m/c in FEB 2008, conceived again in OCT 2008 and ended in Nov 2008 as a ectopic had surgery and to my surprise was called in later by the consultant to be told it was choriocarcinoma, ( a very aggressive cancerous preganancy). Started chemo in Dec 2008- May 2009 told not to concieve for a year after my chemo had finished . I was so close to a year when the cancer came back again in Feb 2010   , had to start a more agressive chemo and told once i was in remission to leave it for another year which brought me to May 2011. I concieved this month just to find out I had a chemical preg/MC. 
It does get down that it can be so hard for some people to have children yet others have them abundantly, need friends!!


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## ray of hope

sorry to continue from above, (working in office you see!!) my pregnancies always failand i want to investigate this. I have hear that some women suffer from auto immune issues and i wanted to know of any experiences with the two dr's Gorgy and Nudukwe. Has anyone been to see them and who would you recommend.
thanks


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## babymiracles

Hi,

I have just had some immune tests done but can't get an appointment to see the consultant until mid Sept because of holidays. I wondered whether anyone has any advice on interpreting the test results as September seems such an age to wait. The [lymphocytes] total NK [%] is 12.4 where as the normal range is less than 10 but there don't seem to be any normal ranges for the other things. Any help would be much appreciated.

Xx


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## tracyl247

Morning Babymiracles

this link is for the immune thread where i think you might find your answer, if not i am sure someone will be able to help you out 
http://www.fertilityfriends.co.uk/forum/index.php?board=52.0

take care

Tracy


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## babymiracles

Thank you.


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## tracyl247

Welcome ray of hope

You certainly have had a rough few years 

if you have not already found it, this thread http://www.fertilityfriends.co.uk/forum/index.php?board=52.0 maybe of better use to you as it is on immune issues.

take care

Tracy


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## iwannabigbelly

hi all

not sure if i have put this in the right place i just wondered if anyone knew where the nearest place in/near norfolk i could get some nk testing done? i know about surry epsom and care notts both are about 4 hrs away, just wondered if there was somewhere nearer. whether that be nhs or private

thanks alot

xxx


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## tracyl247

Morning

Why not try posting on this thread as well http://www.fertilityfriends.co.uk/forum/index.php?board=528.0 its the South West region thread someone might be able to help you out.

Take care Tracy


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## MrsScooby

Unfortunately earlier this week we had a BFN on cycle 8, have had 3 chemical pregnancies but never had a positive result.

After 5th failed cycle we asked our clinic about other tests that could be done to investigate other issues that possibly could be contributing to us not getting a positive, our consultant reassured us there was no indication that we required additonal tests to be carried out.  
We then did another fresh cycle and two frozen, again no positive.  So far have paid around £11,000 for treatment.

As this week has gone on I've tried to come to terms with another BFN but having growing frustration towards the clinic, feeling they should have done other tests particularly immunity testing, at least to elminate this possibility.

Anybody any experience of similar situation and frustration?
Have read that GP can do first level immunity testing, on NHS, if advised by fertility clinic?

Am going to arrange to have consultant review and want to be as prepared as possible with information before we go, we might be coming to the end of the IVF road but have yet to decide.


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## tracyl247

Morning MrsScooby

Sorry to read of your recent BFN  have you had a look on the immune thread - http://www.fertilityfriends.co.uk/forum/index.php?topic=242395.0 the information is excellent and i am sure someone there might be able to help you get ready for your next appointment so that you can ask the best questions.

Take care

Tracy


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## Here&#039;s Hoping1

Sorry if I am being very dim, but I have seen a couple of ladies saying that they have managed to get their Level 1 immune testing done by their GP. 

Any advice about how I go about getting that done/persuading a GP to do it would be very much appreciated.

Am thinking after several BFN's that this could be our problem.

Thank you!!

x


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## tracyl247

Hi Jowill

have a look and post on the immune thread http://www.fertilityfriends.co.uk/forum/index.php?board=52.0 sure someone will point you in the right direction 

take care

Tracy


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## sam12

Hi Jowill,
i'm in a similar situation too, i wanted level 1 immune tests done so i dont have to do them on private treatment. well i asked my GP about it and was told to ring back in a couple of weeks time so see if they will do them or not as its not their standard procedure. i had few tests done from the level 1 immune lists but not the whole lot. you can ask your GP about doing thyroid, thromophilia, full blood count , liver function as they shouldnt have any problem with these, these tests are pretty normal . i will be calling my GP next week to know what happenes next, will keep you posted.


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## Lisa x

Hiya girls!  

After 2 failed cycles and a discussion with my consultant (we are private), I decided to go ahead and have the Level 1 immunes testing done.  All I did was make an appointment to see my GP, I took a little piece of paper with the following on:


•  Full blood count, liver function tests, Urea & Electrolytes
•  Thyroid function tests (both free T4 and TSH)
•  Immunoglobulin Panel (IgG, IgA and IgM)
•  Autoimmune antibodies (must include anti-nuclear antibodies, thyroid peroxidise and anti-mitochondrial antibodies)
•  Anticardiolipin antibodies (both IgC and IgM)
•  Thrombophilia (must include lupus anticoagulant, Factor V Leiden and Panthrombin gene mutation)


I told him that I was having ICSI privately but that as I had already had 2 failed cycles and about to start the next, I was wondering if there was some kind of immunes problems with me.  I showed him the list and said please could you refer me for these blood tests as my clinic have advised me to see my GP.  Straight away they said no problem and wrote out one of the blood test forms and wrote all of the above tests on there.  This was only yesterday.

I went back this morning, they took 9 different tubes of blood and I will get the results in the next 7 days.  I was pretty surprised at how easy and straight forward this was.

Good luck with your GPs, I hope they are as easy as mine was!  x


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## Here&#039;s Hoping1

Hello ladies,

Thank you so much for replying. That is massively helpful.
Have booked myself an appointment with my GP to see if they will do them. Am very encouraged by what you have said - even if they will only do a couple, it all helps the piggy bank!!!
Thanks again

xx


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## mccrea74

I am trying to get tested for antiovarian antibodies. There will be a hood chance i will be positive as i have hashimtos and positive antithyroid antibodies. I have just started 50mg thyroxine and baby aspirin.

I know that IVF clinics can prescrbe Prednisone just prior to IVF to help combat antibodies but my question is can i get this medication from my GP to take now?


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## Cozy

Mccrea,

personally I wouldn't recommend self medicating. Ideally you need to get the tests done, see what the results are then see what the best medication and doseage for you would be. Sometimes you can do more harm than good by not having the right drugs at the right time.

Cozy


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## Here&#039;s Hoping1

I just wanted to let you all know that my GP agreed to do the Level 1 testing without any question at all. He was lovely about it actually.
It helped I think that our consultant had thought we should get my thyroid tested so it gave me a good reason to ask for it all.
Getting bloods done on Monday so will just have to wait and see what if anything it all shows.
Thanks for all your help
x


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## kirst01

Hi

After 5 unsuccessful tx I took the list of Level 1 test's to my Gp, who admitted that she didnt have a clue regarding IVF tx, and she happily went through the list on the list on the computer and I got the whole lot of level 1's done, no problem. I have to ring for the results today so fingers crossed!  

xx


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## Here&#039;s Hoping1

Hope it all goes well Kirst01. Lots of    

Xx


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## macgirl

Following this thread with interest - hope your results were helpful Kirst01!


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## goingcrazy78

hi everyone , I'm not sure if I'm posting in the right place , but went for my follow up yesterday and was a little shocked Dr armatage said it looks like treatment had worked but our little squidgy had implanted in a blood vessel he said now he thinks Ive had a few early miscarriages i may have a problem with my blood clotting and he wants me to have a THROMBOTIC SCREEN WITH CHROMOSOMES (full thrombotic, immunology , thyroid with KArY )and my DH is to have a KArY CHROMOSOMES blood test i don't really understand what these very expensive tests are for he said there are other immune tests he can do but he doesn't see the point in us wasting the money on those as he will put me on the treatment next try regardless as it wont do me any harm to take the treatment i know hes trying save us some money he knows are funds have expired now and i don't mind taking the treatment if it will help but what i don't understand is the tests we need what are they for , what kind of things are they looking for and how can it affect our fertility etc with this test I'm also having the AMH test and if it is within normal range he said i should be OK to go for an egg share although i should think carfully as id have less eggs ( i think he was saying I'm going to need as many as i can get ) : ( but i cant keep affording the treatment we are struggling now as we need to find £1180 for these tests before we can go any further any info or advice or eve money saving tips will be greatly appreciated feel like any chance is slowly slipping away at the min


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## Rubyapple

Hi Everyone

After endless miscarriage tests, Doctors have reported I have very high NK cells.  My immune system is strong therefore I do not require immune therapy but have suggested I try Cleaxane and Presdisolone in my next IVF cycle.

I would like to know if anyone else has tried this treatment plan and have they had a successful pregnancy following recurrent miscarriage?

Also, as I have been seen by a private consultant, this is not available on the NHS (private - private, NHS - NHS) so if anyone knows where I can get this at a bargin, it would be appreciated.

Thanks
Ruby x


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## tracyl247

Hi Melanie

Have a look and maybe post here on the immune thread http://www.fertilityfriends.co.uk/forum/index.php?board=52.0 you might find some useful info and someone might be able to help you out.

Take Care

Tracy


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## goingcrazy78

thank you tracyl247 ill take a look x


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## Songbird80

Hi everyone

I've had one fresh donor egg cycle, one FET - both with top quality embryos and full immunes treatment - both BFNs.

Should I be thinking there is something wrong, should I just keep rolling the dice or should I be doing any other investigations to see if there is something stopping implantation? 

Thanks xxx


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## butterflies4ever

Did you also do the hidden C test with Dr. G & have a restest to see that you'd cleared it prior to cycling?

Just a thought!!


Electra x


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## Songbird80

Yep hidden c is negative but did test positive for mycoplasma so retesting this cycle to check it's gone.

Xx


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## Pinpin

Hey Songbird,


When I saw you at Dr G I think I remember you said something about not taking Humira but i think you said it had been recommended by Dr G.
What was your TNFa result? If high you might want to consider perhaps, as elevated TNFa are a known cause for implantation failure. Lots of love.


Pinpin x


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## Songbird80

Hi PinPin

My TNF is elevated...think it's 37 or something. Im retesting tomorrow to see where it is now as dr g suggested maybe upping the prednisolone to 40mg on the next cycle if it's still high. Maybe I should just try the humeira... Do you have to take it well in advance of cycling? I'm hoping to do another transfer pretty soon.

Songbird xx


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## Pinpin

I would definitely recommend trying Humira to lower your TNFa as they should be under 30. It does need to be taken before you start a cycle, I remember that I had my last shot about 1 month before transfer which Dr G said was fine. Your levels are not very high just a bit so they would probably get treated easily with just 2 shots (2 weeks appart if i remember well) - this means you could have this sorted within about a month and cycle again in november perhaps? I think Dr G's suggestion to go on the higher dose of prednisolone is a good one also (I am on 40mg myself). 
Personally i would do both Humira and 40mg pred so you know you are covering all basis fir the next one? Will you be doing a fresh cycle ? If so this will also drastically increase your odds of success as FET has a lower success rate anyway.


You are so determined, you will get there Songbird     


Pinpin x


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## Songbird80

Thanks pin pin... Really appreciate your advice. I think humeira and 40mg is the way to go. 

You feeling ok on 40mg? Hope is going ok for you xxx


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## Songbird80

Oh and I meant to say I have 4 frosties left so going to work through those before doing another fresh cycle xx


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## *ALF*

Hi

Just a thought, but have you had a scan to look at the blood flow to your uterus? The reason I ask is because I had this done alongside my immune tests. I had immune problems but the scan revealed elevated pressure in my uterine arteries meaning my lining was never developing fully. This came as a surprise because in all my previous cycles my lining had always been thick enough on scans and appeared as the required triple layer. The increased pressure meant that the third layer was not thickening enough and the embryo could not implant fully. This was easily treated with Viagra. 
Although my immunes came back showing problems treating these alone would not have resulted in a pregnancy as the embryo would nit have got past implantation in any case.

As you can see from my signature I conceived first cycle once both lining and immune problems were treated.

Just a thought incase this is an area you have not looked into.

Wishing you all the best.
ALF


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## Pinpin

I'm ok thank you, 8 weeks now and keeping everything crossed. I'm ok on 40mg, I sometimes wake up at night which I guess is a side effect but I think of it as a short term way of trying to keep my levels down. I hope my retest this week shows ok levels that allow me to reduce the dose as I don't particularly want to be on the 40mg any longer than needed but I will trust Dr G's judgement and only reduce when he thinks I'm ready to.


ALF's suggestion alos seem like a good one. Another FF of mine who also had immune issue was treated with viagra for her lining and had 2 successful pregnancies that were preceded by failed cycles.


Pinpin xxx


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## Songbird80

Alf - I've never heard about this so thanks for the tip. Where and how do I go about getting a scan? Is there a particular name for the scan? And dosage wise on the Viagra... Does that come prescribed from Dr G?

Thanks for posting xx

Pinpin - well I hope everything goes well for you lovely xxx


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## *ALF*

I think it's called a pelvic bloodflow scan, but am not totally sure on that. I had my tests and treatment through Dr George Ndukwe at CARE Nottingham. He had an arrangement with a private scan place in Nottingham that did them at a slightly reduced rate. Is Dr G in London, I'm sure there must be several places that will do it, just make sure it's detailed enough to look at the artery pressure.
I used Viagra suppositories as am very susceptible to migraines and was reluctant to take Viagra tablets. The suppositories had to come from a lab in America as they are not made in this country (or at least they weren't 4 years ago when I had treatment). Again Dr George had a lab he worked with over there, he faxed the prescription,we rang to pay and then they shipped them over. I used one suppository twice a day for 10 days at the beginning of my cycle (fet without down reg).
I can fish out the name of the lab in America if that's any use, but think you can just take viagra tablets aswell. 

Hope that's of some help.

ALF


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## Songbird80

Thanks Alf - definately going to check this out x


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## butterflies4ever

I took my last dose of humira 2wks prior to doing a fresh cycle.
It's also known that having high TNFa no's can damage the egg quality which is why we went for fresh!

It's all in Dr. Beers book 'Is your body baby friendly'


Electra x


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## Pinpin

Hi Songbird,


I don;t know much about the lining issues that get treated by viagra but I know it is possible to get this investigated and treated in London. My lovely FF friend's on the FF the forum who had this treatment is "sleepy dwarf".


if you look her up on the forums and send her a PM I'm sure she will be able to help you understand this area a bit better. She had her treatment at The Lister which I think is where you are?


Pinpin x


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## *ALF*

Hi

Just fished out my paperwork from my tests.  I have two report sheets from the ultrasound; Uterine Biophysical Report and Diagnostic Pelvic Ultrasound.  It seems to be the Uterine Biophysical Report that goes into depth and includes the 'uterine artery pulsatility index' which for me was highly raised.

Just out of intrest, as you mentioned your TNF levels earlier, I found my scribblings on this too. I had a raised TNF level of 38.7, raised NK activity level of 25.8, a CD19 level of 16.5 and 19+5+ level of 18.2.  I was treated with prednisolone 20mg until ET then up to 25mg after ET; low dose asprin from day 1 till ET; Clexane 40mg from ET; and viagra from day 2 for 10 days.  This treatment regime was succesful for me on my first FET.

All the best
ALF
x


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## Songbird80

Hi Ladies

Thanks for all the info on the pelvic blood flow scan... Going to try and book one. 
Alf - do you remember if the scan had to be done on a certain day in your cycle?

Pinpin - I've tried to find Sleepy Dwarf by searching and can't seem to get her... Any chance you know which threads I should try and find her on?

Thanks again lovelies xx


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## *ALF*

Scan needs to be done mid-cycle. If I remember they give a few days window. 

Good luck and would love to hear how things go.


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## Pinpin

Hi Songbird,

You can find sleepy on here:

http://www.fertilityfriends.co.uk/forum/index.php?topic=263006.168

Lots of love

Pinpin xxx


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## Songbird80

Thanks Alf and Pin pin xx


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## LexySmoker

Hi ladies 
just read your posts and I'm in the process of having immune testing done, Iv written down the things you have suggested, thankyou for that, would love to know how your all going with your tests results??


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## agate

you should be able to get vaginal viagra jelly with applicators via serum in athens very soon - should be much cheaper and easier to get hold of than pessaries from the US.... also don't forget we have a big immunes section on FF 

see the link in my signature for immunes FAQ.


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## Marcelle Spiteri

Hello there this is the first time i am writing and maybe some of you experienced something the same.  I was given humira and my tnf went up again and then i was given intralipid and my tnf is increased again.  i dont know whether to  tell the clinic to give me IVIG rather than intralipid.  any one of you had my same problem please?

Mars


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## GraceIvo

Hi Agate,

I've just got back my NK Cell Inhibition Panel results.  

Everything appears normal except my CD56 is 12.3 (range 2-12) and my CD19+cells, CD5+ is 2.3 (range 5-10).  

I have studied your section on how to understand the test results but I just wonder if you have any info on when a result is lower than the normal range not elevated as in my CD19+cells, CD5 results.  

Many thanks for any help on this.


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## agate

wouldn't be worried about the reduced cd19+5+

would be thinking of low dose steroids or intralipids for the borderline CD56


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## GraceIvo

Thank you very much Agate.  When you say low dose steroids is that usually around 20mg?  I've tried steroids before without success so am quite keen to try Intralipids before my next treatment.  I've listed the full results below because just another quick question.  Do they show that I respond better to Intralipids than IviG?

Many thanks again.  Your knowledge on this is invaluable!

NK Assay (% killed) panel
50:1                                    11.8 
25:1                                      8.5
12.5:1                                    6.3 
IgG conc 12.5 50:1              11.4
IgG conc 12.5 25:1                6.1
Intralipid 1.5 mg/ml, 50 :1    10.9
Intralipid 1.5 mg/ml, 25 :1      5.3
% CD3+                                79.2 
% CD19+                                8.8  
% CD56+                              12.3  
% of CD19+ cells, CD5+        2.3


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## agate

low dose would be more like 10mg than 20mg.


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## GraceIvo

Thanks again Agate!


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## butterflies4ever

Marcelle Spiteri said:


> Hello there this is the first time i am writing and maybe some of you experienced something the same. I was given humira and my tnf went up again and then i was given intralipid and my tnf is increased again. i dont know whether to tell the clinic to give me IVIG rather than intralipid. any one of you had my same problem please?
> 
> Mars


The same thing happened with me when i took Intralipids my no's went up so i had many Ivig drips b4 & during pregnancy.
The humira decreased my no's but it's not rare that in some cases it will increase no's but as i read in Dr. Beers book he states that those who's no' increase with Humira are more likely to fall pregnant & carry to term.
      

Electra x


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